# Factors for poor adherence among adults with Cystic Fibrosis

> **NIH AHRQ R03** · FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH · 2021 · $49,946

## Abstract

Abstract
Poor adherence to self-care guidelines among adults with cystic fibrosis (CF) reduces quality of life, accelerates
lung function decline, increases rate of pulmonary exacerbations and hospitalizations, and leads to earlier death.
Prior research has shown that poor adherence for adults with CF includes: the high burden of care linked to daily
treatment regimen; health beliefs about treatment efficacy; and poor mental health. Further, pilot data from our
study at Northwell Health showed poor adherence to be associated with lack of access to medications and
devices, and lack of skills needed to correctly perform the treatments. We also found that social isolation among
CF adults may be further exacerbating depression, anxiety and adherence. While these factors are each
associated with poor adherence in general, not all of them may be relevant for each particular patient. Studies
in other chronic disease populations have determined that the wider social contexts of patients, particularly the
members of their social networks, can impact adherence in various ways. Although it is known that a person's
social environment influences health decisions, we do not yet understand what specific components of a person's
social network influence adherence to treatment recommendations for CF adults. The proposed exploratory
study will use methods from qualitative research and social network analysis (SNA) to define influential
components of social networks impacting adherence. Our conceptual model will be the Network Episode Model
(NEM) which sees health and illness behaviors as embedded in social processes that create an illness career
or trajectory. This model emphasizes the importance of health discussion networks, and the multiple and
dynamic pathways that individuals and their social networks follow in response to the onset of an illness.
We will recruit 30 CF adults to participate in the study and administer closed ended surveys covering: socio-
economic status, health, and adherence. Adherence will also be tracked using prescription refill history. SNA-
based name generating questionnaires and the validated McGill Illness Narrative Interview modified for CF
adherence will be administered to map participants' social networks. We will then undertake thematic analysis
of the qualitative data and conduct statistical analysis of quantitative data using social network analysis to look
for associations between adherence and other variables. Our goal is build a preliminary social network based
statistical model for CF adherence that can be tested over multiple time-points among a much larger sample size
in a future study, and which may be applicable to other adherence for other chronic lung diseases (asthma,
COPD). This work fulfills AHRQ's mission to improve health care quality outcomes by providing integrated
coordinated whole-person 360-degree care. It seeks to do this using social network analysis to understand the
wider social-contextual factors leadi...

## Key facts

- **NIH application ID:** 10111543
- **Project number:** 5R03HS026970-02
- **Recipient organization:** FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH
- **Principal Investigator:** Melissa Basile
- **Activity code:** R03 (R01, R21, SBIR, etc.)
- **Funding institute:** AHRQ
- **Fiscal year:** 2021
- **Award amount:** $49,946
- **Award type:** 5
- **Project period:** 2020-03-01 → 2022-02-28

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10111543

## Citation

> US National Institutes of Health, RePORTER application 10111543, Factors for poor adherence among adults with Cystic Fibrosis (5R03HS026970-02). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10111543. Licensed CC0.

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