The founder of Strategic Advocacy Solutions LLC discussed the critical role of psychosocial support throughout various stages of neuromuscular diseases, emphasizing the impact of transitions on patients' emotional well-being. [WATCH TIME: 5 minutes]
WATCH TIME: 5 minutes
“I talked about how we can engage the entire healthcare team in supporting patients during particularly vulnerable transitions and their disease. I also talked about the transition to adulthood for young patients with neuromuscular disease, and how that's a particularly vulnerable time in their disease physically and psychologically.”
Recent research in the field of neuromuscular diseases shows that patients are often diagnosed later and also usually do not have sufficient information about their condition to be proactive in their management, leading to social burden.1 Based on a clinical viewpoint, the rarity of some neuromuscular diseases may also lead to unfamiliarity in the medical staff and caregivers. In addition, this can cause an absence of consensus in disease assessment, treatment, and management. Therefore, innovations developed from a holistic perspective are needed in order to address patients’ and physicians’ unmet needs.
Recently Jodi Wolff, PhD, MSSW, the founder of Strategic Advocacy Solutions LLC, presented on how the health care team can support patients at critical junctures in their disease course, at the 2023 American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) meeting, held November 1-4, in Phoenix, Arizona.2 In the lecture, Wolff talked about the different stages of the disease where patients may experience challenges, including at the time of diagnosis, loss of a key function, increased medical intervention, transition to adulthood, and palliative care.
In addition, she talked about research related to coping, grief and loss, anxiety and depression, social isolation, and social support and systems. Wollf also noted the importance of addressing this topic because clinicians and their healthcare teams could potentially reduce the medical trauma related to neuromuscular diseases among patients and potentially help them feel more supported and understood after an appointment.2
At the meeting, Wolff sat down in an interview with NeurologyLive® to further discuss how healthcare teams can better address the emotional crises that patients with neuromuscular diseases experience during critical transitions. Additionally, Wolff shared the key needs as expressed by patients with neuromuscular disease based on a survey she conducted and how clinical settings can adapt to meet the patients’ needs effectively. She also explained the ways patient advocacy groups and community connections can enhance the overall support system for patients who are facing challenges while living with their disease.