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Child and Adolescent Psychiatry and Mental Health

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Open Access 01-12-2023 | Juvenile Rheumatoid Arthritis | Research

Posttraumatic stress symptoms in adolescents and young adults with a chronic somatic disease: a mixed-methods study

Authors: Frederike Lunkenheimer, Agnes Mutter, Pauline Vogelmann, Harald Baumeister

Published in: Child and Adolescent Psychiatry and Mental Health | Issue 1/2023

Abstract

Background

Adolescents and young adults (AYA) with a chronic somatic disease (CD) have a 3-fold higher risk of post-traumatic stress disorder (PTSD) than healthy controls. In addition, elevated post-traumatic stress symptoms (PTSS) have a negative impact on CD severity, treatment adherence, health problems and functional impairment. However, a more detailed understanding of this comorbidity is lacking.

Methods

AYA with type 1 diabetes mellitus, juvenile idiopathic arthritis or cystic fibrosis (12–21 years of age) and elevated anxiety and/or depression symptoms, as well as their reference persons (≥ 18 years of age), completed online questionnaires in self- or observer report. The most stressful event related to the CD was reported descriptively. Questionnaires were used to assess PTSS, anxious and depressive symptoms, actual overall health, coping, personal growth and social support. Qualitative content analysis, linear regression models and correlations were used for mixed methods analysis.

Results

According to the reports of n = 235 AYA (mean age 15.61; 73% girls) and n = 70 reference persons, four categories were identified as the most stressful events due to CD: (1) psychological burden (40% of AYA / 50% of reference persons); (2) CD self-management (32% / 43%); (3) social burden (30% / 27%); and (4) physical impairment (23% / 16%). 37% of AYA reported clinically relevant PTSS due to CD. The best predictors of PTSS severity were anxious-depressive symptoms, emotional coping, personal growth and current overall health (F(4, 224) = 59.404, R² = 0.515, p < .001). Of all categories, psychological (β = 0.216, p = .002) and social burden (β = 0.143, p = .031) showed significant association with the severity of PTSS (F(4, 230) = 4.489, R² = 0.072, p = .002). The more categories the most stressful event addressed, the higher was the PTSS symptom severity (r = .168, p = .010).

Conclusions

Many AYA showed clinically relevant PTSS and reported experiencing stressful events in several areas of life through their CD. The association between the stressful event categories and other variables could help identify AYA with CD who need psychological interventions the most.

Trial registration

: German Clinical Trials Register (DRKS): DRKS00016714, registered on 25/03/2019 and DRKS00017161, registered on 17/09/201.

Robert-Koch-Institut, Herausgeber. Daten und Fakten: Ergebnisse der Studie > > Gesundheit in Deutschland aktuell 2010<<. Beiträge zur Gesundheitsberichterstattung des Bundes. Berlin: RKI; 2012.

Van Der Lee J, Mokkink L, Grootenhuis M, Heymans H, Offringa M. Definitions and measurement of a systematic review. JAMA. 2007;297(24):2741–51.PubMedCrossRef

Greiner W, Batram M, Dankhoff M, Hasemann L. Beiträge zur Gesundheitsökonomie und Versorgungsforschung: Vol. 36. DAK Kinder- und Jugendreport 2021: Gesundheitsversorgung von Kindern und Jugendlichen in Deutschland. Schwerpunkt: Suchterkrankungen. Storm A, editor. medhochzwei Verlag; 2021.

DiabetesDE. Deutscher Gesundheitsbericht Diabetes 2010 [Internet]. Deutscher Gesundheitsbericht Diabetes 2010. 2010. Available from: http://www.diabetesde.org/system/files/documents/gesundheitsbericht_2010_gesamt_28_10_2009.pdf.

Farrell PM. The prevalence of cystic fibrosis in the European Union. J Cyst Fibros. 2008;7(5):450–3.PubMedCrossRef

Luque Ramos A, Hoffmann F, Albrecht K, Klotsche J, Zink A, Minden K. Transition to adult rheumatology care is necessary to maintain DMARD therapy in young people with juvenile idiopathic arthritis. Semin Arthritis Rheum [Internet]. 2017;47(2):269–75. Available from: https://doi.org/10.1016/j.semarthrit.2017.05.003.

Hanns L, Cordingley L, Galloway J, Norton S, Carvalho LA, Christie D, et al. Depressive symptoms, pain and disability for adolescent patients with juvenile idiopathic arthritis: results from the Childhood Arthritis prospective study. Rheumatol (United Kingdom). 2018;57(8):1381–9.

Sawyer SM, Drew S, Yeo MS, Britto MT. Adolescents with a chronic condition: challenges living, challenges treating. Lancet. 2007;369(9571):1481–9.PubMedCrossRef

Härter M, Baumeister H, Reuter K, Jacobi F, Höfler M, Bengel JWH. Increased 12-month prevalence rates of mental disorders in patients with chronic somatic diseases. Psychother Psychosom. 2007;76(6):354–60.PubMedCrossRef

10.

Pinquart M. Posttraumatic stress symptoms and Disorders in children and adolescents with chronic physical illnesses: a Meta-analysis. J Child Adolesc Trauma. 2020;13(1):1–10.PubMedCrossRef

11.

American Psychiatric Association. Diagnostic and statistical Manual of Mental Disorders (DSM-5). 5th ed. Arlington, VA: American Psychiatric Association; 2013.CrossRef

12.

American Psychiatric Association. Diagnostic and statistical Manual of Mental Disorders (DSM-IV). 4th ed. Washingtion, DC: American Psychiatric Association; 1994.

13.

Meentken MG, van Beynum IM, Legerstee JS, Helbing WA, Utens EMWJ. Medically related post-traumatic stress in children and adolescents with congenital heart defects. Front Pediatr. 2017;5(February):1–6.

14.

DeCarvalho LT. Important missing links in the treatment of chronic low back pain patients. J Musculoskelet Pain. 2010;18(1):11–22.CrossRef

15.

Langeveld NE, Grootenhuis MA, Voûte PA, De Haan RJ. Posttraumatic stress symptoms in adult survivors of childhood cancer. Pediatr Blood Cancer. 2004;42(7):604–10.PubMedCrossRef

16.

James J, Harris YT, Kronish IM, Wisnivesky JP, Lin JJ. Exploratory study of impact of cancer-related posttraumatic stress symptoms on diabetes self-management among cancer survivors. Psychooncology. 2018;27(2):648–53.PubMedCrossRef

17.

Boyd JE, O´Connor C, Protopopescu A, Jetly R, Lanius RA, McKinnon M. The contributions of emotion regulation difficulties and dissociative symptoms to functional impairment among civilian inpatients with posttraumatic stress symptoms. Psychol Trauma Theory Res Patractice Policy. 2020;12(7):739–49.CrossRef

18.

Barakat LP, Wodka EL. Posttraumatic stress symptoms in college students with a chronic illness. Soc Behav Pers. 2006;34:999–1006.CrossRef

19.

Kahana SY, Feeny NC, Youngstrom EA, Drotar D. Posttraumatic stress in youth experiencing illnesses and injuries: an exploratory meta-analysis. Traumatol (Tallahass Fla). 2006;12(2):148–61.CrossRef

20.

Holley AL, Wilson AC, Noel M, Palermo TM. Post-traumatic stress symptoms in children and adolescents with chronic pain: a topical review of the literature and a proposed framework for future research. Eur J Pain (United Kingdom). 2016;20(9):1371–83.

21.

Alonzo AA. The experience of chronic illness and post-traumatic stress disorder: the consequences of cumulative adversity. Soc Sci Med. 2000;50:1475–84.PubMedCrossRef

22.

O´Connor SS, Zatzick DF, Wang J, Temkin N, Koepsell TD, Jaffe KM, Durbin D, Vavilala M, Dorsch A, Rivara FP. Association between posttraumtic stress, depression, and functional impairments in adolescents 24 month after traumatic brain injury. J Trauma Stress. 2012;25:264–71.PubMedCrossRef

23.

Renna CP, Boyer BA, Prout MF, Scheiner G. Posttraumatic stress related to hyperglycemia: prevalence in adults with type I diabetes. J Clin Psychol Med Settings. 2016;23(3):269–84.PubMedCrossRef

24.

Cabizuca M, Mendlowicz M, Marques-Portella C, Ragoni C, Coutinho ESF, De Souza W et al. The invisible patients: posttraumatic stress disorder in parents of individuals with cystic fibrosis. Rev Psiquiatr Clin. 2010;37(1).

25.

Pinquart M. Posttraumatic stress symptoms and Disorders in parents of children and adolescents with chronic physical illnesses: a Meta-analysis. J Trauma Stress. 2019;32(1):88–96.PubMedCrossRef

26.

Rechenberg K, Grey M, Sadler L. Stress and posttraumatic stress in mothers of children with type 1 diabetes. J Fam Nurs. 2017;23(2):201–25.PubMedPubMedCentralCrossRef

27.

Kuckartz U. Mixed methods. Wiesbaden: Springer Fachmedien; 2014.CrossRef

28.

Levitt HM, Bamberg M, Creswell JW, Frost DM, Suárez-orozco C, Appelbaum M et al. Reporting Standards for Qualitative Research in Psychology: The APA Publications and Communications Board Task Force Report. Am Psychol [Internet]. 2018;1(2):26–46. Available from: http://search.proquest.com.ezp-prod1.hul.harvard.edu/docview/61476746?accountid=11311%5Cnhttp://sfx.hul.harvard.edu/hvd?url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&genre=article&sid=ProQ:ProQ:socabsshell&atitle=The+Victim+Ideology+of+Whit

29.

Lunkenheimer F, Domhardt M, Geirhos A, Kilian R, Mueller-Stierlin AS, Holl RW, Meissner T, Minden K, Moshagen M, Ranz R, Sachser C, Staab D, Warschburger P. Baumeister H& C consortium. Effectiveness and cost-effectiveness of guided internet- and mobile-based CBT for adolescents and young adults with chronic somatic conditions and comorbid depression and anxiety symptoms (youthCOACHCD): study protocol of a multicentre randomized controll.

30.

Geirhos A, Domhardt M, Lunkenheimer F, Temming S, Holl RW, Minden K et al. Feasibility and potential efficacy of a guided internet- and mobile-based CBT for adolescents and young adults with chronic medical conditions and comorbid depression or anxiety symptoms (youthCOACHCD): a randomized controlled pilot trial. BMC Pediatr [Internet]. 2022;22(1):1–15. Available from: https://doi.org/10.1186/s12887-022-03134-3.

31.

Spitzer RL, Kroenke K, Williams JBW, Löwe B. A Brief Measure for Assessing Generalized Anxiety Disorder. Arch Intern Med [Internet]. 2006;166(10):1092. Available from: http://archinte.jamanetwork.com/article.aspx?doi=10.1001/archinte.166.10.1092.

32.

Richardson LP, McCauley, Elizabeth, Grossmann DC, McCarty, Carolyn A, Richards, Julie, Russo JE. Rockhill, Carol, Katon W. evaluation of the Patient Health Questionnaire – 9 item for detecting Major Depression among Adolescents. Pediatrics. 2010;126(6):1117–23.PubMedCrossRef

33.

Minden K, Niewerth M, Listing J, Zink A. German Study Group of Pediatric Rheumatologists. Health care provision in pediatric rheumatology in Germany–national rheumatologic database. J Rheumatol. 2002;29(3):622–8.PubMed

34.

Hofer SE, Schwandt, Anke, Holl, Reinhard W, for the G, Initiative D. Standardized documentation in Pediatric Diabetology: experience from Austria and Germany. J Diabetes Sci Technol. 2016;10(5):1042–9.PubMedPubMedCentralCrossRef

35.

Stern M. The use of a cystic fibrosis patient registry to assess outcomes and improve cystic fibrosis care in Germany. 2011.

36.

Unipark. https://www.unipark.de/.

37.

Sachser C, Berliner L, Holt T, Jensen TK, Jungbluth N, Risch E et al. International development and psychometric properties of the Child and Adolescent Trauma Screen (CATS). J Affect Disord [Internet]. 2017;210(August 2016):189–95. Available from: https://doi.org/10.1016/j.jad.2016.12.040.

38.

Kroenke K, Wu J, Yu Z, Bair MJ, Kean J, Stump T, et al. Patient health questionnaire anxiety and depression scale: initial validation in three clinical trials. Psychosom Med. 2016;78(6):716–27.PubMedPubMedCentralCrossRef

39.

Wille N, Badia X, Bonsel G, Burström K, Cavrini G, Devlin N, et al. Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Qual Life Res. 2010;19(6):875–86.PubMedPubMedCentralCrossRef

40.

Ravens-Sieberer U, Wille N, Badia X, Bonsel G, Burström K, Cavrini G, et al. Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Qual Life Res. 2010;19(6):887–97.PubMedPubMedCentralCrossRef

41.

Petersen C, Schmidt S, Bullinger M, DISABKIDS Group. Brief report: development and pilot testing of a coping questionnaire for children and adolescents with Chronic Health Conditions. J Pediatr Psychol. 2004;29(8):635–40.PubMedCrossRef

42.

Park CL, Cohen LH, Murch RL. Assessment and Prediction of Stress-Related Growth. J Pers [Internet]. 1996;64(1):71–105. Available from: http://doi.wiley.com/https://doi.org/10.1111/j.1467-6494.1996.tb00815.x.

43.

Maercker A, Langner R. Persönliche Reifung (Personal Growth) durch belastungen und traumata: Validierung zweier deutschsprachiger Fragebogenversionen. DIAGNOSTICA. 2001;47:153–62.CrossRef

44.

Schulz U, Schwarzer R. Soziale Unterstützung bei der Krankheitsbewältigung. Die Berliner Social Support Skalen (BSSS). Diagnostica. 2003;49:73–82.CrossRef

45.

Essau CA, Muris P, Ederer EM. *Reliability and validity of the Spence’s children’s anxiety scale and the screen for anxiety related emotional Disorders in german children. J Behav Ther Exp Psychiatry. 2002;33:1–18.PubMedCrossRef

46.

Thabrew H, Stasiak K, Bavin LM, Frampton C, Merry S. Validation of the Mood and feelings Questionnaire (MFQ) and short Mood and feelings Questionnaire (SMFQ) in New Zealand help-seeking adolescents. Int J Methods Psychiatr Res 2018;(December 2017):1–9.

47.

Software V. MAXQDA 2022 [Internet]. Berlin: VERBI Software; 2021. Available from: maxqda.com.

48.

Mayring P, free download via Social Science Open Access Repository SSOAR). Qualitative content analysis: Theoretical foundation, basic procedures and software solution (. Forum Qual Sozialforschung/Forum Qual Soc Res [Internet]. 2014;(October). Available from: https://www.ssoar.info/ssoar/bitstream/handle/document/39517/ssoar-2014-mayring-Qualitative_content_analysis_theoretical_foundation.pdf.

49.

Geirhos A, Lunkenheimer F, Holl RW, Minden K, Schmitt A, Temming S et al. Involving patients’ perspective in the development of an internet- and mobile-based CBT intervention for adolescents with chronic medical conditions: Findings from a qualitative study. Internet Interv [Internet]. 2021;24:100383. Available from: https://doi.org/10.1016/j.invent.2021.100383.

50.

IBM Corporation. IBM SPSS Statistics Version 28 [Internet]. New York: IBM Corporation; 2021. Available from: www.ibm.com.

51.

Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. L. Erlbaum Associates; 1988.

52.

Tedeschi RG, Calhoun LG. Posttraumatic growth: conceptual foundations and empirical evidence. Psychol Inq. 2004;15(1):1–18.CrossRef

53.

Tillery R, Howard Sharp KM, Okado Y, Long A, Phipps S. Profiles of Resilience and Growth in Youth with Cancer and healthy comparisons. J Pediatr Psychol. 2016;41(3):290–7.PubMedCrossRef

54.

Spinhoven P, Penninx BW, van Hemert AM, de Rooij M, Elzinga BM. Comorbidity of PTSD in anxiety and depressive disorders: Prevalence and shared risk factors. Child Abus Negl [Internet]. 2014;38(8):1320–30. Available from: https://doi.org/10.1016/j.chiabu.2014.01.017.

55.

Kessler RC, Chiu T, Demler W, Walters O. Prevalence, severity, and Comorbidity of twelve-month DSM-IV Disorders in the National Comorbidity Survey replication (NCS- R). Arch Gen Psychiatry. 2005;62(6):617–27.PubMedPubMedCentralCrossRef

56.

Mauritz PJ, Bolling M, Duipmans JC, Hagedoorn M. The relationship between quality of life and coping strategies of children with EB and their parents. Orphanet J Rare Dis [Internet]. 2021;16(1):1–9. Available from: https://doi.org/10.1186/s13023-021-01702-x.

57.

Lange K, Ernst G, Kordonouri O, Danne T, Saßmann H. Type 1 diabetes in adolescence: taking responsibility. Diabetologe. 2022;18(2):104–13.CrossRef

58.

Kulzer B, Albus C, Herpertz S, Kruse J, Lange K, Lederbogen F, Petrak F. Psychosoziales und diabetes. Diabetol und Stoffwechsel. 2021;16:389–405.CrossRef

59.

Sengler C, Niewerth M, Holl RW, Kilian R, Meissner T, Staab D, et al. Psychische Komorbidität bei der juvenilen idiopathischen Arthritis: Bestandsaufnahme und Ausblick. Kinderrheumatologie. 2019;39:46–53.

60.

Schilling LS, Knafl KA, Grey M. Changing patterns of self-management in youth with type I diabetes. J Pediatr Nurs. 2006;21(6):412–24.PubMedCrossRef

61.

Khadilkar A, Oza C. Glycaemic Control in Youth and Young Adults: Challenges and Solutions. Diabetes, Metab Syndr Obes Targets Ther. 2022;15:121–9.

62.

Lerch MF, Thrane SE. Adolescents with chronic illness and the transition to self-management: a systematic review. J Adolesc. 2019;72:152–61.PubMedCrossRef

63.

Ingerski LM, Shaw K, Gray WN, Janicke DM. A pilot study comparing traumatic stress symptoms by child and parent report across pediatric chronic illness groups. J Dev Behav Pediatr. 2010;31(9):713–9.PubMedPubMedCentralCrossRef

64.

Lange K, Ernst G. Belastungen und stress bei Typ–1-Diabetes. Diabetologe. 2017;13(8):554–61.CrossRef

65.

Viner RM, Ozer EM, Denny S, Marmot M, Resnick M, Fatusi A et al. Adolescence and the social determinants of health. Lancet [Internet]. 2012;379(9826):1641–52. Available from: https://doi.org/10.1016/S0140-6736(12)60149-4.

66.

Kolassa IT, Ertl V, Eckart C, Kolassa S, Onyut LP, Elbert T. Spontaneous remission from PTSD depends on the number of traumatic event types experienced. Psychol Trauma Theory Res Pract Policy. 2010;2(3):169–74.CrossRef

67.

Cohn LN, Pechlivanoglou CE. Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis. J Pediatr. 2020;218:166–177.e2.

Title: Posttraumatic stress symptoms in adolescents and young adults with a chronic somatic disease: a mixed-methods study
Authors: Frederike Lunkenheimer
Agnes Mutter
Pauline Vogelmann
Harald Baumeister
Publication date: 01-12-2023
Publisher: BioMed Central
Keywords: Juvenile Rheumatoid Arthritis
Juvenile Rheumatoid Arthritis
Cystic Fibrosis
Cystic Fibrosis
Post Traumatic Stress Disorder
Published in: Child and Adolescent Psychiatry and Mental Health / Issue 1/2023
Electronic ISSN: 1753-2000
DOI: https://doi.org/10.1186/s13034-023-00630-x

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Posttraumatic stress symptoms in adolescents and young adults with a chronic somatic disease: a mixed-methods study

Abstract

Background

Methods

Results

Conclusions

Trial registration

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Trial registration

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