TY - JOUR
T1 - “Not such a kid thing anymore”
T2 - Young adults' perspectives on transfer from paediatric to adult cardiology care
AU - Catena, G.
AU - Rempel, G. R.
AU - Kovacs, A. H.
AU - Rankin, K. N.
AU - Muhll, I. V.
AU - Mackie, A. S.
N1 - Publisher Copyright:
© 2018 John Wiley & Sons Ltd
PY - 2018/7
Y1 - 2018/7
N2 - Background: Transfer of adolescents with congenital heart disease from paediatric cardiology providers to specialized adult congenital heart disease (ACHD) care providers is becoming a standard practice. However, some paediatric cardiologists continue to provide care for their patients into adult life. Little is known about the perspectives of young adult patients who have been transferred to ACHD clinics versus those who continue to receive their cardiology care in paediatric settings. Methods: Content and thematic analysis of structured telephone interviews with 21 young adults age 18–25 (13 transferred to ACHD clinic and 8 who had not transferred) was conducted to identify similarities and differences in patient characteristics of those in ACHD versus paediatric settings. Results: There were no appreciable differences in gender, age, heart disease type, and independence between those transferred to ACHD care versus those not transferred. Participants in both groups were aware of differences between the paediatric and ACHD care settings and providers, with some favouring the familiarity offered by the paediatric setting and providers. Participants had varying views on parental involvement in their care; most of them had attended clinic appointments on their own. Those who had transferred to ACHD care acknowledged that it would take time to adjust to new relationships. Positive perspectives on actual or anticipated transfer to ACHD care included a growing sense of autonomy and responsibility, as well as access to reproductive information relevant to ACHD patients. Conclusions: The absence of patient characteristics distinguishing those in ACHD care versus those still followed in paediatric care suggests that system, provider, and parent factors, rather than patient factors, may account for patients' perspectives on transfer to ACHD care.
AB - Background: Transfer of adolescents with congenital heart disease from paediatric cardiology providers to specialized adult congenital heart disease (ACHD) care providers is becoming a standard practice. However, some paediatric cardiologists continue to provide care for their patients into adult life. Little is known about the perspectives of young adult patients who have been transferred to ACHD clinics versus those who continue to receive their cardiology care in paediatric settings. Methods: Content and thematic analysis of structured telephone interviews with 21 young adults age 18–25 (13 transferred to ACHD clinic and 8 who had not transferred) was conducted to identify similarities and differences in patient characteristics of those in ACHD versus paediatric settings. Results: There were no appreciable differences in gender, age, heart disease type, and independence between those transferred to ACHD care versus those not transferred. Participants in both groups were aware of differences between the paediatric and ACHD care settings and providers, with some favouring the familiarity offered by the paediatric setting and providers. Participants had varying views on parental involvement in their care; most of them had attended clinic appointments on their own. Those who had transferred to ACHD care acknowledged that it would take time to adjust to new relationships. Positive perspectives on actual or anticipated transfer to ACHD care included a growing sense of autonomy and responsibility, as well as access to reproductive information relevant to ACHD patients. Conclusions: The absence of patient characteristics distinguishing those in ACHD care versus those still followed in paediatric care suggests that system, provider, and parent factors, rather than patient factors, may account for patients' perspectives on transfer to ACHD care.
KW - ACHD
KW - congenital heart disease
KW - parent involvement
KW - qualitative research methods
KW - transfer
KW - transition
UR - http://www.scopus.com/inward/record.url?scp=85044450799&partnerID=8YFLogxK
U2 - 10.1111/cch.12564
DO - 10.1111/cch.12564
M3 - Journal Article
C2 - 29574895
AN - SCOPUS:85044450799
SN - 0305-1862
VL - 44
SP - 592
EP - 598
JO - Child: Care, Health and Development
JF - Child: Care, Health and Development
IS - 4
ER -