Adherence to the treatment regimen and causes of its violation in children with cystic fibrosis

Authors

DOI:

https://doi.org/10.15574/SP.2023.134.84

Keywords:

cystic fibrosis, children, violation of treatment recommendations, Eating attitude test EAT-26, nutritional status

Abstract

Medical dietary therapy (MDT) is aimed at preventing complications related to both the chronic disease itself and complications that may develop into separate nosological forms as a result of non-compliance with such recommendations. At the same time, adherence to MDT recommendations among children is quite low, despite the adverse consequences of non-adherence to therapy. These difficulties determine the need for additional counseling by behavioral pediatricians and psychologists.

Purpose - to study the degree of adherence to dietary recommendations and pancreatic enzyme replacement therapy in children with cystic fibrosis (CF) in Kyiv and the Kyiv region, and the impact on anthropometric indicators, length of hospitalization, and the probability of respiratory tract colonization by Ps. aeruginosa.

Materials and methods. Interviews were conducted with 17 children with cystic CF aged 5 to 17 years, as well as their parents. Children and parents were asked to fill out the EAT-26 food attitude questionnaire. All interviewed patients were assessed for nutritional status and sputum culture. Patients were divided into 3 groups depending on the completeness of compliance with the recommendations.

Results. According to the general results of the survey, only 47% of all patients are sure that they fully followed the recommendations. Children with CF who did not regularly or substandardly consume specialized food mixtures had a higher percentage of respiratory tract colonization by Ps. aeruginosa, stayed longer in the hospital, and some of them had nutritional disorders. According to the EAT-26 questionnaire and a face-to-face interview, it was established that children with CF form their attitude to eating through the prism of the perception of the diagnosis. The daily “burden of the disease” and the additional responsibilities associated with it are reflected in the patients’ answers.

Conclusions. An important component of the work with children with CF is the determination of reduced adherence to diet therapy. EAT-26 testing can be useful for identifying the most significant factors that require correction in a specific child by members of a multidisciplinary team (pediatrician, nutritionist, psychologist). The research was carried out in accordance with the principles of the Declaration of Helsinki. Informed consent of the child’s parents was obtained for the research.

No conflict of interests was declared by the authors.

References

Ashkenazi M, Nathan N, Sarouk I, Aluma BEB, Dagan A, Bezalel Y et al. (2019). Nutritional Status in Childhood as a Prognostic Factor in Patients with Cystic Fibrosis. Lung. 197: 371-376. https://doi.org/10.1007/s00408-019-00218-3; PMid:30887107

Barker DH, Quittner AL. (2016). Parental Depression and Pancreatic Enzymes Adherence in Children With Cystic Fibrosis. Pediatrics. 137 (2): e20152296. https://doi.org/10.1542/peds.2015-2296; PMid:26738883 PMCid:PMC4732358

Benoit CM, Christensen E, Nickel AJ, Shogren S, Johnson M, Thompson EF, McNamara J. (2020). Objective Measures of Vest Therapy Adherence Among Pediatric Subjects With Cystic Fibrosis. Respiratory care. 65 (12): 1831-1837. https://doi.org/10.4187/respcare.07421; PMid:32636276

Bonfim BS, de Melo Filho VM, Fontenelle FM, Souza EL. (2020). Treatment adherence among children and adolescents in a cystic fibrosis reference center. Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo. 38: e2018338. https://doi.org/10.1590/1984-0462/2020/38/2018338; PMid:32520296 PMCid:PMC7274532

Bregnballe V, Schiotz PO, Boisen KA et al. (2011). Barriers to adherence in adolescents and young adults with cystic fibrosis: a questionnaire study in young patients and their parents. Patient Prefer Adherence. 5: 507-515. https://doi.org/10.2147/PPA.S25308; PMid:22114464 PMCid:PMC3218111

Burker EJ, Sedway J, Carone S. (2004). Psychological and educational factors: better predictors of work status than FEV1 in adults with cystic fibrosis. Pediatr Pulmonol. 38: 413-418. https://doi.org/10.1002/ppul.20090; PMid:15470683

Crist W, Napier-Phillips A. (2001). Mealtime behaviors of young children: a comparison of normative and clinical data. Journal of developmental and behavioral pediatrics : JDBP. 22 (5): 279-286. https://doi.org/10.1097/00004703-200110000-00001; PMid:11718230

Ferreira DP, Chaves CRMM, Costa ACCD. (2019). Adherence of adolescents with cystic fibrosis to enzyme replacement therapy: associated factors. Ciencia & saude coletiva. 24 (12): 4717-4726. https://doi.org/10.1590/1413-812320182412.31622017; PMid:31778521

Flores JS, Teixeira FA, Rovedder PM et al. (2013). Adherence to airway clearance therapies by adult cystic fibrosis patients. Respir Care. 58: 279-285. Epub 2012/07/12. https://doi.org/10.4187/respcare.01389; PMid:22782067

Garner DM. (2023). The Eating Attitudes Test (EAT-26). URL: https://www.eat-26.com/.

Goodfellow NA, Hawwa AF, Reid AJ, Horne R, Shields MD, McElnay JC. (2015). Adherence to treatment in children and adolescents with cystic fibrosis: a cross-sectional, multi-method study investigating the influence of beliefs about treatment and parental depressive symptoms. BMC pulmonary medicine. 15: 43. https://doi.org/10.1186/s12890-015-0038-7; PMid:25927329 PMCid:PMC4417214

Mackner LM, McGrath AM, Stark LJ. (2001). Dietary recommendations to prevent and manage chronic pediatric health conditions: adherence, intervention, and future directions. Journal of developmental and behavioral pediatrics : JDBP. 22 (2): 130-143. https://doi.org/10.1097/00004703-200104000-00008; PMid:11332783

Modi AC, Quittner AL. (2006). Barriers to treatment adherence for children with cystic fibrosis and asthma: what gets in the way? J Pediatr Psychol. 31: 846-858. https://doi.org/10.1093/jpepsy/jsj096; PMid:16401680

Nicolais CJ, Bernstein R, Saez-Flores E, McLean KA, Riekert KA, Quittner AL. (2019). Identifying Factors that Facilitate Treatment Adherence in Cystic Fibrosis: Qualitative Analyses of Interviews with Parents and Adolescents. Journal of clinical psychology in medical settings. 26 (4): 530-540. https://doi.org/10.1007/s10880-018-9598-z; PMid:30790101

Oates GR, Stepanikova I, Gamble S et al. (2015). Adherence to airway clearance therapy in pediatric cystic fibrosis: socioeconomic factors and respiratory outcomes. Pediatr Pulmonol. 50: 1244-1252. https://doi.org/10.1002/ppul.23317; PMid:26436321 PMCid:PMC4871693

Parkins MD, Somayaji R, Waters VJ. (2018). Epidemiology, Biology, and Impact of Clonal Pseudomonas aeruginosa Infections in Cystic Fibrosis. Clinical microbiology reviews. 31 (4): e00019-18. https://doi.org/10.1128/CMR.00019-18; PMid:30158299 PMCid:PMC6148191

Poulimeneas D, Grammatikopoulou MG, Petrocheilou A, Kaditis AG, Vassilakou T. (2020, Dec 4). Triage for Malnutrition Risk among Pediatric and Adolescent Outpatients with Cystic Fibrosis, Using a Disease-Specific Tool. Children (Basel). 7 (12): 269. https://doi.org/10.3390/children7120269; PMid:33291524 PMCid:PMC7761802

Saiman L, Siegel J. (2003). Infection Control Recommendations for Patients With Cystic Fibrosis: Microbiology, Important Pathogens, and Infection Control Practices to Prevent Patient-to-Patient Transmission. Infect. Control Hosp. Epidemiol. 24: S6-S52. https://doi.org/10.1086/503485; PMid:12789902

Shakkottai A, Kidwell KM, Townsend M, Nasr SZ. (2015). A five-year retrospective analysis of adherence in cystic fibrosis. Pediatric Pulmonology. 50 (12): 1224-1229. https://doi.org/10.1002/ppul.23307; PMid:26346919

Simon SL, Duncan CL, Horky SC, Nick TG, Castro MM, Riekert KA. (2011). Body satisfaction, nutritional adherence, and quality of life in youth with cystic fibrosis. Pediatric pulmonology. 46 (11): 1085-1092. https://doi.org/10.1002/ppul.21477; PMid:21626713

Stark LJ, Opipari-Arrigan L, Filigno SS, Simon SL, Leonard A, Mogayzel PJ et al. (2016). Web-Based Intervention for Nutritional Management in Cystic Fibrosis: Development, Usability, and Pilot Trial. Journal of pediatric psychology. 41 (5): 510-521. https://doi.org/10.1093/jpepsy/jsv108; PMid:26582520 PMCid:PMC4888111

Yen EH, Quinton H, Borowitz D. (2013). Better nutritional status in early childhood is associated with improved clinical outcomes and survival in patients with cystic fibrosis. J Pediatr. 162 (3): 530-535.e1. https://doi.org/10.1016/j.jpeds.2012.08.040; PMid:23062247

Young C, Campolonghi S, Ponsonby S, Dawson SL, O'Neil A, Kay-Lambkin F et al. (2019). Supporting Engagement, Adherence, and Behavior Change in Online Dietary Interventions. Journal of nutrition education and behavior. 51 (6): 719-739. https://doi.org/10.1016/j.jneb.2019.03.006; PMid:31036500

Published

2023-10-28

Issue

Section

Original articles