MS needs 'unmet': survey

One in four Australians with MS surveyed for a national research study report having unmet medical and allied health service needs.

The MS Australia study Living with Multiple Sclerosis in 2019 examined the specific and emerging needs of people affected by MS to support decisions about what, when and how to offer services.

The organisation engaged KPMG to conduct independent research with people living with MS, their families and carers to better understand:

• the experience of people living with MS, their families and carers;
• the extent to which they are satisfied with current supports, services and information and any unmet demand;
• the emerging services that are likely to meet their needs into the future.
   

KPMG surveyed 2261 people living with MS and 135 family members and carers across Australia, between March and May 2019. The quantitative research was informed by a baseline review and supplemented by 20 in-depth interviews.

A research summary report said the survey showed there was a keen interest in services beyond medical specialists, particularly for services that supported mental wellbeing and maintaining lifestyle.

The research also highlighted challenges with access and affordability of services to better meet the changing needs of people living with MS, along with their families and carers.

“When considering how to meet these needs, it is important to consider personalisation, as the experience of living with MS is unique to each individual,” the report said.

The professional support network required for those living with MS could be wide and diverse.

The report said 41% of people living with MS regularly used four or more services. These often included neurologists, GPs, physiotherapists, massage therapists and MS or continence nurses.

Half of people surveyed stated they contacted MS organisations for further information about selection of new supports and services.

One in four (27%) people had an unmet service need that most often arose from affordability (41%) or accessibility (25%).

“The people most likely to have unmet needs are younger people who are living well,” the report said.

“The largest critical unmet service needs at this time were physiotherapy or massage therapy.”

The MS community was increasingly using technology to access information and monitor the disease journey.

“While the majority of people who track their symptoms don’t use technology (60%), some are now turning to cognitive brain training (23%), symptom diary applications (18%) or wearable technology (16%), particularly at diagnosis.

“For those not yet using technology, there is strong levels of interest (61%) in using it.

“These channels have the potential to become an increasingly important connection and integration point in service delivery,” the report said.

Other key survey findings included:

• 79% of people diagnosed with MS were taking a disease-modifying therapy (medication that modifies the activity of the immune system to slow the frequency and severity of attacks to the central nervous system).
• 69% of carers reported that caring has an impact on family and relationships.
• 64% reported an effect on employment and ability to earn an income.
   

MS Australia CEO Deidre Mackechnie said the report would provide valuable evidence for ongoing advocacy at the national level, with a particular focus on advocating for systemic improvements in the health, aged-care and disability sectors.

Image credit: ©stock.adobe.com/au/Chinnapong