Primary ciliary dyskinesia and psychological well-being in adolescence
Autoři:
Selene Valero-Moreno aff001; Silvia Castillo-Corullón aff002; Inmaculada Montoya-Castilla aff001; Marián Pérez-Marín aff001
Působiště autorů:
Department of Personality, Assessment and Psychological Treatments, Faculty of Psychology, University of Valencia, Valencia, Spain
aff001; Pediatric Pneumology Unit, Hospital Clinico Universitario de Valencia, Valencia, Spain
aff002
Vyšlo v časopise:
PLoS ONE 15(1)
Kategorie:
Research Article
doi:
https://doi.org/10.1371/journal.pone.0227888
Souhrn
Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disease with low prevalence in pediatrics. Health studies have not sufficiently analyzed the role of psychological variables in rare diseases such as PCD. This paper studies the psychological characteristics of a group of pediatric patients diagnosed with PCD compared to their healthy peers. The sample consisted of 48 preadolescents-adolescents, aged 9–18 years (M = 12.96; SD = 2.71), with similar distribution by sex, and 25% of the patients having dyskinesia. Clinical anxiety-depression, self-esteem and psychological well-being were evaluated using questionnaires: the Adolescent Psychological Well-being Scale (BIEPS-J), the Hospital Anxiety and Depression Scale (HADS) and the Rosenberg Self-Esteem Scale (RSE). Data were analysed using descriptive, mean comparison (t-test) and diffuse comparative qualitative analysis (QCA). The results show no differences were found between healthy and PCD patients in the variables analyzed, except for social ties showing the latter greater well-being in this aspect. In QCA models, the variables that best explained the high or low levels of well-being were depression and self-esteem, and primary ciliary dyskinesia was not a necessary condition for presenting low levels of well-being. In conclusion, our results highlight the need to explore psychological aspects in pediatric patients with rare diseases.
Klíčová slova:
Adolescents – Anxiety – Depression – Emotions – Child health – Mental health and psychiatry – Pediatrics – Psychometrics
Zdroje
1. Desueza W, Latiff A. Hereditary lung diseases. Medicine (Baltimore) [Internet]. 2018;12(63):3719–25. Available from: https://doi.org/10.1016/j.med.2018.09.013
2. Escribano A, Armengot Carceller M. Discinesia ciliar primaria. In: Tratado de pediatría. Editorial. Madrid; 2014. p. 514–20.
3. Leigh MW, Ferkol TW, Davis SD, Lee HS, Rosenfeld M, Dell SD, et al. Clinical features and associated likelihood of primary ciliary dyskinesia in children and adolescents. Ann Am Thorac Soc. 2016;13(8):1305–13. doi: 10.1513/AnnalsATS.201511-748OC 27070726
4. Morgan LC, Birman CS. The impact of Primary Ciliary Dyskinesia on the upper respiratory tract. Paediatr Respir Rev [Internet]. 2016;18:33–8. Available from: http://dx.doi.org/10.1016/j.prrv.2015.09.006 26898410
5. Lucas JS, Barbato A, Collins SA, Goutaki M, Behan L, Caudri D, et al. European Respiratory Society guidelines for the diagnosis of primary ciliary dyskinesia. Eur Respir J [Internet]. 2017;49. Available from: http://dx.doi.org/10.1183/13993003.01090-2016
6. Leigh MW, Horani A, Kinghorn B, Connor MGO. Primary ciliary dyskinesia (PCD): A genetic disorder of motile cilia. Transl Sci Rare Dis. 2019;4:51–75. doi: 10.3233/TRD-190036 31572664
7. Hosie PH, Fitzgerald DA, Jaffe A, Birman CS, Rutland J, Morgan LC. Presentation of primary ciliary dyskinesia in children: 30 years’ experience. J Paediatr Child Health. 2015;51(7):722–6. doi: 10.1111/jpc.12791 25510893
8. Goutaki M, Meier AB, Halbeisen FS, Lucas JS, Dell SD, Maurer E, et al. Clinical manifestations in primary ciliary dyskinesia : systematic review and meta-analysis. Eur Respir J [Internet]. 2016;58:1081–95. Available from: http://dx.doi.org/10.1183/13993003.00736-2016
9. Shapiro AJ, Zariwala MA, Ferkol T, Davis SD, Sagel SD, Dell SD, et al. State of the Art Diagnosis, Monitoring, and Treatment of Primary Ciliary Dyskinesia: PCD Foundation Consensus Recommendations Based on State of the Art Review. 2016;132(September 2015):115–32.
10. Mullins AJ, Gamwell KL, Sharkey CM, Bakula DM, Tackett AP, Suorsa KI, et al. Illness uncertainty and illness intrusiveness as predictors of depressive and anxious symptomology in college students with chronic illnesses. J Am Coll Heal [Internet]. 2017;65(5):352–60. Available from: http://dx.doi.org/10.1080/07448481.2017.1312415
11. Broadbent E, Wilkes C, Koschwanez H, Weinman J, Norton S, Petrie KJ. A systematic review and meta-analysis of the Brief Illness Perception Questionnaire. Psychol Heal. 2015;30(11):1361–85.
12. Sicouri G, Sharpe L, Hudson J, Dudeney J, Jaffe A, Selvadurai H, et al. Parent-child interactions in children with asthma and anxiety. Vol. 97, Behaviour Research and Therapy. 2017.
13. Catastini P, Di Marco S, Furriolo M, Genovese C, Grande A, Iacinti E, et al. The Prevalence of Anxiety and Depression in Italian Patients With Cystic Fibrosis and Their Caregivers. Pediatric. 2016;41:1311–9.
14. Secinti E, Thompson EJ, Richards M, Gaysina D. Research Review: Childhood chronic physical illness and adult emotional health—a systematic review and meta-analysis. J Child Psychol Psychiatry Allied Discip. 2017;58(7):753–69.
15. Carotenuto M, Esposito M, Di Pasquale F, De Stefano S. Psychological, cognitive and maternal stress assessment in children with primary ciliary dyskinesia. 2013;9(4).
16. Dudeney J, Sharpe L, Jaffe A, Jones EB, Hunt C. Anxiety in youth with asthma: A meta-analysis. Pediatr Pulmonol. 2017;52(9):1121–9. doi: 10.1002/ppul.23689 28749088
17. Akkus PZ, Hizal MG, Bahadur EI, Ozmert EN, Polat SE, Ozdemir G. Developmental and behavioral problems in preschool-aged primary ciliary dyskinesia patients American Academy of Pediatrics. Eur J Pediatr. 2019;178:995–1003. doi: 10.1007/s00431-019-03382-z 31030258
18. Behan L, Rubbo B, Lucas JS, Galvin AD. The patient ‘ s experience of primary ciliary dyskinesia: a systematic review. Qual Life Res. 2017;26(9):2265–85. doi: 10.1007/s11136-017-1564-y 28361274
19. Pinquart M. Self-esteem of children and adolescents with chronic illness: a meta-analysis. Child Care Health Dev. 2013 Mar;39(2):153–61. doi: 10.1111/j.1365-2214.2012.01397.x 22712715
20. Habib AR, Manji J, Wilcox PG, Javer AR, Buxton JA, Quon BS. Systematic Review of Factors Associated with Health-Related Quality of Life in Adolescents and Adults with Cystic Fibrosis. Ann Am Thorac Soc. 2015;12(3).
21. Askew AK, Bamford AJ, Hudson BN, Moratelli BJ, Miller BR, Anderson CA, et al. Current characteristics, challenges and coping strategies of young people with cystic fibrosis as they transition to adulthood. Clin Med (Northfield Il). 2017;17(2):121–5.
22. Casullo M, Castro A. Evaluación del bienestar psicológico en estudiantes adolescentes Argentinos. = Psychological assessment of psychological well being in Argentine adolescent students. Rev Psicol [Internet]. 2000;18(1):35–67. Available from: http://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2000-16778-002&site=ehost-live&scope=site
23. González-Fuentes M, Andrade P. Escala de Bienestar Psicológico para adolescentes. Rev Iberoam Diagnóstico y Evaluación [Internet]. 2016;2:39–48. Available from: http://www.aidep.org/sites/default/files/articles/R42/Art9.pdf
24. Cruz MS, Maganto C, Montoya I, González R. Escala de bienestar psicológico para adolescentes. In: Casullo M., Brenlla A, CS M, Cruz R, González R, Maganto C, et al., editors. Evaluación del bienestar psicológico en Iberoamérica. Buenos Aires: Paidos; 2002. p. 65–27.
25. Rosenberg R. Society and the adolescent self-image. Princeton: NJ: Princeton University Press.; 1965.
26. Atienza FL, Moreno Y, Balaguer I. Análisis de la dimensionalidad de la Escala de Autoestima de Rosenberg en una muestra de adolescentes valencianos. Vol. 22, Rev Psicol Universitas Tarraconensis. 2000. 29–42 p.
27. Oliva A, Antolín L, Pertegal M, Ríos M, Parra Á, Hernando Á, et al. Instrumentos para la evaluación de la salud mental y el desarrollo positivo adolescente y los activos que lo promueven. [Internet]. Junta de Andalucía. Consejería de Salud; 2011. https://www.repositoriosalud.es/bitstream/10668/2483/1/Oliva_DesarrolloPositivo_Instrumentos.pdf
28. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983 Jun;67(6):361–70. doi: 10.1111/j.1600-0447.1983.tb09716.x 6880820
29. De Las Cuevas C, García-Estrada A, González de Rivera J. Hospital Anxiety and Depression Scale" y Psicopatología Afectiva. An Psiquiatr. 1995;11(4):126–30.
30. Saez-Flores E, Tonarely NA, Barker DH, Quittner AL. Examining the Stability of the Hospital Anxiety and Depression Scale Factor Structure in Adolescents and Young Adults With Cystic Fibrosis: A Confirmatory Factor Analysis. J Pediatr Psychol. 2018 Jul;43(6):625–35. doi: 10.1093/jpepsy/jsx155 29309626
31. Valero-Moreno S, Lacomba-Trejo L, Casaña-Granell S, Prado-Gascó V-J, Montoya-Castilla I, Pérez-Marín M. Factorial structure of the Hospital Anxiety and Depression Scale in adolescent patients with chronic disease. Arch Argent Pediatr. 2019;117.
32. Mihalca AM, Pilecka W. The factorial structure and validity of the Hospital Anxiety and Depression Scale (HADS) in Polish adolescents. Psychiatr Pol. 2015;49(5):1071–88. doi: 10.12740/PP/38139 26688854
33. Valero-Moreno S, Lacomba-trejo L, Casaña-granell S, Prado-Gascó VJ, Montoya‐Castilla I, Pérez-Marín M. Factor structure of the Hospital Anxiety and Depression Scale in adolescent patients with chronic disease. Arch Argent Pediatr. 2019;117(4):252–8. doi: 10.5546/aap.2019.eng.252 31339268
34. Claude R, Christopher R. Acq [Computer Programme]. Houston, TX: University of Houston-Downtown.; 2014.
35. Woodside AG. Moving beyond multiple regression analysis to algorithms: Calling for adoption of a paradigm shift from symmetric to asymmetric thinking in data analysis and crafting theory. J Bus Res [Internet]. 2013;66(4):463–72. Available from: http://dx.doi.org/10.1016/j.jbusres.2012.12.021
36. Ragin CC. Redesigning Social Inquiry: Fuzzy sets and beyond. Chicago: University of Chicago Press.; 2008.
37. Eng S, Woodside AG. Configural analysis of the drinking man: Fuzzy-set qualitative comparative analyses. Addict Behav [Internet]. 2012;37(4):541–3. Available from: http://dx.doi.org/10.1016/j.addbeh.2011.11.034 22178601
38. Fiss PC. Building Better Causal Theories: A Fuzzy Set Approach to Typologies in Organizational Research. Acad Manag J. 2011;54(2):393–420.
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