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. 2023 Nov-Dec;25(6):273-277.
doi: 10.7224/1537-2073.2023-075. Epub 2023 Nov 8.

Addressing the Needs of Multiple Sclerosis Caregivers From Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol

Rosalind C Kalb  1 , Deborah Miller  2 , Jon Strum  3 , Sara Loud  4
Affiliations

Addressing the Needs of Multiple Sclerosis Caregivers From Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol

Rosalind C Kalb et al. Int J MS Care. 2023 Nov-Dec.

Abstract

Background: Caregivers of individuals with multiple sclerosis (MS) have emotional, instrumental, wellness, and social needs beginning with their partner's diagnosis and continuing throughout the disease course. Their feelings of grief, anxiety, depression, isolation, and fatigue, as well as the limited time they have for their own self-care, impact their health and quality of life; yet caregiver needs often go unrecognized by health care providers, extended family, friends, and employers. This project creates an online caregiver resource that will benefit caregivers, enable MS clinicians to offer caregivers the support and resources they need in a timely and time-efficient way, and thereby benefit individuals with MS as well.

Methods: We assembled a caregiver advisory board to help us identify caregiver needs and corresponding resources starting from diagnosis and continuing throughout the disease course. We then surveyed the larger MS caregiver community for validation and refinement of the resource list. Each of the identified resources was then vetted for quality and accuracy by the authors.

Results: The caregiver resources are now ready to be put into a dedicated website that will allow easy access to information, support, tools, and resources as needed.

Conclusions: The process of creating this caregiver resource confirmed longstanding findings in the literature about the caregiving role. The resource that has been created will benefit caregivers of individuals with MS, their loved ones, and MS clinicians.

Keywords: caregiver health; multiple sclerosis; online; survey.

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Conflict of interest statement

DISCLOSURES: Dr Miller acknowledges that she has rights to intellectual property underlying the Multiple Sclerosis Performance Test, currently licensed to Biogen and Qr8 Health. Mr Strum has received sponsorship fees from Merck, the National Multiple Sclerosis Society, and Sanofi. He has received consulting fees from Accelerated Cure Project for MS and EMD Serono, and honoraria from Novartis. Dr Kalb and Ms Loud have nothing to disclose.

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