Strategies for Successful Long-Term Engagement of Adults With Phenylalanine Hydroxylase Deficiency Returning to the Clinic
| Autor: | Heather Bausell, Janet A. Thomas, Jane Breck, Mina Nguyen-Driver, Vanessa Birardi, Javier Zambrano |
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| Jazyk: | angličtina |
| Rok vydání: | 2017 |
| Předmět: |
0301 basic medicine
medicine.medical_specialty Pediatrics phenylalanine hydroxylase deficiency Phenylalanine hydroxylase Endocrinology Diabetes and Metabolism phenylketonuria rare disease patient outcomes 030105 genetics & heredity 03 medical and health sciences 0302 clinical medicine metabolic clinic medicine Psychiatry Genetics (clinical) Attending clinic lcsh:R5-920 biology business.industry Pediatrics Perinatology and Child Health biology.protein business lcsh:Medicine (General) 030217 neurology & neurosurgery management Rare disease |
| Zdroj: | Journal of Inborn Errors of Metabolism and Screening v.5 2017 Journal of Inborn Errors of Metabolism and Screening Instituto Genética para Todos (IGPT) instacron:IGPT Journal of Inborn Errors of Metabolism and Screening, Volume: 5, Article number: e170015, Published: 16 MAY 2019 Journal of Inborn Errors of Metabolism and Screening, Vol 5 (2017) |
| Popis: | Nearly half of all patients diagnosed with phenylalanine hydroxylase (PAH) deficiency, also known as phenylketonuria, are lost to follow-up (LTFU); most are adults who stopped attending clinic after the age of 18 years. To understand why adult patients with PAH deficiency disengage from their clinic, a focus group of 8 adults with PAH deficiency who had been LTFU for 2 or more years was held in March 2016. Ten clinicians observed the focus group and discussed strategies for successfully reengaging adult patients and encouraging lifelong management of PAH deficiency. Four strategies were proposed: (1) create a safe, supportive environment, (2) acknowledge patients as partners in their care, (3) develop individualized management plans, and (4) provide patients with additional resources. These strategies provide a framework to motivate change in clinical practice to meet the unique needs of adults with PAH deficiency. |
| Databáze: | OpenAIRE |
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