Question: Dr. Andela, from your work, what impact does Cushing’s have on the patient’s partner and family? 

Answer: From past published work, it is known that quality of life is negatively impacted during active Cushing’s and sometimes does not completely recover. From other published work on chronic disorders, it is also known that not only is the patient impacted, but the partner and family is as well. There have been no reports on the impact of pituitary disease on the quality of life of partners or family members. To investigate the impact of pituitary disease, we conducted a series of focus groups asking partners their feelings on the impact of their partner’s disease. Regardless of the type of pituitary disease, partner’s lives were affected. Specific items mentioned included worries about their partner’s health, difficulty coping with life changes, changes in communication and roles, sexuality problems, and lack of understanding of the disease from family and friends. Also mentioned was the feeling of unmet needs regarding how the medical professions views and answers questions regarding the disease. Partners also mentioned changes due to smaller social circle and difficulties in knowing when to encourage and when to comfort a partner. These data indicate that it is important to consider how a pituitary disease impacts not only the patient, but also the potential partner and family.

Endo 2016: The Partner Perspective of the Impact of Pituitary Diseases: Looking Beyond the Patient Poster Board SAT 539

Authors: Cornelie D. Andela*(1), Jitske Tiemensma (2), Margreet Scharloo (3), Alberto M. Pereira (1), Adrian A Kaptein (3), Noëlle GA Kamminga (3) and Nienke R. Biermasz (1)
1 Leiden University Medical Center, Leiden, Netherlands, 2 University of California Merced, 3 Leiden University Medical Center, Netherlands

Newsletter: Summer, 2016