Saturday, July 13, 2024

New Framework Developed to Assess Quality of Life in ALS Patients

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A new study has introduced an innovative framework to address the inconsistencies in assessing health-related quality of life (HRQoL) for patients with amyotrophic lateral sclerosis (ALS). By incorporating extensive literature reviews and consultative feedback from patients, caregivers, and healthcare professionals, the researchers have developed the Health-related Quality of Life in Amyotrophic Lateral Sclerosis (QuALS) framework. This comprehensive model aims to provide a holistic understanding of HRQoL in ALS, potentially guiding future research and clinical practices.

Study Methodology and Framework Development

The QuALS framework emerged from a meticulous review of existing literature and primary studies assessing HRQoL in ALS. Researchers conducted a systematic search across five electronic databases in April 2022, identifying studies that utilized multi-item patient-reported outcome measures (PROMs) or qualitative methods. The team extracted and iteratively refined HRQoL themes from these studies, culminating in a framework endorsed by stakeholders with lived experiences and clinical experts.

QuALS encompasses three primary domains of HRQoL: physical, psychological, and social functioning. These domains are further divided into seven themes: Activities, Physical Health, Autonomy, Cognition, Feelings and Emotions, Self-identity, and Relationships, which are characterized by 42 subthemes. This structure aims to capture the multifaceted impact of ALS on patients’ lives comprehensively.

Key Findings and Implications

From the 8,220 studies initially identified, 274 were included in the final review. Among these, 111 PROMs were employed to evaluate at least one aspect of HRQoL, while 11 studies utilized qualitative methods. Notably, physical functioning was the most frequently assessed domain, particularly within ALS-specific PROMs, where nearly a quarter focused solely on this aspect. However, none of the reviewed PROMs or qualitative studies addressed all facets of HRQoL as outlined in the QuALS framework.

The QuALS framework’s comprehensive nature offers a valuable resource for researchers and clinicians. By addressing the full spectrum of HRQoL, it facilitates a more nuanced understanding of ALS’s impact and provides a foundation for developing more targeted and effective interventions.

Concrete Inferences for Application

– The QuALS framework can be used to develop more holistic and patient-centered PROMs for ALS.
– Future research should aim to create or adapt PROMs that cover all three domains and seven themes identified in QuALS.
– Clinicians can utilize the QuALS framework to better understand and address the diverse HRQoL needs of ALS patients in clinical practice.
– Policymakers can leverage the comprehensive data from QuALS to inform healthcare policies and resource allocation for ALS care.

By providing a detailed and inclusive model for assessing HRQoL in ALS, the QuALS framework promises to enhance both research and clinical approaches, ultimately improving the quality of life for ALS patients.

Original Article: Neurology. 2024 Jul 23;103(2):e209549. doi: 10.1212/WNL.0000000000209549. Epub 2024 Jun 13. PMID: 38870470 | DOI: 10.1212/WNL.0000000000209549

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