4 research outputs found

    Beyond hormone replacement: quality of life in women with congenital hypogonadotropic hypogonadism.

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    Little is known about how women with isolated GnRH deficiency cope with their condition. This study aimed to examine the health and informational needs of women with congenital hypogonadotropic hypogonadism (CHH) and evaluate if their experiences differ from women with more common forms of infertility. Cross-sectional, multiple methods study using web-based data collection to reach dispersed rare disease patients. A community-based participatory research framework was employed to develop an online survey and collect quantitative and qualitative data. Adult women diagnosed with CHH who had received at least one year of hormonal treatment completed the Morisky Medication Adherence Scale, Revised Illness Perception Questionnaire and Zung Self-Rating Depression Scale. Information on health care experiences, treatment outcomes and patient-reported challenges were also collected. Women (n = 55) were often diagnosed late (20.7 ± 7.4, range: 10-48 years) and 16/20 patients receiving fertility treatment conceived. Poor adherence was frequently observed (34/55) while more than half (27/49) reported a gap in treatment exceeding a year. Low adherence correlated with depressive symptoms (r = 0.3, P > 0.05). Negative illness perceptions were pervasive and 30/55 exhibited some depressive symptoms - significantly greater than women with common female factor infertility (P < 0.01). Symptoms were underappreciated by providers as only 15 of 55 patients had discussions about psychological services. Women identified isolation, need for information and finding expert care as challenges to living with CHH. Despite being a treatable form of female infertility, the presumable availability of treatment does not necessarily ensure adequate quality of life for women with isolated GnRH deficiency

    Facilitators and barriers in implementing clinical nursing assessment in mental health care for older people: A multimethod approach.

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    With the aging of the population and the growing prevalence of dementia, specialized and collaborative nursing care is paramount in this area. To ensure better quality care, it is necessary to use effective and context-specific processes to implement evidence-based practices and more specifically clinical nursing assessment. This study aimed to identify and describe factors that may influence the implementation of clinical nursing assessment in mental health care for older people. The Consolidated Framework for Implementation Research was employed to guide evaluation in the pre-implementation phase in the specific context of mental health care for older people. Using a multimethod approach, interviews, focus groups, and a quantitative survey were conducted with a non-probability convenience sample. A total of 39 hospital nurses (registered nurses and head nurses) were interviewed. Analysis yielded five main factors, notably three barriers and two facilitators. Barriers include a lack of general nursing culture, deficiencies in leadership, and difficulties in communication and collaboration. Facilitators comprise team cohesion and the perceived benefits of the study

    Clinical Management of Congenital Hypogonadotropic Hypogonadism

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