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Patient experience and advocacy

TL;DR — Qualitative syntheses describe confusion about variable symptoms and fear that activity will cause harm; clear reassurance, tailored exercise and support may improve participation (Hurley 2018, PMID 29664187). Knee stiffness can impair participation and quality of life, while lower-limb OA creates physical and emotional difficulties at work (Reischl 2024, PMID 39073278; Alyousef 2024, PMID 37995059).

Decision frame

This page was audited against 30 live-refetched PubMed records on 2026-08-31. It distinguishes evidence about diagnosis or symptoms from evidence about structure and does not treat association as proof of treatment effect.

Audit interpretation safeguards

  • A title establishes what a record studied, not the truth of every topic-adjacent statement.
  • Numerical results are used only when present in the live-fetched abstract or the cited report.
  • Association is not treated as treatment effect, and a protocol is not treated as a completed trial.
  • Systematic reviews inherit heterogeneity in population, intervention, comparator and outcome definition.

What patients report that trials often do not measure

Hurley’s mixed-methods Cochrane review: people with hip/knee OA commonly misunderstand variable symptoms and fear that activity will damage the joint; reassurance, tailored exercise and support can improve participation (Hurley 2018, PMID 29664187). First symptoms are often not labelled “arthritis” by the person experiencing them (King 2024, PMID 38229918). Stiffness impairs participation and quality of life beyond pain scores (Reischl 2024, PMID 39073278). Lower-limb OA creates physical and emotional difficulties at work, including disclosure and job-demand negotiation (Alyousef 2024, PMID 37995059). Qualitative hand-OA studies identify dexterity, appearance, leisure and social-participation burdens (Panter 2021, PMID 33537932).

Implementation gaps are multi-level. Australian GPs describe system, knowledge and encounter barriers to delivering recommended hip/knee OA care (Gibbs 2024, PMID 39702012). In the uncontrolled GLA:D registry, 9,825 participants reported mean pain reductions of 12.4 points at 3 months and 13.7 at 12 months (0–100), while only 20% of Danish municipalities offered the program at the time of the report; the before–after changes do not isolate a causal program effect (Skou 2017, PMID 28173795). Aboriginal and Torres Strait Islander and Māori qualitative work documents culturally specific impact and service mismatch (O'Brien 2023, PMID 36214055; McGruer 2019, PMID 32171355). Cancelled replacement can be experienced as rejection, not as optimization (Caesar 2022, PMID 33988862).

Preferences are measurable. Adaptive conjoint analysis ranks OA medication attributes (Al-Omari 2020, PMID 33376311). An AI-enabled decision aid improved decision quality versus education material (Jayakumar 2021, PMID 33599773), while a PROM-based aid did not change 1-year regret or satisfaction (Marshall 2023, PMID 36575631). NICE tells clinicians to challenge common misconceptions and not to exclude from replacement solely by BMI/age/smoking (NG226, accessed 2026-08-31).

Evidence map

The table catalogs the retrieved studies used to bound this page. A title establishes the paper’s studied question; detailed numerical use requires the abstract or full text.

Study Design signal Evidence contribution Main transfer limit
Hurley 2018 (PMID 29664187) systematic review Exercise interventions and patient beliefs for people with hip, knee or hip and knee osteoarthritis: a mixed methods review. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Reischl 2024 (PMID 39073278) journal study Patient Experience of Stiffness With Knee Osteoarthritis: An Interpretative Description Study. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Zou 2025 (PMID 40762627) journal study The Illness Experience of Patients With Knee Osteoarthritis: A Qualitative Study. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Milić 2021 (PMID 35503946) journal study Informed Patient Is Satisfied Patient - Qualitative Study of Patients' Experience after Total Hip Arthroplasty. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Teo 2021 (PMID 34006028) journal study Patient experiences with physiotherapy for knee osteoarthritis in Australia-a qualitative study. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Thom 2023 (PMID 37434180) journal study Knee osteoarthritis patient perspectives of their care in an australian private physiotherapy setting: a qualitative exploratory int…. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Panter 2021 (PMID 33537932) journal study A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Zhan 2026 (PMID 41857856) journal study Experience of patients with total knee arthroplasty for knee osteoarthritis in China: a patient journey map based on qualitative res…. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Gibbs 2024 (PMID 39702012) journal study General practitioners experience multi-level barriers to implementing recommended care for hip and knee osteoarthritis: a qualitativ…. Scope is verified from the live record; numerical transfer requires the abstract or full report.
McGruer 2019 (PMID 32171355) journal study Māori lived experience of osteoarthritis: a qualitative study guided by Kaupapa Māori principles. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Alyousef 2024 (PMID 37995059) journal study Experiences of Working with Lower Limb Osteoarthritis: A Qualitative Study. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Whitehouse 2025 (PMID 41217479) journal study RecUrrent Intra-articular Corticosteroid injections in Osteoarthritis: the RUbICOn mixed-methods study. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Maillette 2017 (PMID 28347691) journal study Workers' perspectives on return to work after total knee arthroplasty. Scope is verified from the live record; numerical transfer requires the abstract or full report.
King 2024 (PMID 38229918) journal study "You don't put it down to arthritis": A qualitative study of the first symptoms recalled by individuals with knee osteoarthritis. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Snoeker 2013 (PMID 23628788) meta-analysis Risk factors for meniscal tears: a systematic review including meta-analysis. Scope is verified from the live record; numerical transfer requires the abstract or full report.
O'Brien 2023 (PMID 36214055) journal study Understanding the Impact and Tackling the Burden of Osteoarthritis for Aboriginal and Torres Strait Islander People. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Caneiro 2024 (PMID 37317550) journal study Process of change for people with knee osteoarthritis undergoing cognitive functional therapy: a replicated single-case experimental…. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Kloppenburg 2025 (PMID 39755397) review Osteoarthritis. Scope is verified from the live record; numerical transfer requires the abstract or full report.
McAlindon 2014 (PMID 24462672) practice guideline OARSI guidelines for the non-surgical management of knee osteoarthritis. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Wellsandt 2018 (PMID 29251659) review Exercise in the management of knee and hip osteoarthritis. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Harris 2024 (PMID 39280965) journal study Cementless, Cruciate-Retaining Primary Total Knee Arthroplasty Using Conventional Instrumentation: Technical Pearls and Intraoperati…. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Al-Omari 2020 (PMID 33376311) journal study Patients' Preferences Regarding Osteoarthritis Medications: An Adaptive Choice-Based Conjoint Analysis Study. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Bozic 2012 (PMID 21955791) journal study Patient preferences and willingness to pay for arthroplasty surgery in patients with osteoarthritis of the hip. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Babatunde 2025 (PMID 40537272) journal study Process and feasibility of implementing guideline recommendations for the care of osteoarthritis in West Africa. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Anombem 2026 (PMID 41939559) review Comparing the Effectiveness of Radiofrequency Ablation and Intra-articular Steroid Injections in the Management of Knee Osteoarthrit…. Scope is verified from the live record; numerical transfer requires the abstract or full report.
O'Brien 2019 (PMID 31551388) journal study What are the patient factors that impact on decisions to progress to total knee replacement? A qualitative study involving patients …. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Zhao 2025 (PMID 40484958) journal study Patient perceptions regarding ambulatory knee arthroplasties in China. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Te 2024 (PMID 38152392) journal study Exploration of adverse consequences of total knee arthroplasty by patients and knee specialists: a qualitative study. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Yang 2023 (PMID 36580492) journal study A Qualitative Study of Psychosocial Factors in Patients With Knee Osteoarthritis: Insights Learned From an Asian Population. Scope is verified from the live record; numerical transfer requires the abstract or full report.
Isla 2016 (PMID 27313449) journal study Obesity, knee osteoarthritis, and polypathology: factors favoring weight loss in older people. Scope is verified from the live record; numerical transfer requires the abstract or full report.

Audit disposition

Check Result
PubMed identifiers 34/34 unique PMIDs resolved in the 2026-08-31 independent live E-utilities fetch
ClinicalTrials.gov identifiers None cited on this page
Author / year / journal Matched to live PubMed metadata; ePub/print offsets tolerated
Claim review Every remaining claim-to-citation pairing was checked against the live-fetched abstract or registry record; unsupported rows were deleted and overbroad claims were narrowed. No substantive citation issue remains.
## Open questions
  • How can work participation become a treatment endpoint (OQ-20)? (Alyousef 2024, PMID 37995059)
  • How should patient-acceptable symptom state be used without becoming a rigid eligibility cutoff (OQ-22)? Preference studies exist; a locked PASS-as-eligibility rule does not (Al-Omari 2020, PMID 33376311).
  • Can a co-designed hand-OA digital program close the site-specific rehabilitation gap (Dot 9)? (Panter 2021, PMID 33537932)
  • Do decision aids that include mechanism-specific persistent-pain risk change consent and outcomes (Dot 7)? (Jayakumar 2021, PMID 33599773)

References

  1. Hurley M, Dickson K, Hallett R, et al. Exercise interventions and patient beliefs for people with hip, knee or hip and knee osteoarthritis: a mixed methods review. Cochrane Database Syst Rev. 2018;4(4);CD010842. PMID 29664187
  2. Reischl S, Ziebart C, Johnston Z, et al. Patient Experience of Stiffness With Knee Osteoarthritis: An Interpretative Description Study. Musculoskeletal Care. 2024;22(3);e1922. PMID 39073278
  3. Zou Q, Chen N, Cheng J, et al. The Illness Experience of Patients With Knee Osteoarthritis: A Qualitative Study. J Eval Clin Pract. 2025;31(5);e70235. PMID 40762627
  4. Milić M, Nonković M, Buterin A, et al. Informed Patient Is Satisfied Patient - Qualitative Study of Patients' Experience after Total Hip Arthroplasty. Psychiatr Danub. 2021;33(Suppl 4);1303-1308. PMID 35503946
  5. Teo PL, Bennell KL, Lawford B, et al. Patient experiences with physiotherapy for knee osteoarthritis in Australia-a qualitative study. BMJ Open. 2021;11(3);e043689. PMID 34006028
  6. Thom JM, Dennis S, Gibson KA, et al. Knee osteoarthritis patient perspectives of their care in an australian private physiotherapy setting: a qualitative exploratory interview study. BMC Musculoskelet Disord. 2023;24(1);564. PMID 37434180
  7. Panter C, Berry P, Chauhan D, et al. A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis. J Patient Rep Outcomes. 2021;5(1);18. PMID 33537932
  8. Zhan YF, Yang L, Zhang SZ, et al. Experience of patients with total knee arthroplasty for knee osteoarthritis in China: a patient journey map based on qualitative research. BMJ Open. 2026;16(3);e104740. PMID 41857856
  9. Gibbs AJ, Barton CJ, Taylor NF, et al. General practitioners experience multi-level barriers to implementing recommended care for hip and knee osteoarthritis: a qualitative study. BMC Prim Care. 2024;25(1);423. PMID 39702012
  10. McGruer N, Baldwin JN, Ruakere BT, et al. Māori lived experience of osteoarthritis: a qualitative study guided by Kaupapa Māori principles. J Prim Health Care. 2019;11(2);128-137. PMID 32171355
  11. Alyousef YS, Ross MH, Johnston V, et al. Experiences of Working with Lower Limb Osteoarthritis: A Qualitative Study. J Occup Rehabil. 2024;34(3);683-692. PMID 37995059
  12. Whitehouse MR, Judge A, Hawley S, et al. RecUrrent Intra-articular Corticosteroid injections in Osteoarthritis: the RUbICOn mixed-methods study. Health Technol Assess. 2025;29(56);1-167. PMID 41217479
  13. Maillette P, Coutu MF, Gaudreault N. Workers' perspectives on return to work after total knee arthroplasty. Ann Phys Rehabil Med. 2017;60(5);299-305. PMID 28347691
  14. King LK, Mahmoudian A, Waugh EJ, et al. "You don't put it down to arthritis": A qualitative study of the first symptoms recalled by individuals with knee osteoarthritis. Osteoarthr Cartil Open. 2024;6(1);100428. PMID 38229918
  15. Snoeker BA, Bakker EW, Kegel CA, et al. Risk factors for meniscal tears: a systematic review including meta-analysis. J Orthop Sports Phys Ther. 2013;43(6);352-67. PMID 23628788
  16. O'Brien P, Prehn R, Green C, et al. Understanding the Impact and Tackling the Burden of Osteoarthritis for Aboriginal and Torres Strait Islander People. Arthritis Care Res (Hoboken). 2023;75(1);125-135. PMID 36214055
  17. Caneiro JP, O'Sullivan P, Tan JS, et al. Process of change for people with knee osteoarthritis undergoing cognitive functional therapy: a replicated single-case experimental design study. Disabil Rehabil. 2024;46(11);2348-2364. PMID 37317550
  18. Kloppenburg M, Namane M, Cicuttini F. Osteoarthritis. Lancet. 2025;405(10472);71-85. PMID 39755397
  19. McAlindon TE, Bannuru RR, Sullivan MC, et al. OARSI guidelines for the non-surgical management of knee osteoarthritis. Osteoarthritis Cartilage. 2014;22(3);363-88. PMID 24462672
  20. Wellsandt E, Golightly Y. Exercise in the management of knee and hip osteoarthritis. Curr Opin Rheumatol. 2018;30(2);151-159. PMID 29251659
  21. Harris AB, Oni JK. Cementless, Cruciate-Retaining Primary Total Knee Arthroplasty Using Conventional Instrumentation: Technical Pearls and Intraoperative Considerations. JBJS Essent Surg Tech. 2024;14(3);e23.00036. PMID 39280965
  22. Al-Omari B, McMeekin P. Patients' Preferences Regarding Osteoarthritis Medications: An Adaptive Choice-Based Conjoint Analysis Study. Patient Prefer Adherence. 2020;14;2501-2515. PMID 33376311
  23. Bozic KJ, Chiu V, Slover JD, et al. Patient preferences and willingness to pay for arthroplasty surgery in patients with osteoarthritis of the hip. J Arthroplasty. 2012;27(4);503-506.e2. PMID 21955791
  24. Babatunde OO, Adetunji O, Alonge I, et al. Process and feasibility of implementing guideline recommendations for the care of osteoarthritis in West Africa. BMJ Glob Health. 2025;10(6);e018714. PMID 40537272
  25. Anombem OM, Oliver JE, Kilmer J, et al. Comparing the Effectiveness of Radiofrequency Ablation and Intra-articular Steroid Injections in the Management of Knee Osteoarthritis: A Systematic Review. Cureus. 2026;18(3);e104652. PMID 41939559
  26. O'Brien P, Bunzli S, Ayton D, et al. What are the patient factors that impact on decisions to progress to total knee replacement? A qualitative study involving patients with knee osteoarthritis. BMJ Open. 2019;9(9);e031310. PMID 31551388
  27. Zhao G, Ma C, Ma J, et al. Patient perceptions regarding ambulatory knee arthroplasties in China. Arthroplasty. 2025;7(1);28. PMID 40484958
  28. Te Molder MEM, Vriezekolk JE, van Onsem S, et al. Exploration of adverse consequences of total knee arthroplasty by patients and knee specialists: a qualitative study. Rheumatol Adv Pract. 2024;8(1);rkad111. PMID 38152392
  29. Yang SY, Woon EYS, Griva K, et al. A Qualitative Study of Psychosocial Factors in Patients With Knee Osteoarthritis: Insights Learned From an Asian Population. Clin Orthop Relat Res. 2023;481(5);874-884. PMID 36580492
  30. Isla Pera P, Ferrér MC, Nuñez Juarez M, et al. Obesity, knee osteoarthritis, and polypathology: factors favoring weight loss in older people. Patient Prefer Adherence. 2016;10;957-65. PMID 27313449
  31. Skou ST, Roos EM. Good Life with osteoArthritis in Denmark (GLA:D). BMC Musculoskelet Disord. 2017;18:72. PMID 28173795
  32. Jayakumar P, Moore MG, Furlough KA, et al. Comparison of an AI-enabled patient decision aid vs educational material in knee osteoarthritis. JAMA Netw Open. 2021;4:e2037107. PMID 33599773
  33. Marshall DA, Trenaman L, MacDonald KV, et al. Impact of an online PROM-based patient decision aid for total knee arthroplasty. J Eval Clin Pract. 2023;29:513-524. PMID 36575631
  34. Caesar U, Hansson-Olofsson E, Karlsson J, et al. A sense of being rejected: patients' lived experiences of cancelled knee or hip replacement surgery. Scand J Caring Sci. 2022;36:1054-1063. PMID 33988862