Using Patient Reported Outcomes to Evaluate MS Specialist Nursing in the UK

Thursday, June 2, 2016
Exhibit Hall
Amy Bowen, RN, MA , Multiple Sclerosis Trust, Letchworth, United Kingdom of Great Britain and Northern Ireland


The MS Trust is a UK national charity which improves the lives of people with MS by providing high quality information and supporting MS health professionals across the UK. The Trust’s ‘Generating Evidence in MS Services’ (GEMSS) programme, established in 2012, supports MS specialist nurse services to evaluate their services.  Sixteen teams took part during 2014/15, with the aim of delivering evidence-based service improvement.  Data collected included caseload, activity, key process indicators and a specially designed patient survey. 


To analyse the responses to the GEMSS patient survey used by all participating MS teams to provide key outcomes data for the value and impact of MS specialist nurses.


The GEMSS patient survey was co-developed by the MS Trust and participating MS teams to collect data on service utilisation, patient experience and patient reported service outcomes, using validated questions where possible.  It was piloted with people with MS.  MS teams sent the survey to a random sample from their caseload for completion online or in writing. Responses were all anonymous.  Data entry and analysis was undertaken by the MS Trust and results reported back to the teams. 

The MS Trust undertook a meta-analysis of thirteen teams’ survey responses (n=1254 respondents) as part of their detailed evaluation of MS services presented in the GEMSS final report in November 2015.  The Trust has subsequently developed a survey service, making the survey available to all MS care providers (including allied health professionals and multidisciplinary teams). 


Many key findings and evidence of outcomes achieved by the MS nurses in GEMSS were based on the survey data.  Survey responses showed us that people on DMDs get more contact from MS nurses, indicating that people with progressive MS may be missing out, and that MS nurses perform well against national measures of patient experience. For instance, 95% of people with MS said they were ‘definitely’ treated with dignity and respect. Additionally, MS nurses prove to be economically effective, saving over £77K in ambulatory costs per year. These programme findings would not have be possible without the patient surveys, and provide a strong case for the value of the nurses.  A further nine teams have run the survey since the GEMSS programme, building up a valuable set of benchmarking data about MS services.


The GEMSS patient survey demonstrates the value of patient reported outcomes in evaluating MS services, as well as an innovative example of a voluntary sector organisation collaborating with the health service to drive service improvement.