Joseph Bradley – Sensory processing patterns in Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME)
“Being awarded the grant and having the feedback from the panel increased my confidence in taking forward research activities, and I hope the experience and outcomes will support future research activities. The award has been used to buy the necessary resources and allowed me to devote some time to taking the project forward. I would encourage other AHPs who are interested in research to start small and make links with universities so you have their support and expertise as you are learning.”
Profession & current role
I work as an occupational therapist at the Yorkshire Fatigue Clinic, a service specialising in assessment and rehabilitation for people with persistent fatigue, in particular Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. We work collaboratively with people with CFS/ME at all severities, from being able to work or study, or bed-bound.
As a clinical area where understanding of the condition and effective treatment is still lacking, we are always interested in new research about the condition and it’s management and have been involved in recruiting and data collecting for national research studies.
Employer (at the time of the award)
Yorkshire Fatigue Clinic
Title of study
Sensory processing patterns in Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME)
Will this research influence your future research activity?
The research project is designed as a pilot project to evaluate the method of research, and inform progression to a larger extensive study, which may be as part of doctorate studies. Additionally, the process of design and implementing the study has increased my network with other researchers and therefore I hope that future collaboration with them may be possible.
Yorkshire Fatigue Clinic, York Eco business Centre, Amy Johnson Way, York YO30 4AG
This study aims to:
• Pilot a research methodology to identify sensory processing patterns and styles in response to everyday sensory stimuli in adults with CFS/ME
• Evaluate feasibility and design of the study for application in a full-scale research project – ascertaining resources and capacity required, potential problems in implementing the method at a larger scale, and determining an appropriate sample size for statistical power
A convenience sample of 25 adult volunteers with self-reported CFS/ME will be recruited through local support groups for CFS/ME. Data will be collected from participants via an online or paper questionnaire, and include completion of the Adolescent/Adult Sensory Profile (AASP) – a 60 item self-report questionnaire that evaluates behavioural responses to everyday sensory experiences, self-assessed level of severity of illness using the ME Association disability rating scale (0-100%), gender, age, and comorbidities.
Statistical analysis will be used to identify differences in processing styles between collected data and normative values of the AASP, and to examine whether certain variables affect processing profile.
Evaluation of the pilot will be conducted by the research team to identify feasibility and modifications to the method for translation into a larger scale statistically powered study, considering: recruitment, eligibility criteria, population representation, consent rates, completion rates, feedback from participants and investigators, resources, and adverse events.
One Year Update – November 2018
Over the past year on receipt of the grant I was able to work alongside colleagues at the University of Cumbria and develop the research protocol and submit a research ethics application in January 2018. This was approved in March 2017, but unfortunately progress with recruitment and data collection was delayed by supplier issues for the standardised sensory profile questionnaire, despite previous confirmation of stock and supply. This was finally received in June 2018, but then we hit further delays in access to the university’s online survey website which was to be used to collect data – necessary due to the output format for statistical analysis. We were finally able to access this and open the online questionnaire for data collection mid-August, advertising for volunteers through the local patient support group. At this point we have had 23 responses and are hoping for 25.
The questionnaire will be open until the end November 2018. The questionnaire results will then be preliminarily analysed to determine the appropriate statistical analysis. As a pilot study analysis of the process has been ongoing, collecting information from participants and the research team to inform future research.
Impact of the research on practice
Outcomes of the pilot project are yet to be collated an analysed so have not directly impacted research. However, access to the standardised tool has been helpful in clinical practice, meaning sensory profiling can be used to help understand an individual and their occupational engagement and difficulties, and experiment with making occupational changes with a sensory focus to improve health management and wellbeing. It has also spurred further reading and research into the area and therefore increased the clinical team’s knowledge and confidence in using sensory approaches with our client group where there has been little research and understanding of sensory issues.
How this award has helped my research career/confidence
I have developed links with universities and experienced researchers supporting future research, and interactions with them have furthered my knowledge about research methods. These interactions and leading the research project has also helped me to have increased confidence in my own research knowledge and experience, and developed experience in identifying possible problems that may arise in research projects. I plan to use these experience, links, and confidence to pursue a PhD in the future – if appropriate using this pilot study as a basis for further research projects.