Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA
Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-repor...
Ausführliche Beschreibung
Gespeichert in:
| Autor*in: |
Trundell, Dylan [verfasserIn] Skalicky, Anne [verfasserIn] Staunton, Hannah [verfasserIn] Hareendran, Asha [verfasserIn] Le Scouiller, Stephanie [verfasserIn] Barrett, Louise [verfasserIn] Cooper, Owen [verfasserIn] Gorni, Ksenija [verfasserIn] Seabrook, Tim [verfasserIn] Jethwa, Sangeeta [verfasserIn] Cano, Stefan [verfasserIn] |
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| Format: |
E-Artikel |
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| Sprache: |
Englisch |
| Erschienen: |
2021 |
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| Schlagwörter: |
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| Übergeordnetes Werk: |
Enthalten in: Journal of the neurological sciences - Amsterdam [u.a.] : Elsevier Science, 1964, 432 |
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| Übergeordnetes Werk: |
volume:432 |
| DOI / URN: |
10.1016/j.jns.2021.120059 |
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ELV007200854 |
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| 245 | 1 | 0 | |a Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA |
| 264 | 1 | |c 2021 | |
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| 520 | |a Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-reported outcome measure for individuals with SMA aged ≥12 years, and an observer-reported outcome measure for caregivers of individuals aged ≥2 years, was developed and evaluated in two phases. In Phase 1, 30 draft items were developed following review of the literature. Semi-structured interviews were then conducted with individuals with SMA and caregivers to establish content validity, resulting in a 29-item measure. In Phase 2, classical test theory and Rasch measurement theory methods were used to examine the cross-sectional and longitudinal measurement performance of the SMAIS in two independent datasets.Results: Phase 1 qualitative findings supported the relevance, acceptability, and comprehensibility of 29 items. In Phase 2, psychometric analyses indicated that the five response options were poorly discriminated and were thus collapsed to three options for subsequent analyses. Items showed statistical misfit, implying that the SMAIS was not assessing a single underlying construct. Based on conceptual evaluation of the items, and assessment of item performance, a more targeted 22-item upper limb score was derived. Reliability and validity analyses confirmed acceptable measurement properties of this score.Conclusions: Qualitative and quantitative analyses support the use of the 22-item SMAIS–Upper Limb Module in individuals with Type 2 and non-ambulant Type 3 SMA, aged ≥2 years. | ||
| 650 | 4 | |a Spinal muscular atrophy | |
| 650 | 4 | |a Qualitative methods | |
| 650 | 4 | |a Patient-reported outcomes | |
| 650 | 4 | |a Observer-reported outcomes | |
| 650 | 4 | |a Psychometrics | |
| 650 | 4 | |a Rasch measurement theory | |
| 700 | 1 | |a Skalicky, Anne |e verfasserin |4 aut | |
| 700 | 1 | |a Staunton, Hannah |e verfasserin |4 aut | |
| 700 | 1 | |a Hareendran, Asha |e verfasserin |4 aut | |
| 700 | 1 | |a Le Scouiller, Stephanie |e verfasserin |4 aut | |
| 700 | 1 | |a Barrett, Louise |e verfasserin |4 aut | |
| 700 | 1 | |a Cooper, Owen |e verfasserin |4 aut | |
| 700 | 1 | |a Gorni, Ksenija |e verfasserin |4 aut | |
| 700 | 1 | |a Seabrook, Tim |e verfasserin |4 aut | |
| 700 | 1 | |a Jethwa, Sangeeta |e verfasserin |4 aut | |
| 700 | 1 | |a Cano, Stefan |e verfasserin |4 aut | |
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10.1016/j.jns.2021.120059 doi (DE-627)ELV007200854 (ELSEVIER)S0022-510X(21)02761-1 DE-627 ger DE-627 rda eng 610 DE-600 44.90 bkl Trundell, Dylan verfasserin aut Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA 2021 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-reported outcome measure for individuals with SMA aged ≥12 years, and an observer-reported outcome measure for caregivers of individuals aged ≥2 years, was developed and evaluated in two phases. In Phase 1, 30 draft items were developed following review of the literature. Semi-structured interviews were then conducted with individuals with SMA and caregivers to establish content validity, resulting in a 29-item measure. In Phase 2, classical test theory and Rasch measurement theory methods were used to examine the cross-sectional and longitudinal measurement performance of the SMAIS in two independent datasets.Results: Phase 1 qualitative findings supported the relevance, acceptability, and comprehensibility of 29 items. In Phase 2, psychometric analyses indicated that the five response options were poorly discriminated and were thus collapsed to three options for subsequent analyses. Items showed statistical misfit, implying that the SMAIS was not assessing a single underlying construct. Based on conceptual evaluation of the items, and assessment of item performance, a more targeted 22-item upper limb score was derived. Reliability and validity analyses confirmed acceptable measurement properties of this score.Conclusions: Qualitative and quantitative analyses support the use of the 22-item SMAIS–Upper Limb Module in individuals with Type 2 and non-ambulant Type 3 SMA, aged ≥2 years. Spinal muscular atrophy Qualitative methods Patient-reported outcomes Observer-reported outcomes Psychometrics Rasch measurement theory Skalicky, Anne verfasserin aut Staunton, Hannah verfasserin aut Hareendran, Asha verfasserin aut Le Scouiller, Stephanie verfasserin aut Barrett, Louise verfasserin aut Cooper, Owen verfasserin aut Gorni, Ksenija verfasserin aut Seabrook, Tim verfasserin aut Jethwa, Sangeeta verfasserin aut Cano, Stefan verfasserin aut Enthalten in Journal of the neurological sciences Amsterdam [u.a.] : Elsevier Science, 1964 432 Online-Ressource (DE-627)306661152 (DE-600)1500645-1 (DE-576)081986742 1878-5883 nnns volume:432 GBV_USEFLAG_U SYSFLAG_U GBV_ELV SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 44.90 Neurologie AR 432 |
| spelling |
10.1016/j.jns.2021.120059 doi (DE-627)ELV007200854 (ELSEVIER)S0022-510X(21)02761-1 DE-627 ger DE-627 rda eng 610 DE-600 44.90 bkl Trundell, Dylan verfasserin aut Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA 2021 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-reported outcome measure for individuals with SMA aged ≥12 years, and an observer-reported outcome measure for caregivers of individuals aged ≥2 years, was developed and evaluated in two phases. In Phase 1, 30 draft items were developed following review of the literature. Semi-structured interviews were then conducted with individuals with SMA and caregivers to establish content validity, resulting in a 29-item measure. In Phase 2, classical test theory and Rasch measurement theory methods were used to examine the cross-sectional and longitudinal measurement performance of the SMAIS in two independent datasets.Results: Phase 1 qualitative findings supported the relevance, acceptability, and comprehensibility of 29 items. In Phase 2, psychometric analyses indicated that the five response options were poorly discriminated and were thus collapsed to three options for subsequent analyses. Items showed statistical misfit, implying that the SMAIS was not assessing a single underlying construct. Based on conceptual evaluation of the items, and assessment of item performance, a more targeted 22-item upper limb score was derived. Reliability and validity analyses confirmed acceptable measurement properties of this score.Conclusions: Qualitative and quantitative analyses support the use of the 22-item SMAIS–Upper Limb Module in individuals with Type 2 and non-ambulant Type 3 SMA, aged ≥2 years. Spinal muscular atrophy Qualitative methods Patient-reported outcomes Observer-reported outcomes Psychometrics Rasch measurement theory Skalicky, Anne verfasserin aut Staunton, Hannah verfasserin aut Hareendran, Asha verfasserin aut Le Scouiller, Stephanie verfasserin aut Barrett, Louise verfasserin aut Cooper, Owen verfasserin aut Gorni, Ksenija verfasserin aut Seabrook, Tim verfasserin aut Jethwa, Sangeeta verfasserin aut Cano, Stefan verfasserin aut Enthalten in Journal of the neurological sciences Amsterdam [u.a.] : Elsevier Science, 1964 432 Online-Ressource (DE-627)306661152 (DE-600)1500645-1 (DE-576)081986742 1878-5883 nnns volume:432 GBV_USEFLAG_U SYSFLAG_U GBV_ELV SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 44.90 Neurologie AR 432 |
| allfields_unstemmed |
10.1016/j.jns.2021.120059 doi (DE-627)ELV007200854 (ELSEVIER)S0022-510X(21)02761-1 DE-627 ger DE-627 rda eng 610 DE-600 44.90 bkl Trundell, Dylan verfasserin aut Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA 2021 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-reported outcome measure for individuals with SMA aged ≥12 years, and an observer-reported outcome measure for caregivers of individuals aged ≥2 years, was developed and evaluated in two phases. In Phase 1, 30 draft items were developed following review of the literature. Semi-structured interviews were then conducted with individuals with SMA and caregivers to establish content validity, resulting in a 29-item measure. In Phase 2, classical test theory and Rasch measurement theory methods were used to examine the cross-sectional and longitudinal measurement performance of the SMAIS in two independent datasets.Results: Phase 1 qualitative findings supported the relevance, acceptability, and comprehensibility of 29 items. In Phase 2, psychometric analyses indicated that the five response options were poorly discriminated and were thus collapsed to three options for subsequent analyses. Items showed statistical misfit, implying that the SMAIS was not assessing a single underlying construct. Based on conceptual evaluation of the items, and assessment of item performance, a more targeted 22-item upper limb score was derived. Reliability and validity analyses confirmed acceptable measurement properties of this score.Conclusions: Qualitative and quantitative analyses support the use of the 22-item SMAIS–Upper Limb Module in individuals with Type 2 and non-ambulant Type 3 SMA, aged ≥2 years. Spinal muscular atrophy Qualitative methods Patient-reported outcomes Observer-reported outcomes Psychometrics Rasch measurement theory Skalicky, Anne verfasserin aut Staunton, Hannah verfasserin aut Hareendran, Asha verfasserin aut Le Scouiller, Stephanie verfasserin aut Barrett, Louise verfasserin aut Cooper, Owen verfasserin aut Gorni, Ksenija verfasserin aut Seabrook, Tim verfasserin aut Jethwa, Sangeeta verfasserin aut Cano, Stefan verfasserin aut Enthalten in Journal of the neurological sciences Amsterdam [u.a.] : Elsevier Science, 1964 432 Online-Ressource (DE-627)306661152 (DE-600)1500645-1 (DE-576)081986742 1878-5883 nnns volume:432 GBV_USEFLAG_U SYSFLAG_U GBV_ELV SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 44.90 Neurologie AR 432 |
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10.1016/j.jns.2021.120059 doi (DE-627)ELV007200854 (ELSEVIER)S0022-510X(21)02761-1 DE-627 ger DE-627 rda eng 610 DE-600 44.90 bkl Trundell, Dylan verfasserin aut Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA 2021 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-reported outcome measure for individuals with SMA aged ≥12 years, and an observer-reported outcome measure for caregivers of individuals aged ≥2 years, was developed and evaluated in two phases. In Phase 1, 30 draft items were developed following review of the literature. Semi-structured interviews were then conducted with individuals with SMA and caregivers to establish content validity, resulting in a 29-item measure. In Phase 2, classical test theory and Rasch measurement theory methods were used to examine the cross-sectional and longitudinal measurement performance of the SMAIS in two independent datasets.Results: Phase 1 qualitative findings supported the relevance, acceptability, and comprehensibility of 29 items. In Phase 2, psychometric analyses indicated that the five response options were poorly discriminated and were thus collapsed to three options for subsequent analyses. Items showed statistical misfit, implying that the SMAIS was not assessing a single underlying construct. Based on conceptual evaluation of the items, and assessment of item performance, a more targeted 22-item upper limb score was derived. Reliability and validity analyses confirmed acceptable measurement properties of this score.Conclusions: Qualitative and quantitative analyses support the use of the 22-item SMAIS–Upper Limb Module in individuals with Type 2 and non-ambulant Type 3 SMA, aged ≥2 years. Spinal muscular atrophy Qualitative methods Patient-reported outcomes Observer-reported outcomes Psychometrics Rasch measurement theory Skalicky, Anne verfasserin aut Staunton, Hannah verfasserin aut Hareendran, Asha verfasserin aut Le Scouiller, Stephanie verfasserin aut Barrett, Louise verfasserin aut Cooper, Owen verfasserin aut Gorni, Ksenija verfasserin aut Seabrook, Tim verfasserin aut Jethwa, Sangeeta verfasserin aut Cano, Stefan verfasserin aut Enthalten in Journal of the neurological sciences Amsterdam [u.a.] : Elsevier Science, 1964 432 Online-Ressource (DE-627)306661152 (DE-600)1500645-1 (DE-576)081986742 1878-5883 nnns volume:432 GBV_USEFLAG_U SYSFLAG_U GBV_ELV SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 44.90 Neurologie AR 432 |
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10.1016/j.jns.2021.120059 doi (DE-627)ELV007200854 (ELSEVIER)S0022-510X(21)02761-1 DE-627 ger DE-627 rda eng 610 DE-600 44.90 bkl Trundell, Dylan verfasserin aut Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA 2021 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-reported outcome measure for individuals with SMA aged ≥12 years, and an observer-reported outcome measure for caregivers of individuals aged ≥2 years, was developed and evaluated in two phases. In Phase 1, 30 draft items were developed following review of the literature. Semi-structured interviews were then conducted with individuals with SMA and caregivers to establish content validity, resulting in a 29-item measure. In Phase 2, classical test theory and Rasch measurement theory methods were used to examine the cross-sectional and longitudinal measurement performance of the SMAIS in two independent datasets.Results: Phase 1 qualitative findings supported the relevance, acceptability, and comprehensibility of 29 items. In Phase 2, psychometric analyses indicated that the five response options were poorly discriminated and were thus collapsed to three options for subsequent analyses. Items showed statistical misfit, implying that the SMAIS was not assessing a single underlying construct. Based on conceptual evaluation of the items, and assessment of item performance, a more targeted 22-item upper limb score was derived. Reliability and validity analyses confirmed acceptable measurement properties of this score.Conclusions: Qualitative and quantitative analyses support the use of the 22-item SMAIS–Upper Limb Module in individuals with Type 2 and non-ambulant Type 3 SMA, aged ≥2 years. Spinal muscular atrophy Qualitative methods Patient-reported outcomes Observer-reported outcomes Psychometrics Rasch measurement theory Skalicky, Anne verfasserin aut Staunton, Hannah verfasserin aut Hareendran, Asha verfasserin aut Le Scouiller, Stephanie verfasserin aut Barrett, Louise verfasserin aut Cooper, Owen verfasserin aut Gorni, Ksenija verfasserin aut Seabrook, Tim verfasserin aut Jethwa, Sangeeta verfasserin aut Cano, Stefan verfasserin aut Enthalten in Journal of the neurological sciences Amsterdam [u.a.] : Elsevier Science, 1964 432 Online-Ressource (DE-627)306661152 (DE-600)1500645-1 (DE-576)081986742 1878-5883 nnns volume:432 GBV_USEFLAG_U SYSFLAG_U GBV_ELV SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 44.90 Neurologie AR 432 |
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Enthalten in Journal of the neurological sciences 432 volume:432 |
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Spinal muscular atrophy Qualitative methods Patient-reported outcomes Observer-reported outcomes Psychometrics Rasch measurement theory |
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Trundell, Dylan @@aut@@ Skalicky, Anne @@aut@@ Staunton, Hannah @@aut@@ Hareendran, Asha @@aut@@ Le Scouiller, Stephanie @@aut@@ Barrett, Louise @@aut@@ Cooper, Owen @@aut@@ Gorni, Ksenija @@aut@@ Seabrook, Tim @@aut@@ Jethwa, Sangeeta @@aut@@ Cano, Stefan @@aut@@ |
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2021-01-01T00:00:00Z |
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Trundell, Dylan ddc 610 bkl 44.90 misc Spinal muscular atrophy misc Qualitative methods misc Patient-reported outcomes misc Observer-reported outcomes misc Psychometrics misc Rasch measurement theory Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA |
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610 DE-600 44.90 bkl Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA Spinal muscular atrophy Qualitative methods Patient-reported outcomes Observer-reported outcomes Psychometrics Rasch measurement theory |
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Trundell, Dylan Skalicky, Anne Staunton, Hannah Hareendran, Asha Le Scouiller, Stephanie Barrett, Louise Cooper, Owen Gorni, Ksenija Seabrook, Tim Jethwa, Sangeeta Cano, Stefan |
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development of the sma independence scale–upper limb module (smais–ulm): a novel scale for individuals with type 2 and non-ambulant type 3 sma |
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Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA |
| abstract |
Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-reported outcome measure for individuals with SMA aged ≥12 years, and an observer-reported outcome measure for caregivers of individuals aged ≥2 years, was developed and evaluated in two phases. In Phase 1, 30 draft items were developed following review of the literature. Semi-structured interviews were then conducted with individuals with SMA and caregivers to establish content validity, resulting in a 29-item measure. In Phase 2, classical test theory and Rasch measurement theory methods were used to examine the cross-sectional and longitudinal measurement performance of the SMAIS in two independent datasets.Results: Phase 1 qualitative findings supported the relevance, acceptability, and comprehensibility of 29 items. In Phase 2, psychometric analyses indicated that the five response options were poorly discriminated and were thus collapsed to three options for subsequent analyses. Items showed statistical misfit, implying that the SMAIS was not assessing a single underlying construct. Based on conceptual evaluation of the items, and assessment of item performance, a more targeted 22-item upper limb score was derived. Reliability and validity analyses confirmed acceptable measurement properties of this score.Conclusions: Qualitative and quantitative analyses support the use of the 22-item SMAIS–Upper Limb Module in individuals with Type 2 and non-ambulant Type 3 SMA, aged ≥2 years. |
| abstractGer |
Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-reported outcome measure for individuals with SMA aged ≥12 years, and an observer-reported outcome measure for caregivers of individuals aged ≥2 years, was developed and evaluated in two phases. In Phase 1, 30 draft items were developed following review of the literature. Semi-structured interviews were then conducted with individuals with SMA and caregivers to establish content validity, resulting in a 29-item measure. In Phase 2, classical test theory and Rasch measurement theory methods were used to examine the cross-sectional and longitudinal measurement performance of the SMAIS in two independent datasets.Results: Phase 1 qualitative findings supported the relevance, acceptability, and comprehensibility of 29 items. In Phase 2, psychometric analyses indicated that the five response options were poorly discriminated and were thus collapsed to three options for subsequent analyses. Items showed statistical misfit, implying that the SMAIS was not assessing a single underlying construct. Based on conceptual evaluation of the items, and assessment of item performance, a more targeted 22-item upper limb score was derived. Reliability and validity analyses confirmed acceptable measurement properties of this score.Conclusions: Qualitative and quantitative analyses support the use of the 22-item SMAIS–Upper Limb Module in individuals with Type 2 and non-ambulant Type 3 SMA, aged ≥2 years. |
| abstract_unstemmed |
Background: The amount of assistance required to perform daily activities for individuals with Type 2 and non-ambulant Type 3 spinal muscular atrophy (SMA) is often cited as meaningful for quality of life, and important to routinely assess.Methods: The SMA Independence Scale (SMAIS), a patient-reported outcome measure for individuals with SMA aged ≥12 years, and an observer-reported outcome measure for caregivers of individuals aged ≥2 years, was developed and evaluated in two phases. In Phase 1, 30 draft items were developed following review of the literature. Semi-structured interviews were then conducted with individuals with SMA and caregivers to establish content validity, resulting in a 29-item measure. In Phase 2, classical test theory and Rasch measurement theory methods were used to examine the cross-sectional and longitudinal measurement performance of the SMAIS in two independent datasets.Results: Phase 1 qualitative findings supported the relevance, acceptability, and comprehensibility of 29 items. In Phase 2, psychometric analyses indicated that the five response options were poorly discriminated and were thus collapsed to three options for subsequent analyses. Items showed statistical misfit, implying that the SMAIS was not assessing a single underlying construct. Based on conceptual evaluation of the items, and assessment of item performance, a more targeted 22-item upper limb score was derived. Reliability and validity analyses confirmed acceptable measurement properties of this score.Conclusions: Qualitative and quantitative analyses support the use of the 22-item SMAIS–Upper Limb Module in individuals with Type 2 and non-ambulant Type 3 SMA, aged ≥2 years. |
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Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA |
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| score |
7.399935 |