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DOI: 10.1055/s-0043-1772608
Engaging Patients and Caregivers to Develop a Patient-Centered Agenda for Comparative Effectiveness Research Focused on the Treatment of Complex Knee Problems
Funding This work was partially funded through a PCORI Eugene Washington PCORI Engagement Award (#EACB-22651).Abstract
Complex articular cartilage loss in the knee is being diagnosed more frequently and earlier in life, and patients are faced with major decisions regarding invasive surgical interventions at increasingly younger ages. There is a critical unmet need to provide patient-centered comparative effectiveness research for the hundreds of thousands of patients faced with these treatment decisions each year. Toward filling the need, we developed the Patient AdvisoR Team iN Orthopaedic ReSearch (PARTNORS) program. We recruited a diverse group of patients and caregivers with lived experiences in dealing with complex knee problems to define patient-centered research priorities for comparative biological and artificial knee surgery research for middle-aged adults. Adapting the Stakeholder Engagement in Question Development and Prioritization Method, PARTNORS defined a 20-question list of patient-centered research questions of factors influencing a patients' choice between biological and artificial knee surgeries. The highest prioritized research question related to functional level postsurgery as it relates to daily activities and recreational activities. The second highest prioritized research questions related to insurance coverage and financial costs. Other prioritized research areas included caregiving needs, implant longevity, recovery and rehabilitation time, patient satisfaction and success rates, individual characteristics, and risks. By engaging a group of patients and caregivers and including them as members of a multidisciplinary research team, comparative effectiveness research that includes patient-centered factors that go beyond typical clinical success indicators for knee surgery can be designed to allow physicians and patients to work together toward evidence-based shared decisions. This shared decision-making process helps to align patients' and health care team's goals and expectations to improve outcomes.
Keywords
patient engagement in research - SEED method - patient-centered research - artificial or biological knee surgeriesPublication History
Received: 15 May 2023
Accepted: 19 July 2023
Article published online:
21 August 2023
© 2023. Thieme. All rights reserved.
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References
- 1 Khan M, Adili A, Winemaker M, Bhandari M. Management of osteoarthritis of the knee in younger patients. CMAJ 2018; 190 (03) E72-E79
- 2 Kurtz SM, Lau E, Ong K, Zhao K, Kelly M, Bozic KJ. Future young patient demand for primary and revision joint replacement: national projections from 2010 to 2030. Clin Orthop Relat Res 2009; 467 (10) 2606-2612
- 3 Wainwright C, Theis JC, Garneti N, Melloh M. Age at hip or knee joint replacement surgery predicts likelihood of revision surgery. J Bone Joint Surg Br 2011; 93 (10) 1411-1415
- 4 Carr AJ, Robertsson O, Graves S. et al. Knee replacement. Lancet 2012; 379 (9823) 1331-1340
- 5 Arirachakaran A, Choowit P, Putananon C, Muangsiri S, Kongtharvonskul J. Is unicompartmental knee arthroplasty (UKA) superior to total knee arthroplasty (TKA)? A systematic review and meta-analysis of randomized controlled trial. Eur J Orthop Surg Traumatol 2015; 25 (05) 799-806
- 6 Dudley TE, Gioe TJ, Sinner P, Mehle S. Registry outcomes of unicompartmental knee arthroplasty revisions. Clin Orthop Relat Res 2008; 466 (07) 1666-1670
- 7 Kim KT, Lee S, Lee JS, Kang MS, Koo KH. Long-term clinical results of unicompartmental knee arthroplasty in patients younger than 60 years of age: minimum 10-year follow-up. Knee Surg Relat Res 2018; 30 (01) 28-33
- 8 Waldstein W, Kolbitsch P, Koller U, Boettner F, Windhager R. Sport and physical activity following unicompartmental knee arthroplasty: a systematic review. Knee Surg Sports Traumatol Arthrosc 2017; 25 (03) 717-728
- 9 Santoso MB, Wu L. Unicompartmental knee arthroplasty, is it superior to high tibial osteotomy in treating unicompartmental osteoarthritis? A meta-analysis and systemic review. J Orthop Surg Res 2017; 12 (01) 50
- 10 Belsey J, Yasen SK, Jobson S, Faulkner J, Wilson AJ. Return to physical activity after high tibial osteotomy or unicompartmental knee arthroplasty: a systematic review and pooling data analysis. Am J Sports Med 2021; 49 (05) 1372-1380
- 11 Johal S, Nakano N, Baxter M, Hujazi I, Pandit H, Khanduja V. Unicompartmental knee arthroplasty: the past, current controversies, and future perspectives. J Knee Surg 2018; 31 (10) 992-998
- 12 Gunaratne R, Pratt DN, Banda J, Fick DP, Khan RJK, Robertson BW. Patient dissatisfaction following total knee arthroplasty: a systematic review of the literature. J Arthroplasty 2017; 32 (12) 3854-3860
- 13 Kim TK, Chang CB, Kang YG, Kim SJ, Seong SC. Causes and predictors of patient's dissatisfaction after uncomplicated total knee arthroplasty. J Arthroplasty 2009; 24 (02) 263-271
- 14 Nakano N, Shoman H, Olavarria F, Matsumoto T, Kuroda R, Khanduja V. Why are patients dissatisfied following a total knee replacement? A systematic review. Int Orthop 2020; 44 (10) 1971-2007
- 15 Sherman SL, Garrity J, Bauer K, Cook J, Stannard J, Bugbee W. Fresh osteochondral allograft transplantation for the knee: current concepts. J Am Acad Orthop Surg 2014; 22 (02) 121-133
- 16 Nuelle CW, Nuelle JAV, Cook JL, Stannard JP. Patient factors, donor age, and graft storage duration affect osteochondral allograft outcomes in knees with or without comorbidities. J Knee Surg 2017; 30 (02) 179-184
- 17 Gross AE, Kim W, Las Heras F, Backstein D, Safir O, Pritzker KPH. Fresh osteochondral allografts for posttraumatic knee defects: long-term followup. Clin Orthop Relat Res 2008; 466 (08) 1863-1870
- 18 Gracitelli GC, Tirico LEP, McCauley JC, Pulido PA, Bugbee WD. Fresh osteochondral allograft transplantation for fractures of the knee. Cartilage 2017; 8 (02) 155-161
- 19 Grimm NL, Levy BJ, Jimenez AE, Arciero RA. Osteotomies for the management of medial compartment defects of the knee. J Knee Surg 2020; 33 (12) 1164-1171
- 20 Amendola A. Unicompartmental osteoarthritis in the active patient: the role of high tibial osteotomy. Arthroscopy 2003; 19 (Suppl. 01) 109-116
- 21 Goh EL, Lou WCN, Chidambaram S, Ma S. The role of joint distraction in the treatment of knee osteoarthritis: a systematic review and quantitative analysis. Orthop Res Rev 2019; 11: 79-92
- 22 Jansen MP, Mastbergen SC, van Heerwaarden RJ. et al. Knee joint distraction in regular care for treatment of knee osteoarthritis: a comparison with clinical trial data. PLoS One 2020; 15 (01) e0227975
- 23 Ritter MA, Lutgring JD, Davis KE, Faris PM, Berend ME. Total knee arthroplasty effectiveness in patients 55 years old and younger: osteoarthritis vs. rheumatoid arthritis. Knee 2007; 14 (01) 9-11
- 24 Meehan JP, Danielsen B, Kim SH, Jamali AA, White RH. Younger age is associated with a higher risk of early periprosthetic joint infection and aseptic mechanical failure after total knee arthroplasty. J Bone Joint Surg Am 2014; 96 (07) 529-535
- 25 Familiari F, Cinque ME, Chahla J. et al. Clinical outcomes and failure rates of osteochondral allograft transplantation in the knee: a systematic review. Am J Sports Med 2018; 46 (14) 3541-3549
- 26 Rand JA, Trousdale RT, Ilstrup DM, Harmsen WS. Factors affecting the durability of primary total knee prostheses. J Bone Joint Surg Am 2003; 85 (02) 259-265
- 27 Sakellariou VI, Poultsides LA, Ma Y, Bae J, Liu S, Sculco TP. Risk assessment for chronic pain and patient satisfaction after total knee arthroplasty. Orthopedics 2016; 39 (01) 55-62
- 28 Jackson JD, Smith J, Shah JP, Wisniewski SJ, Dahm DL. Golf after total knee arthroplasty: do patients return to walking the course?. Am J Sports Med 2009; 37 (11) 2201-2204
- 29 Rucinski K, Leary E, Royse LA. Factors important to patients when making treatment decisions for knee osteoarthritis. J Knee Surg 2023; (e-pub ahead of print). DOI: 10.1055/s-0043-56998.
- 30 Stannard JP, Cook JL. Prospective assessment of outcomes after primary unipolar, multisurface, and bipolar osteochondral allograft transplantations in the knee: a comparison of 2 preservation methods. Am J Sports Med 2020; 48 (06) 1356-1364
- 31 Cook JL, Stannard JP, Stoker AM. et al. Importance of donor chondrocyte viability for osteochondral allografts. Am J Sports Med 2016; 44 (05) 1260-1268
- 32 Cook JL, Stoker AM, Stannard JP. et al. A novel system improves preservation of osteochondral allografts. Clin Orthop Relat Res 2014; 472 (11) 3404-3414
- 33 Stoker AM, Stannard JP, Cook JL. Chondrocyte viability at time of transplantation for osteochondral allografts preserved by the Missouri Osteochondral Preservation System versus Standard Tissue Bank Protocol. J Knee Surg 2018; 31 (08) 772-780
- 34 Stoker AM, Stannard JP, Kuroki K, Bozynski CC, Pfeiffer FM, Cook JL. Validation of the Missouri Osteochondral Allograft Preservation System for the maintenance of osteochondral allograft quality during prolonged storage. Am J Sports Med 2018; 46 (01) 58-65
- 35 Oladeji LO, Stannard JP, Cook CR. et al. Effects of autogenous bone marrow aspirate concentrate on radiographic integration of femoral condylar osteochondral allografts. Am J Sports Med 2017; 45 (12) 2797-2803
- 36 Meric G, Gracitelli GC, Görtz S, De Young AJ, Bugbee WD. Fresh osteochondral allograft transplantation for bipolar reciprocal osteochondral lesions of the knee. Am J Sports Med 2015; 43 (03) 709-714
- 37 Shasha N, Aubin PP, Cheah HK, Davis AM, Agnidis Z, Gross AE. Long-term clinical experience with fresh osteochondral allografts for articular knee defects in high demand patients. Cell Tissue Bank 2002; 3 (03) 175-182
- 38 Giannini S, Buda R, Ruffilli A. et al. Failures in bipolar fresh osteochondral allograft for the treatment of end-stage knee osteoarthritis. Knee Surg Sports Traumatol Arthrosc 2015; 23 (07) 2081-2089
- 39 Esmail L, Moore E, Rein A. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res 2015; 4 (02) 133-145
- 40 Johansson V. From subjects to experts—on the current transition of patient participation in research. Am J Bioeth 2014; 14 (06) 29-31
- 41 Roehr B. More stakeholder engagement is needed to improve quality of research, say US experts. BMJ 2010; (e-pub ahead of print). doi: DOI: 10.1136/bmj.c4193.
- 42 Vandall-Walker V. Patient-researcher engagement in health research: active, mutually beneficial, co-creation. Proc Annu Covenant Health Res Day 2017
- 43 Hoffman A, Montgomery R, Aubry W, Tunis SR. How best to engage patients, doctors, and other stakeholders in designing comparative effectiveness studies. Health Aff (Millwood) 2010; 29 (10) 1834-1841
- 44 Duffett L. Patient engagement: what partnering with patient in research is all about. Thromb Res 2017; 150: 113-120
- 45 Mayer M. Seeking what matters: patients as research partners. Patient 2012; 5 (02) 71-74
- 46 Conway PH, Clancy C. Charting a path from comparative effectiveness funding to improved patient-centered health care. JAMA 2010; 303 (10) 985-986
- 47 Zimmerman E, Cook S, Woolf S. et al. Developing a Method for Engaging People in Setting Research Agendas. Patient-Centered Outcomes Research Institute (PCORI); 2020. . (e-pub ahead of print). DOI: 10.25302/04.2020.ME.131007664
- 48 Zimmerman EB, Rafie CL, Biney-Amissah T, Lee S. The SEED Method for Stakeholder Engagement in Strategy Development and Action Planning: Online Toolkit. Published 2022, at: Accessed December 02, 2022 at: https://campus.extension.org/course/view.php?id=2146
- 49 Zimmerman EB, Cook S. The SEED Method Toolkit for Stakeholder Engagement in Question Development and Prioritization. Virginia Commonwealth University, Center on Society and Health; 2017 at: Accessed December 02, 2022 at: https://societyhealth.vcu.edu/media/society-health/pdf/seed-method-files/SEEDMethodToolkit_abbreviatedPDF_Final.pdf
- 50 Patient-Centered Outcomes Research Institute (PCORI). Best Practices in Multi-Stakeholder Team Science | Patient-Centered Outcomes Research Institute. at: Accessed February 16, 2023 at: https://research-teams.pcori.org/best-practices#Establishing%20Team%20Norms
- 51 Patient Engagement in Health Research. A How-to Guide for Researchers | BC SUPPORT Unit. at: Accessed July 06, 2020 at: https://absporu.ca/wp-content/uploads/2020/05/How-To-Guide-Researcher-Version-8.0-May-2018-1.pdf
- 52 Vandall-Walker V. Alberta SPOR Support Unit: Patient Engagement Platform. Competencies, strengths, and readiness tools, and suggested PaRE course content (v. 2) [Patient and researcher engagement assessment tools]. Beyond participant role: Meaningful patient/public engagement in qualitative health research. Presented at: 2019 IIQM Qualitative Methods Conference; April 2019; Brisbane, Australia.
- 53 Godfrey EM, Thayer EK, Mentch L. et al. Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community. Res Involv Engagem 2021; 7 (01) 86
- 54 Patient-Centered Outcomes Research Institute (PCORI). Research Fundamentals: Preparing You to Successfully Contribute to Research. Research Fundamentals: Preparing You to Successfully Contribute to Research | PCORI. Published July 8, 2020 . Accessed January 9, 2023 At: https://www.pcori.org/engagement/research-fundamentals
- 55 Glanz K, Rimer BK, Viswanath K. , Eds. Health Behavior: Theory, Research, and Practice. 5 edn. Jossey-Bass; 2015
- 56 Sheridan S, Schrandt S, Forsythe L, Hilliard TS, Paez KA. Advisory Panel on Patient Engagement (2013 inaugural panel). The PCORI engagement rubric: promising practices for partnering in research. Ann Fam Med 2017; 15 (02) 165-170 DOI: 10.1370/afm.2042.
- 57 Engagement Rubric. Engagement Rubric | PCORI. Published May 3, 2017 Accessed February 15, 2023 at: https://www.pcori.org/resources/engagement-rubric
- 58 Owyang D, Bakhsh A, Brewer D, Boughton OR, Cobb JP. Patient and public involvement within orthopaedic research: a systematic review. J Bone Joint Surg Am 2021; 103 (13) e51
- 59 Thienpont E. Does advanced cryotherapy reduce pain and narcotic consumption after knee arthroplasty?. Clin Orthop Relat Res 2014; 472 (11) 3417-3423
- 60 Wall PDH, Parsons NR, Parsons H. et al; P. D. H. Wall on behalf of A. P. Sprowson,† M. L. Costa, PAKA Study Group. A pragmatic randomised controlled trial comparing the efficacy of a femoral nerve block and periarticular infiltration for early pain relief following total knee arthroplasty. Bone Joint J 2017; 99-B (07) 904-911
- 61 Sepucha K, Bedair H, Yu L. et al. Decision support strategies for hip and knee osteoarthritis: less is more: a randomized comparative effectiveness trial (DECIDE-OA Study). J Bone Joint Surg Am 2019; 101 (18) 1645-1653
- 62 Sepucha KR, Vo H, Bedair H. et al. Evaluating Different Ways to Help Patients Make Informed Choices about Surgery for Knee or Hip Osteoarthritis. Patient-Centered Outcomes Research Institute (PCORI); 2021
- 63 Piva SR, Schneider MJ, Moore CG. et al. Effectiveness of later-stage exercise programs vs usual medical care on physical function and activity after total knee replacement: a randomized clinical trial. JAMA Netw Open 2019; 2 (02) e190018
- 64 Piva S, Moore C, Catelani MB, Schneider M, Gil A, Irrgang J. Comparing treatments for improving physical function in patients who had knee replacement surgery. Patient-Centered Outcomes Research Institute (PCORI); 2020
- 65 Selker HP, Daudelin DH, Ruthazer R. et al. The use of patient-specific equipoise to support shared decision-making for clinical care and enrollment into clinical trials. J Clin Transl Sci 2019; 3 (01) 27-36
- 66 Selker H, Daudelin D, Ruthazer R. et al. Developing Software to Predict Patient Responses to Knee Osteoarthritis Treatments and to Identify Patients for Possible Enrollment in Randomized Controlled Trials. Patient-Centered Outcomes Research Institute® (PCORI); 2019. (e-pub ahead of print). doi: DOI: 10.25302/9.2019.ME.130602327
- 67 Zimmerman EB, Cook SK, Haley AD, Woolf SH, Price SK. Engaging Richmond Team. A patient and provider research agenda on diabetes and hypertension management. Am J Prev Med 2017; 53 (01) 123-129
- 68 Rafie CL, Zimmerman EB, Moser DE, Cook S, Zarghami F. A lung cancer research agenda that reflects the diverse perspectives of community stakeholders: process and outcomes of the SEED method. Res Involv Engagem 2019; 5 (01) 3
- 69 Zimmerman EB, Rafie CL, Moser DE, Hargrove A, Noe T, Mills CA. Participatory action planning to address the opioid crisis in a rural Virginia community using the SEED Method. J Particip Res Methods 2020; (e-pub ahead of print). DOI: 10.35844/001c.13182.