What is it about?

This review examined how patients with neuromuscular diseases (NMDs) report their health and quality of life using patient surveys called Patient-Reported Outcome Measures (PROMs). PROMs are questionnaires that help patients describe their symptoms, daily functioning, and well-being without a doctor's input. This scoping review aimed to compile all the available PROMs used for adults and children with NMDs. The researchers examined 247 studies and identified 190 different PROMs. They found that most PROMs focused on specific diseases rather than being general. The physical functioning aspect was the most commonly assessed area. However, many of these surveys only partially captured all the essential aspects of patients' experiences, like social participation or the impact of treatment. The study highlighted the need for more research on specific areas, especially the ability of PROMs to measure changes in health over time and interpret results meaningfully. The findings will help healthcare professionals choose the best tools to monitor patient health and involve patients in treatment decisions.

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Why is it important?

This review is unique and important because it carefully examines patient surveys that help people with neuromuscular diseases (NMDs) share their health experiences. By looking at 190 different surveys, it reveals gaps in how well these surveys measure important aspects like social participation and the impact of treatment. This insight helps healthcare professionals understand their patients' needs better and choose the most accurate surveys for better, more personalized care. It ensures that patient voices are heard clearly so that treatment decisions can be tailored to improve their quality of life.

Perspectives

From a personal perspective, this review resonates because it emphasizes putting patients at the forefront of care. The comprehensive analysis of surveys (PROMs) provides valuable insight into the daily challenges individuals face with neuromuscular diseases. By understanding their symptoms, social participation, and treatment impact through their own words, healthcare professionals can connect more deeply with patients’ experiences. This review’s recognition of gaps in existing surveys is crucial: it ensures that future research and clinical practice focus on what truly matters to those living with these conditions, ultimately leading to more compassionate, effective care. The study serves as a meaningful step toward bridging the gap between clinical understanding and the lived realities of patients.

Nicole Voet
Radboud Universiteit

Read the Original

This page is a summary of: Patient-Reported Outcome Measures in Neuromuscular Diseases: A Scoping Review, Journal of Neuromuscular Diseases, April 2024, IOS Press,
DOI: 10.3233/jnd-240003.
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