Cancer Survivorship: Understanding the patients’ journey and perspectives on post-treatment needs

Abstract

Abstract Background: Cancer treatments have many adverse effects on patient’s health leading to poor cardiorespiratory capacity, muscular- degeneration, fatigue, loss of strength and physical function, altered body-composition, compromised immune-function, peripheral neuropathy, and reduced quality of life (QOL). Exercise programs can significantly increase functional capacity when tailored to individual needs, thus improving patients' health. Exercise interventions in cancer rehabilitation, when supported by appropriate nutrition can be effective in attaining a healthy weight and body-composition. The successful rehabilitation program should also include psycho-social education aimed to reduce anxiety and improve motivation. Several studies have outlined the need to develop rehabilitation-services to minimise the impact of cancer and to reduce future burden on the patient and on health services. A comprehensive service that can provide long-term support for cancer-survivors has not been established in Ireland. Study aims: The current study aimed to identify the post-treatment needs of cancer patients including information on the barriers and expectations facing them, their caregivers and their families through consultation in focus group interviews. The information would serve as a guide for the development and evaluation of an individualised, adaptive, exercise program for physical rehabilitation of cancer survivors. Methods: Cancer survivors living in the Republic of Ireland were recruited to study and invited to attend a focus group interview. The focus group discussions were designed to obtain information on the collective views of cancer survivors on relevant topics and the meanings that lie behind those views. Results: 37 participants took part in 9 focus groups. Focus group transcripts were then subjected to a thematic framework analysis using NVivo. Our analysis uncovered two themes. The first theme ‘cast adrift with no direction’ was grouped into three sub-themes: everything revolves around treatment; panic and fear; and what exercise should I be doing? The second theme ‘everybody is different’ was clustered into two sub-themes: side effects get in the way; and personalized exercise program Conclusion: The main findings of our study as illustrated by the thematic analysis shows that the patients have unmet post-treatment needs that can be broadly classified into (i) Information and support needs, (ii) Psycho-social needs, (iii) Physical needs and need for a “personalised” exercise programme. The study highlighted the lack of information and support that needed by patients in living with and beyond cancer. The study also highlighted effectiveness of a personalised exercise programme in the mitigation of long term symptoms and in improving QOL. There is an urgent need for design and delivery of such a programme through community based cancer centres.