Palliative care needed in patients with progressive neurologic diseases

Early recognition and management of emerging palliative care (PC) needs, particularly psychospiritual distress, is crucial for enhancing health-related quality of life (HRQoL) for patients with peripheral neurologic diseases (PNDs), a study by the University of Hong Kong (HKU) has found.  

The cross-sectional study included adult patients with PNDs (PwPNDs) in Hong Kong (n=210; female, 61.9 percent; able to walk without aid, 59.0 percent; required assistance to walk, 26.2 percent; wheelchair-restricted mobility, 14.8 percent). Individuals diagnosed with Parkinson’s disease or multiple sclerosis who were able to communicate in Cantonese were recruited between June 2023 and March 2024 using convenience sampling from regional neurology outpatient clinics and patient support groups, including the Hong Kong Parkinson’s Disease Association and the Hong Kong Neuromuscular Disease Association. [J Pain Symptom Manage 2025;doi:10.1016/j.jpainsymman.2025.03.004]

The Palliative Care Outcome Scale (POS; assessed physical symptoms, patient and family anxiety, spiritual needs, information needs, and practical concerns on a 5-point Likert scale ranging from 0 [not at all] to 4 [overwhelmingly]), Hospital Anxiety and Depression Scale (HADS), and EQ-5D-5L surveys were used to assess the participants’ PC needs, psychological distress and HRQoL, respectively.

The most prevalent PC needs among the participants were related to physical symptoms other than pain (86.2 percent; mean POS, 1.55), followed by psychosocial support needs (84.8 percent; mean POS, 1.97) and spiritual concerns (83.3 percent; mean POS, 1.57). Notably, pain was not the most prevalent symptom (66.7 percent; mean POS, 1.11) that needed PC. Mobility level, anxiety, depressive symptoms, and PC needs were significantly associated with HRQoL among PwPNDs.

“The findings suggest that the PC approach, which originated in cancer populations where pain is a common therapeutic target, may require adaptation for PNDs owing to different illness trajectories and symptomatology,” noted the authors, who further highlighted the need for disease-specific PC measures. “Notably, when compared with patients with advanced cancer, PwPNDs demonstrated a higher level of psychospiritual needs.” [Health Qual Life Outcomes 2008;6:42]

The psychological distress and existential concerns associated with PNDs, which may be comparable to or even more prevalent than those associated with advanced cancer, could possibly be attributed to the relatively fluctuating and unpredictable disease trajectory (periods of recovery interrupted by acute exacerbations) of PNDs. [Palliat Med 2013;27:805-810; J Eval Clin Pract 2021;27:562-570]

Compared with a UK study of patients with advanced Parkinson’s Disease, the Hong Kong study’s participants had higher unmet psychosocial needs, revealing culture-specific differences in PC needs among patients with PNDs. This disparity may partly be attributed to traditional Chinese values, which discourage open emotional expression for fear of burdening their families. “[Therefore], it is crucial for healthcare providers to recognize the impact of cultural norms on emotional expression and family dynamics, and create a safe environment for patients to share their concerns,” noted the authors. The overburdened public healthcare system is another factor limiting the ability of healthcare providers to comprehensively address patients’ PC needs. [Palliat Med 2013;27:722-731; Patient Educ Couns 2018;101:1193-1206]  

“Given the chronic and fluctuating illness trajectory, early recognition and management of emerging PC needs, particularly psychospiritual distress, is crucial for enhancing HRQoL for PwPNDs. [The findings] affirmed the importance of PC services that address not only physical symptoms, but also psychospiritual needs, informational needs, and practical concerns,” the authors concluded.