Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents

Abstract

The aim of this study was to assess the expectations of adolescents with chronic disorders with regard to transition from pediatric to adult health care and to compare them with the expectations of their parents. A cross-sectional study was carried out including 283 adolescents with chronic disorders, aged 14-25 years (median age, 16.0 years), and not yet transferred to adult health care, and their 318 parents from two university children's hospitals. The majority of adolescents and parents (64%/70%) perceived the ages of 18-19 years and older as the best time to transfer to adult health care. Chronological age and feeling too old to see a pediatrician were reported as the most important decision factors for the transfer while the severity of the disease was not considered important. The most relevant barriers were feeling at ease with the pediatrician (45%/38%), anxiety (20%/24%), and lack of information about the adult specialist and health care (18%/27%). Of the 51% of adolescents with whom the pediatric specialist had spoken about the transfer, 53% of adolescents and 69% of parents preferred a joint transfer meeting with the pediatric and adult specialist, and 24% of these adolescents declared that their health professional had offered this option. In summary, the age preference for adolescents with chronic disorders and their parents to transfer to adult health care was higher than the upper age limits for admission to pediatric health care in many European countries. Anxiety and a lack of information of both adolescents and their parents were among the most important barriers for a smooth and timely transfer according to adolescents and parents. Abstract The aim of this study was to assess the expectations of adolescents with chronic disorders with regard to transition from pediatric to adult health care and to compare them with the expectations of their parents. A cross-sectional study was carried out including 283 adolescents with chronic disorders, aged 14-25 years (median age, 16.0 years), and not yet transferred to adult health care, and their 318 parents from two university children's hospitals. The majority of adolescents and parents (64%/70%) perceived the ages of 18-19 years and older as the best time to transfer to adult health care. Chronological age and feeling too old to see a pediatrician were reported as the most important decision factors for the transfer while the severity of the disease was not considered important. The most relevant barriers were feeling at ease with the pediatrician (45%/38%), anxiety (20%/24%), and lack of information about the adult specialist and health care (18%/ 27%). Of the 51% of adolescents with whom the pediatric specialist had spoken about the transfer, 53% of adolescents and 69% of parents preferred a joint transfer meeting with the pediatric and adult specialist, and 24% of these adolescents declared that their health professional had offered this option. In summary, the age preference for adolescents with chronic disorders and their parents to tra...

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

“…Advances in treatment/technology mean that these young people are now more likely than ever to reach adulthood [2]. This will at some point, require them to assume a greater degree of independence and self-care than previously encountered [3], in addition to transferring from paediatric to adult services for ongoing healthcare [4]. The need for effective transitional care and the benefits this provides in terms of maintaining engagement with healthcare throughout the life course and improving health outcomes is well established [5].…”

Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis

“…Increasing numbers of adolescents with life-threatening conditions are surviving into adulthood, and consequently more of them will experience the transfer from paediatric to adult care (Rutishauser et al, 2011, Tong et al, 2008. The prevalence of chronic conditions in adolescence ranges from 7% to 15% (Michaud et al, 2004), and transition to adult care has thus become an important issue (Bell and Sawyer, 2010, Hersh et al, 2009, Tuchman et al, 2010.…”

“…Patients and families find it hard to leave the familiar paediatric environment (Alpay, 2009, Anthony et al, 2009, Rutishauser et al, 2011, health-care professionals in paediatric settings express mixed feelings about relinquishing responsibility for patients (Clarizia et al, 2009), and staff on adult wards are not always properly prepared to receive the transferred young patients (Peter et al, 2009, Rapley and Davidson, 2010, Suris et al, 2009.…”

“…In the midst of these transitions, adolescents with chronic conditions also experience being transferred from paediatric to adult health care (McLaughlin et al, 2008). Research on transfer and transition is mostly based on surveys and other quantitative methods, but exploring the experiences of transfer using a qualitative approach can capture a deeper understanding of young adults' own challenges (Rutishauser et al, 2011). The strength of a qualitative approach is that it explores subjective experiences; it discovers patterns and variations from which hypotheses can emerge (Polit and Beck, 2010).…”

“…The onset of preparation for transfer at 16 years seems to be appropriate, while the age of 18-19 years and older is estimated as the best time (McDonagh and Kelly, 2010). The issue of maturity is supported by neuroscience research that indicates that adolescent brain development extends into the early 20s (Johnson et al, 2009, Rutishauser et al, 2011. Care for the young adult should therefore be based on a combination of the patient's individual needs and biological age (Rapley and Davidson, 2010).…”