Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review
Open accessAbstract
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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Care recipients with a mental illness or advanced or palliative disease have different needs, and in advanced disease grief and bereavement play a role.
“Care recipients with a mental illness (e.g., schizophrenia) or advanced or palliative disease were excluded as the needs of these groups differ and in the case of advanced disease grief and bereavement play a role.[21][22][23]”
From Non-pharmacological Interventions for Caregivers with Depression and Caregivers of Care Recipients with Co-morbid Depression: Systematic Review and Meta-analysis (2021) · cites this paper as [21]
The Background (page unavailable) says patients with advanced cancer commonly experience different symptoms from those with early-stage cancer, and the Results include studies of bereaved caregivers. This supports distinct needs in advanced cancer and the relevance of bereavement, but the paper does not establish the claim for mental illness or advanced diseases generally, or specifically discuss grief as a factor. (LLM, conf=0.82)
Experimental — accuracy not yet measuredThere are many unmet needs in those living with advanced cancer, including psychological, physical, and healthcare service and information domains.
“However, a 2018 systematic review of 50 studies reconfirmed earlier work (Harrison et al., 2009) showing that there are many unmet needs in those living with advanced cancer, including in domains such as “psychological, physical, and healthcare service and information” (Wang et al., 2018).”
From A mixed methods pilot and feasibility open trial of internet-delivered cognitive behaviour therapy (iCanADAPT Advanced) for people with advanced cancer with depression and/or anxiety (2021) · cites this paper as Wang et al., 2018
A recent review highlighted prevalent information needs among informal caregivers, covering illness, treatment, and care-related information.
“A recent review highlighted prevalent needs among informal caregivers, focusing on information needs covering illness, treatment, and care-related information [1].”
From Exploring the Unmet Needs of Cancer Caregivers in India: A Cross-Sectional Survey (2024) · cites this paper as [1]
Disruptions to caregivers' lives can be significant, and many suffer from a wide range of problems.
“Disruptions to caregivers’ lives can be significant, and many suffer from a wide range of problems [12–14].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [14]
In the review of Wang et al., on unmet needs in advanced cancer, several studies reported that caregivers had unmet needs in relation to illness and treatment information, which has some parallels with the present findings, although the present findings are more specific.
“In the review of Wang et al., on unmet needs in advanced cancer, the authors noted that several studies reported that caregivers had unmet needs in relation to illness and treatment information, which has some parallels with our findings, although ours are more specific [14].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [14]
Comparing the review's findings with those from past reviews suggests broad similarities between caregiving in pancreatic cancer and other cancers.
“Comparing our findings with those from past reviews suggests that there are some broad similarities between caregiving in pancreatic cancer and other cancers [14, 47].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [14]
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Symptom distress and quality of life among Black Americans with cancer and their family caregivers
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“, 2009) showing that there are many unmet needs in those living with advanced cancer, including in domains such as “psychological, physical, and healthcare service and information” (Wang et al., 2018).”
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Exploring the Unmet Needs of Cancer Caregivers in India: A Cross-Sectional Survey
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- Authors
- Wang, T., Molassiotis, A., Chung, B. P. M., & Tan, J.-Y.
- Affiliations
- Hong Kong Polytechnic University (HK)
- Corresponding author
- Molassiotis, Alex
- Venue
- BMC Palliative Care
- Published
- 2018-07-23
- Volume
- 17
- Issue
- 1
- Pages
- 96-96
- ISSN
- 1472-684X (ISSN-L)
- PMC
- PMC6057056
- OpenAlex
- W2883225827
- Cited by
- 672
- References
- 76
- Citations by year
- 2026: 66 · 2025: 101 · 2024: 114 · 2023: 125 · 2022: 99 · 2021: 93 · 2020: 51 · 2019: 21 · 2018: 2
- FWCI
- 7.58
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Palliative Care (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- PolyU Institutional Research Archive (Hong Kong Polytechnic University) (submittedVersion, cc-by)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- unmet care needs, advanced cancer, informal caregivers, palliative care, needs assessment, emotional support, fatigue, information needs, Supportive Care Needs Survey, quality of life, anxiety, somatic symptoms
- MeSH terms
- Patient Care, Humans, Neoplasms, Surveys and Questionnaires, Prevalence, Caregivers, Needs Assessment
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