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Health services research
Protocol
Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-response
  1. Chengbo Zeng1,2,
  2. Neil E Martin2,3,4,
  3. Andrea L Pusic1,2,5,
  4. Maria O Edelen1,2,6,
  5. Jason B Liu1,2,7
  1. 1Patient Reported Outcomes, Value and Experience (PROVE) Center, Department of Surgery, Brigham and Women's Hospital, Boston, Massachusetts, USA
  2. 2Harvard Medical School, Boston, Massachusetts, USA
  3. 3Department of Radiation Oncology, Brigham and Women's Hospital, Boston, Massachusetts, USA
  4. 4Department of Radiation Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA
  5. 5Division of Plastic and Reconstructive Surgery, Department of Surgery, Brigham and Women's Hospital, Boston, Massachusetts, USA
  6. 6RAND Corporation, Boston, Massachusetts, USA
  7. 7Division of Surgical Oncology, Department of Surgery, Brigham and Women's Hospital, Boston, Massachusetts, USA
  1. Correspondence to Dr Chengbo Zeng; czeng8{at}bwh.harvard.edu

Abstract

Introduction Non-response significantly undermines the representativeness of patient-reported outcome (PRO) data, thereby compromising its utility for facilitating high-value, equitable, patient-centred care in cancer clinics. Quality improvement studies are needed to assess the representativeness of PRO data collected in routine care, identify the underlying causes of non-response and develop novel methods to ensure data representativeness. Using a multilevel framework and a mixed-methods approach, we have three aims: (1) characterise the non-response of the Global-10 across clinic, provider and patient levels; (2) identify multilevel causes of non-response and potential strategies to improve representativeness in PRO collection; and (3) develop effective modifications to missing-data methods to enhance the representativeness of pre-existing PRO data.

Methods and analysis Our primary data source is the Patient Reported Outcomes Measurement Information System Global-10, collected as part of routine care at the Radiation Oncology clinics within the Mass General Brigham (MGB) healthcare system. Other sources include (1) Harvard Catalyst for provider-specific data, (2) MGB administrative data, (3) public Centers for Medicare & Medicaid Services data and (4) the National Plan and Provider Enumeration System. We will conduct quantitative analyses to assess variations in Global-10 non-response across multilevel factors. Additionally, we will use qualitative interviews with patients and clinical professionals to understand the causes of non-response and to formulate strategies to expand the reach of PRO collection to underrepresented cancer patients, improve their completions and enhance overall data representativeness. Finally, we will integrate implementation science knowledge and findings from the first two aims into missing-data methods to manage non-response in the pre-existing Global-10 data and to evaluate their performance in preserving representativeness.

Ethics and dissemination The study protocol was reviewed and approved by the Institutional Review Board at the Dana-Farber/Harvard Cancer Center (24-225). Written informed consent will be obtained from participants. Study findings will be disseminated through peer-reviewed publications and presentations at national and international conferences.

  • Patient Reported Outcome Measures
  • Radiation oncology
  • Implementation Science
  • Surveys and Questionnaires
  • STATISTICS & RESEARCH METHODS
  • QUALITATIVE RESEARCH
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi-org.ezproxy.u-pec.fr/10.1136/bmjopen-2024-097127

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    Footnotes

    • Contributors CZ is the guarantor. CZ and JBL are the principal investigators of this project and led the study design. CZ, JBL and MOE contributed to the conception and design of the study. CZ led the writing of this protocol manuscript. JBL, MOE, ALP and NEM contributed significantly to the editing of this manuscript. All authors contributed to the editing and final approval of the protocol.

    • Funding CZ, JBL and MOE were supported by the National Cancer Institute of the National Institutes of Health under Award Number R03CA292987. The funders had no role in the conceptualization, analysis or presentation of findings of this study.

    • Competing interests Outside of the submitted work, ALP is the co-developer of the Q-Portfolio measures and receives royalties when used for commercial purposes. ALP, CZ and MOE are supported in part by the National Cancer Institute for unrelated work. All other authors have nothing to disclose.

    • Patient and public involvement Patients and/or the public were not involved in the design, conduct, reporting or dissemination plans of this research.

    • Provenance and peer review Not commissioned; peer reviewed for ethical and funding approval prior to submission.