s11764-016-0580-1.pdf (532.31 kB)
Patient-reported outcome measures of the impact of cancer on patient’s everyday lives: a systematic review
journal contribution
posted on 2023-06-21, 06:02 authored by Susan Catt, Rachel StarkingsRachel Starkings, Valerie ShillingValerie Shilling, Lesley FallowfieldLesley FallowfieldPurpose: Patients with advanced disease are living longer and commonly used patient-reported outcome measures (PROMs) may miss relevant elements of the quality of extended survival. This systematic review examines the measures used to capture aspects of the quality of survival including impact on patients’ everyday lives such as finances, work and family roles. Methods: Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO restricted to English language articles. Information on study characteristics, instruments and outcomes was systematically extracted and synthesised. A predefined set of criteria was used to rate the quality of studies. Results: From 2761 potentially relevant articles, 22 met all inclusion criteria, including 10 concerning financial distress, 3 on roles and responsibilities and 9 on multiple aspects of social well-being. Generally, studies were not of high quality; many lacked bias free participant selection, had confounding factors and had not accounted for all participants. High levels of financial distress were reported and were associated with multiple demographic factors such as age and income. There were few reports concerned with impacts on patients’ roles/responsibilities in everyday life although practical and emotional struggles with parenting were identified. Social difficulties were common and associated with multiple factors including being a caregiver. Many studies were single time-point surveys and used non-validated measures. Exceptions were employment of the COST and Social Difficulties Inventory (SDI), validated measures of financial and social distress respectively. Conclusions: Impact on some important parts of patients’ everyday lives is insufficiently and inconsistently captured. Further PROM development focussing on roles and responsibilities, including work and caring for dependents, is warranted. Implications for Cancer Survivors: Factors such as finances, employment and responsibility for caring for dependents (e.g. children and elderly relatives) can affect the well-being of cancer survivors. There is a need to ensure that any instruments used to assess patients’ social well-being are broad enough to include these areas so that any difficulties arising can be better understood and appropriately supported.
Funding
PROACT; Bristol-Myers Squibb
History
Publication status
- Published
File Version
- Published version
Journal
Journal of Cancer SurvivorshipISSN
1932-2267Publisher
SpringerExternal DOI
Issue
2Volume
11Page range
211-232Department affiliated with
- Sussex Health Outcomes Research & Education in Cancer (SHORE-C) Publications
Research groups affiliated with
- Sussex Health Outcomes Research and Education in Cancer Publications
Full text available
- Yes
Peer reviewed?
- Yes
Legacy Posted Date
2016-11-29First Open Access (FOA) Date
2016-11-29First Compliant Deposit (FCD) Date
2016-11-29Usage metrics
Categories
No categories selectedKeywords
Licence
Exports
RefWorks
BibTeX
Ref. manager
Endnote
DataCite
NLM
DC