Session: SAT 281-290-Comparative Effectiveness/Health Outcomes/Quality Improvement/Patient or Provider Education/Endocrine Emergencies
Poster Board SAT-281
Methods: Six clinical experts, seven patient focus groups and four individual patient interviews were conducted in in three countries (USA, UK, Germany). Expert clinicians (endocrinologists and nurse educators) saw at minimum 100 AGHD patients yearly. Eligible patients were age 22 years or older and diagnosed with AGHD of any etiology and who had started and stopped GH treatment at least once as an adult. The patient focus groups and interviews were guided by a semi-structured interview schedule that was based on the preliminary discussions with clinical experts and a literature review. The patient transcripts were hand coded and analyzed thematically based on modified grounded theory principles to derive common themes and concepts.
Results: The clinical experts identified key domains of impact: energy levels, personal well-being, body mass and barriers to treatment behavior (persistence and adherence). Experts concurred that current AGHD measures were not adequate to assess the impact of treatment on their patients. Thirty-nine patients were interviewed; 59% were female, mean age 50.7 years (range 22 –82). GHD etiology for the majority was pituitary disease or pituitary tumor (62%). Thirty four patients (87%) were currently on GH replacement therapy and the average age when initiating GH replacement was 43 years (range 5 to 71). Analysis identified five domains of impact. Psychological Health: Patients struggle with changed body and self-image due to AGHD. Emotional impacts include anxiety, anger, depression or low mood, and irritability in addition to tension in their relationships with others. Physical Health: Patients associate problems with sleep, weight gain, metabolism, hair, skin, muscle mass and bone loss, and high cholesterol with AGHD. Cognition: Patients associate trouble with concentration and memory with having AGHD. Energy Loss: Energy loss negatively impacts multiple aspects of life, including work efforts and productivity, the ability to exercise or accomplish daily chores, a reduction in socializing, and a general decrease in drive and motivation. Treatment Effect:Patients report that treatment enhances their quality of life and enables them to increase exercise, accomplish their chores and daily tasks, and improves their work experience. Their energy is improved, they sleep better, and they have increased muscle mass while on GH treatment. Based on the analysis, a conceptual model of the impact of disease and treatment was developed.
Conclusion: Untreated AGHD results in significant and wide-ranging negative impacts on patient’s daily functioning which can be mitigated with treatment.
Disclosure: MB: Consultant, Novo Nordisk. LH: Employee, Novo Nordisk. EA: Employee, Novo Nordisk, Owner, Novo Nordisk. MH: Employee, Novo Nordisk.
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