Quality of Life in Amyotrophic Lateral Sclerosis Patients and Care Burden of Caregivers in Sardinia during COVID-19 Pandemic
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Setting
2.2. Study Design
2.3. Questionnaire Design
2.4. Statistical Analysis
3. Results
3.1. Quality of Life of the ALS Patient in Sardinia—Modified ALSSQOL-SF
3.2. Caregivers’ Burden—Modified Zarit Burden Interview
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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ALS Patients | North n, % | Center n, % | South n, % | Total n, % | |
---|---|---|---|---|---|
Sex | F | 12 (44.4) | 2 (11.8) | 8 (36.4) | 22 (33.3) |
M | 15 (55.6) | 15 (88.2) | 14 (63.6) | 44 (66.7) | |
Age range (years) | <40 | 1 (3.7) | 0 (0) | 0 (0) | 1 (1.5) |
41–50 | 1 (3.7) | 0 (0) | 3 (13.6) | 4 (6.1) | |
51–60 | 7 (25.9) | 6 (35.3) | 7 (31.9) | 20 (30.3) | |
61–70 | 9 (33.4) | 7 (41.2) | 5 (22.7) | 21 (31.8) | |
71–80 | 5 (18.5) | 3 (17.6) | 5 (22.7) | 13 (19.7) | |
>80 | 4 (14.8) | 1 (5.9) | 2 (9.1) | 7 (10.6) | |
CLIS/FTD | No | 21 (77.8) | 12 (70.6) | 15 (68.2) | 48 (72.7) |
Yes | 6 (22.2) | 5 (29.4) | 7 (31.8) | 18 (27.3) | |
Tracheostomy | No | 12 (44.4) | 3 (17.6) | 8 (36.4) | 23 (34.8) |
Yes | 15 (55.6) | 14 (82.4) | 14 (63.6) | 43 (65.2) | |
Gastrostomy | No | 9 (33.3) | 3 (17.6) | 5 (22.7) | 17 (25.8) |
Yes | 18 (66.7) | 14 (82.4) | 17 (77.3) | 49 (74.2) |
Items ALSSQOL-SF 1 | Median | Percentile 25 | Percentile 75 | Mode |
---|---|---|---|---|
Global quality of life, 30 days before | 5 | 4 | 8 | 5 |
| 4 | 0 | 6 | 0 |
| 8 | 5 | 9 | 8 |
| 5 | 0 | 8 | 0 |
| 3 | 0 | 7 | 0 |
| 9 | 8 | 10 | 10 |
| 4 | 1 | 8 | 0 |
| 5 | 4 | 8 | 4 |
| 6 | 4 | 9 | 10 |
| 9 | 6 | 10 | 10 |
| 4 | 1 | 8 | 0 |
| 9 | 7 | 10 | 10 |
| 7 | 2 | 10 | 10 |
| 7 | 4 | 9 | 10 |
| 5 | 1 | 8 | 0 |
| 5 | 3 | 7 | 0 a |
| 9 | 7 | 10 | 10 |
| 7 | 3 | 10 | 10 |
| 5 | 3 | 8 | 3 a |
| 7 | 4 | 9 | 10 |
| 8 | 4 | 10 | 10 |
| 5 | 3 | 9 | 10 |
| 8 | 5 | 10 | 10 |
COVID-19 emergency period | ||||
| 5 | 0 | 8 | 0 |
| 4 | 0 | 7 | 0 |
| 7 | 2 | 8 | 7 |
| 3 | 0 | 8 | 0 |
| 5 | 2 | 8 | 0 |
| 6 | 1 | 8 | 0 |
| 1 | 0 | 5 | 0 |
| 2 | 0 | 5 | 0 |
Ordinal Regression Number of obs = 47 | |||||
---|---|---|---|---|---|
LR chi2(8) = 32.62 | |||||
Prob > chi2 = 0.0001 | |||||
Loglikelihood = −83. | Pseudo R2 = 0.1641 | ||||
QOL GL | Odds Ratio | z | p > |z| | (95% Conf. Interval) | |
Age | 0.9394915 | −0.23 | 0.815 | 0.5562592 | 1.58675 |
Sex | 1.559553 | 0.73 | 0.468 | 0.4698767 | 5.176261 |
Negative emotions | 0.7020899 | −2.77 | 0.006 | 0.5464532 | 0.9020537 |
People/environment interactions | 1.217894 | 1.05 | 0.295 | 0.8423722 | 1.76082 |
Physical/emotional intimacy | 1.559291 | 2.56 | 0.010 | 1.110363 | 2.189726 |
Spirituality | 0.9818377 | −0.19 | 0.846 | 0.8162948 | 1.180952 |
Physical Symptoms | 0.705342 | −1.79 | 0.074 | 0.4811217 | 1.034057 |
Bulbar function | 1.009111 | 0.08 | 0.934 | 0.8154303 | 1.248796 |
Caregivers | North | Center | South | Total | |
---|---|---|---|---|---|
Age (mean, SD) | 56 ± 13 | 55 ± 14 | 60 ± 13 | 57 ± 13 | |
Sex | F | 22 | 17 | 18 | 57 |
M | 8 | 3 | 8 | 19 | |
Time interval Starting Assistance-Diagnosis (days) | Median | −31 | 0 | 0 | 0 |
IQR | −304–61 | 0–199 | −123–31 | −151–92 | |
Weekly Assistance (hours) | Mode | >50 | >50 | >50 | >50 |
Items Zarit Burden Interview (ZBI) 1 | Median | Percentile 25 | Percentile 75 | Mode |
---|---|---|---|---|
| 1 | 0 | 5 | 0 |
| 8 | 4 | 10 | 10 |
| 8 | 3 | 10 | 10 |
| 0 | 0 | 0 | 0 |
| 0 | 0 | 3 | 0 |
| 0 | 0 | 2 | 0 |
| 10 | 7 | 10 | 10 |
| 10 | 8 | 10 | 10 |
| 0 | 0 | 4 | 0 |
| 6 | 1 | 9 | 0 a |
| 5 | 1 | 9 | 0 |
| 7 | 2 | 10 | 10 |
| 0 | 0 | 0 | 0 |
| 8 | 2 | 10 | 10 |
| 6 | 2 | 10 | 10 |
| 2 | 0 | 8 | 0 |
| 5 | 0 | 9 | 0 |
| 0 | 0 | 1 | 0 |
| 2 | 0 | 7 | 0 |
| 4 | 0 | 7 | 0 |
| 3 | 0 | 6 | 0 |
| 5 | 1 | 9 | 0 a |
COVID-19 emergency period | ||||
| 5 | 0 | 10 | 0 |
| 3 | 0 | 9 | 0 |
| 6 | 2 | 9 | 10 |
| 0 | 0 | 5 | 0 |
| 6 | 1 | 9 | 0 a |
| 0 | 0 | 6 | 0 |
| 4 | 0 | 8 | 0 |
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Gentili, D.; Deiana, G.; Chessa, V.; Calabretta, A.; Marras, E.; Solinas, C.; Gugliotta, C.; Azara, A. Quality of Life in Amyotrophic Lateral Sclerosis Patients and Care Burden of Caregivers in Sardinia during COVID-19 Pandemic. Healthcare 2023, 11, 1641. https://doi.org/10.3390/healthcare11111641
Gentili D, Deiana G, Chessa V, Calabretta A, Marras E, Solinas C, Gugliotta C, Azara A. Quality of Life in Amyotrophic Lateral Sclerosis Patients and Care Burden of Caregivers in Sardinia during COVID-19 Pandemic. Healthcare. 2023; 11(11):1641. https://doi.org/10.3390/healthcare11111641
Chicago/Turabian StyleGentili, Davide, Giovanna Deiana, Vanna Chessa, Annalisa Calabretta, Elisabetta Marras, Costanzo Solinas, Carmelo Gugliotta, and Antonio Azara. 2023. "Quality of Life in Amyotrophic Lateral Sclerosis Patients and Care Burden of Caregivers in Sardinia during COVID-19 Pandemic" Healthcare 11, no. 11: 1641. https://doi.org/10.3390/healthcare11111641