Translation, cultural adaptation and validation into portuguese (Brazil) in Systemic Sclerosis Questionnaire (SySQ)

Machado, Roberta Ismael Lacerda; Souto, Lais Medeiros; Freire, Eutilia Andrade Medeiros

doi:10.1016/j.rbr.2014.03.003

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Revista Brasileira de Reumatologia

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Original Articles • Rev. Bras. Reumatol. 54 (2) • Mar-Apr 2014 • https://doi.org/10.1016/j.rbr.2014.03.003 copy

Translation, cultural adaptation and validation into portuguese (Brazil) in Systemic Sclerosis Questionnaire (SySQ)

Authorship SCIMAGO INSTITUTIONS RANKINGS

Introduction:

Systemic sclerosis (SSc) is a multisystem disease, autoimmune disorder characterized by a fibroblastic disfunction, with significant impact on quality of life (QoL), measured by instruments or questionnaires that usually were formulated in other languages and in different cultural contexts.

Objective:

Translate into Brazilian Portuguese, cross cultural adaptation and assess the reliability and validity of the Systemic Sclerosis Questionnaire (SySQ).

Methodology:

Translation and adaptation: into Portuguese and cross-cultural adaptation was performed in accordance with studies on questionnaire translation methodology into other languages. Reliability: it was analyzed using three interviews with different interviewers, two on the same day (interobserver) and the third within 14 days of the first assessment (intraobserver).Validity was assessed by correlating clinical and quality of life parameters with the domain scores of Sysc. Statistical analysis: a descriptive analysis of the study sample. Reproducibility was assessed using an intraclass correlation coefficient (ICC). Internal consistency was assessed using Cronbach's alpha coefficient. To assess validity we used Spearman correlation coefficient. Five percent was the level of significance adopted for all statistical tests.

Results:

In the evaluation of the questionnaires, the results were similar to the original questionnaire, the internal consistency ranging between 0.73 and 0.93 for each item. The interobserver reproducibility was very good for all domains (α = 0.786 to 0.983) and intraobserver agreement was considered very good for general symptoms domain (ICC = 0.916), good for musculoskeletal symptoms domain (ICC = 0.897) and cardiopulmonary domain (ICC = 0.842) and reasonable for gastrointestinal symptoms domain (ICC = 0.686).

Conclusion:

The Brazilian Portuguese version of SySQ proved to be reproducible and valid for our population, using a recognized methodology for translation and cultural adaptation of questionnaires, as well as to assess the reproducibility and validity.

Systemic sclerosis; Quality of life; Validation of questionnaire

QUESTIONNAIRE OF QUALITY OF LIFE IN SYSTEMIC SCLEROSIS
PUNCTUATION	Score	Min - Max
General symptoms (G1 a G8)		0 - 24
Gastrointestinal symptoms (GI 1 A G17)		0-21
Musculoskeletal symptoms (ME1 a ME11)		0-33
Cardiopulmonary symptoms (CP1 a CP6)		0-18
Thank you for completing this questionnaire. It will let us know more about day-to-day problems that affect patients with systemic sclerosis. It will also help us to better understand and maybe permit us to improve the treatment of this disease. For each item, mark only one number that best demonstrates the effect/importance in your life. Please do not ask for help to answer these questions, because you are the best person to know about your illness and how it affects you. There are no right or wrong answers.
Please use this scale to answer the following questions:
1 □ without difficulty;
2 □ with little difficulty;
3 □ with great difficulty;
4 □ impossible.
Can you ...
01. Cutting meat with a knife? 1 □ 2 □ 3 □ 4 □
02. Bathing and drying yourself alone? 1 □ 2 □ 3 □ 4 □
03. Putting on socks? 1 □ 2 □ 3 □ 4 □
04. Rubbing cream on your body? 1 □ 2 □ 3 □ 4 □
05. Opening and closing a tap? 1 □ 2 □ 3 □ 4 □
06. Getting up from a chair that does not have armrests? 1 □ 2 □ 3 □ 4 □
07. Lie down and get up from bed? 1 □ 2 □ 3 □ 4 □
08. Walking on a flat street? 1 □ 2 □ 3 □ 4 □
09. Climbing stairs? 1 □ 2 □ 3 □ 4 □
10. Eating large pieces of food without cutting them? 1 □ 2 □ 3 □ 4 □
11. Eating an apple? 1 □ 2 □ 3 □ 4 □
Please use this scale to answer the following questions:
1□ no;
2□ light;
3□ moderate;
4□ strong.
Do you feel...
01. Pain in fingers when touching or holding objects? 1 □ 2 □ 3 □ 4 □
02. Stiffness in your hands? 1 □ 2 □ 3 □ 4 □
03. Stiffness in the arms? 1 □ 2 □ 3 □ 4 □
04. Stiffness in the legs? 1 □ 2 □ 3 □ 4 □
05. Pain in your hands when it's cold? 1 □ 2 □ 3 □ 4 □
06. Pain in your feet when it gets cold? 1 □ 2 □ 3 □ 4 □
07. Shortness of breath when walking on a flat street? 1 □ 2 □ 3 □ 4 □
08. Shortness of breath when climbing a ladder (2 stairs with about 10 steps) 1 □ 2 □ 3 □ 4 □
09. Shortness of breath when changing clothes? 1 □ 2 □ 3 □ 4 □
Do you have ...
10. Cough? 1 □ 2 □ 3 □ 4 □
11. Chest catarrh? 1 □ 2 □ 3 □ 4 □
12. Difficulty with deep breathing? 1 □ 2 □ 3 □ 4 □
Please use this scale to answer the following questions:
1 □ No;
2 □ Occasionally;
3 □ Several times;
4 □ Always.
Please use this scale to answer the following questions:
1 □ No;
2 □ Occasionally;
3 □ Several times;
4 □ Always.
Do you...
01. Feel weak hands when holding objects? 1 □ 2 □ 3 □ 4 □
02. Drop objects you are holding from your hand? 1 □ 2 □ 3 □ 4 □
03. Feel pain in your hands? 1 □ 2 □ 3 □ 4 □
04. Have cold hands? 1 □ 2 □ 3 □ 4 □
05. Have difficulty to swallowing? 1 □ 2 □ 3 □ 4 □
06. Feel pain when swallowing food? 1 □ 2 □ 3 □ 4 □
07. Choke during meals? 1 □ 2 □ 3 □ 4 □
08. Have heartburn? 1 □ 2 □ 3 □ 4 □
09. Feel that the food is returning after swallowing it? 1 □ 2 □ 3 □ 4 □

Domains	Minimum	Maximum	Mean	Standard Deviation
General symptoms (0-24)	0	21	9.8	6.9
Gastrointestinal symptoms (0-21)	0	21	7.4	4.9
Musculoskeletal symptoms (0-33)	1	24	12.2	7.2
Cardiopulmonary symptoms (0-18)	0	16	5	4.8

Domains	Interobserver	Intraobserver
General symptoms	0.983	0.916
Gastrointestinal symptoms	0.786	0.647
Musculoskeletal symptoms	0.959	0.897
Cardiopulmonary symptoms	0.924	0.842
Internal consistence among domains		0.765

SySQ SF-36	General symptoms	Gastrointestinal symptoms	Musculoskeletal symptoms	Cardiopulmonary symptoms
Functional capacity	-0.459	-0.190	-0.656^b b p < 0.01.	-0.725^a a p < 0.05.
Physical aspects	-0.473	-0.344	-0.633^b b p < 0.01.	-0.545^b b p < 0.01.
Pain	-0.559^b b p < 0.01.	0.255	-0.662^b b p < 0.01.	-0.502^a a p < 0.05.
General state	-0.600^b b p < 0.01.	0.164	-0.672^b b p < 0.01.	-0.511^a a p < 0.05.
Vitality	-0.619^b b p < 0.01.	0.025	-0.352	-0.094
Social aspects	-0.707^b b p < 0.01.	0.203	-0.541^a a p < 0.05.	-0.288
Emotional aspects	-0.390	0.258	-0.782^b b p < 0.01.	-0.160
Mental health	-0.246	-0.19	-0.457	-0.090

SySQ HAQ e sHAQ	General symptoms	Gastrointestinal symptoms	Musculoskeletal symptoms	Cardiopulmonary symptoms
Dressing up	0.150	0.184	0.061	0.162
Stand up	-0.083	0.118	0.188	0.199
Eating	0.253	0.199	0.158	0.929
Walk	-0.011	0.091	0.207	0.104
Personal hygiene	-0.84	0.172	0.134	0.002
Reaching objects	0.152	0.079	0.134	0.203
Grasping objects	0.272	0.222	0.238	0.230
Other activities	0.019	0.156	0.179	0.231

SySQ EVA	General symptoms	Gastrointestinal symptoms	Musculoskeletal symptoms	Cardiopulmonary symptoms
Raynaud's phenomenon	0,133	0,351	0,058	0,400
Gastrointestinal	0,108	0,203	0,340	0,389
Lung involvement	-0,215	0,724^a a p < 0,01	-0,003	0,344
Pain	0,189	0,07	-0,003	0,099
Disease severity	0,407	0,024	0,281	0,380

Sociedade Brasileira de Reumatologia Av Brigadeiro Luiz Antonio, 2466 - Cj 93., 01402-000 São Paulo - SP, Tel./Fax: 55 11 3289 7165 - São Paulo - SP - Brazil
E-mail: sbre@terra.com.br

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[1] Corresponding author. E-mail: eutilia@terra.com.br (E.A.M. Freire).

Gender
	Male	3
	Female	13
Age (years)
	Mean	44.96
Ethnicity
	White	5
	Black	3
	Brown	8
Education
	Illiterate	0
	Incomplete Elementary School	9
	Full Elementary School	1
	Incomplete High School	2
	Full High School	3
	Incomplete Higher Education	0
	Full Higher Education	1
Form of clinical involvement
	General symptoms	16
	Gastrointestinal	6
	Musculoskeletal	10
	Cardiopulmonary	10
	Renal	0
Subtype of systemic sclerosis
	Diffuse	12
	Limited	2
	Sine scleroderma	0
	Overlapping	2
	Systemic lupus erythematosus	1
	Rheumatoid arthritis	1
Patients with Raynaud phenomenon
	Mean time (years)	15
	Severity (0 - 10)	5
	Mean of attacks per week	4.81
	Disease duration (years)	4.93
Mean
	Gender	9.33