Treatment Preference Among People With Cystic Fibrosis

Cameron, Rory; Office, Daniel; Matthews, Jessie; Rowley, Mark; Abbott, Janice; Simmonds, Nicholas J.; Whitty, Jennifer A.; Carr, Siobhán

doi:10.1016/j.chest.2022.07.008

Cited by 22 publications

(12 citation statements)

References 37 publications

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“…This is in line with studies stating that treatment burden is not merely a simple count of types of treatment. 21 , 40 , 41 The way young people experience and cope with treatment burden depends on various factors, such as personal characteristics, social context and resources. 21 For example, more outspoken young people with an extensive social network may find a specific treatment less burdening than less outspoken young people with a limited social network.…”

Section: Discussionmentioning

confidence: 99%

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Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition

Schelven¹,

Meulen²,

Wessels³

et al. 2023

PPA

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Purpose Treatment for a chronic condition can pose a heavy burden on young people and affect their quality of life. The present study examined young people’s experiences with treatment burden and their coping strategies. Patients and Methods The body mapping method was employed, in which a life-sized outline of someone’s body is traced and populated with visual representations, symbols and words. For the present study, a digital tool for body mapping was developed. This is a chat robot which helps young people make a body map by asking questions about their lives, wellbeing and the influence of their treatment on this. In two series of three workshops, ten young people (16 to 25 years) with a chronic, somatic condition created individual body maps using this tool. The body maps were discussed in the group to obtain insight into experiences with treatment burden. The findings were analysed using thematic analysis. In all stages of the study, two adolescents with a chronic condition were involved as co-researchers. Results The results show that young people with a chronic condition experience considerable treatment burden. Although treatment reduces their symptoms, it also leads to physical and emotional side-effects, restrictions of meaningful activities, issues with future planning, reduced independence, and autonomy and loneliness. Young people apply several strategies to cope with this burden, such as seeking support from others, focusing on the positive, ignoring treatment advice, and seeing a psychologist. Conclusion Treatment burden is a subjective experience and not merely based on the number or types of treatment. It is therefore vital that young people with a chronic condition discuss their experiences with their care provider. This can help to tailor treatment decisions to their lives and needs.

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Section: Discussionmentioning

confidence: 99%

“…This is in line with studies stating that treatment burden is not merely a simple count of types of treatment. 21,40,41…”

Section: Discussionmentioning

confidence: 99%

Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition

Schelven¹,

Meulen²,

Wessels³

et al. 2023

PPA

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“…Treatment burden has been identified as a proposed major component of research studies in CF in the coming decades 15,16 . Zemanick and colleagues stated that, “As new treatments are developed for patients with CF, efforts should be made to balance treatment burden with quality of life.” 17 In a 2019 survey of 103 pwCF, respondents were willing to tolerate reductions in lung function and additional years of life expectancy to reduce treatment burden with ACT, or 3.2 years of additional life expectancy to fully stop physiotherapy 18 …”

Section: Discussionmentioning

confidence: 99%

Airway clearance after highly effective CFTR modulators: Normalizing life and reducing treatment burden

Goetz

Frederick

Pérez

et al. 2023

Pediatric Pulmonology

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Objectives Airway clearance therapy (ACT) is an important component of therapy for cystic fibrosis (CF) but is associated with significant treatment burden. Highly effective CFTR modulator therapy (HEMT) has improved pulmonary function for many people with CF (pwCF). We sought to understand changes in attitudes and practices about ACT in the post‐HEMT era. Study Design Surveys of CF community members and CF care team members. Methodology Separate surveys were created for the CF community and CF care providers to evaluate attitudes towards ACT and exercise in the post‐HEMT era. We solicited answers from pwCF via the CF Foundation's Community Voice and from CF care providers via CF Foundation listservs. Surveys were available between July 20 and August 3, 2021. Results Surveys were completed by 153 community members (parents of children and pwCF) and 192 CF care providers. Belief that exercise can substitute partially for ACT was endorsed similarly by community members (59%) and providers (68%). After starting HEMT, 36% of parents of children and 51% of adults did fewer ACT treatments including 13% who stopped ACT. Adults reported altering their ACT regimen more than parents of children, though the sample size was limited. Half of providers had changed their ACT recommendations for those on HEMT. Fifty‐three percent of respondents had discussed changing ACT with their care team (36% of parents, 58% of pwCF). Conclusions Providers should be aware that ACT management changes may have been undertaken by pwCF who have pulmonary benefits of HEMT. Treatment burden should be considered in co‐management decisions regarding ACT and exercise.

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“…Due to this step-change improvement in treatment outcomes the continued need for ACTs and nebulised mucolytics or antibiotics has been questioned. Surveys of people with CF in the HEMT-era have confirmed that reducing treatment burden is a priority13 and that ACTs and nebulised antibiotics are the treatments they wish to simplify the most 14. Lived experience pre-ETI was described as challenging by many with individuals striving for equality and expressing a wish to be able to access the same opportunities as healthy people 3.…”

Section: Introductionmentioning

confidence: 99%

Exploring the impact of elexacaftor-tezacaftor-ivacaftor treatment on opinions regarding airway clearance techniques and nebulisers: TEMPO a qualitative study in children with cystic fibrosis, their families and healthcare professionals

et al. 2022

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BackgroundCystic fibrosis (CF) is a genetic condition caused by variants in the cystic fibrosis transmembrane conductance regulator (CFTR) gene that primarily impacts the lungs. Treatments historically have been symptomatic to improve airway clearance and treat infection. However, CFTR modulator drugs have recently been developed that target the underlying defect. The triple combination of elexacaftor-tezacaftor-ivacaftor (ETI) was approved in 2020 in England for over 80% of people with CF aged over 12 years and in 2022 extended to those over 6 years. ETI treatment is associated with substantial improvements in lung function. The experience of children with CF starting on ETI or their views regarding future treatments have not been well studied. This study aimed to explore the opinions of children with CF, their parents/carers and healthcare professionals (HCPs) on the impact of ETI, airway clearance techniques (ACTs) and nebulised treatments.MethodsSemistructured qualitative interviews were performed with 10 children with CF, 7 parents/carers and 10 HCPs. Audio recordings were transcribed and analysed using reflexive thematic analysis.ResultsFour main themes were identified: ‘Kaftrio changed my life’, ‘Your entire life is dictated by the CF timetable’, ‘Simplifying treatment-hopes and fears’ and ‘Kaftrio is a game-changer’ along with several subthemes and an overarching theme of ‘I still can’t get my head around how three tablets can do what Kaftrio done’.ConclusionsDespite the highly positive impact of ETI on the health of children with CF some concerns remain about the longer-term outcomes of reducing ACTs or nebulised treatments. ETI has prompted a shift in treatment for many and offers an opportunity to personalise approaches.

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Treatment Preference Among People With Cystic Fibrosis

Cited by 22 publications

References 37 publications

Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition

Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition

Airway clearance after highly effective CFTR modulators: Normalizing life and reducing treatment burden

Exploring the impact of elexacaftor-tezacaftor-ivacaftor treatment on opinions regarding airway clearance techniques and nebulisers: TEMPO a qualitative study in children with cystic fibrosis, their families and healthcare professionals

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