Knowledge, ignorance and priorities for research in key areas of cancer survivorship: findings from a scoping review

Abstract

Background:Patients who have completed initial cancer treatment (cancer survivors) have been relatively neglected. We need data to help us better understand the needs of this group and to underpin evidence-based service development.Methods:Scoping reviews of research published in the last two decades focussing on the problems faced by cancer survivors, and the effectiveness of interventions for these problems were undertaken. The aim was to identify what we know, what we do not know and opportunities where research could provide new information. We searched for, retrieved and rapidly appraised systematic reviews sourced from the most common electronic databases supplemented by more recently published individual studies.Results:The research evidence is surprisingly limited. We have some knowledge of the prevalence and nature of depression, pain and fatigue in cancer survivors. We know much less about cognitive and physical impairment, employment, financial well-being and relationships. Even where we have evidence, it is mostly of only moderate quality, is most often only for breast cancer and focuses almost exclusively on the early phase of survivorship. We have good evidence for the effectiveness of drug treatments for pain and moderate evidence for fatigue and depression, but not for other symptoms. Interventions based on rehabilitative and self-management approaches remain in the early stages of evaluation.Interpretation:There has been a substantial amount of research describing many of the problems experienced by the cancer survivors. This is strongest in the area of symptoms in the period soon after treatment. However, the quality of the evidence is often poor, and some topics have been little examined. We urgently need data on the natural evolution and scale of the problems of cancer survivors obtained from well-designed, large-scale cohort studies and the robust testing of interventions in clinical trials. Given the current financially constrained research funding environment, we suggest areas in which strategic investment might give findings that have the potential to make a major impact on patient well-being in a 5-year time scale.

A ‘new normal’: Exploring the disruption of a poor prognostic cancer diagnosis using interviews and participant-produced photographs

“…However, participants often realised that their 'new normal' involved reduced or no employment. Although it is acknowledged that returning to a job held before a diagnosis of cancer is not straightforward (Hubbard et al, 2010;Richardson et al, 2011), we found no specific discussion of it for people diagnosed with a poor prognostic cancer. Nevertheless, as so many of our participants were keen to return to paid work, it is an important factor and one which becomes more significant to both individuals and society as survival continues to increase (Bradley and Bednarek, 2002) and Tangka et al (2013) argue that it should be included in measures of cancer's overall effect in a population due to its huge impact on employers.…”

An evaluation of research capacity building from the Cancer Experiences Collaborative

“…This is partly because there is a time lag between research and its integration into practice, but also because it is more difficult to demonstrate changes to clinical practice as a result of research. Nevertheless, some influences are being detected, for example, on policy17 and in clinical guidelines for supportive care in multiple myeloma,18 and National Cancer Survivorship Initiative participating in the NCRI rapid review to determine research priorities for cancer survivorship 19 20…”

“…This has been achieved through the promotion of evidence-based practice to benefit patient care that has also been relevant to the decision making of practitioners and policy makers. For example, research on Cancer Survivorship has informed the emerging strategic direction taken by Macmillan Cancer Support and the National Cancer Survivorship Initiative 19 26. Research and scholarship on decision making for frail older people who lack capacity has informed a Council of Europe Symposium on medical decision making at the end of life,27 and the development of guidance for health and social care staff about decision making and advance care planning in life-limiting illness 28.…”

Effectiveness of Multidimensional Cancer Survivor Rehabilitation and Cost-Effectiveness of Cancer Rehabilitation in General: A Systematic Review

“…Performing physical activity has been shown to reduce the risk for cancer recurrence and chronic disease [18] and is suggested in several guidelines and recommendations [9, 10, 12, 19 -21]. The evidence base for the long-term effects of rehabilitation is rather small because the follow-up duration is usually short [22].…”