The Partner Perspective of the Impact of Pituitary Diseases: Looking Beyond the Patient

Program: Abstracts - Orals, Poster Previews, and Posters
Session: SAT 523-548-Pituitary Disorders - It's Not the Anterior Pituitary (posters)
Saturday, April 2, 2016: 1:15 PM-3:15 PM
Exhibit/Poster Hall (BCEC)

Poster Board SAT 539
Cornelie D. Andela*1, Jitske Tiemensma2, Margreet Scharloo3, Alberto M. Pereira1, Adrian A Kaptein3, Noƫlle GA Kamminga3 and Nienke R. Biermasz1
1Leiden University Medical Center, Leiden, Netherlands, 2University of California Merced, 3Leiden University Medical Center, Netherlands
Background: Patients with pituitary disease report impairments in Quality of Life (QoL).  From other patient populations, it is known that partners of patients with a chronic disease also report QoL impairments and that well-being of patients is associated with the well-being of their partners. Until now, there is no data available about well-being of partners of patients with pituitary disease.

Objective: To elucidate well-being of partners of patients with pituitary disease.

Methods:  We conducted four independent focus groups of 4-6 partners of patients with a pituitary disease (Cushing’s disease, non-functioning adenoma, acromegaly, prolactinoma). In two sessions, these groups discussed the impact of the pituitary disease of their partner. Verbatim transcripts were analysed using a grounded theory approach.

Results: Partners mentioned the negative influence of the disease on their own lives, including worries (related to pituitary disease and medication), coping difficulties (uncertainty about comforting or encouraging the ill partner, adaptation, high sense of responsibility, differences in coping styles), relationship issues (changes in relationship, communication with ill partner, viewing the ill partner differently, issues regarding sexuality, issues with the desire to have children), social issues (difficulties in communication about the disease, lack of sympathy from environment, smaller social network, negative impact on family, negative impact of work) and unmet needs regarding care (insufficient information, no recognition for certain complaints, dissatisfaction about aspects of medical care).

Conclusion: This first focus group study in partners of patients with pituitary disease elucidates the negative impact and its consequences on the lives of partners. The study emphasizes the importance of not only paying attention to the psychosocial burden perceived by patients, but to also pay attention to their partners. Information obtained from this study can be used for the development of a disease-specific questionnaire for partners of patients with pituitary disease.

Nothing to Disclose: CDA, JT, MS, AMP, AAK, NGK, NRB

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