Authors
- Hallett, Peter BSc, DipAppPsych, GradDipCouns, BAppSc (Physio), MPsych(WorkOrg)
- Pearson, Alan AM MSc, PhD, FCN, FAAG, FRCN, FAAN
- Stephenson, Matthew BBiotech (Hons), PhD
Abstract
Review question/objective: The aim of this review is to synthesize the best available evidence of adult cancer survivors' experiences interacting with health care practitioners and the health care system and the unmet needs they identify in the provision of services in the healthcare system.
Background: Cancer survival rates have increased from 46% of people with cancer surviving more than five years after initial diagnosis in 1982-1987 to 66% in 2006-2010.1This has resulted in a focus on survivorship issues such as prevention through promotion of health behaviors, detection surveillance, management of side effects of treatment and care co-ordination.2These issues are addressed within the context of an interaction between the healthcare practitioner and the cancer survivor.
Cancer treatments can have debilitating side effects in the acute phase including cancer related fatigue, weight gain, hair loss, nausea, diarrhea,3 psychological distress4, anxiety and depression5,6 and mild cognitive impairment.7 Some symptoms, such as fatigue,8 neuropathic pain9 and anxiety10 may persist after treatment concludes. With increasing survivorship, there are also concerns regarding the long-term effects of cancer treatments, such as radiotherapy and chemotherapy, on the body.11
Cancer survivors have poorer health relative to people without cancer even though their quality of life is comparable to people without cancer.12-14 Lifestyle factors are especially relevant as younger cancer survivors have a higher incidence of smoking and only 30 percent of cancer survivors meet the national physical activity guidelines.15 These lifestyle factors such as obesity,16 poor diet (low in fruit, vegetables and calcium and high in red meat) and inactivity17 are associated with some cancers or increased mortality.
As survival rates have increased there has been increasing focus on improving functional status and quality of life in cancer patients and how this is achieved through interactions between healthcare practitioners and cancer survivors. This has resulted in the adoption of models of care utilized with some other chronic diseases, such as rehabilitation18 and patient centered care.19 Due to the heterogeneity of cancer patients, different models of care are being developed including cancer survivorship plans, integrated models, separate survivorship clinics and consultative models.20
There has been an increase in the number of descriptive studies about unmet supportive care needs of cancer survivors in the literature, though there is a lack of intervention studies. There is also significant variability in the definition of unmet need between studies. The nature of unmet needs appears to vary over the course of the disease, with higher unmet needs in the treatment phase, and a greater number of people experiencing unmet needs in the post-treatment phase of care.21 Higher unmet needs are associated with advanced disease, poorer health and living in a rural location.21 Age may be a factor in the investigation of unmet issues in relation to survivorship as younger cancer survivors have higher unmet needs22 whereas older cancer survivors over 60 years of age have reported more non-cancer related co-morbidities23 and their symptoms of pain, weakness and reduced energy levels are more related to age-related factors than cancer-related factors.23
This systematic review is necessary to identify the unmet needs of cancer survivors through their health care interaction in this evolving area of healthcare. A preliminary search has been conducted for systematic reviews on this topic. The databases of PubMed, CINAHL, the Cochrane Library and the Joanna Briggs Institute Database of Systematic Review and Implementation Reports were searched. Previous systematic reviews have been conducted to examine the impact of specific cancer on individuals' quality of life, but no qualitative review was found that examined cancer survivors' experience of health care interactions and unmet needs.
The outcomes from this review will contribute to improved alignment between the expectations and needs of cancer survivors with the services provided to them within the health care system. The results may also contribute to the development of interventions to address the identified unmet needs.
Article Content
Inclusion criteria
Types of participants
This review will consider studies that include adult survivors (18 years and older) of solid tumors, excluding lymphoma, who are under 60 years of age at time of initial diagnosis. A cancer survivor will be defined as an individual who has concluded primary treatment and may be in remission or cured, but does not have active advanced disease/ metastatic disease or is undertaking palliative treatment.
Phenomena of interest
This review will consider studies that investigate the experience of cancer survivors, their interactions with the healthcare system and healthcare practitioners, and the unmet needs they experience in the healthcare system over the course of their survivorship. The health care system will include health care practitioners within medicine, nursing, allied health and complimentary therapies but will exclude alternative therapies.
Context
This review will consider studies occurring in any country.
Types of studies
This review will consider studies that focus on qualitative data including, but not limited to, study designs such as phenomenology, grounded theory, ethnography, action research and feminist research.
Search strategy
The search strategy aims to find both published and unpublished studies. A three step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be 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 will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English from 2003 to 2013 will be considered for inclusion in this review. In 1994, more than half the population were surviving 10 years and 57.9% were surviving five years after a diagnosis of cancer and survivorship issues have since become increasingly relevant and prevalent in the literature. By 2003 there had been sufficient development of the literature in this area, hence studies published from 2003 will be considered for inclusion in this review. The databases to be searched include: CINAHL, PubMed, Embase, and PsycINFO.
The search for unpublished studies will include: ProQuest Dissertations & Theses, A & I and MedNar.
Initial keywords to be used will be:
cancer, neoplasm, tumor, cancer survivors, unmet needs, barriers, gaps, qualitative, interviews, focus groups, phenomenology, grounded theory, ethnography, action research and feminist research.
Assessment of methodological quality
Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardized critical appraisal instrument, the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.
Data collection
Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives.
Data synthesis
Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form.
Conflicts of interest
The author has no conflict of interests.
Acknowledgements
Ms Judith Hocking's assistance as the secondary reviewer is acknowledged. This systematic review will contribute towards the Masters in Clinical Science degree from The University of Adelaide.
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Appendix I: Appraisal instruments
QARI appraisal instrument[Context Link]
Appendix II: Data extraction instruments
QARI data extraction instrument[Context Link]
Keywords: cancer; neoplasm; tumor; cancer survivors; unmet needs; barriers; gaps; qualitative; interviews; focus groups; phenomenology; grounded theory; ethnography; action research; feminist research