Structured Physical Activity in Brain Cancer (PhAB)
Research type
Research Study
Full title
Barriers to and facilitators of physical activity for patients with glioma
IRAS ID
274453
Contact name
Ishrat Islam
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Summary of Research
Primary brain tumours affect more than 5000 people in the UK each year. High-grade glioma is the most commonly found brain cancer. This is a fast-growing type of brain tumour. Survival rate is low for this patient group.\nRegular exercise have physical, emotional and social benefits for patients with many types of cancer. It can improve the quality of life of patients even with advanced cancers. Glioma patients might benefit from being physically active in similar ways. These patients do, however, face many symptoms related to their brain tumour and its treatment. Finding ways to make exercising doable for this particular patient group is thus important. \nExercise in this context can be any kind of an activity that is done regularly to improve health. This does not necessarily mean gym-type exercises. Instead, it may relate to daily activities in a home setting. Examples are stretching legs, standing up and sitting down, or walking for a short distance. Glioma patients, however, might find exercising difficult due to their illness and treatment. \nSeveral studies have shown that exercise is possible and not harmful for this patient group. However, there is a not enough information on why the patients do not exercise, what may motivate them to exercise or what support they may need. \nThe purpose of this study is to find out what exercise glioma patients and their carers think is doable and appropriate for them. It also aims to find out what could motivate these patients to exercise and what might deter them from being active. \nThe study will conduct interviews with patients who are receiving treatment or care at the Velindre Cancer Centre. Their carers will be interviewed as well. \n
Summary of Results
Barriers to and facilitators of physical activity for patients with high-grade glioma (PhAB)
Who carried out the research? (including details of sponsor, funding and any competing interests)
This study was sponsored by Cardiff University and carried out by our research team at the Marie Curie Palliative Care Research Centre, Division of Population Medicine, School of Medicine. The project was funded by Tenovus Cancer Care (Tenovus iGrant TIG 2019-09). The neuro-oncology team at Velindre Cancer Centre in Cardiff, UK, supported us with recruiting patients. There were no competing interests.
What public involvement was there in the study?
Two research partners with experience of living with cancer (including brain metastases) provided feedback throughout all stages of the project. They reviewed all study materials, including the study protocol, participant information sheets and the interview guides, to make sure we used appropriate language and conducted the study in a way that was sensitive to patients’ and carers’ needs.
Where and when did the study take place?
We conducted this study between April 2019 and September 2021. We received ethical approval in May 2020. The Covid-19 pandemic, however, resulted in a temporary suspension of all non-Covid related research activities at the recruitment site. We were able to resume work on this project in December 2020, interviewing the first patient in March 2021 and concluding our interviews in July 2021. All interviewed patients (and their carers) were living in South Wales at the time of the interview and receiving care at Velindre Cancer Centre in Cardiff, UK.
Why was this research needed?
Evidence shows that people living with cancer can benefit from regular exercise. However, keeping active can be particularly challenging for people with brain cancer who may struggle with impaired movement and balance, loss of strength, seizures and fatigue. Patients with high-grade glioma – a common but very aggressive type of brain tumour – often face severe tumour symptoms and treatment side-effects with low survival rates and limited treatment options.
Promising recent findings suggest that keeping up physical activity may improve wellbeing and quality of life for people living with high-grade glioma and possibly delay deterioration. However, much more research is needed to better understand how exercise and physical activity could be used in a safe and effective way to help these patients.What were the main questions studied?
We looked at the everyday physical activity experiences of people living with high-grade glioma.
Our main study aims were to:
• Gain a better understanding of high-grade glioma patients’ experiences around physical activity and exercise since their diagnosis.
• Explore their thoughts on the idea of dedicated physical activity programmes for people living with high-grade glioma.Our specific research questions were as follows:
• What kinds of physical activities do patients prefer and manage to keep up in everyday life?
• What makes being active difficult?
• What motivates and demotivates them?
• What do their carers think about being physically active with high-grade glioma?
• Would they generally be interested in participating in physical activity programmes?
• What kinds of activities would they prefer?What happened during the study?
• We carried out semi-structured telephone interviews with people diagnosed with high-grade glioma and their carers. We usually interviewed patients and carers separately and spoke to carers only if patients had agreed for us to do so.
• We audio-recorded all interviews, fully transcribed them and removed all identifiable information. We then analysed the anonymised interview transcripts thematically to identify common topics (“themes”) that participants brought up. This explored what they felt helped/motivated them to be active (facilitators), what made being active difficult (barriers) and what kinds of activities they generally were able to do and preferred to keep up (activity preferences).
• We also asked patients to complete a short physical activity questionnaire (IPAQ) over the phone before the interview to find out how active patients had recently been.What were the results of the study?
Sample description
• We interviewed ten patients and eight carers.
• Most patients were male (eight male, two female) and ranged in age from 33 to 79 years (median age: 65 years).
• The majority were retired (due to ill health or age).
• Two (younger) patients had managed to return to work.
• Five of the patients were undergoing chemotherapy at the time of the interview while the other five had finished treatment and were being monitored.
• Time since diagnosis ranged from two months to four years.
• The carers we spoke to were usually spouses, ranging in age from 49 to 80 years.Activity preferences and recent activity levels
• The completed physical activity questionnaire suggested that patients’ recent physical activity levels were mostly ‘low’ or ‘moderate’.
• Common physical activities involved doing housework, gardening and going for walks, with fewer patients doing more dedicated fitness activities (e.g. strength training) on a regular basis.Key facilitators to being active
• Perceived benefits as motivators – Health promotion and regaining a sense of control and normality: Most patients (and their carers) appreciated the general benefits of physical activity (e.g. promoting fitness and strength, supporting mental wellbeing and providing an opportunity to socialise). Some patients described how remaining physically active helped them maintain a sense of normality and take back control after their diagnosis.
• Social support: ‘Family support’ from carers who encouraged and provided company for activities as well as ‘Professional support’ from healthcare or exercise professionals who reassured or guided them.
• (Physical) capability and opportunity: Being physically able to be active, having time and access to activities/facilities/equipment (e.g. attractive walking areas, e-bike)Key barriers to being active
• Pandemic restrictions: All participants discussed the negative impact the restrictions related to the Covid-19 pandemic (e.g. shielding, travel bans, closed gyms/suspended group activities) had had on their fitness levels and the kinds of activities they had been able to keep up in recent months.
• Loss of physical ability and opportunity to be active: Physical impairments usually related to patients’ tumour condition and treatment side effects (e.g. fatigue and weakness) but also to comorbidities such as arthritis. Legally no longer being able to drive (due to risk of seizures) was frequently mentioned as a barrier to accessing places and activities independently.
• Psychological barriers: These included safety concerns, low mood and anxiety/worry as well as motivational barriers, e.g. the demotivating effects of their tumour diagnosis (e.g. loss of control and confidence) but also more general struggles with finding the motivation to be active (e.g. not seeing oneself as an exercise person or having gotten used to a less active lifestyle, e.g. after taking it easy during treatment/after retirement; not seeing any benefits to being more active).
• Lack of guidance and encouragement from healthcare professionals. The topic of remaining physically active did not appear to be commonly discussed in more depth with their healthcare team.Targeted physical activity programmes for brain tumour patients
Most patients were open to the idea of dedicated physical activity programmes specifically for brain tumour patients:
• Heterogeneity of needs and activity preferences: Patients varied widely in their activity preferences, depending on their past exercise experience, their current health, and their interests, ranging from “not being sure what best to include” to gym-type strength exercises, swimming, dancing, cycling, to walking and Tai Chi.
• Participation motivators: Patients were motivated by the possibility of improving e.g. their strength, mobility and mental wellbeing. However, for some, the opportunity to socialise and be active with others seemed to be the biggest motivator for considering taking part in a structured programme. Preferences with regards to group activities varied. Some saw benefit in joining other brain tumour patients due to their shared experience. Some preferred to be active with healthy others to be able to maintain a sense of normality.How has this study helped patients and researchers?
• This study has provided more insights into the barriers and challenges to remaining active for people living with high-grade glioma.
• Many of the participating patients were relatively ‘stable’ and well at the time of the interview. This enabled us to gain a better understanding of the various preferences and motivations of this particular patient group, at a time in their disease journey when establishing physical activity habits may still be easier for patients.
• Barriers to being physically active included restrictions related to the Covid-19 pandemic which had been interrupting all aspects of daily life for over a year at the time of our interviews. This limited our ability to gather a clear picture of the kinds of activities patients managed to keep up after their diagnosis.
• Importantly, our study provided people living with high-grade glioma access to research, along with the opportunity to share their thoughts and experiences on physical activity and exercise.
• Recruiting high-grade glioma patients with more physical difficulties than those who volunteered to participate in our interviews proved difficult. This demonstrates the challenges around including this diverse patient group in research and highlights the difficulties these patients face and their unique needs.Details of any further research planned
We are hoping to carry out further research to learn more about how physical activity and exercise could be used to improve the quality of life and wellbeing of brain tumour patients. We would like to:
• Design a survey, informed by the findings from our present study, to find out about the motivations, barriers, preferences, and support needs of high-grade glioma patients (and their carers) in a larger sample of patients.
• Design a personalised physical activity intervention study to evaluate the effectiveness of a dedicated structured physical activity programme on the quality of life of high-grade glioma patients.Where can I learn more about this study?
More details on the study can be found here: https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbZ3MyGjvi5pwScszTp7mye-2FAv0uBeL3N2-2BC5z2-2FpQYgFj4dspV3kJ6fadgPuyP-2F5P2dFpUKQgpFThWkLnllZW14qymkHKFrKRzzeG-2BhpO3LmqEHXSZ4qIcZ4i5Z3Tf3GFw-3D-3D2znS_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YJMI0cxoBPWCAKoa4uRkMS26j8eZrDrDlSKOmPNBPgaQjWiOWrM0k239u4O-2BLCkv9ImSOMqA4yQXqgIUkqCtmreaqJEieNGNSyaJn6-2FeKQ9kMpu9CGLIzQSTzb5bhW-2FP1CxX8VEA903KA2BUcGyu8AJK5nbl7DAwj5A9Asph5cgjkjQx33AffRI8P0rr6XUI2A-3D&data=05%7C01%7Capprovals%40hra.nhs.uk%7C407a4e687c42415712bb08dad27bafdb%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638053725917543113%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=nfU7fF9SponC%2BDLA%2FhjZFAshvEJ%2BSa2yBYvgoK2SNFQ%3D&reserved=0
Acknowledgments
We would like to thank Tenovus Cancer Care for funding this project and the neuro-oncology team at the Velindre Cancer Centre in Cardiff, UK, for their help with recruiting patients to this study. We are deeply grateful to the patients and carers who agreed to participate and share their experiences around remaining physically active after their brain tumour diagnosis.
REC name
Wales REC 3
REC reference
20/WA/0078
Date of REC Opinion
15 May 2020
REC opinion
Further Information Favourable Opinion