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Endocrine Abstracts (2016) 41 GP159 | DOI: 10.1530/endoabs.41.GP159

ECE2016 Guided Posters Pituitary - Clinical (1) (10 abstracts)

The partner perspective of the impact of pituitary disease: results from a focus group study

Cornelie Andela 1 , Jitske Tiemensma 2 , Adrian Kaptein 1 , Margreet Scharloo 1 , Alberto Pereira 1 , Noëlle Kamminga 1 & Nienke Biermasz 1

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1Leiden University Medical Center, Leiden, The Netherlands; 2University of California, Merced, California, USA.


Background: Patients with pituitary disease demonstrated Quality of Life (QoL) impairment. From other chronic diseases it is known that partners of patients also report impairments in QoL. Furthermore, it is observed that well-being of patients is associated with the well-being of their partners. To date, no data are available on the well-being of partners of patients with pituitary disease. Therefore, the aim of the present study was to explore well-being of partners of patients with pituitary disease.

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

Results: Partners reported the negative influence of pituitary disease on their own lives, including worries (related to the pituitary disease and the medical treatment), coping difficulties (uncertainty about comforting or encouraging the ill partner, problems with adaptation, high sense of responsibility, differences in coping styles), relationship issues (changes the 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, changes in social network, negative impact on family, negative impact on work) and unmet needs regarding care (insufficient information, no recognition for certain complaints, dissatisfaction about aspects of medical care).

Conclusion: This first explorative focus group study in partners of patients with pituitary disease elucidates the negative impact on their lives. This study emphasizes the importance of not only paying attention to the psychosocial impact of patients during medical consultation, but also to their partners. Furthermore, information obtained in this study can be used for the development of a disease-specific questionnaire for partners of patients with pituitary disease, in order to further quantitatively assess their well-being, as well as for optimizing psychosocial care not only for patients, but also for their partners.

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