Impact of a specific consultation for patients with progressive forms of multiple sclerosis on the response to their unmet care needs: a cross-sectional study

• Published in: Multiple sclerosis and related disorders Vol. 72; p. 104609
• Main Authors: Gómez-López, A, Benito-León, J, Labiano-Fontcuberta, A, Moreno-García, S, Salgado-Cámara, P
• Format: Journal Article
• Language: English
• Published: Netherlands Elsevier B.V 01-04-2023
• Subjects: Assessment of healthcare needs; Caregivers; Cross-Sectional Studies; Health education; Health Services Needs and Demand; Humans; Informal caregivers; Multiple Sclerosis - therapy; Multiple Sclerosis, Chronic Progressive - therapy; Organizational innovation; Progressive multiple sclerosis; Referral and Consultation; Social work; Progressive multiple sclerosis; Informal caregivers; Organizational innovation; Health education; Social work; Assessment of healthcare needs
• ISSN: 2211-0348; 2211-0356
• DOI: 10.1016/j.msard.2023.104609

•We must identify the unmet healthcare needs of patients with progressive MS to manage them.•Information, social support and specialist coordination are amongst the main ones.•Informing and supporting their informal caregivers is crucial in their healthcare.•A specific consultation for patients with progressive MS is one way to address their needs.
As their disease evolves, most patients with progressive forms of multiple sclerosis (MS) develop particular healthcare needs that are not always addressed with usual follow-up. To adapt neurological care to these patients, we created a specific consultation for patients with progressive MS in our centre in 2019.
To explore the main unmet care needs of patients with progressive MS in our setting, and to establish the usefulness of the specific consultation to address them.
Literature review and interviews with patients and healthcare professionals were conducted to identify the main unmet needs in routine follow-up. Two questionnaires were developed, assessing the importance of the unmet needs identified and the usefulness of the consultation to meet them, for patients under follow-up in the specific consultation and their informal caregivers.
Forty-one patients and nineteen informal caregivers participated. The most important unmet needs were the information about the disease, access to social services and coordination between specialists. A positive correlation was found between the importance of these unmet needs and the responsiveness to each of them in the specific consultation.
The creation of a specific consultation may improve attention to the healthcare needs of patients with progressive MS.
First, an exhaustive literature search was carried out. After an assessment of the limitations of the usual multiple sclerosis medical practice, a specific consultation for progressive forms of multiple sclerosis was created. There was an updated literature search on the unmet needs of patients and caregivers. For their identification, interviews were conducted with neurologists specialised in multiple sclerosis, nurses, patients, and their caregivers. A review according to the current literature was made and a questionnaire was elaborated. Candidate patients from our practice, and their carers if appropriate, were included. Patients and their caregivers completed the questionnaire about unmet needs, and subsequently, they assessed the degree of coverage of needs in our specific consultation. The final objective is to assess the real impact of the creation of this consultation on our patients and their carers. [Display omitted]