Appropriateness of joint replacement: A multi-stakeholder decision-support tool

1. Appropriateness of joint replacement: A multi-stakeholder decision-support tool Research in Waiting Time Management March 23, 2011 Ottawa, Ontario

2. Why Appropriateness? Traditional focus on supply-side management of waiting times Increasing supply increases demand Demand-side management requires definition and management of appropriateness Perspective matters

3. Scoping Review: Findings Appropriateness is that which is expected to contribute to patients’ health in a positive manner Almost exclusively a ‘clinical perspective’ Apparent absence of patient/public perspective Desirability/acceptability/expectations – under researched ‘Cost’ and decision-makers’ (payers’) perspective to be considered Int J HTA 24(3):342-9, 2008

4. Agenda – WCWL Appropriateness research • To provide an update on a program of research oriented toward the development of a multi-stakeholder decision-support tool for appropriateness of total knee and hip replacement • Systematic literature review • Patient focus groups • Surgeon interviews • Development of concept map • Next steps

5. Appropriateness of TJRResults of Systematic Literature Review Team Members: Diane Lorenzetti, Deborah Marshall, Claudia Sanmartin, Barb Spady, Kellie Langlois, Jennifer Yelland, Ken Fyie, Carla Rodrigues, Mike Drummond

6. Literature Synthesis • Objective 1: Clinical Perspective • What are the concepts, constructs, criteria and/or tools used to define appropriateness for joint replacement surgery from the clinical perspective (i.e. net clinical benefit)? • Objective 2: Patient Perspective • What are the concepts, constructs, criteria and/or tools used to define appropriateness for joint replacement surgery from the patient and public perspectives? • Objective 3: Decision-maker perspective • What are the concepts, constructs, criteria and/or tools used to define appropriateness for joint replacement surgery from the decision-maker perspective (e.g. value)?

7. Methods • Searched the following DB: MEDLINE, EMBASE, Cochrane Library, CINAHL, EconLit, Social Sciences Abstracts, Sociological Abstracts and reference list. • Peer reviewed articles published between Jan 1, 1995 and Jan 1, 2010. • Abstracts/titles reviewed: >6000 (incld outcomes) • Primary hip and knee replacements (exclude revisions) • Full articles included: • Clinical perspective (24) • Decision-maker perspective (24) • Patient (0)

8. Clinical Perspective – Risk vs benefit Most often mentioned Mentioned, less often Mental health (psych disorders, depression) Motivation Patient expectations Non-compliance System level factors (i.e. lack of resources) • Age (not criteria per se but considered) • Pain: severity at rest, night, frequency • WOMAC, pain scales • Functional limitations: walking distance, stairs, mobility, use of aids, shoes and socks • WOMAC, Functional class (I-IV) • Joint condition: space, stability (TKR), range of motion • X-ray, physical exam • Comorbidities and Surgical risk • Charlson Index, ASA index

9. Patient Perspective • All articles represent the patient perspective • Appropriateness – no information on patient perspective • Concepts – (un)willingness (12), expectations (6), decision-making (5), satisfaction (2) • Findings: • Vary depending on purpose and type of study

10. Literature Review - Summary • Literature review provides some information regarding key criteria to determine appropriateness of care • Reinforces standard criteria and provides some evidence of need to expand them • Provides information regarding methods and measures commonly used • Key gaps remain: • Clinical perspective: other criteria?, risks vs benefit valuation? • Patient: no relevant information from literature regarding appropriateness • Decision-maker perspective: other considerations than economic • Point to the need to obtain more “direct information” from stakeholder groups.

11. Appropriateness of TJR: Patients’ Views Gillian Hawker, Lucy Frankel, Claudia Sanmartin, Deborah Marshall, Barb Spady

12. Objective To understand the patients’ perspective on ‘appropriateness’ for TJR including if, and how, appropriateness relates to willingness to undergo this procedure

13. Methods - Participant Recruitment • Qualitative focus group study • Recruited participants from community, investigators’ practices, existing cohorts • Ensured ~ equal representation of: • 40 – 64 and 65+ years • men and women • urban and rural residents

14. Participant Eligibility • English-speaking men and women • 40 + years • Moderately severe hip or knee OA (WOMAC summary score ≥ 30; radiographic OA) • No absolute contraindication to surgery (e.g. major mental illness, stroke with paralysis)

15. Focus Group Format • Focus groups conducted separately in people with / without prior TJR • Discussion of participants’ perceptions of: • their own appropriateness for TJR • the hypothetical ideal candidate • the patients’ role in decision making • relationship, if any, between appropriateness and willingness to consider TJR

16. Analysis Focus groups audio-taped, transcribed verbatim by a single transcriptionist Transcripts reviewed independently by 2 researchers to identify distinct themes Themes were compared & consensus reached

17. Participant Characteristics • 11 focus groups in 58 participants • 36 with a prior TJR • Mean age 72 yrs; 79% female • Mean WOMAC summary score 43.1 • 50% willing to consider TJR • 43% considered themselves appropriate for TJR

18. Appropriate for surgery? Appropriateness for TJR was equated with one’s perceived candidacyfor the procedure

19. PAIN (pain coping) was the main factor to be considered • Pain intensity, and ability to cope with the pain, was identified as the most important factor determining surgical candidacy • But felt to be inadequately evaluated by currently physicians

20. Pain is a highly individual experience that is difficult to quantify “…different people have different pain thresholds, and they fit themselves on this 1 to 10 scale in different places. One person may say it’s a 10, and the other person who’s got the same amount of pain says it’s a 6….you know it’s hurting, you know it’s affecting your life, and I don’t care what your pain scale is, you need to have something done.”

21. “some people can tolerate much more pain than others…I’ve grown accustomed …to living with the pain. But I know other people…maybe it’s something they are not accustomed to, and mentally it’s far more serious to them and maybe they are the ones that require an operation sooner…”

22. The concept of symptoms being ‘bad enough’ Participants evaluated their pain against some invisible marker – even though many described high levels of discomfort, the pain they experienced was often described as ‘not bad enough’

23. “I’m in pain all the time but most of the time I can sleep at night. So I don’t feel I’m ready. But I have a brother and sister-in-law - both have had their knees replaced and I know what they were going through so I don’t think I’m anywhere near where they were”

24. Appropriateness and willingness were distinct, yet related, concepts

25. Appropriateness vs Willingness An individual may consider themselves a good candidate for surgery (thus appropriate) yet be unwilling to consider surgery for other reasons, e.g. care giving responsibilities

26. Appropriateness vs Willingness • However, willingness played an important role in determining patients’ sense of appropriateness • Those who were unwilling had stricter rules about candidacy for TJR than those who were willing • for unwilling, TJR was a treatment for extremes of pain and disability

27. Impact of pain on quality of life • Younger participants (50s and 60s) and older participants (70s and up) discussed their quality of life in different terms • Younger: hobbies, mental health, relationships, enjoyment of life • Older: ability to perform basic activities, e.g. dressing, bathing, housework

28. Older Individual “If you can function properly, then you’re fine…but once you stop, you can’t do this (housework, dressing, bathing) anymore, …that’s when you need the help”

29. Younger Individual “But the most difficult health issue was the knee. And so this caused me anxiety. I mean great anxiety. I felt like my life was being taken away from me and I had to do something.”

30. The Importance of Outlook • All participants stressed the importance of outlook when considering suitability for surgery • This notion was expressed many ways • Being psychologically ready, motivated, having a good attitude • Seen as a necessary ingredient of a successful outcome

31. Unethical to deny surgery because of ‘bad attitude’, but… Participants felt there should be more counseling pre-surgery about what to expect after surgery so that patients could make an informed decision

32. Influence of Physicians’ Opinions • Participants’ perceptions of TJR appropriateness were strongly influenced by what their physicians told them • x-ray & clinical findings

33. “I said, why are you sending me to a surgeon? I just want some pain medication for the arthritis and he said look, you need it, take it, have it, and I said, okay..”

34. Need for patient advocacy While participants placed a lot of faith in their physicians, they felt that when their symptoms reached ‘bad enough’ this should trump all other considerations, including age and weight This is when they needed to get vocal and advocate on behalf of themselves

35. Other Important Factors Balance of risks and benefits, including impact on employment, independence, burden on / ability to care for others Availability of social support to manage post-op rehab identified by TJR recipients

36. What we didn’t hear • Didn’t hear much about physical function, except in context of impact of pain on quality of life • Obesity as a contraindication to surgery • But lack of ability to lose weight was seen as a possible proxy for ‘lack of motivation’ • Age as a contraindication to surgery • It’s all about how the person feels (concerns about inappropriate demand for surgery?)

37. Summary – Key Findings • Consistent with previous studies in physician experts, patients with hip/knee OA identified arthritis severity & motivation as key considerations when evaluating appropriateness for TJR • spoke less about capacity to benefit (risks versus benefits) • Patients’ pain experience (impact on quality of life, ability to cope) was seen as the most important determinant • Inadequately evaluated by clinicians

38. Implications Enhanced patient-physician communication to better elaborate the impact of OA pain, possibly through use of more comprehensive and standardized pain assessment tools and patient decision aids, has potential to improve access to and outcomes following TJR by those who may benefit

39. Appropriateness of Total Joint Replacement:The View of Surgeons Lucy Frankel, Claudia Sanmartin, Carolyn DeCoster, and Lois Freeman-Collins

40. Objective • To understand the surgeon’s perspective on appropriateness for joint replacement • To identify the full range of criteria (risks and benefits) used by surgeons when determining who is and who is not a good candidate for surgery • To understand how they weigh risks and benefits • To solicit their views on a decision-making tool for appropriateness. • To determine their views on the role of other stakeholders in determining appropriateness (i.e. patients and decision-makers)

41. Methods • Sample: • Orthopaedic surgeons who are currently conduting hip and/or knee joint replacements (14) • Three provinces: Alberta, Manitoba, Nova Scotia • Representation of surgeons: • Age (≤50, 51-64, 65+) • Men and women • Academic and community based hospitals • Urban and Rural • Interview: • 20-30 minute semi-structured telephone interviews conducted by investigators (CS, CD) • Interviews were taped and contents transcribed • Analysis: • Data analyzed using qualitative thematic analysis • Transcripts reviewed independently by 2 researchers to identify distinct themes – compare results for consensus • Transcripts coded using NVivo software

42. Methods – Interview Questions • Questions: • How would you define “appropriateness” in the context of joint replacement? • What are the key factors that you consider when determining whether or not a patient is an appropriate candidate for surgery? • Are there situations when joint replacement is NOT appropriate? Can you describe some of the more common scenarios. • Besides clinicians, are there other points of views that you do or should be considered in determining appropriateness of joint replacement for individual patients? • To our understanding, there currently does not exist a standard decision-making tool used by orthopaedic surgeons to determine whether or not specific patients are appropriate for joint replacement. Do you use a specific tool or set of criteria to determine whether or not patients are appropriate? Is this tool used by others?

43. Results - Summary • Part 1: Criteria used to determine appropriateness • Age – overarching theme used to interpret and assess other criteria which may differ for younger versus older patients • Pain and function (quality of life) • Surgery as a last resort • Patient expectation • Social situation • Mental or psychological health • Comorbidities • Part 2: Risks versus Benefits • Immediate risk (comorbidities) versus benefits • Long-term risk (health of joint) versus benefits • Risks versus potential to benefit • Part 3: Views on …… • Role of other key stakeholders • Usefulness of a decision-making tool

44. Age Younger patients • Only 1 surgeon felt that age was a contraindication to surgery “So, the ones I wouldn’t consider doing a joint replacement on, generally people under 50. That’s not a hard and fast rule, but generally I wouldn’t.” (ID4) • Age was considered alongside • Disease progression • Whether patient had exhausted conservative measures • Whether patient had realistic expectations (more later..) • Sociological considerations such as employment were only discussed by one surgeon

45. Age cont. Older patients • Significant older age (80+) was not considered a contraindication on its own. • It also needed to be considered alongside other factors, most significantly the patient’s physical and mental health status. • Surgeons were concerned about patients’ comordidities that would increase their risk of life threatening complications or would impair their ability to carry out post-operative protocols • Patient’s physiological age was seen as being more pertinent

46. Age cont. • “We have not been told at this point, do not do anybody over 90 or you’re not doing anybody under 40. I would find it hard to think that that would be an appropriate way to deal with it because I’ve had people who are 93 and are physiologically better off than some of the 60 year olds.” (ID13)

47. Pain • Pain is identified as “the number one indication for any type of total joint surgery” • Pain relief is seen as the most predictable outcome of sugery • However surgeons agree that pain is hard to quantify • “What you feel for pain and what your neighbour feels for pain and what your mother-in-law feels for pain and what they can tolerate are wholly different…… Now, you can’t really put a number on it.” (ID2)

48. Quality of life • As discussed, patients’ quality of life is seen as an important indicator of pain level • However this term was defined differently by different surgeons • Majority discussed it terms of patient’s ability to perform their most basic day to day activities and whether pain interfered with their sleep “An appropriate patient is one with severe arthritis….who has significant pain that persistently impairs the activities of daily living.”(ID12)

49. Quality of life cont. • Some discussed it in much broader terms to include hobbies and employment, identifying a different kind of patient “I mean there are patients who have reached their retirement years and want to be active in walking and do some things, travel perhaps. They can get out and get the groceries and they can do their basic personal care but they can’t do these other things because of their disabling symptomology … I think some people will apply rigid guidelines and say well if you’re not having interference with your sleep and you can get out and do your groceries and do your housework then you don’t need this operation. I think that’s kind of unreasonable quite frankly”(ID10)

50. Surgery as a last resort • Majority of the surgeons felt that a total joint replacement should be considered as a last resort in terms of treatment options. • 11 out of 14 surgeons discussed this in terms of a factor to be considered • 10 of those felt that a patient who had not exhausted conservative treatment options was contraindicated to surgery. • As was previously mentioned, this was a particularly important criteria for younger patients