Perspectives on dietary adherence among women with inborn errors of metabolism

Journal of the American Dietetic Association
Alex R KemperRani H Singh

Abstract

Adherence to highly restrictive diets is critical for women of childbearing age who have inborn errors of metabolism such as phenylketonuria. The purpose of this study was to explore attitudes about diet, barriers to and facilitators of dietary adherence, and experiences with the health care system in promoting dietary adherence among adolescent and adult women with inborn errors of metabolism to identify policy-level interventions to improve adherence. We analyzed the results of four focus groups including a total of 19 women between the ages of 12 and 52 years with phenylketonuria, methylmalonic acidemia, or maple syrup urine disease attending an educational summer camp in 2008. Themes were identified after independent analysis of transcripts. Most participants were highly knowledgeable about their dietary requirements and some could describe their own specific negative experiences of nonadherence. Many reported specific challenges, such as feelings of being different, that they experienced in elementary and middle school. Friends and family play an important role in maintaining dietary adherence. Participants identified one registered dietitian in particular who has played an important supportive role. Insurance coverage for...Continue Reading

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Citations

Mar 9, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Susan A BerryStephen Cederbaum
Jan 11, 2016·Molecular Genetics and Metabolism·Gloria HoClara D M van Karnebeek
Mar 29, 2014·Molecular Genetics and Metabolism·Kathryn M CampJustin M Young
May 8, 2020·International Journal of Developmental Neuroscience : the Official Journal of the International Society for Developmental Neuroscience·Itiane Diehl de FranceschiClovis Milton Duval Wannmacher
Jun 7, 2013·International Journal of Adolescent Medicine and Health·Mark A ApplebaumEmily von Scheven
May 3, 2020·Journal of Patient-reported Outcomes·Katia Irie TeruyaIda Vanessa Doederlein Schwartz

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