Talia Hitt1,2, Kenneth R Ginsburg3,4, Pamela Cousounis5, Terri H Lipman5,6, Andrew J Cucchiara3,7, Virginia A Stallings3,8, Adda Grimberg5,3,9. 1. Division of Endocrinology and Diabetes, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA, hittt@email.chop.edu. 2. Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, Pennsylvania, USA, hittt@email.chop.edu. 3. Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 4. Craig-Dalsimer Division of Adolescent Medicine, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA. 5. Division of Endocrinology and Diabetes, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA. 6. School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 7. Center for Human Phenomic Science and Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 8. Division of Gastroenterology, Hepatology, and Nutrition, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA. 9. Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Abstract
INTRODUCTION: Parents (PP) of children in primary care clinics previously reported factors influencing their height-related medical decision making. However, patients seeking height-related care in endocrine subspecialty clinics and their parents (EP) differ demographically from the general population. OBJECTIVE: To determine EP height-related medical concerns and expectations, and to compare between EP and PP. METHODS: EP completed a survey assessing their concerns in seeking medical care for their child's height with identical questions previously asked of PP and two additional questions about growth hormone (GH) treatment. RESULTS: A greater proportion of the 166 EP (80% response rate) than the 1,820 PP (83% response rate) previously surveyed was Caucasian (75% EP, 41% PP) and privately insured (80% EP, 58% PP). Both groups rated treatment efficacy and risks most as having a bigor extreme impact on decision making (65% EP, 58% PP). The second most rated concern for EP was comparison of child's height to peers or growth chart (60% EP, 32% PP) versus child's health for PP (54% EP, 56% PP). Of the 166 EP surveyed, 76% rated GH treatment as potentially improving quality of life (QoL), with 88% reporting a minimum 3-inch height increase as necessary to improve QoL. CONCLUSIONS: Height comparisons were more likely to impact EP than PP in seeking height-related medical care for their children. EP had high expectations of QoL improvement with GH treatment, which are unlikely to be met with treatment of idiopathic short stature. Thus, clinicians should be prepared to support families in other ways that promote positive development in children with short stature.
INTRODUCTION: Parents (PP) of children in primary care clinics previously reported factors influencing their height-related medical decision making. However, patients seeking height-related care in endocrine subspecialty clinics and their parents (EP) differ demographically from the general population. OBJECTIVE: To determine EP height-related medical concerns and expectations, and to compare between EP and PP. METHODS:EP completed a survey assessing their concerns in seeking medical care for their child's height with identical questions previously asked of PP and two additional questions about growth hormone (GH) treatment. RESULTS: A greater proportion of the 166 EP (80% response rate) than the 1,820 PP (83% response rate) previously surveyed was Caucasian (75% EP, 41% PP) and privately insured (80% EP, 58% PP). Both groups rated treatment efficacy and risks most as having a bigor extreme impact on decision making (65% EP, 58% PP). The second most rated concern for EP was comparison of child's height to peers or growth chart (60% EP, 32% PP) versus child's health for PP (54% EP, 56% PP). Of the 166 EP surveyed, 76% rated GH treatment as potentially improving quality of life (QoL), with 88% reporting a minimum 3-inch height increase as necessary to improve QoL. CONCLUSIONS: Height comparisons were more likely to impact EP than PP in seeking height-related medical care for their children. EP had high expectations of QoL improvement with GH treatment, which are unlikely to be met with treatment of idiopathic short stature. Thus, clinicians should be prepared to support families in other ways that promote positive development in children with short stature.
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