(75) What aspects of treatment are important to people living with Neuromyelitis Optica Spectrum Disorder (NMOSD)? A qualitative study

Background: : NMOSD is a rare, autoimmune disease that affects the optic nerve and spinal cord, leading to vision loss and paralysis. Several treatments aim to suppress inflammation and prevent future relapses. There has been little research exploring patients’ experience of NMOSD and what matters most to people when making treatment decisions.

Objective: : To explore patients’ experiences of NMOSD and treatment and to identify aspects of NMOSD treatments that are important to patients.

Methods: : A review of published literature and one-to-one virtual interviews with expert physicians were used to develop study materials for virtual focus groups with adults living with NMOSD. Ethics approval was obtained. Participants were asked to rank a list of treatment attributes in order of importance before taking part in the focus group. Focus group discussions followed a semi-structured guide. Deidentified transcripts were thematically analysed using MAXQDA.

Results: : The literature searches identified 9 clinical trials, 6 qualitative studies and 6 quantitative studies exploring patients’ experiences of NMOSD and treatment. The list of treatment attributes identified from the review were refined in interviews with two expert physicians. Seven women living with NMOSD in the USA (mean age 37 years) took part in two focus groups.
Themes identified from the focus groups included 1) symptoms and their impact, 2) impacts on quality of life 3) experiences and perceptions of relapse 4) experiences and perceptions of treatment, 5) important aspects of treatment.
Participants reported experiencing symptoms including nerve pain, visual impairment, fatigue, swelling and paralysis. Symptoms impacted activities of daily living (e.g., walking, personal care), family life, the ability to work, and independence (e.g. being unable to drive because of vision loss).
Participants identified the prevention of relapse and disability as the most important aspects of NMOSD treatment. Other attributes of importance to participants were improvement of symptoms, the risk of side effects, the need for additional treatment (e.g. steroids), regulatory approval, out-of-pocket costs, mode and frequency of administration, safety in pregnancy and requirement for vaccination.

Conclusions: : This qualitative study highlighted the impacts of NMOSD and identified aspects of treatment that may be important to people living with NMOSD when making decisions about treatment. The findings will be used to develop a quantitative survey to assess the relative importance of each attribute.

Sponsorship:: The study is sponsored by Amgen Inc.