Evidence review for post-diagnostic information on osteoarthritis for people with osteoarthritis, their family and carers

Evidence review for post-diagnostic information on osteoarthritis for people with osteoarthritis, their family and carers

Osteoarthritis in over 16s: diagnosis and management

Evidence review B

NICE Guideline, No. 226

London: National Institute for Health and Care Excellence (NICE); 2022 Oct.

ISBN-13: 978-1-4731-4740-9

1. Patient information

1.1. Review question

What information on osteoarthritis, including the management of flares, do people with osteoarthritis, their family and carers need after diagnosis?

1.1.1. Introduction

NICE has developed guidance on patient experience in adult NHS services that includes recommendations on information for patients (https://www.nice.org.uk/guidance/cg138). It is also important to identify and address the unique needs of people with osteoarthritis. Currently some of this information is available on national websites, such as the Versus Arthritis (https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis/) however it has not been standardised in any way. Each hospital may have its own locally written information to distribute to patients in clinic. This local information may differ between centres, reflecting local practice, but there is no national standard for this information. The language used in patient information is also contentious for osteoarthritis, with some commonly used terms leading to, or reinforcing misconceptions about the condition and its management. This review seeks to identify the information and support needs of patients with osteoarthritis to inform recommendations for practice.

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.

Themes were derived mainly from those identified in the protocol and in some instances further themes were identified within these, which were included as subthemes.

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

1.1.4. Qualitative evidence

1.1.4.1. Included studies

Forty-five qualitative studies were included in the review;³^–⁵^, ⁸^, ¹¹^, ¹²^, ²⁰^, ²²^, ²³^, ²⁷^, ³²^, ³³^, ³⁷^, ³⁸^, ⁴²^, ⁴³^, ⁴⁹^, ⁵³^, ⁵⁶^, ⁵⁷^, ⁶⁰^, ⁶²^, ⁶⁶^, ⁶⁹^, ⁷⁰^, ⁸³^, ⁸⁷^–⁹¹^, ⁹³^, ¹⁰¹^, ¹⁰⁵^, ¹⁰⁷^, ¹¹²^, ¹¹⁴^, ¹¹⁷^–¹²⁰^, ¹²⁶^, ¹²⁷^, ¹³¹ these are summarised in Table 2 below. Key findings from these studies are summarised in the summary of the qualitative evidence below (Table 3). See also the study selection flow chart in Appendix C, study evidence tables in Appendix D, and excluded studies lists in Appendix E.

A lot of studies were conducted in countries that may not be relevant to a UK population. This has been considered in the grading of the relevance of findings, depending on the theme and whether it is thought likely to differ by population or if it is transferable to the UK. The countries included Australia,⁴²^, ⁵⁷^, ⁶²^, ⁸⁸^, ⁹¹^, ¹⁰⁷ Belgium,¹¹⁸ Canada,⁵^, ¹⁸^, ⁴⁹^, ⁵³^, ⁶⁰^, ⁶⁶^, ⁸⁵^, ⁹³^, ¹¹⁹ France,⁴^, ¹²^, ⁶⁶ Germany,¹¹² Kuwait,³ Hong Kong,²⁷ Norway,²⁰^, ¹⁰¹ Spain,²³ Sweden,¹²⁷ Switzerland,³⁷ Taiwan⁶⁹ and the USA.⁸^, ³⁸^, ⁷⁰^, ¹²⁰

Ten studies were in a UK population.¹¹^, ²²^, ³³^, ⁴³^, ⁵⁶^, ⁸⁷^, ⁸⁹^, ¹⁰⁵^, ¹¹⁴^, ¹²⁶

It should be noted that four studies³^, ⁸^, ⁸⁸^, ¹¹² were in a female only population. The rest of the studies were mixed.

Most of the studies included participants in aged around 60 years old, typically ranging from 40 to 80 years old. Some studies included a younger age range. Goldsmith 2017⁴⁹ included participants who were as young as 19 years, Erwin 2018⁴³ had participants from 28 years old and Egerton 2017⁴² had participants aged 34 years old. Kao 2014⁶⁹ had a low mean age and range at 49.6 (43–55) years old.

There were no studies looking at people with learning disabilities or specific ethnic groups except for McGruer 2019,⁸⁸ who investigated the opinions of Māori adults, which was not relevant to the UK setting.

The majority of the studies included patients.³^–⁵^, ⁸^, ¹¹^, ¹²^, ¹⁸^, ²⁰^, ²²^, ²³^, ²⁷^, ³³^, ³⁷^, ³⁸^, ⁴³^, ⁴⁹^, ⁵³^, ⁵⁶^, ⁶⁰^, ⁶²^, ⁶⁶^, ⁶⁹^, ⁷⁰^, ⁸⁵^, ⁸⁸^, ⁸⁹^, ⁹³^, ¹⁰¹^, ¹⁰⁵^, ¹¹⁴^, ¹¹⁸^–¹²⁰^, ¹²⁶^, ¹²⁷ Whereas Egerton 2017⁴² and Pitt 2008¹⁰⁷ included GPs only; Rosemann 2006¹¹² included GPs and patients. Mann 2011⁸⁷ and Mikhail 2007⁹¹ included patients and health care practitioners. Hinman 2016⁵⁷ included physical therapists, telephone coaches and patients.

One systematic review¹¹⁷ included information as one theme amongst many others, therefore the studies were ordered for inclusion in the review.

1.1.4.2. Excluded studies

Please see excluded studies in Appendix E.

Three studies were excluded because the theme that they were discussing where people gained information for deciding on surgery) had reached saturation point.

Please see excluded studies due to saturation in Appendix E.

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

This review aimed to determine the information that people with osteoarthritis, their family and careers need, during and after diagnosis, to effectively understand and manage their condition.

Table 3

Review findings.

Narrative summary of review findings

Review finding 1: amount of information required (LOW confidence)

Participants wanted different amounts of information in one study,¹¹ but mostly people wanted more information.¹²^,⁶⁶ Health professionals also identified the problem of insufficient information for OA patients.⁸⁷

Review finding 2: Information about the natural history of osteoarthritis (LOW confidence)

People required more information about the origins of the disease otherwise they thought it was due to lifestyle, which often led to feeling guilt or that it was due to bad luck.¹² In one study they found no lack of information, or none was requested, in terms of the cause and pathomorphology, but required more about prognosis.¹¹²

Review finding 3: Information and explanation of osteoarthritis diagnosis (MODERATE confidence)

It was common for people at the initial stage to ask, "something is wrong, what is this hip pain?"20 After being diagnosed they found it difficult to process osteoarthritis-related issues and lacked disease-related information, such as: disease and medication knowledge; daily life activities and movement; dietary and body weight control; management of symptoms; and how to seek support.⁶⁹ Doctors explained that osteoarthritis-related information was scant, and people felt ill-informed during the consultation. Often the information on osteoarthritis and treatment options was basic and variable, depending on the severity of their symptoms and the GPs’ and other HCP’s competence and communication skills.²⁰ They felt they were not explicit enough when explaining the diagnosis.¹² People did not know how to find this information and found little instructional tools to help.⁶⁹ Information helped them accept the diagnosis and reduced the uncertainty and doubt about the future. Knowledge helps patients start a dialogue with Clinicians and become partners in managing their OA.¹² Early education about osteoarthritis, its prognosis and self-management and treatment options was thought important to be discussed and information provided at diagnosis, or soon after, for maximum effectiveness.⁸⁷ They required more information to cope with daily life related to their disease, its origins, the outlook and the role and possible side effects of treatment.¹² GPs felt that diagnosing OA did not pose a major problem to them, it was during the course of OA that the situation was more difficult.¹¹² Some reported little contact following their diagnosis, and that regular review and information about the likely course of OA would be beneficial.⁸⁷

Review finding 4: Sources of information - the HCP (MODERATE confidence)

Patients actively sought information on osteoarthritis and its management from various sources, such as GPs, pharmacists, physical therapists, doctors and health professionals, consumer medicine information leaflets.¹⁸^,²⁷^,⁹¹

It was thought important to have access to professionals with osteoarthritis expertise. Family doctors usually offer advice on issues such as pain management and prescriptions after diagnosis, progression of OA and repercussions.⁵^,⁹³ Other sources of professional expertise are orthopaedic surgeons and sometimes physiotherapists. There is a need for information about what HCPs can do for people with osteoarthritis and what they cannot. There were also concerns of continuity of care and reassessment services.⁹³ Pharmacists were perceived as being reliable sources of information, sometimes preferable to doctors. However, patients were displeased at the variability of the provision of CMI leaflets from pharmacies⁹¹ or limited information provision.¹⁸ Specialists were associated with more positive experiences in terms of information, however some reported that this information was unclear, or they could not understand it.⁵^,²³ No participants received materials on these issues although some said it would have been useful.²³

Review finding 5: Sources of information other than the HCP: social networks (MODERATE confidence)

While some preferred receiving information from professionals,¹¹ some felt doctors were not a good source of information.⁸⁵ Instead preferring the personal opinions of peers, friends, and families.¹¹^,¹⁸^,²⁷^,⁸⁵^,⁸ This provided the ability to compare experiences and gather anecdotal information, on new remedies; operations;⁵^,³ information about OA; methods of managing daily living.⁸⁵ Being in a peer group and learning that others had similar issues, made their present situation, and future one, less intimidating than they previously thought.¹⁰¹ The experience of others could be positive, which facilitated activity,⁸⁵ but could also be negative for managing osteoarthritis.⁸⁵ Learning how they found ways to handle daily life challenges inspired them to take a positive attitude to coping with their disease and to support others by sharing their experiences with them.¹⁰¹

Review finding 6: Sources of information other than the HCP: self-directed information and community services (MODERATE confidence)

Participants also actively accessed various other sources of information such as the internet, the media, medical books, and experts on television or in classes.⁵^,¹⁸^,⁹¹^,¹¹² However, there were often problems in understanding and trusting the information that they received from these sources.¹⁸^, ⁵ Some also found it could be overwhelming.⁵ They actively and purposefully sought out information about arthritis and their health.⁸ Often it was too hard to find relevant and credible information on the internet. It was often too technical and not specifically related to them.⁶² It was often after diagnosis that people were wishing additional information (from that provided by their doctor), on the condition and potential treatments. They used the internet to find this as it was convenient to access the medical information. In one study people found the internet user’s guide enabled them to search and identify more relevant and scientific website information.⁶²

Non-profit organisations were used as a source of information regarding osteoarthritis, but not all participants were aware of what services were available. Those who were aware were unclear of the services that were offered. Some were disappointed that a hospital-led education programme was discontinued.⁵ People felt that more dedicated osteoarthritis community resources, with ongoing support, were required.⁵

Review finding 7: Delivery of support

Subthemes: informing and support (LOW confidence), communication skills (MODERATE confidence).

Informing and support

There was some contradictory evidence for whether people were being well-informed about osteoarthritis. Some reported positive experiences with GPs,³³ however others reported a lack of information provision and support from their practitioners.⁴^,¹²^,³³^,⁴³ Some found GPs trivialised the condition,⁴^,⁴³, misunderstood its impact⁴³ and suggested it is part of the normal ageing process.⁴ Some felt that professionals still thought of osteoarthritis as an old person’s disease and were not aware that it can present differently, and in all ages.⁴³ Osteoarthritis was not treated as a priority and appointments and assessments were often rushed,⁵^,¹²^,²⁰^, ⁸⁷^,¹²⁶ with the practitioner having little time to listen, understand or explain.⁴^,¹²^,³³^,⁸⁷^,⁹¹ This made the participants feel that the practitioners were distant, tactless, not concerned, or informed.⁴^,¹² They wanted GPs to be more attentive, providing more care and information.⁵^,³³ They felt GPs had a lack of knowledge of osteoarthritis,⁴^,¹²⁶ and management options.³³ There were positive experiences from recommendations provided by doctors for knee OA management, and for being listened to and offering hope for the future.³³

They did not expect nurses and AHPs to know everything about OA, but they did expect them to have basic rheumatology training and to know who can be affected. Suggested strategies for managing time pressured interactions, included tailoring information and providing essential information first. Presenting the risk in a patient-friendly way was perceived as a challenge to practitioners.⁹¹ Advice and response to questions, particularly about topics highlighted in the media, were generally good, but patients often felt that they had to seek information rather than being given it spontaneously.¹² Most of the people did not actively seek information during consultations.²⁰ This was explained partly by the fact that they did not know what to ask specifically and because the GP was not perceived to have the necessary expertise about osteoarthritis. A common finding was that people did not receive general information about osteoarthritis and pain management from their GP.²⁰ The lack of post examination advice left some participants feeling at times that their concerns were invalid.¹²⁶

Communication skills

People wanted practitioners to participate in an authentic teaching process, wishing more clarity, accessibility, and simplicity.¹² They wanted clear explanations, and thought their doctor would help them explain their disease and the difficulties they encounter.¹² They did not want doctors to use jargon, which they did not understand.⁴ Communication skills were thought crucial in some exchanges, particularly regarding pain. When the practitioner was silent, the patient interpreted this as powerlessness and stopped asking questions. Saying ‘I dont’ know’ and be sent for a second opinion was more acceptable.¹² Inappropriate gestures generated anxiety, for example a shrug was not thought a substitute for a clear answer. Some lack of dialogue seems linked with avoidance strategies, such as minimizing suffering, using fatalistic wordings and being difficult to approach.¹² Computers were a barrier to communication while facial expression and body language enhanced communication.¹² It was thought that there was a strong requirement for practitioners to help in the sharing of information to older people due to their process and preferences, also they preferred a more authoritative model of interaction. If the physician does not make a direct recommendation, and the person wants a direct recommendation then they could defer the decision as a preferred interaction.⁶⁰

Review finding 8: self-management strategies

Subthemes: self-management (MODERATE confidence), self-help groups (MODERATE confidence), pain management (MODERATE confidence), exercise (MODERATE confidence), and weight loss (LOW confidence).

Self-management

Patients found self-management useful and efficacious.²⁷ They wanted self-management skills to help manage their symptoms, to made decisions and have control of their OA.⁶⁶ Patients felt they required more than typical health literacy or self-help resources, preferring more detailed knowledge about how their osteoarthritis is likely to progress, the extent of their OA, evidence-informed management strategies, and how to deal with changes in mobility.⁹³ They wanted the information to be specific to them, comprehensive and straightforward.⁹³ Currently, patients scout out their own information, and need trustworthy information for a range of OA specific resources.⁹³ Several of the participants with OA felt that they had not been made fully aware of the different management options and had not been given adequate information to make an informed decision about how to manage their condition. Participants also felt that they could be given more advice on the day-to-day management of their OA⁴³^,⁶⁶

Self-help groups

GPs mostly did not inform patients about self-help groups or community level offers because they had a lack of information and frustration about the impact of this information such as patients not participating in these services. However, patients wanted basic information on self-help groups, but were unsure of the possible benefits and had reservations about them.¹¹² Being able to signpost people to sources of help was an important aspect of care that participants strongly felt that ail community-based nurses and AHPs should be able to do.⁴³

Pain management

They felt they had a lack of information about pain and how to deal with the changes in pain.⁹³^,⁶⁶^,¹¹² They wanted explanations for the pain and reassurance regarding the cause of it, especially when there was increased intensity or frequency of abnormal symptoms (Thomas 2013)¹²⁶. They wanted to know how to manage it, heal it if possible, and make sure it does not get worse.⁶⁶ Participants predominately saw their GP, despite additional health care options being available. There was a lack of knowledge regarding other options, and some perceived the view of the GP to be final.¹²⁶ The participants felt that community-based nurses and AHPs should be able to give some basic advice on pain management.⁴³

Treatment advice

A small amount of participants in one study wished to be better informed of their problems and the related treatments.²⁷ Another study’s participants thought there was too emphasis on analgesics for managing symptoms.¹²⁶ There was dissatisfaction with therapeutic options, which treat the symptom not the cause. They felt prescribed medication was the default and alternative strategies were not recognised or seen as efficient by their GPs⁴^, ⁵, but they would prefer to hear about these from them.⁵ They wanted to learn about possible non--pharmacological pain management options as they were worried about long term effects of medication and believed there were alternatives.⁶⁶ One study found that the debate about the safety of NSAIDs has led to more discussion between the patient and practitioner and patients sought out more information.⁹¹ People felt that GPs were not explicit enough when explaining the benefits between different drugs.¹²They wished specific information about the type of treatment that will match the level of severity, and know when they should return to an HCP.⁹³

Exercise and weight loss advice

Patients wanted advice on weight management and exercise.⁶⁶ Patients reported that their GP had tried to motivate them repeatedly and had explained the general effects of lack of exercise and being overweight. They did not mention any types of exercise or other possibilities, and any directions given were mostly vague.¹¹² Advice from health professionals, physiotherapists and social workers was mainly encouraging exercise, with advice about specific exercises, referring to gym and advice to walk (even if it is difficult);⁵⁶^,²³ some received positive feedback for exercising in water or using an exercise bike to reduce the impact on their joints.²³ Also advising people that group exercise would improve motivation.²³ Sometimes the advice was vague or absent, and occasionally exercise was discouraged.⁵⁶ In one study all people expressed a desire for advice and guidance, but in different ways, to exercise.¹²⁷

Participants referred to the importance of giving and receiving information and of being monitored and, therefore accountable to someone else. The impact of this feeling of accountability was to increase their motivation to exercise. Patients with knee OA described feeling accountable to their physical therapist and not wanting to let the therapist down.⁵⁷ All people spoke about the instrumental role of health care providers in influencing and encouraging physical activity. People expressed that if their physician advocated exercise, they would be eager to adopt it. In addition, people desired more knowledge and specific guidance relating to physical activity indicating that if they were told what to do and how to do it by their doctor then they would do it.¹¹⁹ Lack of knowledge regarding respective offers, lack of mobility and a lack of motivation for reasons for not exercising.¹¹²

GPs give advice and recommendations regarding behaviour interventions such as weight loss, but do not focus on increasing motivation, which was considered to have a low success rate. Participants were aware that they were overweight but found losing weight or keeping weight off after losing it difficult despite help from dieticians, endocrinologists, and acupuncture. Some had received leaflets about diets.²³

Review finding 9: Management of osteoarthritic flare-ups (VERY LOW confidence)

There was little evidence pertaining to information about management of flares. In one trial it was noted that one participant wanted explanations of why and how the dose should be increased when there is a flare--up, and why it decreased otherwise.¹² In another study participants felt that most consultations focused on the person’s presenting problem, typically a symptom flare, with less emphasis on long--term self--management.¹⁰⁷

Review finding 10: Referral (LOW confidence)

People who were referred to other practitioners by a sealed letter from their GP felt left out. They wondered about the relevance of such referrals, and the real benefits for themselves and their disease management.¹² GPs who were either more likely or less likely to refer reported they perceived information provision about the person’s condition as part of their professional role, and this constituted a barrier to referral if they perceived that information provision was the sole function of a self--management programme.¹⁰⁷

Review finding 11: sources of information on surgery

Prior to surgery (MODERATE confidence)

Many of the participants had exhausted all other resources, including their failed treatments which led them to research arthroplasty through books and information over the internet. Some were informed by health professionals including physicians/surgeons.⁵³^,³⁸^,⁸⁹ They provided the participants with more technical information about the surgery such as what was going to be replaced. Information obtained from doctors influenced the participants’ expectations of surgery. Most were not expecting a perfect recovery.⁵³ Often participants preferred lay sources who received surgery and shared their experiences³⁸^,⁵³^,⁶⁰^,⁷⁰^,⁸⁹^,¹⁰⁵ to see whether they would recommend it and gave them confidence to have the surgery.⁵³ Women expressed the need for more information about risks of surgery and surgical outcomes.¹⁰⁵ All the data they collected led to an increased understanding of the procedure.⁵³^,³⁸ When information was provided, participants’ anxiety about the procedure appeared to lessen.⁸⁹ They wanted to know if those who had surgery managed to resume their usual activities.⁵³ Of importance was the lack of questions surrounding the process or the acute postoperative phase. Many did not ask about the pain and limitations faced by these people just after their surgery. None of the participants asked about the rehabilitation that would be required. The focus was on the ultimate outcome of the surgery.⁵³ Participants sought out information from a variety of sources, and coupled with the pain and intrusiveness of the condition, the decision to undergo surgery was made.⁵³ There were a number of criticisms regarding the provision of information. Several participants perceived that they had not been given any other treatment options then a total joint replacement. Several searched for their own information. More information regarding medication would have been useful with many having been told that it was paracetamol or nothing to manage their pain.⁸⁹ Participants showed that improved communication about total joint arthroplasty is also needed. Many people showed evidence of poor information of trust in the procedure, despite having received detailed risk/benefit information. This casts doubt on their receptiveness to the utility of total joint arthroplasty in their individual cases, as well as on the effectiveness of the way the information was presented.⁶⁰ Specific education including specific information being available early to prevent the propagation of myths was thought as a strategy to help people better manage their OA.⁵ Participants had received the advice to undertake TKA very late, part of the delay was thought that clinicians not taking into consideration treatments already received by previous Clinicians. A longer delay came from the persons deliberation on going for the operation with factors such as fear of operating, seeking encouragement and approval from family and lack of information about the procedure and the outcome.³ Advice and information pertaining to the proposed surgical procedure, health maintenance issues, exercise, use of walking aids, weight control and symptom control were limited and, in many instances, considered by the participants to be completely absent. There were no consistent healthcare professional-led education/information sessions in place by which individuals could receive information, guidance, advice, or support. In the event of an individual knowing someone who had undergone similar procedures, those individuals considered themselves at an advantage in being able to share experiences and ask for ‘tips’ in coping with various activities. The level and type of information received was down to luck, opportunity, and persistence.

Review finding 12: Preparation and recovery from surgery (VERY LOW confidence)

Informational support: Information is very important in the preparation and recovery from TKA. Information was received though both formal clinical sources and informal personal sources. Although pre-surgical education was considered a key form of informational support, the provided information was often insufficient and some found it not meaningful due to being difficult to understand or remember, or due to conflicting messages. Participants felt overwhelmed and anxious before surgery making retaining information difficult. Surgeons were key sources of information also participants wanted more information than they received. Surgeons are often matter of fact, and not readily providing information, and participants felt overwhelmed which led to them not asking prepared questions. When surgeons took time to provide sufficient information, this was appreciated and improved the experience. The most frequent type of informational support identified as needing improvement was information on pain expectations and pain management. Participants felt that there should be a ‘go to’ clinical person to answer questions or that their surgeon should be available to discuss pain and recovery. Participants also wanted to understand the variety of TKA recovery trajectories so they could be assured they were on some sort of a track to recovery, and often compared their trajectory to others’⁴⁹. One study³² found educational videos provided opportunities to address any knowledge gaps and help in decision-making regarding surgery, but some felt the videos shifted responsibility of decision-making from surgeons to themselves.

Many participants wanted more personal and higher quality interactions with surgeons, including both emotional support and support with their health needs, including information support. Participants wanted empathetic surgeons though this was not often experienced, impeding patient reassurance. There is often a mismatch between the patients’ and surgeons’ perspectives, including surgeons lacking empathy for the patient experience and not seriously investigating unresolved post-surgery problems. Physiotherapists provided key clinical support and are critical. Communication skills, empathy, time, and tailoring were key. Inadequate physiotherapy was caused by waiting for too long after surgery, and patients sometimes have to self-advocate. Family doctors sometimes assist with pain and recovery advice.⁴⁹

Review finding 13: Knowledge and expectations of physiotherapy (VERY LOW confidence)

There was a division among participants for knowledge and expectations of physiotherapy. Some did not have a lot of knowledge about physiotherapy. Others knew about it based on previous treatments and preoperative education. All believed that physiotherapy was beneficial for their recovery. Those who had expectations mentioned increasing their range of motion, learn to walk and use stairs, and strengthening the muscles as what they would be doing as part of their rehabilitation. Some expected therapy to be difficult and self-directed. They just wanted to perform regular daily activities without pain.⁵³ Participants receiving their first prosthesis have an imprecise idea of what rehabilitation will entail. They will need physiotherapy, but cannot evaluate its duration or its implementation. Participants with prior arthroplasty rely on their prior experience, and remember the difficulties encountered.³⁷ They would like personalised plans and professional opinions and face to face contact with an instructor to their confidence in carrying out the physical activity.⁹⁰ Many thought that education contributed to buy-in of treatment. Participants talked about pathology and consequences of OA and provided education about treatments like exercise. Most targeted treatment to a person’s goals or interests, taking into consideration their personal context to fit in with daily life demands or focusing on a couple of important exercises to keep it manageable. Some told encouraging stories of people who had improved with physical therapy, to have buy in of management.⁸³

Table 4

Summary of the quality of evidence: amount of information required.

Table 5

Summary of the quality of evidence: information about the natural history of osteoarthritis.

Table 6

Summary of the quality of evidence: information and explanation of osteoarthritis diagnosis.

Table 7

Summary of the quality of evidence: sources of information – the HCP.

Table 8

Summary of the quality of evidence: sources of information other than the HCP: social networks.

Table 9

Summary of the quality of evidence: sources of information other than the HCP: self-directed information and community services.

Table 10

Summary of the quality of evidence: delivery of support.

Table 11

Summary of the quality of evidence: self-management strategies.

Table 12

Summary of the quality of evidence: management of osteoarthritis flares.

Table 13

Summary of the quality of evidence: referral.

Table 14

Summary of the quality of evidence: surgery.

Table 15

Summary of the quality of evidence: knowledge and expectations of physiotherapy.

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 quality of the evidence

Overall, the evidence base had mainly moderate to low quality rating. Generally, the study limitations were minor, mainly due to unclear relationship between the researcher and the patient. The evidence was downgraded for relevance where it was thought not relevant to the UK or was not entirely related to the review question or where there was an inadequate amount of evidence to support the findings. The committee had confidence in a lot of the evidence as it represented the viewpoints of patients and health care practitioners.

The evidence on the theme ’amount of information required’ had low confidence, there were minor methodological limitations from unclear or a possibly biased, relationship between researcher and patients; small sample size in one study and possible selection bias. Furthermore, two of the studies were in a non--UK population, therefore amount of information provided may differ by population.

The finding information about the natural history of osteoarthritis had low confidence, there were few studies informing this finding and there was possible selection bias and lack of information on relationship between researcher and participants. There was a lack of coherence between the studies in whether people wanted more information on the origins of the disease. One study was in a French population so may not be applicable to a UK population.

Information and explanation of osteoarthritis diagnosis was graded moderate as it had only minor limitations mainly from unclear researcher and patients’ relationship and selection bias. There were no concerns about coherence or adequacy. The majority of studies (3/5) were in a UK population.

Sources of information – the HCP had moderate quality rating as it had an adequate number of studies contributing to the finding and it was a coherent theme. There were minor limitations from unclear relationship between the researcher and participant, one study had further limitations as there was not enough information and another could have been more biased towards more motivated participants.

Sources of information – other than the HCP: social networks had moderate quality rating as there were no concerns for coherence or adequacy and although the participants were from a range of countries, this theme was thought not to be specific to the UK. There were minor limitations such as unclear relationship between researcher and participants; and lack of details; lack of generalisability to all people with OA.

Sources of information other than the HCP: self-directed information and community services was graded moderate quality. There was an adequate amount of studies, and minor limitations included unclear relationship between researcher and participants; one study with a very small sample size and one with limited information. There was some studies which were from other countries which may not be directly applicable to a UK population, however the theme of self-directed information is likely to be transferable, whereas community services may not be.

Delivery of support. Subthemes: informing, support and communications had low ratings of quality as there were minor limitations and minor concerns about coherence and adequacy. The minor limitations varied by study. Self-management strategies: sub-themes of information required, self-help groups, pain management and treatment advice had moderate quality ratings due to minor limitations. There were no concerns about coherence, relevance or adequacy. Exercise and weight loss was graded as low quality due to minor limitations and minor concerns about coherence in findings.

Management of osteoarthritic flares had a very low quality grading as there were minor limitations in the study due to sample size and the generalisability of results; the two studies were not coherent in their findings, here were concerns of relevance for the finding as it was in non--UK populations and the theme from one study was one participant.

Referral was graded low as there were only 2 studies with minor limitations, and concerns on the relevance due to non--UK populations and the theme being related to the services provided.

Surgery: subthemes: prior to surgery was graded as moderate quality as there were minor limitations and a lot of studies included in the theme; preparation and recovery from surgery was graded as very low as only one study was included and there were minor limitations. The theme was also only partially applicable to the review.

Knowledge and expectations of physiotherapy was supported by very low quality evidence as most was relevant to patients undergoing surgery and there was little coherence in findings.

1.1.8.2. Findings identified in the evidence synthesis

The evidence found suggested that more information is required, with some saying they had varying requirements. Most participants wanted more information about the origins of osteoarthritis to dispel any misconceptions they have about why they have it. They wanted explicit information about what their diagnosis meant for the future and to process their diagnosis. They wanted information on prognosis, self-management, and treatment options soon after diagnosis. There are a variety of HCPs who can provide information, but patients thought it important to have access to those with osteoarthritis expertise. They needed to know where they could get reliable information from and it to be clear and understandable. Many relied on sources of information from peers, friends and families as having people with similar issues made their situation less intimidating. They often accessed sources of information such as the internet, but it was thought unreliable and lacked relevance to them. There were non--profit organisations but there was a need for awareness of services available. There was a theme of a lack of information provision and support from practitioners. They wanted clear explanations and no jargon. Self-management strategies were thought to be useful and efficacious. They wanted self-management skills, in particular to help them manage their condition. They wanted to know about self-help groups and pain management. They felt medical treatment was the default and alternatives were not considered by HCPs. They wanted advice on exercise and weight loss that would be specific to them and to be monitored for accountability to increase motivation.

There was little evidence on management of osteoarthritis flares, but one study found they wanted to know why and how the dose should be increased when there is a flare up. Referrals were often by sealed letter which left the patient out of the process. There were themes around surgery, but this was less relevant to this review. There was variation in knowledge of physiotherapy, but it was thought beneficial for recovery.

Overall, participants wanted information and they wished it to be tailored to them. From understanding the natural history, identifying, and addressing their misconceptions to managing their prognosis and the benefits of treatment. They wanted knowledgeable, reliable sources of information. They wanted information on exercise that was specific to them that would be motivational; and how to manage their day to day pain and any changes in pain. They wanted to know where they could get additional information from, such as support groups and peer support. The committee found most of the evidence to be representative of their experience of what patients’ information requirements were and therefore used the findings with their expert opinion to form the recommendations.

The committee agreed that the patient experience guideline should be accessed for general guidance on patient information. In particular, they agreed that the recommendations relating to knowing the patient as an individual and tailoring healthcare services for each patient were particularly relevant. They discussed tailoring information and how each patient should have an individualised plan, with ongoing goals jointly agreed with the leading clinician. It was agreed that this should encourage patient motivation and ownership in sharing care. Furthermore, many of the people are likely to be elderly and have co-existing health conditions, therefore the lead Clinician should co-ordinate this information to ensure that the patient’s other ongoing treatments can be optimised. The committee agreed we need to cross refer to the multi--morbidity guideline (NG56) for recommendations relating to this.

The committee decided to make research recommendations as there was no evidence which looked at the needs for information provision from different ethnic and socio-economic groups and those with learning disability, health literacy issues and severe mental illness and so research would be useful within these instances to see the different amount and provision of information required for these groups. Furthermore, there was little information on one of the areas that the committee had flagged prior to the review, information on management of flares, therefore a research recommendation was made so this could be explored more.

1.1.8.3. 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 osteoarthritis in line with the general principles of provision of information already established in the existing NICE Patient Experience Guideline and so were not considered likely to have a substantial resource impact over and above this.

1.1.8.4. Other factors the committee took into account

The committee agreed that the patient experience guideline covers how to inform the patient generally. This guideline suggests to ‘advise the patient where they might find reliable high-quality information and support after consultations, from sources such as peer to peer support, national and local support groups, networks and information services.’ This was added to with more specific details for those with osteoarthritis. The committee also discussed presenting the information in a format and language (simple English language or its translation) which will be understood by the patient.

The committee wished to highlight that the language which practitioners use within the consultation was important.

1.1.9. Recommendations supported by this evidence review

This evidence review supports recommendations 1.2.1 to 1.2.3. Other evidence supporting these recommendations can be found in the findings of various other evidence reviews.

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Appendices

Appendix A. Review protocol

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Appendix B. Literature search strategies

What information on osteoarthritis, including the management of flares, do people with osteoarthritis, their family and carers need during and after diagnosis?

The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual.⁹⁸

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

Appendix E. Excluded studies

Table 17

Studies excluded from the qualitative review.

Table 18

Studies identified but not extracted due to saturation.

Appendix F. Research recommendations – full details

F.1. Research Recommendations 1 & 2

What information on osteoarthritis, including the management of flares, do people with osteoarthritis, their family and carers need after diagnosis?

What information do people with osteoarthritis from different ethnic and socio-economic groups and those with learning disability, health literacy issues and severe mental illness (and their family and carers) need?

F.1.1. Why this is important

There was little evidence on what information patients wanted after diagnosis, in particular information on managing flares. Therefore more research is required regarding what to inform the patient in order that they can self-manage. Furthermore, there was no evidence which looked at the needs for information provision from different ethnic and socio-economic groups and those with learning disability, health literacy issues and severe mental illness and so this needs further exploration.

F.1.2. Rationale for research recommendations

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F.1.3. Modified PICO table: What information on osteoarthritis, including the management of flares, do people with osteoarthritis, their family and carers need after diagnosis?

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F.1.4. Modified PICO table: What information do people with osteoarthritis from different ethnic and socio-economic groups and those with learning disability, health literacy issues and severe mental illness (and their family and carers) need?

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Final version

Evidence reviews underpinning recommendations 1.2.1 to 1.2.3 and research recommendations in the NICE guideline

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: NBK590295PMID: 37036918

Table 1PICO characteristics of review question

Objective	To determine the information that people with osteoarthritis, their family and careers need during and after diagnosis to effectively understand and manage their condition.
Population and setting	Inclusion: Adults (age ≥16 years) with osteoarthritis affecting any joint Family members of adults with osteoarthritis affecting any joint Carers of adults with osteoarthritis affecting any joint Healthcare professionals or experts with an interest in osteoarthritis Exclusion: Children (age <16 years) People with conditions that may make them susceptible to osteoarthritis or often occur alongside osteoarthritis (including crystal arthritis, inflammatory arthritis, septic arthritis, diseases of childhood that may predispose to osteoarthritis, medical conditions presenting with joint inflammation and malignancy).
Context	Themes will be gathered from the evidence identified for this review and not stated prior to this. Topics may include (but will not be limited to): Self-management strategies Management of osteoarthritic flares Medication use (including rescue medication) Future management options (e.g., surgery) Delivery of support Psychological support Information sources other than healthcare professionals (e.g., support groups, online resources) Addressing misconceptions related to osteoarthritis Information about the natural history of osteoarthritis Information and explanation of osteoarthritis diagnosis Pragmatic ways of applying management plans to daily living
Review strategy	Synthesis of qualitative research. Results presented in narrative format. Quality of the evidence will be assessed by a GRADE CerQual approach for each review finding.

Table 2Summary of studies included in the evidence review

Study	Design	Population	Research aim	Comments
Alami 2011⁴	Semi-structured face-to-face interview	81 patients with knee osteoarthritis and 29 practitioners	To identify the views of patients and care providers regarding the management of knee OA and to reveal potential obstacles to improving healthcare strategies
Ali 2018⁵	Semi-structured face-to-face interview with hermeneutic phenomenology methodology	20 people with osteoarthritis aged >65 years	To better understand the lived experiences and identify ways to improve the care that is available to community-dwelling seniors with OA in urban and rural communities
Al-Taiar 2013³	Focus groups with thematic analysis	Women with severe knee osteoarthritis on the waiting list for TKA	To explore the pain experience and mobility limitation as well as the patient’s decision making process to undertake TKA
Baird 2003⁸	An interpretative descriptive study using interviews with a phenomenological and naturalistic inquiry framework	Women aged over 70 with osteoarthritis	To understand the experience of living and caring for self with osteoarthritis and physical functioning difficulties
Barlow 2018¹¹	Focus groups and in-depth interviews using iterative thematic analysis	Focus group participants were patients who had had a knee replacement. Interview participants were those who were waiting for or considering a knee replacement	To explore what factors affect patient decision-making at different points in the patient pathway
Baumann 2007¹²	Focus groups using qualitative analysis	Osteoarthritis patients purchasing medication at a pharmacy	To evaluate the expectations of osteoarthritis patients and to consider how this information may be used to improve healthcare provision and the patients-doctor relationship
Bower 2006¹⁸	In-depth semi-structured face-to-face interviews with a grounded theory methodology	Seniors with a physician confirmed diagnosis of osteoarthritis	To explore with seniors what influences their choice of medication for osteoarthritis
Brembo 2016²⁰	In-depth semi-structured face-to-face interviews with an inductive thematic analysis approach	Patients with hip osteoarthritis	To investigate patients’ need for information and their personal and emotional needs
Campbell 2001²²	Interviews in a qualitative study, nested within a randomised controlled trial	People with osteoarthritis of the knee interviewed 3 months after they completed the physiotherapy program, with some people being interviewed again 1 year later	To understand reasons for compliance and non-compliance with a home based exercise regimen by people with osteoarthritis of the knee
Carmona-Teres 2017²³	Semi-structured face-to-face interviews with a content thematic analysis	Patients with knee osteoarthritis	To identify current practice and advice of primary care physicians from the patients’ perspective, and to understand the experiences, perceptions, evaluations, values, beliefs, and coping strategies of patients with OA
Chan 2011²⁷	Qualitative interviews with thematic analysis	Patients with a history of knee pain diagnoses as having knee osteoarthritis	To evaluate the influence of different pain patterns on quality of life and to investigate patients’ interpretation and coping strategies
Churchill 2020³²	Semi-structured interviews	People attending first consultation with an arthroplasty surgeon for consideration for total knee replacement	To pilot educational videos with patients to determine their experiences and perspectives regarding the content and clarity of videos and to better understand their potential impact on patients’ health behaviour	The data has come from a mixed methods study which included survey information
Clarke 2014³³	Qualitative interviews using thematic analysis	People with knee osteoarthritis	To examine the experiences of pain reported by participants with knee osteoarthritis
Demierre 2011³⁷	Semi-structured interviews with a thematic discourse analysis	24 adults aged <75 years awaiting arthroplasty	To explore the patient illness experience from the moment the decision is made to perform arthroplasty through 12 months post-surgery
Dosanjh 2009³⁸	Semi-structured interviews or focus groups using a grounded theory approach and content analysis	Patients who were scheduled for an upcoming total hip arthroplasty or had completed total hip arthroplasty	To explore patients experiences and their decision making processes to undergo total hip arthroplasty and examine the factors that influenced decisions about the type of surgical procedure
Egerton 2017⁴²	Semi-structured telephone interviews with an inductive thematic approach	11 GPs from metropolitan, regional, large and small practices	To identify potential factors influencing GPs engagement with a proposed new model of service deliver to provide evidence-based care for patients with knee OA and achieve better outcomes	In relation to a specific intervention
Erwin 2018⁴³	Face-to-face focus groups with a phenomenological approach using deductive thematic analysis	25 people with arthritis, including osteoarthritis and inflammatory arthritis	To identify competencies that patients think non-specialist community-based nurses and allied health professionals need to enable them to access, care for and manage arthritis appropriately
Goldsmith 2017⁴⁹	In-depth semi-structured face-to-face interviews using a thematic analysis approach	45 adults with primary or secondary osteoarthritis scheduled to undergo total knee arthroplasty surgery	To improve understanding of patient experience and patient satisfaction following total knee arthroplasty surgery	The data have come from a mixed methods prospective cohort study
Hall 2008⁵³	In-depth interviews using a modified grounded theory method approach	15 people with knee osteoarthritis who were waiting total knee arthroplasty	To investigate the physical and psychological consequences of living with osteoarthritis and peoples’ views of total knee arthroplasty and physiotherapy
Hendry 2006⁵⁶	Semi-structured interviews and a focus group	22 primary care patients with knee osteoarthritis	To examine the views of primary care patients with knee osteoarthritis towards exercise, explore factors that determine the acceptability and motivation to exercise, and to identify barriers that limit its use
Hinman 2016⁵⁷	Semi-structured interviews using thematic analysis informed by grounded theory	10 physical therapists, 4 telephone coaches, and 6 patients with painful knee osteoarthritis	To explore how stakeholders experienced and made sense of being involved in an integrated programme of physical therapist supervised exercise and telephone coaching for people with knee osteoarthritis	Relates to a specific intervention. Participants are part of an RCT.
Hudak 2002⁶⁰	In depth face-to-face interviews using qualitative content analysis	17 elderly individuals who were candidates for total joint arthroplasty	To explore the process by which elderly persons make decisions about a surgical treatment
Ilic 2005⁶²	Focus groups with qualitative thematic analysis	12 individuals diagnosed with chronic osteoarthritis	To evaluate the feasibility and user satisfaction of an Internet User’s Guide to educate and assist patients to search for medical information about osteoarthritis
Kao 2014⁶⁹	Semi-structured one-on-one interviews with content analysis	17 adults (aged 43–55 years) with Ahlback stage 1–2 knee osteoarthritis with the ability to speak Mandarin or Taiwanese	To understand the illness experiences of middle-aged adults with early knee osteoarthritis
Kamsan 2020⁶⁶	Qualitative design using focus group discussions	Older adults aged 60 years and above with a clinical diagnosis of knee osteoarthritis	To explore older adults’ knowledge about knee osteoarthritis and their perspectives on the information required to enable self-management
Karlson 1997⁷⁰	Focus groups using semi-quantitatively and qualitatively methods	30 people with moderately severely severe osteoarthritis of the hip or knee	To study gender specific preferences regarding timing of elective total joint replacement surgery
MacKay 2020⁸³	Qualitative study using semi-structured interviews	Physical therapists who worked with individuals with knee symptoms or diagnosed knee OA in the past 3 months, worked in community based or outpatient settings and could communicate in English	To explore how physical therapists approached management for early knee OA
Mann 2011⁸⁷	Focus groups and semi-structured interviews using the framework methodology to generate themes	16 people with hip/knee osteoarthritis took part in focus groups; 12 HCPs were interviewed	To explore the opinions of patients and health professionals about the provision of health care for people with osteoarthritis and possible service improvements
McGruer 2019⁸⁸	Semi-structured interviews using thematic analysis	Māori adults with clinical knee or hip osteoarthritis	To explore the Māori lived experience of osteoarthritis
McHugh 2009⁸⁹	In-depth semi-structured interviews nested within a longitudinal study, using a framework approach	Patients who were newly referred to an orthopaedic consult for further investigation concerning their hip or knee osteoarthritis	To elucidate some of the factors that influence the decision to have or not have total joint replacement
McKevitt 2021⁹⁰	Individual semi-structured interviews (face to face)	Adults aged ≥ 45, with self-reported OA and at least one comorbidity located in the Northwest and West Midlands of England (N=17)	To investigate how people with OA experience physical activity in the context of comorbidity, and how best to support people with OA and comorbidity to be more active	Study was part of a larger multi method study that included quantitative and qualitative evidence
Mikhail 2007⁹¹	Focus groups using a qualitative content analysis approach	Five advanced general practice registrars, six experienced GPs, and 20 patients with osteoarthritis aged 54–85 years	To examine the effect of the debate on the safety of NSAIDs drugs on decision making by Australian general practitioners and patients with osteoarthritis, and to explore issues concerning the use of NSAIDs from both prescriber and consumer perspective
Miller 2016⁹³	Three-step peer-to-peer process including a focus group, creation of an interview guide, and a reflective focus group	Patients with osteoarthritis and trained in engagement methods	To assess the experience of what is important to osteoarthritis patients as they seek help for their symptoms
Olsen 2017¹⁰¹	Individual semi-structured interviews using systematic text condensation	Patients with primary hip osteoarthritis	To explore how patients described their experiences and outcome from participating in patient education and basic body awareness therapy
Parsons 2009¹⁰⁵	Unstructured interviews using a phenomenological approach	Patients who had been referred for a primary hip and knee replacement	To explore the lived experiences of patients with severe osteoarthritis of the hip or knew whilst awaiting joint replacement surgery
Pitt 2008¹⁰⁷	Focus group interviews using thematic analysis	GPs who had experience of managing people with osteoarthritis and with an opinion about self-management programmes	To examine the barriers to, and drivers of, referrals of patients with osteoarthritis to self-management programmes
Rosemann 2006¹¹²	Semi-structured face-to-face interviews	20 patients, 20 GPs and 20 practice nurses	To identify health care needs of patients with osteoarthritis and to reveal possible obstacles for improvements in primary care management of osteoarthritis patients
Sanders 2004¹¹⁴	In-depth interviews using a thematic constant comparison technique	People with high levels of hip or knee pain	To explore barriers to healthcare utilisation in people with moderate to severe hip or knee symptoms or pain and disability
Smith 2014¹¹⁷	Systematic review and meta-ethnography	People with osteoarthritis	To determine the perceptions of people diagnosed with osteoarthritis towards their conservative management strategies	Review included a lot of themes other than just information. The relevant studies from this systematic review were included in our review.
Spitaels 2017¹¹⁸	Semi-structured interviews using directed content analysis	Patients with knee osteoarthritis	To investigate patients’ perceived barriers and facilitators in current osteoarthritis care	Specific to a Belgian guideline.
Stone 2017¹¹⁹	Semi-structured interviews examined using interpretational analysis	Adults with osteoarthritis who were at least 30 years of age, actively seeking medical treatment for their arthritis and not currently enrolled in a regular physiotherapy/physical activity program	To investigate the potential facilitators and barriers to physical activity for adults with osteoarthritis
Suarez-Almazor 2010¹²⁰	Focus groups using thematic analysis	Patients with knee osteoarthritis	To explore decision-making factors influencing preferences for TKA
Thomas 2013¹²⁶	Semi-structured face-to-face interviews using interpretative phenomenological analysis	Eleven participants (6 women and 5 men) ages 56–80 years who had radiographically confirmed symptomatic foot OA	To examine the experiences of primary care consultation among older adults with symptomatic foot osteoarthritis
Thorstenss on 2006¹²⁷	Semi-structured interviews using a phenomenographic approach	Patients with symptomatic, radiographic knee osteoarthritis who had participated in an exercise intervention	To describe the conceptions of exercise as a treatment for people with moderate to severe knee osteoarthritis
Victor 2004¹³¹	Structured interviews, diaries and patient education sessions using thematic and content analysis	Patients aged over 45 years with knee osteoarthritis	To enhance understanding of patients’ experiences of living with arthritis and goals for care

Table 3Review findings

Main findings	Statement of finding
Amount of information required	People want different amounts of information, but generally more information is required.
Information about the natural history of osteoarthritis	People needed more information about the origins of the disease as they could have misconceptions about why they have osteoarthritis.
Information and explanation of osteoarthritis diagnosis	It was important for people to get explicit information about what their diagnosis is and what it means for the future, to process their diagnosis better. They required, but did not know how to find, additional information on prognosis, self-management, and treatment options soon after diagnosis.
Sources of information – the HCP	There are a variety of health care professionals who can provide information to people with osteoarthritis, and it was thought important to have access to those with osteoarthritis expertise. People needed to know where they could get information regarding what health care providers could do and where they could get reliable information. The information from these professionals should be clear and understandable.
Sources of information other than the HCP: social networks	Many people preferred personal opinions of peers, friends, and families to inform them as often doctors were thought to not be a good source of information. Peer group support of people with similar issues made their present situation and future one less intimidating.
Sources of information other than the HCP: self-directed information and community services	People with osteoarthritis actively accessed other sources of information, including the internet but there were problems of reliability of the information, technicality, or specificity. There were other non-profit organisations which were useful for information, but there was not always awareness of services available and what they provided. There was a need for more community resources with ongoing support required.
Delivery of support. Subthemes: informing and support, communication skills	Informing and support: There was some contradictory evidence, but most of the evidence suggested a lack of information provision and support from practitioners. Some HCPs trivialised osteoarthritis, seeing it as a normal part of the ageing process and misunderstanding the impact it would have on the person. Patients often felt there was not enough time to listen, understand and explain anything to them. Leaving them feeling that they were not concerned or informed. They felt that the GP had a lack of knowledge on osteoarthritis and options to manage it. There were positive experiences when they were given recommendations for OA management, and felt listened to and hope for the future. Communication skills: they wanted clear explanations and did not want jargon which they could not understand. Body language and silence on a topic suggested the HCP did not know, and it would be better to admit this and get a second opinion. Computers created a barrier to communication. Some older people in one study wished a more authoritative model of interaction.
Self-management strategies. Subthemes: information required, self-help groups, pain management, treatment advice, exercise, and weight loss advice	Self-management was thought useful and efficacious. Information required: they required more trusty information which is specific to them so that they could manage their osteoarthritis. More advice on day-to-day management of OA. They wanted self-management skills to help manage their symptoms, to make decisions and have control of their OA. Self-help groups: they wanted more advice on the benefits of self-help groups and practitioners wanted to be able to signpost people to sources of help. Pain management: they had a lack of information about pain and how to deal with the changes in pain. They wanted to know how to manage it, heal it if possible, and make sure it does not get worse. They wanted more information on the explanations of pain and what their options were in relieving it. Treatment advice: they felt that medication was the default and alternative strategies were not recognised by their GPs. They wanted more details on the benefits between different drugs, which treatment matched the severity, and when to return to an HCP. Exercise and weight loss advice: there was some inconsistency in this with some feeling that their GP had tried to motivate them and explained the effects of lack of exercise and being overweight. They did not mention which type of exercise they should be doing, and directions were vague. They all agree the benefit of HCPs providing encouragement to exercise and giving specific exercise advice. However, some thought that they had received this, with specific exercises, referral to the gym and advice to walk, exercise in water or use an exercise bike to reduce the impact on joints. They wanted to get information and to be monitored for accountability to increase their motivation. Weight loss: patients wanted advice on weight management and exercise; some evidence indicated that they did get advice and recommendations on weight loss, but it did not focus on increasing motivation.
Management of osteoarthritis flare-ups	There was little evidence about this, but one participant wanted explanation of why and how the dose should be increased when there is a flare-up and why it decreased afterwards. Another study found most consultations focused on the person’s presenting problem (typically a symptom flare) with less emphasis on long-term management.
Referral	Referrals were often by sealed letter, and they felt left out of the process and wished more information.
Surgery. Subthemes: prior to surgery; preparation and recovery from surgery; physiotherapy	People researched surgery through books, the internet and from learning from people they know. Advice on information about the surgical procedure, health maintenance issues, exercise, use of walking aids, weight control and symptom control were low and inconsistent education/information, guidance, advice, or support. One study found a video helped address knowledge gaps regarding surgery but shifted responsibility of decision-making from surgeons to themselves. Preparation and recovery: they felt overwhelmed and anxious before surgery. This made retaining information they received difficult. Surgeons were key sources of information, and they wanted more information than they received. Information on pain expectations and pain management were required. A go to person would be useful to discuss pain and recovery. Knowing the recovery trajectory would also be useful.
Knowledge and expectations of physiotherapy	Some had little knowledge of physiotherapy, whereas others knew from previous treatments and preoperative education, but all felt it was beneficial for recovery.

Table 4Summary of the quality of evidence: amount of information required

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
Amount of information required
4	Combination of focus groups and individual interviews (2 studies) and focus groups only (2 studies)	People want different amounts of information, but generally more information is required.	Limitations	Minor concerns about methodologic al limitations^a	LOW
			Coherence	No concerns about coherence^b
			Relevance	Minor concerns about relevance^c
			Adequacy	No concerns about adequacy

(a): Three studies with minor limitations: the relationship between researcher and patients and HCPs could have influenced responses (Mann 2011). In two studies there was an unknown relationship between researchers (Barlow 2018 and Kamsan 2020) and a small sample size (Barlow 2018); another study (Baumann 2007) could have selection bias as the first people to arrive at the pharmacy were selected.

(b): In one study they wanted different amounts of information, in the other three studies the patients wanted more information, or the health professionals identified a lack of information for osteoarthritis patients. This was not thought enough to downgrade on.

(c): Amount of information was not one of the themes identified within the protocol but throughout the review lack of particular information was a key issue. One study was based on a French population so may not directly be applicable to the UK population (Baumann 2007), another study was in a Malaysian population (Kamsan 2020).

Table 5Summary of the quality of evidence: information about the natural history of osteoarthritis

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Information about the natural history of osteoarthritis
2	Focus groups (1 study) and individual interviews (1 study)	People needed more information about the origins of the disease as they could have misconceptions about why they have osteoarthritis.	Limitations	Minor limitations^a	LOW
			Coherence	Minor concerns about coherence^b
			Relevance	No concerns about relevancy^c
			Adequacy	No concerns about adequacy^d

(a): Two studies with minor limitations: In one study there may be selection bias as the first people to arrive at the pharmacy were selected (Baumann 2007). Rosemann 2011 did not give details of the relationship between researcher and participants.

(b): One study detailed that participants required more information on the origins to avoid misconceptions but the other study did not find any participants requesting this.

(c): Baumann 2007 was based on a French population so may not directly be applicable to the UK population, however the theme could be transferable so was not downgraded.

(d): There were only two studies, but one had 100 participants, so this was not downgraded.

Table 6Summary of the quality of evidence: information and explanation of osteoarthritis diagnosis

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Information and explanation of osteoarthritis diagnosis
5	A combination of individual interviews (1 study) and focus-groups (1 studies) and individual interviews (3 studies)	It was important for people to get explicit information about what their diagnosis is and what it means for the future, to process their diagnosis better. They required, but did not know how to find, additional information on prognosis, self-management, and treatment options soon after diagnosis.	Limitations	Minor limitations^a	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevancy^b
			Adequacy	No concerns about adequacy

(a): Four studies with minor limitations: the relationship between researcher and patients and HCPs could have influenced responses (Mann 2011). Baumann 2007 may have selection bias as the first people to arrive at the pharmacy were selected. Rosemann 2011 did not give details of the relationship between researcher and participants. Brembo 2016 had a very small sample. Those in the early stages of hip osteoarthritis were thought to be underrepresented in the sample and their experiences and questions less clearly explored. Kao 2014 had a small sample size and regional differences may be present.

(b): Baumann 2007 was based on a French population so may not directly be applicable to the UK population. Kao 2014 was conducted in Taiwan so this may not be transferable to the UK, but there was still enough data from other studies to not downgrade overall for relevance.

Table 7Summary of the quality of evidence: sources of information – the HCP

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Sources of information – the HCP
6	Individual interviews (4 studies) and focus-groups (2 studies)	There are a variety of health care professionals who can provide information to people with osteoarthritis, and it was thought important to have access to those with osteoarthritis expertise. People needed to know where they could get information regarding what health care providers could do and where they could get reliable information. The information from these professionals should be clear and understandable.	Limitations	Minor limitations^a	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	No concerns about adequacy

(a): The 5 studies had minor limitations: in most studies the relationship between the researcher and participants was not reported (Ali 2018, Bower 2006, Carmona-Teres 2017, Miller 2016, Mikhail 2007). Chan 2011 had moderate limitations due to unclear relationship of the researcher and no discussion of ethical issues and data collection methods not supported by quotes from the patients. Miller 2016 could have been biased towards more motivated patients.

Table 8Summary of the quality of evidence: sources of information other than the HCP: social networks

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Sources of information other than the HCP: social networks
8	A combination of individual interviews and focus groups (1 study) individual interviews (5 studies) and focus-groups (2 studies)	Many people preferred personal opinions of peers, friends, and families to inform them as often doctors were thought to not be a good source of information. Peer group support of people with similar issues made their present situation and future one less intimidating.	Limitations	Minor limitations^a	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns of relevance^b
			Adequacy	No concerns about adequacy

(a): The 8 studies had minor limitations: the relationship between the researcher and participants was not reported in several studies (Ali 2018, Al-Taiar 2013, Barlow 2018, Bower 2016, Chan 2011, Maly 2007). There was a very small sample size in a few studies (Barlow 2018 n=5, Maly 2007 n=3) Barlow 2018 had no details on setting or ethical issues. Barlow 2018 may not be generalisable to all patients with OA as the participants were selected for being more ‘extreme’ cases and the three participants were of the older age group. In Olsen 2017 people found it difficult to recall contents of the information derived specifically from patient education since much or the same information was conveyed in the BBAT groups. In Chan 2011 ethical issues were not being discussed and data collection methods not being supported by quotes from patients.

(b): The studies were from a range of different countries: Ali 2018, Bower 2006 and Maly 2007 were in a Canadian population, Baird 2003 was in the UK, Al-Taiar 2013 in Kuwait, Chan 2011 in Hong Kong, and Olsen 2017 was in Norway so these may not be directly applicable to a United Kingdom population, however the theme is likely to be transferable therefore the quality was not downgraded. Only Barlow 2018 was a UK population.

Table 9Summary of the quality of evidence: sources of information other than the HCP: self-directed information and community services

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Sources of information other than the HCP: self-directed information and community services
6	Individual interviews (4 studies) and focus-groups (2 studies)	People with osteoarthritis actively accessed other sources of information, including the internet but there were problems of reliability of the information, technicality, or specificity. There were other non-profit organisations which were useful for information, but there was not always awareness of services available and what they provided. There was a need for more community resources with ongoing support required.	Limitations	Minor limitations^a	MODERATE
			Coherence	No concerns about coherence
			Relevance	Partially applicable^b
			Adequacy	No concerns about adequacy

(a): The 6 studies had minor limitations. Most did not report the relationship between the researcher and participants (Ali 2018, Bower 2006, Mikhail 2007 and Rosemann 2011). Ilic 2005 provides very limited information throughout that makes it difficult to interpret. Baird 2003 had a very small sample size (n=5).

(b): The studies were from a range of different countries: Ali 2018 and Bower 2006 were in a Canadian population, Baird 2003 in a USA population, Ilic 2005 and Mikhail 2007 were in an Australian population. Rosemann 2011 in a German population so these may not be directly applicable to a United Kingdom population. However, the theme of self-directed information is likely to be transferable, whereas community services may not be, so this was not downgraded as the majority of the evidence was about self-directed information.

Table 10Summary of the quality of evidence: delivery of support

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Delivery of support. Subthemes: informing and support
9	A combination of individual interviews and focus groups (1 study); Individual interviews (5 studies) and focus-groups (3 study)	Informing and support: There was some contradictory evidence, but most of the evidence suggested a lack of information provision and support from practitioners. Some trivialised osteoarthritis, seeing it as a normal part of the ageing process and misunderstanding the impact it would have on the person. They often felt there was not enough time to listen, understand and explain anything to them. Leaving them feeling that they were not concerned or informed. They felt that the GP had a lack of knowledge on osteoarthritis and options to manage it. There were positive experiences when they were given recommendations for OA management, and felt listened to and hope for the future.	Limitations	Minor limitations^a	LOW
			Coherence	Minor concerns about coherence^d
			Relevance	Partially applicable^b
			Adequacy	No concerns about adequacy
Delivery of support. Sub-theme: communication skills
3	Individual interviews (2 studies) and focus groups (1 study)	They wanted clear explanations and did not want jargon which they could not understand. Body language and silence on a topic suggested they did not know, and it would be better to admit this and get a second opinion. Computers created a barrier to communication. Some older people wished a more authoritative model of interaction.	Limitations	Minor limitations^c	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance^b
			Adequacy	Minor concerns about adequacy

(a): Eight studies had minor limitations. Most studies did not report the relationship between the researcher and participants (Alami 2011, Ali 2018, Erwin 2018, Mikhail 2007, Thomas 2013). Erwin 2018 had moderate limitations due to lack of information on ethical issues, and limited information/ lack of rigorous approach to data analysis. Mann 2011 had moderate limitations due to the potential influence of the researcher on responses to interviews/ focus groups. Results may not be generalisable as both patients and primary care practitioners were from the same GP practice. Baumann 2007 may have selection bias as the first people to arrive at the pharmacy were selected. Clarke 2014 gave insufficient explanation about the methodology behind the analysis. Thomas 2013 had minor limitations as data analysis did not seem as rigorous as other studies. Brembo 2016 had a small sample (n=13), and it was thought the needs of the individual person were unlikely to be fully accounted for from this type of study. Those in the early stages of hip osteoarthritis were thought to be underrepresented in the sample and their experiences and questions less clearly explored.

(b): The studies were from a range of different countries: Ali 2018 was in a Canadian population, Alami 2011 and Baumann 2007 were in a French population, Mikhail 2007 was in an Australian population. Brembo 2016 was in a Norwegian population, so these may not be directly applicable to a United Kingdom population, but the theme. Clarke 2014, Erwin 2018, Mann 2011, and Thomas 2013 were UK studies, and therefore this was not downgraded for relevance.

(c): There may be selection bias in the studies (Alami 2011, Baumann 2007 and Hudak 2002).

Table 11Summary of the quality of evidence: self-management strategies

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Self-management strategies. Sub-theme: information required
3	Individual interviews (1 studies) and focus-groups (3 studies)	Self-management was thought useful and efficacious. They wanted self-management skills to help manage their symptoms, to make decisions and have control of their OA. They required more trusty information which is specific to them so that they could manage their osteoarthritis. More advice on day-to-day management of OA.	Limitations	Minor limitations^a	MODERATE
			Coherence	Minor concerns about coherence
			Relevance	No concerns about relevance^g
			Adequacy	No concerns about adequacy
Subthemes: self-help groups
2	Individual interviews (1 study) and focus groups (1 study)	They wanted more advice on the benefits of self-help groups and practitioners wanted to be able to signpost people to sources of help.	Limitations	Minor limitations^b	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance^g
			Adequacy	No concerns about adequacy
Subtheme: Pain management
4	Individual interviews (2 study) and focus groups (2 studies)	They had a lack of information about pain and how to deal with the changes in pain. They wanted more information on the explanations of pain and what their options were in relieving it and ensuring it does not get worse.	Limitations	Minor limitations^c	MODEARATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance^g
			Adequacy	No concerns about adequacy
Subtheme: Treatment advice
7	Individual interviews (4 studies) and focus groups (4 studies)	They felt that medication was the default and alternative strategies were not recognised by their GPs. They wanted to know about non-pharmacological pain management options as they worried about the effects of medication. They wanted more details on the benefits between different drugs, which treatment. matched the severity, and when to return to an HCP.	Limitations	Minor limitations^d	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance^g
			Adequacy	No concerns about adequacy
Subtheme: Exercise and weight loss advice
6	A combination of individual interviews and focus groups (2 studies) and individual interviews (5 studies)	Patients wanted advice on weight management and exercise. There was some inconsistency in the findings with some feeling that their GP had tried to motivate them and explained the effects of lack of exercise and being overweight. They did not mention which type of exercise they should be doing, and directions were vague. They all agree the benefit of HCPs providing encouragement to exercise and giving specific exercise advice. However, some thought that they had received this, with specific exercises, referral to the gym and advice to walk, exercise in water or use an exercise bike to reduce the impact on joints. They wanted to get information and to be monitored for accountability to increase their motivation. Weight loss: they did get advice and recommendations on weight loss, but it did not focus on increasing motivation.	Limitations	Minor limitations^e	LOW
			Coherence	Minor concerns about coherence^f
			Relevance	No concerns about relevance^g
			Adequacy	No concerns about adequacy

(a): Information required: the 4 studies had moderate limitations due to unclear relationship of the researcher (Chan 2011, Erwin 2018, Miller 2016 and Kamsan 2020) and a lack of information on discussion of ethical issues (Chan 2011, Erwin 2018) and data collection methods not being supported by quotes from patients (Chan 2011) or limited information/ lack of rigorous approach to data analysis (Erwin 2018). Miller 2016 may have had selection bias towards more motivated patients due to recruitment methods.

(b): Self-help groups: Both studies had a lack of details of the relationship between researcher and participants (Erwin 2018 and Rosemann 2011) and Erwin 2018 had moderate limitations due to a lack of information on ethical issues and limited information/ lack of rigorous approach to data analysis.

(c): Pain management: All studies did not report the relationship between researcher and participants (Erwin 2018, Kamsan 2020, Miller 2016, Roseman 2011, Thomas 2013). Erwin 2018 had moderate limitations due to a lack of information on ethical issues, and limited information/ lack of rigorous approach to data analysis. Miller 2016 may have had selection bias towards more motivated patients due to recruitment methods. Thomas 2013 had minor limitations due to unclear data analysis methods.

(d): Treatment advice: the relationship between the researcher and participants was not reported in a few studies (Ali 2018, Alami 2011, Alami 2011, Chan 2011, Kamsan 2020, Mikhail 2007, Miller 2016, Thomas 2013) Alami had unclear selection and data analysis process. Baumann 2007 may have had selection bias as the first people to arrive at the pharmacy were selected. Chan 2011 had moderate limitations due to ethical issues not being discussed and data collection methods not being supported by quotes from patients. Miller 2016 may have had selection bias towards more motivated pts. Thomas 2013 had minor limitations due to unclear data analysis methods.

(e): Exercise and weight loss advice: The relationship between the researcher and participants was not reported in a few studies (Carmona-Teres 2017, Kamsan 2020, Rosemann 2011). Hendry 2006 Three of the authors were clinicians and one was a sports psychologist, who were all in favour of exercise provision for this group, however they were aware of this potential for investigator bias and actively sought any negative comments about such schemes. Hinman 2016 Specific to this integrated programme. Stone 2017 had moderate limitations due to the methods used could not control for researcher bias. Generalisability may be limited due to the use of a convenience sample from a private medical office that only comprised of people with osteoarthritis with a relatively shorter mean during of osteoarthritis (due to the inclusion of an under-researched “younger adult” population with osteoarthritis). Thorstensson 2006 had moderate limitations due to small number of participants (n=16) and the potential for researcher bias to influence patient statements.

(f): The studies differed in whether they had received information from their HCP about exercising and how specific the details were.

(g): Many of the studies were in countries other than the UK but the themes are relevant to the UK.

Table 12Summary of the quality of evidence: management of osteoarthritis flares

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Management of osteoarthritis flares
2	Focus-groups (2 studies)	There was little evidence about this, but one participant wanted explanation of why and how the dose should be increased when there is a flare-up and why it decreased afterwards. Another study found most consultations focused on the person’s presenting problem (typically a symptom flare) with less emphasis on long-term management.	Limitations	Minor limitations^a	VERY LOW
			Coherence	Minor concerns about coherence^b
			Relevance	Minor concerns about relevance^c
			Adequacy	Minor concerns about adequacy^d

(a): Baumann 2007 may have selection bias as the first people to arrive at the pharmacy were selected. Pitt 2008: the study reported that the sample size was small but noted that increasing the size was unlikely to yield any additional information. However, convenience sampling of participants in this study may limit the generalisability of results.

(b): The two studies were not coherent.

(c): Baumann 2007 was based on a French population and Pitt 2008 an Australian population, so may not directly be applicable to the UK population.

(d): Only two studies and only one participant mentioned it in one study.

Table 13Summary of the quality of evidence: referral

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Referral
2	Focus-groups (2 studies)	Referrals were often by sealed letter, and they felt left out of the process and wished more information.	Limitations	Minor limitations^a	LOW
			Coherence	No concerns about coherence
			Relevance	Minor concerns about relevance^b
			Adequacy	No concerns about adequacy

(a): Baumann 2007 may have selection bias as the first people to arrive at the pharmacy were selected. Pitt 2008: the study reported that the sample size was small but noted that increasing the size was unlikely to yield any additional information. However, convenience sampling of participants in this study may limit the generalisability of results.

(b): Baumann 2007 was based on a French population and Pitt 2008 an Australian population, so may not directly be applicable to the UK population, particularly given the theme referral.

Table 14Summary of the quality of evidence: surgery

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Surgery. Subthemes: prior to surgery
9	A combination of individual interviews (1 study); individual interviews (5 studies) and focus-groups (2 studies); mixed method with semi-structured interviews (1 study)	People researched surgery through books, the internet and from learning from people they know. Advice on information about the surgical procedure, health maintenance issues, exercise, use of walking aids, weight control and symptom control were low and inconsistent education/information, guidance, advice, or support. One study found a video helped address knowledge gaps regarding surgery but shifted responsibility of decision-making from surgeons to themselves.	Limitations	Minor limitations^a	MODERATE
			Coherence	No concerns about coherence
			Relevance	No concerns about relevance
			Adequacy	No concerns about adequacy
Preparation and recovery from surgery
1	Individual interviews (1 study)	They felt overwhelmed and anxious before surgery. This made retaining information they received difficult. Surgeons were key sources of information, and they wanted more information than they received. Information on pain expectations and pain management were required. A go to person would be useful to discuss pain and recovery. Knowing the recovery trajectory would also be useful.	Limitations	Minor limitations^b	VERY LOW
			Coherence	No concerns about coherence
			Relevance	Partially applicable^c
			Adequacy	Minor concerns about adequacy^d

(a): The studies had minor limitations: the relationship between researcher and participants was not reported in a few studies (Al-Taiar 2013, Ali 2018, Churchill 2020, Hall 2008, Karlson 1997). Dosanjh 2009 had minor limitations due to potential influence of the researcher on the focus group and ethics approval not mentioned. Hudak 2002 The study notes that they could have been selecting a population that did not have sufficient information about the procedure or were basing it on a hypothetical that was not appropriate for them at this time. A second limitation was the extent to which assumptions are applicable to a wider population. The sample size was small, but note that all the themes could be seen. In the study design they exclude any participants who are unsure or would choose to have total joint arthroplasty, and so misses a fair amount of the population in their aim and makes the research less applicable. McHugh 2009; the study notes that it is limited in its generalisability with the type of study design and small sample size, with selection bias. Karlson 1997: results were given ‘semi-quantitively’ and were specifically related to total joint replacement. Minor limitations due to unclear recruitment method and a lack of ethics reporting. Parsons 2009 focused on a relatively small sample of people living with advanced osteoarthritis while awaiting total hip/knee replacement surgery, therefore it may lack generalisability.

(b): Goldsmith 2017 had minor limitations due to the role of the researcher not being adequately addressed.

(c): Theme not completely relevant to review as it is related to recovery from surgery.

(d): Only one study contributed to the theme.

Table 15Summary of the quality of evidence: knowledge and expectations of physiotherapy

Study design and sample size		Findings	Quality assessment
Number of studies contributing to the finding	Design	Findings	Criteria	Rating	Overall assessment of confidence
Knowledge and expectations of physiotherapy
3	Individual interviews (2 studies) and focus groups (1 study)	Some had little knowledge of physiotherapy, whereas others knew from previous treatments and preoperative education, but all felt it was beneficial for recovery. People with OA personalised plans and professionals’ opinions with an instructor was beneficial and physiotherapists felt targeted treatment to goals and interests and fitting into their daily life helped participant buy-in.	Limitations	Minor limitations^a	VERY LOW
			Coherence	Minor concerns about coherence^b
			Relevance	Minor concerns about relevance^c
			Adequacy	Minor concerns about adequacy

(a): Hall 2008, Kamsan 2020: Minor limitations due to the relationship of the researcher not being discussed. Hall 2008: used existing in-depth interview data from a prospective qualitative study. Demierre 2011 had minor limitations due to unclear recruitment methods and the relationship of the researcher not being discussed. The study relates specifically to patients undergoing surgery.

(b): Variations in knowledge.

(c): Knowledge of physiotherapy after surgery may not be relevant to review and was downgraded.

Table 17Studies excluded from the qualitative review

Reference	Reason for exclusion
Agrawal 2012¹	Incorrect population: not osteoarthritis
Al-Khlaifat 2020²	Not relevant: knowledge of management options to relieve symptoms in patients in the middle east
Anthierens 2017⁶	Not relevant: talks about information provision but in the context of academic detailers providing GPs with information
Arslan 2021⁷	Incorrect study design: systematic review of quality indicators
Baird 2000⁹	Not relevant: about the experience of living and dealing with OA
Barker 2014¹⁰	Incorrect population: not specifically osteoarthritis, and not all had been diagnosed
Bayliss 2008¹³	Incorrect population and not relevant: not necessarily specific to OA, only one relevant theme
Berkovic 2019¹⁴	Not relevant: about the experience of young people with OA in the workplace
Booker 2021¹⁵	Incorrect study design: survey and interviews, which were not reported separately
Booker 2021¹⁶	Incorrect study design: review of qualitative and quantitative studies
Bowden 2021¹⁷	Incorrect study design
Brembo 2020¹⁹	Not relevant: themes not relevant to the review
Bunzli 2021²¹	Incorrect study design
Carpenter 2015²⁴	Incorrect study design
Carr 2017²⁵	Not relevant: only to do with designing of a ‘user interface’
Chabaud 2018²⁶	Not relevant: semi-structured interviews were uninformative, does not report themes.
Che Hasan 2020²⁸	Not relevant: specific to one programme
Christiansen 2020³⁰	Not relevant: about facilitators and barriers to physical therapy
Christiansen 2020³¹	Not relevant: themes not relevant to the review
Chou 2018²⁹	Incorrect study design
Cuperus 2013³⁴	Not relevant: talks about information, but only in relation to the booklet
Darlow 2018³⁶	Not relevant: themes not relevant to review
Darlow 2020³⁵	Not relevant: themes not relevant to review
Dragoi 2013³⁹	Incorrect study design: survey
du Long 2016⁴⁰	Incorrect study design: survey
Egerton 2021⁴¹	Incorrect study design: survey and interviews, which were not reported separately
Fedutes 2004⁴⁴	Incorrect study design: survey
Frankel 2016⁴⁵	Not relevant: Surgeons’ decision-making for giving patient total joint arthroplasty
French 2015⁴⁶	Incorrect study design: Delphi survey
Fujita 2006⁴⁷	Not relevant: Experiences before and after hip arthroplasty
Gignac 2006⁴⁸	Not relevant: is about signs and symptoms of OA rather than information
Grime 2014⁵⁰	Incorrect study design: summary of qualitative research
Gustaffson 2007⁵¹	Not relevant: experiences in perioperative period in replacement surgery
Hall 2005⁵²	Incorrect study design: abstract only, does not seem to be a qualitative study
Hampson 1993⁵⁴	Not relevant: personal models of OA
Hehl 2014⁵⁵	Not relevant: reports strategies of communication accommodation rather than themes
Hofstede 2016⁵⁸	Incorrect study design: Rather than themes, the study has a list of survey items and ratings from participants regarding importance rather than themes.
Holden 2019⁵⁹	Not relevant: approaches to analgesic use
Hurley 2018⁶¹	Not relevant and incorrect study design-about exercise interventions rather than general OA treatment/diagnosis process. Mixed methods study design.
Jeon 2019⁶³	Not relevant: specific to the website rather than general experience
Jinks 2007⁶⁴	Incorrect population: unclear if participants have OA
Johansson 2014⁶⁵	Incorrect study design - no themes reported, quantitative data only from survey responses
Kanavaki 2017⁶⁷	Review which only briefly mentions information
Kanavaki 2016⁶⁸	Incorrect study design: systematic review protocol
Larsson 2019⁷¹	Not relevant: only relates to the specific patient education intervention
Lavender 2021⁷²	Not relevant: challenges of living with OA and explore how a peer mentorship intervention can support these challenges
Lawford 2021⁷³	Not relevant: themes not relevant to the review
Lawford 2020⁷⁵	Not relevant: themes not relevant to the review
Lawford 2019⁷⁴	Not relevant: only relates to specific intervention
Ledingham 2020⁷⁶	Not relevant: exercise adherence and participants beliefs
Lenhard 2020⁷⁷	Not relevant: only one theme relating to patient specific factors regarding intra-articular injections
Lin 2019⁷⁸	Not relevant: talks about info but only in relation to the specific intervention
Liu 2007⁸⁰	Incorrect study design: survey
Lopez-Olivo 2022⁸¹	Incorrect population: Includes people with OA, osteoarthritis and rheumatoid arthritis
MacFarlane 2020⁸²	Not relevant: physician-perceived benefits and drawbacks of offering intra-articular injections.
Maly 2009⁸⁴	Not relevant: about how participants interpret their symptoms to recognise knee OA
Manias 2007⁸⁶	Incorrect population and not relevant: includes people who may not have had osteoarthritis and talks about information but only with regards to medication.
Milder 2011⁹²	Not relevant: no relevant themes. Study is about how patients make decisions about analgesics.
Miller 2020⁹³	Not relevant: barriers and facilitators to OA care
Moe 2011⁹⁴	Focus on programme design. No further information regarding themes
Mora 2012⁹⁵	Incorrect study design: not qualitative
Morden 2014⁹⁶	Not relevant: most themes talk about information but only in terms of the specific intervention that had been developed as part of the study
Mrklas 2020⁹⁷	Not relevant: themes not relevant to the review
Nelligan 2020⁹⁸	Not relevant: themes not relevant to the review. Study about self-directed eHealth intervention
Nilsing Strid 2020⁹⁹	Not relevant: varying needs for communication about sexual health
Ozkan 2021¹⁰²	Incorrect study design: survey
Panter 2021¹⁰³	Incorrect study design: survey
Park 2020¹⁰⁵	Not relevant: barriers and facilitators to physical activity
Pellinen 2016¹⁰⁶	Incorrect study design: not qualitative
Porcheret 2013¹⁰⁸	Incorrect study design
Power 2008¹⁰⁹	Not relevant: not about information
Radwin 2005¹¹⁰	Incorrect study design and incorrect population: abstract only and does not specify OA, just arthritis.
Rao 1998¹¹¹	Incorrect population: people with osteoarthritis and rheumatoid arthritis. The majority of groups had RA and OA results generally not reported separately.
Ryan 2013¹¹³	Incorrect population: only 5 of the 13 patients have osteoarthritis, the other 8 have RA
Saroop 2001¹¹⁵	Incorrect study design: no qualitative data
Swardh 2021¹²¹	Not relevant: themes not relevant to the review
Tallon 2000 ¹²²	Not relevant: not about information
Tanimura 2011¹²³	Study not available
Teo 2020¹²⁵	Not relevant: experiences of physiotherapists
Teo 2021¹²⁴	Not relevant: experiences of people having physiotherapy
Tiffany 2018⁷⁹	Not relevant: specifically about patient reported outcome measures
Traumer 2018¹²⁸	Not relevant: motives of undergoing total knee replacement
Turner 2007¹³⁰	About knowledge of OA (and diagnosis) rather than information
Van de Velde 2018¹²⁹	Not relevant: only related to a specific intervention
Veale 2008¹³⁰	Incorrect study design and incorrect population - no qualitative themes and does not specify OA
Victor 2004¹³¹	Incorrect study design: mixed methods but mostly quantitative, no themes
Vina 2019¹³²	Incorrect study design and not relevant: survey of ethnic differences in the use of exercise
Wallis 2019¹³⁵	Incorrect study design: systematic review with no relevant themes
Wallis 2020¹³³	Not relevant: barriers and facilitators for referral to a specific programme in Denmark
Wallis 2021¹³⁴	Not relevant: themes not relevant to the review
Washington 2015¹³⁶	Incorrect study design and not relevant: survey about decision aids
Webber 2019¹³⁷	Not relevant: knowledge gap but in relation to physical activity and sedentary lifestyle
Willis 2013¹⁴⁰	Incorrect population: unclear if the population is OA specifically.
Yilmaz 2005¹³⁹	Incorrect study design: no themes reported
Zornow 1973¹⁴³	Incorrect study design: survey

Table 18Studies identified but not extracted due to saturation

Reference	Topic
Zaidi 2013¹⁴²	Information sources for deciding on surgery
O’Brien 2019¹⁰⁰	Patient factors for deciding on surgery
Smith 2019¹¹⁶	Information for deciding on surgery

Evidence review for post-diagnostic information on osteoarthritis for people with osteoarthritis, their family and carers

1. Patient information

1.1. Review question

1.1.1. Introduction

1.1.2. Summary of the protocol

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

1.1.6. Summary of the qualitative evidence

Narrative summary of review findings

Review finding 1: amount of information required (LOW confidence)

Review finding 2: Information about the natural history of osteoarthritis (LOW confidence)

Review finding 3: Information and explanation of osteoarthritis diagnosis (MODERATE confidence)

Review finding 4: Sources of information - the HCP (MODERATE confidence)

Review finding 5: Sources of information other than the HCP: social networks (MODERATE confidence)

Review finding 6: Sources of information other than the HCP: self-directed information and community services (MODERATE confidence)

Review finding 7: Delivery of support

Informing and support

Communication skills

Review finding 8: self-management strategies

Self-management

Self-help groups

Pain management

Treatment advice

Exercise and weight loss advice

Review finding 9: Management of osteoarthritic flare-ups (VERY LOW confidence)

Review finding 10: Referral (LOW confidence)

Review finding 11: sources of information on surgery

Prior to surgery (MODERATE confidence)

Review finding 12: Preparation and recovery from surgery (VERY LOW confidence)

Review finding 13: Knowledge and expectations of physiotherapy (VERY LOW confidence)

1.1.7. Economic evidence

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

1.1.8.1. The quality of the evidence

1.1.8.2. Findings identified in the evidence synthesis

1.1.8.3. Cost effectiveness and resource use

1.1.8.4. Other factors the committee took into account

1.1.9. Recommendations supported by this evidence review

1.1.10. References

Appendices

Appendix A. Review protocol

Appendix B. Literature search strategies

B.1. Clinical search literature search strategy

Appendix C. Qualitative evidence study selection

Appendix D. Qualitative evidence

Appendix E. Excluded studies

Appendix F. Research recommendations – full details

F.1. Research Recommendations 1 & 2

F.1.1. Why this is important

F.1.2. Rationale for research recommendations

F.1.3. Modified PICO table: What information on osteoarthritis, including the management of flares, do people with osteoarthritis, their family and carers need after diagnosis?

F.1.4. Modified PICO table: What information do people with osteoarthritis from different ethnic and socio-economic groups and those with learning disability, health literacy issues and severe mental illness (and their family and carers) need?

Table 1PICO characteristics of review question

Table 2Summary of studies included in the evidence review

Table 3Review findings

Table 4Summary of the quality of evidence: amount of information required

Table 5Summary of the quality of evidence: information about the natural history of osteoarthritis

Table 6Summary of the quality of evidence: information and explanation of osteoarthritis diagnosis

Table 7Summary of the quality of evidence: sources of information – the HCP

Table 8Summary of the quality of evidence: sources of information other than the HCP: social networks

Table 9Summary of the quality of evidence: sources of information other than the HCP: self-directed information and community services

Table 10Summary of the quality of evidence: delivery of support

Table 11Summary of the quality of evidence: self-management strategies

Table 12Summary of the quality of evidence: management of osteoarthritis flares

Table 13Summary of the quality of evidence: referral

Table 14Summary of the quality of evidence: surgery

Table 15Summary of the quality of evidence: knowledge and expectations of physiotherapy

Table 17Studies excluded from the qualitative review

Table 18Studies identified but not extracted due to saturation