Informal SMA Caregivers Surveyed in Europe Report High Daily Burden

Non-professional caregivers who care for children with spinal muscular atrophy (SMA) carry a high daily burden that negatively affects certain aspects of their lives, according to a questionnaire study conducted in Europe. 

Additionally, more severe disease was correlated with more time spent caring for the patient and a higher burden on these informal caregivers — a term that refers to individuals, often family members, who provide ongoing care and assistance for a patient in a non-paid status. 

The study, “The Burden of Spinal Muscular Atrophy on Informal Caregivers,” was published in the International Journal of Environmental Research and Public Health. 

SMA can cause considerable disability, and many patients are unable to engage in regular daily activities and must rely on family or other healthcare services for support. 

While many studies have explored the professional healthcare burden and patient costs associated with SMA, few have focused on the daily burden of informal, non-professional caregivers, particularly in European countries. 

To address this lack of data, researchers at the University of Castilla-La Mancha in Spain asked primary informal caregivers in Spain, France, Germany, and the U.K. to complete self-administered questionnaires on how caregiving time was distributed and the main factors associated with caregiving and the burden they create. 

Two questionnaires were distributed by email via patient organizations, one providing information about patients and the other about primary caregivers. Data were collected using a website developed for the study.

A total of 68 informal caregivers of children diagnosed with SMA completed the questionnaires, including 27 patients in Spain, 11 in the U.K., 14 in Germany, and 16 in France. Of these, 11 were diagnosed with SMA type 1, 42 had type 2, and 15 had type 3. For the purposes of the study, type 1 was considered the most severe form of the disease, while type 3 is generally more mild.

Overall, the mean daily hours of care the patients received was 10.02, with the primary caregiver providing 6.89 mean hours per day, representing 68% of total time per day, and other caregivers provided 3.13 mean hours of care. 

Basic activities of daily living (BADL), such as helping patients move, bathe, dress, and eat, required 6.71 mean hours per day, which mostly involved assisting patients in moving and carrying out basic hygiene and dressing tasks. 

The total mean BADL time for all caregivers of SMA type 1 patients was 9.38 hours, 7.08 hours for type 2, and 3.71 hours for patients with type 3 SMA. 

Instrumental activities of daily living (IADL), which included preparing special meals or administering medications, spending time at medical visits, and attending to financial matters or social activities, required 22.4% of their time. 

Here, the total mean IADL time for type 1 patients was 3.55 hours, 2.31 hours for type 2 patients, and 1.08 hours for type 3 individuals.

Activities other than BADL or IADL required a daily mean of 1.08 hours.

However, the authors pointed out that “caution is needed when interpreting the results by type of SMA when using a small sample size.”

Patients younger than 10 years old needed an average of 9.72 hours of caregiving, while those older than 10 required 10.64 hours per day on average. 

In contrast, more time was needed for patients using non-invasive breathing support (12.39 hours of daily care time) compared with those who did not need breathing support (8.17 hours per day). 

No major differences were found between patients from France (mean 9.32 hours) and Spain (9.1 hours), while patients in the U.K (12.5 hours) and Germany (10.65 hours) required the most care time. 

No differences in care time were identified based on the patients’ gender; however, informal male caregivers provided an average of 12.92 hours of care, compared with 9.34 hours by female caregivers. The difference was present in all activities, with feeding and administering medicines driving the difference. Again, the authors caution that only 13 (19%) informal caregivers were male, which is a small sample size. 

A statistical analysis found a strong relationship between the type of SMA and the burden of care. The primary caregivers of type 1 patients had a 39% higher probability of providing more than 10 hours of daily care, compared with the caregivers of type 3 patients. In addition, the primary caregivers of type 1 patients were 34% less likely to provide fewer than five hours per day than type 3 caregivers. 

These time-intensive care tasks were also found to have a negative effect on the lives of informal caregivers, with 56.1% of those employed saying they experienced work-related problems due to care priorities, 30.4% reported they took days off work, and 34.8% said they had trouble managing their work schedule. 

Compared with other studies, the hours needed for informal care for SMA patients were very similar to the time required for other disabling diseases, including Duchenne muscular dystrophy, juvenile idiopathic arthritis, stroke, and Alzheimer’s disease. 

“SMA has a high social impact, not only on the patients who suffer from this disease but also on their caregivers,” the researchers concluded. “The severity of SMA is positively associated with the duration of informal care.”

“The hours of informal care provided could, therefore, reflect a more understandable and quantifiable burden on families and relatives, which could be a useful tool when designing specific public policies aimed at reducing the impact of this disease in the family sphere,” the team added.