Palliative Care Need and Quality of Life Mediated by Psychological Distress in Neurologic Diseases

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY Journal of pain and symptom management Pub Date : 2025-03-11 DOI:10.1016/j.jpainsymman.2025.03.004

Lily Man Lee Chan BN(Hons), RN , Edmond Pui Hang Choi PhD, BNurs, RN, FAAN , Wendy Wing Tak Lam PhD, MSc, BSc, RN, FFPH , Koon Ho Chan MBBS, MD, PhD, MRCP, FRCP, FHKCP, FHKAM , Shirley Yin Yu Pang BSc, MBBS, FHKCP, FHKAM, FHKCP , Jojo Yan Yan Kwok PhD, MPH, BN(Hons), RN, FAAN

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Abstract

Context

Patients with progressive neurologic diseases (PNDs) face a prolonged and fluctuating course of illness marked by increasing disability and a range of nonmotor symptoms. However, the impacts of nonmotor symptoms and unmet care needs remain underexplored. Palliative care needs arise from the multifaceted sufferings associated with PNDs, encompassing not only physical pain but also psychological, social, and spiritual distress. Despite recommendations for early palliative care for PNDs to address these multidimensional sufferings, access to such supportive care is often restricted to advanced stages of the disease.

Objectives

This cross-sectional study aimed to examine palliative care needs, psychological distress, health-related quality of life, and the mediating effects of psychological distress on palliative care needs and health-related quality of life among patients with PNDs.

Methods

A total of 210 patients with PNDs (Parkinson's disease or multiple sclerosis) were recruited using convenience sampling from regional neurology outpatient clinics and patient support groups in Hong Kong. Participants responded to Palliative Care Outcome Scale (POS), Hospital Anxiety and Depression Scale (HADS), and EQ-5D-5L surveys.

Results

Most respondents (59.0%) walked without aid, whereas 26.2% required assistance and 14.8% were wheelchair-restricted. The most prevalent palliative care needs were physical symptoms other than pain, psychosocial support, and spiritual burden. A significant portion of participants exhibited possible anxiety (41.1%) or depression (48.6%). Hierarchical regression analysis indicated that mobility, palliative care needs, anxiety, and depression were significantly associated with the health-related quality of life. Anxiety and depression partially mediated the relationship between palliative care needs and quality of life.

Conclusion

Given the chronic, fluctuating illness trajectory, early recognition and management of emerging palliative care needs, particularly psychospiritual distress, is crucial for enhancing health-related quality of life for patients with PNDs.

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神经系统疾病患者心理困扰介导的姑息治疗需求和生活质量

背景：进展性神经系统疾病 (PND) 患者的病程漫长且起伏不定，其特点是残疾程度不断加重，并伴有一系列非运动症状。然而，人们对非运动症状的影响和未得到满足的护理需求仍缺乏深入研究。姑息关怀需求源于与 PND 相关的多方面痛苦，不仅包括身体疼痛，还包括心理、社会和精神痛苦。尽管建议对 PND 进行早期姑息治疗，以解决这些多方面的痛苦，但获得此类支持性护理的机会往往仅限于疾病的晚期阶段：本横断面研究旨在探讨帕金森氏症患者的姑息关怀需求、心理困扰、健康相关生活质量，以及心理困扰对姑息关怀需求和健康相关生活质量的中介作用。方法：研究人员从香港地区的神经科门诊和患者支持团体中采用便利抽样的方式招募了 210 名帕金森氏症（帕金森氏症或多发性硬化症）患者。参与者对姑息治疗结果量表（POS）、医院焦虑抑郁量表（HADS）和EQ-5D-5L调查做出了回答：结果：大多数受访者（59.0%）无需辅助即可行走，26.2%的受访者需要辅助，14.8%的受访者需要坐轮椅。最普遍的姑息关怀需求是疼痛以外的身体症状、社会心理支持和精神负担。相当一部分参与者可能表现出焦虑（41.1%）或抑郁（48.6%）。层次回归分析表明，行动能力、姑息治疗需求、焦虑和抑郁与健康相关的生活质量有显著相关性。焦虑和抑郁在一定程度上调节了姑息治疗需求与生活质量之间的关系：鉴于慢性、波动性的疾病轨迹，早期识别和管理新出现的姑息治疗需求，尤其是精神心理困扰，对于提高 PND 患者的健康相关生活质量至关重要。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of pain and symptom management 医学-临床神经学

CiteScore

8.90

自引率

6.40%

发文量

821

审稿时长

26 days

期刊介绍： The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.

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