Review

. 2024 Jul 8;24(1):778.

doi: 10.1186/s12913-024-11042-8.

Incorporating patient-reported outcome measures (PROMs) into a clinical quality registry (CQR) for ovarian cancer: considerations and challenges

Yael R Lefkovits^{1

2

3}, Natalie Heriot⁴, Alice Sporik⁴, Sharnel Perera⁴, Michael Friedlander⁵, Cyril Dixon⁶, Paul A Cohen^{7

8

9}, Yeh Chen Lee^{10

11

12}, Simon Hyde¹³, Gary Richardson¹⁴, Penelope Webb¹⁵, Robert Rome¹⁶, Madeleine King¹⁷, John Zalcberg⁴, Penelope Schofield^{18

19

20

21}

Affiliations

¹ Royal Melbourne Hospital, Parkville, Melbourne, Victoria, Australia. yael.lefkovits@mh.org.au.
² School of Public Health and Preventive Medicine, Faculty of Medicine, Monash University, Melbourne, Australia. yael.lefkovits@mh.org.au.
³ Sir Peter MacCallum Department of Oncology, The University of Melbourne, Parkville, Melbourne, Victoria, Australia. yael.lefkovits@mh.org.au.
⁴ School of Public Health and Preventive Medicine, Faculty of Medicine, Monash University, Melbourne, Australia.
⁵ Department of Medical Oncology, University of New South Wales, Sydney, Australia.
⁶ Ovarian Cancer Australia, Melbourne, Victoria, Australia.
⁷ Discipline of Obstetrics and Gynaecology, Medical School, University of Western Australia, Crawley, Western Australia, Australia.
⁸ Department of Gynaecological Oncology, St John of God Subiaco Hospital, Subiaco, Western Australia, Australia.
⁹ Institute of Health Research, University of Notre Dame, Fremantle, Western Australia, Australia.
¹⁰ Medical Oncology Department, Prince of Wales Hospital, Randwick, New South Wales, Australia.
¹¹ Faculty of Medicine and Health, University of New South Wales, Randwick, New South Wales, Australia.
¹² NHMRC Clinical Trials Centre, University of Sydney, Camperdown, New South Wales, Australia.
¹³ Department of Gynaecological Oncology, Mercy Hospital for Women, Heidelberg, Victoria, Australia.
¹⁴ Szalmuk Family Department of Medical Oncology, Cabrini Research, Malvern, Victoria, Australia.
¹⁵ QIMR Berghofer Medical Research Institute, Herston, Queensland, Australia.
¹⁶ Clinical Institute of Obstetrics and Gynaecology, Epworth HealthCare, East Melbourne, Victoria, Australia.
¹⁷ School of Psychology, University of Sydney, Sydney, NSW, Australia.
¹⁸ Sir Peter MacCallum Department of Oncology, The University of Melbourne, Parkville, Melbourne, Victoria, Australia.
¹⁹ Behavioural Sciences Unit, Health Services Research and Implementation Sciences, Peter MacCallum Centre, Melbourne, Victoria, Australia.
²⁰ Department of Psychology and Iverson Health Innovation Research Institute, Swinburne University, Melbourne, Victoria, Australia.
²¹ Department of Behavioural Sciences in Cancer, Swinburne University, Hawthorne, Victoria, Australia.

PMID: 38978033
PMCID: PMC11232149
DOI: 10.1186/s12913-024-11042-8

Review

Incorporating patient-reported outcome measures (PROMs) into a clinical quality registry (CQR) for ovarian cancer: considerations and challenges

Yael R Lefkovits et al. BMC Health Serv Res. 2024.

. 2024 Jul 8;24(1):778.

doi: 10.1186/s12913-024-11042-8.

Authors

Affiliations

¹ Royal Melbourne Hospital, Parkville, Melbourne, Victoria, Australia. yael.lefkovits@mh.org.au.
² School of Public Health and Preventive Medicine, Faculty of Medicine, Monash University, Melbourne, Australia. yael.lefkovits@mh.org.au.
³ Sir Peter MacCallum Department of Oncology, The University of Melbourne, Parkville, Melbourne, Victoria, Australia. yael.lefkovits@mh.org.au.
⁴ School of Public Health and Preventive Medicine, Faculty of Medicine, Monash University, Melbourne, Australia.
⁵ Department of Medical Oncology, University of New South Wales, Sydney, Australia.
⁶ Ovarian Cancer Australia, Melbourne, Victoria, Australia.
⁷ Discipline of Obstetrics and Gynaecology, Medical School, University of Western Australia, Crawley, Western Australia, Australia.
⁸ Department of Gynaecological Oncology, St John of God Subiaco Hospital, Subiaco, Western Australia, Australia.
⁹ Institute of Health Research, University of Notre Dame, Fremantle, Western Australia, Australia.
¹⁰ Medical Oncology Department, Prince of Wales Hospital, Randwick, New South Wales, Australia.
¹¹ Faculty of Medicine and Health, University of New South Wales, Randwick, New South Wales, Australia.
¹² NHMRC Clinical Trials Centre, University of Sydney, Camperdown, New South Wales, Australia.
¹³ Department of Gynaecological Oncology, Mercy Hospital for Women, Heidelberg, Victoria, Australia.
¹⁴ Szalmuk Family Department of Medical Oncology, Cabrini Research, Malvern, Victoria, Australia.
¹⁵ QIMR Berghofer Medical Research Institute, Herston, Queensland, Australia.
¹⁶ Clinical Institute of Obstetrics and Gynaecology, Epworth HealthCare, East Melbourne, Victoria, Australia.
¹⁷ School of Psychology, University of Sydney, Sydney, NSW, Australia.
¹⁸ Sir Peter MacCallum Department of Oncology, The University of Melbourne, Parkville, Melbourne, Victoria, Australia.
¹⁹ Behavioural Sciences Unit, Health Services Research and Implementation Sciences, Peter MacCallum Centre, Melbourne, Victoria, Australia.
²⁰ Department of Psychology and Iverson Health Innovation Research Institute, Swinburne University, Melbourne, Victoria, Australia.
²¹ Department of Behavioural Sciences in Cancer, Swinburne University, Hawthorne, Victoria, Australia.

PMID: 38978033
PMCID: PMC11232149
DOI: 10.1186/s12913-024-11042-8

Abstract

As medical treatment increasingly focuses on improving health-related quality of life, patient-reported outcome measures (PROMs) are an essential component of clinical research. The National Gynae-Oncology Registry (NGOR) is an Australian clinical quality registry. A suitable PROM was required for the NGOR ovarian cancer module to complement clinical outcomes and provide insights into outcomes important to patients. Our narrative review aimed to identify existing ovarian cancer-specific PROMs and ascertain which tool would be most appropriate for implementation into the NGOR ovarian cancer module.A literature review of Cochrane Library, Embase, MEDLINE and PubMed databases was performed to identify existing ovarian cancer-specific PROM tools. A steering committee was convened to (1) determine the purpose of, and criteria for our required PROM; and (2) to review the available tools against the criteria and recommend the most appropriate one for implementation within the NGOR.The literature review yielded five tools: MOST, EORTC QLQ-OV28, FACIT-O, NFOSI-18 and QOL-OVCA. All were developed and validated for use in clinical trials, but none had been validated for use in clinical quality registry. Our expert steering committee pre-determined purpose of a PROM tool for use within the NGOR was to enable cross-service comparison and benchmarking to drive quality improvements. They identified that while there was no ideal, pre-existing, ovarian cancer-specific PROM tool for implementation into the NGOR, on the basis of its psychometric properties, its available translations, its length and its ability to be adapted, the EORTC tool is most fit-for-purpose for integration into the NGOR.This process enabled identification of the tool most appropriate to provide insights into how ovarian cancer treatments impact patients' quality of life and permit benchmarking across health services.

Keywords: Clinical quality registry; Gynaecological cancer; Ovarian cancer; Patient reported outcome measures; Quality of life.

PubMed Disclaimer

Conflict of interest statement

Yael Lefkovits: Nil to declare. Natalie Heriot: Nil to declare. Alice Sporik: Nil to declare. Sharnel Perera: Nil to declare. Michael Friedlander: Nil to declare. Cyril Dixon: Nil to declare. Yeh Chen Lee: Nil to declare. Simon Hyde: Nil to declare. Gary Richardson: Nil to declare. Penelope Webb: Received grant funding from AstraZeneca for an unrelated study of ovarian cancer. Paul A Cohen: Speakers’ honoraria from Astra Zeneca. Robert Rome: Nil to declare. Madeleine King: Nil to declare. John Zalcberg: Nil to declare. Penelope Schofield: Nil to declare.

Figures

**Fig. 1**
Flow diagram of the literature review process for studies comparing ovarian cancer-specific patient reported outcome measure tools

See this image and copyright information in PMC

Cited by

Successful laparoscopic cytoreductive surgery for multiple (three) advanced recurrences of AGCT in a young woman. A case report.
Macciò A, Vallerino V, Sole G, Nemolato S, Giglio E, Madeddu C. Macciò A, et al. Int J Surg Case Rep. 2025 Feb;127:110960. doi: 10.1016/j.ijscr.2025.110960. Epub 2025 Jan 27. Int J Surg Case Rep. 2025. PMID: 39874807 Free PMC article.

References

1. Hilpert F, Du Bois A. Patient-reported outcomes in ovarian cancer: are they key factors for decision making? Expert Rev Anticancer Ther. 2018;18(sup1):3–7. doi: 10.1080/14737140.2018.1516146. - DOI - PubMed
1. Badia X, Herdman M. The importance of health-related quality-of-life data in determining the value of drug therapy. Clin Ther. 2001;23(1):168–75. doi: 10.1016/S0149-2918(01)80039-4. - DOI - PubMed
1. Mercieca-Bebber R, King MT, Calvert MJ, Stockler MR, Friedlander M. The importance of patient-reported outcomes in clinical trials and strategies for future optimization. Patient Relat Outcome Measures. 2018;9:353. doi: 10.2147/PROM.S156279. - DOI - PMC - PubMed
1. 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. doi: 10.1007/s11136-008-9396-4. - DOI - PubMed
1. Ishaque S, Jonathan Karnon G, Chen R, Nair, Amy B. Salter. A systematic review of randomised controlled trials evaluating the use of patient-reported outcome measures (PROMs) Qual Life Res. 2019;28(3):567–92. doi: 10.1007/s11136-018-2016-z. - DOI - PubMed

Publication types

Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions

LinkOut - more resources

Full Text Sources
- BioMed Central
- PubMed Central
Medical
- MedlinePlus Health Information
Research Materials
- NCI CPTC Antibody Characterization Program

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Incorporating patient-reported outcome measures (PROMs) into a clinical quality registry (CQR) for ovarian cancer: considerations and challenges

Affiliations

Incorporating patient-reported outcome measures (PROMs) into a clinical quality registry (CQR) for ovarian cancer: considerations and challenges

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

Similar articles

Cited by

References

Publication types

MeSH terms

LinkOut - more resources

Full Text Sources

Medical

Research Materials

Abstract

Conflict of interest statement

Figures

Similar articles

Cited by

References

Publication types

MeSH terms

Related information

LinkOut - more resources

Full Text Sources

Medical

Research Materials