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

Abstract

Background 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. Aims 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). Methods 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. Results One hundred sub-categories were identified, grouped into 13 categories and four themes: 'awareness of the transition', 'communication of the transition', 'dealing with symptoms

Construction of a User-Led Resource for People Transitioning to Secondary Progressive Multiple Sclerosis: Results of an International Nominal Group Study

“…In Italy, the selection of the resource "Personalized care" reveals the urgency of coordinated and interdisciplinary care, which becomes even more important as the disease worsens and impacts the personal and social life of the individual (10). Interestingly, in Italy, personalized care plan was the second prioritized need (33% of the online survey participants) in the ManTra online survey which preceded the present study (11), while in Germany, it was left out of the four prioritized needs, possibly reflecting differences in the organization of the healthcare system across the two countries (11).…”

“…In a previous round of the ManTra project (round 1; Figure 1), we identified 33 needs of people converting to SPMS via literature review and a qualitative study [personal semi-structured interviews with recently diagnosed pwSPMS; focus group meetings with pwSPMS' significant others (SOs), neurologists, and other healthcare professionals (HPs)] (10). An online survey with 215 recently diagnosed pwSPMS followed, assessing the characteristics associated with people's awareness of SPMS conversion, the experience of conversion, and the importance and prioritization of the 33 identified needs (11).…”

Secondary Progressive Multiple Sclerosis

“…e77 This multidisciplinary approach provides a holistic view of factors along the patient journey (e.g., diagnosis, disease course and evolution over time, treatment patterns across cohorts, perspectives from the patients, care providers, and physicians, etc.) to identify overarching challenges encountered by all stakeholders involved in the management of MS. 56 , 57 ,e79,e80 It is also imperative for clinicians to improve collaboration and referral pathways while managing patients with SPMS. e80…”

Acceptance-based telephone support around the time of transition to secondary progressive multiple sclerosis: A feasibility randomised controlled trial

“…Those with SPMS who are able to accept or adjust to their diagnosis and disease progression, tended to fare better than those who ignored their increasing difficulties, or restricted and reduced their lives too readily (Meek et al, 2020). Healthy coping strategies and perceived social support in MS adjustment are key (Bassi et al, 2019), and a clear plan to maintain these during transition is needed (Giovannetti et al, 2020). These studies on MS adjustment mirror a unified working model of adjustment to chronic illness as disrupting a person's emotional equilibrium (Moss-Morris, 2013).…”