Research by Dr Sivaraman Nair

All of our attendees carry out a piece of research in an area of MS clinical practice or treatment that interests them.

This project was awarded runner up in the MS Academy MasterClass Project Awards Autumn 2018, and this snapshot gives you a quick idea of what Dr Nair found and why. If you want to learn more, just click through to his full slide set, or follow the links within the snapshot.

If you would like to contact the Dr Nair, drop us a line and we’ll put you in touch where possible.

 

Aim

To develop a questionnaire to identify the unmet needs of people living with multiple sclerosis (MS) suitable for use in clinics and through web-based systems such as the UK MS register.

‘Unmet needs’ determine the needs not currently being met by MS services. ‘Need’ is determined as follows:

‘Requirement of individuals to enable them to achieve, maintain or restore an acceptable level of socal independance or quality of life, as defined by the particular care agency or authority’

(‘The health of the nation: a strategy for health in England’: 1992)

Headlines

  • The Un-MS questionnaire was developed through an iterative process across health professionals, patients and available literature.
    Key un-met need included: a lack of information about treatment options, lack of support around relapse, fatigue, memory and lifestyle factors such as movement and nutrition.
    Limitations of the questionnaire were around sample size and variety, with most of the sample being at a similar stage in their MS and receiving disease-modifying treatment.

Key findings

  • Phase 1: The team carried out a literature review and a review of existing questionnaires before beginning their own.
  • Phase 2: They carried out a survey amongst clinicians and patients to create ‘long list’ of topics then condensed this into a short questionnaire.
    • This list of 43 questions was given to 20 people living with MS
    • It was accompanied by a qualitative interview and a question around the patient’s satisfaction with the questionnaire.
  • Phase 3: The final ‘Un-MS questionnaire’ was tested alongside a review of other socio-demographic data including their EDSS score, use of disease-modifying treatments (DMTs) and their MS impact score (MSIS-29).
  • A sample of 51 people in middle age, 37 of whom were on a DMT and with an EDSS score of between 4 and 6 were tested using the Un-MS questionnaire twice with a 2 week gap between tests.
  • Common un-met needs included:
    • information about treatment available
    • services
    • relapse
    • fatigue
    • memory
    • lifestyle, e.g. movement and nutrition

Core recommendations

  • Repeat the study again with a larger cohort and a more varied sample (most were on a DMT).

 

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