Lost in translation? How adults living with Cystic Fibrosis understand treatment recommendations from their healthcare providers, and the impact on adherence to therapy

Pakhalé, Smita; Baron, Justine; Armstrong, Michael B.; Tasca, Giorgio A.; Gaudet, Ena; Aaron, Shawn D.; Cameron, D. William; Balfour, Louise

doi:10.1016/j.pec.2016.03.023

Cited by 9 publications

(6 citation statements)

References 32 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…It is important to identify which educational methods are most effective because understanding treatment recommendations has been linked to a 70% selfreported adherence rate in PwCF. 10 This study confirms the importance of including patient preferences to inform CF app development.…”

Section: Science and Practicesupporting

confidence: 75%

“…1,6,7 Challenges with medication and other therapies for PwCF are well documented in the current medical literature. 3,4,[8][9][10][11][12][13] Regimens often include complex administration directions at multiple occasions, totaling 2-3 hours daily. 11,12 The complex therapies cited include inhaled nebulized medications, physiotherapy, and pancreatic enzymes.…”

mentioning

confidence: 99%

“…12,13 Nonadherence is associated with increased hospitalization, work or school absence, and poor disease prognosis. 3,10 Establishing care within a multidisciplinary CF care team is recommended to promote healthy medication-taking behaviors, encourage wellness, and prevent disease burden in PwCF. 1,2 Continual education from an integrative CF care team engages patients in their health care decisions, although the current literature does not define patient preferences for education.…”

mentioning

confidence: 99%

See 2 more Smart Citations

Characterizing medication management and the role of pharmacists in caring for people living with cystic fibrosis: A work system approach

Abraham¹,

LeMay²,

Nixon³

et al. 2021

Journal of the American Pharmacists Association

View full text Add to dashboard Cite

Background: Cystic fibrosis (CF) is an autosomal recessive genetic disease requiring complex, lifelong medication regimens. Given the importance of medication in CF treatment, pharmacists are vital CF care team members in the care of people living with CF (PwCF). Objectives: This study aimed to (1) define patients' CF medication experiences and educational needs and (2) investigate the CF outpatient clinic and community pharmacist's role in addressing patient challenges. Methods: A work system approach informed by the Systems Engineering Initiative for Patient Safety (SEIPS) model was used to characterize knowledge and perception of CF medication regimens, educational modalities, and pharmacist interactions for PwCF. Semistructured interviews were conducted with adults living with CF at a CF center clinic. Data analyses identified relationships between the themes in the data and 4 SEIPS work system domains: tasks, tools and technology, person, and environment. Results: Thirty PwCF interviews highlighted 4 themes regarding health care experiences: (1) medication use experience, (2) medication education needs, (3) disease experience, and (4) pharmacist and pharmacy interactions. Patients reported complex medication regimens leading to challenges with medication adherence, although the benefit of treatment was recognized. Although a high level of disease-state knowledge was identified among the participants, PwCF desired to learn about CF medication benefits and adverse effects through credible sources using multiple modalities. Many reported a benefit of pharmacist involvement in their care. Conclusion: Pharmacists are well-positioned to support PwCF in adherence, medication regimen management, and medication education. Opportunities exist for growth in these supportive roles of a pharmacist in both community and outpatient clinic settings.

show abstract

Section: Science and Practicesupporting

confidence: 75%

mentioning

confidence: 99%

mentioning

confidence: 99%

See 1 more Smart Citation

Characterizing medication management and the role of pharmacists in caring for people living with cystic fibrosis: A work system approach

Abraham¹,

LeMay²,

Nixon³

et al. 2021

Journal of the American Pharmacists Association

View full text Add to dashboard Cite

show abstract

“…A range of qualitative studies, which have mainly used a thematic approach to analysis, and reviews have attempted to understand the factors influencing adherence to treatment in CF for adolescents and adults (Abbott, Havermans, & Hart, ; Arias‐llorente, García, & Martín, ; Foster et al ., ; George et al ., ; Hogan, Bonney, Brien, Karamy, & Aslani, ; Hoo, Boote, Wildman, Campbell, & Gardner, ; Horky, Sherman, Laura, Polvinen, & Rich, ; Lask, ; Macdonald et al ., ; Pakhale et al ., ; Sawicki, Heller, Demars, & Robinson, ). These have tended to find that adherence to treatment is reported to be influenced by the extent of treatment burden, having the time to do treatment, having a routine, forgetting to do treatment, a person's identity, perceptions of control, and social support.…”

Section: Introductionmentioning

confidence: 99%

Adherence to medication in adults with Cystic Fibrosis: An investigation using objective adherence data and the Theoretical Domains Framework

Arden

Drabble

O’Cathain

et al. 2019

British J Health Psychol

View full text Add to dashboard Cite

Objectives Adherence to nebulizer treatment in adults with Cystic Fibrosis ( CF ) is poor, and interventions are needed. This research aimed to identify the factors affecting nebulizer adherence using the Theoretical Domains Framework (TDF) and to compare these for participants with different levels of adherence. Design Data‐prompted interviews using the TDF. Methods Eighteen semi‐structured interviews were conducted with adults with CF during which objectively measured adherence data were discussed. Framework analysis was used to code the data into TDF domains, and inductive qualitative content analysis was used to code different beliefs and experiences. Aspects of the TDF that differed between participants with different adherence levels were explored. Results Factors influencing adherence to treatment included all 14 domains of the TDF , 10 of which appeared to vary by adherence level: Skills; Memory and decision‐making; and Behavioural regulation; Environmental context and resources; Social influences; Beliefs about consequences; Beliefs about capability; Reinforcement; Social role and identify; Intentions; Optimism; and Emotions. Conclusions This study is the first to use objectively measured adherence data in a data‐prompted interview using the TDF framework to systematically assess the full range of factors potentially influencing adherence. The results highlighted that interventions need to consider issues of capability, opportunity, and motivation. Interventions that challenge dysfunctional beliefs about adherence and which support the development of routines or habits and problem‐solving may be particularly useful for adults with CF . Statement of contribution What is already known? Adherence to medication in adults with cystic fibrosis is poor. Previous research has identified a range of contributing factors in relation to subjective reports of adherence. There is a wide discrepancy between self‐reported adherence and objectively measured adherence. What this study adds A data‐prompted interview using objectively measured adherence data enabled the systematic assessment of potential factors that could be targeted in an intervention to increase adherence. There were some differences in the factors that were identified by high and low adherers. There is not one‐size fits all intervention for adherence to medication in cystic fibrosis.

show abstract

“…sputum); 23 this can contribute to issues with treatment adherence which is commonly poor in this population. 24 – 26 Such experiences can act as significant barriers to achieving optimal patient care and health outcomes.…”

Section: Introductionmentioning

confidence: 99%

Stigma-related experiences in non-communicable respiratory diseases: A systematic review

et al. 2017

View full text Add to dashboard Cite

The stigma of non-communicable respiratory diseases (NCRDs), whether perceived or otherwise, can be an important element of a patient’s experience of his/her illness and a contributing factor to poor psychosocial, treatment and clinical outcomes. This systematic review examines the evidence regarding the associations between stigma-related experiences and patient outcomes, comparing findings across a range of common NCRDs. Electronic databases and manual searches were conducted to identify original quantitative research published to December 2015. Articles focussing on adult patient samples diagnosed with asthma, chronic obstructive pulmonary disease (COPD), cystic fibrosis, lung cancer or mesothelioma, and included a measurement of stigma-related experience (i.e. perceived stigma, shame, blame or guilt), were eligible for inclusion. Included articles were described for study characteristics, outcome scores, correlates between stigma-related experiences and patient outcomes and methodological rigor. Twenty-five articles were eligible for this review, with most (n = 20) related to lung cancer. No articles for cystic fibrosis were identified. Twenty unique scales were used, with low to moderate stigma-related experiences reported overall. The stigma-related experiences significantly correlated with all six patient-related domains explored (psychosocial, quality of life, behavioral, physical, treatment and work), which were investigated more widely in COPD and lung cancer samples. No studies adequately met all criteria for methodological rigor. The inter-connectedness of stigma-related experiences to other aspects of patient experiences highlight that an integrated approach is needed to address this important issue. Future studies should adopt more rigorous methodology, including streamlining measures, to provide robust evidence.

show abstract

Lost in translation? How adults living with Cystic Fibrosis understand treatment recommendations from their healthcare providers, and the impact on adherence to therapy

Cited by 9 publications

References 32 publications

Characterizing medication management and the role of pharmacists in caring for people living with cystic fibrosis: A work system approach

Characterizing medication management and the role of pharmacists in caring for people living with cystic fibrosis: A work system approach

Adherence to medication in adults with Cystic Fibrosis: An investigation using objective adherence data and the Theoretical Domains Framework

Stigma-related experiences in non-communicable respiratory diseases: A systematic review

Contact Info

Product

Resources

About