Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-response

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 o...

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Main Authors: Andrea L Pusic, Jason B Liu, Chengbo Zeng, Neil E Martin, Maria O Edelen
Format: Article
Language:English
Published: BMJ Publishing Group 2024-12-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/14/12/e097127.full
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author Andrea L Pusic
Jason B Liu
Chengbo Zeng
Neil E Martin
Maria O Edelen
author_facet Andrea L Pusic
Jason B Liu
Chengbo Zeng
Neil E Martin
Maria O Edelen
author_sort Andrea L Pusic
collection DOAJ
description 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.
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spelling doaj-art-7d3c5c9bb93a4c55b4e2cfbc03d0cb992024-12-17T21:30:09ZengBMJ Publishing GroupBMJ Open2044-60552024-12-01141210.1136/bmjopen-2024-097127Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-responseAndrea L Pusic0Jason B Liu1Chengbo Zeng2Neil E Martin3Maria O Edelen4Patient Reported Outcomes, Value and Experience (PROVE) Center, Department of Surgery, Brigham and Women`s Hospital, Boston, Massachusetts, USAPatient Reported Outcomes, Value and Experience (PROVE) Center, Department of Surgery, Brigham and Women`s Hospital, Boston, Massachusetts, USAPatient Reported Outcomes, Value and Experience (PROVE) Center, Department of Surgery, Brigham and Women`s Hospital, Boston, Massachusetts, USAHarvard Medical School, Boston, Massachusetts, USAPatient Reported Outcomes, Value and Experience (PROVE) Center, Department of Surgery, Brigham and Women`s Hospital, Boston, Massachusetts, USAIntroduction 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.https://bmjopen.bmj.com/content/14/12/e097127.full
spellingShingle Andrea L Pusic
Jason B Liu
Chengbo Zeng
Neil E Martin
Maria O Edelen
Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-response
BMJ Open
title Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-response
title_full Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-response
title_fullStr Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-response
title_full_unstemmed Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-response
title_short Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-response
title_sort enhancing representativeness of patient reported outcomes in routine radiation oncology care a quality improvement protocol to address non response
url https://bmjopen.bmj.com/content/14/12/e097127.full
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