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

Abstract

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.

Physical Activity and Quality of Life among Patients with Cystic Fibrosis

“…On the other hand, the healthy subjects who participated in the study were more active, with 83% showing strenuous physical activity and 17% presenting medium-intensity activity. Supervised training is more efficient in long-term adherence to the exercise program than an unsupervised or partially supervised exercise program [ 31 , 32 ]. Furthermore, advances in technology have contributed to the engagement of patients with CF in exercise training, as López-Liria et al demonstrated that video games can be an excellent alternative to conventional treatment and recorded high levels of adherence to active components, making the treatment more entertaining [ 33 ].…”

Comparison of Physical Activity and Sedentary Behaviour between Schoolchildren with Cystic Fibrosis and Healthy Controls: A Gender Analysis

“…This is particularly detrimental for CF girls since participation in habitual PA has been shown to slow the rate of decline in lung function, and lower levels of habitual PA may partially explain the poorer survival rate of females with CF [ 32 ]. Although there are studies aimed at finding barriers to PA reported by CF youth [ 15 ], there are no special obstacles in the case of CF girls. However, there are qualitative studies which highlight gender differences in young CF adults about perceptions of living with CF.…”

“…Additional health benefits are the improvement of cardiorespiratory fitness by increasing the endurance and strength of respiratory muscles [ 9 ], bone mineral density [ 13 ], food intake and enhancing nutritional status [ 14 ]. These advances positively influence psychological and emotional dimensions such as self-confidence and sense of control [ 15 ], which stimulate the perception of a better quality of life [ 14 ]. Several reasons have thus made PA an important part of CF therapy and rehabilitation [ 3 , 9 ].…”

“…The literature describes specific barriers for the participation of young people with CF [ 23 ]. A qualitative study by Denford et al [ 15 ] reported tiredness and lack of time of both caregivers and adolescents as the main obstacles, and also the sense of vulnerability associated with the acceptance of the disease and dissatisfaction with PA. Other relevant barriers are the lack of understanding of the disease by teachers and healthcare professionals, which, together with parental reluctance to expose their children to strenuous exercise because of the fear of potential negative effects on their health [ 24 ], induce in children and adolescents a sort of disempowerment, loss of independence and self-imposed isolation that could be behind the inefficacy or lack of motivation in fitting PA into their daily routine [ 25 , 26 ].…”

The Exeter Activity Unlimited statement on physical activity and exercise for cystic fibrosis: methodology and results of an international, multidisciplinary, evidence-driven expert consensus

“…The existing guidelines that are currently used in clinical practice, and informed the topic selections, were also previously identified via an international survey of healthcare professionals in CF. 19 Topics were also informed by current research priorities, as established by the CF community via a Priority Setting Partnership. 20,21 To acknowledge the holistic and simultaneous prescription of both PA and exercise within clinical guidelines, 10,11 these were not separated for the purposes of this consensus.…”