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)”

2014 ◽  
Vol 35 (7) ◽  
pp. 1053-1058 ◽  
Author(s):  
Margherita Fabbri ◽  
Maria Superbo ◽  
Giovanni Defazio ◽  
Cesa Lorella Maria Scaglione ◽  
Elena Antelmi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cervical Dystonia ◽  
Italian Validation ◽  
Craniocervical Dystonia

scholarly journals The physical, social and emotional aspects are the most affected in the quality of life of the patients with cervical dystonia

2014 ◽  
Vol 72 (6) ◽  
pp. 405-410 ◽  
Author(s):  
Roberta Weber Werle ◽  
Sibele Yoko Mattozo Takeda ◽  
Marise Bueno Zonta ◽  
Ana Tereza Bittencourt Guimarães ◽  
Hélio Afonso Ghizoni Teive
Keyword(s):  
Quality Of Life ◽  
Cervical Dystonia ◽  
Rating Scale ◽  
Motor Impairment ◽  
Residual Effect ◽  
Spasmodic Torticollis ◽  
Social And Emotional ◽  
Emotional Aspects ◽  
Craniocervical Dystonia

Objective : Describe the functional, clinical and quality of life (QoL) profiles in patients with cervical dystonia (CD) with residual effect or without effect of botulinum toxin (BTX), as well as verify the existence of correlation between the level of motor impairment, pain and QoL. Method : Seventy patients were assessed through the Craniocervical dystonia questionnaire-24 (CDQ-24) and the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS). Results : The greater the disability, pain and severity of dystonia, the worse the QoL (p<0.0001). Greater severity relates to greater disability (p<0.0001). Pain was present in 84% of the sample, being source of disability in 41%. The most frequent complaints were: difficulty in keeping up with professional and personal demands (74.3%), feeling uneasy in public (72.9%), hindered by pain (68.6%), depressed, annoyed or bitter (47.1%), lonely or isolated (32.9%). Conclusion : The physical, social and emotional aspects are the most affected in the QoL of these patients.

scholarly journals Improvement in Quality of Life with OnabotulinumtoxinA for Cervical Dystonia: POSTURe

2020 ◽  
pp. 1-29
Author(s):  
Marc Petitclerc ◽  
Martin Cloutier ◽  
Pierre Naud ◽  
Melanie Langlois ◽  
Meetu Bhogal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cervical Dystonia

scholarly journals Quality of life in individuals with cervical dystonia before botulinum toxin injection in a Brazilian tertiary care hospital

2011 ◽  
Vol 69 (6) ◽  
pp. 900-904 ◽  
Author(s):  
Mariana Ribeiro Queiroz ◽  
Hsin Fen Chien ◽  
Egberto Reis Barbosa
Keyword(s):  
Quality Of Life ◽  
Botulinum Toxin ◽  
Cervical Dystonia ◽  
Rating Scale ◽  
Short Form ◽  
Tertiary Care ◽  
Residual Effect ◽  
Care Hospital ◽  
Sf 36

OBJECTIVE: The purpose of this study was to evaluate quality of life (QoL) in a Brazilian population of individuals with cervical dystonia (CD) without effect of botulinum toxin (BTx) or with only residual effect of BTx, and identify possible physical and social aspects that affect their QoL. METHOD: Sixty five out of sixty seven consecutive patients with CD were assessed with two instruments: Short-form Health Survey with 36 questions (SF-36) and Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS). RESULTS: Severity of CD (TWSTRS) correlated moderately with two SF-36 subscale: role-physical (r= -0.42) and body pain (r= -0.43). Women also scored worse in two subscale of SF-36: vitality (p<0.05) and mental-health (p<0.005). CONCLUSION: Severity of CD and gender (female) were the main factors related to a worse QoL perception. These findings may help health professionals to predict which characteristics could lead to worse QoL, and therefore, better target their interventions to lessen the burden caused by CD.

scholarly journals Fatigue, Sleep Disturbances, and Their Influence on Quality of Life in Cervical Dystonia Patients

2016 ◽  
Vol 4 (4) ◽  
pp. 517-523 ◽  
Author(s):  
Marenka Smit ◽  
Arwen S. J. Kamphuis ◽  
Anna L. Bartels ◽  
Vladimir Han ◽  
Roy E. Stewart ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cervical Dystonia ◽  
Sleep Disturbances

scholarly journals Patient perspectives on the therapeutic profile of botulinum neurotoxin type A in cervical dystonia

2020 ◽  
Author(s):  
Cynthia Comella ◽  
Joaquim J. Ferreira ◽  
Emilie Pain ◽  
Marion Azoulai ◽  
Savary Om
Keyword(s):  
Quality Of Life ◽  
Cervical Dystonia ◽  
Botulinum Neurotoxin ◽  
Type A ◽  
Peak Effect ◽  
Botulinum Neurotoxin Type A ◽  
The Mean ◽  
The Impact ◽  
Therapeutic Profile

Abstract Background Botulinum neurotoxin type A (BoNT-A) is an effective pharmacological treatment for the management of cervical dystonia (CD) that requires repeated administration at variable intervals. We explored patient perceptions of the impact of CD and the waning of BoNT-A therapeutic effects. Methods An internet-based survey was conducted through Carenity, a global online patient community, from May to September 2019. Eligible respondents were adults with CD who had ≥ 2 previous BoNT-A injections. Results 209 respondents (81% females; mean age of 49.7 years) met the screening criteria. The mean BoNT-A injection frequency was 3.9 injections/year. The mean reported onset of BoNT-A therapeutic effect was 11.7 days and the time to peak effect was 4.5 weeks. Symptom re-emergence between injections was common (88%); the time from injection to symptom re-emergence was 73.6 days (~ 10.5 weeks). Treatment was not reported to completely abolish symptoms, even at peak effect. However, symptom severity was rated (0 = no symptoms; 10 = very strong symptoms) as lowest at the peak of treatment effects (mean scores ~ 3/10), increasing as the effects of treatment start waning (~ 5.5/10) and was strongest one day before the next session (~ 7–8/10). The impact of CD on quality of life followed the same ‘rollercoaster’ pattern. Conclusions This survey highlights the burden of CD symptoms, even in patients undergoing regular treatment. Symptom re-emergence is common and has significant impact on daily activities and quality of life. Greater awareness of the therapeutic profile of BoNT-A treatment should lead to better informed therapeutic discussions and planning.

scholarly journals P.014 OnabotulinumtoxinA-treated cervical dystonia patients report improvements in health-related quality of life in a prospective, observational study: POSTURe

2019 ◽  
Vol 46 (s1) ◽  
pp. S17
Author(s):  
M Petitclerc ◽  
M Cloutier ◽  
M Bhogal ◽  
G Davidovic
Keyword(s):  
Quality Of Life ◽  
Observational Study ◽  
Cervical Dystonia ◽  
Prospective Observational Study ◽  
Work Productivity ◽  
Final Visit ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Background: The clinical benefit of onabotulinumtoxinA in cervical dystonia (CD) is proven, but its impact on health-related quality of life (HRQoL) is largely unknown. Methods: Multicentre, prospective, observational study (NCT01655862) of CD patients treated with onabotulinumtoxinA at physician discretion (maximum 9 treatments). Patient-reported HRQoL outcomes and work productivity were collected at baseline, 4- or 8-weeks post-treatment, and final visit (prior to 9th treatment). OnabotulinumtoxinA utilization was assessed. Results: 61 patients received ≥1 treatment; 74.1% completed all treatments. Average total dose/treatment was 186.9U. The splenius capitis was most frequently treated (100% patients). Average pain numeric rating scale score was significantly improved at final visit (2.1) versus baseline (4.6; p&lt;0.001) as were CD impact profile questionnaire-58 scores across all subscales (head/neck symptoms, pain/discomfort, sleep, upper limb activities, walking, annoyance, mood, psychosocial functioning; all p&lt;0.001). Fewer patients (16.0%) reported loss of work productivity at final visit versus baseline (48.4%). 121 AEs were reported by 67.2% patients. 62 AEs in 44.3% patients were treatment-related, the most common being neck pain (18%). One serious AE (not treatment-related) was reported by 1 patient. No new safety signals were identified. Conclusions: Long-term use of onabotulinumtoxinA is a safe, effective treatment for CD, improving HRQoL and work productivity.

scholarly journals Trust the Patient Not the Doctor: The Determinants of Quality of Life in Cervical Dystonia

2020 ◽  
Vol 11 ◽  
Author(s):  
Ihedinachi Ndukwe ◽  
Sean O'Riordan ◽  
Cathal B. Walsh ◽  
Michael Hutchinson
Keyword(s):  
Quality Of Life ◽  
Cervical Dystonia
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