Making the Move to Adult Care Easier for MS

Credibility

Interest

Key Takeaway

Many young people with neuroimmune conditions and their caregivers feel unprepared to move from pediatric to adult care, but structured education, steady provider relationships, and support groups can help make the change easier and safer.

What They Found

Most caregivers (83%) felt their child was not ready to switch to adult care, though about one-third of patients were curious about the change; this shows a difference between worry and interest.Both patients and caregivers worried that new adult doctors would not know the patient's medical history — like handing your medical story to a stranger instead of someone who already knows you.Many patients lacked practical knowledge needed for the change: they didn't know clinic details (81%), didn't have an emergency plan (77%), and were unsure about how insurance would change (81%).Patients said two things would help most: a step-by-step education program about transition and a special visit just for transition planning — like a practice run before the real move.More than half preferred keeping the same provider during the transition (continuity), and most supported joining support groups, showing that steady care and peer support are comforting and useful.

Who Should Care and Why

MS patients and their families should care because moving to adult care without preparation can cause missed treatments or confusion about medications and insurance, which could affect symptom control.Caregivers benefit from knowing these gaps so they can ask for a clear plan, emergency instructions, and help with insurance — like having a checklist before a big trip.Healthcare providers (neurologists, nurses, social workers) should care because offering structured education and a dedicated transition visit can reduce mistakes and anxiety and help patients stick with treatment.Younger patients who are curious about adult care can use educational programs or transition appointments to build confidence, much like rehearsing a new routine before starting a job.Support groups matter: sharing experiences with others who have made the switch can show real examples and practical tips, similar to asking friends for packing advice before moving house.

Important Considerations

This study was small (31 people) and describes what these respondents reported at one point in time, so results might not represent every person with MS or other neuroimmune disorders.The group included different diagnoses and backgrounds, so specific needs may vary by condition — what helps one person with MS might differ for someone with a rare antibody disease.Because this was a survey about feelings and plans, it shows what people think they need, not whether those solutions definitely improve health outcomes; patients should discuss options with their care team.

Categories:

Caregivers Living with MS Mental Wellness

Article Topics:

adolescentschildrenmultiple sclerosisneuroimmunology

Whether you’ve recently been diagnosed with Multiple Sclerosis (MS) or are seeking to broaden your understanding of this complex, neurodegenerative disease, navigating the latest research can feel overwhelming. Studies published in respected medical journals like Journal of child neurology often range from early-stage, exploratory work to advanced clinical trials. These evidence-based findings help shape new disease-modifying therapies, guide symptom management techniques, and deepen our knowledge of MS progression.

However, not all research is created equal. Some clinical research studies may have smaller sample sizes, evolving methodologies, or limitations that warrant careful interpretation. For a more comprehensive, accurate understanding, we recommend reviewing the original source material—accessible via the More Details section above—and consulting with healthcare professionals who specialize in MS care.

By presenting a wide range of MS-focused studies—spanning cutting-edge treatments, emerging therapies, and established best practices—we aim to empower patients, caregivers, and clinicians to stay informed and make well-informed decisions when managing Multiple Sclerosis.

Back to News