The Hip and Knee Book: developing an active management booklet for hip and knee osteoarthritis

Nefyn H Williams; Elvis Amoakwa; Kim Burton; Maggie Hendry; Ruth Lewis; Jeremy Jones; Paul Bennett; Richard D Neal; Glynne Andrew; Clare Wilkinson

doi:10.3399/bjgp10X483166

Abstract

Background The pain and disability of hip and knee osteoarthritis can be improved by exercise, but the best method of encouraging this is not known.

Aim To develop an evidence-based booklet for patients with hip or knee osteoarthritis, offering information and advice on maintaining activity.

Design of study Systematic review of reviews and guidelines, then focus groups.

Setting Four general practices in North East Wales.

Method Evidence-based messages were developed from a systematic review, synthesised into patient-centred messages, and then incorporated into a narrative. A draft booklet was examined by three focus groups to improve the phrasing of its messages and discuss its usefulness. The final draft was examined in a fourth focus group.

Results Six evidence-based guidelines and 54 systematic reviews were identified. The focus groups found the draft booklet to be informative and easy to read. They reported a lack of clarity about the cause of osteoarthritis and were surprised that the pain could improve. The value of exercise and weight loss beliefs was accepted and reinforced, but there was a perceived contradiction about heavy physical work being causative, while moderate exercise was beneficial. There was a fear of dependency on analgesia and misinterpretation of the message on hyaluranon injections. The information on joint replacement empowered patients to discuss referral with their GP. The text was revised to accommodate these issues.

Conclusion The booklet was readable, credible, and useful to end-users. A randomised controlled trial is planned, to test whether the booklet influences beliefs about osteoarthritis and exercise.

INTRODUCTION

Systematic reviews have highlighted the effectiveness of exercise in reducing pain and disability in hip and knee osteoarthritis,1^–3 and recent guidelines have emphasised the central role of exercise in the management of osteoarthritis.4^,5 Both aerobic walking and muscle-strengthening exercise have been shown to be effective; however the optimal type, dose, and setting for such physical activity is uncertain.3^,6 Despite these benefits, long-term adherence to exercise regimes is disappointing, and if exercise is not maintained its beneficial effects decline over time and finally disappear.7 The level of physical activity in older adults in the UK is low,8^–11 and reduced further by pain-related fear of movement in those with osteoarthritis.12^,13 Indeed, there is a culturally conditioned response to pain that encourages rest, which is inappropriate for most with this problem. How can patients with osteoarthritis be encouraged to increase their physical activity? In the similar field of low back pain, an evidence-based booklet has successfully changed patients' beliefs and behaviours. The effectiveness of The Back Book has been demonstrated in three randomised controlled trials (RCTs), one of which involved older people.14^–17

The aim of this study was to develop an evidence-based booklet for patients with hip or knee osteoarthritis, encouraging physical activity and promoting autonomy. The theoretical framework underpinning this new booklet was Leventhal's theory of self-regulation, which states that our coping response to illness is governed by our beliefs about the nature of the illness: how well we understand the symptoms (its identity), its chronicity, its controllability, its cause, and the seriousness of its consequences.18 Educational interventions should emphasise that control is possible and within the individual's abilities. This model has been extended to include treatment beliefs, so that when considering an intervention, the perceived benefit in health gain is weighed up with the perceived cost in terms of pain, fear, and expectation of exacerbating the condition.19 In addition, social learning theory states that an individual's ability to perform an activity (self-efficacy) is crucial to behaviour change.20 Taking account of this theoretical framework, a series of evidence-based messages were written for the booklet using the method described next.

METHOD

Evidence-based narrative informed by a systematic review

A systematic review of reviews and evidence-based guidelines was performed to ensure that these messages were consistent with the evidence. The review was conducted in line with the guidelines reported by the Centre for Reviews and Dissemination (CRD).21 In order to inform the evidence review and to make it manageable, a preliminary list of statements was written. This list was based on background reading of the literature, input from clinical experts in the fields of rheumatology and orthopaedic surgery, and from previous experience of writing The Back Book.14 Systematic reviews and evidence-based guidelines that addressed these statements were identified. Any new message identified was incorporated into the reviewing process. The aim was to develop a final list of evidence-based messages, with each message underpinned by evidence identified by the review. The process of mapping reviews and guidelines to a preliminary list of statements allowed identification of any important messages that were not underpinned by published systematic reviews and guidelines. These evidence-based messages were then converted into patient-centred messages for inclusion in the final booklet narrative.

How this fits in

Hip and knee osteoarthritis are common causes of pain and disability, which can be improved by self-help approaches. However, regular exercise is uncommon in this group and the best method of encouraging increased activity is not known. An evidence-based booklet has been developed to encourage physical activity. The booklet was readable and found to be credible and useful to end-users.

Search strategy

The following databases were searched from inception to June 2007 using strategies designed for each database: MEDLINE, EMBASE, CINAHL, AMED, PsychINFO, SPORTdiscus, SIGLE, and the Cochrane library. The search strategy included a combination of the following text words and indexed terms: osteoarthritis, hip; osteoarthritis, knee; degenerative joint disease; epidemiology; diagnosis; patient education; exercise. Arthroplasty, total hip replacement, and total knee replacement were excluded (Appendix 1).

Inclusion criteria

The titles and abstracts were screened by two independent reviewers. Inclusion criteria were: systematic reviews and evidence-based guidelines of adults with osteoarthritis of the hip or knee. Studies of generalised osteoarthritis were allowed if they included the hip and knee. Exclusion criteria were: osteoarthritis in other sites, surgical interventions, childhood arthritis, rare or specific cases, animal studies, osteoarthritis prevention, methodological studies, physiology/biochemistry of normal cartilage, or commentary papers. Relevant studies were then categorised according to study type and the intervention or processes studied.

Quality assessment and data extraction

Full papers of systematic reviews and evidence-based guidelines were obtained and reassessed for relevance by two independent reviewers. Systematic reviews were included if they fulfilled the Database of Abstracts of Reviews (DARE) criteria.22 Evidence-based guidelines were included, but those not specific to osteoarthritis, narrative reviews, and quick guides for clinicians were excluded. Relevant studies were data extracted and quality assessed by one reviewer and checked by a second. The systematic review quality checklist was adapted from the DARE inclusion criteria,22 and the Critical Appraisal Skills Programme (CASP) tool.23 The Appraisal of Guidelines for Research and Evaluation (AGREE) instrument was used as the checklist for guidelines.24

Matching the evidence to statements

Findings from the systematic reviews and guidelines were matched with the list of preliminary statements. The preliminary statements were modified, deleted, or added to accordingly, to form the final list of evidence-based messages (Table 1 and Appendix 2). The strength of the evidence for each statement was then rated with a star system, by two reviewers, and checked and amended by the other authors, based on the quantity, quality, and consistency of findings from multiple studies.25

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Table 1

Examples of evidence-based statements and patient-centred messages.

Patient-centred messages

The evidence-based messages were converted into patient-centred messages (Table 1 and Appendix 2), which were then incorporated into the narrative of a draft booklet. The booklet contained key messages about the nature of osteoarthritis and the beneficial effects of exercise. It adhered to guidelines for producing patient literature,26^,27 similar to those used previously to develop effective patient educational material.14

Focus groups

The patient-centred messages contained in the narrative of the draft booklet were examined in four focus groups, after obtaining participants' informed written consent. Each focus group comprised patients with osteoarthritis of the hip or knee, recruited from a different general medical practice in Wrexham or Flintshire. Participants were identified by searching for osteoarthritis diagnostic Read codes on the practices' computerised patient record database (Appendix 3). Sampling was purposive and stratified according to age, affected joint site, and time since diagnosis (Appendix 4). The aim of these focus groups was not to change the underlying evidence-based messages, but to improve the phrasing of the patient-centred messages, and the emphasis of these messages within the booklet. The first focus group was conducted in the authors' department in Wrexham; the other three were conducted in the participants' surgery premises. All participants consented to take part and agreed that their comments be recorded, anonymised, and used for the purpose of the study. The groups were run by a moderator and co-moderator, using a topic guide (Appendix 5), and notes were taken of relevant points. The discussion was also recorded and the notes were checked against the recording for completeness. The notes were coded into themes, which were used to refine the messages in the booklet.

RESULTS

Overview of systematic reviews and guidelines

The search strategy identified 5899 references, of which 1884 concerned osteoarthritis of the hip or knee. There were 294 reviews, of which 54 met the DARE criteria for systematic reviews. These reviews concerned: pharmacological treatment (n = 9);28^–36 risk factors and diagnosis (n = 11);37^–47 exercise (n = 8);48^–55 injections (n = 7);56^–62 physiotherapy (n = 6);63^–68 dietary supplements (n = 6);69^–74 complementary therapies (n = 4);75^–78 footwear and appliances (n = 2);79^,80 and weight reduction (n = 1).81 In addition, 45 guidelines were identified including surgical and non-surgical treatment, of which six met the study inclusion criteria (Figure 1).4^,5^,82^–85

Figure 1

Flow diagram of included systematic reviews and guidelines.

Quality of identified systematic reviews and guidelines

All but one58 of the systematic reviews met more than half of the quality criteria in the checklist (Appendix 6). All but one85 of the guidelines were clear and well presented and described rigorous methods of development. The National Institute for Health and Clinical Excellence (NICE) guideline addressed all of the quality domains, apart from a statement of editorial independence (Appendix 7).

Evidence-based statements and patient-centred messages

The results of the review were developed into a list of evidence-based messages, which were then converted into patient-centred messages (Table 1 and Appendix 2) prior to incorporation into the booklet narrative.

Focus groups

The four focus groups consisted of 18 participants, lasted between 90 and 120 minutes, and were held between 20 October and 17 December 2008. There were eight men and 10 women, with a mean age of 67.5 years (Appendix 4). All of the participants found the booklet useful. It contained information about other options apart from surgery. One focus group stated that it confirmed what they already knew, but would be particularly helpful for those who are newly diagnosed. Several criticisms emerged from the first three focus groups, which guided further refinements in a final draft of the booklet.

Criticisms

The booklet was easy to read but repetitive, and the meaning of some terms was poorly understood. There was a lack of clarity about the cause of osteoarthritis. Many were surprised that the pain of osteoarthritis could improve in some people. The concept that joints have the potential for some repair was helpful but not clearly expressed. The message that heavy physical work increased the risk of osteoarthritis, but that physical activity was beneficial once it had developed, was contradictory. The hyaluranon injection message was misinterpreted as supporting its use.

Amendments

The booklet was shortened slightly and made less repetitive. The misunderstood terms were removed. The pathological description of osteoarthritis was clarified and illustrated with line drawings. The section on risk factors was clarified, the ageing process was acknowledged, and a statement was added that although various risk factors were known the cause of most osteoarthritis was not. Aggravating and relieving factors were made more explicit. The physical activity message was rephrased to state that intense physical demands helped to cause osteoarthritis, but that regular moderate exercise was beneficial, also that activity such as housework and gardening can be energetic but may not provide sufficient daily exercise. The section concerning hyaluranon was shortened and simplified, and the lack of evidence of long-term effectiveness was emphasised. One focus group thought that the booklet should include the contact details of support groups that patients with osteoarthritis can consult for help and advice. Selected (UK) sources were added. This final draft in the form of the publisher's proofs was given to the final focus group, which did not make any further suggestions to improve the text. Other emergent themes are described next.

‘Wear and tear’

Although most participants persisted in the belief that osteoarthritis was caused by ‘wear and tear’, they agreed that this term discouraged exercise. Doctors often used the term wear and tear, which affected patients' attitude towards exercise: ‘I think the idea of wear and tear is at the back of the mind and could discourage me from exercising or taking part in some sports such as badminton and some of these extreme sports in case it damages you more.’(patient 2)

One of the participants doubted the wear and tear theory and felt that inherited factors were more important.

Exercise beliefs reinforced

The booklet confirmed most participants' existing beliefs that exercise was important for health and that lack of mobility was detrimental. They reported that the message that moderate exercise was not harmful would encourage them to do more and to persevere. Even those with other limiting medical conditions were encouraged to do more. One participant agreed that exercise was good but was limited when the pain was too severe. There were some dissenting views; one argued that a new knee was treatment but that exercise was not, another that housework was sufficient and that the booklet emphasised more vigorous exercise, which would discourage some people. ‘I have already started walking and the booklet has confirmed that exercise won't cause me harm.’(patient 7)

Other themes

Other themes included the importance of weight loss, fear of dependency on pain killers, and feeling empowered to discuss referral for joint replacement surgery.

Reading age of the final booklet

The final booklet had means of 2.2 sentences per paragraph and 13.0 words per sentence, and had only 4% passive sentences.86 The scores for the Flesch Reading Ease test87 (71.3) and the Flesch–Kincaid Grade Level88 (6.5) indicated that the booklet should be easily understandable to a 12–13 year old.

DISCUSSION

Summary of main findings

The review identified 54 systematic reviews and six sets of management guidelines that were relevant to developing the new booklet. The evidence-based statements were converted into patient-centred messages and incorporated into a narrative for the draft booklet. A number of small changes were made to the narrative following three focus groups: repetition was reduced; the causes of osteoarthritis and contradictory messages about physical activity causing and being beneficial for osteoarthritis were clarified; and a misinterpreted message about hyaluranon injections was rewritten. A final draft of the booklet was found to be acceptable to the fourth and final focus group. All of the focus groups found the booklet was acceptable, relevant, and interesting. They were surprised that symptoms/function in osteoarthritis could improve and that joints had the potential for some repair. Exercise beliefs were reinforced by the booklet, and patients were empowered by the message about joint replacement.

Strengths and limitations of the study

The content of the booklet did not just rely on expert opinion, but on a literature review and focus groups. The review method was designed to obtain sufficient evidence for the booklet, and could have included a search of primary observational and experimental studies if there were gaps in the secondary evidence base. However, it was decided that sufficient evidence was available from systematic reviews and management guidelines for the purpose of writing an evidence-based booklet. Focus groups allowed clarification of a number of statements that were unclear to participants. The focus groups were all enthusiastic about the booklet and thought it would be particularly helpful for newly diagnosed patients. However, two of the focus groups had fewer than five participants, and patients with osteoarthritis of the hip were under-represented. The focus group sample was not stratified according to educational attainment, as it was not possible to obtain this information from the practices' computerised record databases. Osteoarthritis patients were not used to help write the initial patient-centred messages, which was a weakness in the method, but the lead author has personal experience of osteoarthritis of the hip.

Comparison with existing literature

The method used to develop the narrative of this booklet was similar to that used for The Back Book,14 and The Whiplash Book.89 However, it was decided to construct a list of preliminary statements to act as a framework for the review, and also to extract data from systematic reviews and guidelines because of the large body of research available in this field. The evidence-based statements are broadly similar to the recommendations of the NICE osteoarthritis guidelines,5 although some recommendations regarding glucosamine and acupuncture differed somewhat.

Implications for future research and clinical practice

Alongside exercise and weight loss, the provision of information and advice is one of the core interventions for osteoarthritis in the NICE management guidelines.5 The focus groups found this booklet to be a useful source of advice, particularly for those who are newly diagnosed. Further work could also test the acceptability of the booklet in a geographically wider population in the UK and in other countries. The next step is to test whether this booklet can change illness and treatment beliefs in patients with osteoarthritis, and whether it influences exercise behaviour and health status. A pragmatic randomised controlled trial is planned, comparing the new booklet with another commonly used booklet that has less emphasis on physical activity and exercise.45

Acknowledgments

We would like to thank all of the patients who participated in the focus groups, and colleagues from the Department of Primary Care and Public Health, Cardiff University for their comments and suggestions.

Appendix 1. MEDLINE search strategy (adapted for other databases).

osteoarthritis, hip/
osteoarthritis, knee/
((hip or knee) adj3 (arthritis or osteoarthtitis or arthrosis or degenerative joint disease)).ti,ab
OR/1–3
(etiology or aetiology or caus$).ti,ab
epidemiology/
epidemiologic studies/
epidemiologic factors/
epidemiolog$.ti,ab
morbidity/
incidence/
prevalence/
risk factors/
(morbidity or incidence or prevalence or risk or progres$ or prognosis).ti,ab
OR/6–14
diagnosis/
(diagnos$ or symptom$ or sign$ or test$ or investigat$).ti,ab
16 or17
self efficacy/
self care/
(belief$ or fear avoidance or self efficacy or self management or self regulation or stage$ of change or catastrophis$ or catastrophiz$).ti,ab
OR/19–21
patient education/
(education or instruction or advi$ or guidance or recommend$).ti,ab
23 or 24
Exercise/
Walking/
(exercise$ or activ$ or swim$ or cycl$ or walk$).ti,ab
26 or 27
5 or 15 or 18 or 22 or 25 or 29
4 and 30

Appendix 2. Evidence-based statements and patient-centred messages.

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Appendix 3. Read codes for eligible patients (>50 years old).

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Appendix 4. Composition of the focus groups.

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Appendix 5. Topic guide for focus group.

Is the booklet written in a clear and simple language?
- Is it clearly laid out?
- Is it easy to follow?
- Are there any unfamiliar words?
Do you really understand the content of the booklet?
- What do you think about the message that exercise and physical activity is good for osteoarthritis? Is it clear? Do you believe it? Would the booklet change how or what you think about exercise? Would it change how much exercise you do?
- In the booklet we have criticised the idea of ‘wear and tear’ causing osteoarthritis? Do you believe that this is right? Is this criticism helpful or unhelpful to you?
- Do you think the ‘wear and tear’ idea discourages people from exercise?
- What do you think about the message that the joint has some ability to repair itself? Is this an important message? Is it expressed clearly?
- Do you feel that the cause of osteoarthritis is adequately explained? Do you believe it?
- What do you think about how osteoarthritis is diagnosed?
- What do you think about the other messages?
  weight loss
  safe pain relief with regular paracetamol
  topical anti-inflammatory rubs
  physiotherapy
  were the exercises easy to follow?
  hot + cold
  prescribed medication
  joint injections
  arthroscopy
  joint replacement
- Explore NSAIDs reaction in more detail
Do you find the messages interesting?
- How interesting did you find the booklet to read?
- Were any parts not interesting? (which?)
- Do you think the booklet could be made more interesting? (how?)
Is there anything new to you?
Moderator to summarise the main points of the booklet, then ask:
- How much of this information is new to you?
- Which points were new?
- Is there any information in the booklet that surprised you? (what? in what way?)
- Did you have any questions in your mind about hip or knee pain that our booklet didn't answer?
Do you believe in the facts presented?
- Thinking especially about any points that were new to you or that you found surprising, was there anything you disagree with?
- Will reading the booklet change the way you think about osteoarthritis? (in what way?)
- Will reading the booklet change the way you behave? (in what way?)
- Would you recommend the booklet to a friend? (why/why not?)
The layout of this hip and knee book will be similar to The Back Book. What do you think?
Are there any points that are MISSING? Example, how did receiving a diagnosis of osteoarthritis change how you thought about yourself, how active you should be, and how much you should exercise?

Appendix 6. Quality assessment of systematic reviews.

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Appendix 6. Quality assessment of systematic reviews

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Appendix 7. Quality assessment of management guidelines.

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Notes

Funding body

This work was supported by a project grant from the Wales Office of Research and Development for Health and Social Care (Ref 06/2/234).

Ethical approval

Ethical approval was obtained from the North Wales East Research Ethics Committee (REC reference 09/WNo03/5).

Competing interests

Cardiff University and Kim Burton will receive royalties from sale of the booklet. The other authors have stated that there are none.

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Contribute and read comments about this article on the Discussion Forum: http://www.rcgp.org.uk/bjgp-discuss

Received April 19, 2009.
Revision received June 23, 2009.
Accepted July 14, 2009.

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The Hip and Knee Book: developing an active management booklet for hip and knee osteoarthritis

Abstract

INTRODUCTION

METHOD

Evidence-based narrative informed by a systematic review

How this fits in

Search strategy

Inclusion criteria

Quality assessment and data extraction

Matching the evidence to statements

Patient-centred messages

Focus groups

RESULTS

Overview of systematic reviews and guidelines

Quality of identified systematic reviews and guidelines

Evidence-based statements and patient-centred messages

Focus groups

Criticisms

Amendments

‘Wear and tear’

Exercise beliefs reinforced

Other themes

Reading age of the final booklet

DISCUSSION

Summary of main findings

Strengths and limitations of the study

Comparison with existing literature

Implications for future research and clinical practice

Acknowledgments

Appendix 1. MEDLINE search strategy (adapted for other databases).

Appendix 2. Evidence-based statements and patient-centred messages.

Appendix 3. Read codes for eligible patients (>50 years old).

Appendix 4. Composition of the focus groups.

Appendix 5. Topic guide for focus group.

Appendix 6. Quality assessment of systematic reviews.

Appendix 6. Quality assessment of systematic reviews

Appendix 7. Quality assessment of management guidelines.

Notes

Funding body

Ethical approval

Competing interests

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