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European Child & Adolescent Psychiatry

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01-02-2009 | ORIGINAL CONTRIBUTION

Adherence and psychopathology in children and adolescents with cystic fibrosis

Authors: Prof. Tonya White, MD, Prof. Judith Miller, PhD, Gail L. Smith, BS, Prof. William M. McMahon, MD

Published in: European Child & Adolescent Psychiatry | Issue 2/2009

Abstract

Background

The striking increase in the lifespan of individuals with cystic fibrosis (CF) has largely been attributed to the dramatic improvements in treatment regimens. These treatments are time intensive and may interfere with healthy development and family function. The objective of this study was to investigate the association between psychopathology and treatment adherence in children and adolescents with CF.

Methods

Structured psychiatric interviews were performed on 52 patients with CF. Additional information on family function and youth behaviors were also collected. Youth and parent reports of adherence to the CF treatments were obtained and compared with the CF teams’ records.

Results

The mean overall adherence to the CF teams’ recommendations was 77–81% for the child and parent reports, respectively. Children with anxiety disorders and families who were more cohesive showed significantly higher rates of adherence to the CF treatments. In addition, children in families with a balance of structure and flexibility also report higher levels of adherence to the CF treatments.

Conclusions

Anxiety disorders in children with CF may be associated with increased adherence to the numerous CF treatment regimens. In addition, family patterns that are cohesive and balanced are better able to incorporate the CF treatments into family life.

cystic fibrosis foundation: patient registry 2006 annual report. (2006) Cystic Fibrosis Foundation, Bethesda (http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003148/frame.html)

Abbott J, Dodd M, Bilton D, Webb AK (1994) Treatment compliance in adults with cystic fibrosis. Thorax 49:115–120PubMedCrossRef

Achenbach TM (1991) Manual for the child behavior checklist/4–18 and 1991 profile. University of Vermont, Department of Psychiatry, Burlington

Achenbach TM, Edelbrock CS (1983) Manual for the child behavior profile. University of Vermont, Department of Psychiatry, Burlington

Allan JL, Townley RR, Phelan PD (1974) Family response to cystic fibrosis. Aust Paediatr J 10:136–146PubMed

Bartholomew LK, Parcel GS, Seilheimer DK, Czyzewski D, Spinelli SH, Congdon B (1991) Development of a health education program to promote the self-management of cystic fibrosis. Health Educ Q 18:429–443PubMed

Bernard RS, Cohen LL (2004) Increasing adherence to cystic fibrosis treatment: a systematic review of behavioral techniques. Pediatr Pulmonol 37:8–16PubMedCrossRef

Blair C, Cull A, Freeman CP (1994) Psychosocial functioning of young adults with cystic fibrosis and their families. Thorax 49:798–802PubMedCrossRef

Bregnballe V, Thastum M, Schiotz PO (2007) Psychosocial problems in children with cystic fibrosis. Acta Paediatr 96:58–61PubMedCrossRef

10.

Burrows JA, Bunting JP, Masel PJ, Bell SC (2002) Nebulised dornase alpha: adherence in adults with cystic fibrosis. J Cyst Fibros 1:255–259PubMedCrossRef

11.

Bywater EM (1981) Adolescents with cystic fibrosis: psychosocial adjustment. Arch Dis Child 56:538–543PubMedCrossRef

12.

Colin AA, Wohl ME (1994) Cystic fibrosis. Pediatr Rev 15:192–200PubMedCrossRef

13.

Conway SP, Pond MN, Hamnett T, Watson A (1996) Compliance with treatment in adult patients with cystic fibrosis. Thorax 51:29–33PubMedCrossRef

14.

Cytryn L, Moore P, Robinson ME (1973) Psychological adjustment of children with cystic fibrosis. In: E. James Anthony, Cyrille Koupernik (eds) The child in his family. Wiley, New York, pp 37–47

15.

Czajkowski DR, Koocher GP (1987) Medical compliance and coping with cystic fibrosis. J Child Psychol Psychiatry 28:311–319PubMedCrossRef

16.

DeLambo KE, Ievers-Landis CE, Drotar D, Quittner AL (2004) Association of observed family relationship quality and problem-solving skills with treatment adherence in older children and adolescents with cystic fibrosis. J Pediatr Psychol 29:343–353PubMedCrossRef

17.

Drell MJ, White T (2005) Children’s reaction to illness and hospitalization. In: Sadock HIKaV (ed) Kaplan & Sadock’s Comprehensive Textbook of Psychiatry. Philadelphia, PA, USA

18.

Fisher P, Shaffer D, Wicks J, Piacentini J (1990) A users manual for the DISC-2. New York State Psychiatric Institute, New York

19.

Gavin LA, Wamboldt MZ, Sorokin N, Levy SY, Wamboldt FS (1999) Treatment alliance and its association with family functioning, adherence, and medical outcome in adolescents with severe, chronic asthma. J Pediatr Psychol 24:355–365PubMedCrossRef

20.

Geiss SK, Hobbs SA, Hammersley-Maercklein G, Kramer JC, Henley M (1992) Psychosocial factors related to perceived compliance with cystic fibrosis treatment. J Clin Psychol 48:99–103PubMedCrossRef

21.

Glasscoe CA, Quittner AL (2008) Psychological interventions for people with cystic fibrosis and their families. Cochrane Database of Systematic Reviews 2008, Issue 1. Art. No.: CD003148. DOI: 10.1002/14651858.CD003148.pub2

22.

Gudas LJ, Koocher GP, Wypij D (1991) Perceptions of medical compliance in children and adolescents with cystic fibrosis. J Dev Behav Pediatr 12:236–242PubMedCrossRef

23.

Ievers CE, Brown RT, Drotar D, Caplan D, Pishevar BS, Lambert RG (1999) Knowledge of physician prescriptions and adherence to treatment among children with cystic fibrosis and their mothers. J Dev Behav Pediatr 20:335–343PubMed

24.

Jaffe A, Bush A (2001) Cystic fibrosis: review of the decade. Monaldi Arch Chest Dis 56:240–247PubMed

25.

Kashani JH, Barbero GJ, Wilfley DE, Morris DA, Shepperd JA (1988) Psychological concomitants of cystic fibrosis in children and adolescents. Adolescence 23:873–880PubMed

26.

Kettler LJ, Sawyer SM, Winefield HR, Greville HW (2002) Determinants of adherence in adults with cystic fibrosis. Thorax 57:459–464PubMedCrossRef

27.

Lavigne JV, Faier-Routman J (1992) Psychological adjustment to pediatric physical disorders: a meta-analytic review. J Pediatr Psychol 17:133–157PubMedCrossRef

28.

Lewandowski A, Drotar D (2007) The relationship between parent-reported social support and adherence to medical treatment in families of adolescents with type 1 diabetes. J Pediatr Psychol 32:427–436PubMedCrossRef

29.

Litt IF, Cuskey WR (1980) Compliance with medical regimens during adolescence. Pediatr Clin North Am 27:3–15PubMed

30.

McCrae WM (1975) Emotional problems in cystic fibrosis. Physiotherapy 61:252–254PubMed

31.

Meyers A, Dolan TF Jr, Mueller D (1975) Compliance and self-medication in cystic fibrosis. Am J Dis Child 129:1011–1013PubMed

32.

Miller VA, Drotar D (2007) Decision-making competence and adherence to treatment in adolescents with diabetes. J Pediatr Psychol 32:178–188PubMedCrossRef

33.

Modi AC, Lim CS, Yu N, Geller D, Wagner MH, Quittner AL (2006) A multi-method assessment of treatment adherence for children with cystic fibrosis. J Cyst Fibros 5:177–185PubMedCrossRef

34.

Modi AC, Quittner AL (2006) Barriers to treatment adherence for children with cystic fibrosis and asthma: what gets in the way? J Pediatr Psychol 31:846–858PubMedCrossRef

35.

Myers LB, Horn SA (2006) Adherence to chest physiotherapy in adults with cystic fibrosis. J Health Psychol 11:915–926PubMedCrossRef

36.

Oermann CM, Swank PR, Sockrider MM (2000) Validation of an instrument measuring patient satisfaction with chest physiotherapy techniques in cystic fibrosis. Chest 118:92–97PubMedCrossRef

37.

Olson DH (1993) Circumplex model of marital and family systems: assessing family functioning. In: Walsh F (eds) Normal family processes. The Guilford Press, New York, pp 104–137

38.

Olson DH (1989) Clinical rating scale for the circumplex model. Family social science. University of Minnesota, St. Paul

39.

Olson DH (1994) Curvilinearity survives: the world is not flat. Fam Proc 33:471–478CrossRef

40.

Passero MA, Remor B, Salomon J (1981) Patient-reported compliance with cystic fibrosis therapy. Clin Pediatr (Phila) 20:264–268

41.

Patterson JM, Budd J, Goetz D, Warwick WJ (1993) Family correlates of a 10-year pulmonary health trend in cystic fibrosis. Pediatrics 91:383–389PubMed

42.

Patterson JM, Wall M, Berge J, Milla C (2008) Gender differences in treatment adherence among youth with cystic fibrosis: development of a new questionnaire. J Cyst Fibros 7:154–164PubMedCrossRef

43.

Pearson DA, Pumariega AJ, Seilheimer DK (1991) The development of psychiatric symptomatology in patients with cystic fibrosis. J Am Acad Child Adolesc Psychiatry 30:290–297PubMedCrossRef

44.

Prasad SA, Cerny FJ (2002) Factors that influence adherence to exercise and their effectiveness: application to cystic fibrosis. Pediatr Pulmonol 34:66–72PubMedCrossRef

45.

Riekert KA, Bartlett SJ, Boyle MP, Krishnan JA, Rand CS (2007) The association between depression, lung function, and health-related quality of life among adults with cystic fibrosis. Chest 132:231–237PubMedCrossRef

46.

Sanders MR, Gravestock FM, Wanstall K, Dunne M (1991) The relationship between children’s treatment-related behaviour problems, age and clinical status in cystic fibrosis. J Paediatr Child Health 27:290–294PubMedCrossRef

47.

Schall JI, Bentley T, Stallings VA (2006) Meal patterns, dietary fat intake and pancreatic enzyme use in preadolescent children with cystic fibrosis. J Pediatr Gastroenterol Nutr 43:651–659PubMed

48.

Shaffer D, Fisher P, Dulcan MK, Davies M, Piacentini J, Schwab-Stone ME, Lahey BB, Bourdon K, Jensen PS, Bird HR, Canino G, Regier DA (1996) The NIMH diagnostic interview schedule for children version 2.3 (DISC-2.3): description, acceptability, prevalence rates, and performance in the MECA Study. Methods for the epidemiology of child and adolescent mental disorders study. J Am Acad Child Adolesc Psychiatry 35:865–877PubMedCrossRef

49.

Shaffer D, Fisher P, Piacentini J, Schwab-Stone M, Wicks J (1990) Diagnostic interview schedule for children. New York State Psychiatric Institute, New York

50.

Simmons RJ, Corey M, Cowen L, Keenan N, Robertson J, Levison H (1987) Behavioral adjustment of latency age children with cystic fibrosis. Psychosom Med 49:291–301PubMed

51.

Simmons RJ, Corey M, Cowen L, Keenan N, Robertson J, Levison H (1985) Emotional adjustment of early adolescents with cystic fibrosis. Psychosom Med 47:111–122PubMed

52.

Smith BA, Wood BL (2007) Psychological factors affecting disease activity in children and adolescents with cystic fibrosis: medical adherence as a mediator. Curr Opin Pediatr 19:553–558PubMed

53.

Steinhausen HC, Schindler HP (1981) Psychosocial adaptation in children and adolescents with cystic fibrosis. J Dev Behav Pediatr 2:74–77PubMedCrossRef

54.

Szyndler JE, Towns SJ, van Asperen PP, McKay KO (2005) Psychological and family functioning and quality of life in adolescents with cystic fibrosis. J Cyst Fibros 4:135–144PubMedCrossRef

55.

Thompson RJ Jr, Gustafson KE, Hamlett KW, Spock A (1992) Psychological adjustment of children with cystic fibrosis: the role of child cognitive processes and maternal adjustment. J Pediatr Psychol 17:741–755PubMedCrossRef

56.

Turk J (1974) Impact of cystic fibrosis on family functioning. Pediatrics 34:67–71

57.

White H, Morton AM, Peckham DG, Conway SP (2004) Dietary intakes in adult patients with cystic fibrosis–do they achieve guidelines? J Cyst Fibros 3:1–7PubMedCrossRef

58.

Wysocki T, Harris MA, Buckloh LM, Mertlich D, Lochrie AS, Taylor A, Sadler M, Mauras N, White NH (2006) Effects of behavioral family systems therapy for diabetes on adolescents’ family relationships, treatment adherence, and metabolic control. J Pediatr Psychol 31:928–938PubMedCrossRef

59.

Zindani GN, Streetman DD, Streetman DS, Nasr SZ (2006) Adherence to treatment in children and adolescent patients with cystic fibrosis. J Adolesc Health 38:13–17PubMedCrossRef

Title: Adherence and psychopathology in children and adolescents with cystic fibrosis
Authors: Prof. Tonya White, MD
Prof. Judith Miller, PhD
Gail L. Smith, BS
Prof. William M. McMahon, MD
Publication date: 01-02-2009
Publisher: D. Steinkopff-Verlag
Published in: European Child & Adolescent Psychiatry / Issue 2/2009
Print ISSN: 1018-8827
Electronic ISSN: 1435-165X
DOI: https://doi.org/10.1007/s00787-008-0709-5

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Adherence and psychopathology in children and adolescents with cystic fibrosis

Abstract

Background

Methods

Results

Conclusions

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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