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- 24 - Sport and Exercise Sciences, Leisure and Tourism
- Submitting institution
- The University of Leeds
- Unit of assessment
- 24 - Sport and Exercise Sciences, Leisure and Tourism
- Summary impact type
- Health
- Is this case study continued from a case study submitted in 2014?
- No
1. Summary of the impact
Functional recovery following paralysing severe spinal cord injuries (SCI) has eluded science and medicine for centuries. Research by Ichiyama and colleagues has underpinned trials in the USA in humans with severe SCI extending the impact reported in REF2014 (one individual) to several people and, importantly, to further functional recovery (actual walking). Specifically, Ichiyama and collaborators used a combination of epidural electrical stimulation of the spinal cord, pharmacological agents and rehabilitation training to enable animals with severe SCI to walk and this provided the essential foundation for translation to humans with severe SCI. These new results are unprecedented as this intervention is the first in medical history to restore walking ability to people with a paralysing complete SCI. In addition, the combination treatment has enabled these people to regain other bodily functions, including bowel and bladder function. This clinical impact has also generated further increased donations for charities and spurred commercial investments in this technology.
2. Underpinning research
The intervention pioneered by Ichiyama gains access to spinal circuits controlling locomotion and restores motor function to animals with a complete spinal cord injury (SCI). Following his appointment at the University of Leeds in 2007, Ichiyama led the development of a detailed rehabilitative strategy in animals (R1, R2), which involved the combination of three elements - epidural stimulation of the spinal cord, daily rehabilitation (locomotor training) and the administration of quipazine (a serotonin agonist). This work (R1, R2) was performed in collaboration with researchers at UCLA. This research, which was based on previous proof-of-principle experiments, addressed critical issues including whether epidural stimulation was safe, what the effects of different stimulation regimes were on the animals, and the specific combination of stimulation, drugs and rehabilitation training that delivered optimal results.
Ichiyama and collaborators reported (R1, R2) that the intervention allowed animals with a severed spine to take weight-supported steps. They found that epidural stimulation (50Hz) of lumbar segment L2 resulted in weight-supported coordinated plantar stepping in rats receiving a complete spinal transection at thoracic level T9-10; that intraperitoneal administration of serotonin agonist (quipazine) improved functional recovery (R1, R2); and that epidural stimulation combined with serotonin agonists significantly improved weight-bearing stepping (R1, R2). The research also demonstrated that walking ability improved markedly when stimulation was combined with a locomotor training regime (R1). Daily training using these three interventions resulted in stable and consistent stepping patterns, with increased and coordinated muscle activity. Rats with a complete spinal cord transection trained to step under epidural stimulation and serotonergic agonists developed a movement pattern with a narrower base of support better adapted to cope with the lack of postural control (R1). The experiments also demonstrated that applying epidural electrical stimulation daily to the lumbar segments was a safe procedure that could also have further benefits not directly investigated in those studies. For example, a much more efficient recovery of bladder reflexes in treated as compared to non-treated rats was observed.
3. References to the research
Web of Science citations as of 13/01/2021. Scopus citations as of 13/01/2021
Ichiyama, RM, Courtine, G, Gerasimenko, YP. Yang, GJ, van den Brand, R, Lavrov, IA, Zhong, H, Roy, RR, Edgerton, VR. (2008) Step training reinforces specific spinal locomotor circuitry in adult spinal rats. The Journal of Neuroscience 28:7370-7375 DOI:10.1523/JNEUROSCI.1881-1808.2008 [WoS citations: 117] [Scopus citations: 123]
Ichiyama, RM, Gerasimenko, Y, Jindrich, DL, Zhong, H, Roy, RR, Edgerton, VR. (2008) Dose dependence of the 5-HT agonist quipazine in facilitating spinal stepping in the rat with epidural stimulation. Neuroscience letters 438:281-285 DOI: 10.1016/j.neulet.2008.04.080 [WoS citations: 41] [Scopus citations: 43]
Selected grants awarded to Ichiyama to evidence quality of research:
2018 – 2020 International Spinal Research Trust; Ichiyama (PI). Development of Epidural Electrical Simulation for Bladder Control: Animal Model - GBP193,374
2013 – 2016 Medical Research Council; Ichiyama (PI) - GBP346,736.83. Enhancing functional recovery after spinal cord injuries with combinatorial treatments
2012 – 2015 International Spinal Research Trust; Ichiyama (PI) - GBP91,101 (Natalie Rose Barr Ph.D. studentship). Maximizing activity-dependent plasticity for recovery of function after spinal cord injury
2011 – 2013 Internationale Stiftung für Forschung in Paraglegie; Ichiyama (PI) - CHF150,000. Can the combination of anti-Nogo-A antibody and locomotor training result in beneficial effects on functional recovery?
2011 - 2012 Royal Society; Ichiyama (PI) GBP15,000 (equipment grant). Understanding rehabilitation mechanisms to improve functional recovery after spinal cord injuries
2009 – 2011 International Spinal Research Trust; Ichiyama (PI) - GBP97,174. Locomotor Training in Chronic Adult Spinal Cord Injured Rats: Plasticity of Interneurons and Motoneurons
4. Details of the impact
In REF2014 we reported translation of Ichiyama’s work to one person, who recovered ability to stand independently. Here (REF2021) we report substantial new impact: for the very first time in medical history, recovery of walking in people with a paralysing SCI was accomplished by using (implanted) epidural stimulation by two independent groups [A]. Another group also using epidural stimulation recently showed recovery of walking in incomplete injury [B]. No other forms of treatment have ever shown such level of recovery of walking in chronic completely paralysed people. This substantially furthers the impact reported in REF2014 where Ichiyama’s work was translated to one person with severe SCI who recovered independent standing and the ability to voluntarily move the legs when laying down or sitting.
As reported in REF2014, Ichiyama’s work provided the foundation for the development of the epidural electrical stimulation interventions that have been demonstrated to restore voluntary movement control in people paralyzed by SCI. Specifically, a detailed rehabilitative strategy developed at Leeds from 2007 (i) established the effectiveness and safety in animals of a particular regime of epidural stimulation, locomotor training and drugs and (ii) provided the necessary foundation and model for translation to humans. Professor V. R. Edgerton (UCLA) then took the leading role in translation of the work to humans and achieved the first recovery of standing and voluntary control of movement in a paralysed person using a rehabilitation strategy based on the Leeds’ rehabilitation regime (Harkema et al., (2011) Lancet 377:1938-47). That article directly acknowledged the causal relationship between the animal studies ( R1) and the later human work in its opening paragraph: “Adult spinally transected rats can step only with a combination of interventions of locomotor training, pharmacological intervention, and epidural stimulation ( Ichiyama et al 2008 [ie R1]). This evidence led to the hypothesis that if similar spinal circuits exist in human beings, then electrically stimulating the lumbosacral spinal cord epidurally coupled with intense training could facilitate…”
The new impact reported for REF2021 (Fig.1), substantially extends the number of people who have been treated with this combination approach, and includes people with both complete and partial paralysis. Crucially, it has been shown that this approach furthers both the extent of functional recovery (paralyzed people are now walking and showing other improved bodily functions) and the number of different groups/universities worldwide now successfully using this intervention. The widely publicised success in the first paralysed person to receive this treatment (original REF2014 impact) has now been applied to at least 29 more people living with SCI with unprecedented further positive outcomes (i.e. restoration of walking), in research centres in the USA (Louisville, Rochester) [ A] and Europe (Lausanne) [ B].
In a significant step from the original 2011 Lancet paper, in 2018, Angeli et al reported that 4 people with SCI had been treated with the combination of locomotor training and epidural stimulation derived from R1 and R2 [A1]. Two of these participants, who had motor complete injury and were completely paralysed from a cervical or high thoracic SCI, were able to recover independent overground walking (with only a frame for stability). The other two participants, also with motor complete types of SCI were also treated and showed recovery of independent standing and some treadmill stepping components (e.g., stepping with one leg). Independently, another group (Gill et al 2018) also reported recovery of independent walking ability in a completely paralysed person with epidural stimulation and locomotor training [A2]. Prior to this no other intervention had ever been able to successfully restore walking ability in people with complete paralysis after a severe SCI.
REF2021
REF2014
LEEDS
Underpinning research
Ichiyama et al (2008)
Completely transected rats
Harkema et al (2011) – Univ. of Louisville, KY, USA
First human SCI motor complete – n=1
Recovered Standing, voluntary movement of lower limb muscles
Angeli et al (2018) – Univ. of Louisville, KY, USA
Human - motor complete
Recovered Overground Walking
Gill et al 2018 – Mayo Clinic, Rochester, MN, USA
Human - motor complete
Recovered Overground Walking
Wagner et al 2018 – EPFL, Lausanne, Switzerland.
Human - motor incomplete
Improved Overground Walking
Figure 1. Impact map. The impact reported in REF2014 covered translation of Ichiyama’s work to a Case Study reported in the Lancet with recovery of standing. This impact has extended substantially (REF2021) in both breadth and reach, with multiple centres now reporting recovery of actual walking.
Impact on people with SCI
The significance of the human intervention for people with severe SCI is profound. As reported in REF2014, the first person to benefit from the intervention, was a 25-year-old man who had been paralysed below the waist. The benefits to this individual have been long term: “ More than a decade on, he continues to strengthen and expand upon his recoveries” [I]
Further to this original demonstration, other publications have repeated and extended those results [C] beyond the impact demonstrated in REF2014. Now, three independent laboratories (University of Louisville, USA; Mayo Clinic Rochester, USA and University of Lausanne, Switzerland) have independently reported recovery of walking ability in people with chronic complete and incomplete spinal cord injuries [A, B]. The participant who has regained the most function can walk independently (2018) using a walker. She has stated: “it makes me feel normal again. It makes me feel like I can be an active member of society. ” [D]
There is significant activity in the new field with several initiatives extending the reach (more participants) and breadth (investigating effects on other bodily functions). For example, the effects of epidural stimulation on bowel and bladder, sexual and cardiovascular functions have also been reported in USA, Canadian and European clinical settings [E]. In these studies, a total of 29 people living with SCI are reported as being treated, all showed significant improvement and control of the specified function that was the focus of the studies, including cardiovascular, bowel, urinary, sexual and volitional control functions. In some individuals, improvements were found in more than one of these functions following the treatment. In one study, two participants both showed improvements after the treatment – which took place 5 and 10 years after the original injuries. The importance of these results to the individual participants is immense; in addition this approach to treating SCIs is of high value to healthcare practitioners, providing a new and improved way to treat people living with SCI.
The health and welfare impacts of Ichiyama’s research have been of enormous significance to the people treated, and the reach of the research’s impact is already developing beyond the immediate clinical setting, as demonstrated by the commercial and public/charitable impacts below.
Commercial Impact:
The commercial medical device sector is investing in technology to support the intervention including established companies in the field and newly created ones. Medtronic devices were used in the currently published reports but those devices were off-the-shelf implants specifically designed to treat chronic pain. Significantly, new companies such as Onward (originally GTX Medical (Netherlands) and NeuroRecovery Technologies (USA), prior to acquisition by Onward during 2020) have entered the market to produce new fit-for-purpose implantable electrode arrays [F]. From 2014, at least 32 patents specifically covering epidural stimulation electrodes and technology have been filed by different groups, including GTX Medical, Medtronics and various clinical centres and institutes [G].
Impact on the public and charitable organisations:
The breakthroughs based on Ichiyama’s work have been widely reported in the academic, medical and mass media and have stimulated interest in the new field [D, H]. Charities focussed on SCI have reported that the successful outcomes have “further fueled ES research in laboratories and clinics around the globe” and “Donors, active and potential, are excited by the prospect of a therapy” [I]. This interest has directly affected the number of research grants funding investigations on epidural stimulation for recovery of function [J].
5. Sources to corroborate the impact
A] First reports of recovery of stepping ability after severe SCI (motor complete):
Angeli, CA, et al. (2018) Recovery of Over-Ground Walking after Chronic Motor Complete Spinal Cord Injury. New England Journal Medicine 379:1244-1250. DOI: 10.1056/NEJMoa1803588
Gill, ML, et al. (2018) Neuromodulation of lumbosacral spinal networks enables independent stepping after complete paraplegia. Nature Medicine (2018) Letter | Published: 24 September 2018. DOI: 10.1038/s41591-018-0175-7
[B] Report of recovery after partial SCI:
Wagner FB, et al., (2018). Targeted neurotechnology restores walking in humans with spinal cord injury. Nature. 563(7729):65-71. doi: 10.1038/s41586-018-0649-2.
[C] Studies extending and replicating the original effects (standing, voluntary control of lower limb muscles) reported in Harkema et al (2011):
Grahn PJ, et al. (2017) Enabling Task-Specific Volitional Motor Functions via Spinal Cord Neuromodulation in a Human With Paraplegia. Mayo Clin Proc. **92(4):**544-554. doi: 10.1016/j.mayocp.2017.02.014.
Rejc E, et al. (2017) Effects of Stand and Step Training with Epidural Stimulation on Motor Function for Standing in Chronic Complete Paraplegics.. J Neurotrauma. **34(9):**1787-1802. doi: 10.1089/neu.2016.4516.
Rejc E, Angeli C, Harkema S. (2015) Effects of Lumbosacral Spinal Cord Epidural Stimulation for Standing after Chronic Complete Paralysis in Humans. PLoS One 10(7):e0133998. doi: 10.1371/journal.pone.0133998. eCollection 2015.
Sayenko DG, et al. (2014) Neuromodulation of evoked muscle potentials induced by epidural spinal-cord stimulation in paralyzed individuals. J Neurophysiol. **111(5):**1088-99. doi: 10.1152/jn.00489.2013.
Angeli CA, et al. (2014) Altering spinal cord excitability enables voluntary movements after chronic complete paralysis in humans. Brain. 2014 **137(5):**1394-409. doi: 10.1093/brain/awu038.
[D]: Examples of television coverage: Journalist CBS New York (2018), “Spinal Cord Study Offers New Hope for Paraglegics” : https://www.youtube.com/watch?v=izFEOkmWDrM . BBC News (2018) “Paralysed men walk again with spinal implants https://www.youtube.com/watch?v=iFJv78yGtNM.
[E] Publications on the use of epidural electrical stimulation for recovery of bladder, bowel, blood pressure and other autonomic functions after SCI were first reported in 2016/2017 (clinical data). Here are a few examples of such publications:
Harkema SJ, et al., (2018). Epidural Spinal Cord Stimulation Training and Sustained Recovery of Cardiovascular Function in Individuals With Chronic Cervical Spinal Cord Injury. JAMA Neurol. 1;75(12):1569-1571. doi: 10.1001/jamaneurol.2018.2617.
Walter M, et al. (2018). Epidural Spinal Cord Stimulation Acutely Modulates Lower Urinary Tract and Bowel Function Following Spinal Cord Injury: A Case Report. Front Physiol. **9:**1816. doi: 10.3389/fphys.2018.01816. eCollection 20
Herrity AN, et al., (2018). Lumbosacral spinal cord epidural stimulation improves voiding function after human spinal cord injury. Sci Rep. 8(1):8688. doi: 10.1038/s41598-018-26602-2.
Darrow D, et al., (2019). Epidural Spinal Cord Stimulation Facilitates Immediate Restoration of Dormant Motor and Autonomic Supraspinal Pathways after Chronic Neurologically Complete Spinal Cord Injury. J Neurotrauma. **36(15):**2325-2336. doi: 10.1089/neu.2018.6006.
Legg Ditterline BE, et al., (2020) Restoration of autonomic cardiovascular regulation in spinal cord injury with epidural stimulation: a case series. S.Clin Auton Res. 2020 May 13. doi: 10.1007/s10286-020-00693-2.
[F]: Onward https://www.onwd.com/ (originally GTX Medical (Netherlands) and NeuroRecovery Technologies (USA) prior to acquisition by Onward during 2020)
[G]: Selected examples of patents:
Edgerton et al., University of California & Neurorecovery Technologies (2016) Epidural stimulation for facilitation of locomotion, posture, voluntary movement, and recovery of autonomic, sexual, vasomotor, and cognitive function after neurological injury. US 2016/0175586 A1
Bradley et al. Boston Scientific Neuromodulation Corporation Valencia, CA (2014) Method for epidural stimulation of neural structures. US 8,923,988 B2
Harris & Klein, Medtronic, Minneapolis MN (2017) Percutaneous flat lead introducer. US 2017 / 0354804 A1
Howard et al. Direct Spinal Therapeutics Inc University of Iowa Research Foundation (2019) Transdural electrode device for stimulation of the spinal cord. WO 2019/232544 A1
Courtine et al. Ecole Polytechnique Federale de Lausanne, Lausanne (2019) System to deliver adaptive epidural and/or subdural electrical spinal cord stimulation to facilitate and restore locomotion after a neuromotor impairment. US 10,265,525 B2
[H]: Example of newspaper coverage: Journalist: NBC News (24/09/18) Paralyzed patients walk again with help from pain stimulator. https://www.nbcnews.com/health/health-news/paralyzed-patients-are-walking-again-help-pain-stimulator-n912541.
Nature (31/07/19): “How a revolutionary technique got people with spinal cord injuries back on their feet.” https://www.nature.com/articles/d41586-019-02306-z.
[I]: Letter (dated September 2019) from Christopher and Dana Reeve Foundation – increased interest, increased donations
[J]: Spreadsheet compiling grant information: In the USA, prior to 2013 the NIH had funded 1 grant (~US$ 1.5mi) focused on epidural electrical stimulation for functional recovery after SCI. From 2013, there were 11 grants totalling over US$11mi (not all values were reported, source: National Institutes of Health). Similarly, in the UK and Europe, Research Councils and Charities had funded 4 grants (£1.1mi) before 2013, with a total of 12 (at least £3.7mi; not all values reported) from 2013 (source: ERC, Wings for Life, ISRT, MRC).
- Submitting institution
- The University of Leeds
- Unit of assessment
- 24 - Sport and Exercise Sciences, Leisure and Tourism
- Summary impact type
- Health
- Is this case study continued from a case study submitted in 2014?
- No
1. Summary of the impact
Burke’s research has led to the development and testing of an innovative ‘Move to Improve’ toolkit to promote and embed physical activity (PA) in rehabilitative palliative cancer care, which has: (a) improved patients’ functional mobility and understanding of PA; (b) increased healthcare providers’ knowledge and delivery of PA in routine care and (c); guided organizational PA strategies/policies and staff training. ‘Move to Improve’ has been tested in clinical practice and adopted by 7 Sue Ryder hospices (UK) and Dr. Sardjito General Hospital (Indonesia). These establishments employ approximately 1000 staff who provide support to over 110,000 patients with advanced cancer yearly.
2. Underpinning research
Burke’s research identified quality of life benefits spanning physical, psychosocial, and spiritual domains of well-being [2-5] as well as key factors affecting participation in physical activity (PA) at multiple levels of influence [1, 6] in palliative/hospice patients with progressive disease and advanced rectal cancer patients awaiting surgery. This research [1-6] underpinned the development, testing, and implementation of an innovative ‘Move to Improve’ toolkit, which has improved patients’ functional mobility and understanding of PA, increased the delivery of PA in rehabilitative palliative cancer care by healthcare providers, and guided PA strategies and staff training at the organizational level.
Burke’s work [2-5] has contributed to a growing evidence base that shows that PA interventions have important physical and psychosocial health benefits in palliative/hospice and advanced colorectal surgical cancer patients. Evidence from this work has shown that PA results in improvements in treatment-related and advanced disease related symptoms including fatigue, pain, physical functioning, depression, and anxiety [2-5]. This work has also demonstrated that hospital-based high-intensity interval training involving a peer-based approach has positive effects on quality of life of advanced rectal cancer patients prior to surgery [4, 5]. Importantly, this work showed that it was not simply exercise alone that resulted in improvements in quality of life, but how the exercise programmes were designed and delivered; for example, by offering supervised in-hospital exercise sessions to instil confidence and peer-based support to promote social well-being [5].
Burke et al. [2, 3] examined outpatients’ experiences of participating in hospice-based Tai Chi and found that patients experienced respite from the adverse psychological (e.g., worries about the future) and physical (e.g., physical discomfort) consequences of their disease. This work also identified key aspects (e.g., breath work, gentle movements, meditation in motion) of group-based Tai Chi required for reaping health benefits and mitigating experiences of social death [2, 3]. Factors that encouraged hospice patients to participate in Tai Chi were also identified including tailored and supervised sessions, autonomy, perceived sense of safety, and social interaction. The results from this work showed that hospice-based mindful movement interventions such as Tai Chi are an important rehabilitative strategy that can help cancer patients self-manage distressing symptoms and improve quality of life.
Burke’s work [1-3, 6] has also identified factors at multiple levels of influence that impacted on the uptake and maintenance of participation in PA among advanced rectal cancer [6] and hospice patients [1-3]. Factors identified spanned individual (e.g., apprehension about PA-induced harm), interpersonal (e.g., group-based PA with peers), physical environment (e.g., limited facilities and access), community (e.g., personalized approach), and policy (e.g., absence of a policy and guidance for PA provision) levels. The results from this work showed that PA interventions that target multiple factors simultaneously are effective at successfully promoting enjoyment of, and adherence to, PA interventions in patients with advanced disease . This work [1] also assessed healthcare professionals’ current PA practices and identified a need to develop best practice recommendations and interventions to promote and integrate PA in routine rehabilitative palliative cancer care.
3. References to the research
[1] Burke, S., Utley, A., Belchamber, C., & McDowall, L. (2020). Physical activity in hospice care: A social ecological perspective to inform policy and practice. Research Quarterly in Exercise and Sport, 28, 1-14.
[2] Bradshaw, A., Phoenix, C., & Burke, S. (2020). Living in the mo(ve)ment: Exploring hospice patients’ experiences of participating in Tai Chi. Psychology of Sport and Exercise, 49, 101687 .
[3] Bradshaw, A., Walker, L., Borgstrom, E., & Burke, S. Tai Chi as therapy for alleviating experiences of social death in people with advanced, incurable disease: An ethnographic study. Qualitative Research in Sport, Exercise, and Health, in press.
[4] Brunet, J, Burke, S.M., Grocott, M.P.W., West, M.A., Jack, S. (2017). The effects of exercise on pain, fatigue, insomnia, and health perceptions in patients with operable advanced stage rectal cancer prior to surgery: A pilot trial BMC Cancer, 17, 153.
[5] Burke, S. M., Brunet, J., Sabiston, C. M., Jack, S., Grocott, M., & West, M. (2013). Patients' perceptions of quality of life during active treatment for locally advanced rectal cancer: The importance of pre-operative exercise. Supportive Care in Cancer, 21, 3345-3353.
[6] Burke, S. M., Brunet, J., Jack, S., Grocott, M., & West, M. (2015). Exploring the meaning of adhering to a pre-surgical exercise program for patients with advanced rectal cancer: A phenomenological study. Psychology of Sport and Exercise, 16, 88-95.
Grants:
2013-2017: National Institute of Health Research (NIHR-RfPB) (CoI): A pilot study to investigate improvements in physical fitness and quality of life resulting from a 9 week structured responsive endurance training programme (SRETP) following neoadjuvant chemoradiotherapy prior to elective rectal cancer surgery. £249,763
2019-2020: Research England QR SPF ( PI): Developing and implementing recommended best practices to inform policy on physical activity in palliative and hospice care. £28,000
4. Details of the impact
Burke’s research [1-6] involving palliative/hospice care and advanced colorectal surgical cancer patients has underpinned the development, evaluation and adoption of a ‘Move to Improve’ tool kit for promoting and embedding physical activity (PA) into rehabilitative palliative cancer care. The toolkit consists of: (i) an Interactive Information Book for patients [A] and; (ii) a healthcare provider PA Manual for prescribing, monitoring, and designing/delivering PA in routine care [B]. Prior to the development of ‘Move to Improve’ there were no interactive tools or best practice recommendations specific to the promotion of PA in rehabilitative palliative cancer care in the UK.
Burke has delivered 3 workshops and training sessions to Sue Ryder staff (N=28; nurses, physios, occupational therapists, Feb 27th 2020 and Dec 17th 2020) from 7 hospices in the UK (each of these hospices has a portfolio of 1500 case load per annum), 1 training session (Dec 17th 2020) with Macmillan staff (N=4; physios), and 1 workshop and 1 training session with staff (N=18; nurses, physios, consultants, rehabilitation therapists, Feb 13th 2020) from Dr. Sardjito General Hospital in Indonesia. The program of workshops and training was severely constrained by the Covid-19 pandemic. The sessions that were delivered increased healthcare providers’ knowledge on how to deliver PA to advanced cancer patients in hospice, community, and hospital settings as well as how to use the toolkit [C, D]. During Burke’s visit to Indonesia (Feb 9-16th 2020), she also engaged in patient involvement activities with advanced breast cancer patients to raise patient awareness of the benefits of physical activity and elicit views and opinions on the toolkit and any potential cultural issues.
Burke has tested the toolkit in clinical practice with advanced cancer patients from 7 Sue Ryder hospices [D]. Qualitative (e.g., interviews, brief notes) and quantitative (e.g., record logs) measures were used during 2020 to gather feasibility, acceptability, and early evidence of impact data [E, F, G]. 14 healthcare providers from 7 Sue Ryder hospices took part in the testing. This work was funded by a grant from Research England’s Strategic Priorities Fund awarded to Burke. Testing of the toolkit resulted in: (i) an improvement in patients’ functional mobility and understanding of PA; (ii) an increase in healthcare providers’ knowledge and delivery of PA provision and; (iii) the development of PA strategies and staff training at the organizational level [H].
Impact on patients’ functional mobility and understanding of PA.
An evaluation of the interactive book [A] with patients showed a measureable increase in patients’ functional mobility and overall understanding of PA. Healthcare providers reported improvements in patients’ balance ability (e.g. one leg stand) and functional ability (e.g., walking):
“One of our out-patient physiotherapists saw a patient who had heart disease, so he was in for heart failure, and she did it [used the patient book] with him and she got positive results from it. She said it was really good for improving the patients’ functional mobility. When she first initially saw him on the 1st of December - when she initiated the programme [Move to Improve] - his single leg stand was 10 seconds and on the 24th which is just under a month later he was at 60 seconds. This improvement helped him to increase his walking distance.” [H]
Patients found the interactive exercises (e.g., resistant band exercises) to be enjoyable . The exercises gave them confidence to safely engage in PA. Healthcare providers also reported that patients increased their knowledge and understanding of the types of activities they should be doing and how to overcome barriers . They reported improvements in patients’ understanding of the psychological benefits of PA and how to incorporate activities into their day-to-day lives:
*“Quite often our patients want to do exercises but don’t know how to incorporate it into their daily lives. One of the things that I particularly like about Move to Improve is that it really gives direction about how to incorporate exercise into patients’ daily function. It is helping our patients better understand the benefits of physical activity and how to be more active.” [H]
Impact on healthcare providers’ knowledge and delivery of PA
Testing of the patient book [A] showed an increase in healthcare providers’ delivery of PA in clinical practice. The patient book provided healthcare professionals with novel exercises that they incorporated into routine care:
*“I am regularly using two of the Move to Improve activities - activity # 3 chair leg raises and activity # 10 chair sit ups. And sometimes just bed exercises when standing from the bed is all the exercise that the patient is able to do. So because of this [Move to Improve] I am doing more functional exercises with our patients, which is quite good.” [H]
The healthcare professional manual developed by Burke [B] led to an increase in healthcare providers’ (n=46) knowledge of how to deliver PA when caring for advanced cancer patients who have limited functional mobility and complex, high dependency needs. Healthcare providers stated that the manual was a useful tool that helped them to feel more knowledgeable about how to counsel, prescribe, monitor, and promote active lifestyles when caring for patients. It has been cascaded to a wide range of allied health professionals (e.g., nurses, occupational therapists, physiotherapists) across Sue Ryder, as well as to Dr. Sardjito General Hospital who work within multidisciplinary teams to increase knowledge of PA as a rehabilitation strategy. These healthcare providers combined give support to over 10,000 patients receiving advanced cancer care on an annual basis.
*“It [the health professional manual] is a very good resource that we have been sharing with our non-allied health professionals like our nursing assistants who work in the hospice, which has boosted their knowledge of the benefits of exercise and reinforced why we tell them it’s important to incorporate physical activity into their day to day contact with patients.” [H]
The patient book [A] was used as a resource to give to patients to support the care provided to patients by healthcare professionals:
“We don’t have any literature that we give to our patients at all about physical activity. This [the patient book] really supports what I spend quite a lot of time encouraging patients to do and it’s so nice to have something to give them.” [H]
The patient book was also reported as a useful tool that improved job satisfaction from seeing patients benefits from utilizing the book and participating in the exercises offered at the hospice/hospital . The manual was viewed as an important source of information for staff on how to safely and effectively promote PA in palliative rehabilitative cancer care [J].
Impact on rehabilitative care at the organizational level
The adoption of the toolkit [A, B] in 8 advanced cancer care establishments has changed the way palliative care organizations (i.e., Sue Ryder and Dr Sardjito General Hospital) deliver physical activity in rehabilitative care in numerous ways [I]. First, Sue Ryder has embedded ‘Move to Improve’ into staff nurse training, and the use of this is currently under review to become mandatory training for all their health professionals and incorporated into benchmarking and core competencies.
“The manual for health professionals has been used, in some of our [Sue Ryder] hospices, as part of our staff nursing training and it is currently under review to become mandatory training for all our health professionals.” Research Lead, Sue Ryder **[D]
Second, Sue Ryder has identified a PA champion at 6 of their hospices who is leading on the delivery and monitoring of physical activity in rehabilitation cancer care (and 4 hospices have created designated spaces within each hospice for the delivery of activity sessions) . Third, both Sue Ryder and Dr. Sardjito General Hospital have recognized the importance of physical activity prescription and monitoring and have begun embedded best practice recommendations developed by Burke within their strategy :
“Dr Burke’s work is leading the way in the use of research within our services to benefit patients. Health and social care professionals at all 7 of our palliative care sites across the UK are using her physical activity manual and interactive information patient book…Dr Burke’s work has acted as the catalyst to incorporate physical activity into our Sue Ryder strategy.” Professional team lead for Education, Sue Ryder [I]
Fourth, testing of the toolkit in clinical practice showed a measureable increase in the number of mindful movement (e.g., Tai Chi, yoga) and circuit sessions delivered to patients (at 5 out of the 7 Sue Ryder hospices). The toolkit was reported to have enabled clear and consistent guidance on the design and delivery of these sessions and facilitated good practice. Finally, the toolkit has been shared with Hospice UK and Macmillan who have begun working with Burke to develop PA recommendations to inform policy as well as host and promote materials online.
5. Sources to corroborate the impact
[A] Interactive Information Book (IIB) for patients (January 2020)
[B] Physical Activity Manual (PAM) for healthcare providers (January 2020)
[C] Letter from the Clinical Oncologist, Universitas Gadjah Mada/Dr Sardjito Hospital, Yogyakarta, Indonesia (letter dated 03/12/2020)
[D] Letter from the Research Lead, Sue Ryder (letter dated 10/12/2020)
[E] Sample - Physical activity record log (collected during 2020)
[F] Sample - Brief notes: Service user (patient views of “Move to Improve”) (collected during 2020)
[G] Sample - Brief notes: Healthcare professional (collected during 2020)
[H] Qualitative results (i.e., themes, sub themes, and supporting quotes) from the testing of ‘Move to Improve’ in clinical practice (obtained during 2020)
[I] Letter from the Professional team lead for Education, Sue Ryder (letter dated 13/01/2021)
[J] Letter from physiotherapist, Sue Ryder (letter dated 20/12/2020)