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

被引：1

作者：

Lefkovits, Yael R. ^{[1
,2
,3
]}

Heriot, Natalie ^{[2
]}

Sporik, Alice ^{[2
]}

Perera, Sharnel ^{[2
]}

Friedlander, Michael ^{[4
]}

Dixon, Cyril ^{[5
]}

Cohen, Paul A. ^{[6
,7
,8
]}

Lee, Yeh Chen ^{[9
,10
,11
]}

Hyde, Simon ^{[12
]}

Richardson, Gary ^{[13
]}

Webb, Penelope ^{[14
]}

Rome, Robert ^{[15
]}

King, Madeleine ^{[16
]}

Zalcberg, John ^{[2
]}

Schofield, Penelope ^{[3
,17
,18
,19
]}

机构：

[1] Royal Melbourne Hosp, Melbourne, Vic, Australia

[2] Monash Univ, Fac Med, Sch Publ Hlth & Prevent Med, Melbourne, Australia

[3] Univ Melbourne, Sir Peter MacCallum Dept Oncol, Melbourne, Vic, Australia

[4] Univ New South Wales, Dept Med Oncol, Sydney, Australia

[5] Ovarian Canc Australia, Melbourne, Vic, Australia

[6] Univ Western Australia, Med Sch, Discipline Obstet & Gynaecol, Crawley, WA, Australia

[7] St John God Subiaco Hosp, Dept Gynaecol Oncol, Subiaco, WA, Australia

[8] Univ Notre Dame, Inst Hlth Res, Fremantle, WA, Australia

[9] Prince Wales Hosp, Med Oncol Dept, Randwick, NSW, Australia

[10] Univ New South Wales, Fac Med & Hlth, Randwick, NSW, Australia

[11] Univ Sydney, NHMRC Clin Trials Ctr, Camperdown, NSW, Australia

[12] Mercy Hosp Women, Dept Gynaecol Oncol, Heidelberg, Vic, Australia

[13] Cabrini Res, Szalmuk Family Dept Med Oncol, Malvern, Vic, Australia

[14] QIMR Berghofer Med Res Inst, Herston, Qld, Australia

[15] Epworth HealthCare, Clin Inst Obstet & Gynaecol, East Melbourne, Vic, Australia

[16] Univ Sydney, Sch Psychol, Sydney, NSW, Australia

[17] Peter MacCallum Ctr, Hlth Serv Res & Implementat Sci, Behav Sci Unit, Melbourne, Vic, Australia

[18] Swinburne Univ, Iverson Hlth Innovat Res Inst, Dept Psychol, Melbourne, Vic, Australia

[19] Swinburne Univ, Dept Behav Sci Canc, Hawthorn, Vic, Australia

来源：

BMC HEALTH SERVICES RESEARCH | 2024年 / 24卷 / 01期

关键词：

Patient reported outcome measures; Gynaecological cancer; Clinical quality registry; Ovarian cancer; Quality of life; OF-LIFE; EUROPEAN-ORGANIZATION; FUNCTIONAL ASSESSMENT; HEALTH-CARE; VALIDATION; ONCOLOGY; VALIDITY; TRIALS; NCCN; RELIABILITY;

D O I：

10.1186/s12913-024-11042-8

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

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.

引用

页数：12

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