Skip to main content

Advertisement

SpringerLink
Log in

Patient-reported outcomes and patient-reported outcome measures in liver transplantation: a scoping review

  • Review
  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Introduction

Generic or condition-specific Patient-reported Outcome Measures (PROMs) are used to measure physical, mental, and social aspects of health to promote patient-centered care. This scoping review aims to identify and summarize generic and condition-specific PRO domains and PROMs that have been assessed and used in liver transplant (LT) candidates and recipients.

Methods

We searched Medline, Embase, Cochrane Database of Systematic Reviews and Register of Trials, PsychInfo, and CINAHL from inception to 08/26/2020. Included studies addressed a PRO or PROM in LT candidates or recipients.

Results

After screening, 341 studies yielded 189 unique PRO domains. Mental health domains (depression, anxiety, and guilt) were most frequently assessed, followed by domains of physical and social health. Fifty-one generic and three condition-specific unique PROMs were identified, with only 13% (n = 45) of studies including condition-specific tools.

Discussion

The most frequent PROMs were the SF-36, Nottingham Health Profile, Hospital Anxiety and Depression Scale, followed by the Liver Disease Quality of Life (LDQoL). Very few studies used transplant-specific PROMs, which may partly be related to the scarcity of LT-specific instruments. We will use these results in future qualitative research to identify PROs and PROMs to build an electronic PROM toolkit to facilitate patient-centered LT care.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

Data availability

The data underlying this article, including deidentifed participant data and a data dictionary, can be shared upon request to the corresponding author.

Abbreviations

BADI:

Beck anxiety and depression inventory

CENTRAL:

Cochrane central register of controlled trials

CINAHL:

Cumulative index to nursing and allied health literature

CLDQ:

Chronic liver disease questionnaire

ePROM:

Electronic patient-reported outcome measures

FDA:

Food and drug administration

HADS:

Hospital anxiety and depression scale

HRQoL:

Health-related quality of life

LDQoL:

Liver disease quality of life questionnaire

LT:

Liver transplant

NHP:

Nottingham health profile

pLTQ:

Post-liver transplant quality of life

PRO:

Patient-reported outcomes

PROM:

Patient-reported outcome measures

PROMIS:

Patient-reported outcomes measurement information system

PROMIS CAT:

Patient-reported outcomes measurement information system computer adaptive testing

PSQI:

Pittsburgh sleep quality index

SF-36:

36-Item short-form health survey

WHQOL:

World health organization quality of life

References

  1. Aaronson, N., Alonso, J., Burnam, A., Lohr, K. N., Patrick, D. L., Perrin, E., & Stein, R. E. (2002). Assessing health status and quality-of-life instruments: attributes and review criteria. Quality of Life Research, 11(3), 193–205.

    PubMed  Google Scholar 

  2. Mucsi, I. (2008). Health-related quality of life in chronic kidney disease patients. Primary Psychiatry., 15(1), 46–51.

    Google Scholar 

  3. Juenger, J. (2002). Health related quality of life in patients with congestive heart failure: Comparison with other chronic diseases and relation to functional variables. Heart, 87(3), 235–241.

    CAS  PubMed  PubMed Central  Google Scholar 

  4. Kalantar-Zadeh, K., & Unruh, M. (2005). Health Related Quality of Life in Patients with Chronic Kidney Disease. International Urology and Nephrology, 37(2), 367–378.

    PubMed  Google Scholar 

  5. Orr, J. G., Homer, T., Ternent, L., Newton, J., McNeil, C. J., Hudson, M., & Jones, D. E. J. (2014). Health related quality of life in people with advanced chronic liver disease. Journal of Hepatology, 61(5), 1158–1165.

    PubMed  Google Scholar 

  6. Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., Ader, D., Fries, J. F., Bruce, B., & Rose, M. (2007). The patient-reported outcomes measurement information system (PROMIS): Progress of an NIH roadmap cooperative group during its first two years. Medical Care, 45(5 Suppl 1), S3–S11.

    PubMed  PubMed Central  Google Scholar 

  7. Riley, W. T., Rothrock, N., Bruce, B., Christodolou, C., Cook, K., Hahn, E. A., & Cella, D. (2010). Patient-reported outcomes measurement information system (PROMIS) domain names and definitions revisions: further evaluation of content validity in IRT-derived item banks. Quality of Life Research, 19(9), 1311–1321.

    PubMed  PubMed Central  Google Scholar 

  8. Shahabeddin Parizi, A., Krabbe, P. F. M., Buskens, E., Bakker, S. J. L., & Vermeulen, K. M. (2019). A scoping review of key health items in self-report instruments used among solid organ transplant recipients. Patient, 2(12), 171–181.

    Google Scholar 

  9. Kensinger, C. D. F. I., & O’Dell, H. W. (2016). Patient-reported outcomes in liver transplant recipients with hepatocellular carcinoma. Clinical Transplantation, 9(30), 1036–1045.

    Google Scholar 

  10. Tang, E., Bansal, A., Novák, M., & Mucsi, I. (2017). Patient-reported outcomes in patients with chronic kidney disease and kidney transplant-Part 1. Frontiers in Medicine (Lausanne), 4, 254.

    Google Scholar 

  11. Anugwom, C. M., Parekh, J. R., Hwang, C., MacConmara, M., Lee, W. M., & Leventhal, T. M. (2020). Comparison of clinical outcomes of induction regimens in patients undergoing liver transplantation for acute liver failure. Liver Transplantaion, 27(1), 27–33.

    Google Scholar 

  12. Pelgur, H., Atak, N., & Kose, K. (2009). Anxiety and depression levels of patients undergoing liver transplantation and their need for training. Transplantation Proceedings, 41, 1743–1748.

    CAS  PubMed  Google Scholar 

  13. Miller, L. R., Paulson, D., Eshelman, A., Bugenski, M., Brown, K. A., Moonka, D., & Abouljoud, M. (2013). Mental health affects the quality of life and recovery after liver transplantation. Liver Transplantation, 19, 1272–1278.

    PubMed  Google Scholar 

  14. Drent, G., De Geest, S., Dobbels, F., Kleibeuker, J. H., & Haagsma, E. B. (2009). Symptom experience, nonadherence and quality of life in adult liver transplant recipients. The Netherlands Journal of Medicine, 67(5), 161–168.

    CAS  PubMed  Google Scholar 

  15. Bababekov, Y. J., Hung, Y. C., Chang, D. C., Rickert, C. G., Adler, J. T., Bethea, E., Pomfret, E. A., Pomposelli, J. J., & Yeh, H. (2020). Do social determinants define “Too Sick” to transplant in patients with end-stage liver disease? Transplantation, 104(2), 280–284.

    PubMed  Google Scholar 

  16. Dew, M. A., Butt, Z., Humar, A., & DiMartini, A. F. (2017). Long-Term Medical and Psychosocial Outcomes in Living Liver Donors. American Journal of Transplantation, 17(4), 880–892.

    CAS  PubMed  Google Scholar 

  17. DiMartini, A., Dew, M. A., Liu, Q., Simpson, M. A., Ladner, D. P., Smith, A. R., Zee, J., Abbey, S., Gillespie, B. W., Weinrieb, R., & Mandell, M. S. (2017). Social and Financial outcomes of living liver donation: A prospective investigation within the adult-to-adult living donor liver transplantation cohort study 2 (A2ALL-2). American Journal of Transplantation, 17(4), 1081–1096.

    CAS  PubMed  Google Scholar 

  18. Goetzmann, L., Klaghofer, R., Wagner-Huber, R., Halter, J., Boehler, A., Muellhaupt, B., Schanz, U., & Buddeberg, C. (2007). Psychosocial vulnerability predicts psychosocial outcome after an organ transplant: Results of a prospective study with lung, liver, and bone-marrow patients. Journal of Psychosomatic Research, 62(1), 93–100.

    PubMed  Google Scholar 

  19. Grover, S., & Sarkar, S. (2012). Liver transplant—psychiatric and psychosocial aspects. Journal of Clinical and Experimental Hepatology, 2(4), 382–392.

    PubMed  PubMed Central  Google Scholar 

  20. Mohamed, S., Sabki, Z. A., & Zainal, N. Z. (2014). Depression and psychosocial correlates of liver transplant candidates: A systematic review. Asia-Pacific Psychiatry, 6(4), 447–453.

    PubMed  Google Scholar 

  21. Fredrik Åberg, M. G., Karlsen, T. H., Ericzon, B.-G., Foss, A., Rasmussen, A., Bennet, W., Olausson, M., Line, P.-D., Nordin, A., & Bergquist, A. (2014). Differences in long-term survival among liver transplant recipients and the general population: A population-based nordic study. Hepatology, 61(2), 668–677.

    Google Scholar 

  22. Basch, E. (2017). Patient-reported outcomes—harnessing patients’ voices to improve clinical care. New England Journal of Medicine, 376, 105–108.

    PubMed  Google Scholar 

  23. Basch, E. J. X., & Heller, G. (2009). Adverse symptom event reporting by patients vs clinicians: Relationships with clinical outcomes. Journal of the National Cancer Institute, 101, 1624–1632.

    PubMed  PubMed Central  Google Scholar 

  24. Rodrigue, J. N. D., Hanto, D., Reed, A., & Curry, M. (2013). Patient-reported immunosuppression nonadherence 6 to 24 months after liver transplant: Association with pretransplant psychosocial factors and perceptions of health status change. Progress in Transplantation, 23, 319–328.

    PubMed  Google Scholar 

  25. Barber, K., Blackwell, J., Collett, D., Neuberger, J., UK Transplant Liver Advisory Group. (2007). Life expectancy of adult liver allograft recipients in the UK. Gut, 56, 279–282.

    CAS  PubMed  Google Scholar 

  26. Isa, F., Turner, G. M., Kaur, G., Kyte, D., Slade, A., Pankhurst, T., Kerecuk, L., Keeley, T., Ferguson, J., & Calvert, M. (2018). Patient-reported outcome measures used in patients with primary sclerosing cholangitis: A systematic review. Health and Quality of Life Outcomes. https://doi.org/10.1186/s12955-018-0951-6

    Article  PubMed  PubMed Central  Google Scholar 

  27. Prita Daliya, E. H. G., Lobo, D. N., & Parsons, S. L. (2019). A systematic review of patient reported outcome measures (PROMs) and quality of life reporting in patients undergoing laparoscopic cholecystectomy. HepatoBiliary Surgery and Nutrition., 8(3), 228–245.

    PubMed  PubMed Central  Google Scholar 

  28. Laith Alrubaiy, H. A. H., & Williams, J. G. (2014). Assessing patient reported outcome measures: A practical guide for gastroenterologists. United European Gastroenterology Journal, 6(2), 463–470.

    Google Scholar 

  29. Younossi, Z. M. G. G., & Kiwi, M. (1995). Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver disease. Gut, 45, 295–300.

    Google Scholar 

  30. Tapper, E. B., Kanwal, F., Asrani, S. K., Ho, C., Ovchinsky, N., Poterucha, J., Flores, A., Smith, J. E., Ankoma-Sey, V., Luxon, B., & Volk, M. L. (2018). Patient-reported outcomes in cirrhosis: A scoping review of the literature. Hepatology, 67(6), 2375–2383.

    PubMed  Google Scholar 

  31. Stine, J. G., Stukenborg, G. J., Wang, J., Adkins, A., Niccum, B., Zimmet, A., & Argo, C. K. (2020). Liver transplant candidates have impaired quality of life across health domains as assessed by computerized testing. Annals of Hepatology, 19(1), 62–68.

    PubMed  Google Scholar 

  32. Aiyegbusi, O. L., Nair, D., Peipert, J. D., Schick-Makaroff, K., & Mucsi, I. (2021). A narrative review of current evidence supporting the implementation of electronic patient-reported outcome measures in the management of chronic diseases. Therapeutic advances in chronic disease, 12, 20406223211015960.

    PubMed  PubMed Central  Google Scholar 

  33. Holzner, B., Giesinger, J. M., Pinggera, J., Zugal, S., Schöpf, F., Oberguggenberger, A. S., Gamper, E. M., Zabernigg, A., Weber, B., & Rumpold, G. (2012). The Computer-based Health Evaluation Software (CHES): A software for electronic patient-reported outcome monitoring. BMC Medical Informatics and Decision Making., 12, 126.

    PubMed  PubMed Central  Google Scholar 

  34. Papuga, M. O. D. C., McIntyre, A., Mitten, D., Kates, S., & Baumhauer, J. F. (2017). Large-scale clinical implementation of PROMIS computer adaptive testing with direct incorporation into the electronic medical record. Health Systems, 64, 1–12.

    Google Scholar 

  35. Aiyegbusi, O. L., Kyte, D., Cockwell, P., Marshall, T., Keeley, T., Gheorghe, A., & Calvert, M. (2016). Measurement properties of patient-reported outcome measures (PROMs) used in adult patients with chronic kidney disease: A systematic review protocol. British Medical Journal Open, 10(6), e012014.

    Google Scholar 

  36. PROM Group AM. (2010). Carolina Casañas i Comabella, Monica Hadi, Elizabeth Gibbons, Ray Fitzpatrick Nia Roberts. PROM Group Construct & Instrument Type Filters.

    Google Scholar 

  37. Cleemput, I. D. F. (2007). Measuring patient-reported outcomes in solid organ transplant recipients. PharmacoEconomics, 4(25), 269–286.

    Google Scholar 

  38. Gralnek, I. M., Hays, R. D., Kilbourne, A., Rosen, H. R., Keeffe, E. B., Artinian, L., Kim, S., Lazarovici, D., Jensen, D. M., Busuttil, R. W., & Martin, P. (2000). Development and evaluation of the Liver Disease Quality of Life instrument in persons with advanced, chronic liver disease-the LDQOL 1.0. The American journal of gastroenterology., 95, 3552–3565.

    CAS  PubMed  Google Scholar 

  39. Saab, S. N. V., & Landaverde, C. (2011). Development of a disease-specific questionnaire to measure health-related quality of life in liver transplant recipients. Liver Transplantation, 5(17), 567–579.

    Google Scholar 

  40. Bajaj, J. S., Thacker, L. R., Wade, J. B., Sanyal, A. J., Heuman, D. M., Sterling, R. K., Gibson, D. P., Stravitz, R. T., Puri, P., Fuchs, M., Luketic, V., Noble, N., White, M., Bell, D., & Revicki, D. A. (2011). PROMIS computerised adaptive tests are dynamic instruments to measure health-related quality of life in patients with cirrhosis. Alimentary Pharmacology & Therapeutics, 34(9), 1123–1132.

    CAS  Google Scholar 

  41. Brazier, J.-H.H.R., Jones, N., Ocathain, A., Thomas, K., Usherwood, T., & Westlake, L. (1992). Validating the SF-36 health survey questionnaire: New outcome measure for primary care. British Medical Journal, 305, 60–64.

    Google Scholar 

  42. Hunt, S. M., McKenna, S. P., McEwen, J., Williams, J., & Papp, E. (1981). The Nottingham health profile: Subjective health status and medical consultations. Social Science & Medicine., 15(3), 221–229.

    CAS  Google Scholar 

  43. O’Carroll, R. E. S. K., Couston, M., Cossar, J. A., & Hayes, P. C. (2000). A comparison of the WHOQOL-100 and the WHOQOL-BREF in detecting change in quality of life following liver transplantation. Quality of Life Research, 9(1), 121–124.

    CAS  PubMed  Google Scholar 

  44. Herdman, M., Gudex, C., Lloyd, A., Janssen, M. F., Kind, P., Parkin, D., Bonsel, G., & Badia, X. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research, 20(10), 1727–1736.

    CAS  PubMed  PubMed Central  Google Scholar 

  45. Zigmond, A. S. S. R. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scand., 67, 361–370.

    CAS  Google Scholar 

  46. Beck, A. T., Epstein, N., Brown, G., & Steer, R. A. (1988). An inventory for measuring clinical anxiety: Psychometric properties. Journal of Consulting and Clinical Psychology., 56(6), 893–897.

    CAS  PubMed  Google Scholar 

  47. Buysse, D. J. R. C., Monk, T. H., Berman, S. R., & Kupfer, D. J. (1989). The Pittsburgh Sleep Quality Index: A new instrument for psychiatric practice and research. Psychiatry Research, 28, 193–213.

    CAS  PubMed  Google Scholar 

  48. Tong, A., Gill, J., Budde, K., Marson, L., Reese, P. P., Rosenbloom, D., Rostaing, L., Wong, G., Josephson, M. A., Pruett, T. L., Warrens, A. N., Craig, J. C., Sautenet, B., Evangelidis, N., Ralph, A. F., Hanson, C. S., Shen, J. I., Howard, K., Meyer, K., … Ro, C. (2017). Toward establishing core outcome domains for trials in kidney transplantation: Report of the standardized outcomes in nephrology—Kidney Transplantation (SONG-Tx) Consensus workshops. Transplantation, 101(8), 1887–1896.

    PubMed  PubMed Central  Google Scholar 

  49. Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., Amtmann, D., Bode, R., Buysse, D., Choi, S., Cook, K., DeVellis, R., DeWalt, D., Fries, J. F., Gershon, R., Hahn, E. A., Lai, J.-S., Pilkonis, P., Revicki, D., … Hays, R. (2010). The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194.

    PubMed  PubMed Central  Google Scholar 

  50. Gershon, R., Rothrock, N. E., Hanrahan, R. T., Jansky, L. J., Harniss, M., & Riley, W. (2010). The development of a clinical outcomes survey research application: Assessment Center. Quality of Life Research, 19(5), 677–685.

    PubMed  PubMed Central  Google Scholar 

  51. Bajaj, J. S., White, M. B., Unser, A. B., Ganapathy, D., Fagan, A., Gavis, E. A., Sterling, R. K., Heuman, D. M., Matherly, S., Puri, P., Sanyal, A. J., Luketic, V., Fuchs, M., Siddiqui, M. S., Todd Stravitz, R., John, B., Thacker, L. R., & Wade, J. B. (2016). Cirrhotic patients have good insight into their daily functional impairment despite prior hepatic encephalopathy: Comparison with PROMIS norms. Metabolic Brain Disease, 31(5), 1199–1203.

    PubMed  PubMed Central  Google Scholar 

  52. Younossi, Z. H. L. (2015). Overall health-related quality of life in patients with end-stage liver disease. Clinical Liver Disease, 6(1), 9–14.

    PubMed  PubMed Central  Google Scholar 

  53. Sabatino, M. J., Gans, C. V., Zynda, A. J., Chung, J. S., Miller, S. M., Wilson, P. L., Jo, C. H., & Ellis, H. B. (2019). An electronic patient-reported outcomes measurement system in paediatric orthopaedics. J Child Ortho, 4(13), 1–15.

    Google Scholar 

  54. Kyte, D., Bishop, J., Brettell, E., Calvert, M., Cockwell, P., Dutton, M., Eddington, H., Hadley, G., Ives, N. J., Jackson, L. J., Stringer, S., & Valente, M. (2018). Use of an electronic patient-reported outcome measure in the management of patients with advanced chronic kidney disease: The RePROM pilot trial protocol. British Medical Journal Open. https://doi.org/10.1136/bmjopen-2018-026080

    Article  Google Scholar 

  55. Patricia Holch, K. A., Brooke, C., & Wang, X. (2020). Advances in patient reported outcomes: Integration and innovation. Journal of Patient Reported Outcomes. https://doi.org/10.1186/s41687-020-00193-x

    Article  Google Scholar 

  56. Jensen, R. E. S. C., & Abernethy, A. P. (2014). Review of electronic patient-reported outcomes systems used in cancer clinical care. Journal of Oncology Practice/American Society of Clinical Oncology, 10, e215–e222.

    Google Scholar 

Download references

Funding

None.

Author information

Author notes

  1. Istvan Mucsi

    Present address: Multi-Organ Transplant Unit, Toronto General Hospital, University Health Network, PMB 11C-188, 585 University Avenue, Toronto, ON, M5G 2N2, Canada

Authors and Affiliations

  1. Multi-Organ Transplant Program, University Health Network and University of Toronto, Toronto, ON, Canada

    Ali Vedadi, Roula Khairalla, Adrian Che, Ahsas Nagee, Mohammed Saqib, Ali Ayub, Aghna Wasim, Sara Macanovic, Nazia Selzner-Malekkiani & Istvan Mucsi

  2. Library and Information Services, University Health Network, Toronto, ON, Canada

    Ani Orchanian-Cheff

  3. Department of Medicine, McGill University, Montreal, QC, Canada

    Susan Bartlett

  4. Centre for Outcomes Research and Evaluation, McGill University Health Centre, Montreal, QC, Canada

    Susan Bartlett

Authors
  1. Ali Vedadi
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Roula Khairalla
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Adrian Che
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Ahsas Nagee
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Mohammed Saqib
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Ali Ayub
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Aghna Wasim
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Sara Macanovic
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Ani Orchanian-Cheff
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Nazia Selzner-Malekkiani
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Susan Bartlett
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Istvan Mucsi
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

IM, AV, SB, NS-M, and AO-C participated in study design. AV, RK, AC, AN, MS, AA, AW, AO-C, and SM participated in data abstraction and analysis. AV, IM, SB, and NS-M contributed to the interpretation of the data. IM, AV, SB, and NS-M contributed to the writing of the paper. All authors participated in drafting and finalizing the article.

Corresponding author

Correspondence to Istvan Mucsi.

Ethics declarations

Conflict of interest

The authors of this manuscript have no conflicts of interest to disclose.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 27 KB)

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Vedadi, A., Khairalla, R., Che, A. et al. Patient-reported outcomes and patient-reported outcome measures in liver transplantation: a scoping review. Qual Life Res 32, 2435–2445 (2023). https://doi.org/10.1007/s11136-023-03405-1

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-023-03405-1

Keywords

Search

Navigation