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Table 1 Articles chosen from the literature to guide the questionnaire item construction

From: Development of an inventory to assess perceived barriers related to PKU treatment

Authors (year of publication) Article’s title Journal, vol., pages
Bik-Multanowski et al. (2008) [34] Quality of life in noncompliant adults with phenylketonuria after resumption of the diet. Journal of Inherited Metabolic Disease, 31, 415–418.
Bilginsoy et al. (2005) [35] Living with phenylketonuria: Perspectives of patients and their families. Journal of Inherited Metabolic Disease, 28, 639–649.
Bosch et al. (2015) [36] Assessment of the impact of phenylketonuria and its treatment on quality of life of patients and parents from seven European countries. Orphanet Journal of Rare Diseases, 10, 80–94
Di Ciommo et al. (2012) [37] Living with Phenylketonuria from the point of view of children, adolescents, and young adults: a qualitative study. Journal of Developmental and Behavioral Pediatrics, 33, 229–235.
Diesen et al. (2015) [38] Betwixt and between being healthy and ill: the stigma experienced by young adults with phenylketonuria. Scandinavian Journal of Disability Research, 17, 321–334.
Ievers-Landis et al. (2005) [39] Situational analysis of dietary challenges of the treatment regimen for children and adolescents with phenylketonuria and their primary caregivers. Developmental and Behavioral Pediatrics, 26, 186–193.
Kemper et al. (2010) [40] Perspectives on Dietary Adherence among Women with Inborn Errors of Metabolism. Journal of American Dietetic Association, 110, 247–252
MacDonald et al. (2010) [15] The reality of dietary compliance in the management of phenylketonuria. Journal of Inherited Metabolic Disease, 33, 665–670.
MacDonald et al. (2012) [14] Adherence Issues in Inherited Metabolic Disorders Treated by Low Natural Protein Diets. Annals of Nutrition and Metabolism, 61, 289–295.
Sharman et al. (2013) [41] Qualitative Analysis of Factors Affecting Adherence to the Phenylketonuria Diet in Adolescents. Clinical Nurse Specialist, 27, 205–210.
Vegni et al. (2009) [42] How individuals with phenylketonuria experience their illness: an age-related qualitative study. Child: care, health and development, 36, 539–548.
Vieira et al. (2015) [12] Adherence to Treatment of Phenylketonuria: A Study in Southern Brazilian Patients. Journal of Inborn Errors of Metabolism & Screening, 3, 1–7.