ISYQOL QUESTIONNAIRE

Italian Spine Youth Quality of Life (ISYQOL) Measuring Spine Related Quality of Life


The Italian Spine Youth Quality of Life questionnaire (ISYQOL) measures the health-related quality of life of adolescents with spinal deformities.

ISYQOL is the first Rasch analysis-based quality-of-life questionnaire aimed specifically at spinal deformity patients during growth. Rasch analysis is a powerful statistical technique for developing valid and high-quality questionnaires. ISYQOL is a quality of life measure that meets all the requirements of a key measure.

ISYQOL was developed by ISICO (Italian Scientific Spine Institute) in a setting devoted to conservative treatment of all types of spinal deformities, including surgical curves. It is based on concerns expressed by patients and has been shown to be particularly appropriate in patients with adolescent idiopathic scoliosis (AIS) who have not been treated surgically. Spinal deformities are commonly associated with poor health-related quality of life (HRQOL). Several questionnaires (e.g. the Scoliosis Research Society-22 questionnaire [SRS-22]) have been developed to evaluate HRQOL in these conditions. HRQOL is considered one of the most important outcomes of both conservative and surgical treatments, both in adults and in growing youngsters.

Traditionally, SRS22 has always been the quality of life measure most commonly used in scoliosis, particularly AIS, although it is widely used in patients with hyperkyphosis, too. It is a five-domain questionnaire developed according to the classical test theory and, in this framework, shows satisfactory psychometric properties, such as concurrent validity and reliability.

However, ISYQOL performs better than SRS22, having better known-groups validity and (contrary to SRS22) being capable of detecting the impact of disease severity on HRQOL.

ISYQOL consists of 20 items, each scored 0, 1 or 2. In accordance with the Rasch analysis technique, used to develop the questionnaire, the ordinal ISYQOL total score is converted to an interval measure (i.e., ISYQOL measure), which is expressed on a 0%–100% scale (with 100% indicating high quality of life). Seven ISYQOL items assess the impact of bracing on quality of life and these are to be administered only to individuals who actually wear a brace. Thanks to the Rasch analysis approach, it is possible to compare the ISYQOL result of non-brace wearers (who answer only 13 of the 20 items) with that of brace wearers (who complete the entire questionnaire). Spearman’s correlation coefficient (rho) between ISYQOL and SRS22 was used to assess the concurrent validity of ISYQOL. Sex, age, severity, bracing, trunk appearance and deformity type were assessed for known-groups validity.

Assign each answer 0 points for "never", 1 point for "sometimes" or 2 points for "often”, except for questions 5, 6, 10 and 13, where you must instead do the opposite (assigning 2 points for "never", 1 point for "sometimes", or 0 points for "often").

Then, on the basis of the points assigned, you obtain the quality of life percentage and its standard deviation according to the following tables:

No brace

PointsPercentageStandard deviation
0100%15.62
188.43%9.35
280.31%7.28
374.74%6.31
470.39%5.68
566.76%5.25
663.61%4.94
760.79%4.71
858.19%4.53
955.77%4.39
1053.49%4.28
1151.3%4.2
1249.19%4.14
1347.12%4.09
1445.09%4.08
1543.07%4.08
1641.03%4.11
1738.95%4.16
1836.8%4.25
1934.54%4.37
2032.12%4.55
2129.46%4.81
2226.43%5.18
2322.82%5.75
2418.14%6.72
2510.99%8.94
260%15.42
Wearing a brace

PointsPercentageStandard deviation
0100%4.81
189.65%8.48
283.05%6.34
378.76%5.42
475.46%4.87
572.71%4.49
670.33%4.21
768.21%4
866.29%3.83
964.5%3.7
1062.83%3.59
1161.25%3.5
1259.74%3.43
1358.29%3.37
1456.88%3.32
1555.51%3.28
1654.17%3.24
1752.86%3.21
1851.58%3.19
1950.31%3.17
2049.05%3.15
2147.8%3.14
2246.56%3.14
2345.32%3.14
2444.08%3.15
2542.82%3.17
2641.55%3.2
2740.25%3.23
2838.92%3.28
2937.54%3.34
3036.1%3.42
3134.58%3.53
3232.96%3.66
3331.2%3.83
3429.25%4.04
3527.05%4.34
3624.47%4.74
3721.3%5.33
3817.09%6.32
3910.45%8.53
400%14.87

The software automatically calculates as a percentage, the individual’s quality of life. The value in brackets is the result of the questionnaire for the first 13 questions, which do not concern brace wearing: this division of the questionnaire allows you to see the impact of the brace-related items on overall quality of life.

How to interpret it: a higher score, and therefore also a higher percentage, corresponds to a higher quality of life.

The Italian Spine Youth Quality of Life questionnaire measures health-related quality of life of adolescents with spinal deformities better than the reference standard, the Scoliosis Research Society 22 questionnaire.
Caronni A, Donzelli S, Zaina F, Negrini S.
Clin Rehabil. 2019 Apr 12.
Abstract


ISYQOL: a Rasch-consistent questionnaire for measuring health-related quality of life in adolescents with spinal deformities
Caronni A, Sciumè L., Donzelli S, Zaina F, Negrini S.
Spine J. 2017 Sep;17(9):1364-1372
Abstract


Convergent validity of the English translation of the ISYQOL scale (Italian Spine Youth Quality-of-life) in relation to other self-image questionnaires for adolescents with idiopathic scoliosis
Parent E , Lin A , Shearer K , Southon S , Donzelli S , Negrini S
Oral Presentation 2018 13th International Conference on Conservative Management of Spinal Deformites (SOSORT)
Abstract


Comparison of the test-retest reliability of the English translation of the ISYQOL scale (Italian Spine Youth Quality-of-life) to other self-image questionnaires in adolescents with idiopathic scoliosis
Parent E , Lin A , Shearer K , Southon S , Donzelli S , Negrini S
Oral Presentation 2018 13th International Conference on Conservative Management of Spinal Deformites (SOSORT)
Abstract


Internal consistency of the English translation of the Italian Spine Youth Quality-of-life scale (ISYQOL) compared to other self-image questionnaires in adolescents with idiopathic scoliosis
Parent E , Lin A , Shearer K , Southon S , Donzelli S , Negrini S
Oral Presentation 2018 13th International Conference on Conservative Management of Spinal Deformites (SOSORT)
Abstract


ISYQOL discriminates adolescents with spinal deformities subgroups better than the SRS-22 questionnaire
Zaina F , Caronni A , Donzelli S , Sciumé L , Di Felice F , Negrini S
Poster presentation 2017 Eurospine Meeting - Dublin/Ireland
Abstract

ISYQOL QUESTIONNAIRE English version
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ISYQOL QUESTIONNAIRE Italian version
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We want to evaluate your well-being with regard to your back problem (scoliosis, kyphosis or other). Try to answer all of the following questions yourself.

1 Are you afraid that your back problem may get worse? never sometimes often
2 Because of your back problem, are you worried about having back pain as an adult? never sometimes often
3 Do you feel that having a back problem is a big deal? never sometimes often
4 Are you worried that, despite all your efforts to treat your back, it will not get better? never sometimes often
5 Do you think that there are people with conditions more serious than your back problem? never sometimes often
6 Despite your back problem, do you think you lead a normal life? never sometimes often
7 Are you suffering because of your back problem? never sometimes often
8 Does the appearance of your back make you feel uncomfortable? never sometimes often
9 Are you worried about your back problem? never sometimes often
10 Would you say your back problem is not a big concern to you? never sometimes often
11 Does it bother you if others see your back? never sometimes often
12 Are you worried that your back problem is very visible? never sometimes often
13 Despite your back problem, do you live a happy life? never sometimes often
Do you wear a brace because of your back problem? Yes        No
14 Do you have to change the way that you dress because of your brace? never sometimes often
15 Are you worried that the brace is visible under your clothing? never sometimes often
16 Do you feel sad that you are unable to do some of the things that you used to do before you started wearing your brace? never sometimes often
17 Do you feel your movements are restricted while wearing your brace? never sometimes often
18 Does wearing your brace ever make you cry? never sometimes often
19 Do you feel excluded by others because you wear a brace? never sometimes often
20 Is wearing your brace uncomfortable? never sometimes often