Exercise and physical activity are essential components for the management of individuals with Cystic Fibrosis (CF) and recommended in clinical practice guidelines 1. With the increasing use of telehealth for health care delivery 2, there is further need for telehealth models of care that include physiotherapy and exercise training to help overcome historical challenges of infection control with face-to-face and group activities 3. To our knowledge, no telehealth exercise intervention trials for adults with CF have included people with CF (pwCF) in the intervention design process. Consumer involvement is an essential component of CF health care delivery and intervention design, in order to increase patient engagement and uptake of interventions 2, 4. Therefore, the aim of this study was to co-design and develop a telehealth exercise model of care for adults with CF. Live, synchronous online supervised exercise group session with other adults who have CF, run by a CF physiotherapist. An individual physiotherapist prescribed an exercise program to complete independently. A CF Physiotherapist would check in with participants regularly, with an option to attend weekly group peer support sessions where they could discuss their exercise programs. To evaluate the acceptability of the exercise program options, 10–15 adults (18 years or older) with a formal diagnosis of CF were sought to participate in online focus groups (Alfred Hospital Ethics Approval 620/21). Participants from a previous interview study 5 were first invited to take part in the focus groups. To ensure the target sample size for this co-design was met, additional participants were purposefully sampled from the hospital CF Service according to a range of ages, disease severity, and residence in metropolitan or regional areas. Potential participants were identified by the treating CF physiotherapist in the inpatient or outpatient setting by screening their medical record. They were provided with detailed information about this study, including the PICF, and invited to participate. Researchers used a semi-structured focus group guide with open ended questions to guide the discussions. Feedback from early focus groups was incorporated into discussions within subsequent groups. After all focus groups were concluded, each de-identified focus group transcript was analyzed by two researchers (M.P. and A.W.J.) independently using an iterative categorization of data into a pre-defined framework based on key components identified in previous literature (program options and timing, assessment, monitoring, timing, peer support) 5. Disagreements were resolved by discussions amongst the research team. Three focus groups (4−5 participants each) were conducted in 14 adults with CF (8 females) aged from 22 to 59 years with lung function ranging from 35% to 120% FEV1 predicted (Table 1). Five of these participants had previously participated in the earlier interview study that informed the design of telehealth exercise program options. During focus groups, there was no consensus on the optimal format for the telehealth exercise program, with benefits reported for both options, and emphasis on matching the format to an individual's needs. Therefore, a telehealth exercise program model of care was developed to incorporate a choice of exercise program options discussed in the focus groups (Figure 1). Findings of the focus groups are presented according to our pre-defined framework below, and illustrative quotes are provided in the online supplement (Table S1). All participants agreed that the exercise trainer should have an understanding of CF. Preferences around the timing and duration of a telehealth exercise program were variable. The majority of participants stated that they would want the exercise program to be available to them on demand, rather than at a specific time point, such as post-hospitalization. Preferences regarding program duration were also variable. As a result, a duration of 12 weeks was selected for the final model, to be consistent with the current frequency of CF outpatient physiotherapy review and minimize the burden of attendance to the hospital. Participants reported benefits in the accountability of attending a live, supervised exercise class, leading to increased exercise participation. Being able to interact with other pwCF was also a positive component to this option, with some participants reporting that social interactions increased their motivation for exercise. However, there were some participants who preferred to exercise alone. Potential difficulties with scheduling a group exercise class around differing participant schedules were identified as a possible barrier. Participants agreed that the ability to tailor the exercise program to individual pwCF was a key benefit of this program option. Participants reported increased accountability and motivation to exercise when being monitored by a physiotherapist. Having options for the format of the check in sessions with the physiotherapist, such as telephone, email, text messaging, or video call, was requested by some individuals. All participants were agreeable to attend a face-to-face physiotherapy assessment prior to and following a telehealth exercise program, with a preference for these to be linked to other appointments in the hospital to minimize travel. Preferences around measuring physical exercise capacity ranged from physical assessments to functional performance and quality of life measures. There were several participants who stated that they would not want to complete a maximal exercise test. Some participants reported that they would want the exercise assessment to be tailored to their exercise goals and preferences, for example, completing a strength test versus a cardiovascular test. All participants agreed that the assessment should include a discussion around goal setting and individual exercise preferences in order to customize their exercise program. All participants saw value in monitoring exercise progress. Some participants preferred to focus on exercise participation measurements (e.g., number of sessions completed) or health-related quality of life, while other participants preferred to monitor progress based on their performance and progression with exercise over time. Some pwCF in the focus groups reported positive experiences using wearable exercise trackers to monitor exercise. Minimizing the time required to report on exercise progress was important to participants. All participants reported value in the addition of a peer support group to an online exercise program. All focus groups suggested including a messaging group chat where participants could discuss their exercise participation with others, and find motivation and encouragement. We have developed a novel telehealth model of care in collaboration with pwCF (Figure 1). Participants in this telehealth model of care will have a choice of participating in an individual exercise program with weekly check in sessions with a CF Physiotherapist via telehealth or attending a live supervised telehealth exercise group run by a CF Physiotherapist. Both options will have access to a peer support messaging group. The duration of exercise programs in the model of care will be 12 weeks, and participants will complete a physiotherapy assessment before and after program completion. Program duration in the final design was decided by the investigator team to align with the range of durations discussed by participants in the focus groups (4−12 weeks) and the frequency of current outpatient clinic appointments. With the use of telehealth and technology increasing in the management of pwCF, and changing models of care for CF with the emergence of gene modulator therapies, robust models of telehealth for CF care delivery are the way of the future 2. To our knowledge, this is the first study to use a co-design process to develop a telehealth exercise model of care for adults with CF. It was clear during the co-design process that there was no one-size-fits-all approach for developing an online exercise program for adults with CF. This led to the development of a model of care rather than a single intervention, to allow for choice and provide options for customization. By incorporating the end-user into the design process, we anticipate that the model will be acceptable to participants, thus promoting uptake of the intervention. This novel telehealth exercise model of care will be evaluated in a future study for its acceptability, safety, and potential for clinical benefit. Including a peer support group is a unique component of our telehealth exercise model of care. Due to current infection control standards, face-to-face interactions between people with CF are no longer recommended due to the risks of cross-infection. Providing peer support in a virtual format will therefore allow adults with CF to interact with one another, without the risks of cross-infection 2, 4. Providing adults with CF the opportunity to interact with their peers may increase their accountability and motivation to exercise 5. Using a purposive sample of adults with CF to co-design this telehealth exercise model of care is a key strength of this study design. By considering the perspectives across different genders, age groups, lung function levels, and other social demographics, the final telehealth exercise model of care will be acceptable to a wide range of people with CF accessing local CF services. The focus groups included participants who were involved in a prior interview study, meaning we had some adults with CF involved in the entire design process. Having two different researchers facilitate the focus group discussions (one without prior clinical relationships to participants) increases the methodological strength of the study and adds value to the co-design process. We acknowledge that the focus group participants were only presented with two potential exercise program options, but these were informed by our previous qualitative work 5, and the perspectives of the current participants were used to determine the acceptability of these options and further develop and refine program content. This study was conducted across a group of adults with CF from a single center in Victoria, Australia. The results should be applied with caution to other countries and disease groups. For example, the duration of exercise programs in the final design was influenced by the perspective of the specific participants in this study and the local context, including the current frequency of outpatient review of adults with CF. Additionally, due to the geographical nature of CF clinics in Australia, telehealth is potentially used much more frequently to deliver CF care compared to other countries. This telehealth exercise model of care was co-designed with people who have prior experience using telehealth, and it may be more acceptable to them. A novel telehealth exercise model of care for adults with CF has been developed in collaboration with people living with CF. Rather than a one-size-fits-all approach, this model of care was refined and finalized as a choice of exercise programs consisting of an independent program with check-ins via telehealth or a live, synchronous online supervised exercise group program. A face-to-face individual assessment with a CF physiotherapist takes place with a CF physiotherapist before and after all exercise programs. Each program aims to incorporate individual exercise preferences, and adults with CF are provided with a personalized exercise diary and an optional online peer support group to support their progress. The acceptability and safety of this model of care for adults with CF need to be tested in further research. Study conception and design: Megan Poulsen, Arwel W. Jones, Brenda Button, and Anne E. Holland. Data collection: Megan Poulsen, Anne E. Holland, Arwel W. Jones. Analysis and interpretation of Results: Megan Poulsen and Arwel W. Jones. Draft Manuscript preparation: Megan Poulsen, Arwel W. Jones, Brenda Button, and Anne E. Holland. All authors have reviewed the results and approved the final version of the manuscript. The authors would like to thank all of the study participants for taking part in this research study. Open access publishing facilitated by Monash University, as part of the Wiley - Monash University agreement via the Council of Australasian University Librarians. The authors received no specific funding for this work. This project received ethics approval from The Alfred Hospital Ethics Committee (Project identification number 620/21). Written informed consent was obtained from all participants prior to involvement. The authors declare no conflicts of interest. The authors have nothing to report. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.
Poulsen et al. (Sun,) studied this question.