Adult cancer survivors' experiences of healthcare interactions and unmet needs in healthcare services: a systematic review

Abstract

Background: The cancer survival rate has shown consistent improvement over recent years. This has resulted in an increased focus on the health care needs of cancer survivors. These needs vary as a function of the disease and the time since diagnosis. Objectives: The aim of this systematic review was to synthesise the best available evidence of the experiences of disease free adult cancer survivors' interacting with health care practitioners and the healthcare system and the unmet needs they identify in the provision of services. Methods A three-step search strategy was utilised in this review to find published and unpublished studies. An initial limited search of PubMed and CINAHL was undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe articles. A second search using all identified keywords and index terms was then undertaken across all included databases. Thirdly, the reference list of all identified reports and articles was searched for additional studies. Studies published in English from 2003 to 2013 were considered for inclusion in this review. The databases searched included: CINAHL, PubMed, Embase, ProQuest Dissertations & Theses A & I and MedNar. Papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardised critical appraisal instrument from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). Results A total of 3986 articles were identified from the initial search strategy. A further five articles were identified from a review of the reference lists of included articles resulting in a total of 3991 identified articles. After removal of 913 duplicate articles, the titles and abstracts of 3078 records were reviewed and 2924 were excluded. One hundred and fifty four articles were retrieved for full-text review and 138 were excluded. The remaining 16 articles were assessed for methodological quality. A further six articles were excluded on methodological grounds resulting in 10 articles being included in the review. Overall, the methodological quality of the included papers was good will all studies achieving a methodological rating of at least 6/10. From these articles, 137 findings were extracted and aggregated to form 23 categories. Five synthesised findings were derived: 1) Cancer survivors require comprehensive co-ordination of care and deficits in this care may provoke anxiety and result in a heightened fear of recurrence. 2) Cancer survivors’ communication with their health practitioners may be affected by practitioner and system characteristics, which can affect their physical and psychological needs being addressed. 3) Cancer survivors may feel isolated if there is inadequate psychological and social support including preparation for the transition at the end of treatment. 4) Cancer survivors may experience increased distress if they are not provided with adequate information in a timely manner for themselves, their family and partners about issues such as the late effects of treatment. 5) Cancer survivors require information and health practitioner assistance in a number of areas such as physical treatment, body image, and wellness / lifestyle change needs and if this is not provided, adjusting to their health issues may be more challenging. Conclusions Patient-centred care consisting of both individual and system issues must be placed at the cornerstone of the delivery of healthcare services to cancer survivors. Through this, adequate care co-ordination may be achieved with appropriate support being available at the transition point at the end of active treatment. The fear of recurrence may be impacting at multiple levels of the survivorship experience and reflects the often unmet need for psychological assistance. There is a need for health professionals to be mindful of not only the physical impact of cancer but the impact on psychological and broader lifestyle areas, with adequate provision of information and access to appropriate treatment services.