Searchable abstracts of presentations at key conferences in endocrinology
Endocrine Abstracts (2015) 37 EN2.4 | DOI: 10.1530/endoabs.37.EN2.4

ECE2015 Endocrine Nursing Professional development, poster presentations and networking (6 abstracts)

Research topic: identifying the needs of patients with Congenital Hypogonadotrophic Hypogonadism, implications for nursing practice

Andrew Dwyer


University Hospital Lausanne (CHUV), Lausanne, Switzerland.


Rare disease patients are frequently seen in endocrine clinic. These patients are not only faced with serious health challenges resulting from their chronic conditions, but often struggle with significant psychosocial impact. Understanding unmet patient needs and activating patients to become engaged participants in managing their condition are essential aspects for improving long-term outcomes for rare/chronic disease patients. Using the example of congenital hypogonadotropic hypogonadism (CHH) this presentation will review a nurse-led needs assessment that leveraged technology to reach dispersed rare disease patients. The identified shortfalls in care will be reviewed and discussed in the context of applicability to other endocrine disorders and will highlight targets for intervention for improving adherence to treatment, transitional care and quality of life. Discussion will include implications for nursing/multidisciplinary holistic care and will detail the community-based participatory research approach, mixed-methods research methodology, and helpful hints for those interested in applying these principles to other rare diseases/clinical settings.

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