Question 12: What do you consider when discussing treatment adherence in patients with Cystic Fibrosis?

Ohn, Mon; Fitzgerald, Dominic A.

doi:10.1016/j.prrv.2017.04.002

Cited by 6 publications

(5 citation statements)

References 30 publications

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“…Riekert 13 and colleagues argued that whilst there were clear benefits to using objective adherence data in an effort to improve treatment adherence, care should be taken to ensure that the data is not used in a pUnitive manner; other studies echo this with the suggestion that reprimanding PWCF is not helpful, even though knowing a patient is non-adherent can be frustrating for clinicians. 17 , 24 A recent review examining the use of digital technology in home monitoring, adherence and self-management in CF 25 described the use of electronic monitoring of adherence via data logging nebulisers as “an area of promise”. However, the authors acknowledged that monitoring alone may not address barriers to adherence and may need to be combined with a more individualised intervention aimed at improving adherence.…”

Section: Discussionmentioning

confidence: 99%

Objective Nebuliser Adherence Data as “Proof” of Adherence in the Management of Cystic Fibrosis: A Qualitative Interview Study

Lumley¹,

Drabble²,

Scott³

et al. 2022

PPA

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Purpose Low adherence to medication via nebulisers is linked to poor clinical outcomes for people with Cystic Fibrosis (PWCF). Advances in technology allow electronic monitoring of nebuliser usage and feedback of objective adherence data to PWCF and clinical teams caring for them. CFHealthHub is a new intervention that collects and displays objective adherence data in easy-to-read formats with the aim of improving nebuliser adherence and health. There is little understanding of how objective adherence data is perceived by PWCF and healthcare professionals (HCPs). Patients and Methods A qualitative study using semi-structured interviews with 22 PWCF and 31 HCPs who had used the CFHealthHub intervention. Results Objective adherence data was welcomed by the majority of PWCF in the sample, and HCP delivering the intervention, because the data allowed PWCF to reflect on patterns of adherence or non-adherence. Ease of use and characteristics of data display were important, particularly the use of a “traffic light” system to allow PWCF to easily see if they were meeting their adherence targets. For PWCF objective adherence data was used as “proof to self”, offering reassurance to high adherers, and a wake-up call to those with lower levels of adherence. It could also provide ‘proof to others’ where PWCF had higher levels of adherence than HCP or family members believed. The data could sometimes change HCP perceptions of PWCF’s identities as poor adherers. Where adherence was not high, data was used to facilitate honest discussions between PWCF and HCPs about how to increase adherence. HCPs perceived that it was important to use the data positively to motivate, rather than criticise, PWCF. Conclusion Objective nebuliser adherence data in CFHealthHub can offer proof of adherence to PWCF and HCPs. It is important to use it constructively to facilitate discussions on how to improve adherence.

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Section: Discussionmentioning

confidence: 99%

Objective Nebuliser Adherence Data as “Proof” of Adherence in the Management of Cystic Fibrosis: A Qualitative Interview Study

Lumley¹,

Drabble²,

Scott³

et al. 2022

PPA

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“…The adherence to hypertonic saline and dornase alfa in children ranged between 55 to 83%, with lower adherence rates in older age group (13–21 years old) . To enhance adherence, it is important for the CF team to understand the factors influencing adherence patterns, such as patient’s perception and understanding of disease, patient’s age, treatment complexity, and family support . The CF team should utilize all available tools to support families and engage in shared decision‐making to optimize success on an individual basis …”

Section: Clinical Use Of Airway Clearance Agentsmentioning

confidence: 99%

Aerosolized agents for airway clearance in cystic fibrosis

Southern

Clancy

Ranganathan

2019

Pediatric Pulmonology

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The outlook for people with cystic fibrosis (CF) has improved considerably as a result of conventional therapies including aerosolized agents for airway clearance. These will continue to play a significant role in maintaining well‐being and improving survival, even as newer agents emerge that correct the underlying CF defect. In this review, we explore the evidence supporting the use of dornase alfa, hypertonic saline, and mannitol in improving mucus clearance in patients with CF from different age groups with differing disease severity. We also discuss the clinical use of these agents in the context of available international guidelines as well as practical considerations in the clinic, highlighting the importance of a multidisciplinary approach and shared decision‐making. Unanswered questions regarding the optimal use of these agents are highlighted.

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Section: Introductionmentioning

confidence: 99%

“…Treatment is daily, time consuming, complex and repetitive, which imposes a heavy burden on affected people and their families [ 5 , 6 ]. These aspects associated with poor knowledge of the disease decrease treatment adherence [ 6 – 8 ]. In turn, low adherence is an important predictor for pulmonary exacerbation [ 8 ] and is related to increased risk of hospitalization [ 9 ] and longer hospital stay [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

Translation, cross-cultural adaptation and psychometric evaluation of the Brazilian version of the Cystic Fibrosis Knowledge Scale (CFKS)

et al. 2021

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Background Information on the level of knowledge about cystic fibrosis (CF) among affected people and their families is still scarce. Objective This study aimed to translate, cross-culturally adapt and analyze the psychometric properties of the Brazilian version of Cystic Fibrosis Knowledge Scale (CFKS). Materials and methods The translation and cross-cultural adaptation involved the stages of translation, synthesis of translations, reverse translation, synthesis of reverse translations, review by a multi-professional committee of experts and pre-testing. The reliability, viability, construct, predictive, concurrent and discriminant validity were investigated. Results The sample consisted of 40 individuals with cystic CF, 47 individuals with asthma, 242 healthcare workers and 81 students from the health area. The Brazilian version of the CFKS presented high internal consistency (α = 0.91), moderate floor and ceiling effects, without differences in the test-retest scores. An analysis of factorial exploration identified three dimensions. Confirmatory factor analysis led to an acceptable data-model fit. There was good predictive validity, with a difference in the scores among all the evaluated groups (p <0.001), as well as good discriminant validity since individuals with asthma had greater knowledge of asthma compared to CF (r = 0.401, p = 0.005; r2 = 0.162). However, there was no difference between the diagnosis time and knowledge about CF (r = -0.25, p = 0.11; r2 = 0.06), either between treatment adherence and knowledge about CF (r = -0.04, p = 0.77; r2 = 0.002). Conclusion The Brazilian version of the CFKS indicated that the scale is able to provide valid, reliable and reproducible measures for evaluating the knowledge about CF.

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Question 12: What do you consider when discussing treatment adherence in patients with Cystic Fibrosis?

Cited by 6 publications

References 30 publications

Objective Nebuliser Adherence Data as “Proof” of Adherence in the Management of Cystic Fibrosis: A Qualitative Interview Study

Objective Nebuliser Adherence Data as “Proof” of Adherence in the Management of Cystic Fibrosis: A Qualitative Interview Study

Aerosolized agents for airway clearance in cystic fibrosis

Translation, cross-cultural adaptation and psychometric evaluation of the Brazilian version of the Cystic Fibrosis Knowledge Scale (CFKS)

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