SMA families struggle with health information literacy: Study
Researchers in China say information needs to be publicized, standardized
Patients with spinal muscular atrophy (SMA) in China and their caregivers have low levels of health information literacy, or the ability to access, understand, evaluate, and use information to make health decisions, according to a study.
In interviews, patients and caregivers indicated they had difficulties in assessing and evaluating health information, as well as in determining the reliability of information and understanding professional terms.
The study underscores “the importance of improving health information literacy and calling for medical personnel with experience in the diagnosis and treatment of SMA and media to share knowledge and increase the quality of life of patients with SMA,” the researchers wrote.
The study, “Health information literacy among children with spinal muscular atrophy and their caregivers,” was published in the Italian Journal of Pediatrics.
SMA is caused by mutations in the SMN1 gene, resulting in little or no production of the survival motor neuron (SMN) protein. Without sufficient amounts of this protein, motor neurons — the nerve cells that control voluntary movements — become dysfunctional and die, leading to progressive muscle weakness and atrophy (wasting).
Two-stage study
Early diagnosis is critical in SMA, particularly in light of new, disease-modifying treatments that are able to restore SMN production and slow SMA progression. But in China, “a developing country with a relatively large number of patients with SMA,” healthcare professionals and the general public lag behind “international standards” in understanding the disease and how it is diagnosed and treated, the researchers wrote.
To assess health literacy among children with SMA and their caregivers, the researchers conducted a two-stage study consisting of qualitative interviews with caregivers, followed by a quantitative questionnaire that was completed by children with SMA and their caregivers.
The researchers interviewed 10 caregivers of patients ranging in age from 1.8 to 9.5. They said they found that six patients’ caregivers were “active in accessing information and thus had relatively high health literacy,” while the others were “passive,” with health literacy “relatively low.”
The study analyzed 145 questionnaires involving SMA patients with an average age of 6.8. Fifty-nine percent of the patients had SMA type 2, and 70% had been living with the disease for more than two years.
Ninety-seven percent of their caregivers were parents, with 72% of them women aged approximately 35. They had relatively high levels of education, with 47% holding college degrees or above.
The mean time from symptom onset to the first hospital visit was 4.8 months, and the mean time from initial symptoms to diagnosis was 10.8 months.
Health literacy among both patients and caregivers rose after diagnosis, mainly in the ability to understand and apply health information. However, many still had difficulty searching and evaluating health information, with 61% saying they worried about the quality of information and 42% saying the information was difficult to understand.
Thirty-four percent of participants also reported the search for information required significant energy, and 34% said they felt frustrated when searching for information.
While participants considered medical staff to be the most reliable source of information, they mainly used patient organizations (67%) and search engines (52%) as sources. Participants were particularly interested in getting information on therapy development (89%), rehabilitation therapies (82%), institutions (68%), medical expenses (81%), and welfare policies (76%).
The results showed that “SMA information visibility and standardization need to be improved,” the researchers wrote, adding that “medical personnel with experience in the diagnosis and treatment of SMA and media should aim to share knowledge and increase the quality of life of those with SMA.”
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