Quality of Life, Caregiver Burden, and Symptoms of Depression and Anxiety in Parents of Children with Spinal Muscular Atrophy: A Comparison with Healthy Controls
Abstract
1. Introduction
- Caregiver burden and symptoms of depression and anxiety would be higher, while quality of life, life satisfaction, and mental well-being would be lower, in parents of children with SMA compared to parents of healthy children.
- Caregiver burden and symptoms of depression and anxiety would be higher, while quality of life, life satisfaction, and mental well-being would be lower, in parents of children with SMA type 1 compared to parents of children with SMA types 2 and 3.
- There would be negative associations between quality of life and symptoms of depression and anxiety in parents of children with SMA. In addition, there would be negative associations between quality of life and caregiver burden in parents of children with SMA.
2. Materials and Methods
2.1. Participants
- Having a child aged between 0 and 18 and with the diagnosis of SMA;
- Being literate.
- Having a child aged between 0 and 18 and without any chronic disease;
- Being literate.
- Having a chronic disease diagnosis in the parent that may cause physical limitations, significant pain, or substantial impacts on daily life (such as rheumatological, orthopedic diseases or cardiac failure);
- Having another child or adult with a chronic illness under the parent’s care.
2.2. Procedure
2.3. Assessment of Parents
2.3.1. Sociodemographic Characteristics
2.3.2. Health-Related Quality of Life (HRQOL)
2.3.3. Caregiver Burden
2.3.4. Symptoms of Depression and Anxiety
2.3.5. Life Satisfaction
2.3.6. Well-Being
2.4. Statistical Analysis
3. Results
3.1. Sociodemographic Characteristics
3.2. Comparison of Scale Scores Between the Case and the Control Group
3.3. Comparison of Scale Scores Between SMA Types
3.4. The Correlational Analysis Between the Scale Scores in the Case Group
4. Discussion
4.1. Comparison of Case and Controls Groups
4.2. Comparison of SMA Caregivers by Disease Type
4.3. Relationships Between the HRQOL, Caregiver Burden, and Symptoms of Depression and Anxiety in the Case Group
4.4. Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Characteristics n (%) | SMA Group (n = 42) | Control Group (n = 42) | p Value |
---|---|---|---|
Age 1 | 7 (5–12) | 7 (5–12) | 0.999 a |
Gender 1 | 0.383 b | ||
Female | 23 (54.8) | 19 (45.2) | |
Male | 19 (45.2) | 23 (54.8) | |
Number of siblings 1 | 1 (0–2) | 0 (0–1) | 0.037 a |
Lives in Istanbul 1 | 0.463 b | ||
No | 13 (31) | 10 (23.8) | |
Yes | 29 (69) | 32 (76.2) | |
Going to school 1 | <0.001 b | ||
No | 28 (66.7) | 9 (21.4) | |
Yes | 14 (33.3) | 33 (78.6) | |
Caregiver | 0.999 b | ||
Mother | 22 (52.4) | 22 (52.4) | |
Father | 20 (47.6) | 20 (47.6) | |
Caregiver | 0.002 b | ||
Unemployed | 16 (38.1) | 9 (21.5) | |
Worker | 17 (40.5) | 8 (19) | |
Officer | 9 (21.4) | 25 (59.5) | |
Known medical diagnosis 1 | 0.786 b | ||
No | 33 (78.6) | 34 (81) | |
Yes | 9 (21.4) | 8 (19) | |
Psychiatric diagnosis 1 | 0.999 b | ||
No | 36 (85.7) | 36 (85.7) | |
Yes | 6 (14.3) | 6 (14.3) | |
Regular medication 1 use | 0.192 b | ||
No | 35 (83.3) | 30 (71.4) | |
Yes | 7 (16.7) | 12 (28.6) | |
Income Status 2 | <0.001 b | ||
Very low | 11 (26.2) | 1 (2.4) | |
Low | 26 (61.9) | 22 (52.4) | |
Moderate/high | 5 (11.9) | 19 (45.2) | |
Level of education 2 | <0.001 b | ||
Primary education | 15 (35.7) | 4 (9.5) | |
High School | 16 (38.1) | 8 (19) | |
University | 11 (26.2) | 30 (71.5) | |
Marital Status 2 | 0.332 b | ||
Single | 7 (16.7) | 4 (9.5) | |
Married | 35 (83.3) | 38 (90.5) |
Parameters | SMA Group (n = 42) | Control Group (n = 42) | p Value |
---|---|---|---|
Physical health QoL | 53.5 (42.8–60.7) | 58.9 (50–65.1) | 0.004 a |
Psychological health QoL | 63.1 ± 17.2 | 71.9 ± 12.1 | 0.009 b |
Social relationships QoL | 59.1 ± 22 | 71.2 ± 17.4 | 0.007 b |
Environmental QoL | 54.6 (39.8–75) | 71.8 (60.9–84.3) | <0.001 a |
ZCBS | 31.5 (15.7–40) | 26.5 (18–37.2) | 0.623 a |
HADS Anxiety Subscale | 8.5 (4.7–11) | 8 (5–11) | 0.802 a |
HADS Depression Subscale | 9 (4–12) | 5.5 (3.7–8) | 0.005 a |
SWLS | 15 (9–19) | 16 (11–19.2) | 0.251 a |
The Flourishing Scale | 40.5 (31.7–49) | 43.5 (29.7–48) | 0.929 a |
Parameters | Type I (n = 16) | Type II (n = 13) | Type III (n = 13) | p Value |
---|---|---|---|---|
Physical health QoL | 50 (42.8–57.1) | 57.1 (44.6–64.2) | 50 (32.1–66) | 0.391 |
Psychological health QoL | 54.1 (50–61.4) | 70.8 (62.5–79.1) | 62.5 (45.8–85.4) | 0.061 |
Social relationships QoL | 54.1 (37–72.9) | 58.3 (45.8–83.3) | 58.3 (45.8–70.8) | 0.658 |
Environmental QoL | 53.1 (37–60.9) | 50 (37.5–73.4) | 62.5 (46.8–81.2) | 0.317 |
ZCBS | 35 (29–41.5) | 31 (18–46) | 15 (11.5–30) | 0.010 |
HADS Anxiety Subscale | 10 (6.5–13) | 8 (5–9) | 4 (2.5–10) | 0.037 |
HADS Depression Subscale | 9.5 (5.2–13.7) | 8 (5–11.5) | 7 (3–10) | 0.367 |
SWLS | 15.5 (10–17) | 15 (7.5–19.5) | 14 (9–20) | 0.996 |
The Flourishing Scale | 37 (31.2–44.2) | 40 (31–50.5) | 44 (32–50.5) | 0.510 |
Parameters | Psychological Health QoL | Social Relationships QoL | Environmental QoL | ZCBS | HADS Anxiety Subscale | HADS Depression Subscale | SWLS | The Flourishing Scale | |
---|---|---|---|---|---|---|---|---|---|
Physical health QoL | r | 0.681 | 0.589 | 0.528 | −0.292 | −0.345 | −0.430 | 0.414 | −0.056 |
p | <0.001 | <0.001 | <0.001 | 0.061 | 0.025 | 0.004 | 0.006 | 0.725 | |
Psychological health QoL | r | 1.000 | 0.553 | 0.593 | −0.285 | −0.410 | −0.581 | 0.597 | −0.191 |
p | <0.001 | <0.001 | 0.067 | 0.007 | <0.001 | <0.001 | 0.225 | ||
Social relationships QoL | r | 1.000 | 0.676 | −0.297 | −0.442 | −0.560 | 0.430 | 0.012 | |
p | <0.001 | 0.056 | 0.003 | <0.001 | 0.005 | 0.939 | |||
Environmental QoL | r | 1.000 | −0.451 | −0.431 | −0.556 | 0.419 | −0.143 | ||
p | 0.003 | 0.004 | <0.001 | 0.006 | 0.367 | ||||
ZCBS | r | 1.000 | 0.632 | 0.400 | −0.219 | 0.027 | |||
p | <0.001 | 0.009 | 0.163 | 0.865 | |||||
HADS Anxiety Subscale | r | 1.000 | 0.635 | −0.325 | 0.032 | ||||
p | <0.001 | 0.036 | 0.838 | ||||||
HADS Depression Subscale | r | 1.000 | −0.476 | 0.296 | |||||
p | 0.001 | 0.057 | |||||||
SWLS | r | 1.000 | −0.354 | ||||||
p | 0.021 |
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Koyuncu, Z.; Sönmez Kurukaya, S.; Uluğ, F.; Dilek, T.D.; Zindar, Y.; Arslan, B.; Tayşi, B.; Anaç, E.; Balkanas, M.; Kesik, S.; et al. Quality of Life, Caregiver Burden, and Symptoms of Depression and Anxiety in Parents of Children with Spinal Muscular Atrophy: A Comparison with Healthy Controls. Medicina 2025, 61, 930. https://doi.org/10.3390/medicina61050930
Koyuncu Z, Sönmez Kurukaya S, Uluğ F, Dilek TD, Zindar Y, Arslan B, Tayşi B, Anaç E, Balkanas M, Kesik S, et al. Quality of Life, Caregiver Burden, and Symptoms of Depression and Anxiety in Parents of Children with Spinal Muscular Atrophy: A Comparison with Healthy Controls. Medicina. 2025; 61(5):930. https://doi.org/10.3390/medicina61050930
Chicago/Turabian StyleKoyuncu, Zehra, Seda Sönmez Kurukaya, Fitnat Uluğ, Tuğçe Damla Dilek, Yılmaz Zindar, Büşra Arslan, Berkay Tayşi, Elif Anaç, Mustafa Balkanas, Sena Kesik, and et al. 2025. "Quality of Life, Caregiver Burden, and Symptoms of Depression and Anxiety in Parents of Children with Spinal Muscular Atrophy: A Comparison with Healthy Controls" Medicina 61, no. 5: 930. https://doi.org/10.3390/medicina61050930
APA StyleKoyuncu, Z., Sönmez Kurukaya, S., Uluğ, F., Dilek, T. D., Zindar, Y., Arslan, B., Tayşi, B., Anaç, E., Balkanas, M., Kesik, S., Sak, K., Demirel, Ö. F., Doğangün, B., & Saltık, S. (2025). Quality of Life, Caregiver Burden, and Symptoms of Depression and Anxiety in Parents of Children with Spinal Muscular Atrophy: A Comparison with Healthy Controls. Medicina, 61(5), 930. https://doi.org/10.3390/medicina61050930