Unmet care needs in people living with advanced cancer: a systematic review

Abstract

PURPOSE:\ud The support needs of cancer patients vary according to the phase of their cancer journey. Recent developments in healthcare are such that the advanced cancer phase is increasingly experienced as a chronic illness phase, with consequent changes in patient support needs. Understanding these needs, and identifying areas of unmet need, can enable us to develop services that are more adequate to the task of supporting this population.\ud METHODS:\ud We conducted a systematic search of four electronic databases to identify studies examining the unmet needs of people living with advanced cancer. Relevant data were extracted and synthesised; meta-analyses were conducted to obtain pooled estimates for prevalence of needs.\ud RESULTS:\ud We identified 23 studies (4 qualitative) for inclusion. Unmet needs were identified across a broad range of domains, with greatest prevalence in informational (30-55 %), psychological (18-42 %), physical (17-48 %), and functional (17-37 %) domains. There was considerable heterogeneity amongst studies in terms of methods of assessment, coding and reporting of needs, respondent characteristics, and appraised study quality.\ud CONCLUSIONS:\ud Heterogeneity made it difficult to compare across studies and inflated confidence intervals for pooled estimates of prevalence-we need standardised and comprehensive approaches to assessment and reporting of unmet needs to further our understanding. Nonetheless, the review identified prominent needs across a range of (interacting) experiential domains. Moreover, by focussing on unmet needs for support, we were able to extrapolate potential implications for service development

Patterns of unmet supportive needs and relationship to quality of life in Chinese cancer patients

“…Sexuality was the least‐common unmet need compared with the other 4 needs. This accords with previous reviews examining prevalence of unmet needs in cancer patients . A systematic review found that 7.4% of cancer population reported unmet sexuality needs, whereas 12.8% to 33.3% reported other types of unmet needs .…”

“…For example, a recent cross‐sectional study in Malaysian breast cancer patients found that the most prevalent types of unmet needs were uncertainty about future, fears about cancer spreading, and sadness . Yet such an approach focusing on prevalence of unmet needs at the group level could be misleading, making it difficult to consider individual differences on unmet needs . For example, a low‐frequency unmet need could be highly salient and clinically relevant for people who are experiencing that need …”

Living with advanced cancer and the role of the primary care provider: The missing piece in the survivorship discourse

“…A systematic review estimated the prevalence of unmet needs among advanced cancer survivors (Moghaddam et al, 2016). The authors identified 23 studies (four qualitative) and found that a substantial percentage (ranging from 17% to 48%) of advanced cancer survivors experience psychological (fear of disease progression, pain, worry about others), physical (lack of energy, pain) and functional (managing activities of daily living) as well as sexual and spiritual needs that go unmet.…”

The ENABLE study protocol: Understanding and characterising the value and role of self‐management support for people living with cancer that is treatable but not curable

“…A recent scoping review of studies on self-management strategies and SMS needs of patients with advanced cancer found that patients engaged in a variety of self-management behaviours and have an extensive need for SMS (Budhwani et al, 2019). Patient needs for SMS fell broadly within the domains of managing complex, cyclical and chronic symptoms and the impact of those symptoms on the psychosocial aspects of daily life, findings supported by two systematic reviews of the unmet needs of people living with advanced cancer (Moghaddam, Coxon, Nabarro, Hardy, & Cox, 2016;Wang et al, 2018). The importance of the role of carers in addressing the self-management needs of patients with advanced cancer has also been highlighted (Budhwani et al, 2019), with managing patients' emotions identified as a particularly challenging part of caregiving (Wang et al, 2018).…”

“…The needs of patients living with cancer that is treatable but incurable can resemble needs of patients with other chronic illness conditions (Moghaddam et al, 2016), and indeed, many may be managing other conditions in addition to cancer. The chronic condition literature reports increasing evidence that supporting people to manage their own health has positive outcomes, such as improved quality of life and reduced use of health services (de Longh, Petrea, Fenner, & Kidd, 2015).…”