Article type
Year
Abstract
Background and Aims: About 50% of relapsing multiple sclerosis (MS) patients convert to secondary progressive (SPMS) 15 years after clinical onset. Despite the complexity and potential impact of this transition, no targeted interventions to promote patients' wellbeing are available. Managing the Transition to SPMS (ManTra) aims to develop and assess the efficacy of a user-led resource for newly diagnosed SPMS patients. Here, we describe a key project phase: assessment of the experiences and needs of SPMS transition.
Methods: We performed: personal semi-structured interviews with 15 recently diagnosed SPMS patients; three focus groups (with patient significant others, neurologists, and other MS health professionals [HPs] across Italy). Interviews and focus groups were audio-recorded, transcribed verbatim, and analysed (framework method).
Results: Data analysis revealed 62 sub-categories, grouped into 10 categories and four themes: ‘Awareness of the transition’; ‘Transition’; ‘Reaction to disease progression’; ‘Resources’. All stakeholders agreed on the following unmet needs: management of SPMS at the MS Centre; psychological support; HP training; communication/information; job/welfare.
Conclusions: We observed a general lack of communication of the transition by neurologists and low awareness by SPMS patients who massively used defensive mechanisms. All stakeholders unanimously asked for improved management at the MS center, provision of psychological support, specific HP training, access to more information, dedicated worker protection policies and job outplacement in this disease phase. Our findings will be combined with those of the ongoing German qualitative study. An online survey (>400 recently diagnosed Italian and German SPMS patients) will follow to substantiate needs on a large, independent sample.
Patient or healthcare consumer involvement: Managing the Transition to SPMS (ManTra) is a mixed methodology project to develop and test a user-led resource for newly diagnosed patients with SPMS. In this phase, we conducted a qualitative study involving all the key stakeholders (patients, carers, health professionals) in order to assess patients needs during the SPMS transition.
Methods: We performed: personal semi-structured interviews with 15 recently diagnosed SPMS patients; three focus groups (with patient significant others, neurologists, and other MS health professionals [HPs] across Italy). Interviews and focus groups were audio-recorded, transcribed verbatim, and analysed (framework method).
Results: Data analysis revealed 62 sub-categories, grouped into 10 categories and four themes: ‘Awareness of the transition’; ‘Transition’; ‘Reaction to disease progression’; ‘Resources’. All stakeholders agreed on the following unmet needs: management of SPMS at the MS Centre; psychological support; HP training; communication/information; job/welfare.
Conclusions: We observed a general lack of communication of the transition by neurologists and low awareness by SPMS patients who massively used defensive mechanisms. All stakeholders unanimously asked for improved management at the MS center, provision of psychological support, specific HP training, access to more information, dedicated worker protection policies and job outplacement in this disease phase. Our findings will be combined with those of the ongoing German qualitative study. An online survey (>400 recently diagnosed Italian and German SPMS patients) will follow to substantiate needs on a large, independent sample.
Patient or healthcare consumer involvement: Managing the Transition to SPMS (ManTra) is a mixed methodology project to develop and test a user-led resource for newly diagnosed patients with SPMS. In this phase, we conducted a qualitative study involving all the key stakeholders (patients, carers, health professionals) in order to assess patients needs during the SPMS transition.