Cystic fibrosis (CF) is a progressive disease with no known cure. Advances in diagnosis and treatment have resulted in patients living longer and thus families live with the illness for longer. Treatments are becoming increasingly demanding and are largely performed in the family home. Mothers are often reported to experience greater stress and poorer adjustment than mothers of well children or population norms. Patients and siblings are also reported to display adjustment difficulties. Siblings have rarely been included in research designs. This qualitative study investigates the impact of CF and treatment on eight patients, eight mothers, one father and eight siblings. A family systems perspective was adopted. Each individual was interviewed independently using semistructured interviews. Patients and siblings were aged between 9 and 21 years. Qualitative analyses revealed high levels of non-adherence (intentional and unintentional) and parental involvement in treatment, minimal involvement of siblings, and preferential treatment towards patients. Demanding treatment, coupled with the progressive nature of CF, promote high levels of parental involvement for younger children as well as older teenagers, often due to attempted or actual non-adherence. Siblings may receive less attention while patients' needs take priority. Future development of a measure of adherence suitable for children and adolescents should take into account different motivations for non-adherence, particularly regarding the level of personal control over adherence to treatment. In addition, the potential impact of having a brother or sister with CF should not be underestimated and the needs of siblings should not go unnoticed.
Introduction Physical activity, including structured exercise, is an essential component in the management of cystic fibrosis. The use of telehealth such as video-calling may be a useful method for the delivery of exercise and physical activity interventions, though the feasibility of this remains unknown. Methods Nine patients with cystic fibrosis (three female, six male, 30.9 ± 8.7 years) volunteered to participate. Participants completed an eight-week exercise training intervention conducted via Skype, using personalised exercises, with all sessions supervised by an exercise therapist. Feasibility was assessed by demand, implementation, practicality and acceptability. Changes in anthropometric, pulmonary, physical activity and quality of life variables were also assessed. Results Two male participants withdrew from the study, citing lack of available time. The remaining participants found use of Skype useful, with a mean satisfaction rating of 9/10, and three participants requesting to continue the sessions beyond the duration of the study. Mean compliance with sessions was 68%, with mean duration of sessions being 20 min. A total of 25% of calls suffered from technical issues such as video or audio lags. Anthropometric, pulmonary, physical activity and quality of life variables remained unchanged over the course of the study period. Discussion The use of Skype to deliver an exercise intervention to patients withcystic fibrosis was found to be technologically feasible, and acceptable among participants. Findings have implications for clinical practice and could allow care teams to engage patients remotely in exercise. Further research is required to assess the efficacy of this modality on increasing physical activity and associated health outcomes.
Cardiopulmonary exercise testing (CPET) is viewed by many as the gold standard for assessing exercise capacity in CF, being recommended on an annual basis. However, not all patients undergo CPET for varying reasons. This service evaluation retrospectively reviewed data from 179 (92 male) patients in a single CF centre in the UK to identify such reasons. A total of 75/179 patients underwent CPET, whilst 104/179 did not. Of these 104, 41 patients were ≤ 11 years of age. Of the remaining 63 patients, 26 did not undergo CPET for clinical reasons including needing IV antibiotics, musculoskeletal issues and obesity. Seventeen refused to undergo CPET because of reasons such as an unwillingness to travel and dislike of CPET. Twenty did not undergo CPET for miscellaneous reasons including difficulty contacting patients. Individuals with FEV 1 < 40% predicted were 85.7% less likely to undertake a CPET than individuals with FEV 1 ≥ 70% predicted. Understanding these challenges will assist clinical teams with future implementation of CPET into routine care, by identifying areas for improvement and establishing strategies for enhancing future provision of the test.
Objectives: Exercise and physical activity (PA) are integral for management of CF. However, engaging patients in structured hospital-based exercise regimens is not always possible due to geographical restrictions and risk of cross-infection. Use of telehealth, including video calling, has been proposed to overcome such restrictions. This study assesses the feasibility of using video calling to engage patients in a personalised exercise training programme.Methods: Nine patients (6 male, 3 female) with CF (31 ± 9 y, 67 ± 32 FEV1%Predicted) were recruited to take part in an 8-week personalised exercise training programme, supervised by an exercise therapist and delivered remotely using Skype. Anthropometric data, lung function, quality of life (QoL) and PA were measured before and after the programme, with differences assessed by a one-way repeated measures ANOVA. Feasibility and acceptability were assessed using patients feedback on the use of video calling and technical issues experienced.Results: Seven of nine patients completed the study, completing 59/88 scheduled sessions, with a mean duration of 20 minutes each. There were no reported adverse events during the study. Patients did not attend 29/88 sessions for reasons including illness (n = 13) and work commitments (n = 8). Patients found Skype useful for exercise, with ratings from 7/10 -10/10 (mean 9/10) indicating acceptability. Technical problems were related to connection (8/59), visual (4/59) and sound (3/59) problems and delays/lagging (7/59). Provisional results indicate body mass, BMI, FEV1, QoL and PA were unchanged, indicating maintenance of function. Conclusion:This study has identified video calling as a feasible and acceptable method for engaging patients in exercise for management of CF. These findings suggest that future research and practice could implement the use of video calling for interventions and routine care to support patients, overcome geographical and barriers and maintain function.
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