Impact of COVID-19 on an established physical activity and behaviour change support programme for cancer survivors: An exploratory survey of the Macmillan Move More service for Northern Ireland

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is the viral strain responsible for the novel coronavirus disease 2019 (COVID-19) pandemic. Since its emergence in December 2019, the viral outbreak has subsequently evolved into a global public health emergency. COVID-19 is associated with lethal respiratory infections in humans and affects people of all ages; however, older adults and those with comorbid medical conditions are at greater risk [1]. The virus is primarily spread through direct (person-to-person) or indirect (surfaces) contact transmission via respiratory secretions [2]. As of 21^st February 2021, there are 4.1 million confirmed cases in the UK (110,979 in Northern Ireland) with ~ 120,000 deaths [3]. The UK government responded to the surge in cases by implementing widespread transmission prevention measures. Without an effective vaccination programme, physical distancing alongside good personal hygiene (hand hygiene, face coverings etc) appear to be the most effective measures to control transmission [4, 5]. The UK entered a national lockdown in March 2020 and in recent months restrictions have been relaxed and reimposed. However, mitigation measures have severely impacted the provision of clinical services including routine cancer care and supportive services [6]. In fact, the extent of the pandemic has created a backlog of undiagnosed cases, that even additional resources will take significant time to rectify [7].

Each year, over 360,000 (>9,400 in Northern Ireland) new cancer diagnoses are reported in the UK, with numbers estimated to increase by 2% by 2035 [8]. With increasing numbers of cancer survivors, effective supportive care interventions are required. Accumulating evidence recognises regular exercise as an effective supportive care intervention which can induce many physiological and psychosocial benefits. These include improved tolerance to cancer treatment-related toxicities, improved disease outcomes and better quality of life throughout survivorship [9]. Exercise training has been shown to improve cardiorespiratory fitness, muscular strength, body composition, fatigue and overall quality of life in individuals with cancer, with supervised exercise preferred to self-directed exercise [9, 10]. However, the restrictions imposed in response to the COVID-19 pandemic prevents the delivery of face-to-face exercise sessions. In response, exercise providers have been forced to innovate using digital technology to provide access [6], whilst service users have embraced these innovations to remain active.

Macmillan Move More NI (MMNI) is a physical activity referral programme in partnership with Macmillan Cancer Support and the eleven district councils across Northern Ireland, each containing a MMNI coordinator. As qualified exercise specialists, coordinators are responsible for implementing the Macmillan Physical Activity Behaviour Change Care Pathway. The overarching aim of the programme is to ‘ensure that everyone living with cancer in Northern Ireland is aware of the benefits of physical activity and is enabled to choose to become and stay active, at a level that is right for them’. This is achieved by providing a personalised plan of supervised physical activity and exercise, information and support to empower behavioural change. The programme aims to help people become and remain active, improve their general fitness, assist in managing cancer treatment, and improve their quality of life, ultimately enjoying the many renowned benefits of exercise [9]. Traditionally this service is delivered face-to-face at local leisure centres throughout NI, by specialist coordinators that tailor exercise prescription. As a result of COVID-19 restrictions, the MMNI service has adapted (remotely using digital technologies e.g. Zoom, YouTube etc) to enable continued delivery. Whilst these changes have been imposed by the COVID-19 pandemic, it underscores the need for scalable remote interventions in the longer term [11]. Innovative technological solutions are cost-effective and have the potential to broaden accessibility. Providing a dual service of face-to-face classes (once restrictions are lifted) and remote access, may help improve overall service delivery.

However, the impact of COVID-19 on the MMNI programme and the effects of modified service delivery on its users is unknown. Consequently, a service evaluation was conducted, detailing the impact of the COVID-19 restrictions on participants. As COVID-19 restrictions are currently implemented globally, the results of this survey may help guide service innovation for similar community-based programmes. As detailed above, learning from the transition to remote service delivery and participant experiences, during a global pandemic or similar public health crisis, could be useful in designing and delivering a person-centred service (using mixed delivery methods) to improve access for all.

The aim of this service evaluation was to detail the impact of COVID-19 restrictions on people living with cancer, who engage in the MMNI programme and to evaluate perceptions on alternative approaches to service delivery. The societal restrictions imposed in response to the COVID-19 pandemic have limited the ability of exercise providers to deliver supervised, face-to-face exercise. This may have significant effects on wellbeing, since frequent exercise is recommended to help people living with cancer maintain both physical and psychosocial wellbeing [9]. The current study demonstrates the impact of COVID-19 restrictions on the physical and psychosocial wellbeing of MMNI service users, which has been further compounded by the restrictions imposed on MMNI capabilities to deliver face-to-face exercise classes. To continue MMNI services and promote exercise during restrictions, the Move More coordinators responded with service adaptations involving ‘live’ exercise sessions, facilitated through digital technology (e.g. Zoom), and the development of recorded exercise sessions uploaded to YouTube. This response was welcomed with a positive, large-scale adoption of digital technology for exercise provision, and further interest in digital based solutions.

Although interest and engagement in home-based exercise surged briefly when restrictions were originally implemented [14], disruptions to cancer exercise services such as MMNI removed an important supervised and supportive environment for cancer survivors to participate in group exercise. Consequently, cancer patients risk regressing to a sedentary lifestyle which may have a negative impact on their physical and psychosocial wellbeing [15]. Results from this evaluation confirmed the impact of reduced face-to-face MMNI services and subsequent reductions in exercise frequency. In agreement, a recent international, online survey of 1047 participants, reported a decrease in physical activity intensity levels and subsequent increase in daily sitting time, as a consequence of COVID-19 restrictions [16]. Similarly, a recent community-based physical activity programme for 61 cancer survivors reported reduced physical activity (67%) since the start of the pandemic, alongside impacts to mental health [17]. Interestingly, some respondents (i.e. the most active) managed to maintain high levels of activity, during COVID-19 restrictions, perhaps related to their levels of intrinsic motivation, self-confidence and psychosocial support, all of which are important components of exercise adherence [18].

Nonetheless, most respondents reported both physical and psychosocial impacts of restrictions including loneliness, loss of social support, loss of motivation, deterioration in fitness/health, and negative changes in body composition. This is a consistent finding, as a recent online survey of 1491 adults (inclusive of participants with chronic illness) reported decreased physical activity (48.9%) since the start of the pandemic and greater levels psychological distress (e.g. anxiety and depression) [19]. Even though breast cancer was heavily represented in the present survey, possibly a result of a finely tuned referral pathway to the service or the strength of the evidence base for exercise in breast cancer survival - lending to greater engagement, these themes were typical across gender and all cancer diagnoses. However, with the enforced loss of such essential community cancer exercise services during restrictions and the physical and psychosocial impact on wellbeing, this highlights the need for the rapid development of alternative interventions which can safely, and reliably deliver tailored exercise in participants homes whilst providing a social network of support [15]. While the COVID-19 pandemic appears to have impacted our sample population, we note that this may not be the case in wider sections of society. A recent lifestyle survey of 3533 respondents, investigated the immediate impact of the pandemic and recorded a slight increase in self-reported physical activity [20]. However, notable methodological differences exist within the sampling groups particularly age, health status, geography and potential subjective bias in self-reporting lifestyle behaviours.

Data from pre-COVID-19 studies in prostate cancer suggests that switching from supervised to home-based exercise may not confer any additional benefits to physical and psychosocial outcomes including fatigue, quality of life, and body composition [21‐23]. Detrimental changes in body fat may also occur during a COVID-19 imposed lockdown [24] and may negatively impact metabolic health, and disease prognosis, highlighting the necessity for continued exercise support. Optimising an exercise stimulus and facilitating the intervention through digital technology, may help increase contact with participants and maintain motivation and adherence [15, 25]. The new age of COVID-19 restrictions means cancer exercise services will be required to adapt quickly to the changing environment. MMNI responded to the COVID-19 challenge with innovative service provision. This included a bank of pre-recorded exercise sessions uploaded to YouTube. Sessions created and uploaded to internet servers offer convenient access to unsupervised exercise for those with regular exercise habits, but may be unlikely to promote adherence in people affected by cancer [15]. Facilitating exercise with digital technology and offering supervised group-based exercise ‘live’ via digital platforms (e.g. Zoom), can introduce remote supervision, camaraderie and peer support, maximising adherence and effectiveness [26]. The success of these service changes is reflected in their widescale adoption. The results from this survey highlight a positive adoption of new exercise behaviours, with most participants accessing technology facilitated exercise, through Zoom. This is likely influenced by the ubiquity of digital / mobile technology for health, and its convenience and flexibility [27]. We anticipate that an integrated, purpose-built app incorporating the full repertoire of MMNI services (e.g. virtual / ‘live’ supervised exercise; uploaded exercise videos; behavioural support etc), provides a singular location to support participants, enhancing continuity in service delivery and engagement. Telehealth is thus emerging as a viable option for exercise delivery, during the pandemic [28, 29] and in the recent past has proved successful in improving physical and cognitive functioning, pain, strength, fatigue and global health status in cancer populations [30].

Although largely positive data supported the response of MMNI during restrictions, some concerns were raised regarding a lack of technological support. The need for more technological support is unsurprising given that most cancer survivors are over 65 years old [31], and despite the growing ubiquity of mobile technology in this age group, many may not have the technological proficiency to effectively use the technology to support exercise [32]. Supplementary technology-specific support (e.g. access and navigating digital platforms) is required to enable participants to fully utilise novel technologies, to facilitate their remote exercise programming. Indeed, the current data highlights an eagerness within the sample to adopt new technologies with the majority (n=300) keenly backing the development of a MMNI mobile app. This overwhelmingly positive response may have stemmed from their experiences of using digital technologies to support their exercise regime during restrictions (62%) or indeed the continued need to avail of support in general, using the medium of technology as an outlet. Similarly, a parallel survey conducted during the pandemic, explored alternative strategies for the delivery of exercise and social support, with participants expressing a preference to using digital technology for exercise programming and social support [17]. Since a lack of instruction and guidance is a common barrier in older adults [33], appropriate education and support is necessary. In addition, the involvement of all stakeholders in a user-centred design approach would likely optimise the App. Such an approach would ensure the App is evidence-based, theoretically informed and practical, including all the information and features to enable early uptake and implementation [34]. Given people with cancer may live with numerous side effects of treatment (e.g. fatigue; neuropathy; immunosuppression etc), inhibiting their commute to classes, as well as the present restrictions imposed, investment in a smart application may prove advantageous to ensure remote accessibility and engagement. The current circumstances (i.e. COVID-19 restrictions) have forced users to become innovative and embrace technology, so this may prove an optimal time to develop app-based delivery, whilst participants are receptive to change. For as long as restrictions persist, it could provide a pragmatic, cost-effective alternative for exercise delivery.

This service evaluation is not without limitations. The inclusion of free text questions within the survey aims to provide a deeper understanding of the participant experiences, however these should be interpreted with caution. Free text responses were often limited to one or two sentences which may reduce the potential to understand the context of the participant experience. In addition, a small number of participants did not provide free text responses, perhaps indicative of participant burden or indeed an uneasiness documenting negative experiences. We are reasonably confident the latter was not the case, given the reporting of both positive and negative experiences. A further and important limitation is the representation of the sample. Females with a diagnosis of breast cancer comprise half the respondents, with males underrepresented (18%). This suggests, that while common themes were reported for both genders, the results are more representative of female experiences. Equally, we cannot be sure that participants submitted a single response to the survey, without collecting enhanced identifiable information (e.g. name; date of birth; IP addresses). However, we mitigated the possibility of duplicate responses by providing strict instruction during the consenting process (to complete once) as well as a submission message at the end, so participants were in no doubt that their response was registered. Lastly, the self-reported nature of physical activity levels, might also present a limitation (e.g. reporting bias). Despite these limitations, this study demonstrates the impact of COVID-19 restrictions on MMNI participants, and the response of this service to national adversity.

Findings confirmed reduced exercise participation amongst MMNI participants when face-to-face sessions ceased, in response to restrictions imposed. Although, the adoption of digital technology to help access exercise remotely was reported, participants described the negative impact of the restrictions on their physical and psychosocial wellbeing. Alternative methods of delivery introduced by MMNI to continue service provision were positively welcomed, creating further interest in developing tailored digital solutions to deliver targeted exercise. Such technology used alongside face-to-face sessions (when restrictions permit) has the potential to reach a larger population, including those who report competing interests and programme location as barriers [35] and would bring added benefit to those already enrolled. Below, we outline recommendations for future practice in the changing COVID-19 environment, based on the findings.

Adopting mixed methods of exercise delivery is becoming essential when seeking to maximise the reach and engagement of people living with cancer, thus supporting exercise and behavioural change. Given the rapid response and subsequent versatility of the MMNI programme, it could be considered an example of best practice or model to follow for similar cancer support services.