The Burden of Spinal Muscular Atrophy on Informal Caregivers
Abstract
:1. Introduction
2. Materials and Methods
Statistical Analysis
3. Results
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Characteristic/Outcome | Type I (n = 11) | Type II (n = 42) | Type III (n = 15) | Total (n = 68) |
---|---|---|---|---|
Caregivers | ||||
Sex female, n (%) | 8 (70) | 34 (81) | 13 (87) | 55 (81) |
Age a, mean (SD) | 42.1 (11.7) | 39.5 (9.0) | 39.3 (7.6) | 39.9 (9.1) |
Employed/self-employed, n (%) | 7 (64) | 24 (57) | 10 (66) | 41 (60) |
Marital status a, n (%) | ||||
Single | 7 (70) | 6 (14) | 1 (7) | 14 (21) |
Married or cohabiting | 3 (30) | 32 (76) | 13 (93) | 48 (73) |
Divorced/separated | 0 (0) | 4 (10) | 0 (0) | 4 (6) |
Zarit b, mean (SD) | 25.1 (23.2) | 34.8 (13.3) | 29.6 (17.1) | 31.9 (16.5) |
Patients | ||||
Sex female, n (%) | 9 (82) | 20 (48) | 7 (47) | 36 (53) |
Age c, mean (SD) | 9.8 (7.7) | 7.7 (4.6) | 6.6 (4.2) | 7.0 (5.2) |
Education d, n (%) | ||||
Educated at an ordinary school | 7 (64) | 3 (8) | 7 (46) | 17 (26) |
Educated at an ordinary centre with special support | 2 (18) | 22 (56) | 6 (40) | 30 (46) |
Educated at a special needs education centre | 0 (0) | 3 (8) | 0 (0) | 3 (5) |
Home schooled | 0 (0) | 1 (3) | 1 (7) | 2 (3) |
Nursery school | 0 (0) | 8 (21) | 1 (7) | 9 (14) |
Not receiving education | 2 (18) | 2 (5) | 0 (0) | 4 (6) |
Genetic test confirmation of SMA (yes), n % | 9 (82) | 35 (83) | 12 (80) | 56 (82) |
Activity | Type I | Type II | Type III | All | ||||
---|---|---|---|---|---|---|---|---|
Main Caregiver | All Caregivers | Main Caregiver | All Caregivers | Main Caregiver | All Caregivers | Main Caregiver | All Caregivers | |
Basic hygiene, dressing | 1.82 (1.01) | 3.23 (2.18) | 1.26 (1.11) | 1.62 (1.2) | 0.58 (0.36) | 0.91 (0.58) | 1.2 (1.04) | 1.73 (1.48) |
Feeding the patient | 1.61 (1.88) | 2.5 (2.67) | 1.33 (1.45) | 1.71 (1.92) | 0.45 (0.63) | 0.69 (1.09) | 1.18 (1.43) | 1.61 (1.97) |
Bathing or showering | 0.86 (0.53) | 1.61 (1.16) | 0.7 (0.6) | 1 (0.96) | 0.38 (0.36) | 0.71 (0.64) | 0.66 (0.56) | 1.03 (0.96) |
Helping the patient to move | 1.18 (0.9) | 2.05 (1.21) | 2.15 (2.38) | 2.75 (2.71) | 0.74 (1.32) | 1.39 (2.61) | 1.68 (2.08) | 2.34 (2.54) |
Total BADL | 5.47 (2.71) | 9.38 (4.77) | 5.44 (3.71) | 7.08 (4.42) | 2.15 (2.34) | 3.71 (4.52) | 4.72 (3.54) | 6.71 (4.78) |
Cooking and preparing special meals | 0.82 (0.72) | 1.55 (1.27) | 0.65 (0.82) | 0.91 (1.12) | 0.18 (0.36) | 0.25 (0.49) | 0.57 (0.75) | 0.87 (1.1) |
Administering drugs/minor cures | 1.18 (0.84) | 1.98 (1.58) | 1.07 (1.19) | 1.35 (1.47) | 0.64 (1.31) | 0.83 (1.53) | 0.99 (1.17) | 1.33 (1.52) |
Other IADL a | 0.03 (0.1) | 0.03 (0.1) | 0.02 (0.14) | 0.05 (0.3) | 0 (0) | 0 (0) | 0.02 (0.12) | 0.03 (0.24) |
Total IADL | 2.03 (1.12) | 3.55 (2.17) | 1.74 (1.59) | 2.31 (2.18) | 0.83 (1.3) | 1.08 (1.51) | 1.59 (1.5) | 2.24 (2.16) |
Other activities directly related to the disease | 0.8 (0.73) | 1.39 (1.25) | 0.68 (1.12) | 1.09 (1.72) | 0.17 (0.36) | 0.8 (1.49) | 0.59 (0.96) | 1.08 (1.59) |
All activities | 8.3 (3.6) | 14.32 (6.94) | 7.86 (4.8) | 10.48 (6.41) | 3.14 (2.42) | 5.59 (4.73) | 6.89 (4.62) | 10.02 (6.68) |
Informal Caregiving Time a (All Time of Care, Main Caregiver Plus Other Caregivers) | |||
High Burden of Care (more than 10 h per day) | Intermediate Burden of Care (between 5 and 10 h per day) | Low Burden of Care (less than 5 h per day) | |
dy/dx (Standard Error) | dy/dx (Standard Error) | dy/dx (Standard Error) | |
Type of SMA (reference category = type III) | |||
Type I | 0.36 * (0.17) | −0.05 (0.04) | −0.31 * (0.15) |
Type II | 0.30 ** (0.10) | −0.04 (0.04) | −0.26 ** (0.08) |
n | 64 | ||
LR chi2 | 35.9 | ||
Pseudo R2 | 0.26 | ||
Informal caregiving time a (main caregiver’s time) | |||
dy/dx (Standard Error) | dy/dx (Standard Error) | dy/dx (Standard Error) | |
Type of SMA (reference category = type III) | |||
Type I | 0.39 * (0.20) | −0.05 (0.05) | −0.34 * (0.17) |
Type II | 0.44 ** (0.12) | −0.06 (0.06) | −0.38 ** (0.09) |
n | 64 | ||
LR chi2 | 20.87 | ||
Pseudo R2 | 0.15 |
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Aranda-Reneo, I.; Peña-Longobardo, L.M.; Oliva-Moreno, J.; Litzkendorf, S.; Durand-Zaleski, I.; Tizzano, E.F.; López-Bastida, J. The Burden of Spinal Muscular Atrophy on Informal Caregivers. Int. J. Environ. Res. Public Health 2020, 17, 8989. https://doi.org/10.3390/ijerph17238989
Aranda-Reneo I, Peña-Longobardo LM, Oliva-Moreno J, Litzkendorf S, Durand-Zaleski I, Tizzano EF, López-Bastida J. The Burden of Spinal Muscular Atrophy on Informal Caregivers. International Journal of Environmental Research and Public Health. 2020; 17(23):8989. https://doi.org/10.3390/ijerph17238989
Chicago/Turabian StyleAranda-Reneo, Isaac, Luz María Peña-Longobardo, Juan Oliva-Moreno, Svenja Litzkendorf, Isabelle Durand-Zaleski, Eduardo F. Tizzano, and Julio López-Bastida. 2020. "The Burden of Spinal Muscular Atrophy on Informal Caregivers" International Journal of Environmental Research and Public Health 17, no. 23: 8989. https://doi.org/10.3390/ijerph17238989