Recent evidence appears to back the idea that private, guided support groups can help mesothelioma patients navigate the emotional ups-and-downs of this devastating and aggressive cancer – even if they meet via phone and email.
In an article published in the Journal of Clinical Oncology, the developers of the Mesothelioma Survivor Project report that mesothelioma patients who actively participated in online and telephone support groups made up exclusively of other mesothelioma patients had a better experience of treatment, got their questions answers, and found the group “very helpful”.
The Emotional Toll of Mesothelioma Treatment
As the authors observe, a mesothelioma diagnosis and subsequent treatment can take a heavy toll on a patient’s health-related quality of life.
They cite a 495-patient mesothelioma quality of life study listing fatigue as the most common mesothelioma symptom (94%), followed by shortness of breath (89%), appetite loss (86%), chest pain (85%) and cough (75%).
“In addition to symptoms of disease, aggressive treatments such as surgery, radiation, and chemotherapy can cause extreme side effects…chronic fatigue, unremitting nausea, vomiting, and systemic pain,” states the new report.
But physical symptoms were only part of the equation. A British Lung Foundation study reported “significant impairment of emotional function” in both malignant mesothelioma sufferers and their family members.
Support for Mesothelioma Sufferers
To test the value of remote support groups, the team invited mesothelioma patients to utilize both phone and online systems during six weekly sessions.
Each session was moderated by a counselor and was open only to those fighting malignant mesothelioma. After each support group meeting, participants completed surveys about their experience and received session summaries and follow-up information.
On a scale of 0 to 5, mesothelioma patients who attended the sessions consistently rated them a 4. Those who attended irregularly had mixed reviews. Some found the sessions they did attend to be extremely helpful (5) while others were merely neutral (3).
The report concludes that the group gave mesothelioma patients a safe space to share experiences and concerns and even provided support for patients who were no longer responding to treatment. They found that the online portion of the support group was particularly helpful in letting people share and relieve some of their most pressing concerns.
Bressler, Toby, et al, “Approach to offering remote support to mesothelioma patients: The Mesothelioma Survivor Project”, January 20, 2017, Journal of Clinical Oncology