Emotional well-being and pain could be a greater determinant of quality of life compared to motor severity in cervical dystonia

Abstract

Non-motor symptoms (NMS) occur in patients with cervical dystonia (CD) but with variable frequencies and impact on health-related quality of life (HRQoL). To define non-motor and motor profiles and their respective impact on HRQoL in CD patients using the newly validated Dystonia Non-Motor Symptoms Questionnaire (DNMSQuest). In an observational prospective multicentre case–control study, we enrolled 61 patients with CD and 61 age- and sex-matched healthy controls (HC) comparing demographic data, motor and non-motor symptoms and HRQoL measurements. 95% CD patients reported at least one NMS. Mean total NMS score was significantly higher in CD patients (5.62 ± 3.33) than in HC (1.74 ± 1.52; p < 0.001). Pain, insomnia and stigma were the most prevalent NMS and HRQoL was significantly impaired in CD patients compared to HC. There was strong correlation of NMS burden with HRQoL (CDQ-24: r = 0.72, EQ-5D: r = − 0.59; p < 0.001) in CD patients. Regression analysis between HRQoL and NMS suggested that emotional well-being (standardized beta = − 0.352) and pain (standardized beta = − 0.291) had a major impact on HRQoL while, in contrast motor severity had no significant impact in this model. Most NMS with the exception of pain, stigma and ADL did not correlate with motor severity. NMS are highly prevalent in CD patients and occur independent of age, sex, disease duration, duration of botulinum neurotoxin therapy and socio-economic status. Specific NMS such as emotional well-being and pain have a major impact on HRQoL and are more relevant than motor severity.

Health-Related Quality of Life in Cervical Dystonia Using EQ-5D-5L: A Large Cross-Sectional Study in China

“…In the current study, pain/discomfort was reported by 68.2% of the patients with CD. Inconsistent with our results, pain has also been identified to affect the quality of life in patients with CD in several studies (7)(8)(9)(11)(12)(13). The pain in CD can be relieved by botulinum toxin injection (28).…”

“…In addition, multivariate linear regression analysis showed that EQ-5D-5L health utility scores were associated with disease duration, motor severity, and nonmotor symptoms, including pain, depression, and sleep quality, while EQ VAS scores were only associated with non-motor symptoms, including pain and depression. As with our results, non-motor symptoms have been widely reported to play an important role in the decreased quality of life in isolated dystonia, including CD (12,24,25). Approximately 55∼90% of the patients with CD have been reported to suffer from pain (1,26,27).…”

“…Additionally, they had usually small sample sizes and yielded inconsistent results. For example, motor severity has been reported to correlate with poor quality of life in CD in some studies (5-7), but not in other studies (8)(9)(10)(11)(12)(13).…”

Botulinum neurotoxin in cervical dystonia revisited — recent advances and unanswered questions

“…In a recent publication by Klingelhöfer et al, pain, insomnia and stigma were most prevalent, and emotional well-being and pain had a major impact on quality of life. Most NMS, with the exception of pain, stigma and daily activity, did not correlate with motor severity [29].…”

“…In addition to abnormal head postures, many patients present with so-called non-motor symptoms (NMS) [28][29][30]. It is a matter of debate whether these are direct or indirect symptoms of the disease.…”