Approach to offering remote support to mesothelioma patients: The Mesothelioma Survivor Project.

Abstract

82 Background: From the moment of diagnosis, malignant mesothelioma (MM), decreases health-related quality-of-life (QOL) in patients and their caregivers. In addition to symptoms of disease, aggressive treatments such as surgery, radiation, and chemotherapy can cause extreme side effects – specifically, chemotherapy is associated with chronic fatigue, unremitting nausea, vomiting, and systemic pain. These side effects of treatments can be burdensome enough to lead to noncompliance or outright refusal of continuation of care.[1] Data from 13 frequently cited QOL studies focus on chest pain and shortness of breath as the two chief symptoms of pleural mesothelioma. The largest QOL study to date enrolled 495 patients, evaluated MM using the LCSS (lung cancer symptom scale). Investigators reported MM’s most common symptoms as: fatigue (94%), dyspnea (89%), loss of appetite (86%), chest pain (85%), cough (75%), and hemoptysis (24%). In addition, mesothelioma has a number of emotional consequences. A study by the British Lung Foundation (BLF) reported significant impairment of emotional function and/or emotional state in patients with mesothelioma and their family members.[2] Methods: The platform for the support group was remote, consisting of both online and telephone domains. Participants would utilize both online and phone systems during sessions, held once a week for a total of 6 weeks. Sessions were guided and kept closed, available only to those affected by mesothelioma. Participants completed surveys after each support group. Session summaries and follow-up information were provided online after support meetings. Results: Using a 0-5 Likert Scale, consistent attendees reported support groups as very helpful (4). Irregular attendees had mixed feelings ranging from extremely helpful (5) to neutral (3). 80% of attendees participated in support groups prior to ours. Conclusions: Active participation in a guided and closed support group allowed participants to share their experiences and concerns about their diagnoses, comfortably – supporting transition beyond active-treatment. The online portion of the platform was helpful in assuaging common negative concerns.