Quality of life in patients with craniocervical dystonia: Italian validation of the “Cervical Dystonia Impact Profile (CDIP-58)” and the “Craniocervical Dystonia Questionnaire (CDQ-24)”

Abstract

Dystonia is a disabling and disfiguring disorder that can often affect many aspects of patients' daily lives, and lower their self-esteem. To date, quality of life (QoL) has been assessed in dystonic patients using generic measures that do not address the specific problems of this diagnostic group. Recently, two disease-specific scales "The Cervical Dystonia Impact Profile (CDIP-58)" and the "Craniocervical Dystonia Questionnaire (CDQ-24)" were validated for measuring QoL in craniocervical dystonia patients. No disease-specific scales for QoL for dystonic patients are currently available in Italian. The aim of our study was to produce and validate the Italian version of the CDIP-58 and CDQ-24. We obtained the Italian version of CDQ-24 and CDIP-58 with a back-translation design. Both scales were applied to a population of 94 craniocervical dystonia patients along with the Short Form 36 health-survey questionnaire (SF-36), both before and 4 weeks after botulinum toxin therapy. A group of 65 controls matched for sex, age and comorbidity underwent the SF-36. Internal consistency was satisfactory for all subscales. Both the CDIP-58 and CDQ-24 showed moderate to high correlations with similar items of the SF-36. Sensitivity to change was confirmed by highly significant improvements in all CDQ-24 subscales and by moderate improvements in three out of eight CDIP-58 subscales and total score. This is the first Italian study on QoL in dystonia patients. We validated the Italian version of two disease-specific questionnaires to evaluate QoL in craniocervical dystonia patients. These scales could be useful for both clinical practice and clinical trials.

Development and validation of a clinical scale for rating the severity of Blepharospasm

“…Because we observed that subjects with total score near the bottom or the top of the scale did not exceed 15% in either scale formulation, we could rule out the possibility of floor or ceiling effects. Our analysis found a partial correlation between both versions of the scale and the JRS, or the quality of life (QoL) scale CDQ‐24 . The scale presented here explores domains that are not considered in the prior scales: estimation of spasm severity is present in the JRS but not in the CDQ‐24, whereas spasm‐associated features are not considered in the JRS but may contribute to QoL assessment by the CDQ‐24.…”

“…Our analysis found a partial correlation between both versions of the scale and the JRS, 11 or the quality of life (QoL) scale CDQ-24. 16,17 The scale presented here explores domains that are not considered in the prior scales: estimation of spasm severity is present in the JRS 11 but not in the CDQ-24, 16,17 whereas spasm-associated features are not considered in the JRS but may contribute to QoL assessment by the CDQ-24. Comparison of total severity scores at baseline and 4 weeks after BoNT treatment highlighted the sensitivity to change of both versions of the scale.…”

The effect of physical therapy in the treatment of patients with cervical dystonia with or without concomitant use of botulinum toxin

“…TWSTRS showed good reliability in all the subscales, with bigger variability depending on the gravity of disease. Disability subscale is more sensitive than the subscales for pain and for severity of the disease as well 4,23 .…”

“…Inter-test reliability was good, but the validity of this scale was not studied. Cervical Dystonia Impact Profile (CDIP-58) measures the 58 health parameters in CD, but it has not been widely used in investigations 4,23 .…”

“…Pain accompanies CD in 75% of patients, and its intensity sometimes correlates with the stage of CD. The disease can have spontaneous recovery, especially in younger patients, but it is usually short-term [1][2][3][4] .…”