Strategies for Successful Long-Term Engagement of Adults With Phenylalanine Hydroxylase Deficiency Returning to the Clinic
J. inborn errors metab. screen
;
5: e170015, 2017. tab
Article
in English
|
LILACS-Express
| LILACS
| ID: biblio-1090941
ABSTRACT
Abstract 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.
Full text:
Available
Index:
LILACS (Americas)
Type of study:
Qualitative research
Language:
English
Journal:
J. inborn errors metab. screen
Journal subject:
Medicina Cl¡nica
/
Patologia
Year:
2017
Type:
Article
Affiliation country:
United States
Institution/Affiliation country:
Ann & Robert H. Lurie Children's Hospital of Chicago/US
/
BioMarin Pharmaceutical Inc/US
/
Children's Hospital of Pittsburgh of UPMC/US
/
Oregon Health & Science University/US
/
University of Colorado School of Medicine/US
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