Risk Factors for Gaps in Cystic Fibrosis Care
Risk factors that may help identify CF patients vulnerable to gaps in care include younger age, insurance status, and geographic change.
Improved Survival in Cystic Fibrosis. More and more individuals with CF are surviving into adulthood; median survival now 41.6 years1
Study: Risk Factors for Gaps During Care Transition. 2013 data from United States CF Foundation Patient Registry (CFFPR). Mean age at transfer: 21.1 years; most (68%) transferred care between 18 and 21 years of age.
Gap Definition, Mean Duration. Gap in care: Time (days) between the last recorded pediatric encounter and the first recorded adult encounter. Mean gap during transfer: 183 days.
Risks for Prolonged Care Gaps. More likely: Age at transfer <18 years, transfer to adult program in different city. Less likely: health insurance, CF complications, positive MRSA culture, liver disease, guideline-oriented care in last year in pediatric care, oral glucose tolerance test.
Risk Factors for Prolonged Care Gaps.
Study Limitations, Caveats. Many eligible individuals lost to follow-up; authors could not evaluate variation across CF programs; results may not generalize to countries with different healthcare systems, however, recent international analysis found no consistent transition policies in 9 other countries.
Implications for Clinical Practice. Most gaps between pediatric to adult care are minimal and so care coordination can help identify those at highest risk. Transition programs like CF RISE could be integrated into routine CF care.5
Need for Standardized CF Guidelines. American Academy of Pediatrics & CF Foundation have recommendations for transfer to adult care among youth with chronic health conditions. No guidelines for care transfer currently exist that are specific to youth with CF. More research is needed about best practices for transfer of care, impact on health outcomes.
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References
- Cystic Fibrosis Foundation. Cystic Fibrosis Foundation 2015 Annual Data Report. Bethesda, MD: Cystic Fibrosis Foundation; 2016. Accessed January 13 2020 at: https://www.cff.org/our-research/cf-patient-registry/2015-patient-registry-annual-data-report.pdf
- Sawicki GS, Ostrenga J, Petren K, et al. Risk factors for gaps in care during transfer from pediatric to adult cystic fibrosis programs in the United States. Ann Am Thorac Soc. 2018;15:234-240.
- Cooley WC, Sagerman PJ; American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011;128:182–200.
- Yankaskas JR, Marshall BC, Sufian B, et al. Cystic fibrosis adult care: consensus conference report. Chest 2004;125: 1S–39S.
- Baker AM, Riekert KA, Sawicki GS, Eakin MN. CF RISE: implementing a clinic-based transition program. Pediatr Allergy Immunol Pulmonol. 2015;28:250–254.
In the US, more and more individuals with CF are surviving into adulthood. In fact >50% of all those with CF are now aged >18 yrs. This means that greater numbers of patients are making the transfer from pediatric to adult care settings-a process that significanlty increases the likelihood of gaps in appropriate CF care. CF-related complications often increase during early adulthood, and gaps in care may negatively impact disease management during this already vulnerable period. In the slides below, we review a new study that has identified risk factors that multidisciplinary care and transition teams may use to identify individuals at greatest risk for these gaps, where gaps are defined as time passed (days) between the last recorded pediatric encounter and the first recorded adult encounter.
