Development of a support network for adolescents with endometriosis

Abstract

Background Endometriosis is a chronic disease that can cause severe pelvic pain in adolescents. We sought to develop a support network to educate adolescents, their families, schools, and peers. In addition, we aimed to develop a network to assist adolescents coping with this chronic disease, that could then be adapted for use by other local and national chapters of the Endometriosis Association (EA). Methods Patients were informally surveyed by their health care provider to inquire if they thought that they would benefit from an “Endometriosis Teen Support Group”; if they answered affirmatively they were asked if they would like to be contacted by the Boston Chapter of the EA. The EA was contacted with the names of those patients who were interested. A support group for adolescents was established with in the EA which provided information to patients, parents, health care providers, and schools by supplying periodic newsletters, literature, and book lists. In addition members of the EA contacted the adolescents by telephone to periodically offer advice for coping with specific endometriosis problems that arose, and for effective communication with doctors, teachers, or parents. Monthly Sunday afternoon meetings were established addressing subjects of interest to the adolescent with endometriosis and her parents. After one year of existence the EA contacted the adolescent members by telephone to assess their perspective of the support group in order to improve services. Results 30 adolescents with endometriosis were identified who desired contact by the EA. The mean age at the time of referral was 17 years (range: 14–21). The mean number of months of association with the EA was 7 (range: 1–12). The adolescents selected “TEEN: Teen Endometriosis Education Network” as the name for the support group. They reported that the “best” day for meetings was Sunday, and preferred that the meeting be held at a hospital (70%) as compared to a school (30%). They preferred that the meetings occur monthly as opposed to bi-monthly. 100% wanted to receive a newsletter. 900% wanted to be contacted by other adolescents by phone at the time of their diagnosis. 900% wanted to be a contact person for newly diagnosed individuals with endometriosis. 60% wanted to have a designated “big sister” with endometriosis. 60% of the young women wanted information about endometriosis distributed to schools: 90% of those in high school, 20% of those in college. 100% stated that they found the TEEN to be helpful. Conclusions Adolescents with endometriosis feel that they benefit from an age specific support system. We present “TEEN - Teen Endometriosis Education Network” as a model for other chapters of the EA to establish proven support and education for adolescents, their families, and schools.