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An Evidence-Based Theory About PRO Use in Kidney Care: A Realist Synthesis

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Abstract

Background

There is international interest on the use of patient-reported outcomes (PROs) in nephrology.

Objectives

Our objectives were to develop a kidney-specific program theory about use of PROs in nephrology that may enhance person-centered care, both at individual and aggregated levels of care, and to test and refine this theory through a systematic review of the empirical literature. Together, these objectives articulate what works or does not work, for whom, and why.

Methods

Realist synthesis methodology guided the electronic database and gray literature searches (in January 2017 and October 2018), screening, and extraction conducted independently by three reviewers. Sources included all nephrology patients and/or practitioners. Through a process of extraction and synthesis, each included source was examined to assess how contexts may trigger mechanisms to influence specific outcomes.

Results

After screening 19,961 references, 84 theoretical and 34 empirical sources were used. PROs are proposed to be useful for providing nephrology care through three types of use. The first type is use of individual-level PRO data at point of care, receiving the majority of theoretical and empirical explorations. Clinician use to support person-centered care, and patient use to support patient engagement, are purported to improve satisfaction, health, and quality of life. Contextual factors specific to the kidney care setting that may influence the use of PRO data include the complexity of kidney disease symptom burden, symptoms that may be stigmatized, comorbidities, and time or administrative constraints in dialysis settings. Electronic collection of PROs may facilitate PRO use given these contexts. The second type is use of aggregated PRO data at point of care, including public reporting of PROs to inform decisions at point of care and improve quality of care, and use of PROs for treatment decisions. The third type is use of aggregated PRO data by organizations, including publicly available PRO data to compare centers. In single-payer systems, regular collection of PROs by dialysis centers can be achieved through economic incentives. Both the second and third types of PRO use include pressures that may trigger quality improvement processes.

Conclusion

The current state of the evidence is primarily theoretical. There is pressing need for empirical research to improve the evidence-base of PRO use at individual and aggregated levels of nephrology care.

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References

  1. Greenhalgh J. The applications of PROs in clinical practice: what are they, do they work, and why? Qual Life Res. 2009;18(1):115–23.

    PubMed  Google Scholar 

  2. National Health Service (NHS). ‘Think Kidneys.’ Transforming participation in chronic kidney disease (CKD). A Unique NHS Programme to Help People With CKD Live Their Best Life 2019. https://www.thinkkidneys.nhs.uk/ckd/. Accessed 14 Apr 2021.

  3. AJKD blog. #NephMadness 2018 Champion: Patient-Reported Outcomes 2018 [updated 6 April 2018. https://ajkdblog.org/2018/04/06/nephmadness-2018-champion-patient-reported-outcomes/. Accessed 14 Apr 2021.

  4. Fayers PM, Machin D. Quality of life: The assessment, analysis and reporting of patient-reported outcomes. Oxford: Wiley; 2016.

    Google Scholar 

  5. Kingsley C, Patel S. Patient-reported outcome measures and patient-reported experience measures. BJA Education. 2017;17(4):137–44.

    Google Scholar 

  6. Manns B, Hemmelgarn B, Lillie E, Dip SCPG, Cyr A, Gladish M, et al. Setting Research Priorities for Patients on or Nearing Dialysis. Clin J Am Soc Nephrol. 2014;9(10):1813–21.

    PubMed  PubMed Central  Google Scholar 

  7. Bear RA, Stockie S. Patient engagement and patient-centred care in the management of advanced chronic kidney disease and chronic kidney failure. CJKHD. 2014;1(1):24.

    Google Scholar 

  8. Finkelstein FO, Wuerth D, Finkelstein SH. Health related quality of life and the CKD patient: challenges for the nephrology community. Kidney Int. 2009;76(9):946–52.

    PubMed  Google Scholar 

  9. Perrone RD, Coons SJ, Cavanaugh K, Finkelstein F, Meyer KB. Patient-reported outcomes in clinical trials of CKD-related therapies: Report of a symposium sponsored by the National Kidney Foundation and the US Food and Drug Administration. Am J Kidney Dis. 2013;62(6):1046–57.

    PubMed  Google Scholar 

  10. Tong A, Winkelmayer WC, Wheeler DC, van Biesen W, Tugwell P, Manns B, et al. Nephrologists’ perspectives on defining and applying patient-centered outcomes in hemodialysis. Clin J Am Soc Nephrol. 2017;12(3):454–66.

    PubMed  PubMed Central  Google Scholar 

  11. Håkansson Eklund J, Holmström IK, Kumlin T, Kaminsky E, Skoglund K, Höglander J, et al. “Same same or different?” A review of reviews of person-centered and patient-centered care. Patient Educ Couns. 2019;102(1):3–11.

    PubMed  Google Scholar 

  12. Hewitt-Taylor J. Developing person-centred practice: a practical approach to quality healthcare. London: Macmillan International Higher Education; 2015.

    Google Scholar 

  13. Nolte E, Anell A. Achieving person-centred health systems: levers and strategies. In: Anell A, Nolte E, Merkur S, editors. Achieving person-centred health systems: evidence, strategies and challenges. European Observatory on health systems and policies. Cambridge: Cambridge University Press; 2020. p. 75–114.

    Google Scholar 

  14. El-Alti L, Sandman L, Munthe C. Person centered care and personalized medicine: Irreconcilable opposites or potential companions? Health Care Anal. 2019;27(1):45–59.

    PubMed  Google Scholar 

  15. Schlesinger M, Grob R, Shaller D. Using patient-reported information to improve clinical practice. Health Serv Res. 2015;50(Suppl 2):2116–54.

    PubMed  PubMed Central  Google Scholar 

  16. Aiyegbusi OL, Kyte D, Cockwell P, Marshall T, Dutton M, Slade A, et al. Using patient-reported outcome measures (PROMs) to promote quality of care and safety in the management of patients with advanced chronic kidney disease (PRO-trACK project): a mixed-methods project protocol. BMJ Open. 2017;7(6):e016687.

    PubMed  PubMed Central  Google Scholar 

  17. Centers for Medicare & Medicaid Services (CMS). Clinical Performance Measures (CPM) Project 2013 [updated 4 August 2013. https://www.cms.gov/Medicare/End-Stage-Renal-Disease/CPMProject. Accessed 7 May 2021.

  18. UK Renal Registry. Welcome to the UK Renal Registry [updated 2019. Available from: https://www.renalreg.org/.

  19. Greenhalgh J, Dalkin S, Gibbons E, Wright J, Valderas JM, Meads D, et al. How do aggregated patient-reported outcome measures data stimulate health care improvement? A realist synthesis. J Health Serv Res Policy. 2018;23(1):57–65.

    PubMed  Google Scholar 

  20. Greenhalgh J, Dalkin S, Gooding K, Gibbons E, Wright J, Meads D, et al. Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care. Health Services and Delivery Research. Southampton (UK): NIHR J Libr. 2017. https://doi.org/10.3310/hsdr05020.

  21. Reading MJ, Merrill JA. Converging and diverging needs between patients and providers who are collecting and using patient-generated health data: an integrative review. J Am Med Inform Assoc. 2018;25(6):759–71.

    PubMed  PubMed Central  Google Scholar 

  22. Santana MJ, Feeny D. Framework to assess the effects of using patient reported outcome measures in chronic care management. Qual Life Res. 2014;23:1505–13.

    PubMed  Google Scholar 

  23. Valderas JM, Alonso J. Patient reported outcome measures: a model based classification system for research and clinical practice. Qual Life Res. 2008;17(9):1125–35.

    PubMed  Google Scholar 

  24. Finkelstein FO, Finkelstein SH. Time to Rethink Our Approach to Patient-Reported Outcome Measures for ESRD. Clin J Am Soc Nephrol. 2017;12(11):1885–8.

    PubMed  PubMed Central  Google Scholar 

  25. Peipert JD, Hays RD. Using patient-reported measures in dialysis clinics. Clin J Am Soc Nephrol. 2017;12(11):1889–91.

    PubMed  PubMed Central  Google Scholar 

  26. Wong G, Westhorp G, Pawson R, Greenhalgh T. Realist synthesis: RAMESES training materials 2013. http://www.ramesesproject.org/Standards_and_Training_materials.php. Accessed 14 Apr 2021.

  27. Jagosh J. Realist Methodology for Complexity-Mindful Evaluations in the Food, Energy, Water and Climate Sectors [Webinar]. United Kingdom2017.

  28. Pawson R. The science of evaluation: a realist manifesto. London: SAGE Publications Ltd.; 2014.

  29. Jagosh J, Bush PL, Salsberg J, Macaulay AC, Greenhalgh T, Wong G, et al. A realist evaluation of community-based participatory research: Partnership synergy, trust building and related ripple effects. BMC Public Health. 2015;15(725):1–11.

    Google Scholar 

  30. Schick-Makaroff K, Thummapol O, Thompson S, Flynn R, Karimi-Dehkordi M, Klarenbach S, et al. Strategies for incorporating patient-reported outcomes in the care of people with chronic kidney disease (PRO kidney): a protocol for a realist synthesis. Syst Rev. 2019;8(1):20.

    PubMed  PubMed Central  Google Scholar 

  31. Schick-Makaroff K, Sawatzky R, Thompson S, Klarenbach S, Flynn R. Patient-reported outcomes in clinical kidney practice (PRO Kidney): A realist synthesis. PROSPERO Registration CRD42017056063 2017. http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42017056063. Accessed 7 May 2021.

  32. Pawson R. Evidence-Based policy: a realist perspective. London: Sage Publications; 2006. p. 2006.

    Google Scholar 

  33. Souto RQ, Khanassov V, Hong QN, Bush PL, Vedel I, Pluye P. Systematic mixed studies reviews: updating results on the reliability and efficiency of the Mixed Methods Appraisal Tool. Int J Nurs Stud. 2015;52:500–1.

    PubMed  Google Scholar 

  34. Pawson R. Digging for nuggets: how bad research can yield good evidence. Int J Soc Res Methodol. 2006;9:127–42.

    Google Scholar 

  35. Jackson SF, Kolla G. A new realistic evaluation analysis method: Linked coding of context, mechanism, and outcome relationships. Am J Eval. 2012;33(3):339–49.

    Google Scholar 

  36. Flynn R, Schick-Makaroff K, Levay A, Greenhalgh J. Developing an initial program theory to explain how patient-reported outcomes are used in health care settings: Methodological process and lessons learned. Int J Qual Meth. 2020;19:1–11.

    Google Scholar 

  37. Greenhalgh J, Gooding K, Gibbons E, Dalkin S, Wright J, Valderas J, et al. How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis. JPRO. 2018;2(1):42.

    PubMed  PubMed Central  Google Scholar 

  38. Larson EL, Patel SJ, Evans D, Saiman L. Feedback as a strategy to change behaviour: the devil is in the details. J Eval Clin Pract. 2013;19(2):230–4.

    PubMed  Google Scholar 

  39. Sekhon M, Cartwright M, Francis JJ. Acceptability of healthcare interventions: an overview of reviews and development of a theoretical framework. BMC Health Serv Res. 2017;17(1):88.

    PubMed  PubMed Central  Google Scholar 

  40. Greene SM, Reid RJ, Larson EB. Implementing the learning health system: From concept to action. Ann Intern Med. 2012;157(3):207–10.

    PubMed  Google Scholar 

  41. Wong G, Westhorp G, Manzano A, Greenhalgh J, Jagosh J, Greenhalgh T. RAMSES II reporting standards for realist evaluations. BMC Med. 2016;14(1):1–18.

    CAS  Google Scholar 

  42. Wong G, Greenhalgh T, Westhorp G, Pawson R. Development of methodological guidance, publication standards and training materials for realist and meta-narrative reviews: the RAMESES (Realist And Meta-narrative Evidence Syntheses - Evolving Standards) project. Health Services and Delivery Research. 2014;2(30).

  43. Meers C, Singer MA. Health-related quality of life assessment in clinical practice. CANNT J. 1996;6(2):29–31.

    CAS  Google Scholar 

  44. Finkelstein FO, Arsenault KL, Taveras A, Awuah K, Finkelstein SH. Assessing and improving the health-related quality of life of patients with ESRD. Nat Rev Neph. 2012;8(12):718–24.

    Google Scholar 

  45. van der Veer S. Patient-reported outcome measures in kidney disease 2016. http://epidemionephro.com/nephrologie/sites/default/files/pdf/Van%20der%20Veer_Patient-reported%20outcomes%20in%20kidney%20disease_ISRE%202016.pdf. Accessed 7 May 2021.

  46. Cavanaugh KL. Prioritizing patient-centered care implementation and research for patients with kidney disease. Semin Dial. 2015;28(2):131–40.

    PubMed  Google Scholar 

  47. Kalantar-Zadeh K, Unruh M. Health related quality of life in patients with chronic kidney disease. Int Urol Nephrol. 2005;37(2):367–78.

    PubMed  Google Scholar 

  48. Novak M, Mucsi I, Mendelssohn DC. Screening for depression: Only one piece of the puzzle. Nephrol Dial Transplant. 2013;28(6):1336–40.

    CAS  PubMed  Google Scholar 

  49. Tang E, Bansal A, Novak M, Mucsi I. Patient-reported outcomes in patients with chronic kidney disease and kidney transplant: Part 1. Front Med. 2017;4:254.

    Google Scholar 

  50. Iyasere O, Brown EA. Determinants of quality of life in advanced kidney disease: time to screen? Postgrad Med J. 2014;90(1064):340–7.

    PubMed  Google Scholar 

  51. Mucsi I. Health-related quality of life in chronic kidney disease patients. Prim Psychiatry. 2008;15(1):46–51.

    Google Scholar 

  52. Kidney Care Quality Alliance. KCQA patient-reported outcomes initiative in-person meeting 2017. https://kidneycarepartners.com/wp-content/uploads/2017/06/txKCQAPROsIn-PersonSummary05-27-17FINAL.pdf. Accessed 15 Apr 2021.

  53. Mingardi G, for the DIA-QOL-Group. Quality of life and end stage renal disease therapeutic programs. Int J Artif Organs. 1998;21(11):741–7.

    CAS  PubMed  Google Scholar 

  54. Smith V, Wise K. Evaluating nurses’ action outcomes and exploring their perspectives of implementing the POS-S (Renal) assessment tool for haemodialysis patients. Ren Soc Australas J. 2017;13(1):14–21.

    Google Scholar 

  55. Schick-Makaroff K, Molzahn AE. Evaluation of real-time use of electronic patient-reported outcome data by nurses with patients in home dialysis clinics. BMC Health Serv Res. 2017;17(1):439.

    PubMed  PubMed Central  Google Scholar 

  56. Meyer KB, Espindle DM, DeGiacomo JM, Jenuleson CS, Kurtin PS, Davies AR. Monitoring dialysis patients’ health status. Am J Kidney Dis. 1994;24(2):267–79.

    CAS  PubMed  Google Scholar 

  57. Callahan MB. Using quality of life measurement to enhance interdisciplinary collaboration. Adv Ren Replace Ther. 2001;8(2):148–51.

    CAS  PubMed  Google Scholar 

  58. Keogh AM, Carfray A, Andrews S, Jenkins J, Longmate R, Nichols N, et al. Assessing quality of life in routine clinical practice: A pilot study. EDTNA-ERCA Journal. 2000;26(2):27–30.

    Google Scholar 

  59. Buck N, Roy C, Atcherson E. Life with dialysis: structured interviews provide feedback. J Nephrol Nurs. 1986;3(2):78–81.

    CAS  PubMed  Google Scholar 

  60. Trillingsgaard Mejdahl C, Nielsen BK, Hjøllund NH, Homborg K. Use of patient-reported outcomes in outpatient settings as a means of patient involvement and self-management support - a qualitative study of the patient perspective. EJPCH. 2016;4(2):359–67.

    Google Scholar 

  61. Weisbord SD, Mor MK, Green JA, Sevick MA, Shields AM, Zhao X, et al. Comparison of symptom management strategies for pain, erectile dysfunction, and depression in patients receiving chronic hemodialysis: a cluster randomized effectiveness trial. Clin J Am Soc Nephrol. 2013;8(1):90–9.

    PubMed  Google Scholar 

  62. Wuerth D, Finkelstein SH, Ciarcia J, Peterson R, Kliger AS, Finkelstein FO. Identification and treatment of depression in a cohort of patients maintained on chronic peritoneal dialysis. Am J Kidney Dis. 2001;37(5):1011–7.

    CAS  PubMed  Google Scholar 

  63. Dec E. Impact of locus of control on clinical outcomes in renal dialysis. Adv Chronic Kidney Dis. 2006;13(1):76–85.

    PubMed  Google Scholar 

  64. Naik N, Hess R, Unruh M. Measurement of health-related quality of life in the care of patients with ESRD: isn’t this the metric that matters? Semin Dial. 2012;25(4):439–44.

    PubMed  Google Scholar 

  65. Unruh ML, Hess R. Assessment of health-related quality of life among patients with chronic kidney disease. Adv Chronic Kidney Dis. 2007;14(4):345–52.

    PubMed  Google Scholar 

  66. Fukuhara S, Yamazaki S, Hayashino Y, Green J. Measuring health-related quality of life in patients with end-stage renal disease: why and how. Nat Clin Pract Nephrol. 2007;3(7):352–3.

    PubMed  Google Scholar 

  67. Kyte D, Bishop J, Bretell E, Calvert M, Cockwell P, Dutton M, et al. Use of an electronic patient-reported outcome measure in the management of patients with advanced chronic kidney disease: the RePROM pilot trial protocol. BMJ Open. 2018;8(e026080):1–7.

  68. Saby A, Miller LS. Functional assessment in end-stage renal disease: enhancing quality of life. Semin Dial. 2016;29(2):170–2.

    PubMed  Google Scholar 

  69. Fraser SDS, Taal MW. Multimorbidity in people with chronic kidney disease: implications for outcomes and treatment. Curr Opin Nephrol Hypertens. 2016;25(6):465–72.

    CAS  PubMed  Google Scholar 

  70. Hays RD. Assessing patient-reported outcomes of Hemodialysis 2017. https://slideplayer.com/slide/13777566/. Accessed 15 Apr 2021.

  71. Unruh ML, Weisbord SD, Kimmel PL. Health-related quality of life in nephrology research and clinical practice. Semin Dial. 2005;18(2):82–90.

    PubMed  Google Scholar 

  72. Kurtin PS, Davies AR, Meyer KB, DeGiacomo JM, Kantz ME. Patient-based health status measures in outpatient dialysis. Early experiences in developing an outcomes assessment program. Med Care. 1992;30(5 Suppl):MS136-149.

    CAS  PubMed  Google Scholar 

  73. Ong SW, Jassal SV, Miller JA, Porter EC, Cafazzo JA, Seto E, et al. Integrating a smartphone-based self-management system into usual care of advanced CKD. Clin J Am Soc Nephrol. 2016;11(6):1054–62.

    CAS  PubMed  PubMed Central  Google Scholar 

  74. Aiyegbusi OL, Kyte D, Cockwell P, Marshall T, Dutton M, Walmsley-Allen N, et al. Development and usability testing of an electronic patient-reported outcome measure (ePROM) system for patients with advanced chronic kidney disease. Comput Biol Med. 2018;101:120–7.

    PubMed  Google Scholar 

  75. Schick-Makaroff K, Molzahn A. Strategies to use tablet computers for collection of electronic patient-reported outcomes. Health Qual Life Outcomes. 2015;13:2.

    PubMed  PubMed Central  Google Scholar 

  76. Anderson NE, Calvert M, Cockwell P, Dutton M, Aiyegbusi OL, Kyte D. Using patient-reported outcome measures (PROMs) to promote quality of care in the management of patients with established kidney disease requiring treatment with haemodialysis in the UK (PROM-HD): a qualitative study protocol. BMJ Open. 2018;8(10):e021532.

    PubMed  PubMed Central  Google Scholar 

  77. Wong D, Cao S, Ford H, Richardson C, Belenko D, Tang E, et al. Exploring the use of tablet computer-based electronic data capture system to assess patient reported measures among patients with chronic kidney disease: a pilot study. BMC Nephrol. 2017;18(1):356.

    PubMed  PubMed Central  Google Scholar 

  78. Chen SS, Al Mawed S, Unruh M. Health-related quality of life in end-stage renal disease patients: How often should we ask and what do we do with the answer? Blood Purif. 2016;41(1–3):218–24.

    PubMed  Google Scholar 

  79. Breckenridge K, Bekker HL, Gibbons E, van der Veer SN, Abbott D, Briancon S, et al. How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting. Nephrol Dial Transplant. 2015;30(10):1605–14.

    PubMed  PubMed Central  Google Scholar 

  80. Ontario Renal Network. Symptom management: your symptoms matter 2019. https://www.ontariorenalnetwork.ca/en/about/our-work/symptom-management. Accessed 15 Apr 2021.

  81. Finkelstein FO. Performance measures in dialysis facilities: what is the goal? Clin J Am Soc Nephrol. 2015;10(1):156–8.

    PubMed  Google Scholar 

  82. Sledge R. KDQOL-36 and the interdisciplinary team. Nephrol News Issues. 2010;24(7):36–8.

    PubMed  Google Scholar 

  83. Cornell KA, Kitsen J. Pursuing quality improvement: A social work perspective. Adv Ren Replace Ther. 1995;2(2):121–6.

    CAS  PubMed  Google Scholar 

  84. Painter P, Stewart AL, Carey S. Physical functioning: definitions, measurement, and expectations. Adv Ren Replace Ther. 1999;6(2):110–23.

    CAS  PubMed  Google Scholar 

  85. Stec P, Schatell D, Witten B. Why we need a health-related quality of life CPM. Nephrol News Issues. 2008;22(3):28–30 (5).

    PubMed  Google Scholar 

  86. Weiner S, Fink JC. Telemedicine to promote patient safety: Use of phone-based interactive voice-response system to reduce adverse safety events in pre-dialysis CKD. Adv Chronic Kidney Dis. 2017;24(1):31–8.

    PubMed  PubMed Central  Google Scholar 

  87. Braun Curtin R, Lowrie EG, DeOreo PB. Self-reported functional status: an important predictor of health outcomes among end-stage renal disease patients. Adv Ren Replace Ther. 1999;6(2):133–40.

    Google Scholar 

  88. Davison SN, Jassal SV. Supportive care: integration of patient-centered kidney care to manage symptoms and geriatric syndromes. Clin J Am Soc Nephrol. 2016;11(10):1882–91.

    PubMed  PubMed Central  Google Scholar 

  89. Rettig RA, Sadler JH, Meyer KB, Wasson JH, Parkerson GR Jr, Kantz B, et al. Assessing health and quality of life outcomes in dialysis: a report on an Institute of Medicine workshop. Am J Kidney Dis. 1997;30(1):140–55.

    CAS  PubMed  Google Scholar 

  90. Blake C, Plant WD. Chapter 74: measures to improve quality of life in end-stage renal disease patients. In: Wilcox CS, editor. Therapy in nephrology & hypertension a companion to brenner & rector’s the kidney. 3rd ed. Saunders; 2008. p. 818–27.

    Google Scholar 

  91. Finkelstein FO, Finkelstein SH. Reassessment of the care of the patient with chronic kidney disease. Kidney Int. 2010;77(11):945–7.

    PubMed  Google Scholar 

  92. Chen SS, Unruh M, Williams M. In quality we trust; but quality of life or quality of care? Semin Dial. 2016;29(2):103–10.

    PubMed  Google Scholar 

  93. Oberley ET, Sadler JH, Alt PS. Renal rehabilitation: obstacles, progress, and prospects for the future. Am J Kidney Dis. 2000;35:S141–7.

    CAS  PubMed  Google Scholar 

  94. Prescott MR. How to make the new Conditions for Coverage work in your dialysis clinic: making the most of the kidney disease quality of life survey. Nephrol News Issues. 2009;23(9):44–5.

    PubMed  Google Scholar 

  95. van der Veer SN, Aresi G, Gair R. Incorporating patient-reported symptom assessments into routine care for people with chronic kidney disease. CKJ. 2017;10(6):783–7.

    PubMed  PubMed Central  Google Scholar 

  96. Friedman AN, Fadem SZ. Making measures count. Clin J Am Soc Nephrol. 2011;6(6):1507–11.

    PubMed  Google Scholar 

  97. Cooke T, Dean S, Johnson J, Chuck A, editors. Patient-reported outcomes measurement in Alberta potential of the EQ-5D. In: Patient-Reported Outcomes Measurement in Alberta Potential of the EQ-5D; 2012; Canmore, Alberta.

  98. Kliger AS, Fishbane S, Finkelstein FO. Erythropoietic stimulating agents and quality of a patient’s life: individualizing anemia treatment. Clin J Am Soc Nephrol. 2012;7(2):354–7.

    CAS  PubMed  Google Scholar 

  99. Aawar N, Moore R, Riley S, Salek S. Interpretation of renal quality of life profile scores in routine clinical practice: an aid to treatment decision-making. Qual Life Res. 2016;25(7):1697–702.

    PubMed  Google Scholar 

  100. Bamford J, Wirz L. Piloting psychology annual views as a method of measuring psychological distress and quality of life in paediatric renal transplant patients. Biomed Res Int. 2016;2016:1685362.

    PubMed  PubMed Central  Google Scholar 

  101. Gustafson S, Burrows-Hudson S. Adding patient feedback on quality of life to the outcomes assessment picture. Nephrol News Issues. 1997;11(8):22–3.

    CAS  PubMed  Google Scholar 

  102. Mendu ML, Waikar SS, Rao SK. Kidney disease population health management in the era of accountable care: a conceptual framework for optimizing care across the CKD spectrum. Am J Kidney Dis. 2017;70(1):122–31.

    PubMed  Google Scholar 

  103. Witten B. Demystifying the KDQOL-36 and using it to plan patient care. Nephrol News Issues. 2012;26(12):40–9.

    PubMed  Google Scholar 

  104. Callahan MB, LeSage L, Johnstone S. A model for patient participation in quality of life measurement to improve rehabilitation outcomes. Nephrol News Issues. 1999;13(1):33–7.

    CAS  PubMed  Google Scholar 

  105. Bunani AD, Allehbi AM. The association between social support and psychosocial factors upon mortality and quality of life. Hemodial Int. 2013;17(1):39.

    Google Scholar 

  106. Bunani AD, Bunani ED. The association between social support and psychosocial factors upon mortality and quality of life. Nephrol Dial Transplant. 2013;28:i266.

    Google Scholar 

  107. Bunani AD, Sedgewick JM, Lehbi AM. The association between social support and psychosocial factors upon mortality and quality of life. Nephrol. 2012;17:80.

    Google Scholar 

  108. Kliger AS. Quality measures for dialysis: Time for a balanced scorecard. Clin J Am Soc Nephrol. 2016;11(2):363–8.

    PubMed  Google Scholar 

  109. Schick-Makaroff K, Molzahn A. Patient satisfaction with the use of tablet computers: a pilot study in two outpatient home dialysis clinics. CJKHD. 2014;1(22):1–6.

  110. Ong S, Porter E, Jassal S, Logan A, Miller J. My KidneyCare Centre Kiosk: description of an electronic self-management tool for patients with chronic kidney disease. CANNT J. 2012;22(2):15–6.

    Google Scholar 

  111. Flythe JE, Dorough A, Narendra JH, Wingard RL, Dalrymple LS, DeWalt DA. Development and content validity of a hemodialysis symptom patient-reported outcome measure. Qual Life Res. 2019;28(1):253–65.

    PubMed  Google Scholar 

  112. Ong SW, Jassal SV, Porter E, Logan AG, Miller JA. Using an electronic self-management tool to support patients with chronic kidney disease (CKD): a CKD clinic self-care model. Semin Dial. 2013;26(2):195–202.

    PubMed  Google Scholar 

  113. Iannuzzella F, Stefani A, Corradini M, Pasquali S. Evaluation of a telemonitoring system based on a mobile medical app in a cohort of peritoneal dialysis patients: a pilot study. Nephrol Dial Transplant. 2016;31:i241.

    Google Scholar 

  114. White S. Telemonitoring in the renal program: Empowering patients and engaging providers. Perit Dial Int. 2011;1:S29.

    Google Scholar 

  115. Pisarski P, Hils S, Schmid A, Kramer-Zucker A, Janigen B. Telemedicin as an innovative project-study in adherence improvement after living kideney transplantation at the transplantation center Freiburg. Transpl Int. 2013;26(S2):73.

    Google Scholar 

  116. Hils S, Schmid A, Bogatyreva L, Hauschke D, Pisarski P. Telemedical supported aftercare as an innovative project-study improves the quality of life after living kidney transplantation-a single center experience. Transplantation. 2014;98:843.

    Google Scholar 

  117. Molnar AO, Barua M, Konvalinka A, Schick-Makaroff K. Patient engagement in kidney research: opportunities and challenges ahead. CJKHD. 2017;4:2054358117740583.

    Google Scholar 

  118. Neul SK. Quality of life intervention planning: pilot study in youth with kidney failure who are on dialysis. Nephrol Nurs J. 2015;42(5):487–97.

    PubMed  Google Scholar 

  119. Kinchen KS, Powe NR. Measuring and managing health outcomes and quality of care in end-stage renal disease. Dis Manag Health Out. 2001;9(9):483–93.

    Google Scholar 

  120. Cavanaugh KL. Patient experience assessment is a requisite for quality evaluation: a discussion of the In-center Hemodialysis Consumer Assessment of Health Care Providers and Systems (ICH CAHPS) survey. Semin Dial. 2016;29(2):135–43 (Erratum appears in Semin Dial. 2016 Jul;29(4):326; PMID: 27384965).

    PubMed  Google Scholar 

  121. Iskander C, McQuillan R, Nesrallah G, Rabbat C, Mendelssohn DC. Attitudes and opinions of Canadian nephrologists toward continuous quality improvement options. CJKHD. 2017;4:1–8.

    Google Scholar 

  122. Gabbay E, Meyer KB. Incentives for caution: the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems Survey and experience of care. Clin J Am Soc Nephrol. 2014;9(6):1005–6.

    PubMed  PubMed Central  Google Scholar 

  123. Stivelman JC. Monitoring quality of care at dialysis facilities: a case for regulatory parsimony-and beyond. Clin J Am Soc Nephrol. 2012;7(10):1673–81.

    PubMed  Google Scholar 

  124. Brady BM, Zhao B, Niu J, Winkelmayer WC, Milstein A, Chertow GM, et al. Patient-reported experiences of dialysis care within a national pay-for-performance system. JAMA Internal Med. 2018;178(10):1358–67.

    Google Scholar 

  125. Dad T, Tighiouart H, Fenton JJ, Lacson Jr. E, Meyer KB, Miskulin DC, et al. Evaluation of non-response to the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) survey. BMC Health Serv Res. 2018;18(1):1–10.

  126. Aiyegbusi OL, Kyte D, Cockwell P, Anderson N, Calvert M. A patient-centred approach to measuring quality in kidney care: patient-reported outcome measures and patient-reported experience measures. Curr Opin Nephrol Hypertens. 2017;26(6):442–9.

    PubMed  Google Scholar 

  127. Wanchoo R, Hazzan AD, Fishbane S. Update on the end-stage renal disease quality incentive program. Semin Dial. 2016;29(2):144–7.

    PubMed  Google Scholar 

  128. Duncanson E, Bennett PN, Viecelli A, Dansie K, Handke W, Tong A, et al. Feasibility and acceptability of e-PROMs data capture and feedback among patients receiving haemodialysis in the Symptom monitoring WIth Feedback Trial (SWIFT) pilot: protocol for a qualitative study in Australia. BMJ Open. 2020;10(11):1–7.

  129. Grove BE, Ivarsen P, de Thurah A, Schougaard LM, Kyte D, Hjollund NH. Remote follow-up using patient-reported outcome measures in patients with chronic kidney disease: the PROKID study - study protocol for a non-inferiority pragmatic randomised controlled trial. BMC Health Serv Res. 2019;19(1):631.

    PubMed  PubMed Central  Google Scholar 

  130. Johnson JA, Al Sayah F, Buzinski R, Corradetti B, Davison SN, Elliott MJ, et al. A cluster randomized controlled trial for the Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY): a study protocol. BMC Health Serv Res. 2020;20(1):731.

    PubMed  PubMed Central  Google Scholar 

  131. Finkelstein FO, Cimini M, Finkelstein SH, Kliger AS. Computerized adaptive technology for the assessment of HRQOL of PD and CKD patients. Peritoneal Dial Int. 2020. https://doi.org/10.1177/0896860820959961.

  132. van Der Veer SN, Ercia A, Caskey FJ, Farrington K, Jury F, Rees M, et al. Developing an intervention to implement electronic patient-reported outcomes in renal services in the UK. Stud Health Technol Inform. 2020;270:936–40.

    Google Scholar 

  133. Kyte D, Anderson N, Auti R, Aiyegbusi OL, Bishop J, Bissell A, et al. Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease. JPRO. 2020;4(1):55.

    PubMed  PubMed Central  Google Scholar 

  134. Schick-Makaroff K, Mharapara P. Use of electronic patient-reported outcomes in the care of patients with kidney failure. Nephrol Nurs J. 2020;47(5):465–72.

    PubMed  Google Scholar 

  135. Evans J, Glazer A, Lum R, Heale E, Mackinnon M, Blake P, et al. Implementing a patient-reported outcome measure for hemodialysis patients in routine clinical care: Perspectives of patients and clinicians. Nephrol Dial Transplant. 2019;34(Suppl. 1).

  136. Aiyegbusi OL, Kyte D, Cockwell P, Marshall T, Dutton M, Walmsley-Allen N, et al. Patient and clinician perspectives on electronic patient-reported outcome measures in the management of advanced CKD: a qualitative study. Am J Kidney Dis. 2019;74(2):167–78.

    PubMed  Google Scholar 

  137. Morton RL, Lioufas N, Dansie K, Palmer SC, Jose MD, Raj R, et al. Use of patient-reported outcome measures and patient-reported experience measures in renal units in Australia and New Zealand: A cross-sectional survey study. Nephrol. 2020;25(1):14–21.

    Google Scholar 

  138. van der Willik EM, Hemmelder MH, Bart HAJ, van Ittersum FJ, Hoogendijk-van den Akker JM, Bos WJW, et al. Routinely measuring symptom burden and health-related quality of life in dialysis patients: first results from the Dutch registry of patient-reported outcome measures. Clin Kidney J. 2020;14(6):1535–44.

  139. Schick-Makaroff K, Tate K, Molzahn A. Use of electronic patient reported outcomes in clinical nephrology practice: A qualitative pilot study. Can J Kidney Health Dis. 2019. https://doi.org/10.1177/2054358119879451.

    Article  PubMed  PubMed Central  Google Scholar 

  140. Cronin RM, Conway D, Condon D, Jerome RN, Byrne DW, Harris PA. Patient and healthcare provider views on a patient-reported outcomes portal. J Am Med Inform Assoc. 2018;25(11):1470–80.

    PubMed  PubMed Central  Google Scholar 

  141. Kotronoulas G, Papadopoulou C, Simpson MF, McPhelim J, Mack L, Maguire R. Using patient-reported outcome measures to deliver enhanced supportive care to people with lung cancer: feasibility and acceptability of a nurse-led consultation model. Support Care Cancer. 2018;26(11):3729–37.

    PubMed  Google Scholar 

  142. Holmes MM, Bishop FL, Newell D, Field J, Lewith G. Chiropractors’ views on the use of patient-reported outcome measures in clinical practice: a qualitative study. Chiropr Man Therap. 2018;26:1–9.

    Google Scholar 

  143. Duman-Lubberding S, van Uden-Kraan CF, Jansen F, Witte BI, Eerenstein SEJ, van Weert S, et al. Durable usage of patient-reported outcome measures in clinical practice to monitor health-related quality of life in head and neck cancer patients. Support Care Cancer. 2017;25(12):3775–83.

    CAS  PubMed  PubMed Central  Google Scholar 

  144. Kotronoulas G, Connaghan J, Grenfell J, Gupta G, Smith L, Simpson M, et al. Employing patient-reported outcome (PRO) measures to support newly diagnosed patients with melanoma: Feasibility and acceptability of a holistic needs assessment intervention. Eur J Oncol Nurs. 2017;31:59–68.

    PubMed  Google Scholar 

  145. Dainty KN, Seaton B, Laupacis A, Schull M, Vaillancourt S. A qualitative study of emergency physicians’ perspectives on PROMS in the emergency department. BMJ Qual Saf. 2017;26(9):714.

    PubMed  PubMed Central  Google Scholar 

  146. Rotenstein LS, Orio Ill PF, Martin NE, Wagle N, Kelly A, Kalinowski B, et al. Implementing patient-reported outcome surveys as part of routine care: lessons from an academic radiation oncology department. J Am Med Inform Assoc. 2017;24(5):964–8.

    PubMed  PubMed Central  Google Scholar 

  147. Kane PM, Daveson BA, Ryan K, Ellis-Smith CI, Mahon NG, McAdam B, et al. Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure. BMJ Support Palliat Care. 2017;7(4):470–9.

    PubMed  Google Scholar 

  148. Girgis A, Durcinoska I, Levesque JV, Gerges M, Sandell T, Arnold A, et al. eHealth system for collecting and utilizing patient reported outcome measures for personalized treatment and care (PROMPT-Care) among cancer patients: mixed methods approach to evaluate feasibility and acceptability. J Med Internet Res. 2017;19(10):1–13.

    Google Scholar 

  149. Gabbard J, McLouth CJ, Brenes G, Claudel S, Ongchuan S, Burkart J, et al. Rapid electronic capturing of patient-reported outcome measures in older adults with end-stage renal disease: a feasibility study. Am J Hosp Palliat Med. 2021;38(5):432–40.

    Google Scholar 

  150. Burr SK, Fowler JC, Allen JG, Wiltgen A, Madan A. Patient-reported outcomes in practice: clinicians’ perspectives from an inpatient psychiatric setting. J Psychiatr Pract. 2017;23(5):312–9.

    PubMed  Google Scholar 

  151. Bingham CO, Noonan VK, Auger C, Feldman DE, Ahmed S, Bartlett SJ. Montreal accord on patient-reported outcomes (PROs) use series - paper 4: patient-reported outcomes can inform clinical decision making in chronic care. J Clin Epidemiol. 2017;89:136–41.

    PubMed  PubMed Central  Google Scholar 

  152. Stehlik J, Rodriguez-Correa C, Spertus JA, Biber J, Nativi-Nicolau J, Zickmund S, et al. Implementation of real-time assessment of patient-reported outcomes in a heart failure clinic: a feasibility study. J Card Fail. 2017;23(11):813–6.

    PubMed  Google Scholar 

  153. Troost JP, Gipson DS, Carlozzi NE, Reeve BB, Nachman PH, Gbadegesin R, et al. Using PROMIS (R) to create clinically meaningful profiles of nephrotic syndrome patients. Health Psychol. 2019;38(5):410–21.

    PubMed  PubMed Central  Google Scholar 

  154. Hildon Z, Allwood D, Black N. Patients’ and clinicians’ views of comparing the performance of providers of surgery: a qualitative study. Health Expect. 2015;18(3):366–78.

    PubMed  Google Scholar 

  155. Scott A, Sivey P, Ouakrim DA, Willenberg L, Naccarella L, Furler J, et al. The effect of financial incentives on the quality of health care provided by primary care physicians. Cochrane Database Syst Rev. 2011;9:CD008451.

    Google Scholar 

  156. Mendelson A, Kondo K, Damberg C, Low A, Motuapuaka M, Freeman M, et al. The effects of pay-for-performance programs on health, health care use, and processes of care. Ann Intern Med. 2017;166(5):341–53.

    PubMed  Google Scholar 

  157. Dunt D, Prang K-H, Sabanovic H, Kelaher M. The impact of public performance reporting on market share, mortality, and patient mix outcomes associated with coronary artery bypass grafts and percutaneous coronary interventions (2000–2016): a systematic review and meta-analysis. Med Care. 2018;56(11):956–66.

    PubMed  PubMed Central  Google Scholar 

  158. Marshall M, McLoughlin V. How do patients use information on health providers? Br Med J. 2010;341:c5272.

    Google Scholar 

  159. de Cruppe W, Geraedts M. Hospital choice in Germany from the patient’s perspective: a cross-sectional study. BMC Health Serv Res. 2017;17:720.

    PubMed  PubMed Central  Google Scholar 

  160. Faber M, Bosch M, Wollersheim H, Leatherman S, Grol R. Public reporting in health care: how do consumers use quality-of-care information? A systematic review. Med Care. 2009;47(1):1–8.

    PubMed  Google Scholar 

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Acknowledgements

The team acknowledges Joanne Czupryn’s contributions to the project for supporting data screening and extraction, and all patient partners on the patient advisory committee (including seven people on dialysis, four family caregivers of people on dialysis, and three kidney transplant recipients) for their insightful guidance and feedback throughout the duration of the project.

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Authors and Affiliations

  1. Faculty of Nursing, University of Alberta, Third Floor, Edmonton Clinica Health Academy, Edmonton, AB, Canada

    Kara Schick-Makaroff, Adrienne Levay & Rachel Flynn

  2. Division of Nephrology, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada

    Stephanie Thompson & Scott Klarenbach

  3. School of Nursing, Trinity Western University, Langley, BC, Canada

    Richard Sawatzky

  4. Centre for Health Evaluation & Outcome Sciences, St. Paul’s Hospital, Vancouver, Canada

    Richard Sawatzky

  5. Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden

    Richard Sawatzky

  6. Faculty of Nursing Science, Assumption University of Thailand, Bangkok, Thailand

    Onouma Thummapol

  7. Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, AB, Canada

    Mehri Karimi-Dehkordi

  8. Sociology and Social Policy, University of Leeds, Leeds, UK

    Joanne Greenhalgh

Authors
  1. Kara Schick-Makaroff
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  2. Adrienne Levay
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  4. Rachel Flynn
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Correspondence to Kara Schick-Makaroff.

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Funding

This work was funded by the Kidney Foundation of Canada, Allied Health Research Grant, KFOC 160024. The views expressed in this paper are those of the authors and not necessarily those of the Kidney Foundation of Canada. KSM was a New Investigator funded by Can-SOLVE CKD–KRESCENT (Canadians Seeking Solutions & Innovations to Overcome Chronic Kidney Disease; Kidney Research Scientist Core Education & National Training Program) from 2016 to 2019. This research was undertaken, in part, thanks to funding from the Canada Research Chairs (CRC) Program supporting Dr. Sawatzky’s CRC in Person-Centred Outcomes.

Conflicts of interest

ST, RF, RS, OT, SK, MKD, and JG have no conflicts of interest that are directly relevant to the content of this article. KSM declares that this research was undertaken, in part, thanks to her New Investigator funding from by Can-SOLVE CKD – KRESCENT (Canadians Seeking Solutions & Innovations to Overcome Chronic Kidney Disease; Kidney Research Scientist Core Education & National Training Program) from 2016-2019. AL was employed as a research coordinator for this project.

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Availability of data and material

Data sharing is not applicable to this study as no datasets were generated or analyzed during this current study. However, the search strategy with which our literature was found is available in a Google Drive repository: https://goo.gl/ipi95o. Additional data on articles analyzed are provided in the electronic supplementary materials.

Author contributions

KSM designed and led the study. ST, SK, RS, and JG substantially contributed to the design of the study. KSM and AL co-led the drafting and revision of the manuscript. AL, RF, MKD, ST, OT, and KSM collaboratively enacted the data extraction, analysis, and synthesis outlined in the Methods section. All authors helped write and revise the manuscript for intellectual content, and all read and approved the final manuscript.

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Schick-Makaroff, K., Levay, A., Thompson, S. et al. An Evidence-Based Theory About PRO Use in Kidney Care: A Realist Synthesis. Patient 15, 21–38 (2022). https://doi.org/10.1007/s40271-021-00530-2

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