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ED 05 - Case Presentations (3 Lung Cancer and 1 Mesothelioma) Discussed in Round Table Format (ID 5)
- Event: WCLC 2015
- Type: Education Session
- Track: Nursing and Allied Professionals
- Presentations: 1
ED05.03 - Approach to Offering Remote Support to Mesothelioma Patients: The Mesothelioma Survivor Project (ID 1790)
14:15 - 15:45 | Author(s): T. Bressler
Background: From the moment of diagnosis, malignant mesothelioma (MM), decreases health-related quality-of-life (QOL) in patients and their caregivers. In addition to the symptoms of the disease itself, aggressive treatments options such as surgery, radiation, and chemotherapy can cause side effects which border on the intolerable. Specifically, chemotherapy is associated with side effects such as fatigue, nausea, vomiting, and systemic pain which has been described as unpleasant and stressful. The side effects of treatments can be burdensome enough to lead to noncompliance or outright refusal of continuation of care. Data from 13 frequently cited QOL studies conducted in the United States and Europe between 1990 and 2009 focus on chest pain and shortness of breath as the two chief symptoms of pleural mesothelioma. The largest QOL study to date, conducted across five continents, enrolled 495 patients in a multicenter study evaluating MM using the LCSS (lung cancer symptom scale). Investigators reported the most common symptoms as: fatigue (94%), dyspnea (89%), loss of appetite (86%), Chest pain (85%), cough (75%), and hemoptysis (24%). Ninety-two percent of patients experienced three or more above symptoms. Research on the psychological aspects of patients living with mesothelioma has shown their disregard for their exposure to asbestos in respect to their diagnosis. One such study investigated the reactions of 38 patients upon diagnoses with mesothelioma. Interestingly, although most patients had exposure to asbestos, only 17% of patients reported being concerned about their health prior to diagnosis, and, perhaps most interestingly, 65% of those with asbestos exposure denied anger towards the asbestos industry. Such studies’ preliminary findings suggest the need for better information about asbestos and mesothelioma, especially for high-risk individuals. Mesothelioma has a number of emotional consequences as well. A study conducted by the British Lung Foundation (BLF) reported significant impairment of emotional function and/or emotional state in patients with mesothelioma and their family members. The BLF’s study further reported a more positive response amongst patients versus caregivers in regards to supportive treatment to their emotional functioning. However, the authors did not provide a definition for significantly impaired emotional functioning, opacifying the results of such support. Recent psychological studies have demonstrated health benefits in cancer patients when sharing their illness experiences through online blogs. It has been suggested that blogging creates a survivor identity and facilitates a social support network for patients. Further, studies suggest that expressive writing increases self-management of chronic pain and lowers depressive symptoms. Methods: The platform for the support group was remote, consisting of both online and telephone domains. Each participant received an email a week prior to support sessions with an access code to the online and phone conference systems. Participants would utilize both online and phone systems during sessions, which were held once a week during evenings for a total of 6 weeks. Sessions were guided (by a team of healthcare professionals consisting of: a social worker, nurse, and community group leader) and kept closed, available only to those affected by mesothelioma – confidentiality was kept strong to encourage dialogue. The only non-patient participants were the group’s facilitators. The platform facilitated anonymity, should a patient have wished to remain so. Session summaries and follow-up information were provided online after support meetings. Conclusions: Active participation in a guided support group allowed participants to share their feelings and concerns about their diagnosis without feeling judged by their peers or healthcare providers while getting the emotional, mental, and post-active treatment support they needed facilitating the transition to follow-p care. The online portion of the platform was particularly helpful in assuaging common negative concerns like: fear of healthcare provider judgment, confidentiality, self-editing, emotional backlash from loved ones, and disapproval of lifestyle post-active treatment. Analysis of support session dialogue allowed facilitators to gauge information available to patients as well as to provide information about life after active treatment. Online space (on our blogs) gave participants a place to provide more communicative responses outside the main dialogue of support sessions.
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