Unmet needs of patients transitioning to secondary progressive multiple sclerosis: Qualitative findings for a resource development

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (4)

Date: 

Sunday 16 September 2018 - 16:30 to 16:40

Location: 

Carrick 1

All authors in correct order:

Giordano A1, Giovannetti AM2, Pietrolongo E3, Confalonieri P4, Trojano M5, Tortorella C6, Messmer Uccelli M7, De Luca G3, Gitto L8, Torri Clerici V4, Köpke S9, Borreani C10, Heesen C11, Solari A2
1 Foundation IRCCS Neurological Institute C Besta, Unit of Neuroepidemiology/Department of Psychology, University of Turin, Italy
2 Foundation IRCCS Neurological Institute C Besta, Unit of Neuroepidemiology, Italy
3 G d’Annunzio University of Chieti-Pescara, Department of Neuroscience, Imaging and Clinical Sciences, Italy
4 Foundation IRCCS Neurological Institute C Besta, Unit of Neuroimmunology and Neuromuscular Diseases, Italy
5 Aldo Moro University of Bari, Department of Basic Medical Sciences, Neuroscience and Sense Organs, Italy
6 San Camillo-Forlanini Hospital, Department of Neurosciences, Italy
7 Italian Multiple Sclerosis Society and Research Foundation, Italy
8 Università degli Studi di Roma 'Tor Vergata', CEIS Economic Evaluation and HTA, Italy
9 University of Lübeck, Institute of Social Medicine and Epidemiology, Italy
10 Foundation IRCCS Istituto Nazionale per la Cura dei Tumori, Unit of Clinical Psychology, Italy
11 University Medical Center Hamburg-Eppendorf, Department of Neurology, Germany
Presenting author and contact person

Presenting author:

Andrea Giordano

Contact person:

Andrea Giordano
Abstract text
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.

Relevance to patients and consumers: 

Despite the complexity and potential impact of the transition from relapsing-remitting to secondary progressive multiple sclerosis (MS), no targeted interventions to promote patients' wellbeing are available. Here we describe a project which aims 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. In the subsequent phases our findings will be combined with those of the ongoing German qualitative study.