Your doctor has some good advice for you. Never stop taking your mesothelioma medicines.
You want to live long? Then keep taking those medicines.
Yet many mesothelioma patients do just the opposite. They stop taking their medicines. Or they get lazy and take them only occasionally. Or they simply forget. This has a name. It’s called noncompliance.
Doctors know that noncompliance with a prescription medication regimen is about the worst thing that is possible to do when right in the middle of a fight with mesothelioma.
A team of investigators from three New York City mesothelioma centers contends that compliance with medication regimens increases when patients participate in a mesothelioma support group.
Mesothelioma Survivor Project Offers Support
The researchers are affiliated with New York-Presbyterian Hospital, Maimonides Medical Center and Columbia University Medical Center.
Their ideas about mesothelioma support group participation were presented at the Cancer Survivorship Symposium held earlier this year in San Francisco. The Cancer Survivorship Symposium is an event organized by the American Society of Clinical Oncology.
The researchers titled their presentation “Approach to Offering Remote Support to Mesothelioma Patients: The Mesothelioma Survivor Project.”
Disease symptoms combined with surgery, chemotherapy and radiation can sap a mesothelioma patient of his will to fight on and to do the right things for himself, the researchers assert.
Then there are the side effects of treatment. These can be particularly bad with chemotherapy. The side effects of chemotherapy include “chronic fatigue, unremitting nausea, vomiting and systemic pain,” the researchers indicated.
“These side effects of treatments can be burdensome enough to lead to noncompliance or outright refusal of continuation of care,” they added.
Remote Support Groups Help Quality of Life for Mesothelioma Patients
In order to arrive at their findings, the researchers analyzed data from a number of earlier quality-of-life studies. The studies of greatest interest to them dealt with how patients coped with the chest pain and shortness of breath that typically accompanies pleural mesothelioma.
In one of these studies there were nearly 500 mesothelioma patients who participated. Each was assessed with the help of a standardized lung cancer symptom scale.
That particular study revealed 94 percent of the participants complained of fatigue. Eighty-nine percent said they experienced difficulty breathing. Appetite loss was a problem for 86 percent of them. Nearly that same number listed chest pain as a symptom. Three-quarters cited chronic cough as a problem.
Other studies made note of the emotional toll that mesothelioma takes on patients. The researchers cited an investigation by the British Lung Foundation that described significant impairments of emotional function and outlook.
The researchers went on to discuss a support group concept they had studied. According to the researchers, this concept appeared to be helpful to many of mesothelioma patients.
It involved a formal support group that met once a week. The meetings were led by a mesothelioma-specialized mental health professional. But there was a twist. The meetings were conducted online and by phone link.
Therefore, each participating patient could attend remotely. There was no need to travel to a central location. In other words, patients could participate from practically anywhere.
Additionally, patients were provided around-the-clock access to support. They were encouraged to go online or call in to talk to a support group representative anytime they wanted.
Effect of Support Groups on Mesothelioma Patients Examined
Patients who participated in this remote support group were asked at the end of each formal session to fill out a satisfaction survey. The responses helped the organizers gauge the value of the sessions.
The most faithful attendees indicated through the surveys that they found the sessions to be very helpful.
Meanwhile, patients whose attendance had been spotty was divided between those who said they found the sessions “extremely helpful” and those who had no strong feelings one way or the other.
From this the researchers concluded that 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.”
They also said they were confident that the online portion of the platform was “helpful in assuaging common negative concerns” that patients have about mesothelioma and its consequences.