Support app may boost confidence after MS diagnosis

An app-based, one-to-one peer support program from Shift.ms that connects people newly diagnosed with multiple sclerosis (MS) with someone more experienced may help them feel more confident in managing their condition. This could provide self-reported psychological benefits for both people in the pairing.

That’s according to five-year data from the program, called the Buddy Network, which showed that confidence in self-management nearly tripled after six months. The data also showed an increase in the number of newly diagnosed people who felt socially connected, and most of their experienced buddies also reported that their outlook on living with MS was better.

The findings were presented by Victoria Kirk, head of growth and engagement for Shift.ms, in Charlotte, North Carolina.

‘This five year evaluation clearly demonstrates a structured one to one peer support that can act as a really highly scalable, low cost adjunct to standard medical care,’ Kirk said.

‘It successfully targets the vital psychosocial needs that are routinely left unmet in really overstretched practices and by more than doubling a patient’s confidence, it powers [people with MS] to make proactive and informed decisions early on in their care.’

Shift.ms is a digital community that provides social and emotional support to people newly diagnosed with MS – at no cost. Although the charity is headquartered in the UK., its online format means people around the world can use its services.

The goal of Shift.ms and its Buddy Network is to help people with MS navigate their diagnosis and take a more active role in their health early in the disease course.

‘An MS diagnosis is life-changing and it often introduces profound uncertainty and isolation,’ Kirk said.

This can make it harder for a person to feel confident and make informed decisions about their healthcare. This so-called ‘decision paralysis’ may make treatment decisions harder.

Clinicians often don’t have enough time during an appointment to provide all the support a newly diagnosed person may need.

‘Out of necessity they prioritize treatment pathways, acute symptom management, and periodic monitoring,’ Kirk explained. ‘So, as a result, the psychological and just the daily lifestyle challenges can often be left insufficiently addressed during appointments.’

The Buddy Network was launched in 2020 to help bridge that gap. Through a structured pairing system, a newly diagnosed person is matched with a trained peer volunteer who has lived with MS for at least two years.

The matching algorithm, developed in partnership with clinicians and shaped by the lived experience of people with MS, considers demographic factors, such as age, location, and gender, as well as clinical factors, including MS type, treatment choices, and symptoms.

Lifestyle factors, such as employment and hobbies, also play a role. The newly diagnosed person seeking a buddy can prioritise which factors are most important to them.

‘It’s not just about the medical connection, it is about their life, and it is about the holistic connection that humans need to make beyond the disease itself,’ Kirk said.

Buddies are carefully vetted and endorsed by healthcare providers involved in their MS care to help ensure they are prepared to provide support. After that, they must go through a training program before they can be paired up.

Once matched, the peers enter a six-month program hosted on the Shift.ms app, with moderation available throughout the pairing. While designed to be app-based for safety, pairs can opt for video or in-person contact if they wish to.

Across the five-year evaluation period, 2,084 people with MS requested a peer mentor, of whom 1,028 were successfully matched. The program now has 362 trained buddies.

At the start of the process, 22% of newly diagnosed people reported feeling confident in their ability to manage life with MS and make informed care decisions, a proportion that rose to 61% at the end of the six-month program.

‘That to me demonstrates that structured peer support can effectively equip them with the psychological tools needed to make proactive and informed decisions, alongside their clinical teams,’ Kirk said.

Also, 175 newly diagnosed people with MS reported feeling socially connected at the program’s start, a number that increased to 627 individuals at the end of the program.

The self-reported benefits extended beyond the newly diagnosed seeker; a ‘reciprocal effect’ was observed in the buddies. Most experienced buddies (83%) also reported an improved outlook on living with MS, ‘which just shows that peer support is not a one-way street,’ Kirk said.

‘Empowering more experienced [people with MS] to reflect on their own journey helps give purpose to a diagnosis that often feels like it has no meaning, and bolsters long-term resilience,’ she added.

Ultimately, the program’s goal is not to replace standard medical care but rather to provide support alongside it.

‘It does not replace clinicians, but we believe it does extend a clinician’s reach,’ Kirk said. ‘It’s a shared lived experience and provides continuous on-demand support to get you over the hurdles that MS always throws at you.’

Read more helpful information in our Choices booklet if you have been newly diagnosed with MS