Hostname: page-component-cd9895bd7-dzt6s Total loading time: 0 Render date: 2024-12-27T13:44:11.000Z Has data issue: false hasContentIssue false
  • English
  • Français

Differences in perceptions of transition readiness between parents and teens with congenital heart disease: do parents and teens agree?

Published online by Cambridge University Press:  11 January 2021

David Harrison Open the ORCID record for David Harrison [Opens in a new window] ,
Michelle Gurvitz ,
Sunkyung Yu ,
Ray E. Lowery ,
Katherine Afton ,
Angela Yetman ,
Jonathan Cramer ,
Nancy Rudd ,
Scott Cohen  and
Russell Gongwer
...Show all authors
David Harrison*
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Michelle Gurvitz
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Sunkyung Yu
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Ray E. Lowery
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Katherine Afton
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Angela Yetman
Affiliation:
Department of Pediatric Cardiology, Children’s Hospital & Medical Ctr, Omaha, NE, USA
Jonathan Cramer
Affiliation:
Department of Pediatric Cardiology, Children’s Hospital & Medical Ctr, Omaha, NE, USA
Nancy Rudd
Affiliation:
Department of Pediatrics, Children’s Hospital of Wisconsin, Milwaukee, WI, USA
Scott Cohen
Affiliation:
Department of Internal Medicine and Department of Pediatrics, Children’s Hospital of Wisconsin, Milwaukee, WI, USA
Russell Gongwer
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Karen Uzark
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
*
Author for correspondence: Dr D. Harrison, MD, Boston Children’s Hospital, 300 Longwood Avenue, Boston, BCH 3215, MA, USA. Tel: 617-355-2079; Fax: 617-7386289. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Amongst patients with CHD, the time of transition to adulthood is associated with lapses in care leading to significant morbidity. The purpose of this study was to identify differences in perceptions between parents and teens in regard to transition readiness.

Methods:

Responses were collected from 175 teen–parent pairs via the validated CHD Transition Readiness survey and an information request checklist. The survey was distributed via an electronic tablet at a routine clinic visit.

Results:

Parents reported a perceived knowledge gap of 29.2% (the percentage of survey items in which a parent believes their teen does not know), compared to teens self-reporting an average of 25.9% of survey items in which they feel deficient (p = 0.01). Agreement was lowest for long-term medical needs, physical activities allowed, insurance, and education. In regard to self-management behaviours, agreement between parent and teen was slight to moderate (weighted κ statistic = 0.18 to 0.51). For self-efficacy, agreement ranged from slight to fair (weighted κ = 0.16 to 0.28). Teens were more likely to request information than their parents (79% versus 65% requesting at least one item) particularly in regard to pregnancy/contraception and insurance.

Conclusion:

Parents and teens differ in several key perceptions regarding knowledge, behaviours, and feelings related to the management of heart disease. Specifically, parents perceive a higher knowledge deficit, teens perceive higher self-efficacy, and parents and teens agree that self-management is low.

Keywords

Adult congenital heart diseasepatient educationself-managementhealthcare transitionadolescent medicine
Type
Original Article
Information
Cardiology in the Young , Volume 31 , Issue 6 , June 2021 , pp. 957 - 964
Check for updates
Copyright
© The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Gilboa, SM, Devine, OJ, Kucik, JE, et al. Congenital heart defects in the United States: estimating the magnitude of the affected Population in 2010. Circulation 2016; 134: 101–109.CrossRefGoogle ScholarPubMed
Marelli, AJ, Mackie, AS, Ionescu-Ittu, R, Rahme, E, Pilote, L. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 2007; 115: 163–172.CrossRefGoogle ScholarPubMed
Warnes, CA, Liberthson, R, Danielson, GK, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37: 1170–1175.CrossRefGoogle ScholarPubMed
Yeung, E, Kay, J, Roosevelt, GE, Brandon, M, Yetman, AT. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008; 125: 62–65.CrossRefGoogle Scholar
Gurvitz, M, Valente, AM, Broberg, C, et al. Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial). J Am Coll Cardiol 2013; 61: 2180–2184.CrossRefGoogle Scholar
Kikkenborg Berg, S, Pedersen, PU. Perception of general health in adults with congenital heart disease who no longer attend medical follow-up. Eur J Cardiovasc Nurs 2008; 7: 264–268.CrossRefGoogle ScholarPubMed
Sable, C, Foster, E, Uzark, K, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 2011; 123: 1454–1485.CrossRefGoogle ScholarPubMed
Rosen, DS, Blum, RW, Britto, M, Sawyer, SM, Siegel, DM. 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.CrossRefGoogle Scholar
Uzark, K, Yu, S, Lowery, R, et al. Transition readiness in teens and young adults with congenital heart disease: can we make a difference? J Pediatr 2020; 221: 201.e201–206.e201.CrossRefGoogle Scholar
Cotts, TB. Transition of care in congenital disease: allaying fears for patients and specialists. Prog Cardiovasc Dis 2018; 61: 282–286.CrossRefGoogle ScholarPubMed
Harris, PA, Taylor, R, Minor, BL, et al. The REDCap consortium: building an international community of software platform partners. J Biomed Inform 2019; 95: 103208.CrossRefGoogle ScholarPubMed
Uzark, K, Smith, C, Donohue, J, et al. Assessment of transition readiness in adolescents and young adults with heart disease. J Pediatr 2015; 167: 1233–1238.CrossRefGoogle Scholar
Ferris, ME, Harward, DH, Bickford, K, et al. A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TR(x)ANSITION scale. Ren Fail 2012; 34: 744–753.CrossRefGoogle ScholarPubMed
Cohen, J. Weighted kappa: nominal scale agreement with provision for scaled disagreement or partial credit. Psychol Bull 1968; 70: 213–220.CrossRefGoogle ScholarPubMed
Kokkonen, J, Paavilainen, T. Social adaptation of young adults with congenital heart disease. Int J Cardiol 1992; 36: 23–29.CrossRefGoogle ScholarPubMed
McLoughlin, A, Matthews, C, Hickey, TM. “They’re kept in a bubble”: healthcare professionals’ views on transitioning young adults with congenital heart disease from paediatric to adult care. Child Care Health Dev 2018; 44: 736–745.CrossRefGoogle Scholar
Deng, LX, Gleason, LP, Awh, K, et al. Too little too late? Communication with patients with congenital heart disease about challenges of adult life. Congenit Heart Dis 2019; 14: 534–540.CrossRefGoogle ScholarPubMed
Swan, L, Hillis, WS. Exercise prescription in adults with congenital heart disease: a long way to go. Heart 2000; 83: 685–687.CrossRefGoogle ScholarPubMed
Lin, CJ, Novak, E, Rich, MW, Billadello, JJ. Insurance access in adults with congenital heart disease in the Affordable Care Act era. Congenit Heart Dis 2018; 13: 384–391.CrossRefGoogle ScholarPubMed
Riley, M, Patterson, V, Lane, JC, Won, KM, Ranalli, L. The adolescent champion model: primary care becomes adolescent-centered via targeted quality improvement. J Pediatr 2018; 193: 229.e221–236.e221.CrossRefGoogle ScholarPubMed
Svetaz, MV, Garcia-Huidobro, D, Allen, M. Parents and family matter: strategies for developing family-centered adolescent care within primary care practices. Prim Care 2014; 41: 489–506.CrossRefGoogle ScholarPubMed
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 (Pt 2): 1304–1306.Google Scholar
Mackie, AS, Rempel, GR, Rankin, KN, Nicholas, D, Magill-Evans, J. Risk factors for loss to follow-up among children and young adults with congenital heart disease. Cardiol Young 2012; 22: 307–315.CrossRefGoogle Scholar
Stewart, KT, Chahal, N, Kovacs, AH, et al. Readiness for transition to adult health care for young adolescents with congenital heart disease. Pediatr Cardiol 2017; 38: 778–786.CrossRefGoogle ScholarPubMed
Sparacino, PS, Tong, EM, Messias, DK, Foote, D, Chesla, CA, Gilliss, CL. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart Lung 1997; 26: 187–195.CrossRefGoogle Scholar
Uzark, K, Jones, K, Slusher, J, Limbers, CA, Burwinkle, TM, Varni, JW. Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008; 121: e1060–e1067.CrossRefGoogle ScholarPubMed
Petek, T, Hertiš, T, Marčun Varda, N. Health-related quality of life in paediatric arterial hypertension: a cross-sectional study. BMC Pediatr 2018; 18: 146.CrossRefGoogle ScholarPubMed
Marcell, AV, Burstein, GR. Sexual and reproductive health care services in the pediatric setting. Pediatrics 2017; 140: e20172858.CrossRefGoogle ScholarPubMed
Lopez, KN, O’Connor, M, King, J, et al. Improving transitions of care for young adults with congenital heart disease: mobile app development using formative research. JMIR Form Res 2018; 2: e16.CrossRefGoogle ScholarPubMed
Thompson, LA, Martinko, T, Budd, P, Mercado, R, Schentrup, AM. Meaningful use of a confidential adolescent patient portal. J Adolesc Health 2016; 58: 134–140.CrossRefGoogle ScholarPubMed
Virella Pérez, YI, Medlow, S, Ho, J, Steinbeck, K. Mobile and web-based apps that support self-management and transition in young people with chronic illness: systematic review. J Med Internet Res 2019; 21: e13579.CrossRefGoogle ScholarPubMed
Applebaum, MA, Lawson, EF, von Scheven, E. Perception of transition readiness and preferences for use of technology in transition programs: teens’ ideas for the future. Int J Adolesc Med Health 2013; 25: 119–125.CrossRefGoogle ScholarPubMed
Fedele, DA, Cushing, CC, Fritz, A, Amaro, CM, Ortega, A. Mobile health interventions for improving health outcomes in youth: a meta-analysis. JAMA Pediatr 2017; 171: 461–469.CrossRefGoogle ScholarPubMed
Adult Congenital Heart Association – Homepage, 2020. https://achaheart.org. (Accessed October 2021).Google Scholar
I <3 Change, 2020. https://www.iheartchange.org/. (Accessed October 2021).Google Scholar
Good 2 Go Transition Program – My Health Passport, 2012. https://www.sickkids.ca/myhealthpassport/Default.aspx. (Accessed October 2021).Google Scholar
Yang, HL, Chen, YC, Wang, JK, Gau, BS, Moons, P. An evaluation of disease knowledge in dyads of parents and their adolescent children with congenital heart disease. J Cardiovasc Nurs 2013; 28: 541–549.CrossRefGoogle ScholarPubMed
Burström, Å, Acuña Mora, M, Öjmyr-Joelsson, M, et al. Ready for transfer to adult care? a triadic evaluation of transition readiness in adolescents with congenital heart disease and their parents. J Fam Nurs 2019; 25: 447–468.CrossRefGoogle ScholarPubMed