000131828 001__ 131828
000131828 005__ 20240319081032.0
000131828 0247_ $$2doi$$a10.1016/j.msard.2022.103969
000131828 0248_ $$2sideral$$a137005
000131828 037__ $$aART-2022-137005
000131828 041__ $$aeng
000131828 100__ $$aCastillo-Triviño, Tamara
000131828 245__ $$aLong-term prognosis communication preferences in early-stage relapsing-remitting multiple sclerosis
000131828 260__ $$c2022
000131828 5060_ $$aAccess copy available to the general public$$fUnrestricted
000131828 5203_ $$aBackground
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.
Objective
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.
Methods
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.
Results
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.
Conclusions
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.
000131828 540__ $$9info:eu-repo/semantics/openAccess$$aby-nc-nd$$uhttp://creativecommons.org/licenses/by-nc-nd/3.0/es/
000131828 590__ $$a4.0$$b2022
000131828 591__ $$aCLINICAL NEUROLOGY$$b69 / 212 = 0.325$$c2022$$dQ2$$eT1
000131828 592__ $$a0.92$$b2022
000131828 593__ $$aMedicine (miscellaneous)$$c2022$$dQ1
000131828 593__ $$aNeurology (clinical)$$c2022$$dQ2
000131828 593__ $$aNeurology$$c2022$$dQ2
000131828 594__ $$a5.6$$b2022
000131828 655_4 $$ainfo:eu-repo/semantics/article$$vinfo:eu-repo/semantics/publishedVersion
000131828 700__ $$aGómez-Ballesteros, Rocío
000131828 700__ $$aBorges, Mónica
000131828 700__ $$aMartín-Martínez, Jesús
000131828 700__ $$aSotoca, Javier
000131828 700__ $$aAlonso, Ana
000131828 700__ $$aCaminero, Ana B.
000131828 700__ $$aBorrega, Laura
000131828 700__ $$aSánchez-Menoyo, José L.
000131828 700__ $$aBarrero-Hernández, Francisco J.
000131828 700__ $$aCalles, Carmen
000131828 700__ $$aBrieva, Luis
000131828 700__ $$aBlasco-Quílez, María R.
000131828 700__ $$aDotor García-Soto, Julio
000131828 700__ $$adel Campo-Amigo, María
000131828 700__ $$aNavarro-Cantó, Laura
000131828 700__ $$aAgüera, Eduardo
000131828 700__ $$0(orcid)0000-0002-1756-5492$$aGarcés-Redondo, Moisés$$uUniversidad de Zaragoza
000131828 700__ $$aCarmona, Olga
000131828 700__ $$aGabaldón-Torres, Laura
000131828 700__ $$aForero, Lucía
000131828 700__ $$aHervás, Mariona
000131828 700__ $$aMauriño, Jorge
000131828 700__ $$aSainz de la Maza, Susana
000131828 7102_ $$11007$$2610$$aUniversidad de Zaragoza$$bDpto. Medicina, Psiqu. y Derm.$$cArea Medicina
000131828 773__ $$g64 (2022), 103969 [7 pp.]$$pMult. scler. relat. disord.$$tMultiple Sclerosis and Related Disorders$$x2211-0348
000131828 8564_ $$s464482$$uhttps://zaguan.unizar.es/record/131828/files/texto_completo.pdf$$yVersión publicada
000131828 8564_ $$s2287679$$uhttps://zaguan.unizar.es/record/131828/files/texto_completo.jpg?subformat=icon$$xicon$$yVersión publicada
000131828 909CO $$ooai:zaguan.unizar.es:131828$$particulos$$pdriver
000131828 951__ $$a2024-03-18-17:10:35
000131828 980__ $$aARTICLE