Listening to the neurological teams for multiple sclerosis: the SMART project

Abstract

Objective Aim of the research was to define the quality of life of Italian neurologists and nurses' professional caring for multiple sclerosis, to understand their living the clinical practice and identify possible signals of compassion fatigue. Material and methods One hundred five neurologists and nurses from 30 Italian multiple sclerosis centres were involved in an online quali-quantitative survey on the organization of care, combined with the Satisfaction and Compassion Fatigue Test and a collection of narratives. Descriptive statistics of the quantitative data were integrated with the results obtained by the narrative medicine methods of analysis. Results Most of the practitioners were neurologists, 46 average years old, 69% women, 43% part time dedicated to multiple sclerosis. An increased number of patients in the last 3 years were referred in 29 centres. Differences were found between neurologists and nurses. Physicians showed higher risks of burnout, reporting intensive working paces, lack of medical personnel, and anxiety caused by the precarious employment conditions. Nurses appeared more satisfied, although the reference to the lack of spaces, and the cross professional roles risk of compassion fatigue. Both positive and negative relationships of care were depicted as influencing the professional quality of life. Conclusion The interviewed neurological teams need to limit the risk of compassion fatigue, which appeared from the first years of the career. The prevalence of the risk among neurologists suggests more awareness among scientific societies and health care managers on the risk for this category, as first step to prevent it.

Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives

“…In particular, an Italian interview-based study of 105 HCPs and nurses showed that compassion fatigue and burnout were common due to intensive working practices, under-resourcing of medical personnel, and anxiety caused by employment conditions. 32 …”

“…Nevertheless, determining elements of optimal communication between HCPs and PwMS about disease progression is challenging and no consensus exists. 19 , 29 , 32 , 36 The studies reviewed in this paper suggest that communication on disease progression with PwMS need to be delivered with sensitivity, at an appropriate time, and personalized to each patient’s disease, treatments, experiences, and understanding.…”

“…In particular, an Italian interviewbased study of 105 HCPs and nurses showed that compassion fatigue and burnout were common due to intensive working practices, under-resourcing of medical personnel, and anxiety caused by employment conditions. 32 The importance of sensitive communication with patients transitioning from RRMS to SPMS was highlighted in a qualitative study involving PwMS (n=9) and specialist MS HCPs (n=7) in the UK. 33 The transition to SPMS came as a shock to some PwMS.…”

“…16 In addition, Methley et al concluded that continuity of care and patient-centered care (ie, HCPs working collaboratively with patients to support them in developing the confidence, knowledge, and skills to effectively manage their health and healthcare and make informed decisions 34 ) are pivotal to positive healthcare experiences for both PwMS and professionals. 35 Nevertheless, determining elements of optimal communication between HCPs and PwMS about disease progression is challenging and no consensus exists.- 19,29,32,36 The studies reviewed in this paper suggest that communication on disease progression with PwMS need to be delivered with sensitivity, at an appropriate time, and personalized to each patient's disease, treatments, experiences, and understanding.…”

Job satisfaction among physicians and nurses involved in the management of multiple sclerosis: the role of happiness and meaning at work

“…Long-term dedication can engender a sense of frustration and helplessness as patients’ illness progresses. Particularly, the constant exposure to patients’ suffering and distress, limited treatment effectiveness, no available cure, and working conditions often characterized by excessive workload, poor work autonomy, and inadequate staff can undermine health professionals’ daily work enjoyment and ultimately their job satisfaction [ 2 ].…”