Unmet care needs of advanced cancer patients and their informal caregivers

a systematic review

Tao Wang, Alex Molassiotis, Betty Pui Man Chung, Jing Yu Tan

Research output: Contribution to journalArticleResearchpeer-review

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Abstract

Background: This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment. 

Methods: Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes. 

Results: Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and “being informed about benefits and side-effects of treatment” (4-66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies. 

Conclusion: Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.

Original languageEnglish
Article number96
Pages (from-to)1-29
Number of pages29
JournalBMC Palliative Care
Volume17
Issue number1
DOIs
Publication statusPublished - 23 Jul 2018

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Caregivers
Neoplasms
Needs Assessment
Databases
Information Services
Palliative Care
Fatigue
Longitudinal Studies
Anxiety
Cross-Sectional Studies
Quality of Life
Psychology
Delivery of Health Care
Therapeutics
Research

Cite this

Wang, Tao ; Molassiotis, Alex ; Chung, Betty Pui Man ; Tan, Jing Yu. / Unmet care needs of advanced cancer patients and their informal caregivers : a systematic review. In: BMC Palliative Care. 2018 ; Vol. 17, No. 1. pp. 1-29.
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abstract = "Background: This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment. Methods: Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes. Results: Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4{\%}), fatigue (18-76.3{\%}), and “being informed about benefits and side-effects of treatment” (4-66.7{\%}). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100{\%}) and care-related information (21-100{\%}). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies. Conclusion: Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.",
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Unmet care needs of advanced cancer patients and their informal caregivers : a systematic review. / Wang, Tao; Molassiotis, Alex; Chung, Betty Pui Man; Tan, Jing Yu.

In: BMC Palliative Care, Vol. 17, No. 1, 96, 23.07.2018, p. 1-29.

Research output: Contribution to journalArticleResearchpeer-review

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