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. |