PurposeThe aim of this study was to explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers.MethodsIn-depth qualitative interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected.ResultsTwenty-four patient-caregiver dyads with advanced ovarian (9), melanoma (9) or lung cancer (6). Patients were aged 39–84 (median 62 years) and caregivers 19–85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other.ConclusionsBoth patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other.Implications for Cancer SurvivorsUncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward; however, patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and healthcare professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues.Electronic supplementary materialThe online version of this article (doi:10.1007/s11764-017-0628-x) contains supplementary material, which is available to authorized users.
PurposePatients 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.MethodsSearches 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.ResultsFrom 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.ConclusionsImpact 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 SurvivorsFactors such as finances, employment and responsibility for caring for dependants (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.
PurposeThe Patient Roles and Responsibilities Scale (PRRS) was developed to enable a broader evaluation of the impact of cancer and cancer treatment, measuring ‘real world’ roles and responsibilities such as caring for others and financial and employment responsibilities. Here, we report the development and initial validation.MethodsThe 29-item PRRS was developed from the thematic analysis of two interview studies with cancer patients and caregivers. In the evaluation study, participants completed the PRRS alongside the Social Difficulties Inventory (SDI), the main criterion measure for concurrent validity, and the Functional Assessment of Cancer Therapy - General and WHO Quality of Life-BREF (WHOQOL-BREF) for additional convergent validity data. Questionnaires were completed at baseline, 7-days (PRRS only) and 2 months. Demographic data and patient characteristics were collected at baseline.ResultsOne hundred and thirty-five patients with stage III/IV breast, lung or gynaecological cancer or melanoma completed the PRRS at least once. Five items performed poorly and were removed from the scale. The final 16 core items selected comprised 3 dimensions: family well-being, responsibilities and social life, and financial well-being, identified in principal component analysis, accounting for 61.5% of total variance. Missing data (0.6%) and floor/ceiling effects were low (0%/1.5%). Cronbach’s alpha was 0.9 for the PRRS-16; 0.79–0.87 for the subscales. PRRS showed good test–retest reliability (ICC-0.86), sensitivity to change and the predicted pattern of correlation with validation measures r = |0.65–0.77|. The standalone 7-item jobs and careers subscale requires further validation.ConclusionsInitial evaluation shows that the PRRS is psychometrically robust with potential to inform the evaluation of new treatments in clinical trials and real-world studies.Electronic supplementary materialThe online version of this article (10.1007/s11136-018-1940-2) contains supplementary material, which is available to authorized users.
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