Introduction. Improved models of care are needed to meet all the support needs of people with cancer, which encompass psychological, emotional, physical, spiritual, sexual, occupational, social and existential needs. The aim of this article is to (a) evaluate short- and long-term impacts of using a whole person approach to support people with cancer on the Living Well with the Impact of Cancer Course (LWC) and (b) use these data to inform strategic decisions about future service provision at Penny Brohn UK. Methods. Longitudinal mixed-methods service evaluation (n = 135). Data collected included health-related quality of life (HRQoL) (FACIT-SpEx); Concerns (types and severity–MYCaW); lifestyle behavior (bespoke questionnaire), and participants’ experiences over 12 months postcourse. Results. Statistically and clinically significant improvements from baseline to 12 months in severity of MYCaW Concerns (n = 64; P < .000) and mean total HRQoL (n = 66; P < .000). The majority of MYCaW concerns were “psychological and emotional” and about participants’ well-being. Spiritual, emotional, and functional well-being contributed most to HRQoL improvements at 12 months. Barriers to maintaining healthy lifestyle changes included lack of support from family and friends, time constraints, and returning to work. Three to 6 months postcourse was identified as the time when more support was most likely to be needed. Conclusions. Using a whole person approach for the LWC enabled the needs of participants to be met, and statistically and clinically significant improvements in HRQoL and MYCaW Concerns were reported. Qualitative data analysis explored how experiencing whole person support enabled participants to make and sustain healthy lifestyle changes associated with improved survivorship. Barriers experienced to making health behavior change were also identified. These data then informed wider and more person-centered clinical provision to increase the maintenance of positive long-term behavior changes. Comparison of whole person approaches to cancer treatment and support and standard care are now urgently needed.
MYCaW scores were highly responsive to change, allowing personalized patient outcomes to be quantified; the qualitative coding framework appears generalizable across different integrative oncology settings and has broader coverage of patient-identified concerns compared with existing cancer-related patient-reported outcome measures.
The term "whole-person cancer care"-an approach that addresses the needs of the person as well as treating the disease-is more widely understood in the United Kingdom than its synonym "integrative oncology." The National Health Service (NHS) provides free access to care for all, which makes it harder to prioritize NHS funding of whole-person medicine, where interventions may be multimodal and lacking in cost-effectiveness data. Despite this, around 30% of cancer patients are known to use some form of complementary or alternative medicine (CAM). This is virtually never medically led, and usually without the support or even the knowledge of their oncology teams, with the exception of one or two large cancer centers. UK oncology services are, however, starting to be influenced from three sides; first, by well-developed and more holistic palliative care services; second, by directives from central government via the sustainable health care agenda; and third, by increasing pressure from patient-led groups and cancer charities. CAM remains unlikely to be provided through the NHS, but nutrition, physical activity, mindfulness, and stress management are already becoming a core part of the NHS "Living With and Beyond Cancer" agenda. This supports cancer survivors into stratified pathways of care, based on individual, self-reported holistic needs and risk assessments, which are shared between health care professionals and patients. Health and well-being events are being built into cancer care pathways, designed to activate patients into self-management and support positive lifestyle change. Those with greater needs can be directed toward appropriate external providers, where many examples of innovative practice exist. These changes in policy and vision for the NHS present an opportunity for integrative oncology to develop further and to reach populations who would, in many other countries, remain underserved or hard to reach by whole-person approaches.
This is the first person-centred tool specifically designed for capturing IC's concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations.
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