Transitioning from paediatric to adult services with cystic fibrosis or bronchiectasis: What is the impact on engagement and health outcomes?

Abstract

Aim To determine whether the transfer of young people with cystic fibrosis (CF) or bronchiectasis from paediatric to adult services is associated with changes in service engagement and/or health outcomes. Methods Young people aged ≥15 years of age with CF or bronchiectasis who transferred from the Auckland‐based paediatric service (Starship Children's Hospital) to one of three Auckland‐based District Health Boards between 2005 and 2012 were identified and included if they had 3 years care both pre‐transfer and post‐transfer care. Transfer preparation, service engagement (clinics scheduled, clinics attended) and health outcomes (lung function, hospitalisations) were collected per annum. Results Fifty‐seven young people transferred in this period with 46 meeting inclusion criteria (CF n = 20, bronchiectasis n = 26). The CF group had better transfer documentation, were transferred at an older age (11 months older P < 0.0001 95%CI: 6.7 months, 14.7 months), were 20 times more likely to attend clinics (P < 0.0001, 95%CI: 7.8, 66.1) and had 3–4 more clinics scheduled pre‐transfer (P < 0.0001, 95%CI: 3.4, 4.9) and post‐transfer (P < 0.0001, 95%CI: 2.4, 3.8) despite having less severe respiratory disease as measured by FEV1 for each year (P < 0.01, 95%CI: 0.34, 1.22). Conclusion The transfer of young people with CF to adult services did not affect health engagement or outcomes, in contrast to those with bronchiectasis. Use of a formalised transfer process, more clinic appointments offered and greater resources for CF may be responsible for this difference. Comprehensive transition with purposeful, planned movement and developmentally appropriate care is a key goal.

International consensus statement on quality standards for managing children/adolescents with bronchiectasis from the ERS CRC Child-BEAR-Net

“…Arguably, standards of care are even more important in relatively neglected diseases, where inequity can be frequent and substantial. Bronchiectasis is one such disease, as currently it remains one of the most neglected pulmonary disorders [28], especially in children [29], and a marked inequity exists with other chronic respiratory diseases [10][11][12]. The requirement for better health services and clinical research for improving the lives and outcomes of children and adolescents with bronchiectasis, and the lives of their families, was highlighted recently by an international parent/patient survey of their clinical needs [6].…”

“…Compared to age-matched children with CF, children with bronchiectasis have substantial and significantly poorer lung function, fewer medical reviews, and poorer access to chest physiotherapists [11]. Furthermore, in New Zealand, despite their significantly worse lung function, adolescents with bronchiectasis are also significantly less likely to receive appropriate transition care than those with CF [12]. Indeed, in many countries, children/adolescents with bronchiectasis are still managed as an "add-on" patient group in CF centres.…”

Transition of pediatric patients with bronchiectasis to adult medical care in the Northern Territory: A retrospective chart audit

“…Furthermore, the use of disease-specific transition frameworks from pediatric to adult services have shown to improve the autonomy of individualized care and effective engagement with care providers ( 23 ). However, currently none are available for young people with bronchiectasis or in at-risk populations ( 24 ), such as Australian First Nations people.…”

“…Recently, a small New Zealand study described the inequitable care young people with bronchiectasis received post-transition from pediatric to adult services compared to those with CF ( 24 ). Despite the bronchiectasis cohort having more severe disease, they received less preparation for transition and post-transition care compared to the CF cohort who had improved transition success, with fewer losses to follow up in the health system, and were 20.1 times more likely to attend scheduled post-transition appointments ( p < 0.0001) than the bronchiectasis cohort ( 24 ).…”

Quality standards for managing children and adolescents with bronchiectasis: an international consensus

“…Bronchiectasis is one such example [ 6 ], especially affecting children [ 11 ]. Marked inequity between, and within, countries and among chronic respiratory diseases exist, even in resource-rich countries [ 3 , 10 , 20 ]. The need for better health services and clinical research for improving the lives and outcomes of children and adolescents with bronchiectasis and the lives of their families was made abundantly clear in a recent international parent and patient survey of their clinical needs [ 7 ].…”