Understanding the Unmet Needs of People with MS at Diagnosis and Throughout Their Care Journey: Insights from a Survey-Based Study

Abstract

INTRODUCTION: Multiple sclerosis (MS) has a broad range of symptoms and heterogenous trajectory that requires individualised care. To optimise shared decision-making between healthcare professionals (HCPs) and people with MS (PwMS), it is important to understand communication needs from the patient perspective at diagnosis and throughout their care journey. METHODS: Two multinational online surveys were conducted to explore (1) communication needs around the time of diagnosis, and (2) PwMS empowerment in communicating their specific needs and symptoms. Questionnaires included ten close-ended questions and were shared among 100 PwMS aged 18-50 years in Australia, Spain, the UK and the USA. Anonymised data were analysed by a core panel of HCPs, PwMS and patient advocacy group representatives, and key recommendations were agreed. RESULTS: The majority of respondents were female (65-80%) and from the UK (80-87%). PwMS and caregivers are often overwhelmed and feel 'lost' at the time of diagnosis. Early regular contact is critical for effective delivery of key information and building a trusting relationship. PwMS value a clear explanation of the healthcare team and next steps, but only around a quarter (26%) had HCP roles clearly explained. PwMS are often uncertain if health changes are related to MS and 42% reported not feeling comfortable discussing 'invisible' symptoms such as cognitive, mood and emotional changes. Most respondents (54%) reported that their MS nurse was the person they were most likely to consult. Support services were not routinely offered; only 26% were informed about patient support groups. The most reported benefit of an MS-specific patient group was 'feeling less alone'. CONCLUSION: Regular HCP contact after diagnosis, peer group support for PwMS and their caregivers, signposting of reliable and accurate online resources and the timely offer of support services, including psychological support, should be routine elements of care from the point of diagnosis.; Multiple sclerosis (MS) is a long-lasting illness that affects the brain and spinal cord. In MS, the body’s own defence system attacks a coating around the nerves, which causes damage. This leads to many symptoms. Some are easy to see, like trouble walking or speaking. Others are ‘hidden’, such as feeling very tired, changes in mood, bladder problems or trouble remembering things. These hidden symptoms can impact quality of life, but they are often missed or ignored. The MS in the 21st Century (MS21) group works with people who have MS, doctors, nurses and patient support groups to make care better. To learn more about what people need, MS21 talked to 30 people recently diagnosed with MS in five European countries. They also did two online surveys with 100 people each in Australia, Spain, the UK and the USA. One survey asked about needs at diagnosis. The other asked about helping patients feel comfortable speaking with their care team. Four important needs came up: first, clear communication about what will happen next and who is in the care team; second, helpful information given at the right time, including for families; third, trusted resources like reliable websites and MS nurses; fourth, support services, such as counselling and patient groups to help with feelings of loneliness. Many people wanted more time with their doctors, more discussion about hidden symptoms and regular offers of emotional support. Meeting these needs early could help people manage MS better and feel more confident about their care.