Implementation of patient-reported outcome measures and patient-reported experience measures in melanoma clinical quality registries: a systematic review

Zachary Blood; Anh Tran; Lauren Caleo; Robyn Saw; Mbathio Dieng; Mark Shackleton; H Peter Soyer; Chris Arnold; Graham J Mann; Rachael L Morton

doi:10.1136/bmjopen-2020-040751

Implementation of patient-reported outcome measures and patient-reported experience measures in melanoma clinical quality registries: a systematic review

BMJ Open. 2021 Feb 11;11(2):e040751. doi: 10.1136/bmjopen-2020-040751.

Authors

Zachary Blood¹, Anh Tran¹, Lauren Caleo¹, Robyn Saw², Mbathio Dieng¹, Mark Shackleton³, H Peter Soyer⁴, Chris Arnold^{5

6}, Graham J Mann^{7

8}, Rachael L Morton⁹

Affiliations

¹ NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
² Melanoma Institute Australia, North Sydney, New South Wales, Australia.
³ Department of Medicine, Monash University, Clayton, Victoria, Australia.
⁴ The University of Queensland Diamantina Institute, Dermatology Research Centre, The University of Queensland, Saint Lucia, Queensland, Australia.
⁵ Skin Health Institute, Melbourne, Victoria, Australia.
⁶ BioGrid Australia, Parkville, Victoria, Australia.
⁷ Western Clinical School, Westmead Millennium Institute, The University of Sydney, Sydney, New South Wales, Australia.
⁸ John Curtin School of Medical Research, Australian National University, Canberra, Australian Capital Territory, Australia.
⁹ NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia Rachael.morton@ctc.usyd.edu.au.

Abstract

Objectives: To identify patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in clinical quality registries, for people with cutaneous melanoma, to inform a new Australian Melanoma Clinical Outcomes Registry; and describe opportunities and challenges of routine PROM/PREM collection, especially in primary care.

Design: Systematic review.

Primary and secondary outcome measures: Which PROMs and PREMs are used in clinical quality registries for people with cutaneous melanoma, how they are collected, frequency of collection, participant recruitment methods and funding models for each registry.

Results: 1134 studies were identified from MEDLINE, PreMEDLINE, Embase, PsychInfo, Cochrane Database of Abstracts of Reviews of Effects databases and TUFTS Cost-Effectiveness Analysis Registry, alongside grey literature, from database inception to 5th February 2020. Following screening, 14 studies were included, identifying four relevant registries: Dutch Melanoma Registry, Adelphi Real-World Disease-Specific Programme (Melanoma), Patient-Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship Registry, and Cancer Experience Registry. These used seven PROMs: EuroQol-5 Dimensions, Functional Assessment of Cancer-General (FACT-G) and FACT-Melanoma (FACT-M), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Cancer 30 (EORTC QLQ-C30), Fatigue Assessment Scale Hospital Anxiety and Depression Scale, Patient-Reported Outcome Measures Information System-29 and one PREM; EORTC QLQ-Information Module 26. PROMs/PREMs in registries were reported to improve transparency of care; facilitate clinical auditing for quality assessment; enable cost-effectiveness analyses and create large-scale research platforms. Challenges included resource burden for data entry and potential collection bias toward younger, more affluent respondents. Feedback from patients with melanoma highlighted the relevance of PROMs/PREMs in assessing patient outcomes and patient experiences.

Conclusions: Clinical registries indicate PROMs/PREMs for melanoma care can be incorporated and address important gaps, however cost and collection bias may limit generalisability.

Prospero registration number: CRD42018086737.

Keywords: clinical audit; dermatological tumours; public health.

Publication types

Research Support, Non-U.S. Gov't
Systematic Review

MeSH terms

Australia
Humans
Melanoma* / therapy
Patient Reported Outcome Measures
Quality of Life
Registries
Skin Neoplasms* / therapy