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

Werle, Roberta Weber; Takeda, Sibele Yoko Mattozo; Zonta, Marise Bueno; Guimarães, Ana Tereza Bittencourt; Teive, Hélio Afonso Ghizoni

doi:10.1590/0004-282X20140044

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Articles • Arq. Neuro-Psiquiatr. 72 (6) • June 2014 • https://doi.org/10.1590/0004-282X20140044 copy

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

Os aspectos físicos, sociais e emocionais são os mais afetados na qualidade de vida dos pacientes com distonia cervical

Authorship SCIMAGO INSTITUTIONS RANKINGS

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.

dystonia; quality of life; torticollis; neck pain

Clinical Presentation	Frequency
Clinical Presentation	Absolute	Relative
1 Type
Torticollis	20	28.5%
Laterocollis	6	8.5%
Retrocollis	2	2.8%
Anterocollis	1	1.4%
2 Types
Torticollis + laterocollis	25	35.7%
Torticollis + retrocollis	7	10%
Anterocollis + laterocollis	3	4.2%
Torticollis + anterocollis	3	4.2%
3 Types
Torticollis + retrocollis + laterocollis	3	4.2%

CDQ-24 – Subscales	Items	Frequency
CDQ-24 – Subscales	Items	Absolute	Relative
Stigma	Avoid places with many people	44	62.9 %
	Felt uneasy in public	51	72.9%
	Need to conceal the disease	35	50%
	Concern with the reaction of other people	36	51.4%
	Unsure or tense with new people	44	62.9%
	Felt not to look so good	36	51.4%

Emotional wellbeing	Felt depressed	33	47.1%
	Felt annoyed or bitter	33	47.1%
	Felt sad or on the verge of tears	31	44.3%

Pain	Prevented from falling asleep by pain or a pulling sensation in the neck	17	24.3%
	Pain/a burning sensation in the face, head or neck region	43	61.4%
	Felt hindered by pain/a burning sensation in the face, head or neck region	48	68.6%

Activities of daily living	Difficulty to do pleasant activities	45	64.3%
	Difficulty to keep up with the demands of work or personal life	52	74.3%
	Difficulty as a motorist or pedestrian	40	57.1%

Social/familiy life	Felt isolated or lonely because of the dystonia	23	32.9%
Social/familiy life	Problems with close friends or family due to the dystonia	14	20%

Tricks	Frequency
Tricks	Absolute	Relative
Complete relief	45	64.3%
Partial relief	13	18.6%
Little or no benefit from tricks	12	17.1%

	Disability Level	Frequency
	Disability Level	Absolute	Relative
Work	Normal work expectations with satisfactory performance at usual level of occupation but some interference by torticollis.	21	30%
	Unable to engage in voluntary or gainfulemployment; still able to perform some domestic responsibilities satisfactorily.	16	22.9%

Activities of daily living	Activities unlimited but some interference by torticollis.	27	38.6%
	Most activities unlimited, selected activities very difficult and hampered but still possible using simple tricks.	10	14.3%

Driving	No difficulty.	49	70%

Reading	Unlimited ability to read in normal seated position but bothered by torticollis	25	35.7%
	Unlimited ability to read in normal seated position but requires use of tricks to control torticollis.	26	37.1%

Watching television	Unlimited ability to watch television in normal seated position but requires use of tricks to control torticollis.	19	27.1%

Activities Outside the Home	Unlimited activities but bothered by torticollis.	25	35.7%

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[1] Correspondence
: Roberta Weber Werle; Rua Dr Bozano, 711/203; 97015-001 Santa Maria RS, Brasil; E-mail: robertawwerle@hotmail.com