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Preferences for disease-related information and transitional skills among adolescents with congenital heart disease in the early transitional stage

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Abstract

Purpose

The transition towards adult-focused healthcare comprises a complex process requiring careful, individualized guidance of adolescents with congenital heart disease (CHD). Detailed data on their preferences regarding disease-related information and acquirable transitional skills are mostly lacking. We examined the preferences of CHD adolescents in the early transition stage.

Methods

A cross-sectional descriptive study was performed with adolescents recruited from a transition program. Two questionnaires assessing needs for information and transitional skills were used. Only questionnaires completed in the early transition stage were included.

Results

Forty-nine adolescents participated (mean age 15.9 ± 1.2 years, 43% girls). 59% requested information about their heart and previous and/or future surgeries/interventions, 45% about sports and medication, and a maximum of 27% about psychosocial topics. More girls than boys requested surgical information (76% versus 46%; p = 0.04). Adolescents with severely complex CHD more often requested information about medication than those with moderately complex CHD (63% versus 28%; p = 0.02). Older adolescents were less likely to request surgical information (OR = 0.53; 95%CI [0.26–0.88]; p = 0.03). Up to 83% of the adolescents perceived their skills as insufficient, but less than 14% was interested in acquiring skills.

   Conclusion: Adolescents were mainly interested in medical topics, followed by lifestyle information. The informational needs tended to decrease with age. Timely gauging individual needs and delivering information, ideally in the early teens, appear important when providing person-tailored transitional care in CHD. Paradoxically, although the transitional skills were low-perceived, there was limited motivation to improve them. This paradox requires further investigation to better tailor transition interventions. 

   Clinical trial registration: Not applicable.

What is Known:

• Transition towards adult life and care requires careful patient guidance. A person-tailored approach is strongly encouraged. However, details on preferences regarding disease-related information and transitional skills are scarce in adolescents with CHD.

What is New:

• This study showed that adolescents with CHD in early transition mainly need medical-related information. Their informational needs tend to decrease with age necessitating timely gauging for interest and delivering information. Adolescents report a low need to acquire transitional skills despite low self-esteemed skills levels.

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Data Availability

Encrypted/pseudonymized data will be shared upon request by researchers, depending on the aim of the analysis.

Abbreviations

CHD:

Congenital heart disease

CI:

Confidence interval

CP:

Communication paper

ITP:

Individual transition plan

OR:

Odds ratio

SD:

Standard deviation

SOC:

Sense of coherence

TWAH:

Transition With A Heart

References

  1. Liu Y, Chen S, Zühlke L, Black GC, Choy MK, Li N, Keavney BD (2019) Global birth prevalence of congenital heart defects 1970–2017: updated systematic review and meta-analysis of 260 studies. Int J Epidemiol 48:455–463. https://doi.org/10.1093/ije/dyz009

    Article  PubMed  PubMed Central  Google Scholar 

  2. Mandalenakis Z, Giang KW, Eriksson P, Liden H, Synnergren M, Wåhlander H, Fedchenko M, Rosengren A, Dellborg M (2020) Survival in children with congenital heart disease: have we reached a peak at 97%? J Am Heart Assoc 9:e017704. https://doi.org/10.1161/JAHA.120.017704

    Article  PubMed  PubMed Central  Google Scholar 

  3. Baumgartner H, De Backer J, Babu-Narayan SV, Budts W, Chessa M, Diller GP, Lung B, Kluin J, Lang IM, Meijboom F, Moons P, Mulder BJM, Oechslin E, Roos-Hesselink JW, Schwerzmann M, Sondergaard L, Zeppenfeld K (2020) 2020 ESC Guidelines for the management of adult congenital heart disease. Eur Heart J. https://doi.org/10.1093/eurheartj/ehaa554

    Article  PubMed  Google Scholar 

  4. Mondal TK, Muddaluru V, Jaafar A, Gupta-Bhatnagar S, Greville LJ, Gorter JW (2020) Transition of adolescents with congenital heart disease from pediatric to adult congenital cardiac care: lessons from a retrospective cohort study. J Transit Med 2(1):1–9. https://doi.org/10.1515/jtm-2019-0003

    Article  Google Scholar 

  5. Yeung E, Kay J, Roosevelt GE, Brandon M, Yetman AT (2008) Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 125:62–65. https://doi.org/10.1016/j.ijcard.2007.02.023

    Article  PubMed  Google Scholar 

  6. Moons P, Skogby S, Bratt EL, Zühlke L, Marelli A, Goossens E (2021) Discontinuity of cardiac follow-up in young people with congenital heart disease transitioning to adulthood: a systematic review and meta-analysis. J Am Heart Assoc 10:e019552. https://doi.org/10.1161/JAHA.120.019552

    Article  PubMed  PubMed Central  Google Scholar 

  7. Goossens E, Bovijn L, Gewillig M, Budts W, Moons P (2016) Predictors of care gaps in adolescents with complex chronic condition transitioning to adulthood. Pediatrics 137:peds. 2015–2413. https://doi.org/10.1542/peds.2015-2413

  8. Knauth Meadows A, Bosco V, Tong E, Fernandes S, Saidi A (2009) Transition and transfer from pediatric to adult care of young adults with complex congenital heart disease. Curr Cardiol Rep 11:291–297. https://doi.org/10.1007/s11886-009-0042-8

    Article  PubMed  Google Scholar 

  9. Stout KK, Daniels CJ, Aboulhosn JA, Bozkurt B, Broberg CS, Colman JM, Crumb SR, Dearani JA, Fuller S, Gurvitz M, Khairy P, Landzberg MJ, Saidi A, Valente AM, Van Hare GF (2019) 2018 AHA/ACC guideline for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines. Circulation 139:e698–e800. https://doi.org/10.1161/CIR.0000000000000603

    Article  PubMed  Google Scholar 

  10. Mackie AS, Fournier A, Swan L, Marelli AJ, Kovacs AH (2019) Transition and transfer from pediatric to adult congenital heart disease care in Canada: call for strategic implementation. Can J Cardiol 35:1640–1651. https://doi.org/10.1016/j.cjca.2019.08.014

    Article  PubMed  Google Scholar 

  11. Moons P, Bratt EL, De Backer J, Goossens E, Hornung T, Tutarel O, Zühlke L, Araujo JJ, Callus E, Gabriel H, Shahid N, Sliwa K, Verstappen A, Yang HL, Thomet C (2021) Transition to adulthood and transfer to adult care of adolescents with congenital heart disease: a global consensus statement of the ESC Association of Cardiovascular Nursing and Allied Professions (ACNAP), the ESC Working Group on Adult Congenital Heart Disease (WG ACHD), the Association for European Paediatric and Congenital Cardiology (AEPC), the Pan-African Society of Cardiology (PASCAR), the Asia-Pacific Pediatric Cardiac Society (APPCS), the Inter-American Society of Cardiology (IASC), the Cardiac Society of Australia and New Zealand (CSANZ), the International Society for Adult Congenital Heart Disease (ISACHD), the World Heart Federation (WHF), the European Congenital Heart Disease Organisation (ECHDO), and the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH). Eur Heart J. https://doi.org/10.1093/eurheartj/ehab388

    Article  PubMed  PubMed Central  Google Scholar 

  12. Clarizia NA, Chahal N, Manlhiot C, Kilburn J, Redington AN, McCrindle BW (2009) Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider. Can J Cardiol 25:e317-322. https://doi.org/10.1016/S0828-282X(09)70145-X

    Article  PubMed  PubMed Central  Google Scholar 

  13. Sawyer SM, Azzopardi PS, Wickremarathne D, Patton GC (2018) The age of adolescence. Lancet Child Adolesc Health 2:223–228. https://doi.org/10.1016/S2352-4642(18)30022-1

    Article  PubMed  Google Scholar 

  14. Acuna Mora M, Sparud-Lundin C, Bratt EL, Moons P (2017) Person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood: a study protocol for a hybrid randomised controlled trial (STEPSTONES project). BMJ Open 7:e014593. https://doi.org/10.1136/bmjopen-2016-014593

    Article  PubMed  PubMed Central  Google Scholar 

  15. National Institute for Health and Care Excellence (2016) NICE guideline: Transition from children’s to adults’ services for young people using health or social care services. https://www.nice.org.uk/guidance/ng43/chapter/Recommendations. Accessed 28 Apr 2021

  16. Pape L, Ernst G (2022) Health care transition from pediatric to adult care: an evidence-based guideline. Eur J Pediatr. https://doi.org/10.1007/s00431-022-04385-z

    Article  PubMed  PubMed Central  Google Scholar 

  17. Ladouceur M, Calderon J, Traore M, Cheurfi R, Pagnon C, Khraiche D, Bajolle F, Bonnet D (2017) Educational needs of adolescents with congenital heart disease: Impact of a transition intervention programme. Arch Cardiovasc Dis 110:317–324. https://doi.org/10.1016/j.acvd.2017.02.001

    Article  PubMed  Google Scholar 

  18. Lesch W, Specht K, Lux A, Frey M, Utens E, Bauer U (2014) Disease-specific knowledge and information preferences of young patients with congenital heart disease. Cardiol Young 24:321–330. https://doi.org/10.1017/S1047951113000413

    Article  PubMed  Google Scholar 

  19. Lopez KN, Karlsten M, Bonaduce De Nigris F, King J, Salciccioli K, Jiang A, Marelli A, Kovacs AH, Fordis M, Thompson D (2015) Understanding age-based transition needs: perspectives from adolescents and adults with congenital heart disease. Congenit Heart Dis 10:561–571. https://doi.org/10.1111/chd.12283

    Article  PubMed  Google Scholar 

  20. Chen CW, Su WJ, Chiang YT, Shu YM, Moons P (2017) Healthcare needs of adolescents with congenital heart disease transitioning into adulthood: a Delphi survey of patients, parents, and healthcare providers. Eur J Cardiovasc Nurs 16:125–135. https://doi.org/10.1177/1474515116643622

    Article  PubMed  Google Scholar 

  21. Van Staa A (2004) On Your Own Feet - three research projects. Rotterdam: https://www.rotterdamuas.com/research/projects-and-publications/innovations-in-care/selfmanagement-and-participation/on-your-own-feet/the-project. Accessed 17 Jun 2021

  22. Van Staa A (2011) Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: the added value of mixed methods research. Patient Educ Couns 82:455–464. https://doi.org/10.1016/j.pec.2010.12.001

    Article  PubMed  Google Scholar 

  23. Van Staa A, Sattoe JN, Strating MM (2015) Experiences with and outcomes of two interventions to maximize engagement of chronically ill adolescents during hospital consultations: a mixed methods study. J Pediatr Nurs 30:757–775. https://doi.org/10.1016/j.pedn.2015.05.028

    Article  PubMed  Google Scholar 

  24. Deanfield J, Thaulow E, Warnes C, Webb G, Kolbel F, Hoffman A, Sorenson K, Kaemmerer H, Thilen U, Bink-Boelkens M (2003) Management of grown up congenital heart disease. Eur Heart J 24:1035–1084. https://doi.org/10.1016/S0195-668X(03)00131-3

    Article  PubMed  Google Scholar 

  25. Saidi A, Kovacs AH (2009) Developing a transition program from pediatric- to adult-focused cardiology care: practical considerations. Congenit Heart Dis 4:204–215. https://doi.org/10.1111/j.1747-0803.2009.00312.x

    Article  PubMed  Google Scholar 

  26. De Hosson M, De Backer J, De Wolf D, De Groote K, Demulier L, Mels S, Vandekerckhove K, Goossens E (2020) Development of a transition program for adolescents with congenital heart disease. Eur J Ped 179:339–348. https://doi.org/10.1007/s00431-019-03515-4

    Article  Google Scholar 

  27. Goossens E, Van Deyk K, Zupancic N, Budts W, Moons P (2014) Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease. Eur J Cardiovasc Nurs 13:63–70. https://doi.org/10.1177/1474515113479231

    Article  PubMed  Google Scholar 

  28. Rickham PP (1964) Human experimentation. Code Of Ethics Of The World Medical Association. Declaration Of Helsinki. Br Med J 2:177. https://doi.org/10.1136/bmj.2.5402.177

    Article  CAS  PubMed  Google Scholar 

  29. Uzark K, Smith C, Donohue J, Yu S, Afton K, Norris M, Cotts T (2015) Assessment of transition readiness in adolescents and young adults with heart disease. J Pediatr 167:1233–1238. https://doi.org/10.1016/j.jpeds.2015.07.043

    Article  PubMed  Google Scholar 

  30. Hazen E, Schlozman S, Beresin E (2008) Adolescent psychological development: a review. Pediatr Rev 29:161–167; quiz 168. https://doi.org/10.1542/pir.29-5-161

  31. Apers S, Luyckx K, Goossens E, Rassart J, Budts W, Moons P (2015) Sense of coherence in young people with congenital heart disease. J Dev Behav Pediatr 36:267–276. https://doi.org/10.1097/DBP.0000000000000147

    Article  PubMed  Google Scholar 

  32. Eriksson M, Lindström B (2006) Antonovsky’s sense of coherence scale and the relation with health: a systematic review. J Epidemiol Community Health 60:376–381. https://doi.org/10.1136/jech.2005.041616

    Article  PubMed  PubMed Central  Google Scholar 

  33. DeMaso DR, Calderon J, Taylor GA, Holland JE, Stopp C, White MT, Bellinger DC, Rivkin MJ, Wypij D, Newburger JW (2017) Psychiatric disorders in adolescents with single ventricle congenital heart disease. Pediatrics 139. https://doi.org/10.1542/peds.2016-2241

  34. Deng LX, Gleason LP, Awh K, Khan AM, Drajpuch D, Fuller S, Goldberg LA, Mascio CE, Partington SL, Tobin L, Kovacs AH, Kim YY (2019) Too little too late? Communication with patients with congenital heart disease about challenges of adult life. Congenit Heart Dis 14:534–540. https://doi.org/10.1111/chd.12778

    Article  PubMed  Google Scholar 

  35. Diller GP, Kempny A, Alonso-Gonzalez R, Swan L, Uebing A, Li W, Babu-Narayan S, Wort SJ, Dimopoulos K, Gatzoulis MA (2015) Survival prospects and circumstances of death in contemporary adult congenital heart disease patients under follow-up at a large tertiary centre. Circulation 132:2118–2125. https://doi.org/10.1161/circulationaha.115.017202

    Article  PubMed  Google Scholar 

  36. De Hosson M, Goossens PJJ, De Backer J, De Wolf D, Van Hecke A (2021) Needs and experiences of adolescents with congenital heart disease and parents in the transitional process: a qualitative study. J Pediatr Nurs 61:90–95. https://doi.org/10.1016/j.pedn.2021.03.016

    Article  PubMed  Google Scholar 

  37. Saarijärvi M, Wallin L, Moons P, Gyllensten H, Bratt EL (2021) Mechanisms of impact and experiences of a person-centred transition programme for adolescents with CHD: the Stepstones project. BMC Health Serv Res 21:573. https://doi.org/10.1186/s12913-021-06567-1

    Article  PubMed  PubMed Central  Google Scholar 

  38. Harrison D, Gurvitz M, Yu S, Lowery RE, Afton K, Yetman A, Cramer J, Rudd N, Cohen S, Gongwer R, Uzark K (2021) Differences in perceptions of transition readiness between parents and teens with congenital heart disease: do parents and teens agree? Cardiol Young 31:957–964. https://doi.org/10.1017/S1047951120004813

    Article  PubMed  Google Scholar 

  39. Van Staa A, Peeters M, Sattoe J (2020) On Your Own Feet: a practical framework for improving transitional care and young people's self-management. In: Switzerland SN (ed) Transition from Pediatrics to Adult Healthcare Services for Adolescents and Young Adults with Long-term Conditions. Springer Nature, Switzerland

  40. Charlier N, Zupancic N, Fieuws S, Denhaerynck K, Zaman B, Moons P (2016) Serious games for improving knowledge and self-management in young people with chronic conditions: a systematic review and meta-analysis. J Am Med Inform Assoc 23:230–239. https://doi.org/10.1093/jamia/ocv100

    Article  PubMed  Google Scholar 

  41. Ravens E, Becker J, Pape L, Ernst G (2020) Psychosocial benefit and adherence of adolescents with chronic diseases participating in transition programs: a systematic review. J Transit Med 2(1). https://doi.org/10.1515/jtm-2020-0009

  42. Schaefer MR, Kavookjian J (2017) The impact of motivational interviewing on adherence and symptom severity in adolescents and young adults with chronic illness: a systematic review. Patient Educ Couns 100:2190–2199. https://doi.org/10.1016/j.pec.2017.05.037

    Article  PubMed  Google Scholar 

  43. Hosmer DW, Hosmer T, Le Cessie S, Lemeshow S (1997) A comparison of goodness-of-fit tests for the logistic regression model. Stat Med 16:965–980. https://doi.org/10.1002/(sici)1097-0258(19970515)16:9%3C965::aid-sim509%3E3.0.co;2-o

    Article  CAS  PubMed  Google Scholar 

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Acknowledgements

The authors want to express thanks to the participants in this study and acknowledge the valuable contribution of all (pediatric) cardiologist and nursing staff in TWAH.

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Authors and Affiliations

  1. Department of Adult Congenital Heart Disease Ghent, Ghent University Hospital, Corneel Heymanslaan 10, B-9000, Ghent, Belgium

    Michèle de Hosson & Julie De Backer

  2. Department of Pediatric Cardiology, Ghent University Hospital, Ghent, Belgium

    Katya De Groote & Laura Muiño Mosquera

  3. Department of Public Health and Primary Care & Health Economics, Ghent University, Ghent, Belgium

    Herlinde Wynendaele

  4. Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium

    Laura Muiño Mosquera & Julie De Backer

  5. Centre for Research and Innovation in Care (CRIC), Department of Nursing and Midwifery Sciences, University of Antwerp, Antwerp, Belgium

    Eva Goossens

  6. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium

    Eva Goossens

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  1. Michèle de Hosson
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  2. Katya De Groote
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  3. Herlinde Wynendaele
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  4. Laura Muiño Mosquera
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  5. Eva Goossens
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  6. Julie De Backer
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Contributions

Michèle de Hosson: conceptualization, methodology, formal analysis, writing—original draft; Katya De Groote: writing—review and editing; Herlinde Wynendaele: formal analysis, writing—review and editing; Laura Muiño Mosquera: writing—review and editing; Eva Goossens: conceptualization, writing—review and editing, supervision; Julie De Backer: conceptualization, writing—review and editing, supervision.

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Correspondence to Michèle de Hosson.

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The authors declare no competing interests.

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Communicated by Peter de Winter.

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Eva Goossens and Julie De Backer have equal contribution and share last authorship.

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de Hosson, M., De Groote, K., Wynendaele, H. et al. Preferences for disease-related information and transitional skills among adolescents with congenital heart disease in the early transitional stage. Eur J Pediatr 182, 3917–3927 (2023). https://doi.org/10.1007/s00431-023-05020-1

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