Blau, N., van Spronsen, F. J., & Levy, H. L. (2010). Phenylketonuria. Lancet, 376(9750), 1417–1427. https://doi.org/10.1016/S0140-6736(10)60961-0.
Article
CAS
PubMed
Google Scholar
van Spronsen, F. J., & Bélanger-Quintana, B. (2011). Outcomes of phenylketonuria with relevance to follow-up. JIMD Report, 1, 49–55. https://doi.org/10.1007/8904_2011_16.
Article
Google Scholar
van Wegberg, A. M. J., MacDonald, A., Ahring, K., et al. (2017). The complete European guidelines on phenylketonuria: Diagnosis and treatment. Orphanet Journal of Rare Diseases, 12(1), 162. https://doi.org/10.1186/s13023-017-0685-2.
Article
PubMed
PubMed Central
Google Scholar
van Spronsen, F. J. (2010). Phenylketonuria: A 21st century perspective. Nature Reviews. Endocrinology, 6, 509–514. https://doi.org/10.1038/nrendo.2010.125.
Article
CAS
PubMed
Google Scholar
Prince, A. P., McMurry, M. P., & Buist, N. R. M. (1997). Treatment products and approaches for phenylketonuria: Improved palatability and flexibility demonstrate safety, efficacy and acceptance in US clinical trials. Journal of Inherited Metabolic Disease, 20(4), 486–498. https://doi.org/10.1023/a:1005337126669.
Article
CAS
PubMed
Google Scholar
Ahring, K., Bélanger-Quintana, A., Dokoupil, K., et al. (2010). Blood phenylalanine control in phenylketonuria: A survey of 10 European centres. European Journal of Clinical Nutrition, 65(2), 275–278. https://doi.org/10.1038/ejcn.2010.258.
Article
PubMed
Google Scholar
Antshel, K. M., Brewster, S., & Waisbren, S. E. (2004). Child and parent attributions in chronic pediatric conditions: Phenylketonuria (PKU) as an exemplar. Journal of Child Psychology and Psychiatry, 45(3), 622–630. https://doi.org/10.1111/j.1469-7610.2004.00251.x.
Article
PubMed
Google Scholar
Jurecki, E. R., Cederbaumb, S., Kopesky, J., et al. (2017). Adherence to clinic recommendations among patients with phenylketonuria in the United States. Molecular Genetics and Metabolism, 120, 190–197. https://doi.org/10.1016/j.ymgme.2017.01.001.
Article
CAS
PubMed
Google Scholar
Thimm, E., Schmidt, L. E., Heldt, K., & Spiekerkoetter, U. (2013). Health-related quality of life in children and adolescents with phenylketonuria: Unimpaired HRQoL in patients but feared school failure in parents. Journal of Inherited Metabolic Disease, 36, 767–772. https://doi.org/10.1007/s10545-012-9566-y.
Article
PubMed
Google Scholar
Walter, J. H., White, F. J., Hall, S. K., et al. (2002). How practical are recommendations for dietary control in phenylketonuria? Lancet., 360, 55–57. https://doi.org/10.1016/S0140-6736(02)09334-0.
Article
CAS
PubMed
Google Scholar
Walter, J. H., & White, F. J. (2004). Blood phenylalanine control in adolescents with PKU. International Journal of Adolescent Medicine and Health, 16(1), 41–45. https://doi.org/10.1515/IJAMH.2004.16.1.41.
Article
PubMed
Google Scholar
Vieira, T. A., Nalin, T., Krug, B. C., Bittar, C. M., Netto, C. B. O., & Schwartz, I. V. D. (2015). Adherence to treatment of phenylketonuria. JIEMS., 1–7. https://doi.org/10.1177/2326409815579861.
Vieira Neto, E., Maia Filho, H. S., Monteiro, C. B., et al. (2018). Quality of life and adherence to treatment in early-treated Brazilian phenylketonuria pediatric patients. Brazilian Journal of Medical and Biological Research, 51(2), 1–10. https://doi.org/10.1590/1414-431X20176709.
Article
Google Scholar
MacDonald, A., van Rijn, M., Feillet, F., et al. (2012). Adherence issues in inherited metabolic disorders treated by low natural protein diets. Annals of Nutrition & Metabolism, 61(4), 289–295. https://doi.org/10.1159/000342256.
Article
CAS
Google Scholar
MacDonald, A., Gokmen-Ozel, H., van Rijn, M., & Burgard, P. (2010). The reality of dietary compliance in the management of phenylketonuria. Journal of Inherited Metabolic Disease, 33, 665–670. https://doi.org/10.1007/s10545-010-9073-y.
Article
PubMed
Google Scholar
Mira, N. V. M., & Marquez, U. M. L. (2000). Importância do diagnóstico e tratamento da Fenilcetonúria. Rev Saúde Pública, 34(1), 86–96 http://wwwscielobr/pdf/rsp/v34n1/1387pdf Acessed 15 Jan 2019.
Article
CAS
Google Scholar
Gerend, M. A., Shepherd, M. A., & Shepherd, J. E. (2013). The multidimensional nature of perceived barriers: Global versus practical barriers to HPV vaccination. Health Psychology, 32(4), 361–369. https://doi.org/10.1037/a0026248.
Article
PubMed
Google Scholar
Lou, F., & Shang, S. (2017). Attitudes towards pain management in hospitalized cancer patients and their influencing factors. Chinese Journal of Cancer Research, 29(1), 75–85. https://doi.org/10.21147/j.issn.1000-9604.2017.01.09.
Article
PubMed
PubMed Central
Google Scholar
Yates, P. M., Edwards, H. E., Nash, R. E., et al. (2002). Barriers to effective cancer pain management: A survey of hospitalized cancer patients in Australia. Journal of Pain and Symptom Management, 23(5), 393–405. https://doi.org/10.1016/S0885-3924(02)00387-1.
Article
PubMed
Google Scholar
Becker, H., Stuifbergen, A. K., & Sands, D. (1991). Development of a scale to measure barriers to health promotion activities among persons with disabilities. American Journal of Health Promotion, 5(6), 449–454. https://doi.org/10.4278/0890-1171-5.6.449.
Article
CAS
PubMed
Google Scholar
Champion, V. L. (1988). Attitudinal variables related to intention, frequency and proficiency of breast self-examination in women 35 and over. Research in Nursing & Health, 11(5), 283–291. https://doi.org/10.1002/nur.4770110503.
Article
CAS
Google Scholar
Dehghani-Tafti, A., Mahmoodabad, S. S. M., Morowatisharifabad, M. A., et al. (2015). Determinants of self-Care in Diabetic Patients Based on health belief model. Global Journal of Health Science, 7(5), 33–42 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4803867/pdf/GJHS-7-33.pdf. Accessed 18 Jan 2019.
Article
Google Scholar
Dempster, N. R., Wildman, B. G., Masterson, T. L., & Omlor, G. J. (2017). Understanding treatment adherence with the health belief model in children with cystic fibrosis. Health Education & Behavior, 45(3), 435–443. https://doi.org/10.1177/1090198117736346.
Article
Google Scholar
Hershey, J. C., Morton, B. G., Davis, J. B., & Reichgott, M. J. (1980). Patient compliance with antihypertensive medication. American Journal of Public Health, 70(10), 1081–1089 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1619527/pdf/amjph00683-0043.pdf. Accessed 19 Feb 2019.
Article
CAS
Google Scholar
Hyman, R. B., Baker, S., Ephraim, R., Moadel, A., & Philip, J. (1994). Health belief model variables as predictors of screening mammography utilization. Journal of Behavioral Medicine, 17(4), 391–406. https://doi.org/10.1007/BF01858010.
Article
CAS
PubMed
Google Scholar
Dima, A. L., Schweitzer, A. M., Diaconiţǎ, R., Remor, E., & Wanless, R. S. (2013). Adherence to ARV medication in Romanian young adults: Self-reported behaviour and psychological barriers. Psychology, Health & Medicine, 18(3), 343–354. https://doi.org/10.1080/13548506.2012.722648.
Article
Google Scholar
Remor, E. (2011). Predictors of treatment difficulties and satisfaction with haemophilia therapy in adult patients. Haemophilia., 17, e901–e905. https://doi.org/10.1111/j.1365-2516.2011.02578.x.
Article
CAS
PubMed
Google Scholar
Rosenstock, I. M. (1974). The health belief model and preventive health behavior. Health Education Monographs, 2(4), 354–386. https://doi.org/10.1177/109019817400200405.
Article
Google Scholar
Rosenstock, I. M. (1974). Historical origins of the health belief model. Health Education Monographs, 2(4), 328–335. https://doi.org/10.1177/109019817400200403.
Article
Google Scholar
Tripp, M. K., Diamond, P. M., Vernon, S. W., Swank, P. R., Dolan Mullen, P., & Gritz, E. R. (2013). Measures of parents’ self-efficacy and perceived barriers to children’s sun protection: Construct validity and reliability in melanoma survivors. Health Education Research, 28(5), 828–842. https://doi.org/10.1093/her/cys114.
Article
PubMed
Google Scholar
de Vries, A. E., van der Wal, M. H. L., Nieuwenhuis, M. M. V., et al. (2013). Perceived barriers of heart failure nurses and cardiologists in using clinical decision support systems in the treatment of heart failure patients. BMC Medical Informatics and Decision Making, 13(54), 1–8 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651365/pdf/1472-6947-13-54.pdf. Accessed 21 Feb 2019.
Google Scholar
Ramezankhani, A., Soori, H., Alhani, F., & Goudarzi, A. M. (2015). Design and development of a scale of perceived barriers to self-care in patients with type 2 diabetes mellitus: An exploratory factor analysis. Electronic Physician, 7(7), 1486–1493. https://doi.org/10.19082/1486.
Article
PubMed
PubMed Central
Google Scholar
Almeida-Brasil, C. C., Nascimento, E., Silveira, M. R., Bonolo-Palmira, F., & Ceccato, M. G. B. (2019). New patient-reported outcome measure to assess perceived barriers to antiretroviral therapy adherence: The PEDIA scale. Cad Saúde Pública, 35(5), e00184218. https://doi.org/10.1590/0102-311x00184218.
Article
PubMed
Google Scholar
Bik-Multanowski, M., Didycz, B., Mozrzymas, R., et al. (2008). Quality of life in noncompliant adults with phenylketonuria after resumption of the diet. Journal of Inherited Metabolic Disease, 31(S2), 415–418. https://doi.org/10.1007/s10545-008-0978-7.
Article
Google Scholar
Bilginson, C., Waltzman, N., Leonard, C. O., & Ernst, S. L. (2005). Living with phenylketonuria: Perspectives of patients and their families. Journal of Inherited Metabolic Disease, 28, 639–649. https://doi.org/10.1007/s10545-005-4478-8.
Article
Google Scholar
Bosch, A. M., Burlina, A., Cunningham, A., et al. (2015). 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. https://doi.org/10.1186/s13023-015-0294-x.
Di Ciommo, V., Forcella, E., & Cotugno, G. (2012). Living with phenylketonuria from the point of view of children, adolescents, and young adults. Journal of Developmental and Behavioral Pediatrics, 33(3), 229–235. https://doi.org/10.1097/dbp.0b013e3182460d8a.
Article
PubMed
Google Scholar
Diesen, P. S., Wiig, I., Grut, L., & Kase, B. F. (2015). Betwixt and between being healthy and ill: The stigma experienced by young adults with phenylketonuria. Scandinavian Journal of Disability Research, 17(4), 321–334. https://doi.org/10.1080/15017419.2014.941003.
Article
Google Scholar
Ievers-Landis, C. E., Hoff, A. L., Brez, C., Cancilliere, M. K., Mcconnell, J., & Kerr, D. (2005). Situational analysis of dietary challenges of the treatment regimen for children and adolescents with phenylketonuria and their primary caregivers. Developmental and Behavioral Pediatrics, 26(3), 186–193.
Article
Google Scholar
Kemper, A. R., Brewer, C. A., & Singh, R. H. (2010). Perspectives on dietary adherence among women with inborn errors of metabolism. Journal of the American Dietetic Association, 110(2), 247–252. https://doi.org/10.1016/j.jada.2009.10.030.
Article
PubMed
Google Scholar
Sharman, R., Mulgrew, K., & Katsikitis, M. (2013). Qualitative analysis of factors affecting adherence to the phenylketonuria diet in adolescents. Clinical Nurse Specialist, 27(4), 205–210. https://doi.org/10.1097/nur.0b013e31829555d5.
Article
PubMed
Google Scholar
Vegni, E., Fiori, L., Riva, E., Giovannini, M., & Moja, E. A. (2009). How individuals with phenylketonuria experience their illness: An age-related qualitative study. Child: Care, Health and Development, 36(4), 539–548. https://doi.org/10.1111/j.1365-2214.2009.01000.x.
Article
Google Scholar
World Health Organization. Adherence to long-term therapies: Evidence for action 2003. http://www.who.int/chp/knowledge/publications/adherence_full_report.pdf. Accessed 15 Jan 2019.
Google Scholar
Wappner, R., Cho, S., Kronmal, R. A., Schuett, V., & Seashore, M. R. (1999). Management of Phenylketonuria for optimal outcome: A review of guidelines for phenylketonuria management and a report of surveys of parents, patients, and clinic directors. Pediatrics., 104(6), e68. https://doi.org/10.1542/peds.104.6.e68.
Article
CAS
PubMed
Google Scholar
Camp, K. M., Parisi, M. A., Acosta, P. B., et al. (2014). Phenylketonuria scientific review conference: State of the science and future research needs. Molecular Genetics and Metabolism, 112(2), 87–122. https://doi.org/10.1016/j.ymgme.2014.02.013.
Article
CAS
PubMed
Google Scholar
Shaughnessy, J., Zechmeister, E., & Zechmeister, J. (2014). Research methods in psychology (10th ed.). New York: McGraw-Hill.
Google Scholar
Wechsler, D. (2014). Escala Wechsler abreviada de inteligência – WASI: Manual / David Wechsler; adaptação e padronização Brasileira de Clarissa Marceli Trentini, Denise Balem Yates, Vanessa Stumpf heck. São Paulo: Casa do Psicólogo.
Google Scholar
Revicki, D. A., Osoba, D., Fairclough, D., Barofsky, I., Berzon, R., Leidy, N. K., & Rothman, M. (2000). Recommendations on health-related quality of life research to support labeling and promotional claims in the United States. Quality of Life Research, 9(8), 887–900. https://doi.org/10.1023/A:1008996223999.
Article
CAS
PubMed
Google Scholar
Frank, N., Fitzgerald, R., & Legge, M. (2007). Phenylketonuria – The lived experience. The New Zealand Medical Journal, 120(1262), U2728 https://www.nzma.org.nz/__data/assets/pdf_file/0006/17826/Vol-120-No-1262-21.September.2007.pdf. Accessed 02 Feb 2019.
PubMed
Google Scholar
MacCulloch, K., & Rashid, M. (2014). Factors affecting adherence to a gluten-free diet in children with celiac disease. Paediatrics & Child Health, 19(6), 305–309 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4173957/pdf/pch-19-305.pdf. Accessed 10 Fev 2019.
Article
Google Scholar
Rodrigues, M., Yonamine, G. H., & Satiro, C. A. (2018). Rate and determinants of non-adherence to a gluten-free diet and nutritional status assessment in children and adolescents with celiac disease in a tertiary Brazilian referral center: A cross sectional and retrospective study. BMC Gastroenterology, 18(15), 2–8. https://doi.org/10.1186/s12876-018-0740-z.
Article
Google Scholar
Bekhof, J., van Spronsen, F. J., Crone, M., van Rijn, M., Oudshoorn, C. G. M., & Verkerk, P. H. (2003). Influence of knowledge of the disease on metabolic control in phenylketonuria. European Journal of Pediatrics, 162, 440–442. https://doi.org/10.1007/s00431-003-1197-8.
Article
PubMed
Google Scholar
Rimal, R. N. (2000). Closing the knowledge-behavior gap in health promotion: The mediating role of self-efficacy. Health Communication, 12(3), 219–237. https://doi.org/10.1207/s15327027hc1203_01.
Article
CAS
PubMed
Google Scholar
Weglage, J., Fiinders, B., Wilken, B., et al. (1992). Psychological and social findings in adolescents with phenylketonuria. European Journal of Pediatrics, 151(7), 522–525. https://doi.org/10.1007/BF01957759.
Article
CAS
PubMed
Google Scholar