Publication Date

2017-06-26

Availability

Embargoed

Embargo Period

2019-06-26

Degree Type

Thesis

Degree Name

Master of Science (MS)

Department

Psychology (Arts and Sciences)

Date of Defense

2017-05-09

First Committee Member

Steven A. Safren

Second Committee Member

Annette M. LaGreca

Third Committee Member

Andreas Schmid

Abstract

Medical advancements over the last few decades have significantly increased the life expectancy of individuals with cystic fibrosis (CF), but have led to high levels of complexity in the daily treatment regimen, and considerable burden upon patients and caregivers. Currently, the treatment regimen for CF can take between 2 and 4 hours per day. In addition, many studies have shown that adherence to these treatments among adolescents and adults is low; with estimates of approximately 50% or less. Although increasing treatment complexity has been hypothesized as a possible variable influencing adherence, this relationship has not yet been tested in adolescents and adults with CF. In addition, the only existing measure of treatment complexity for CF treatments, the Treatment Complexity Score (TCS) was created based on clinical expertise and has not been validated. Therefore, the two main goals of this study were to: (1) update and better articulate a measure of TCS for CF treatments by using feedback on complexity obtained from 33 adults living with CF, 18 parents of children and adolescents with CF, and 17 healthcare providers from CF clinics; and (2) examine the relationship between the updated TCS and adherence to CF pulmonary medications and airway clearance treatments collected via a Daily Phone Diary from a separate sample of 53 adolescents and adults with CF. Results of the first study indicated that, although there were differences in the average complexity ratings by adults with CF, and providers, the three groups ranked complexity similarly. Additionally, treatment complexity scores calculated using the revised TCS scoring formula were significantly correlated with subjective ratings of these treatments and medications by the stakeholders. The second study assessed the relationship between the revised TCS and adherence in a second sample of 53 adolescents and adults with CF. Results indicated there was no relationship between treatment complexity and adherence in this sample. However, higher treatment complexity was associated with worse Role Functioning scores. Although results of this study did not find a relationship between treatment complexity and adherence, it highlighted the importance of understanding the perspective of different stakeholders involved in the care of individuals living with CF. Specifically, adults with CF, parents, and providers may rate complexity differently at the individual treatment level, but have an overall similar perspective on the complexity rankings of these treatments and medications. This information could be used to facilitate communication between patients, parents, and their providers.

Keywords

cystic fibrosis; medication adherence; treatment complexity; health-related quality of life

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Available for download on Wednesday, June 26, 2019

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