EPS1.9 Question CF: a James Lind Alliance Priority Setting Partnership in cystic fibrosis

Rowbotham, Nicola J.; Smith, Sherie; McPhee, Margaret; Elliott, Z.C.; Rayner, Oli; Leighton, Paul; Daniels, T.; Collins, Sarah; Duff, A.J.A.; Nash, Edward F.; Tabberner, M.; Chandran, S.; Peaple, U.M.; Morley, Richard; Smyth, A.R.

doi:10.1016/s1569-1993(17)30282-5

Cited by 4 publications

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“…Physical activity also has a positive impact on health-related quality of life,6 fatigue10 and psychological well-being 11. The role of physical activity in the management of CF is viewed favourably by both healthcare professionals12 13 and people with CF 14 15. Despite this, like their healthy peers, many children with CF are failing to achieve the national recommended 60 min of daily moderate to vigorous activity,16 17 with levels reducing further throughout adolescence 18.…”

Section: Introductionmentioning

confidence: 99%

Barriers and facilitators to physical activity among children, adolescents, and young adults with cystic fibrosis: a systematic review and thematic synthesis of qualitative research

et al. 2020

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ObjectivesPhysical activity is widely recommended in the treatment and management of cystic fibrosis (CF). Despite the numerous physical and psychological benefits, many young people with CF are not achieving the recommended levels of physical activity. The aim of this systematic review was to identify and synthesise available qualitative investigations exploring the motives for, barriers to and facilitators of physical activity among young people with CF.MethodsThe following six electronic databases were systematically searched: Applied Social Sciences Index and Abstracts (ASSIA), CINAH, EMBASE, MEDLINE, MEDLINE-in-process, PsycINFO up to August 2019. Keywords were used to identify qualitative research that explored engagement in physical activity among young people with CF. Titles and abstracts were screened by two independent reviewers, and potentially relevant articles were retrieved in full. Articles were eligible for inclusion if they employed any qualitative method and recruited participants under the age of 24 years with CF. Risk of bias of included studies was assessed via the Critical Appraisal Skills Programme. Results were synthesised using a thematic approach.ResultsSeven studies met our inclusion criteria and were included in the review. Overall, studies were of moderate to high quality. Thematic synthesis identified nine main themes that encompass motives for, barriers to and facilitators of physical activity among young people with CF. These were (1) Perceptions of physical activity. (2) Value attributed to physical activity. (3) Social influences. (4) Competing priorities. (5) Fluctuating health. (6) Normality. (7) Control beliefs. (8) Coping strategies. (9) Availability of facilities. Previous reviews have been unable to identify intervention characteristics that influence physical activity behaviour.ConclusionsThis review provides detailed information on the physical (biological—clinical), psychological, social and environmental influences on physical activity behaviour, thus providing numerous targets for future interventions. This in turn could facilitate promotion of physical activity among young people with CF.

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Section: Introductionmentioning

confidence: 99%

Barriers and facilitators to physical activity among children, adolescents, and young adults with cystic fibrosis: a systematic review and thematic synthesis of qualitative research

et al. 2020

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“…Physical activity (PA) [1,2] and exercise [3,4] is widely advocated for adolescents with cystic fibrosis (CF). Patients and members of CF multidisciplinary teams (MDTs) consider PA to be a priority in the management of CF [5,6], recognising both its physiological and psychosocial benefits. Whilst studies have sought to identify whether youth's PA levels differ to age-and sex-matched controls, findings remain equivocal.…”

Section: Introductionmentioning

confidence: 99%

Promotion of physical activity for adolescents with cystic fibrosis: a qualitative study of UK multi disciplinary cystic fibrosis teams

et al. 2020

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BackgroundThe Cystic Fibrosis Trust recently published a standards of care document which stated that patients should be given a physical activity (PA) programme based on their motivations, fitness, and willingness to be active. However, there remains much debate regarding the roles and responsibilities for PA promotion, as well as "optimal" recommendations and advice. This study aimed to qualitatively explore cystic fibrosis (CF) multidisciplinary teams (MDTs) advice, recommendations and practices relating to PA promotion for adolescents with CF. MethodSemi-structured interviews were conducted with fifteen members of CF MDTs (11 physiotherapists, two dieticians and two paediatricians). Thematic analysis was used to analyse the data. ResultsMajor themes identified were: 1) structure of MDTs, 2) recommendations relating to intensities, durations and types of PA, and 3) use of exercise testing. Participants reported variation between MDTs in terms of who is responsible for promoting and supporting PA, the nature of advice given to patients, and the use of exercise testing. Participants consistently lacked confidence in their own or others' knowledge to provide standardised recommendations to patients and highlighted that PA promotion and support was often overlooked during busy periods. ConclusionsDespite its importance, PA support and promotion is not always prioritised. MDTs lack confidence in their ability to promote PA. Standardised advice and training relating to optimal intensities, durations and types of PA would provide a baseline from which to individualise advice to each patient and could increase confidence in PA promotion among MDTs.• This study is the first to provide evidence of the urgent need for training and resources to support clinical teams promote physical activity.

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“…Healthcare providers and patients have both indicated that PA is considered a high priority in the treatment of CF, but many questions remain to be answered, as highlighted in the recent James Lind Alliance Priority Setting Partnership in CF in the UK [ 8 ]. However, the views, opinions and practices of pwCF, and their support teams, regarding the promotion of, and engagement in, PA are understudied, limiting the ability to develop effective interventions to promote PA in this population.…”

Section: Introductionmentioning

confidence: 99%

Physical activity for cystic fibrosis: perceptions of people with cystic fibrosis, parents and healthcare professionals

et al. 2020

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BackgroundThe benefits of physical activity (PA) for people with cystic fibrosis (pwCF) are widely accepted, yet how PA is promoted and utilised by pwCF is unclear.MethodAn online questionnaire to explore attitudes, practices and promotion of PA in cystic fibrosis was completed by healthcare providers (HCP), pwCF and parents/caregivers.Results351 respondents (105 HCP, 120 pwCF, and 126 parents/caregivers) from 12 countries completed the survey. Importance of PA was rated highly by the majority of respondents. Physical (e.g. health), psychological (e.g. enjoyment) and social (e.g. social interaction) factors were motives for PA for 82%, 49% and 37% of pwCF, respectively, irrespective of country. Common barriers to PA included time (49% and 36%) and tiredness (61% and 7%) for pwCF and parents/carers, respectively. pwCF also reported psychosocial barriers (e.g. stigma, demoralisation), while parents/caregivers reported structural barriers (e.g. cost). Clinical teams varied substantially in terms of the emphasis placed on PA, facilities available, staff and training, and advice given to pwCF.ConclusionDespite the majority of participants rating the importance of PA highly, substantial variability was evident regarding the facilities and clinical support available to them, as well as why and how people were active. There remains a need to identify what constitutes “best practice” for PA promotion within clinics.

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EPS1.9 Question CF: a James Lind Alliance Priority Setting Partnership in cystic fibrosis

Cited by 4 publications

References 0 publications

Barriers and facilitators to physical activity among children, adolescents, and young adults with cystic fibrosis: a systematic review and thematic synthesis of qualitative research

Barriers and facilitators to physical activity among children, adolescents, and young adults with cystic fibrosis: a systematic review and thematic synthesis of qualitative research

Promotion of physical activity for adolescents with cystic fibrosis: a qualitative study of UK multi disciplinary cystic fibrosis teams

Physical activity for cystic fibrosis: perceptions of people with cystic fibrosis, parents and healthcare professionals

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