letter to the editor about a published article DOI: 10.2196/mhealth.8458

Vollständiger Abstract

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<h4>Background</h4>Progressive neurological diseases (PNDs) such as Parkinson disease and multiple sclerosis cause profound motor and nonmotor symptom burdens that significantly impair health-related quality of life. Beyond physical challenges, patients face profound psychospiritual distress driven by prognostic uncertainty, loss of autonomy, and existential concerns. While palliative care can address these multidimensional needs, it remains underused in neurological populations, where conventional care predominantly focuses on motor symptom management.<h4>Objective</h4>This study aims to evaluate the effects and acceptability of a nurse-led, acceptance and commitment-based palliative program on psychological distress, psychospiritual well-being, and related health outcomes among individuals living with PNDs.<h4>Methods</h4>This is a 2-arm, parallel-group randomized controlled trial using an explanatory sequential mixed methods design. A total of 138 participants with PNDs will be recruited and randomized 1:1 to either the intervention group (n=69) or a befriending control group (n=69). The intervention consists of five 60- to 90-minute individual sessions delivered over 3 months by trained nurses integrating acceptance and commitment therapy-based strategies (eg, mindfulness, cognitive defusion, and value-guided action) with supportive-expressive approaches. The control group receives five 30- to 60-minute active befriending sessions. The primary outcome is psychological distress, assessed via the Hospital Anxiety and Depression Scale. Secondary outcomes include spiritual well-being, meaning in life, psychological flexibility, illness perception, palliative care needs, health-related quality of life, and death anxiety. Assessments will be conducted at baseline (T0), 1 week after the intervention (T1), and 3 months after the intervention (T2). Quantitative data will be analyzed using linear mixed-effects models under the intention-to-treat principle. Following the intervention, a purposive subsample will undergo semistructured qualitative interviews to explore intervention acceptability and participant experiences.<h4>Results</h4>This trial obtained ethics approval from the Institutional Review Board of the University of Hong Kong and was funded by the Nethersole Institute of Continuing Holistic Health Education research grant 2022-2023 and the Health and Medical Research Fund (2022), Health Bureau. Recruitment commenced in September 2023. As of manuscript submission, 132 participants have been enrolled. Data analysis has not yet commenced. The results are expected to be published in late 2026.<h4>Conclusions</h4>This study will provide empirical evidence regarding the effectiveness and acceptability of a nurse-led, acceptance and commitment-based palliative program tailored to the complex psychospiritual trajectories of patients with PNDs. If effective, this trial will offer a scalable model for integrating structured psychotherapeutic interventions within neurology, palliative care, and community nursing practices.

Abstract: PubMed · Datensatz