Revisiting the meaning and the source of health-related constructs and their applications in neurodisability

Doctors work hard to make patients feel better by reducing their symptoms, help them achieve more, avoid any harm from treatments, and improving their overall well-being and quality of life. To understand how our patients are really feeling, we listen to them talk about their own experiences and sense of satisfaction and/or dissatisfaction with them. This helps us understand what is most important to them.

We know that not everyone feels the same way about their life, so we ask the patients directly about their feelings and health. This is called patient-reported outcomes. It means patients tell us how they feel about their health without anyone else interpreting their answers. For children who have difficulty communicating, parents and caregivers can provide important information based on their observations. However, we recognize that this perspective is different from the child's own feelings.

Patient-reported outcome measures help us understand patients' symptoms, how they are performing daily activities, their overall health, and how they progress over time. This review aims to clarify three main points: (1) What these measures are about. (2) What health issues we are exploring. (3) Who provides the information – the patients themselves or someone else. This is important because sometimes similar but different health issues can get confused, affecting how we understand treatments and make decisions about patient care.

We discuss how to ensure we are addressing the correct health issues, the confusion that can happen if we mix up terms, and how understanding these ideas helps us improve health care, especially for people with brain-related disabilities. We hope to show that clear research questions, good planning of what we want to find out, and understanding the terms we use can lead to better research and findings. It is important for doctors and researchers to be clear about what questions they are trying to answer when they use any health measure or get information from patients.