Conversion to secondary progressive multiple sclerosis: Multistakeholder experiences and needs in Italy.

Ambra Mara Giovannetti,Insa Schiffmann,Anna Barabasch,Alessandra Solari,Andrea Giordano,Christoph Heesen,Erika Pietrolongo,Claudia Borreani,Luigi Lavorgna

doi:10.1371/journal.pone.0228587

Abstract

Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS. Managing the Transition to SPMS (ManTra) is a mixed methods project conducted in Italy and Germany aimed to set up a user-led resource to empower and improve the quality of life of newly diagnosed SPMS patients. To assess the experiences and the needs of Italian people who recently converted to SPMS, patient significant others (SOs), neurologists and other health professionals (HPs). We conducted 15 personal semistructured interviews (PSIs) with SPMS patients who transitioned up to five years, and three focus group meetings (FGMs), one of SPMS SOs, one of neurologists, and one of other HPs. Participants were purposely selected from the three geographic areas of Italy, and varied in terms of gender, education and (for patients) disease severity. PSIs and FGMs were audiorecorded, transcribed and analyzed by two researchers using the framework analysis. One hundred sub-categories were identified, grouped into 13 categories and four themes: 'awareness of the transition', 'communication of the transition', 'dealing with symptoms worsening', and 'needs'. The major unmet needs were collected in four dimensions 'organization and management; 'empowerment training'; 'information'; and 'policies'. Two are the main findings: first, the widespread lack of awareness around the transition; second, the need to improve the quality of the care pathway in the Italian context. It was particularly stressed the need for a holistic and multidisciplinary approach (with patients and SOs as members of the team), the development of an ad hoc plan of follow up visits with easy access to MS specialists' consultation/treatment; specialized training for each stakeholders; more information on SPMS, daily management and changes at policy level.

Highlights

Multiple sclerosis (MS) is the most common cause of non-traumatic disability in young adults, with over 2.5 million sufferers worldwide, mainly women [1]
Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS
Managing the Transition to SPMS (ManTra) is a mixed methods project conducted in Italy and Germany aimed to set up a user-led resource to empower and improve the quality of life of newly diagnosed SPMS patients

Summary

Introduction

Multiple sclerosis (MS) is the most common cause of non-traumatic disability in young adults, with over 2.5 million sufferers worldwide, mainly women [1]. SPMS is responsible for the majority of the social and economic costs associated with MS, and few partially effective disease-modifying treatments are currently available for this disease form [3]. Around 2–3% RRMS patients per year convert to SPMS [2], and 10–15 years after clinical onset half of the patients have developed SPMS in natural history studies of untreated cohorts [2, 4]. SPMS is diagnosed retrospectively after a period of diagnostic uncertainty that may last for several years, and neither imaging criteria nor biomarkers are available to distinguish RRMS from SPMS [5]. Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS.

Results

Discussion

Conclusion