MSQ-Job Versioni Ita-Eng

Supporting information file

Title: Validation of the MG-DIS: a disability assessment for Myasthenia Gravis. Authors: Raggi A, Leonardi M, Schiavolin S, Antozzi C, Brenna G, Maggi L, Mantegazza R. Journal: Journal of Neurology. Corresponding Author: Alberto Raggi, PsyD. Neurology, Public Health and Disability Unit – Neurological Institute C. Besta IRCCS Foundation. e-mail: [email protected]

Table 1: Items excluded prior to factor analysis Items excluded due to low (<.300) inter-item correlation Inter-Item Correlation Memory Problems .213 Problems with allergies or infections .159

Items excluded due to presence of more than three correlations >.800 Bivariate Correlation Problems with muscle weakness Correlated with Problems due to muscle fatigability .889 Walking long distances .826 Feel without energy or listless .821 Leisure Activities .816 Problems with household chores Correlated with Shopping for daily needs .815 Leisure Activities .825 Work activities .809 Lifting/Carrying objects .804 Problems with work activities Correlated with Problems due to muscle fatigability .817 Household chores .809 Feel without energy or listless .806 Table 2: Full Factor Table Factor 1 Factor 2 Factor 3 Factor 4 Eigenvalue 11.95 2.62 1.79 1.59 % variance 46% 10.1% 8.4% 6.1% Factor 1. Alpha= .911; Inter-item R.593; Average Item- total R: .726 1.1) …did you have difficulties in dressing, for example putting on or taking off socks and footwear, skirts or .914 .040 .025 .054 trousers, shirts, hats, gloves? 1.2) …did you have difficulties in washing and drying yourself, for example, having a shower, washing your face or .825 .161 .109 .115 hairs? 1.3) … did you have difficulties in picking up small objects .746 .116 .043 .143 (e.g. coins from a table), in using cutlery or scissors? 1.4) … did you have difficulties in cutting food and moving .741 .258 .291 .137 it to the mouth? 1.5) … did you have difficulties in shopping for daily needs? .713 .009 .268 .034 1.6) … did you have difficulties in opening bottles and cans .659 .168 .090 .114 to drink a beverage? 1.7) … did you have problems due to muscle fatigability? .430 .354 .249 .144 Factor 2. Alpha= .868; Inter-item R.563; Average Item- total R: .694 2.1) … did you have difficulties in eating (i.e. chewing and .040 .901 .052 .060 ingesting food)? 2.2) … did you have difficulties in chewing, swallowing (liquids or food)? Did you have problems with excessive .102 .885 .040 .092 salivation or vomiting? 2.3) … did you have difficulties in drinking (i.e. swallowing .117 .863 .091 .121 a beverage)? 2.4) … did you have difficulties in talking with other persons .012 .681 .096 .165 or have difficulties in expressing yourself? 2.5) … did you have voice problems, such as hyper nasality, .303 .644 .172 .377 hoarseness or being voiceless? Factor 3. Alpha= .808; Inter-item R.465; Average Item- total R: .596 3.1) … did you feel anxious sad, low or angry? .147 .162 .795 .034 3.2) … did you have bodily ache, such as headache, back, .174 .010 .628 .049 neck or stomach pain? 3.3) … did you have problems with sleeping, such as falling asleep, waking up during the night, or not feeling refreshed .038 .120 .625 .193 in the morning? 3.4) … did you feel without energy or listless, had lack of .393 .197 .482 .005 appetite or had difficulties in controlling your reactions? 3.5) … did you have difficulties in breathing or felt .092 .220 .403 .194 breathless? Factor 4. Alpha= .846; Inter-item R.641; Average Item- total R: .698 4.1) … did you have difficulties in reading? .067 .068 .025 .903 4.2) … did you have sight problems, such as blurred or double vision, or had difficulties with seeing near or distant .112 .092 .112 .844 objects? 4.3) … did you have difficulties in driving a car or a .295 .000 .148 .505 motorbike? Excl_1) … did you have difficulties in walking for a long distance, such as one kilometre, or over unstable surfaces like .641 .062 .482 .032 sand or snow? [loaded into two factors] Excl_2) … did you have difficulties in lifting carrying, or in .570 .066 .499 .062 putting down objects? [loaded into two factors] Excl_3) …did you have difficulties in brushing teeth, combing, shaving, cutting nails or using a moisturizing .753 .117 .054 .176 lotion? [R>.800 with item 1.2] Excl_4) … did you have difficulties in concentrating, such as being easily distracted or had difficulties in paying attention .077 .155 .542 .516 to several things at once? [loaded into two factors] Excl_5) … did you have difficulties in leisure activities, such as in sport activities, visiting museums, spending time with .416 .048 .453 .227 friends or relatives? [loaded into two factors] Excl_6) … did you have difficulties in seeing (e.g. an object, an event, seeing persons that were doing something)? .094 .023 .053 .895 [R>.800 with item 4.1] Figure 1: Eigenvalues and variance scree-plot

Blue line: descending eigenvalues. Note that the fifth factor has eigenvalue <1. Red line: ascending cumulate variance. Note that the fifth factor would increase the cumulate variance by 3.5%. Table 3: Full Test-retest Correlation matrix Spearman’s Item/Scale RHO Factor 1. Generalized impairment-related problems. .961 1.1) …did you have difficulties in dressing, for example putting on or taking off .586 socks and footwear, skirts or trousers, shirts, hats, gloves? 1.2) …did you have difficulties in washing and drying yourself, for example, .574 having a shower, washing your face or hairs? 1.3) … did you have difficulties in picking up small objects (e.g. coins from a .577 table), in using cutlery or scissors? 1.4) … did you have difficulties in cutting food and moving it to the mouth? .640 1.5) … did you have difficulties in shopping for daily needs? .931 1.6) … did you have difficulties in opening bottles and cans to drink a beverage? .576 1.7) … did you have problems due to muscle fatigability? .853 Factor 2. Bulbar function-related problems. .919 2.1) … did you have difficulties in eating (i.e. chewing and ingesting food)? .839 2.2) … did you have difficulties in chewing, swallowing (liquids or food)? Did .793 you have problems with excessive salivation or vomiting? 2.3) … did you have difficulties in drinking (i.e. swallowing a beverage)? .853 2.4) … did you have difficulties in talking with other persons or have difficulties .960 in expressing yourself? 2.5) … did you have voice problems, such as hyper nasality, hoarseness or being .789 voiceless? Factor 3. Mental health and fatigue-related problems. .858 3.1) … did you feel anxious sad, low or angry? .835 3.2) … did you have bodily ache, such as headache, back, neck or stomach pain? .873 3.3) … did you have problems with sleeping, such as falling asleep, waking up .663 during the night, or not feeling refreshed in the morning? 3.4) … did you feel without energy or listless, had lack of appetite or had .682 difficulties in controlling your reactions? 3.5) … did you have difficulties in breathing or felt breathless? .954 Factor 4. Vision-related problems. .939 4.1) … did you have difficulties in reading? .872 4.2) … did you have sight problems, such as blurred or double vision, or had .837 difficulties with seeing near or distant objects? 4.3) … did you have difficulties in driving a car or a motorbike? .870 MG-DIS total scale .943 Table 4: Reliability analysis by subgroup of AChR and non-AChR patients AChR Patietns MuSK+DN patients Alpha= .922; Inter-item R= .629; Alpha= .880; Inter-item R= .512; Factor 1. Generalized impairment-related Average Item-total R= .756 Average Item-total R= .650 problems. Item-Total Alpha if item Item-Total Alpha if item Correlation excluded Correlation excluded 1.1) …did you have difficulties in dressing, for example putting on or taking off socks and footwear, .761 .894 .685 .825 skirts or trousers, shirts, hats, gloves? 1.2) …did you have difficulties in washing and drying yourself, for example, having a shower, washing your .852 .883 .467 .849 face or hairs? 1.3) … did you have difficulties in picking up small objects (e.g. coins from a table), in using cutlery or .706 .901 .593 .829 scissors? 1.4) … did you have difficulties in cutting food and .735 .906 .784 .813 moving it to the mouth? 1.5) … did you have difficulties in shopping for daily .822 .886 .656 .822 needs? 1.6) … did you have difficulties in opening bottles .740 .896 .800 .804 and cans to drink a beverage? 1.7) … did you have problems due to muscle .673 .912 .562 .842 fatigability? Alpha= .816; Inter-item R= .470; Alpha= .711; Inter-item R= .419; Average Item-total R= .606 Average Item-total R= .462 Factor 2. Bulbar function-related problems. Item-Total Alpha if item Item-Total Alpha if item Correlation excluded Correlation excluded 2.1) … did you have difficulties in eating (i.e. .391 .837 .427 .655 chewing and ingesting food)? 2.2) … did you have difficulties in chewing, swallowing (liquids or food)? Did you have problems .672 .749 .556 .598 with excessive salivation or vomiting? 2.3) … did you have difficulties in drinking (i.e. .674 .752 .392 .668 swallowing a beverage)? 2.4) … did you have difficulties in talking with other .679 .749 .296 .698 persons or have difficulties in expressing yourself? 2.5) … did you have voice problems, such as hyper .615 .768 .638 .534 nasality, hoarseness or being voiceless? Alpha= .797; Inter-item R= .440; Alpha= .836; Inter-item R= .505; Factor 3. Mental health and fatigue-related Average Item-total R= .584 Average Item-total R= .638 problems. Item-Total Alpha if item Item-Total Alpha if item Correlation excluded Correlation excluded 3.1) … did you feel anxious sad, low or angry? .598 .757 .622 .807 3.2) … did you have bodily ache, such as headache, .522 .782 .646 .800 back, neck or stomach pain? 3.3) … did you have problems with sleeping, such as falling asleep, waking up during the night, or not .662 .734 .660 .796 feeling refreshed in the morning? 3.4) … did you feel without energy or listless, had lack of appetite or had difficulties in controlling your .691 .724 .591 .815 reactions? 3.5) … did you have difficulties in breathing or felt .446 .798 .673 .793 breathless? Alpha= .869; Inter-item R= .689; Alpha= .744; Inter-item R= .492; Average Item-total R= .740 Average Item-total R= .567 Factor 4. Vision-related problems. Item-Total Alpha if item Item-Total Alpha if item Correlation excluded Correlation excluded 4.1) … did you have difficulties in reading? .799 .752 .727 .390 4.2) … did you have sight problems, such as blurred or double vision, or had difficulties with seeing near .759 .758 .510 .662 or distant objects? 4.3) … did you have difficulties in driving a car or a .664 .873 .465 .764 motorbike? Alpha= .945; Inter-item R= .452; Alpha= .914; Inter-item R= .366; MG-DIS total scale Average Item-total R= .658 Average Item-total R= .586 Table 5: Italian version of the 20-items MG-DIS Nell’ultimo mese.... No, per nulla Un po’ Abbastanza Molto Del tutto 1.1) … ha avuto difficoltà nel vestirsi (per esempio indossare calze e scarpe, indossare i pantaloni o la gonna, indossare 1 2 3 4 5 una camicia, il cappello o i guanti)? 1.2) … ha avuto difficoltà nel lavarsi e asciugarsi (per esempio, nel fare la doccia e asciugarsi con un asciugamano, 1 2 3 4 5 lavarsi i capelli o il viso)? 1.3) … ha avuto difficoltà nel raccogliere oggetti di piccole dimensioni (ad esempio delle monete da un tavolo), oppure 1 2 3 4 5 ad usare le posate o le forbici? 1.4) … ha avuto difficoltà nel tagliare il cibo e/o portare il 1 2 3 4 5 cibo alla bocca? 1.5) … ha avuto difficoltà nel fare la spesa? 1 2 3 4 5 1.6) … ha avuto difficoltà nell’aprire le bottiglie e le lattine 1 2 3 4 5 per consumare una bevanda? 1.7) … ha avuto problemi di esauribilità muscolare? 1 2 3 4 5 2.1) … ha avuto difficoltà nel consumare un pasto, cioè nel 1 2 3 4 5 masticare e deglutire il cibo? 2.2) … ha avuto problemi nel masticare o nel deglutire solidi 1 2 3 4 5 o liquidi? Ha avuto problemi di vomito di salivazione? 2.3) … ha avuto difficoltà nel bere, cioè nel deglutire le 1 2 3 4 5 bevande? 2.4) … ha avuto difficoltà nel parlare con le persone o ha 1 2 3 4 5 fatto fatica ad esprimersi? 2.5) … ha avuto problemi di voce nasale o rauca, le è capitato di essere senza voce o di non riuscire a far venir 1 2 3 4 5 fuori la voce? 3.1) … le è capitato di sentirsi in ansia, triste, giù di morale o 1 2 3 4 5 arrabbiato? 3.2) … le è capitato di soffrire di mal di schiena, mal di testa, 1 2 3 4 5 dolore al collo, allo stomaco o in altre parti del corpo? 3.3) … ha avuto problemi di sonno, quali far fatica ad addormentarsi, svegliarsi durante la notte o non sentirsi 1 2 3 4 5 riposato al mattino? 3.4) … le è capitato di essere senza energia, senza voglia di fare le cose, di non aver appetito o di aver difficoltà nel 1 2 3 4 5 controllarsi? 3.5) … le è capitato di far fatica a respirare o di sentirsi senza 1 2 3 4 5 respiro? 4.1) … ha avuto difficoltà nel leggere? 1 2 3 4 5 4.2) … di ha avuto problemi di vista, quali vedere doppio, 1 2 3 4 5 vedere sfocato o far fatica a vedere da vicino o da lontano? 4.3) … ha avuto difficoltà nel guidare l’automobile, una 1 2 3 4 5 moto o lo scooter?