Young patients with non-CF bronchiectasis are less prepared than those with cystic fibrosis (CF) to transition from pediatric to adult healthcare services, a study in New Zealand has found.
This difference may be attributed to the lack of standardized transition procedures, specialized healthcare services, and engagement with medical professionals, the investigators suggest.
These findings were reported in the study “Transitioning from paediatric to adult services with cystic fibrosis or bronchiectasis: What is the impact on engagement and health outcomes?,” which was published in the Journal of Paediatrics and Child Health.
Treatment advances in recent years have helped to increase the life expectancy of patients with chronic illnesses, including CF and bronchiectasis, who are now living past childhood and into adulthood. This increased life expectancy means patients need to shift their healthcare service providers when they reach adulthood.
However, research has shown that young patients often find such transfers uncoordinated and have difficulties with the increased responsibility expected in adult care.
To smooth this transition, several institutions have implemented transfer or transition support programs for those with CF, but few exist for patients with bronchiectasis.
In the study, investigators documented how young people with CF and non-CF bronchiectasis in Auckland, New Zealand, go through this healthcare transition process. They also investigated if and how this process would affect the patients’ long-term health outcomes.
“Our hypothesis was that the more comprehensive the process, the more engaged the young person would be following their move to adult health care as determined by clinic attendance, and the better their health would be as determined by lung function and hospitalisation,” the researchers wrote.
The study was based on data from 46 patients, 15 and older, who had been diagnosed with CF (20 patients) or non-CF bronchiectasis (26 patients).
All patients were transferred from the Auckland‐based pediatric healthcare service (Starship Children’s Hospital) between 2005 and 2012 to one of three Auckland‐based district health boards that provide adult respiratory care services — Auckland, Counties Manukau, or Waitemata.
Analyses were performed on six-year healthcare data, which included information gathered in the last three years that patients received pediatric healthcare services, and in the three years after switching to adult services.
Compared to those with bronchiectasis, young CF patients had better transfer documentation, and switched over to adult healthcare services at an older age (mean of 11 months older). Also, CF patients were scheduled to be followed by adult healthcare services five months earlier compared with patients with bronchiectasis.
In addition, CF patients were 20 times more likely to attend clinic appointments before and after switching over, compared to those with bronchiectasis. They had nearly three to four more medical appointments scheduled before and after transitioning to adult care services, even though those with bronchiectasis tended to have more severe lung function impairments.
No statistically significant differences in the mean number of hospitalizations were seen between both groups while receiving pediatric or adult healthcare services.
“Despite having more severe lung disease and being in greater deprivation, the bronchiectasis group were found to have less transfer preparation to adult services with less health care offered and were less engaged with health services compared to CF participants,” the investigators wrote.
“Use of a formalized transfer process, more clinic appointments offered and greater resources for CF may be responsible for this difference,” they added.
The investigators also said that a more comprehensive, purposeful, and carefully planned transition process is needed to overcome these challenges and provide patients with bronchiectasis the best possible care.