Titre : | Evaluating changes in quality of life using QoL-NMD in patients with neuromuscular diseases |
Revue : | Annals of physical and rehabilitation medicine, 59S |
Auteurs : | Dany A, Auteur ; Rapin A ; Lavard B ; Novella JL ; Jolly D ; Boyer FC |
Type de document : | Article |
Année de publication : | 2016 |
Pages : | p e60 |
Langues: | Anglais |
Mots-clés : | échelle d'évaluation ; étude observationnelle ; image de soi ; maladie neuromusculaire ; participation sociale ; qualité de vie |
Résumé : |
Abstract no. CO0217
OBJECTIVE: The "quality of life in neuromuscular disease" questionnaire (QoL-NMD) is a new health-related quality of life measurement tool specifically designed for patients with a slowly-progressive neuromuscular disease with motor deficiency. The QoL-NMD is structured into 3 domains: "impact of physical symptoms", "self-perception" and "activities and social participation". Our objective is to estimate conditional minimum detectable changes (cMDCs). The cMDCs help determine if a measure change reflects a change of patient's status over time or a measurement error. MATERIAL/PATIENTS AND METHODS: The QOL-NMD was administered to patients recruited in 8 tertiary hospitals dedicated to NMD. Each QoL-NMD domain was measured by a T score metric i. e. a normal distribution with a mean of 50 and a standard deviation of 10. High values represent good quality of life. Standard errors of measurement were estimated using items response theory. For each QoL-NMD domain we estimated the cMDCs associated with all measure changes. RESULTS: A total of 315 patients were recruited. Estimated cMDCs were generally smallest in the mid-range of all scales (between 9 and 12) and higher on the outer quartiles (up to nearly 17). The lowest mid-range cMDCs were for the domain "activities and social participation" (almost all below 10). DISCUSSION - CONCLUSION: These results provide a clinically useful means of interpreting change for individual patients on the QoLNMD. ThecDMCtables can help clinicians and investigators identify differences for individual patients that are clinically relevant to reflect a status change and motivate a modification of care. |
Pubmed / DOI : | DOI : 10.1016/j.rehab.2016.07.139 |
En ligne : | http://www.ncbi.nlm.nih.gov/pubmed/27676964 |