Living with leg lymphedema: developing a novel model of quality lymphedema care for cancer survivors

PURPOSE: Lower-extremity lymphedema (LEL) is a lifelong consequence of cancer therapy and can lead to serious physical and psychosocial complications for many cancer survivors. However, clinical knowledge and treatment of LEL remain minimal. The purpose of this study was to integrate perspectives of lymphedema patients and healthcare providers (HCPs) on LEL to develop a novel model for quality lymphedema care. METHODS: A mixed-methods approach was implemented. Standardized questionnaires and semi-structured interviews were used to assess psychosocial well-being and experiences of LEL patients. Interviews were also used to evaluate the clinical experiences of HCPs working within tumour groups associated with cancer-related LEL. Thematic analysis was used to analyse qualitative data. RESULTS: Twenty-two patients and eleven HCPs participated in this study. Patient QOL, generalized anxiety and depressive symptom scores revealed a complex interplay between psychosocial well-being and supportive LEL care after cancer. Three themes emerged from interviews with patients (n = 19) and HCPs (n = 11): level of lymphedema knowledge, effectiveness of rehabilitation oncology services and barriers to care. IMPLICATIONS FOR CANCER SURVIVORS: We developed a novel model for quality lymphedema care that emphasizes the importance of continued physical and psychosocial support for LEL patients, while illustrating the importance of HCPs in facilitating a smooth transition for patients to LEL care after cancer treatment. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11764-020-00919-2) contains supplementary material, which is available to authorized users.