Evidence review for patient information and support

Evidence review for patient information and support

Barrett’s oesophagus and stage 1 oesophageal adenocarcinoma

Evidence review A

NICE Guideline, No. 231

London: National Institute for Health and Care Excellence (NICE); 2023 Feb.

ISBN-13: 978-1-4731-5007-2

1. Patient information and support

1.1. Review question

What information and support should be provided to patients (or carers or families) who are having or considering follow-up or treatment for Barrett’s oesophagus or stage 1 adenocarcinoma?

1.1.1. Introduction

Barrett’s oesophagus occurs as a result of injury to the mucosa of the oesophagus caused by chronic gastro oesophageal reflux. Characterised by replacement of the normal squamous epithelium with an intestinal columnar epithelium, it is a potentially premalignant condition.

The psychological impact on patients of being diagnosed with a condition that may or may not progress to cancer cannot be underestimated.

Good communication between healthcare professionals and patients is an essential part of ongoing management, considering the needs and preferences of patients carefully. The information should be both verbal and written, in simple language and should include details of the treatments available and the potential outcomes of the various treatments. Patients should also be given details of any Patient Support Groups where known.

1.1.2. Summary of the protocol

For full details see the review protocol in Appendix A.

Table 1

PICO characteristics of review question.

1.1.3. Methods and process

This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual. Methods specific to this review question are described in the review protocol in appendix A and the methods document.

Declarations of interest were recorded according to NICE’s conflicts of interest policy.

1.1.4. Qualitative evidence

1.1.4.1. Included studies

Six studies were included in the review;¹^-⁶ these are summarised in Table 2 below. Key findings from these studies are summarised in the clinical evidence summary below (Table 3). See also the study selection flow chart – Appendix C, study evidence tables in Appendix D, and excluded studies lists in– Excluded studies Appendix F.

Studies included four qualitative studies and two questionnaire studies reporting quantitative data about the information and support needs of people with Barrett’s oesophagus. This information has been extracted and included in the qualitative synthesis to help illustrate the themes emerging from the qualitative studies.

Included studies were on people with Barrett’s oesophagus. No relevant studies including families or carers of people with Barrett’s oesophagus were identified.

Most studies were conducted in the UK with one study being conducted in the USA.

1.1.4.2. Excluded studies

A table of excluded studies can be found in – Excluded studies F.

1.1.5. Summary of studies included in the qualitative evidence

Table 2

Summary of studies included in the evidence review.

See Appendix D for full evidence tables.

1.1.6. Summary of the qualitative evidence

Table 3

Review findings.

See Appendix E for full GRADE-CERQual tables.

Narrative summary of review findings

Review finding 1: Information about surveillance endoscopy

In describing their experiences with endoscopy, some patients recalled their physician explaining details about the surveillance esophagogastroduodenoscopy (EGD) instrument, mechanics of the procedure, specific risks, and likelihood of encountering problems. They were aware of the risks of having an endoscopy with some commenting that they received an information leaflet each time with their appointment letter. On the other hand, several patients mentioned that they did not recall detailed conversations with a physician about endoscopy and were left with many questions about what to expect. They discussed their uncertainty about the endoscopy instrument, the purpose of the procedure, and what to expect after the EGD. Patients who felt informed, respected, and experienced little or no discomfort during an EGD often discussed having a high degree of trust in their doctors and in the endoscopy centre more generally. On the other hand, patients who felt under-informed, disrespected, or experienced pain during an EGD often discussed a loss of trust in their doctors. People reporting positive experiences of endoscopy, reported having received clear explanation of the procedure and the risks involved. People reporting negative experiences reported a lack of information for example about biopsies taking place or details of the procedure. Some patients voiced concerns about the risks of EGD, including the fear that the endoscopy could cause “punctures of the tissue by the instrument” or more generally, one patient worried about “somebody screwing the procedure up”.

A survey of 151 Barrett’s oesophagus patients supported the need for information about endoscopic surveillance with 43 patients (29%) reporting receiving too little information concerning surveillance of Barrett’s oesophagus and 33 (22%) no information at all. The information was reported to be difficult to understand by 24%, with 85% of responders expressing a desire for further information.

Explanation of quality assessment: Minor concerns over methodological limitations with minor concerns across three studies (due to the relationship between researcher and participants not having been considered in two studies, due to sample size not having been based on pre-study considerations of statistical power in the survey); minor concerns about coherence with some people expressing they had received sufficient information and not requiring further information in two studies; no concerns over relevance; no concerns over adequacy with sufficient information from three studies supporting the theme. Overall assessment of confidence was moderate due to minor concerns over methodological limitations and coherence.

Review finding 2: Information about the risk of cancer

People tended to over or underestimated their risk of cancer with some perceiving their risk of developing cancer to be low and not to be anxious or concerned about it. Many expressed there was a lack of information about the risk of cancer but had mixed views regarding how they dealt with the uncertainty and perceived threat of cancer. Inadequate knowledge appeared to enhance cancer worry or reduce the ability to self-manage symptom flares for some, while others reacted positively and took control over their lifestyle. Overestimation of cancer risk was also linked with higher anxiety and worry about cancer whereas people who correctly viewed their risk as low, generally, appeared to have less worry.

A survey of 151 Barrett’s oesophagus patients supported the need for information about the risk of cancer. Respondents tended to underestimate the risk of cancer in Barrett’s oesophagus with 58% estimating that the risk of developing cancer over 10 years was 2% or less. 109 patients (74%) felt that surveillance would reduce the risk of developing oesophageal cancer, with seven (5%) believing that the risk was completely negated and 72 (49%) that the risk was greatly reduced.

Explanation of quality assessment: Minor concerns over methodological limitations with minor concerns across three studies (due to the relationship between researcher and participants not having been considered in two studies and due to the sample size not having been based on pre-study considerations of statistical power in the survey); no concerns in the fourth contributing study; no concerns about coherence; no concerns about relevance; no concerns about adequacy with information from four studies supporting the theme. Overall assessment of confidence was moderate due to concerns over methodological limitations.

Review finding 3: Information about symptom management

Barrett’s oesophagus patients lacked general information regarding managing their symptoms. A small number of the patients stated that they would have liked some additional information with regards to lifestyle changes and tips on how to manage the symptoms that some of them still found troublesome occasionally.

Explanation of quality assessment: Minor concerns over methodological limitations in the contributing study due to the relationship between researcher and participants not having been considered; no concerns about coherence; no concerns about relevance; serious concerns about adequacy due to limited information from one study supporting the theme. Overall assessment of confidence was low due to the concerns over methodological limitations and adequacy.

Review finding 4: Easier to understand information

People at high risk of malignant progression reported usage of medical terminology by doctors as one of the reasons of low health literacy and lack of understanding amongst them.

Information received regarding Barrett’s oesophagus was reported to be difficult to understand by 24% of people undergoing surveillance who responded to a questionnaire survey and 41.5% of people with Barrett’s oesophagus responding to a different survey.

Explanation of quality assessment: Minor concerns over methodological limitations with no concerns in the qualitative study contributing to the theme but minor concerns over one contributing survey (due to sample size not having been based on pre-study considerations of statistical power) and moderate concerns in the other contributing survey (due to lack of information on the analysis and sample); minor concerns about coherence with the majority of participants in one of the contributing surveys reporting the information they had found was easy to understand (n=104; 54.4%); moderate concerns over applicability with no concerns in the qualitative study, but moderate concerns in one survey (due to the closed questionnaire design, the questions of which may have limited the patient views expressed and the lack of information about participant characteristics) and due to the views expressed in the other contributing survey most likely being about information participants had found themselves, rather than the information provided to them by healthcare professionals; minor concerns about adequacy with limited information from three studies supporting the theme. Overall assessment of confidence was very low due to the concerns identified across elements of quality assessment.

Review finding 5: Information about Barrett’s oesophagus

Some people with Barrett’s oesophagus undergoing surveillance held inaccurate views of exactly what Barrett’s oesophagus is, with some over or underestimating their cancer risk. Misleading or inadequate knowledge appeared to have detrimental effects such as enhancing cancer worry or reducing their ability to self-manage symptom flares.

The vast majority (78.5%) of people with Barrett’s oesophagus responding to a questionnaire survey reported they wanted more information about their condition, with only 17.9% reporting they did not want further information.

Explanation of quality assessment: moderate concerns over methodological limitations with minor concerns in one study (due to the relationship between researcher and participants not being considered) and moderate concerns in the contributing survey (due to lack of information on the analysis and sample); no concerns about coherence; minor concerns over relevance with no concerns in one study and moderate concerns in the other study (given the close-questionnaire design, the questions of which may have limited the patient views expressed and the lack of information about participant characteristics); moderate concerns about adequacy with limited information from two studies supporting the theme. Overall assessment of confidence was very low due to moderate concerns over methodological limitation and adequacy and minor concerns over relevance.

Review finding 6: Other types of information

Barrett’s oesophagus patients were questioned about what information would be useful on a Web site. 119 (61%) responded ‘Yes’ to information about current treatment, 96(49.2%) to information about new therapeutic developments, 86 (44.1%) to information about alternative therapies, 80 (41%) to information about clinical trials, 76 (39%) to information about Investigations, 18 (9.2) responded ‘Yes’ to ‘Other’ type of information.

Explanation of quality assessment: Moderate concerns over methodological limitations (due to lack of information on the analysis and sample); no concerns about coherence; moderate concerns over relevance given the close-questionnaire design, the questions of which may have limited the patient views expressed and the lack of information about participant characteristics; serious concerns about adequacy with information supporting the theme limited to one survey. Overall assessment of confidence was very low due to the concerns over methodological limitations, relevance and adequacy.

Review finding 7: Sources of information

Barrett’s oesophagus patients undergoing surveillance reported that they were given information verbally. Nearly all sought further information and were predominantly self-educated via the Internet, newspaper articles, books, or radio shows with the Internet being by far the most common resource used; however, participants expressed concerns and fears over obtaining inaccurate information with no clear guidance on where to find trusted sources online. People who were aware of the risks of having an endoscopy specified that they received an information leaflet each time with their appointment letter.

Survey responders sought information most frequently from the Hospital Doctor (n=137, 70.3%), their GP (n=119; 61%) and less frequently from leaflets (n=23; 11.8%), the Internet (n=18; 9.2%), nurses (n=11; 5.6%), magazine/newspaper (n=11; 5.6%), Family/friends (n=9; 4.6%), NHS Direct (n=8; 4.1%). 105 (53.8%) patients stated that they would use an Internet site if access was available. 79 (40.5%) stated they would not use an Internet site.

Explanation of quality assessment: minor concerns over methodological limitations with minor concerns in two studies (due to the relationship between researcher and participants not being considered) and moderate concerns in the contributing survey (due to lack of information on the analysis and sample); minor concerns about coherence with different views emerging about the use of the internet as a source of information; minor concerns over applicability with no concerns in two contributing studies but moderate concerns in the contributing survey (given the close-questionnaire design, the questions of which may have limited the patient views expressed and the lack of information about participant characteristics); moderate concerns about adequacy with limited information from three studies illustrating the theme. Overall assessment of confidence was low due to the concerns over methodological limitations, coherence, relevance, and adequacy.

Review finding 8: Amount of information

Most people undergoing surveillance for Barrett’s oesophagus expressed that too much information was not a good thing unless the condition was found to have progressed. They were satisfied with the level of information they had received. Although very few seemed to be aware of the major surgical treatment required should the disease progressed, many chose not to explore this further despite being aware that further information was available. Only a small number of people sought further information either themselves or through their partner or friend.

Explanation of quality assessment: Minor concerns over methodological limitations in the contributing study (due to the relationship between researcher and participants not being discussed and the researcher having personally conducted the interviews); no concerns about coherence; no concerns about relevance; moderate concerns about adequacy with relatively limited information from one study supporting the theme. Overall assessment of confidence was low due to the concerns over methodological limitations and adequacy.

Review finding 9: Support and respect from the physician during endoscopy

Effective communication from healthcare professionals in the procedure room appears vitally important in counteracting and helping cope anxiety related to surveillance endoscopy.

A few Barrett’s oesophagus patients undergoing surveillance discussed how well they were treated by their physician, for instance, describing how a physician eased their anxiety upon arriving for the endoscopy procedure and comforted them during the procedure. On the other hand, several participants’ salient memories of surveillance involved feelings of not being treated well or feeling disrespected. Such mentions of “disrespect” often involved patients’ requests being “ignored,” and others reported they were incapable of movement during the procedure because they were “strapped down”. Participants with supportive and caring GPs appeared to have more satisfaction and trust in their GP’s abilities to deal with their Barrett’s oesophagus. Some participants felt their GP was dismissive or lacked knowledge regarding their condition.

Explanation of quality assessment: Minor concerns over methodological limitations with minor concerns in two studies (due to relationship between researcher and participants not having been considered); no concerns about coherence; no concerns about relevance; minor concerns about adequacy due to relatively limited information from two studies supporting the theme. Overall assessment of confidence was moderate due to the concerns over methodological limitations and adequacy.

Review finding 10: Need for surveillance

Patients acknowledged that surveillance allows them to monitor progression of Barrett’s oesophagus to cancer and increases the likelihood of identifying problems in their early stages. Other patients acknowledged that while they may tend to worry about Barrett’s oesophagus, surveillance gives them a sense of control over it. Thus, for many patients, the most salient aspect of the surveillance experience is the sense of control they receive from having Barrett’s oesophagus monitored.

Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to the relationship between the researcher and participants not having been considered); no concerns about coherence; no concerns over relevance; moderate concerns over adequacy with relatively limited information from one study supporting the theme. Overall assessment of confidence was low due to the concerns over methodological limitations and adequacy.

Review finding 11: Post-diagnosis information and support

People reported inadequate attention to their needs and information regarding Barrett’s oesophagus post endoscopy procedure. Some were unaware of their diagnosis until they were asked to attend the next surveillance endoscopy. Many preferred a face-to-face consultation after diagnosis to allow for questions and reported knowledge gaps and key uncertainties at the time of diagnosis.

Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to the relationship between the researcher and participants not having been considered); no concerns about coherence; no concerns over relevance; serious concerns over adequacy with limited information from one study supporting the theme. Overall assessment of confidence was low due to the concerns over methodological limitations and adequacy.

1.1.7. Economic evidence

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

1.1.8. The committee’s discussion and interpretation of the evidence

1.1.8.1. The outcomes that matter most

This review looked at the information and support needs of people with Barrett’s oesophagus or stage 1 oesophageal adenocarcinoma, and their families or carers by analysis of views, opinions and experiences reported. Information emerging from qualitative studies as well as quantitative data, such as incidence rate or frequencies of information preference from questionnaires, were summarised into different themes. Themes were derived from the evidence identified and were not prespecified by the committee. Evidence from four qualitative studies and two quantitative studies were identified for people with Barrett’s oesophagus. No evidence was identified for people with stage 1 oesophageal adenocarcinoma, or for families or carers.

1.1.8.2. The quality of the evidence

Confidence in the evidence base informing the review ranged from very low to moderate. Confidence in the evidence for 3 out of 11 themes was moderate, confidence for 5 out of 11 themes was low, and confidence for a further 3 themes was very low. The primary reasons for downgrading review findings were due to methodological limitations in the contributing studies. These included the relationship between the researcher and the participants not having been explored, concerns about the adequacy of information to support each theme, or limited information supporting the emergent theme. Evidence was occasionally downgraded due to concerns over coherence, with participants within or across studies expressing opposing views about their information and support needs. Also due to concerns over relevance that were due to a lack of information on participant characteristics, or the use of closed questionnaire limiting the views expressed by participants.

1.1.8.3. Findings identified in the evidence synthesis

The committee agreed the findings emerging from the evidence were consistent with the views and needs expressed by people with Barrett’s oesophagus that they see in clinical practice. In particular general information about Barrett’s oesophagus, information about surveillance endoscopy, and risk of cancer.

In the evidence, people with Barrett’s oesophagus reported that a lot of information about the condition was not helpful unless their condition was to progress. In the committee’s experience, people differ in regard to the amount of information they wish to have, with some wanting as much information as possible and others not wishing to have too much. They agreed the amount of information that is given to patients should be assessed on a case-by-case basis by the clinician and should be tailored based on the patients’ individual circumstances and needs.

The evidence also highlighted a need for information and support following their diagnosis of Barrett’s oesophagus. Many people reported knowledge gaps and uncertainties at the time of diagnosis that were not resolved until the next surveillance endoscopy. The committee agreed there is a need for discussion at the time of diagnosis as information and support during this time can lead to a better understanding and less anxiety. Within this context the committee agreed people would be offered a clinical consultation to discuss their diagnosis and any concerns they may have at the initial stages of their treatment.

People reported difficulty understanding the information they were given, that was largely attributed to the use of medical terminology by healthcare professionals. The committee agreed on the importance of providing people with information that is easy to understand. They noted that in clinical practice, people are given a copy of their endoscopy report that is not written in easy-to-understand language and will include medical terminology. There was consensus amongst the committee that the endoscopy report should be adapted to be more useful for people, by containing a lay summary of the endoscopic findings in addition to the technical data included in the report. The committee emphasised that surveillance endoscopy appointments should not be limited to the endoscopic procedure. They also provide an opportunity for clinicians to offer people information and support as well as to discuss the endoscopy findings. The committee was aware that including a lay summary in the endoscopy report and explaining the endoscopy findings during the medical consultation is likely to be more time consuming but agreed this was a very important modification that can improve the understanding of patients.

The evidence highlighted that people with Barrett’s oesophagus often lack information about symptom management. The committee thought that symptom control is an important area that people should receive information about. They agreed there is a need for additional time during Barrett’s surveillance appointments to allow healthcare professionals to give people information about symptom control.

People also raised their experience with different sources of information, including verbal information by healthcare professionals, leaflets, and the internet. Findings reported some expressing concerns about obtaining inaccurate information and a lack of guidance on trusted online sources. The committee emphasised the importance of providing people with written information in the form of leaflets that they can turn to when needed rather than relying on their recollection of information provided verbally.

1.1.8.4. Cost effectiveness and resource use

Cost effectiveness evidence was not sought as this was a qualitative review. The recommendations generally provide guidance regarding the content of information and support specific to people with Barrett’s oesophagus in line with the general principles of provision of information already established in the existing NICE guideline on patient experience in adult NHS services. However, the committee acknowledged that practice among clinicians in dispensing specific support was not universal and that any move towards standardisation would incur some increase in healthcare professional time, most likely during the initial endoscopic surveillance appointment. The magnitude of this increase required is not clear.

1.1.8.5. Other factors the committee took into account

The committee considered that the recommendations on communication, information and shared decision making within the NICE guidelines on patient experience in adult NHS services and shared decision making were applicable and agreed to cross reference to these.

1.1.9. Recommendations supported by this evidence review

This evidence review supports recommendations 1.1.1 to 1.1.4.

1.1.10. References

1.: Arney J, Hinojosa-Lindsey M, Street RL, Jr., Hou J, El-Serag HB, Naik AD. Patient experiences with surveillance endoscopy: A qualitative study. Digestive Diseases and Sciences. 2014; 59(7):1378–1385 [PMC free article: PMC4071114] [PubMed: 24500449]

2.: Bailey K. Barrett’s oesophagus, part 3: A study into patients’ perceptions of surveillance. Gastrointestinal Nursing. 2009; 7(10):34–42

3.: Britton J, Hamdy S, McLaughlin J, Horne M, Ang Y. Barrett’s oesophagus: A qualitative study of patient burden, care delivery experience and follow-up needs. Health Expectations. 2019; 22(1):21–33 [PMC free article: PMC6351418] [PubMed: 30430714]

4.: Cooper SC, El-agib A, Dar S, Mohammed I, Nightingale P, Murray IA et al. Endoscopic surveillance for Barrett’s oesophagus: The patients’ perspective. European Journal of Gastroenterology and Hepatology. 2009; 21(8):850–854 [PubMed: 19598328]

5.: Gough MD, Gilliam AD, Stoddard CJ, Ackroyd R. Barrett’s esophagus: Patient information and the internet. The patient’s perspective. Diseases of the Esophagus. 2003; 16(2):57–59 [PubMed: 12823197]

6.: Griffiths H, Davies R. Understanding Barrett’s columnar lined oesophagus from the patients’ perspective: Qualitative analysis of semistructured interviews with patients. Frontline Gastroenterology. 2011; 2(3):168–175 [PMC free article: PMC5517223] [PubMed: 28839604]

7.: National Institute for Health and Care Excellence. Developing NICE guidelines: the manual [updated January 2022]. London. National Institute for Health and Care Excellence, 2014. Available from: http://www.nice.org.uk/article/PMG20/chapter/1%20Introduction%20and%20overview

Appendices

Appendix A. Review protocols

Review protocol for patient information and support (PDF, 158K)

Appendix B. Literature search strategies

The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual.⁷

For more information, please see the Methodology review published as part of the accompanying documents for this guideline.

B.1. Clinical search literature search strategy (PDF, 153K)

Appendix F. Excluded studies

Clinical studies

Table 16

Studies excluded from the qualitative review.

Final

Evidence review underpinning recommendations 1.1.1 to 1.1.4 in the NICE guideline

National Institute for Health and Care Excellence

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: NBK595770PMID: 37816101

Table 1PICO characteristics of review question

Objective	To determine what information and support is needed by people (or carers and families) who are or considering having treatment or follow-up for Barrett’s Oesophagus or Stage 1 oesophageal adenocarcinoma
Population and setting	Inclusion: Adults, 18 years and over, with Barrett’s Oesophagus or Stage oesophageal 1 adenocarcinoma Exclusion: Adults with Barrett’s Oesophagus beyond Stage 1 adenocarcinoma.
Context	Barrett’s Oesophagus is associated with significant sequelae and can have a notable effect on the person’s life. Adequate information provision for a person with Barrett’s and their family and/or carer can aid care planning and management, improve understanding and accuracy of expectations, and can influence quality of life. This information for a person with Barrett’s and their family and/or carer provided both within the immediate care setting and in the community following discharge can be invaluable.
Review strategy	The synthesis of qualitative data will follow a thematic analysis approach. Information will be synthesised into main review findings. Results will be presented in a detailed narrative and in table format with summary statements of main review findings. GRADE CERQual will be used to synthesise the qualitative data and assess the certainty of evidence for each review finding. Quantitative data from surveys reporting patient information preferences will be reported narratively and presented alongside thematic analysis. Risk of bias will be assessed to ascertain outcome quality.

Table 2Summary of studies included in the evidence review

Study	Design	Population	Research aim	Comments
Arney 2014¹	Structured, in-depth qualitative interviews with framework analysis methodology.	Barrett’s oesophagus patients (n=20) who had received at least one surveillance esophagogastrod uodenoscopy (EGD). Mean age (SD): 62.9 (7.32) years; n=9 were diagnosed with no dysplasia, n=10 with low-grade dysplasia and n=1 with high-grade dysplasia. USA	To define the patient experience of EGD from in-depth qualitative interviews with patients who recently underwent surveillance EGD.	35% completed five or more surveillance EGDs; 25% completed only 1 prior EGD. Mean number (range) of completed EGDs: 4.3 (1-20). None of the EGD procedures were performed using propofol or monitored anaesthesia care; 90% were performed under conscious sedation combined with topical anaesthesia to the back of the throat.
Bailey 2009²	Semi-structured interviews with thematic analysis	Patients enrolled on a Barrett’s surveillance programme in a large teaching hospital. (N=15) Median age: 59 years (36-77) UK	To assess patients’ perceptions, experience, and informational needs about Barrett’s oesophagus to improve the understanding of healthcare professionals and therefore their ability to provide the best care for their patients.	Participants had been on a surveillance programme for a combined total of 92 years, with a mean of 6 years (ranging from 1–21 years). Eleven participants (73%) were receiving 2-yearly surveillance endoscopies.
Britton 2019³	Exploratory qualitative research, part of a concurrent mixed-methods study involving semi-structured interviews with thematic analysis	Patients with Barrett’s oesophagus, enrolled in surveillance at a single general NHS hospital (N=20) Median age= 63 years (42-77 y) UK	To identify and explore factors impacting BO patients’ HRQOL, the follow-up needs of BO patients and patients’ perceptions and attitudes to new models of follow-up care	Participant’s demographics and disease-specific information were also collected from their medical notes and endoscopy reports. Field notes were taken at the time of each interview.
Cooper 2009⁴	Questionnaire study with quantitative analysis	Barrett’s oesophagus patients undergoing surveillance (n=151) Median age (range): 66 (41-79). No dysplasia 90%, indefinite dysplasia 3%, low-grade dysplasia 7%, high-grade dysplasia 0% UK	To examine the experience of patients undergoing endoscopic surveillance for BO, their levels of anxiety and depression, and quality of life and how the relationship with their physicians influences these factors.	The questionnaire included seven questions on patients’ attitudes towards Barrett’s oesophagus and endoscopic surveillance, and perceptions of cancer risk in Barrett’s oesophagus.
Gough 2003⁵	Postal questionnaire with quantitative analysis	Barrett’s oesophagus patients identified via the ‘Endoscribe’ database (n=195). Characteristics not specified. UK	To assess the sources of information for a group of patients with Barrett’s oesophagus; the availability of Internet access for the patients and their views on the future availability and delivery of information.	People with oesophageal adenocarcinoma were excluded.
Griffiths 2011⁶	Qualitative semi-structured interviews with framework for content analysis.	People at high risk of malignant progression from Barrett’s columnar lined oesophagus enrolled in endoscopic surveillance program (N=22) Aged 50-70 years UK	To explore patients’ knowledge and understanding of Barrett’s oesophagus and how the information forming the basis of that knowledge and understanding influenced their self-management.	Those with serious concomitant disease such as cancer, those who were unable to give valid consent, non-English speaking patients and those unable to read or write were excluded.

Table 3Review findings

Main findings	Statement of finding
Information needs
Information about surveillance endoscopy (Arney 2014; Bailey 2009; Cooper 2009)¹^, ²^, ⁴	People need clear and detailed information about endoscopic surveillance, the procedure, its purpose, the risks involved as this can improve the patient’s experience during the procedure and their relationship with their doctor.
Information about the risk of cancer (Bailey 2009; Britton 2019, Cooper 2009, Griffiths 2011)²^-⁴^, ⁶	There is often a lack of information about the risk of cancer in Barrett’s oesophagus that is often a source of anxiety for patients resulting in their over or under estimation of their cancer risk.
Information about symptom management (Bailey 2009)²	Patients lack information about symptom management and potential lifestyle changes that may reduce the burden of their symptoms.
Easier to understand information (Cooper 2009, Gough 2003, Griffiths 2011)⁴^-⁶	Information available about Barrett’s oesophagus was perceived by many to be difficult to understand and this was partly due to the reported usage of medical terminology.
Information about Barrett’s oesophagus (Britton 2019; Gough 2003)³^, ⁵	People required further information about their condition, with some having inaccurate views about what Barrett’s oesophagus; their lack of knowledge enhanced cancer worry and impacted their ability to manage symptom flares.
Other types of information (Gough 2003)⁵	Other types of information people considered useful included information about current treatments and new therapeutic developments, alternative therapies and clinical trials.
Sources of information (Bailey 2009; Britton 2019; Gough 2003)²^, ³^, ⁵	In addition to the information they had been given, people appeared to seek further information mostly from the internet, the hospital doctor or GP and less frequently from nurses, newspapers, NHS direct, family or friends.
Amount of information (Bailey 2009)²	People undergoing surveillance felt too much information was not necessary unless the condition was found to progress.
Support needs
Support and respect from the physician during endoscopy (Arney 2014; Britton 2019)¹^, ³	Perceived lack of support and respect from their physician or GP led patients to have negative experiences of endoscopic surveillance and often to a lack of trust in their doctor, whereas effective communication helped cope with anxiety related to surveillance endoscopy.
Need for surveillance (Arney 2014)¹	Barrett’s oesophagus patients expressed that surveillance allows monitoring the progression of Barrett’s oesophagus, providing a sense of control.
Post-diagnosis information and support (Britton 2019)³	After undergoing endoscopy, people experienced a lack of attention to their needs and a lack of information about their diagnosis with many expressing the need for a face-to-face consultation after diagnosis.

Table 16Studies excluded from the qualitative review

Study	Exclusion reason
Ackerman, G. and Oliver, D. (1997) Psychosocial support in an outpatient clinic. Palliative Medicine 11(2): 167–168 [PubMed: 9156115]	- Conference abstract
Adamson, D., Blazeby, J., Nelson, A. et al. (2014) Palliative radiotherapy in addition to self-expanding metal stent for improving dysphagia and survival in advanced oesophageal cancer (ROCS: Radiotherapy after Oesophageal Cancer Stenting): study protocol for a randomized controlled trial. Trials [Electronic Resource] 15: 402 [PMC free article: PMC4223756] [PubMed: 25336193]	- No relevant information to extract
Adamson, D., Blazeby, J., Porter, C. et al. (2021) Palliative radiotherapy combined with stent insertion to reduce recurrent dysphagia in oesophageal cancer patients: the ROCS RCT. Health Technology Assessment (Winchester, England) 25(31): 1–144 [PMC free article: PMC8182443] [PubMed: 34042566]	- No relevant information to extract
Alberda, C., Alvadj-Korenic, T., Mayan, M. et al. (2017) Nutrition Care in Patients With Head and Neck or Esophageal Cancer: The Patient Perspective. Nutrition in Clinical Practice 32(5): 664–674 [PubMed: 28841392]	- Population not relevant to this review protocol Mixed population of people with head and neck cancer and oesophageal cancer unclear if related to Barrett’s oesophagus and what stage it was
Andreassen, S., Randers, I., Naslund, E. et al. (2007) Information needs following a diagnosis of oesophageal cancer; self-perceived information needs of patients and family members compared with the perceptions of healthcare professionals: a pilot study. European Journal of Cancer Care 16(3): 277–85 [PubMed: 17508949]	- Population not relevant to this review protocol unclear if cancer was related to Barrett’s oesophagus and what stage it was
Andreassen, S., Randers, I., Naslund, E. et al. (2005) Family members’ experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer. European Journal of Cancer Care 14(5): 426–34 [PubMed: 16274463]	- Population not relevant to this review protocol unclear if cancer was related to Barrett’s oesophagus
Andreassen, S., Randers, I., Naslund, E. et al. (2006) Patients’ experiences of living with oesophageal cancer. Journal of Clinical Nursing 15(6): 685–95 [PubMed: 16684164]	- Population not relevant to this review protocol unclear in cancer was related to Barrett’s oesophagus
Andreassen, Sissel (2022) Life situation, information needs, and information seeking in patients with oesophageal cancer and their family members. Dissertation Abstracts International: Section B: The Sciences and Engineering 83(3b): nopaginationspecified	- Population not relevant to this review protocol people with oesophageal cancer unclear if related to Barrett’s oesophagus
Bennett, A. E., O’Neill, L., Connolly, D. et al. (2018) Patient experiences of a physiotherapy-led multidisciplinary rehabilitative intervention after successful treatment for oesophago-gastric cancer. Supportive Care in Cancer 26(8): 2615–2623 [PubMed: 29455302]	- Population not relevant to this review protocol unclear if related to Barrett’s oesophagus
Bennett, A. E., O’Neill, L., Connolly, D. et al. (2020) Perspectives of Esophageal Cancer Survivors on Diagnosis, Treatment, and Recovery. Cancers 13(1): 31 [PMC free article: PMC7796170] [PubMed: 33396253]	- Population not relevant to this review protocol Majority were higher than stage 1
Blom, R. L., Nieuwkerk, P. T., van Heijl, M. et al. (2012) Patient preferences in screening for recurrent disease after potentially curative esophagectomy. Digestive Surgery 29(3): 206–12 [PubMed: 22688597]	- Population not relevant to this review protocol Mixed population of people with adenocarcinoma and squamous cell carcinoma, majority higher than stage 1.
Britton, J., Gadeke, L., Lovat, L. et al. (2017) Research priority setting in Barrett’s oesophagus and gastro-oesophageal reflux disease. The Lancet. Gastroenterology & Hepatology 2(11): 824–831 [PubMed: 28867477]	- No relevant information to extract
Essink-Bot, Marie-Louise, Kruijshaar, Michelle E., Bac, Dirk J. et al. (2007) Different perceptions of the burden of upper GI endoscopy: An empirical study in three patient groups. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation 16(8): 1309–1318 [PMC free article: PMC2039790] [PubMed: 17634755]	- No relevant information to extract
Gilliam, A. D., Speake, W. J., Scholefield, J. H. et al. (2003) Finding the best from the rest: evaluation of the quality of patient information on the Internet. Annals of the Royal College of Surgeons of England 85(1): 44–6 [PMC free article: PMC1964344] [PubMed: 12585632]	- Conference abstract
Graham-Wisener, L., Collins, L., Hanna, J. et al. (2019) The need for enhanced psychological support in esophageal cancer-an exploratory study of the perception of HCPs, patients, and carers. Diseases of the Esophagus 32(5): 01 [PubMed: 30124801]	- Population not relevant to this review protocol unclear if related to Barrett’s oesophagus
Graham-Wisener, L. and Dempster, M. (2017) Peer advice giving from posttreatment to newly diagnosed esophageal cancer patients. Diseases of the Esophagus 30(10): 1–7 [PubMed: 28859397]	- Population not relevant to this review protocol unclear if related to Barrett’s oesophagus
Jacobs, M., Henselmans, I., Macefield, R. C. et al. (2014) Delphi survey to identify topics to be addressed at the initial follow-up consultation after oesophageal cancer surgery. British Journal of Surgery 101(13): 1692–701 [PubMed: 25319127]	- Population not relevant to this review protocol mixed population of health care professionals and people who have had oesophageal cancer surgery, unclear if related to Barrett’s oesophagus and what cancer stage.
Jaromahum, J. and Fowler, S. (2010) Lived experiences of eating after esophagectomy: a phenomenological study. MEDSURG Nursing 19(2): 96–100 [PubMed: 20476519]	- No relevant information to extract
Koshimoto, S., Arimoto, M., Saitou, K. et al. (2019) Need and demand for nutritional counselling and their association with quality of life, nutritional status and eating-related distress among patients with cancer receiving outpatient chemotherapy: a cross-sectional study. Supportive Care in Cancer 27(9): 3385–3394 [PubMed: 30643989]	- No relevant information to extract
Kruijshaar, M. E., Kerkhof, M., Siersema, P. D. et al. (2006) The burden of upper gastrointestinal endoscopy in patients with Barrett’s esophagus. Endoscopy 38(9): 873–8 [PubMed: 17019759]	- No relevant information to extract No relevant themes
McNair, A. G., Brookes, S. T., Kinnersley, P. et al. (2013) What surgeons should tell patients with oesophago-gastric cancer: a cross sectional study of information needs. European Journal of Surgical Oncology 39(11): 1278–86 [PubMed: 23981472]	- Population not relevant to this review protocol People with oesophagogastric cancer not always related to the oesophagus but to the stomach and oesophagogastric junction; majority above stage I.
Mills, M. E. and Sullivan, K. (2000) Patients with operable oesophageal cancer: their experience of information-giving in a regional thoracic unit. Journal of Clinical Nursing 9(2): 236–46 [PubMed: 11111615]	- Population not relevant to this review protocol patients with operable oesophageal cancer unclear if related to Barrett’s
Morowatisharifabad, M. A., Gerayllo, S., Jouybari, L. et al. (2021) Perceived Threats toward Esophageal Cancer among Immediate Relatives of Sufferers: a Qualitative Study. Journal of Gastrointestinal Cancer 52(2): 643–650 [PubMed: 32583362]	- Population not relevant to this review protocol unclear if cancer was related to Barrett’s
Nagao, N., Tsuchiya, A., Ando, S. et al. (2017) The Psychosocial Influences of Waiting Periods on Patients Undergoing Endoscopic Submucosal Dissection. Gastroenterology Nursing 40(5): 373–379 [PMC free article: PMC5625967] [PubMed: 26987103]	- Population not relevant to this review protocol mixed population including people with stomach and colon cancer; no relevant themes
Nicklin, J. (2009) Gastrointestinal cancer: developing an information booklet for patients. Nursing Standard 23(33): 35–40 [PubMed: 19480285]	- Population not relevant to this review protocol Sample of 2 men who had undergone gastrectomy unclear if for Barrett’s oesophagus and their wives
Pickering, Melissa (2009) Patient control mode and likelihood of using the Internet to seek information related to Barrett’s Esophagus. Dissertation Abstracts International: Section B: The Sciences and Engineering 70(2b): 1330	- No relevant information to extract
Pucher, P. H., Coombes, A., Evans, O. et al. (2022) Patient perspectives on key symptoms and preferences for follow-up after upper gastro-intestinal cancer surgery. Supportive Care in Cancer 11: 11 [PMC free article: PMC9046299] [PubMed: 35275293]	- Population not relevant to this review protocol unclear if cancer was related to Barrett’s oesophagus
Ren, J. Y., Zhong, J. D., Yuan, J. et al. (2020) Unmet supportive care needs and associated factors among Chinese discharged patients with esophageal cancer after esophagectomy: A cross-sectional study. European Journal of Oncology Nursing 46: 101767 [PubMed: 32504878]	- Population not relevant to this review protocol People with oesophageal cancer that was dues to squamous cell carcinoma, not Barrett’s oesophagus
Ringborg, C. H., Schandl, A., Wengstrom, Y. et al. (2022) Experiences of being a family caregiver to a patient treated for oesophageal cancer-1 year after surgery. Supportive Care in Cancer 30(1): 915–921 [PMC free article: PMC8636407] [PubMed: 34414468]	- Population not relevant to this review protocol Caregiver of people with oesophageal cancer that most probably was higher than stage 1 and part of which was related to squamous cell carcinoma, not Barrett’s oesophagus
Sjeltoft, J. R., Donsel, P. O., Vad, H. et al. (2020) A radical change: A qualitative study of patients’ experiences of eating and daily living through the first year after oesophageal resection. European Journal of Oncology Nursing 48: 101800 [PubMed: 32746000]	- Population not relevant to this review protocol squamous cell carcinoma
Smets, E. M., van Heijl, M., van Wijngaarden, A. K. et al. (2012) Addressing patients’ information needs: a first evaluation of a question prompt sheet in the pretreatment consultation for patients with esophageal cancer. Diseases of the Esophagus 25(6): 512–9 [PubMed: 22054056]	- Population not relevant to this review protocol Majority had stage higher than T1

Evidence review for patient information and support

1. Patient information and support

1.1. Review question

1.1.1. Introduction

1.1.2. Summary of the protocol

Table 1

1.1.3. Methods and process

1.1.4. Qualitative evidence

1.1.4.1. Included studies

1.1.4.2. Excluded studies

1.1.5. Summary of studies included in the qualitative evidence

Table 2

1.1.6. Summary of the qualitative evidence

Table 3

Narrative summary of review findings

Review finding 1: Information about surveillance endoscopy

Review finding 2: Information about the risk of cancer

Review finding 3: Information about symptom management

Review finding 4: Easier to understand information

Review finding 5: Information about Barrett’s oesophagus

Review finding 6: Other types of information

Review finding 7: Sources of information

Review finding 8: Amount of information

Review finding 9: Support and respect from the physician during endoscopy

Review finding 10: Need for surveillance

Review finding 11: Post-diagnosis information and support

1.1.7. Economic evidence

1.1.8. The committee’s discussion and interpretation of the evidence

1.1.8.1. The outcomes that matter most

1.1.8.2. The quality of the evidence

1.1.8.3. Findings identified in the evidence synthesis

1.1.8.4. Cost effectiveness and resource use

1.1.8.5. Other factors the committee took into account

1.1.9. Recommendations supported by this evidence review

1.1.10. References

Appendices

Appendix A. Review protocols

Appendix B. Literature search strategies

Appendix C. Qualitative evidence study selection

Appendix D. Qualitative evidence

Appendix E. GRADE-CERQual tables

Appendix F. Excluded studies

Clinical studies

Table 16

Table 1PICO characteristics of review question

Table 2Summary of studies included in the evidence review

Table 3Review findings

Table 16Studies excluded from the qualitative review