Exploring the developmental tasks of emerging adults after paediatric heart transplantation: a cross-sectional case control study

Abstract

Objective: Paediatric heart transplantation (PHTX) comprises 12% of all cardiac transplants and many of the children now survive into adulthood. Only a few studies have investigated the long-term psychosocial well-being of young adult patients after PHTX; no studies have investigated developmental tasks of emerging adulthood in different domains (family, social environment, education and profession, partnership, social environment).

Setting: Specialised heart centre in Germany.

Participants: Thirty-eight young adults aged 22.11 years (SD=4.7) who underwent PHTX and a control group of 46 participants with no known chronic diseases, aged 22.91 years (SD=1.8), participated in the study.

Outcome measures: All participants completed the following questionnaires: sociodemographic, the F-SozU, to measure perceived social support, the Gießener Beschwerde-Bogen to measure subjective complaints experienced by patients, the KIDSCREEN-27 to measure well-being and the SF-36 to measure health-related quality of life (QoL).

Results: 'Family': the quality of the relationship with the parents was found to be equal in both groups, while PHTX patients stayed in closer spatial proximity to their parents. 'Social environment': PHTX patients reported lower social support by peers than the control group. 'Education and profession': PHTX patients most often worked full-time (23%), had no job and/or received a pension (21%). In comparison, most of the healthy controls did an apprenticeship (40%) and/or worked part time (32%). 'Partnership': fewer of the PHTX patients had a partner than the control group while relationship duration did not differ. In exploratory regression analyses, social support by peers predicted physical QoL, whereas physical complaints and the physical role predicted mental QoL in PHTX patients.

Conclusions: Our exploratory findings highlight important similarities and differences in specific developmental tasks between PHTX patients and healthy controls. Future studies should focus on developmental tasks of PHTX patients in this age group more systematically, investigating their role in physical and mental well-being in a confirmatory manner.

Keywords: developmental tasks; heart transplantation; paediatric cardiology; psychosocial; quality of life.

Figure 1

Means of z-transformed scores of the SF-36 physical summary scale and all physical subscales raw values 0–100 of PHTX and control group. PHTX, paediatric heart transplantation; SF-36, Short-Form-36.

Figure 2

Means of z-transformed scores of the SF-36 mental summary scale and all psychological subscales raw values 0–100 of PHTX and control group. PHTX, paediatric heart transplantation; SF-36, Short-Form-36.