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Published on: April 11, 2018
Predictors of frequency of CF care in the US Cystic Fibrosis Foundation Patient Registry
Alexandra C Hinton1,2, Edmund H Sears3, Jonathan B Zuckerman3
1Center for Interdisciplinary Population and Health Research, MaineHealth Institute for Research, Scarborough, Maine, United States of America.
Insights
Gaps in cystic fibrosis (CF) care are common, especially for males, non-white individuals, and the uninsured. Understanding these disparities is crucial for improving CF care and outcomes for all patients.
Area of Science:
- Pulmonary Medicine
- Health Services Research
- Clinical Epidemiology
Background:
- Prolonged gaps in care (>12 months) are frequent among people with cystic fibrosis (pwCF).
- These care gaps are linked to reduced lung function and poorer health outcomes.
- Identifying patient-level predictors of visit frequency is essential for optimizing care and ensuring equitable treatment.
Purpose of the Study:
- To identify sociodemographic and disease-related factors associated with visit frequency in pwCF.
- To analyze how these factors influence visit frequency across different age groups.
- To inform strategies for reducing care gaps and improving health equity in CF care.
Main Methods:
- An observational cohort study utilizing data from 2004-2016 from the US Cystic Fibrosis Foundation Patient Registry.
- Inclusion of 28,588 pwCF aged 6-60 years.
- Multivariable longitudinal semiparametric regression modeling to analyze the relationship between patient characteristics and between-visit interval (BVI).
Main Results:
- Males and non-white individuals exhibited longer BVIs compared to females and white individuals, respectively, with disparities most pronounced in young adults.
- Uninsured individuals over age 25 had significantly longer BVIs (≥30 days) than insured patients.
- While most insured individuals adhered to guidelines, adults without CF complications had longer BVIs (≥110 days) from age 23-56.
Conclusions:
- Less frequent clinic visits in males, non-white individuals, and uninsured patients may indicate patient preference or structural barriers to care.
- Frequent visits among those with CF complications likely reflect higher healthcare needs.
- These findings highlight critical risk factors for care gaps that should guide revisions to CF care recommendations to promote equitable outcomes.
Introduction:
Prolonged gaps in care of >12-months are frequent among people with cystic fibrosis (pwCF) and are associated with reduced lung function. Comprehensive analysis of patient-level predictors of visit frequency is needed to optimize protocols for stable pwCF and identify subgroups at high risk of gaps and poor outcomes, promoting equitable treatment for all pwCF.
Objective:
To determine sociodemographic and disease-related factors predictive of visit frequency in pwCF and to assess how these effects vary across the lifespan.
Methods:
We conducted an observational cohort study using data from 2004-2016 for pwCF aged 6-60 years in the US Cystic Fibrosis Foundation Patient Registry. We modeled the relationship between patient-level characteristics and between-visit interval (BVI) using multivariable longitudinal semiparametric regression. BVI was defined as the number of days from the index encounter to the previously recorded visit.
Results:
The study included 28,588 pwCF with 859,568 encounters. Overall, 55% of visits occurred within 90 days of the prior visit, adhering to national guidelines. On average, adults without common CF-complications attended clinic approximately every 4 months, with a BVI ≥ 110 days from age 23-56. Males attended clinic less frequently than females (9.8% longer BVI; 95% CI 9.1%, 10.5%; p<0.001), as did non-white individuals (3.6% longer BVI than whites; 95% CI 2.2%, 5.0%; p<0.001), with the greatest differences seen in young adults. Those with public and private insurance largely adhered to current guidelines (maximum average BVI of 90 and 95 days, respectively). In contrast, uninsured individuals over age 25 had a mean BVI ≥ 30 days longer than the insured.
Conclusions:
Frequent visits in those with CF-complications likely reflects higher need, while less frequent visits in male, non-white, and uninsured individuals may reflect patient-preference or structural barriers to care. Risk factors for gaps in care should inform changes to CF care recommendations going forward.
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