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Quality of life in adult survivors after paediatric heart transplantation in Australia

Published online by Cambridge University Press:  17 June 2019

Alice Parker Open the ORCID record for Alice Parker [Opens in a new window] ,
Xin Tao Ye ,
Jacob Mathew ,
Melissa Lee ,
Igor E. Konstantinov ,
Yves d’Udekem ,
Christian Brizard  and
Johann Brink
Alice Parker
Affiliation:
Murdoch Children’s Research Institute, Heart Research Group, Melbourne, Australia
Xin Tao Ye
Affiliation:
Murdoch Children’s Research Institute, Heart Research Group, Melbourne, Australia
Jacob Mathew
Affiliation:
Department of Cardiology, The Royal Children’s Hospital, Melbourne, Australia
Melissa Lee
Affiliation:
Murdoch Children’s Research Institute, Heart Research Group, Melbourne, Australia
Igor E. Konstantinov
Affiliation:
Murdoch Children’s Research Institute, Heart Research Group, Melbourne, Australia Department of Cardiac Surgery, The Royal Children’s Hospital, Melbourne, Australia Department of Paediatrics, Faculty of Medicine, University of Melbourne, Melbourne, Australia
Yves d’Udekem
Affiliation:
Murdoch Children’s Research Institute, Heart Research Group, Melbourne, Australia Department of Cardiac Surgery, The Royal Children’s Hospital, Melbourne, Australia Department of Paediatrics, Faculty of Medicine, University of Melbourne, Melbourne, Australia
Christian Brizard
Affiliation:
Murdoch Children’s Research Institute, Heart Research Group, Melbourne, Australia Department of Cardiac Surgery, The Royal Children’s Hospital, Melbourne, Australia Department of Paediatrics, Faculty of Medicine, University of Melbourne, Melbourne, Australia
Johann Brink*
Affiliation:
Murdoch Children’s Research Institute, Heart Research Group, Melbourne, Australia Department of Paediatrics, Faculty of Medicine, University of Melbourne, Melbourne, Australia
*
Author for correspondence: Dr. Johann Brink, Cardiac Surgery Department, The Royal Children’s Hospital, 50 Flemington Road, Parkville, VIC 3052, Australia. Tel: +61 3 9345 5200; Fax: +61 3 9345 6001; E-mail: [email protected]
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Abstract

Background:

Paediatric heart transplantation in Australia is centralised at The Royal Children’s Hospital, Melbourne. Survival to adulthood is improving but the ongoing need for complex medical therapy, surveillance, and potential for late complications continues to impact on quality of life. Quality of life in adults who underwent heart transplantation in childhood in Australia has not been assessed.

Methods:

Cross-sectional quality of life data were collected from paediatric heart transplant survivors >18 years of age using Rand 36-Item Health Survey. Self-reported raw scores were transformed to a 0–100 scale with higher scores indicating better quality of life. Mean scores were compared to National Health Survey Short Form-36 Population Norms data using the independent sample t-test.

Results:

A total of 64 patients (64/151) who underwent transplantation at The Royal Children’s Hospital between 1988 and 2016 survived to adulthood. In total 51 patients (51/64, 80%) were alive at the time of the study and 27 (53%) responded with a mean age of 25 ± 6 years, being a median of 11 years (interquartile range 7–19) post-transplantation. Most self-reported quality of life subscale scores were not significantly different from the Australian normative population data. However, self-reported ‘General Health’ was significantly worse than normative data (p = 0.02). Overall, 93% (25/27) reported their general health as being the same or better compared to 1-year ago.

Conclusion:

Adult survivors after paediatric heart transplantation in Australia report good quality of life in multiple domains and demonstrate independence in activities of daily living and employment. However, lifelong medical treatment may affect perceptions of general health.

Keywords

paediatricheart transplantationquality of lifeadult survivors
Type
Original Article
Information
Cardiology in the Young , Volume 29 , Issue 7 , July 2019 , pp. 939 - 944
Copyright
© Cambridge University Press 2019 

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References

Morales, DL, Dreyer, WJ, Denfield, SW, et al. Over two decades of pediatric heart transplantation: how has survival changed? J Thorac Cardiovasc Surg 2007; 133: 632–639.CrossRefGoogle ScholarPubMed
Dipchand, AI, Edwards, LB, Kucheryavaya, AY, et al. The registry of the International Society for Heart and Lung Transplantation: seventeenth official pediatric heart transplantation report–2014; focus theme: retransplantation. J Heart Lung Transplant 2014; 33: 985–995.CrossRefGoogle ScholarPubMed
Benden, C, Goldfarb, SB, Edwards, LB, et al. The Registry of the International Society for Heart and Lung Transplantation: seventeenth official pediatric lung and heart-lung transplantation report–2014; focus theme: retransplantation. J Heart Lung Transplant 2014; 33: 1025–1033.CrossRefGoogle ScholarPubMed
Dipchand, AI, Kirk, R, Edwards, LB, et al. The Registry of the International Society for Heart and Lung Transplantation: sixteenth official pediatric heart transplantation report–2013; focus theme: age. J Heart Lung Transplant 2013; 32: 979–988.CrossRefGoogle ScholarPubMed
Farmer, SA, Grady, KL, Wang, E, et al. Demographic, psychosocial, and behavioral factors associated with survival after heart transplantation. Ann Thorac Surg 2013; 95: 876–883.CrossRefGoogle ScholarPubMed
Bell, LE, Bartosh, SM, Davis, CL, et al. Adolescent transition to adult care in solid organ transplantation: a consensus conference report. Am J Transplant 2008; 8: 2230–2242.CrossRefGoogle ScholarPubMed
Oliva, M, Singh, TP, Gauvreau, K, et al. Impact of medication non-adherence on survival after pediatric heart transplantation in the U.S.A. J Heart Lung Transplant 2013; 32: 881–888.CrossRefGoogle Scholar
Petroski, RA, Grady, KL, Rodgers, S, et al. Quality of life in adult survivors greater than 10 years after pediatric heart transplantation. J Heart Lung Transplant 2009; 28: 661–666.CrossRefGoogle ScholarPubMed
RAND. 36-Item Short Form Survey (SF-36) Scoring Instructions. 2017; https://www.rand.org/health/surveys_tools/mos/36-item-short-form/scoring.html. Accessed 1/8/2017, 2017.Google Scholar
Statistics ABo. National health survey: SF-36 population norms. Canberra: ABS, 1995.Google Scholar
Schwartz, GJ, Brion, LP, Spitzer, A. The use of plasma creatinine concentration for estimating glomerular filtration rate in infants, children, and adolescents. Pediatr Clin North Am 1987; 34: 571–590.CrossRefGoogle ScholarPubMed
Costanzo, MR, Dipchand, A, Starling, R, et al. The International Society of Heart and Lung Transplantation Guidelines for the care of heart transplant recipients. J Heart Lung Transplant 2010; 29: 914–956.CrossRefGoogle ScholarPubMed
Pollock-BarZiv, SM, Anthony, SJ, Niedra, R, Dipchand, AI, West, LJ. Quality of life and function following cardiac transplantation in adolescents. Transplant Proc 2003; 35: 2468–2470.CrossRefGoogle ScholarPubMed
Anthony, SJ, Martin, K, Drabble, A, Seifert-Hansen, M, Dipchand, AI, Kaufman, M. Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am J Transplant 2009; 9: 614–619.CrossRefGoogle ScholarPubMed
Shellmer, DA, Dabbs, AD, Dew, MA. Medical adherence in pediatric organ transplantation: what are the next steps? Curr Opin Organ Transplant 2011; 16: 509–514.CrossRefGoogle ScholarPubMed
Dipchand, AI. Current state of pediatric cardiac transplantation. Ann Cardiothorac Surg 2018; 7: 31–55.CrossRefGoogle ScholarPubMed
Hollander, SA, Chen, SR, Luikart, H, et al. Quality of life and metrics of achievement in long-term adult survivors of pediatric heart transplant. Pediatr Transplant 2015; 19: 76–81.CrossRefGoogle ScholarPubMed
Albert, W, Gresch, C, Huelsen, I, Hetzer, R. Long-term quality of life and compliance in young adults after heart transplantation in childhood and adolescence. J Psychosom Res 2005; 58: S63–S63.Google Scholar
Coyne, B, Hallowell, SC, Thompson, M. Measurable outcomes after transfer from pediatric to adult providers in youth with chronic illness. J Adolesc Health 2017; 60: 3–16.CrossRefGoogle ScholarPubMed
White-Williams, C, Jalowiec, A, Grady, K. Who returns to work after heart transplantation? J Heart Lung Transplant 2005; 24: 2255–2261.CrossRefGoogle ScholarPubMed
Statistics ABo. Education and work. Canberra, Australia: Statistics ABo, 2017, p. 6227.Google Scholar
Albert, W, Hetzer, R, Hudalla, A. Heart transplantation in childhood and adolescence – specific problems and long-term results. J Psychosom Res 2012; 72: 469–469.Google Scholar
Dharnidharka, VR, Lamb, KE, Lodhi, SA, Meier-Kriesche, HU. Adolescent age recipients of kidney, heart and lung transplants have significantly worse long-term allograft outcomes than younger age children: a national registry analysis. Am J Transplant 2011; 11: 490–491.Google Scholar
Meaux, JB, Green, A, Nelson, MK, et al. Transition to self-management after pediatric heart transplant. Prog Transplant. 2014; 24: 226–233.CrossRefGoogle ScholarPubMed
Putschoegl, A, Dipchand, AI, Ross, H, Chaparro, C, Johnson, JN. Transitioning from pediatric to adult care after thoracic transplantation. J Heart Lung Transplant 2017; 36: 823–829.CrossRefGoogle ScholarPubMed
Hale, DR, Bevilacqua, L, Viner, RM. Adolescent health and adult education and employment: a systematic review. Pediatrics 2015; 136: 128–140.CrossRefGoogle ScholarPubMed
Hays, RD, Sherbourne, CD, Mazel, RM. The RAND 36-Item Health Survey 1.0. Health Econ 1993; 2: 217–227.CrossRefGoogle ScholarPubMed