RT Journal Article
T1 Long-term prognosis communication preferences in early-stage relapsing-remitting multiple sclerosis.
A1 Castillo-Triviño, Tamara
A1 Gomez-Ballesteros, Rocio
A1 Borges, Monica
A1 Martin-Martinez, Jesus
A1 Sotoca, Javier
A1 Alonso, Ana
A1 Caminero, Ana B
A1 Borrega, Laura
A1 Sanchez-Menoyo, Jose L
A1 Barrero-Hernandez, Francisco J
A1 Calles, Carmen
A1 Brieva, Luis
A1 Blasco-Quilez, Maria R
A1 Garcia-Soto, Julio Dotor
A1 Del-Campo-Amigo, María
A1 Navarro-Canto, Laura
A1 Agüera, Eduardo
A1 Garces-Redondo, Moises
A1 Carmona, Olga
A1 Gabaldon-Torres, Laura
A1 Forero, Lucia
A1 Hervas, Mariona
A1 Mauriño, Jorge
A1 Sainz-de-la-Maza, Susana
K1 Early-stage
K1 Long-term prognosis communication
K1 Patients’ preferences
K1 Relapsing-remitting multiple sclerosis
K1 Shared decision-making
AB Multiple sclerosis is one of the most common causes of neurological disability in young adults with major consequences for their future lives. Improving communication strategies on prognosis may help patients deal with the disease and adjust their long-term life goals. However, there is limited information on patients' preferences of long-term prognosis (LTP) communication and associated factors. The aim of this study was to describe patients' preferences and assess the factors associated with LTP communication preferences in early-stage relapsing-remitting multiple sclerosis (RRMS) patients. A multicenter, non-interventional study was conducted. Adult patients with a diagnosis of RRMS, a disease duration from first attack ≤ 3 years, and an Expanded Disability Status Scale (EDSS) score of 0-5.5 were included. The Prognosis in MS questionnaire was used to assess how much patients want to know about their LTP. Different patient-reported measures were administered to gather information on symptom severity, pain, fatigue, mood/anxiety, quality of life, stigma, illness perception, feeling of hopelessness, self-efficacy, information avoidance and coping strategies. Cognition was assessed using the Symbol Digit Modalities Test (SDMT). A multivariate logistic regression analysis was performed to assess the association between LTP information preference and demographic and clinical characteristics, as well as patients' perspectives. A total of 189 patients were included (mean age: 36.1  ±  9.4 years, 71.4% female, mean disease duration: 1.2  ±  0.8 years). Median EDSS score was 1.0 (IQR = 0.0-2.0). A proportion of 68.5% (n  =  126) of patients had never discussed LTP with their neurologists, whereas 69.2% (n = 126) reported interest in knowing it (73.5% at diagnosis). Bivariate analyses suggested that patients were significantly more likely to have higher LTP information preferences if they were male and had a lower SDMT score. Male gender and a lower SDMT score were predictors of LTP information preferences. Patients with early-stage RRMS want to discuss their LTP shortly after diagnosis. Understanding the factors involved may be useful to design individualized communication strategies.
PB Elsevier
YR 2022
FD 2022-06-14
LK http://hdl.handle.net/10668/22397
UL http://hdl.handle.net/10668/22397
LA en
NO Castillo-Triviño T, Gómez-Ballesteros R, Borges M, Martín-Martínez J, Sotoca J, Alonso A, et al. Long-term prognosis communication preferences in early-stage relapsing-remitting multiple sclerosis. Mult Scler Relat Disord. 2022 Aug;64:103969
DS RISalud
RD Apr 10, 2025