Assessing the social impact of cancer: a review of available tools

Muzzatti, Barbara; Annunziata, Maria Antonietta

doi:10.1007/s00520-012-1545-1

Cited by 10 publications

(10 citation statements)

References 47 publications

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“…A previous systematic review by Muzzati and Annunziata [8] showed that some PROMs examine different and limited aspects of patients’ social well-being. For example the subscale of the EORTC QLQ-C30 refers to social and role functioning, the FACT-G to relatives and relationships and the Psychological Screen for Cancer [9] to social support.…”

Section: Introductionmentioning

confidence: 99%

“…For example the subscale of the EORTC QLQ-C30 refers to social and role functioning, the FACT-G to relatives and relationships and the Psychological Screen for Cancer [9] to social support. The authors of this previous systematic review [8] commented that none of the multidimensional HRQoL instruments totally captured the complexity of ‘social impact’. This led them to a systematic search of instruments dedicated solely to the assessment of the social aspects of the cancer experience (or validated in cancer populations) which yielded 27 articles relating to 14 instruments.…”

Section: Introductionmentioning

confidence: 99%

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Patient-reported outcome measures of the impact of cancer on patients’ everyday lives: a systematic review

et al. 2016

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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.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Patient-reported outcome measures of the impact of cancer on patients’ everyday lives: a systematic review

et al. 2016

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“…In recent years, a number of cancer QOL measurements have been developed to evaluate the social component of the cancer experience; however, the items used to evaluate social problems tend to be limited, and content varies across instruments . The Social Difficulties Inventory (SDI) is 1 of the most elaborately developed standardized questionnaires that comprehensively cover the social problems experienced by cancer patients in the United Kingdom .…”

Section: Introductionmentioning

confidence: 99%

“…The Social Difficulties Inventory (SDI) is 1 of the most elaborately developed standardized questionnaires that comprehensively cover the social problems experienced by cancer patients in the United Kingdom . Nevertheless, cross‐cultural or national application of SDI may be difficult because social problems reflect factors in the social environment, such as perceptions and emotions about cancer, health‐care systems, and social welfare policies . The literature on the need for help with social problems among cancer patients is also limited.…”

Section: Introductionmentioning

confidence: 99%

“…14 In recent years, a number of cancer QOL measurements have been developed to evaluate the social component of the cancer experience; however, the items used to evaluate social problems tend to be limited, and content varies across instruments. [15][16][17] The Social Difficulties Inventory (SDI) is 1 of the most elaborately developed standardized questionnaires that comprehensively cover the social problems experienced by cancer patients in the United Kingdom. 4,[18][19][20] Nevertheless, cross-cultural or national application of SDI may be difficult because social problems reflect factors in the social environment, such as perceptions and emotions about cancer, health-care systems, and social welfare policies.…”

Section: Introductionmentioning

confidence: 99%

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An exploratory study of social problems experienced by ambulatory cancer patients in Japan: Frequency and association with perceived need for help

et al. 2018

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The association of cancer-related fatigue on the social, vocational and healthcare-related dimensions of cancer survivorship

Jones,

Howell,

Longo

et al. 2023

J Cancer Surviv

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Background Cancer-related fatigue (CRF) is well documented in cancer survivors, but little is known about the personal and societal impact of CRF. This study aimed to examine the impact of CRF in relation to social and vocational functioning and health care utilization in a large sample of post-treatment cancer survivors. Methods We conducted a cross-sectional descriptive study of early stage breast and colorectal cancer survivors (n = 454) who were within 5 years from treatment completion. Social difficulties (SDI-21), work status, absenteeism and presenteeism (WHO-HPQ) and healthcare utilization (HSUQ) were compared in those with (CFR +) and without (CRF −) clinically significant fatigue (FACT-F ≤ 34). Results A total of 32% met the cut-off criteria for CRF (≤ 34). Participants with CRF + had significantly higher scores on the SDI-21 across all domains and 55% of CRF + vs. 11% in CRF − was above the SDI cut-off (> 10) for significant social difficulties. Participants with CRF + were 2.74 times more likely to be unemployed or on leave (95% CI 1.62, 4.61, p < 0.001). In the subgroup of participants who were currently working (n = 249), those with CRF + reported working on average 27.4 fewer hours in the previous 4 weeks compared to CRF − (p = 0.05), and absolute presenteeism was on average 13% lower in the CRF + group (95% CI 8.0, 18.2, p < 0.001). Finally, individuals with CRF + reported significantly more physician (p < 0.001), other health care professional (p = 0.03) and psychosocial visits (p = 0.002) in the past month. Conclusions and implications for cancer survivors CRF is associated with substantial disruption in social and work role functioning in the early transitional phase of cancer survivorship. Better management of persistent CRF and funding for the implementation of existing guidelines and recommended evidence-based interventions are urgently needed.

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Assessing the social impact of cancer: a review of available tools

Cited by 10 publications

References 47 publications

Patient-reported outcome measures of the impact of cancer on patients’ everyday lives: a systematic review

Patient-reported outcome measures of the impact of cancer on patients’ everyday lives: a systematic review

An exploratory study of social problems experienced by ambulatory cancer patients in Japan: Frequency and association with perceived need for help

The association of cancer-related fatigue on the social, vocational and healthcare-related dimensions of cancer survivorship

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