An evaluation of the provision of oncology rehabilitation services via telemedicine using a participatory design approach.

BACKGROUND: The COVID-19 pandemic has fundamentally impacted the delivery of healthcare services globally. In line with UK government guidelines on social distancing, the use of telemedicine was implemented to facilitate the ongoing provision of cancer rehabilitation. PURPOSE: We sought to evaluate and co-design telemedicine services to meet the complex needs of our patients and carers at a tertiary cancer centre. METHODS: Experience-based co-design methodology was adapted to include virtual methods. Staff members (n = 12) and patients (n = 11) who had delivered or received therapies services at our UK cancer centre since March 2020 were recruited to take part in one-to-one virtual interviews. Patient interviews were video recorded, analysed and edited to a 30-min "trigger film". Patient and staff virtual events were undertaken thereafter. A joint virtual patient and staff event occurred. Staff and patients watched the trigger film and as partners, agreed areas for change and developed groups for service co-design. RESULTS: Positive aspects regarding telemedicine provision were highlighted including reduced financial and time burden on patients, and increased flexibility for both staff and patients. The key concerns included digital exclusion, safety, communication and patient choice. Four co-design groups have been established to enact changes in these priority areas. CONCLUSION: Using a participatory design approach, we have worked in partnership with patients and staff to ensure the safe, acceptable and effective delivery of rehabilitation services with integrated telemedicine.

Exploring patient perception of success and benefit in self-management of breast cancer-related arm lymphoedema.

PURPOSE: The aim of this study was to identify factors influencing patient perception of success and benefit with self-management of breast cancer-related lymphoedema (BCRL) and explore how patients decide whether their swollen limb has improved or deteriorated. METHODS: This qualitative study used a Grounded Theory approach. Twenty-one women in the BCRL self-management phase participated in one in-depth interview exploring their experience and perspective on self-managing their BCRL. FINDINGS: Seven enablers and blocks to self-management were identified: routine, recognising benefit of self-management and consequences of non-treatment, owning treatment, knowledge and understanding, problem-solving, time required for treatment and aesthetics of hosiery. Women determined treatment outcome by monitoring size, appearance, texture and internal sensations within the affected arm. CONCLUSIONS: Women who participated in this study showed varying degrees of acceptance and adjustment to life with lymphoedema. This appears to directly impact their ability to self-manage lymphoedema. Lymphoedema practitioners and oncology nurses have a valuable role providing knowledge and support to patients transitioning to independent self-care. A better understanding of factors facilitating patients to become experts in their condition may improve longer term outcomes and reduce cost pressures on lymphoedema services.