Evidence review for symptom recognition

National Guideline Centre (UK)

Evidence review for symptom recognition

Renal replacement therapy and conservative management

Evidence review

NICE Guideline, No. 107

Authors

National Guideline Centre (UK).

London: National Institute for Health and Care Excellence (NICE); 2018 Oct.

ISBN-13: 978-1-4731-3107-1

1. Symptom recognition

1.1. Review question: What are the most important symptoms to recognise for people undergoing RRT or receiving conservative management?

1.2. Introduction

There is a wide variety of symptoms reported in people in late stage CKD, some of which, e.g. uncontrolled fluid overload, may indicate a need to start renal replacement therapy. There is some uncertainty regarding which symptoms healthcare professionals should be aware of and should recognise in their patients. People may also be uncomfortable talking about certain symptoms, for example sexual dysfunction. The purpose of this review is to identify the symptoms most important to people on renal replacement therapy or conservative management.

1.3. Characteristics table

For full details see the review protocol in appendix A.

Table 1

Characteristics of review question.

1.4. Qualitative evidence

1.4.1. Included studies

Thirty four qualitative studies were included in the review¹^, ⁵^, ⁶^, ⁸^, ¹²^–¹⁴^, ¹⁶^, ¹⁹^–²¹^, ²⁵^, ²⁶^, ²⁸^, ³¹^–³⁴^, ³⁶^, ³⁹^–⁴¹^, ⁴⁹^–⁵³^, ⁵⁶^, ⁵⁸^, ⁵⁹^, ⁶³^, ⁶⁷^, ⁷¹^, ⁷² these are summarised in Table 2 below. Key findings from these studies are summarised in Section 1.4.2 below. See also the study selection flow chart in appendix C, study evidence tables in appendix D, and excluded studies lists in appendix E.

Twenty eight studies explored the views of adult patients with on RRT. One study focused on the views of adolescent patients on RRT. Four studies focused on the views of patients and family members/carers on RRT. One study focused on the views of parents whose children were on RRT or considering RRT.

1.4.2. Excluded studies

See the excluded studies list in appendix E.

1.4.3. Summary of qualitative studies included in the evidence review

Table 2

Summary of studies included in the review.

See appendix D for full evidence tables.

1.4.4. Qualitative evidence synthesis

Throughout this review wherever possible the original wording of the participants in the studies themselves has been maintained in order to preserve the intended meaning.

As this is a qualitative review the principle aim was to identify symptoms that were important to individuals. Alongside the individual symptoms, a high level summary of the frequency of the finding (in other words, did the study specifically mention a symptom as being frequently reported by the participants or not) and any additional pertinent details are presented below. However it is important to emphasise that determining the prevalence of symptoms was not the intended purpose of the review.

Pre RRT

Table 3

Review findings.

Conservative Management

Table 4

Review findings.

Haemodialysis

Table 5

Review findings.

Peritoneal dialysis

Table 6

Review findings.

Transplant

Table 7

Review findings.

1.4.5. Qualitative evidence summary

Pre-RRT

Table 8

Summary of evidence.

Table 9

Summary of evidence.

Table 10

Summary of evidence.

Table 11

Summary of evidence.

Table 12

Summary of evidence.

Table 13

Summary of evidence.

Table 14

Summary of evidence.

Table 15

Summary of evidence.

Table 16

Summary of evidence.

Table 17

Summary of evidence.

Table 18

Summary of evidence.

Conservative Management

Table 19

Summary of evidence.

Table 20

Summary of evidence.

Table 21

Summary of evidence.

Table 22

Summary of evidence.

Table 23

Summary of evidence.

Table 24

Summary of evidence.

Table 25

Summary of evidence.

Table 26

Summary of evidence.

Table 27

Summary of evidence.

Table 28

Summary of evidence.

Table 29

Summary of evidence.

Table 30

Summary of evidence.

Table 31

Summary of evidence.

Table 32

Summary of evidence.

Table 33

Summary of evidence.

Table 34

Summary of evidence.

Table 35

Summary of evidence.

Table 36

Summary of evidence.

Table 37

Summary of evidence.

Table 38

Summary of evidence.

Table 39

Summary of evidence.

Table 40

Summary of evidence.

Table 41

Summary of evidence.

Table 42

Summary of evidence.

Table 43

Summary of evidence.

Table 44

Summary of evidence.

Table 45

Summary of evidence.

Table 46

Summary of evidence.

Table 47

Summary of evidence.

Haemodialysis

Table 48

Summary of evidence.

Table 49

Summary of evidence.

Table 50

Summary of evidence.

Table 51

Summary of evidence.

Table 52

Summary of evidence.

Table 53

Summary of evidence.

Table 54

Summary of evidence.

Table 55

Summary of evidence.

Table 56

Summary of evidence.

Table 57

Summary of evidence.

Table 58

Summary of evidence.

Table 59

Summary of evidence.

Table 60

Summary of evidence.

Table 61

Summary of evidence.

Table 62

Summary of evidence.

Table 63

Summary of evidence.

Table 64

Summary of evidence.

Table 65

Summary of evidence.

Table 66

Summary of evidence.

Table 67

Summary of evidence.

Table 68

Summary of evidence.

Table 69

Summary of evidence.

Table 70

Summary of evidence.

Table 71

Summary of evidence.

Table 72

Summary of evidence.

Table 73

Summary of evidence.

Table 74

Summary of evidence.

Table 75

Summary of evidence.

Table 76

Summary of evidence.

Table 77

Summary of evidence.

Table 78

Summary of evidence.

Table 79

Summary of evidence.

Table 80

Summary of evidence.

Table 81

Summary of evidence.

Table 82

Summary of evidence.

Table 83

Summary of evidence.

Table 84

Summary of evidence.

Table 85

Summary of evidence.

Table 86

Summary of evidence.

Peritoneal dialysis

Table 87

Summary of evidence.

Table 88

Summary of evidence.

Table 89

Summary of evidence.

Table 90

Summary of evidence.

Table 91

Summary of evidence.

Table 92

Summary of evidence.

Table 93

Summary of evidence.

Table 94

Summary of evidence.

Table 95

Summary of evidence.

Table 96

Summary of evidence.

Table 97

Summary of evidence.

Table 98

Summary of evidence.

Table 99

Summary of evidence.

Table 100

Summary of evidence.

Table 101

Summary of evidence.

Table 102

Summary of evidence.

Table 103

Summary of evidence.

Table 104

Summary of evidence.

Transplant

Table 105

Summary of evidence.

Table 106

Summary of evidence.

Table 107

Summary of evidence.

Table 108

Summary of evidence.

Table 109

Summary of evidence.

Table 110

Summary of evidence.

Table 111

Summary of evidence.

Table 112

Summary of evidence.

Table 113

Summary of evidence.

Table 114

Summary of evidence.

Table 115

Summary of evidence.

Table 116

Summary of evidence.

Table 117

Summary of evidence.

Table 118

Summary of evidence.

Table 119

Summary of evidence.

Table 120

Summary of evidence.

Table 121

Summary of evidence.

Table 122

Summary of evidence.

Table 123

Summary of evidence.

Table 124

Summary of evidence.

Table 125

Summary of evidence.

Table 126

Summary of evidence.

Table 127

Summary of evidence.

Table 128

Summary of evidence.

Table 129

Summary of evidence.

Table 130

Summary of evidence.

Table 131

Summary of evidence.

1.5. Economic evidence

The committee agreed that health economic studies would not be relevant to this review question, and so were not sought.

1.6. Resource impact

The recommendations made based on this review (see section Error! Reference source not found.) are not expected to have a substantial impact on resources.

1.7. The committee’s discussion of the evidence

1.7.1. Interpreting the evidence

1.7.1.1. The quality of the evidence

The quality of evidence ranged from very low to moderate for pre-RRT, haemodialysis, peritoneal dialysis and transplant. For conservative management the evidence was low quality. Evidence was downgraded due to methodological limitations and concerns regarding adequacy.

1.7.1.2. Findings identified in the evidence synthesis

This qualitative review identified no critical themes but symptoms or the impact of symptoms. The committee incorporated the symptoms that were frequently reported into the recommendations.

A vast amount of symptoms were identified, with the main findings being; fatigue, breathlessness, oedema, sexual dysfunction, pain, GI problems, depression, immobility, itching, nausea, anger, anxiety, body image, headaches, cognitive fluctuations, cramps, dizziness, insomnia, restless legs, thirst, vertigo, weakness, weight gain and infection.

The committee also noted that limited information was provided on the people included in the studies.

The committee noted that people undergoing RRT or conservative management may experience a wide range of mood changes, for some people this will be predominantly low mood or depression. Some people may experience bouts of irritability or anger, particularly in the immediately post-dialysis period due to the physiological toll taken.

1.7.2. Cost effectiveness and resource use

Economic evidence was not relevant to this question.

1.7.3. Other factors the committee took into account

The committee noted that it was difficult to know if the symptoms identified could be attributed to uraemia, the treatment or to another cause for example fatigue and anxiety. Only a minority of people in the pre-dialysis population reported symptoms however this was based on three studies also contributing to HD, PD and transplant, with only one exclusively reporting pre-RRT participants. The experience of the committee was that these people experience a wide range of symptoms due to uraemia and these are often the reasons for initiating treatment.

The committee thought that symptoms may have been under reported in the people on pre-RRT, PD and conservative management. Under reporting may occur for all treatment modalities for symptoms such as sexual dysfunction and itchiness due to people not being aware that they can be related to their condition or treatment.

The committee concluded that the symptoms reported in the studies were not comprehensive, for example there were considerably fewer symptoms reported in the pre-dialysis people (probably because people did not recognise their symptoms were due to their renal condition) and they are therefore not presented in the recommendation according to modality or conservative management. The committee wished to emphasise that the symptoms reported in the studies should not be used to help people decide what modality of renal replacement therapy or conservative management to choose. It is important to ask the person about their symptoms and to ascertain what might be due to their condition or treatment. This discussion is ongoing throughout the duration of treatment including conservative management. It is important to manage people’s expectations regarding the extent to which treatment will control symptoms.

The committee discussed that it may be difficult to recognise symptoms in very young children.

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Appendices

Appendix A. Review protocols

Table 132. Review protocol: symptom recognition

Appendix B. Literature search strategies

B.1. Clinical search literature search strategy

Searches for patient views were run in Medline (OVID), Embase (OVID) and CINAHL, Current Nursing and Allied Health Literature (EBSCO). Search filters were applied to the search where appropriate.

Table 133. Database date parameters and filters used

Medline (Ovid) search terms

Embase (Ovid) search terms

CINAHL (EBSCO) search terms

Appendix C. Qualitative evidence selection

Figure 1. Flow chart of qualitative study selection for the review of symptom recognition

Appendix D. Qualitative evidence tables

Download PDF (640K)

Appendix E. Excluded studies

E.1. Excluded qualitative studies

Table 134. Studies excluded from the qualitative review

Table 135. Studies identified but not included in the qualitative review due to saturation being reached

Final

Qualitative evidence review

These evidence reviews were developed by the National Guideline Centre

Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.

Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.

NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.

Bookshelf ID: NBK577494PMID: 35133742

Table 1Characteristics of review question

Objective	To provide evidence of the types of symptoms that people undergoing RRT find are most important to them, particular focus on symptoms that: some people may be unaware are related to their condition/treatment are most impactful in terms of quality of life are under-recognised by healthcare professionals
Population and setting	Adults and children who are being assessed for RRT or conservative management for later stages of CKD, or who are undergoing RRT or conservative management, their families, carers and healthcare professionals Evidence will be reported separately for: Pre-RRT vs HD vs PD vs TPx vs CM <2, 2 to <16, 16 to <25, 25 to <70, 70 and over
Context	Any themes that emerge relating to the symptoms of the target population.
Review strategy	Synthesis of qualitative research. Results presented in table format. Quality of the evidence will be assessed by a GRADE CerQual approach for each review finding.

Table 2Summary of studies included in the review

Study	Design	Population	Research aim	Comments
Al Nazly, 2013¹	In-depth semi-structured face to face interview with thematic qualitative analysis	20 to 69 years (Mean=47yrs) Jordan All on haemodialysis	To examine the lived experiences of Jordanian patients with CKD receiving HD.	Minor limitations due to country.
Barnieh, 2014⁵	Open ended survey distributed online with thematic qualitative analysis	18 to 80+ years (Mode=60-69yrs) Patients and carers Canada Haemodialysis	To synthesise the views of Canadian patients on or nearing dialysis and those who care for them.	Moderate limitations due to methods design.
Baskale, 2011⁶	In-depth semi-structured face to face interview with thematic qualitative analysis	12 to 20 years (Mean=15.5yrs) Turkey Haemodialysis	To explore how adolescents receiving HD were affected by their diagnosis and treatment.	Minor limitations due to country.
Bourbonnais, 2012⁸	In-depth semi-structured face to face interview with thematic qualitative analysis	31 to 90 years (Mode=61+yrs) Canada Haemodialysis	To provide an overview of pain experienced by patients undergoing maintenance dialysis.	Minor limitations
Campbell, 2016¹²	In-depth semi-structured face to face interview with thematic qualitative analysis following the principles of grounded theory	30 to 89 years (Mode=40-49yrs) Australia Peritoneal dialysis	To describe the beliefs, needs and experiences of PD patients about peritonitis.	Minor limitations
Cervantes, 2017¹³	In-depth semi-structured face to face interview with thematic qualitative analysis	30 to 78 years (Mean=61yrs) US Haemodialysis	To explore the preferences of Latino patients receiving dialysis regarding symptom management and ACP.	Minor limitations
Chiaranai, 2016¹⁴	In-depth semi-structured face to face interview with thematic qualitative analysis	18+years (Range=48 to 77 yrs) Thailand Haemodialysis	To better understand the daily life experiences of Thai patients with ESRD on HD.	Minor limitations due to ethics
Cox, 2017¹⁶	In-depth semi-structured face to face interview with transcription and thematic qualitative analysis	20 to 75+ years (Mode=45-64yrs) US Haemodialysis	To describe patients’ perspectives on symptoms associated with end-stage chronic kidney disease treated with thrice-weekly, incentre HD.	Minor limitations due to ethics
da Silva Alencastro, 2013¹⁹	In-depth semi-structured face to face interview with thematic qualitative analysis	44 to 50 years (Median=45yrs) Brazil Kidney transplant recipients	To understand the meanings in process of renal transplantation in view of the transplanted person.	Moderate limitations due to role of researcher and rigor of data collection/methods
DePasquale, 2013²⁰	In-depth semi-structured face to face interview with thematic qualitative analysis	18+years (Mean=58.1yrs) Patients and family members US Pre RRT, haemodialysis, peritoneal dialysis, kidney transplant recipients	To elicit their views regarding information they felt should be featured in educational resources informing RRT selection decisions.	Moderate limitations due to ethics and research design
Ekelund, 2010²¹	In-depth questionnaire based semistructured face to face interview with follow up telephone calls, with thematic qualitative analysis	26 to 84 years (Mean=61yrs) Patients and partners Sweden Haemodialysis or peritoneal dialysis	To elicit psychological and psychosocial problems existing in patients in dialysis and their partners.	Moderate limitations due to unclear role of the researcher and ethics approval
Harwood, 2005²⁵	In-depth semi-structured face to face interview with thematic qualitative analysis	61 to 89years (Mean=72.7yrs) Canada Haemodialysis	To identify the implications for patient education and support needed in the care of patients with CKD.	Minor limitations
Heck, 2004²⁶	In-depth semi-structured face to face interview with thematic qualitative analysis	19 to 71years (Median=52yrs) Germany Kidney transplant recipients	To examine the psychosocial effects of living donor kidney transplantation for donors and recipients under successful as well as complicated circumstances.	Severe limitations due to ethics, role of the researcher, data collection, data analysis and richness of data
Horigan, 2013²⁸	In-depth semi-structured face to face interview with thematic qualitative analysis	21+years (Mode=60-69yrs) US Haemodialysis	To describe the experience and self-management of fatigue in adult patients on haemodialysis	Minor limitations
Jones, 2017³¹	In-depth semi-structured face to face interview with thematic qualitative analysis	55 to 88years (Median=74yrs) UK Haemodialysis	To obtain UK NHS patients’ perspectives on the challenges arising from HD with the intention of identifying potential improvements.	Minor limitations
Kaba, 2007³²	In-depth semi-structured face to face interview with theoretical sampling analysis	18+years (Mean=62yrs) Greece Haemodialysis	To explore how Greek patients receiving long-term haemodialysis perceive their problems and to describe the impact of haemodialysis on these patients’ lives.	Minor limitations
Korus, 2011³³	Focus group sessions with content analysis	13 to 17years (Mean=15yrs) Canada Kidney transplant recipients	To explore information needs of adolescents who have undergone kidney transplantation	Minor limitations
Lai, 2012³⁴	In-depth semi-structured face to face interview with interpretative phenomenological analysis	39 to 63years (Mean=52yrs) Singapore Haemodialysis	To explore the lived experiences of incident haemodialysis patients in Singapore.	Minor limitations due to country and ethics
Lee, 2007³⁶	In-depth semi-structured face to face interview with thematic qualitative analysis	26 to 72years (Mean=52yrs) South Taiwan Haemodialysis	To explore the fatigue experience from haemodialysis patients’ perspectives.	Minor limitations due to ethics
Lin, 2005³⁹	In-depth semi-structured face to face interview with thematic qualitative analysis	28 to 53years (Mean=38.9yrs) South Taiwan Haemodialysis	To describe the experiences of making a decision about HD among a group of Taiwanese with ESRD.	Minor limitations due to country and ethics
Lindqvist, 2000⁴⁰	In-depth semi-structured face to face interview with content analysis	28 to 86years Sweden Haemodialysis, Peritoneal dialysis, kidney transplant recipients	To describe the perceived consequences of illness and treatment among ESRD patients.	Minor limitations due to role of researcher
Lonargáin, 2017⁴¹	In-depth semi-structured face to face interview with interpretative phenomenological analysis	26 to 68years (Mean=45yrs) UK Kidney transplant recipients	To explore the psychological experiences of receiving a kidney transplant from a deceased donor.	Minor limitations
Murray, 2014⁴⁹	In-depth semi-structured face to face interview with content analysis	18 to 30years (Median=25yrs) UK Kidney transplant recipients	To assess the impact of ESKD on education and employment outcomes in young adults.	Minor limitations due to rigor of data analysis
Noble, 2010⁵⁰	In-depth semi-structured face to face interview with thematic qualitative analysis	Age not stated (25 to 70yrs assumed) Patients/carers UK Conservative management	To explore symptoms in stage 5 CKD patients without dialysis.	Moderate limitations due to insufficient information on data analysis
Orr, 2007⁵¹	Focus group sessions with thematic qualitative analysis	18+years (Mode=60+) UK Kidney transplant recipients	To explore patients’ lived experience in relation to medication adherence.	Minor limitations
Orr, 2007⁵²	Focus group sessions with thematic qualitative analysis	18+years (Mode=60+) UK Kidney transplant recipients	To explore the experience of living with a transplanted kidney.	Minor limitations
Polaschek, 2003⁵³	In-depth semi-structured face to face interview with thematic qualitative analysis	20 to 60+years New Zealand Haemodialysis	To contribute towards enabling health professionals to provide more effective support to people who are living with ESRD.	Minor limitations
Schmid-Mohler, 2014⁵⁶	In-depth semi-structured face to face interview with content analysis	18+ years (Median=52yrs) Switzerland Kidney transplant recipients	To explore the concept and the presence of self-management tasks mastered by patients in the early phase after kidney transplant.	Minor limitations
Small, 2010⁵⁸	In-depth semi-structured face to face interview with thematic qualitative analysis	20 to 70+years Namibia Haemodialysis	To describe the experiences of patients receiving HD for CKD.	Minor limitations due to country
Stanfill, 2012⁵⁹	Focus group sessions with thematic qualitative analysis using the ‘long table approach’	41 to 60+ years (Mean=55yrs) US Kidney transplant recipients	To obtain insight into recipients’ perception of weight gain.	Moderate limitations due to the data not being rich and ethical approval
Tong, 2010⁶³	In-depth semi-structured face to face interview with thematic qualitative analysis	Parents of children on RRT 0-18years of age (Mode=15-19yrs) Australia Pre RRT, haemodialysis, peritoneal dialysis, kidney transplant recipients	To explore the experiences of parents who have children with CKD.	Minor limitations due to ethics
Winterbottom, 2014⁶⁷	In-depth semi-structured face to face interview with thematic qualitative analysis	18+years (Median=57.5yrs) UK Pre RRT	To understand how patients with kidney failure make their dialysis treatment decision.	Minor limitations
Yngman-Uhlin, 2010⁷¹	In-depth semi-structured face to face interview with transcripts analysed using a phenomenological reduction in four systematic steps	36 to 82years Sweden Peritoneal dialysis	To describe how patients on PD treatment at home experience tiredness linked to poor sleep in everyday life.	Minor limitations
Yodchai, 2011⁷²	In-depth semi-structured face to face interview with open, axial and selective coding in accordance with GT analysis	24 to 66years (Mean=45.4yrs) Thailand Haemodialysis	To explore how HD affects Thai patients with ESRD.	Minor limitations due to country

Table 3Review findings

Main findings	Frequency of finding	Additional details
Oedema	Infrequent	Specific mention of swollen ankles
Itching	Infrequent	Specific mention of high intensity of itching
Fatigue	Infrequent	-
Cramps	Infrequent	-
Cognitive fatigue	Infrequent	-
Moodiness	Infrequent	-
Nausea/vomiting	Infrequent	-
Pain	Infrequent	-
Sleep disturbance	Infrequent	-
Weight loss	Infrequent	-
Weight gain	Infrequent	-

Table 4Review findings

Main findings	Frequency of finding	Additional details
Breathlessness	Common	Participants associated this with fluid overload caused by renal disease and/or associated anaemia.
Gastrointestinal problems	Common	Participants reported difficulties related to incontinence and altered bowel habits.
Depression	Common	Often attributed to being unable to do things they’d previously been able to do with ease. Some were depressed due to the decision not to have dialysis.
Immobility	Common	Participants had problems with walking, standing and being active, causing problems with their self-care. Some complained of ‘feeling trembly’ in their legs, having a fear of falling and painful knee/hip joints.
Itching	Common	Participants found this problematic and persistent. Occasionally it led to other problems for some such as ulcers.
Fatigue	Common	Participants reported feeling tired and finding it debilitating, with daily chores, tasks and social needs not being able to be carried out with as much ease as before the condition.
Nausea/vomiting	Common	Participants suffered from this and managed it with anti-emetics medication when required. Some reported it was due to uraemia, chest infection or constipation.
Pain (including joint pain, needle pain, phantom pain)	Common	Participants reported different types of pain due to problems such as arthritis, a fractured hip, leg ulcers and cancer. Some had pain due to an unknown cause and none reported pain due to renal disease.
Oedema	Common	Some had associated breathlessness and fluid overload which affected mobility.
Weight loss	Infrequent	-
Weakness	Infrequent	-
Trembling	Infrequent	-
Sore mouth/tongue	Infrequent	-
Visual disturbances	Infrequent	-
Cognitive fluctuations	Infrequent	-
Poor balance	Infrequent	-
Poor appetite	Infrequent	-
Pins and needles	Infrequent	-
Insomnia	Infrequent	-
Incontinence	Infrequent	-
Headaches	Infrequent	-
Dry skin	Infrequent	-
Dizziness	Infrequent	-
Difficulty swallowing	Infrequent	-
Cramps	Infrequent	-
Confusion	Infrequent	-
Altered taste	Infrequent	-

Table 5Review findings

Main findings	Frequency of finding	Additional details
Fatigue	Common	Participants complained of decreased energy and feeling tired before dialysis but even more so afterwards, stating it drains their energy.
Pain	Common	Participants reported a variety of pain problems in their back or joints and some patients mentioned the needle pain during dialysis.
Exhaustion	Common	Participants described a lack of physical energy after dialysis and not being able to do activities they wanted to do such as going out, exercising and household chores.
Depression	Common	Participants reported psychological stress and mood swings, feeling depressed because HD occupied most of their lives.
Dizziness	Common	Participants experienced a sensation of being lightheaded and dizzy in conjunction with extreme fatigue, particularly immediately after dialysis.
Malaise	Common	-
Insomnia	Common	-
Helplessness	Common	Participants described feeling this and feeling as victims of the treatment rather than it benefiting them.
Itching	Common	This was a common symptom, with some mentioning how phosphorous levels needed to be maintained to control itching, either by diet or medication.
Restless legs	Common	-
Stress	Common	Participants reported this due to having to schedule in dialysis treatment around their job and fear of dying.
Thirst	Common	Participants described how they think about this every day and how their mouth feels dry.
Cramps	Common	Participants reported cramps and muscle pain following rapid fluid removal, which could persist once they got back home.
Sexual functioning	Common	Some participants indicated they were no longer interested in sex and a larger number indicated they were sexually active, but indicated the frequency had decreased.
Anger	Infrequent	A lot of participants reported frustration with the complication dialysis put on their lives and anger with people pitying them.
Anxiety	Infrequent	Participants reported anxiety about potential problems that could arise from dialysis and the prospect of premature death.
Body image/hair growth	Infrequent	Participants described a disturbed body image, mentioning bloating, being unable to shave and having a bump on the forearm due to the needle.
Breathlessness	Infrequent	This was the reason some participants were diagnosed with ESRD and some reported it as a worsening symptom.
Cognitive fatigue	Infrequent	Some participants reported their mental strength was weakened after dialysis and described mental fatigue causing them to not hold conversations or remember conversations.
Headaches	Infrequent	Participants mentioned headaches after dialysis sessions caused by the machines and that it is too difficult going three times a week.
Discomfort	Infrequent	Participants expressed discomfort with the chairs used during dialysis, with some saying it made their joint and back pain worse, and made them feel immobilised.
Guilt	Infrequent	Some felt guilt as they felt they couldn’t be a good wife or mother through physical limitations.
Loneliness	Infrequent	Some participants felt lonely as they couldn’t socialise anymore with their restrictions blocking them from seeing their friends.
Nausea/vomiting	Infrequent	Some participants mentioned this as a worsening symptom. One parent reported how it was a struggle to feed their child as they kept vomiting and retching. Some mentioned nausea was caused by the medication.
Sleep disturbance/sleepi ness	Infrequent	Most participants attributed their tiredness to sleeping problems, with some describing disjointed sleep patterns and not being able to sleep well.
Gastrointestinal problems	Infrequent	This symptom was reported but relatively infrequently and was the symptom that resulted in their ESRD diagnosis for some participants.
Vertigo	Infrequent	-
Denial	Infrequent	Most participants reported altered or negative emotional responses to dialysis including denial.
Weakness	Infrequent	Typically reported after a dialysis session, with participants mentioning feeling worn out, weak and unable to walk around.
Drowsiness	Infrequent	This symptom was reported as impacting their daily activities and employment.
Blood pressure alterations	Infrequent	Participants reported this infrequently, with hypotension as a common symptom associated with dialysis.
Heart problems (including irregular heartbeat)	Infrequent	This was reported by some participants and generally participants stated that they were willing to endure this in exchange for life.
Weight gain	Infrequent	-
Weight loss	Infrequent	-
Numbness	Infrequent	-
Moodiness	Infrequent	-
Decreased mobility	Infrequent	-

Table 6Review findings

Main findings	Frequency of finding	Statement of finding
Fatigue	Common	Participants reported low levels of energy and feeling tired after dialysis.
Itching	Common	Participants reported this as usually intense and at times leading to sleep disturbances and pain.
Abdominal pain	Infrequent	Participants reported this in relation to the dialysis process resulting in some sleep disturbance.
Anxiety	Infrequent	Some participants reported worries about complications, death and feeling afraid about future transplantations.
Body image/hair growth	Infrequent	Some participants mentioned changes in body image, specifically bloating, and being unable to shave.
Cognitive fatigue	Infrequent	Some participants reported difficulties with concentration, creativity and making decisions.
Cramps	Infrequent	Participants reported cramps in relation to the draining and refilling of the dialysis solution.
Stress	Infrequent	Participants described needing to stop whilst doing household tasks due to tiredness, which contributed to their stress.
Sexual dysfunction	Infrequent	-
Weakness	Infrequent	Participants reported gradually developing the feeling of being worn out with it coming on faster than before, with everyday tasks becoming more time-consuming.
Unstable temper	Infrequent	Some participants reported experiencing mood changes such as becoming more short-tempered due to their lack of sleep.
Moodiness	Infrequent	-
Loneliness	Infrequent	-
Nausea/vomiting	Infrequent	-
Pain	Infrequent	-
Sleep disturbances/slee piness	Infrequent	-
Weight loss	Infrequent	-
Weight gain	Infrequent	-

Table 7Review findings

Main findings	Frequency of finding	Statement of finding
Fatigue	Common	Low levels of energy and feeling tired was reported by most participants as a side effect to transplant medication and after transplant operations.
Fragile skin	Common	This symptom was reported by most participants as a side effect to transplant medication.
Weight gain	Common	This symptom was reported by most participants as a side effect to the transplant and transplant medication.
Infection	Common	Most participants reported this as a side effect to transplant medication.
Moodiness	Common	Most participants reported this as a side effect to transplant medication.
Anxiety	Infrequent	Participants were worried about getting an illness after the transplant.
Body image/hair growth	Infrequent	Participants explained how they strongly disliked the effects of their medication on their appearance (e.g. bloating, hair growth) affecting their self-image and self-confidence.
Tinnitus	Infrequent	Participants reported this as an adverse effect from transplant medication with ranging severity, with one participant being unable to listen to music.
Pain	Infrequent	Participant’s reported pain from surgery and transplant medication including back, joint, bones, foot or leg pain.
Stress	Infrequent	Participants reported the stress they felt in not being able to take part in their normal routine, and not being treated like other students, wanting to be treated equally.
Nausea/vomiting	Infrequent	Participants reported this but fairly infrequently, with one parent mentioning the difficulty in feeding their child.
Shakiness	Infrequent	Some participants reported this as a side effect to transplant medication.
Skin cancer	Infrequent	Some participants reported this as a side effect to transplant medication.
Itching	Infrequent	This symptom was reported relatively infrequently and, when experienced, as intense.
Swollen gums	Infrequent	Some participants reported this as a side effect to transplant medication.
Visual disturbances	Infrequent	This was reported as one of many symptoms by participants as an adverse effect from transplant medication.
Fever	Infrequent	-
Oedema	Infrequent	-
Sleep disturbance/sleepi ness	Infrequent	-
Weight loss	Infrequent	-
Hallucinations/nig htmares	Infrequent	-
Gastrointestinal problems	Infrequent	Participants reported this as an adverse effect from transplant medication.
Cramps	Infrequent	-
Cognitive fatigue	Infrequent	-
Crumbling bones	Infrequent	-
Depression	Infrequent	-

Table 8Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cognitive fatigue
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about relevance
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 9Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cramps
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about relevance
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 10Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Fatigue
3 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about relevance
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 11Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Itching
2 (People aged 25 to <70)	Individual interviews	This symptom was reported relatively infrequently and as intense.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 12Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Moodiness
1 (People aged 25 to <70)	Individual interviews	This symptom was reported relatively infrequently.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 13Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Nausea/vomiting
2 (People aged 2 to <16, 16 to <25, 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	MODERATE
			Coherence	Minor concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 14Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Pain (including joint pain, needle pain, phantom pain)
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	VERY LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 15Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Sleep disturbance/sleepiness
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 16Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Oedema
1 (People aged 25 to <70)	Individual interviews	This symptom was reported but relatively infrequently, specifically mentioning ankles.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 17Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weight loss
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 18Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weight gain
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 19Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Aching body
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 20Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Altered taste
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 21Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Breathlessness
1 (People aged 25 to <70, 70+)	Individual interviews	Most participants reported this at times due to fluid overload caused by renal disease and/or associated anaemia.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 22Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Confusion
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 23Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Gastrointestinal problems (including constipation and diarrhoea)
1 (People aged 25 to <70, 70+)	Individual interviews	Participants reported difficulties related to incontinence and altered bowel habits.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 24Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cramps
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 25Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Depression
1 (People aged 25 to <70, 70+)	Individual interviews	Participants reported feeling depressed as they were unable to do things they were previously able to do.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 26Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Difficulty swallowing
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 27Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Dizziness
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 28Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Dry skin
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 29Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Headaches
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 30Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Immobility
1 (People aged 25 to <70, 70+)	Individual interviews	Most participants suffered from this and had problems with walking or standing.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 31Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Incontinence
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 32Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Insomnia
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 33Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Itching
1 (People aged 25 to <70, 70+)	Individual interviews	Most participants found this problematic and persistent.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 34Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Lack of energy
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 35Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Fatigue
1 (People aged 25 to <70, 70+)	Individual interviews	Most participants reported feeling tired and finding it debilitating.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 36Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Nausea/vomiting
1 (People aged 25 to <70, 70+)	Individual interviews	Most participants suffered from this symptom.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 37Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Pain (including joint pain, needle pain, phantom pain)
1 (People aged 25 to <70, 70+)	Individual interviews	Participants reported different types of pain due to problems.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 38Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Oedema
1 (People aged 25 to <70, 70+)	Individual interviews	Nearly all participants reported this symptom.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 39Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Pins and needles
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 40Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Poor appetite
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 41Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Poor balance
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 42Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cognitive fluctuations
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 43Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Visual disturbances
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 44Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Sore mouth/tongue
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 45Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Trembling
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 46Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weakness
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 47Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weight loss
1 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 48Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Anger
4 (People aged 2 to <16, 25 to <70)	Individual interviews	Participants reported anger due to the complications dialysis added to their lives and people pitying them.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 49Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Anxiety
3 (People aged 2 to <16, 25 to <70, 70 and over)	Individual interviews	Participants reported anxiety about potential problems that could arise from dialysis and the prospect of premature death.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 50Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Blood pressure alterations
2 (People aged 2 to <16, 25 to <70)	Individual interviews	This symptom was reported but relatively infrequently with hypotension as one of the most common symptoms.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 51Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Body image/hair growth
4 (People aged 2 to <16, 16 to <25, 25 to <70, 70+)	Individual interviews	Participants expressed strong dislike in changes to their appearance, such as bloating.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 52Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Breathlessness
3 (People aged 2 to <16, 25 to <70)	Individual interviews	This symptom was reported by some participants as a worsening symptom causing them to return to the hospital and start dialysis.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 53Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cognitive fluctuations
1 (People aged 70 and over)	Individual interviews	Participants reported concern about their memory and remembering to carry out day-to-day tasks.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 54Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cognitive fatigue
5 (People aged 25 to <70, 70+)	Individual interviews	Participants mentioned how weakness and fatigue affected their cognitive abilities, causing difficulty in concentrating after dialysis.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 55Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cramps
7 (People aged 25 to <70)	Individual interviews	This symptom was reported by most participants and typically reported post and during dialysis.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 56Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Decreased mobility
1 (People aged 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 57Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Denial
1 (People aged 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 58Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Depression
10 (People aged 2 to <16, 25 to <70, 70+)	Individual interviews (9) and open ended survey (1)	Participants reported feeling depressed during and after dialysis.	Limitations	Moderate limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 59Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Discomfort
1 (People aged 25 to <70)	Individual interviews	Participants expressed discomfort with the chairs during dialysis.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 60Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Dizziness
5 (People aged 25 to <70, 70+)	Individual interviews	Participants reported dizziness as an adverse effect of dialysis.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 61Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Drowsiness
1 (People aged 70+)	Individual interviews	This symptom was reported after a dialysis session but relatively infrequently.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 62Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Exhaustion
3 (People aged 16 to <25, 25 to <70, 70+)	Individual interviews	Participants reported feeling exhausted after dialysis.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 63Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Fatigue
18 (People aged 2 to <16, 25 to <70, 70+)	Individual interviews	This symptom was reported by most participants as both habitual and following dialysis.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 64Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Malaise
2 (People aged 25 to <70, 70+)	Individual interviews	A common symptom mentioned by participants associated with dialysis.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 65Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Gastrointestinal problems
2 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 66Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Guilt
1 (People aged 25 to <70, 70+)	Individual interviews	Some participants felt guilty that they couldn’t be a good wife or mother.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 67Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Headaches
3 (People aged 2 to <16, 25 to <70)	Individual interviews	Participants reported this relatively infrequently, and after dialysis sessions.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 68Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Helplessness
1 (People aged 70+)	Individual interviews	This was reported by numerous participants.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 69Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Heart problems (including irregular heartbeat)
3 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	LOW
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 70Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Insomnia
5 (People aged 25 to <70, 70+)	Individual interviews	This was a common symptom reported by participants at varying levels of intensity.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 71Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Itching
5 (People aged 25 to <70, 70+)	Individual interviews	This was a common symptom reported by participants as usually intense.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 72Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Loneliness
3 (People aged 25 to <70, 70+)	Individual interviews	Participants reported social isolation associated with lifestyle changes as a result of dialysis.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 73Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Moodiness
1 (People aged 25 to <70)	Individual interviews	This symptom was reported relatively infrequently.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 74Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Nausea/vomiting
4 (People aged 2 to <16, 16 to <25, 25 to <70, 70+)	Individual interviews	This symptom was reported relatively infrequently.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 75Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Numbness
1 (People aged 25 to <70)	Individual interviews	This symptom was reported relatively infrequently.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 76Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Pain (including joint pain, needle pain, phantom pain)
11 (People aged 2 to <16, 25 to <70, 70+)	Individual interviews	Most participants reported a variety of pain problems in their back or joints and pain from the needles used during dialysis.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Substantial concerns about adequacy

Table 77Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Pleural effusion
1 (People aged 25 to <70)	Individual interviews	This symptom was reported by some participants as a worsening symptom	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 78Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Restless legs
2 (People aged 25 to <70)	Individual interviews	Most participants reported this symptom as fairly common.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 79Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Sexual functioning
5 (People aged 25 to <70, 70+)	A combination of individual interviews (4) and surveys (1)	Both patients and their partners often reported changed to their sexual functioning.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 80Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Sleep disturbance/sleepiness
3 (People aged 25 to <70, 70+)	Individual interviews	Participants reported having disjointed sleeping patterns.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 81Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Stress
2 (People aged 16 to <25, 25 to <70, 70+)	Individual interviews	Participants reported feeling stressed due to negative emotions and employment issues.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 82Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Thirst
2 (People aged 25 to <70)	Individual interviews	This symptom was reported by most participants.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 83Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Vertigo
1 (People aged 25 to <70)	Individual interviews	This symptom was reported by most participants and typically reported post and during dialysis.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 84Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weakness
4 (People aged 2 to <16, 16 to <25, 25 to <70, 70+)	Individual interviews	This symptom was reported but relatively infrequently and after a dialysis session.	Limitations	Minor limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 85Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weight loss
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 86Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weight gain
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 87Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Abdominal pain
1 (People aged 25 to <70)	Individual interviews	This symptom was reported but relatively infrequently, related to draining and refilling the dialysis solution, as well as some sleep positions.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 88Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Anxiety
1 (People aged 25 to <70)	Individual interviews	Some participants reported worries about complications, death and feeling afraid about future transplantations.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 89Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Body image
1 (People aged 25 to <70, 70+)	Individual interviews	Participants expressed strong dislike in changes to their appearance, such as bloating.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 90Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cognitive fatigue
2 (People aged 25 to <70, 70+)	Individual interviews	Some participants reported sensations of being mentally tired more dominant than physical tiredness.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 91Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cramps
2 (People aged 25 to <70, 70+)	Individual interviews	This symptom was reported by most participants and typically reported post and during dialysis.	Limitations	Minor limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 92Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Fatigue
5 (People aged 25 to <70, 70+)	Individual interviews	Participants reported this symptom following dialysis.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 93Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Itching
5 (People aged 25 to <70, 70+)	Individual interviews	This was a common symptom reported by participants as usually intense.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 94Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Loneliness
1 (People aged 25 to <70, 70+)	Individual interviews	This symptom was reported relatively infrequently.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 95Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Moodiness
1 (People aged 25 to <70)	Individual interviews	This symptom was reported relatively infrequently.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 96Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Nausea/vomiting
2 (People aged 2 to <16, 16 to <25, 25 to <70, 70+)	Individual interviews	This symptom was reported relatively infrequently.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 97Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Pain (including joint pain, needle pain, phantom pain)
2 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 98Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Sexual functioning
1 (People aged 25 to <70, 70+)	Individual interviews	Both patients and their partners often reported changed to their sexual functioning.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 99Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Sleep disturbance/sleepiness
2 (People aged 25 to <70, 70+)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 100Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Stress
1 (People aged 25 to <70)	Individual interviews	Participants reported feeling stressed when they couldn’t complete household tasks.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 101Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Unstable temper
1 (People aged 25 to <70, 70+)	Individual interviews	Some participants reported experiencing mood changes.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 102Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weight loss
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 103Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weight gain
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 104Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weakness
1 (People aged 25 to <70, 70+)	Individual interviews	Participants reported this as a gradually developing feeling.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 105Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Anxiety
2 (People aged 25 to <70)	Individual interviews	Participants reported feeling anxious after the kidney transplant as they were worried about getting an illness.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Substantial concerns about adequacy

Table 106Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Body image/hair growth
5 (People aged 2 to <16, 25 to <70, 70+)	A combination of Individual interviews (2) and focus groups (3)	Participants expressed strong dislike in changes to their appearance as a side effect to their medication such as bloating and hair growth.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Substantial concerns about adequacy

Table 107Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cognitive fatigue
2 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Substantial concerns about adequacy

Table 108Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Cramps
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 109Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Crumbling bones
2 (People aged 16 to <25, 25 to <70)	Focus groups	Symptom reported with no additional details.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 110Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Depression
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 111Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Dizziness
1 (People aged 25 to <70)	Individual interviews	Some participants with a transplant described their previous experiences and reported feeling dizzy following dialysis.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 112Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Fatigue
5 (People aged 16 to <25, 25 to <70, 70+)	A combination of individual interviews (3) and focus groups (2)	This symptom was reported by most participants as a side effect to transplant medication.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 113Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Fever
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 114Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Fragile skin
1 (People aged 16 to <25, 25 to <70)	Focus groups	This symptom was reported by most participants as a side effect to transplant medication.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 115Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Gastrointestinal problems
1 (People aged 25 to <70)	Individual interviews	This was reported as one of many symptoms participants reported as an adverse effect from transplant medication.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 116Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Hallucinations/nightmares
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Substantial concerns about adequacy

Table 117Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Infection
2 (People aged 16 to <25, 25 to <70)	A combination of individual interviews (1) and focus groups (1)	This symptom was reported by most participants as a side effect to transplant medication.	Limitations	Severe limitations	VERY LOW
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 118Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Itching
2 (People aged 25 to <70)	Individual interviews	This symptom was reported relatively infrequently and as intense.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 119Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Moodiness
2 (People aged 25 to <70)	A combination of individual interviews (1) and focus groups (1)	This symptom was reported by most participants as a side effect to transplant medication.	Limitations	Minor limitations	MODERATE
			Coherence	Minor concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 120Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Nausea/vomiting
2 People aged (2 to <16, 16 to <25, 25 to <70)	Individual interviews	This symptom was reported relatively infrequently.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 121Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Pain (including joint pain, needle pain, phantom pain)
7 People aged (2 to <16, 25 to <70, 70+)	A combination of individual interviews (5) and focus groups (2)	Participant’s reported pain from surgery and transplant medication.	Limitations	Severe limitations	VERY LOW
			Coherence	Minor concerns about coherence
			Relevance	Partially relevant
			Adequacy	Substantial concerns about adequacy

Table 122Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Sleep disturbance/sleepiness
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Substantial concerns about adequacy

Table 123Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Shakiness
1 (People aged 16 to <25, 25 to <70)	Focus groups	This symptom was reported by one group of participants as a side effect to transplant medication.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 124Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Skin cancer
2 (People aged 16 to <25, 25 to <70)	Focus groups	This symptom was reported by one group of participants as a side effect to transplant medication.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 125Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Stress
1 (People aged 2 to <16)	Focus groups	Participants reported the stress they felt in not being able to take part in their normal routine, in being treated differently.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 126Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Oedema
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 127Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Swollen gums
2 (People aged 16 to <25, 25 to <70)	Focus groups	This symptom was reported by participants as a side effect to transplant medication.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 128Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Tinnitus
1 (People aged 25 to <70)	Individual interviews	Participants reported this as an adverse effect from transplant medication with ranging severity.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 129Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Visual disturbances
1 (People aged 25 to <70)	Individual interviews	Participants reported this as an adverse effect from transplant medication.	Limitations	Minor limitations	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially relevant
			Adequacy	Minor concerns about adequacy

Table 130Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weight gain
4 (People aged 16 to <25, 25 to <70)	A combination of individual interviews (1) and focus groups (3)	Participant’s reported rapid weight gain in the first year after the transplant.	Limitations	Severe limitations	LOW
			Coherence	Minor concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 131Summary of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Weight loss
1 (People aged 25 to <70)	Individual interviews	Symptom reported with no additional details.	Limitations	Severe limitations	LOW
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	Minor concerns about adequacy

Table 132Review protocol: symptom recognition

Question number 10

Field	Content
Review question	What are the most important symptoms to recognise for people undergoing RRT or receiving conservative care?
Type of review question	Qualitative
Objective of the review	Provide evidence of the types of symptoms that people undergoing RRT find are most important to them, particular focus on symptoms that: some people may be unaware are related to their condition/treatment are most impactful in terms of quality of life under-recognised by healthcare professionals
Eligibility criteria – population / disease / condition / issue / domain	Adults and children who are being assessed for RRT or conservative management of established renal failure, or who are undergoing RRT or conservative management of established renal failure, their families, carers and healthcare professionals Evidence will be reported separately for: Pre-RRT vs HD vs PD vs TPx vs CM <2, 2 to <16, 16 to <25, 25 to <70, 70 and over
Eligibility criteria – intervention(s) / exposure(s) / prognostic factor(s)	Not applicable
Eligibility criteria – comparator(s) / control or reference (gold) standard	Not applicable
Outcomes and prioritisation	Symptoms will be derived from the evidence identified for this review and not pre-specified. Themes will also be extracted when they discuss the impact and recognition (by person undergoing RRT/CM or by healthcare professional) of specific symptoms. However for information to guide the technical team, relevant symptoms may include: Tiredness Pain Itch Nausea Vomiting Anorexia Weight loss
Eligibility criteria – study design	Qualitative interview and focus group studies (including studies using grounded theory, phenomenology or other appropriate qualitative approaches); quantitative data from questionnaires will only be considered if insufficient qualitative evidence is identified
Other inclusion exclusion criteria	Not applicable
Proposed sensitivity / subgroup analysis, or meta-regression	Not applicable
Selection process – duplicate screening / selection / analysis	No duplicate screening was deemed necessary for this question, for more information please see the separate Methods report for this guideline. Additional qualitative studies were added to the review until themes within the analysis became saturated; i.e. studies were only included if they contributed towards the development of existing themes or to the development of new themes.
Data management (software)	CERQual was used to synthesise data from qualitative studies. Endnote was used for bibliography, citations, sifting and reference management.
Information sources – databases and dates	Clinical search databases to be used: Medline, Embase, CINAHL Date: All years Language: Restrict to English only Supplementary search techniques: backward citation searching Key papers: Not known
Identify if an update	Not an update
Author contacts	https://www.nice.org.uk/guidance/indevelopment/gid-ng10019
Highlight if amendment to previous protocol	Not an amendment
Search strategy – for one database	For details please see appendix B
Data collection process – forms / duplicate	A standardised evidence table format will be used, and published as appendices of the evidence report.
Data items – define all variables to be collected	For details please see evidence tables in Appendix D (clinical evidence tables).
Methods for assessing bias at outcome / study level	The methodological quality of each study was assessed using NGC checklists. Evidence was analysed using thematic analysis; findings will be presented narratively and diagrammatically where appropriate. Findings were reported according to GRADE CERQual standards.
Criteria for quantitative synthesis	Not applicable
Methods for quantitative analysis – combining studies and exploring (in)consistency	Not applicable
Meta-bias assessment – publication bias, selective reporting bias	For details please see section 6.2 of Developing NICE guidelines: the manual.
Confidence in cumulative evidence	For details please see sections 6.4 and 9.1 of Developing NICE guidelines: the manual.
Rationale / context – what is known	For details please see the introduction to the evidence review.
Describe contributions of authors and guarantor	A multidisciplinary committee developed the evidence review. The committee was convened by the National Guideline Centre (NGC) and chaired by Jan Dudley in line with section 3 of Developing NICE guidelines: the manual. Staff from NGC undertook systematic literature searches, appraised the evidence, conducted meta-analysis and cost-effectiveness analysis where appropriate, and drafted the evidence review in collaboration with the committee. For details please see Developing NICE guidelines: the manual.
Sources of funding / support	NGC is funded by NICE and hosted by the Royal College of Physicians.
Name of sponsor	NGC is funded by NICE and hosted by the Royal College of Physicians.
Roles of sponsor	NICE funds NGC to develop guidelines for those working in the NHS, public health and social care in England.
PROSPERO registration number	Not registered

Table 133Database date parameters and filters used

Medline (OVID)

1946 – 11 December 2017

Exclusions

Qualitative studies

Embase (OVID)

1974 – 11 December 2017

Exclusions

Qualitative studies

CINAHL, Current Nursing and Allied Health Literature (EBSCO)

1991 – 11 December 2017

Exclusions

Qualitative studies

Medline (Ovid) search terms

1.	exp Renal Replacement Therapy/
2.	((renal or kidney) adj2 replace).ti,ab.
3.	(hemodiafilt* or haemodiafilt* or haemofilt* or hemofilt*).ti,ab.
4.	(hemodialys* or haemodialys*).ti,ab.
5.	((kidney* or renal or pre-empt* or preempt) adj3 (transplant or graft*)).ti,ab.
6.	(capd or apd or ccpd or dialys*).ti,ab.
7.	or/1-6
8.	(mycophenolic acid or azathioprine or sirolimus or everolimus or tacrolimus or cyclosporin* or steroid or calcineurin inhibitor or anaemi* or anemi* or vitamin d or immunosuppres*).ti.
9.	7 not 8
10.	letter/
11.	editorial/
12.	news/
13.	exp historical article/
14.	Anecdotes as Topic/
15.	comment/
16.	case report/
17.	(letter or comment*).ti.
18.	or/10-17
19.	randomized controlled trial/ or random*.ti,ab.
20.	18 not 19
21.	animals/ not humans/
22.	exp Animals, Laboratory/
23.	exp Animal Experimentation/
24.	exp Models, Animal/
25.	exp Rodentia/
26.	(rat or rats or mouse or mice).ti.
27.	or/20-26
28.	9 not 27
29.	limit 28 to English language
30.	Qualitative research/ or Narration/ or exp Interviews as Topic/ or exp “Surveys and Questionnaires”/ or Health care surveys/
31.	(qualitative or interview* or focus group* or theme* or questionnaire* or survey*).ti,ab.
32.	(metasynthes* or meta-synthes* or metasummar* or meta-summar* or metastud* or meta-stud* or metathem* or meta-them* or ethno* or emic or etic or phenomenolog* or grounded theory or constant compar* or (thematic* adj3 analys) or theoretical sampl or purposive sampl* or hermeneutic* or heidegger* or husserl* or colaizzi* or van kaam* or van manen* or giorgi* or glaser* or strauss* or ricoeur* or spiegelberg* or merleau*).ti,ab.
33.	or/30-32
34.	29 and 33
35.	exp “signs and symptoms”/
36.	symptom assessment/
37.	diagnosis/ or prognosis/
38.	(clinical adj3 (manifest* or feature* or finding* or aspect* or marker*)).ti,ab.
39.	(presenting adj3 (feature* or finding* or factor*)).ti,ab.
40.	presentation*.ti,ab.
41.	(physical adj3 (manifest* or characteristic* or feature* or finding*)).ti,ab.
42.	(sign or signs or symptom* or recogni* or identif* or complain*).ti,ab.
43.	(diagnos* or prognos* or assess* or criteria* or predict*).ti,ab.
44.	or/35-43
45.	34 and 44

Embase (Ovid) search terms

1.	exp renal replacement therapy/
2.	((renal or kidney) adj2 replace*).ti,ab.
3.	(hemodiafilt* or haemodiafilt* or (biofilt* adj1 acetate-free)).ti,ab.
4.	(hemodialys* or haemodialys*).ti,ab.
5.	((kidney* or renal) adj3 (transplant* or graft*)).ti,ab.
6.	capd.ti,ab.
7.	dialys*.ti,ab.
8.	(artificial adj1 kidney*).ti,ab.
9.	or/1-8
10.	limit 9 to English language
11.	letter.pt. or letter/
12.	note.pt.
13.	editorial.pt.
14.	case report/ or case study/
15.	(letter or comment*).ti.
16.	or/11-15
17.	randomized controlled trial/ or random*.ti,ab.
18.	16 not 17
19.	animal/ not human/
20.	nonhuman/
21.	exp Animal Experiment/
22.	exp Experimental Animal/
23.	animal model/
24.	exp Rodent/
25.	(rat or rats or mouse or mice).ti.
26.	or/11-25
27.	10 not 26
28.	health survey/ or exp questionnaire/ or exp interview/ or qualitative research/ or narrative/
29.	(qualitative or interview* or focus group* or theme* or questionnaire* or survey*).ti,ab.
30.	(metasynthes* or meta-synthes* or metasummar* or meta-summar* or metastud* or meta-stud* or metathem* or meta-them* or ethno* or emic or etic or phenomenolog* or grounded theory or constant compar* or (thematic* adj3 analys) or theoretical sampl or purposive sampl* or hermeneutic* or heidegger* or husserl* or colaizzi* or van kaam* or van manen* or giorgi* or glaser* or strauss* or ricoeur* or spiegelberg* or merleau*).ti,ab.
31.	or/28-30
32.	exp symptomatology/
33.	symptom assessment/
34.	diagnosis/ or prognosis/
35.	(clinical adj3 (manifest* or feature* or finding* or aspect* or marker*)).ti,ab.
36.	(presenting adj3 (feature* or finding* or factor*)).ti,ab.
37.	presentation*.ti,ab.
38.	(physical adj3 (manifest* or characteristic* or feature* or finding*)).ti,ab.
39.	(sign or signs or symptom* or recogni* or identif* or complain*).ti,ab.
40.	(diagnos* or prognos* or assess* or criteria* or predict*).ti,ab.
41.	or/32-40
42.	27 and 31 and 41

CINAHL (EBSCO) search terms

S1.	(MH “Renal Replacement Therapy+”)
S2.	((renal or kidney) n2 replace*)
S3.	hemodiafilt* or haemodiafilt* or haemofilt* or hemofilt*
S4.	hemodialys* or haemodialys*
S5.	((kidney* or renal or pre-empt* or preempt) n3 (transplant or graft*))
S6.	(capd or apd or ccpd or dialys*)
S7.	artificial n1 kidney*
S8.	S1 OR S2 OR S3 OR S4 OR S5 OR S6 OR S7
S9.	PT anecdote or PT audiovisual or PT bibliography or PT biography or PT book or PT book review or PT brief item or PT cartoon or PT commentary or PT computer program or PT editorial or PT games or PT glossary or PT historical material or PT interview or PT letter or PT listservs or PT master’s thesis or PT obituary or PT pamphlet or PT pamphlet chapter or PT pictorial or PT poetry or PT proceedings or PT “questions and answers” or PT response or PT software or PT teaching materials or PT website
S10.	S8 NOT S9
S11.	(MH “Qualitative Studies+”)
S12.	(MH “Qualitative Validity+”)
S13.	(MH “Interviews+”) OR (MH “Focus Groups”) OR (MH “Surveys”) OR (MH “Questionnaires+”)
S14.	(qualitative or interview* or focus group* or theme* or questionnaire* or survey*)
S15.	(metasynthes* or meta-synthes* or metasummar* or meta-summar* or metastud* or meta-stud* or metathem* or meta-them* or ethno* or emic or etic or phenomenolog* or grounded theory or constant compar* or (thematic* n3 analys) or theoretical sampl or purposive sampl* or hermeneutic* or heidegger* or husserl* or colaizzi* or van kaam* or van manen* or giorgi* or glaser* or strauss* or ricoeur* or spiegelberg* or merleau*)
S16.	S11 OR S12 OR S13 OR S14 OR S15
S17.	(MH “Signs and Symptoms+”)
S18.	MH symptom assessment OR MH diagnosis OR MH prognosis
S19.	TI clinical AND TI (manifest* or feature* or finding* or aspect* or marker*)
S20.	AB clinical AND AB (manifest* or feature* or finding* or aspect* or marker*)
S21.	TI presenting AND TI (feature* or finding* or factor*)
S22.	AB presenting AND AB (feature* or finding* or factor*)
S23.	TI presentation* OR AB presentation*
S24.	TI physical AND TI (manifest* or characteristic* or feature* or finding*)
S25.	AB physical AND AB (manifest* or characteristic* or feature* or finding*)
S26.	TI ((sign or signs or symptom* or recogni* or identif* or complain)) OR AB ((sign or signs or symptom or recogni* or identif* or complain*))
S27.	TI ((diagnos* or prognos* or assess* or criteria* or predict)) OR AB ((diagnos or prognos* or assess* or criteria* or predict*))
S28.	S17 OR S18 OR S19 OR S20 OR S21 OR S22 OR S23 OR S24 OR S25 OR S26 OR S27
S29.	S10 AND S16 AND S28 Limiters - Exclude MEDLINE records; Human; Language: English

Figure 1Flow chart of qualitative study selection for the review of symptom recognition

Table 134Studies excluded from the qualitative review

Reference	Reason for exclusion
Baillie 2015³	No relevant themes identified
Baillie 2015⁴	No relevant themes identified
Beanlands 2005⁷	No relevant themes identified
Braj 1999⁹	No relevant themes identified
Burns 2017¹⁰	No relevant themes identified
Calestani 2014¹¹	No relevant themes identified
Clarkson 2010¹⁵	No relevant themes identified
Curtin 2002¹⁸	No relevant themes identified
Curtin 2004¹⁷	No relevant themes identified
Friesen 1997²²	No relevant themes identified
Gibbons 2017²³	No relevant themes identified
Hagren 2005²⁴	No relevant themes identified
Henry 2017²⁷	No relevant themes identified
Jablonski 2007²⁹	Inappropriate study design
Jennette 2009³⁰	No relevant themes identified
Lawrence 2013³⁵	No relevant themes identified
Lee 1999³⁷	Incorrect study design
Lovink 2015⁴²	No relevant themes identified
Low 2014⁴³	No relevant themes identified
Mantulak 2016⁴⁴	No relevant themes identified
Moran 2011⁴⁶	No relevant themes identified
Moran 2016⁴⁵	No relevant themes identified
Morton 2011⁴⁷	No relevant themes identified
Murray 2016⁴⁸	No relevant themes identified
Richard 2008⁵⁴	Not available
Sahaf 2017⁵⁵	No relevant themes identified
Tong 2012⁶⁵	No relevant themes identified
Tong 2013⁶²	Inappropriate population (CKD not focused on RRT)
Tong 2015⁶¹	Inappropriate population (early CKD)
Tong 2017⁶⁴	No relevant themes identified
Weiss 2014⁶⁶	No relevant themes identified
Xi 2011⁶⁸	No relevant themes identified
Yalamanchili 2013⁶⁹	Inappropriate study design
Yodchai 2014⁷³	No relevant themes identified

Table 135Studies identified but not included in the qualitative review due to saturation being reached

Reference
Amerena 2009²
Lin 2015³⁸
Shih 1998⁵⁷
Tong 2015⁶⁰
Yilmaz 2011⁷⁰