Self-care capacity of adult cystic fibrosis patients during transition/transfer between services
DOI:
https://doi.org/10.23938/ASSN.1084Keywords:
Cystic fibrosis, Self-care, Transition to adult care, Continuity of patient careAbstract
Background. To analyze the knowledge, abilities, and emotional state of cystic fibrosis patients during a specific follow-up period and compare this with the recall they had of the transition (planned and gradual shift from the pediatric unit) / transfer (direct change skipping the steps recommended by the guidelines) to a specialized cystic fibrosis adult unit.
Methods. Prospective cross-sectional study with cystic fibrosis adult patients under follow-up in a specialist consultation. Group 1 were patients who transitioned and Group 2 were transferred patients. The following information was collected: sociodemographic variables, degree of knowledge, skills, and emotional state using a survey designed for this purpose (as part of the internal consistency validation process). Participants also completed the emotional subscale of Cystic Fibrosis Questionnaire-Revised. Inter-group comparisons were made for the transition/transfer, at the follow-up, and during the evolution.
Results. Thirty-five patients were analyzed; 65.8% male; mean age 31.9 years (SD =10.1). At the transition, Group 1 (n=19; 54.3%) had greater knowledge about their medication and reduced ability to manage appointments and making decisions in comparison to Group 2 at transfer. At follow-up, Group 1 made a better report on their emotional state and significantly improved their ability to manage appointments, communication, and decision-making.
Conclusions. Patients who were moved to an adult cystic fibrosis unit through transition were more knowledgeable about their medications. However, those who were transferred managed their appointments and decision-making better, but felt sadder.
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References
BELL SC, MALL MA, GUTIERREZ H, MACEK M, MADGE S, DAVIES JC et al. The future of cystic fibrosis care: a global perspective. Lancet Respir Med 2020; 8: 65-124. https://doi.org/10.1016/s2213-2600(19)30337-6
CASTELLANI C, DUFF AJA, BELL SC, HEIJERMAN HGM, MUNCK A, RATJEN F et al. ECFS best practice guidelines: the 2018 revision. J Cyst Fibros 2018; 17: 153-178. https://doi.org/10.1016/j.jcf.2018.02.006
European Cystic Fibrosis Society. Patient registry: Annual data report 2020 data. https://www.ecfs.eu/sites/default/files/ECFSPR_Report_2020_v1.0%20%2807Jun2022%29_website.pdf
NAZARETH D, WALSHAW M. Coming of age in cystic fibrosis - transition from paediatric to adult care. Clin Med 2013; 13: 482-486. https://doi.org/10.7861/clinmedicine.13-5-482
OFFICE D, HEERES I. Transition from paediatric to adult care in cystic fibrosis. Breathe (Sheff) 2022; 18: 210157. https://doi.org/10.1183/20734735.0157-2021
ROSEN DS, BLUM RW, BRITTO M, SAWYER SM, SIEGEL DM, Society for Adolescent Medicine. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health 2003; 33: 309-311. https://doi.org/10.1016/s1054-139x(03)00208-8
PATEL A, DOWELL M, GILES BL. Current concepts of transition of care in cystic fibrosis. Pediatr Ann 2017; 46: e188-e192. https://doi.org/10.3928/19382359-20170425-02
American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110: 1304-1306.
STRAUS EJ. Challenges in measuring healthcare transition readiness: taking stock and looking forward. J Pediatr Nurs 2019; 46: 109-117. https://doi.org/10.1016/j.pedn.2019.03.016
COYNE I, SHEEHAN AM, HEERY E, WHILE AE. Improving transition to adult healthcare for young people with cystic fibrosis: A systematic review. J Child Health Care 2017; 21: 312-330. https://doi.org/10.1177/1367493517712479
RATJEN F, BELL SC, ROWE SM, GOSS CH, QUITTNER AL, BUSH A. Cystic fibrosis. Nat Rev Dis Primers 2015; 1: 15010. https://doi.org/10.1038/nrdp.2015.10
SAWICKI GS, SELLERS DE, ROBINSON WM. High treatment burden in adults with cystic fibrosis: challenges to disease self-management. J Cyst Fibros 2009; 8: 91-96. https://doi.org/10.1016/j.jcf.2008.09.007
QUITTNER AL, GOLDBECK L, ABBOTT J, DUFF A, LAMBRECHT P, SOLÉ A et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax 2014; 69: 1090-1097. https://doi.org/10.1136/thoraxjnl-2014-205983
OLVEIRA C, SOLE A, GIRÓN RM, QUINTANA-GALLEGO E, MONDEJAR P, BARANDA F et al. Depression and anxiety symptoms in Spanish adult patients with cystic fibrosis: associations with health-related quality of life. Gen Hosp Psychiatry 2016; 40: 39-46. https://doi.org/10.1016/j.genhosppsych.2016.02.002
FARRELL PM, WHITE TB, REN CL, HEMPSTEAD SE, ACCURSO F, DERICHS N et al. Diagnosis of cystic fibrosis: consensus guidelines from the Cystic Fibrosis Foundation. J Pediatr 2017; 181S: S4-S15.e1. https://doi.org/10.1016/j.jpeds.2016.09.064
RICKHAM PP. Human experimentation. Code of ethics of the World Medical Association. Declaration of Helsinki. Br Med J 1964; 2: 177.
MOYNIHAN M, SAEWYC E, WHITEHOUSE S, PAONE M, MCPHERSON G. Assessing readiness for transition from paediatric to adult health care: Revision and psychometric evaluation of the Am I ON TRAC for Adult Care questionnaire. J Adv Nurs 2015; 71: 1324-1335. https://doi.org/10.1111/jan.12617
STAHL K, STEINKAMP G, ULLRICH G, SCHULZ W, VAN KONINGSBRUGGEN-RIETSCHEL S, HEUER HE et al. Patient experience in cystic fibrosis care: Development of a disease-specific questionnaire. Chronic Illn 2015; 1: 108-125. https://doi.org/10.1177/1742395314542051
Cystic Fibrosis Transition Advisory Council. CFR.I.S.E. Cystic fibrosis milestones for children & young adults. [Consultado el 3 de enero de 2024]. https://www.cfrise.com/cystic-fibrosis-milestones
TOWNS SJ, BELL SC. Transition of adolescents with cystic fibrosis from paediatric to adult care. Clin Respir J 2011; 5: 64-75. https://doi.org/10.1111/j.1752-699x.2010.00226.x
GONZÁLEZ F, ROIZEN M, RODRÍGUEZ CELIN MLM, DE CUNTO C, EYMANN A, MATO R et al. Validation of the Argentine Spanish version of Transition Readiness Assessment Questionnaire for adolescents with chronic conditions. Arch Argent Pediatr 2017; 115: 18-27. https://doi.org/10.5546/aap.2017.eng.18
OLVEIRA G, OLVEIRA C, GASPAR I, CRUZ I, DORADO A, PÉREZ-RUIZ E et al. Validation of the Spanish version of the Revised Cystic Fibrosis Quality of Life Questionnaire in adolescents and adults (CFQR 14+ Spain). Arch Bronconeumol 2010; 46: 165-175. https://doi.org/10.1016/j.arbres.2010.01.006
CARVAJAL A, CENTENO C, WATSON R, MARTÍNEZ M, RUBIALES AS. ¿Cómo validar un instrumento de medida de la salud? An Sist Sanit Navar 2011; 34: 63-72. https://doi.org/10.4321/s1137-66272011000100007
CRONLY J, SAVAGE E. Developing agency in the transition to self-management of cystic fibrosis in young people. J Adolesc 2019; 75: 130-137. https://doi.org/10.1016/j.adolescence.2019.07.006
LAPP V, CHASE SK. How do youth with cystic fibrosis perceive their readiness to transition to adult healthcare compared to their caregivers’ views? J Pediatr Nurs 2018; 43: 104-110. https://doi.org/10.1016/j.pedn.2018.09.012
KOCH G, WAKEFIELD BJ, WAKEFIELD DS. Barriers and facilitators to managing multiple chronic conditions: a systematic literature review. West J Nurs Res 2015; 37: 498-516. https://doi.org/10.1177/0193945914549058
GABILONDO A, ROJAS-FARRERAS S, VILAGUT G, HARO JM, FERNÁNDEZ A, PINTO-MEZA A et al. Epidemiology of major depressive episode in a southern European country: results from the ESEMeD-Spain project. J Affect Disord 2010; 120: 76-85. https://doi.org/10.1016/j.jad.2009.04.016
Sociedad Española de Fibrosis Quística. Registro Español de Fibrosis Quística: Informe anual 2021. https://fibrosisquistica.org/wp-content/uploads/2023/10/Registro-FQ-informe-2021.pdf
Instituto Nacional de Estadística. Nivel de formación de la población adulta. [Consultado el 3 de enero de 2024]. https://www.ine.es/ss/Satellite?L=es_ES&c=INESeccion_C&cid=1259925481659&p=1254735110672&pagename=ProductosYServicios%2FPYSLayout¶m1=PYSDetalle¶m3=1259924822888
Instituto Nacional de Estadística. Parados. [Consultado el 3 de enero de 2024]. https://www.ine.es/dynt3/inebase/es/index.htm?padre=811&capsel=815
CHAPADOS P, ARAMIDEH J, LAMORE K, DUMONT É, LUGASI T, CLERMONT MJ et al. Getting ready for transition to adult care: Tool validation and multi-informant strategy using the Transition Readiness Assessment Questionnaire in pediatrics. Child Care Health Dev 2021; 47: 645-653. https://doi.org/10.1111/cch.12872
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