Health information literacy among children with spinal muscular atrophy and their caregivers in China

Health information literacy among children with spinal muscular atrophy and their caregivers in China | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Health information literacy among children with spinal muscular atrophy and their caregivers in China Weiran Zhang, Yijie Feng, Yue Yan, Mei Yao, Feng Gao, Wei Lin, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4423889/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 26 Aug, 2024 Read the published version in Italian Journal of Pediatrics → Version 1 posted 5 You are reading this latest preprint version Abstract Background Spinal muscular atrophy (SMA) is an autosomal recessive motor neuron disease that leads to multiple organ dysfunction. The advent of disease-modifying treatments makes the early diagnosis of SMA critical. Health information literacy is vital for obtaining, understanding, screening, and using health information. Considering the importance of early diagnosis and the challenges in obtaining accurate information on patients with SMA, this study assesses health information literacy among children with SMA and their caregivers in China. Methods Interviews with the caregivers of 10 patients with SMA were conducted by neurologists specializing in SMA. A questionnaire for evaluating the level of health information literacy was further developed among 145 children with SMA and their caregivers. Parameters, such as the age at the onset of the first symptom and time from recognition of the first symptom to diagnosis, were examined. Health information literacy was measured using four dimensions: cognition, search, evaluation, and application. Results The average time from the first symptom to first medical consultation was 4.8 months, and from the first symptom to diagnosis was 10.8 months. Thirty-five (24%) patients had poor health information literacy, while 26 (18%) had high health information literacy. The overall score for health information literacy was 69; the scores for health information cognition and application were 90 and 84, respectively. The scores for evaluation (61) and search (57) were low. Medical personnel were considered the most professional and credible sources of information. Additionally, search engines and patient organizations were the other two most important sources of health literacy. Conclusion Patients with SMA and their caregivers had low levels of health information literacy. Cognition and application were high, whereas evaluation and search were poor. As such, 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. spinal muscular atrophy health information literacy China children Background Spinal muscular atrophy (SMA) is a severe neurodegenerative condition caused by recessive mutations in the survival motor neuron (SMN) 1 gene resulting in insufficient SMN proteins. SMA is characterized by progressive muscle weakness and atrophy, primarily in the proximal limbs [ 1 ]. With disease progression, SMA often involves multisystem physical dysfunction, such as respiratory, digestive, cardiovascular, and motor disorders, which significantly reduces patients’ quality of life [ 2 , 3 ]. As with other rare disorders, patients with SMA often experience delayed diagnoses [ 4 ]. However, unlike for many other orphan diseases, effective treatments are available for SMA. Disease-modifying treatments based on antisense oligonucleotides, gene transfer, and splicing modifier molecules improve prognosis [ 5 ]. The representative drugs, nusinersen and risdiplam, have received approval for SMA treatment in China. The advent of new therapies has increased the need for early SMA diagnosis [ 6 ]. Previous studies have shown a significant delay from the onset of the first clinical signs to definitive diagnosis. Early treatment administration results in greater treatment benefits [ 7 ]. Thus, early diagnosis is critical to improve patient prognosis. The diagnosis and treatment of SMA in China have entered a new era, shifting from having no available medicine to providing accurate diagnosis, treatment, management, and access to medication. Despite the typical clinical features and ease of performing genetic analyses, a recent review of the diagnostic process for SMA reported problems and frequent delays between the onset of clinical signs and diagnosis for all types of SMA [ 8 ]. Patients affected by rare diseases are dispersed worldwide and face a variety of challenges, including lack of specialized care, delays in diagnosis, negative social consequences, and other psychosocial burdens [ 9 ]. Patients and their families can overcome this using technology to access information and connect with other patients online [ 10 ]. Advances in information technology and communication are creating cultural shifts and changing how people develop expertise. These trends have important implications for healthcare systems, being particularly relevant for empowering patients dealing with rare diseases. Health literacy is the ability to access, understand, evaluate, and use essential health information to make basic health decisions [ 11 ]. The World Health Organization considers health literacy an important topic and one of the greatest determinants of health; hence, it suggests monitoring and coordinating strategic plans in terms of health promotion in societies [ 12 ]. A study conducted by the USA Center for Health Care Strategies indicated that people with limited health literacy are less likely to understand the written and verbal information provided by health experts and thus have poor health conditions [ 13 ]. Health information literacy emphasizes a range of information abilities, including recognizing health information needs; identifying possible sources of information and using them to retrieve relevant information; assessing the quality and application of information in a specific situation; and analyzing, understanding, and using information to make scientific health decisions. Health information literacy combines health and information literacy and emphasizes the human ability to discover and use health-related information [ 14 ]. Amid the current information revolution, a lack of information is rather unlikely; nonetheless, this is often a reality for people with rare orphan diseases [ 15 ]. At present, public health information literacy surveys conducted in China primarily focus on common chronic diseases, such as diabetes, hypertension, coronary heart disease, and stroke; however, surveys on the health information literacy of patients with rare diseases, including SMA, in China have not been conducted [ 16 ]. A study on the health literacy and self-efficacy levels of parents of patients with SMA showed that the parents had low health literacy and self-efficacy levels. A positive significant relationship exists between health literacy and self-efficacy [ 17 ]. Therefore, this study examines the health information literacy of patients with SMA in China to promote the early diagnosis of SMA and identify effective approaches for the survival of patients with SMA in China. Methods Study design This cross-sectional study on the health literacy of patients with SMA was conducted based on two aspects: qualitative interviews with the caregivers of patients with SMA and a quantitative questionnaire survey administered to children with SMA and their caregivers. Patients and their caregivers were recruited from December 2021 to December 2023 in Children’s Hospital of Zhejiang University School of Medicine. This study was approved by the Medical Ethics Committee of the Children’s Hospital of Zhejiang University School of Medicine (2022-IRB-199). The patients and their caregivers were informed and provided their consent. Interview design Through sample size estimation, the minimum sample size with clinical significance for the interview was 10. Taking the difficulty of actual operation into account, we finally selected the caregivers of 10 patients with SMA to participate in the interview. The interviews were conducted by two trained neurologists specializing in SMA, one responsible for communicating with the patients and the other for taking real-time notes and supplementing questions via a telephone or face-to-face communication. The inclusion criteria and key points of the interview are listed in Table 1 . Table 1 Inclusion criteria and key points of the interview with caregivers and patients with SMA Inclusion criterion Gender Both male and female patients Age Pre-school, primary, middle, and high school, university, and working patients Disease type Patients with SMA types I–IV Disease duration Patients whose disease duration was less or more than 1 year Whether they are members of a patient organization Patients or patients’ family members who have joined or not joined a patient organization Key points of the interview Before diagnosis 1. Initial symptoms of disease onset, information on the first medical details, including the visit time, hospital, department, and initial causes 2. Referral status and reasons 3. Understanding of SMA At diagnosis 1. Inspection and diagnosis process 2. Doctor communication situation 3. Treatment situation and the causes 4. Further understanding of SMA 5. Proactive searching for SMA-related information 6. Patient organization joining status 7. Information channels 8. Specific information content and form of each channel 9. Unmet needs and expectations After diagnosis 1. Treatment situation and the causes 2. Daily care situation 3. Reception and active search of SMA-related information 4. Information channels 5. Specific information content and form of each channel 6. Unmet needs and expectations Questionnaire survey After the interviews, a comprehensive and acceptable online questionnaire survey was distributed to the children with SMA and their caregivers. The inclusion criterion for patients was a diagnosis of 5qSMA by genetic testing and they had to be able to clearly express their views and thoughts. To avoid bias as much as possible, participants whose family members worked in advertising, magazines, TV stations and other media industries, pharmacies, and hospitals and drug production and sales-related industries were excluded. The questionnaire consisted of three parts: (1) demographic and background information, including age, marital status, academic status/years, employment status, family income, and field of study; (2) the interval between symptom onset and first hospital visit, mean time between symptom onset and diagnosis, and types of medical investigations conducted for diagnosis; and (3) health literacy measuring four main dimensions, namely recognizing health information needs, retrieving relevant information, assessing the quality of information, and applying information. Responses were rated on a five-point Likert scale (1 = no knowledge; 5 = advanced knowledge). Finally, the total score was calculated by aggregating the scores of all dimensions (ranging from 0 to 100) and dividing them by the number of dimensions. Data analysis SPSS analytical software, version 22 (IBM Corporation, Armonk, NY, USA), was used for the statistical data analysis. For the qualitative data analysis, frequencies and percentages were used. The impact of different demographic data on the scores of the four aspects of health literacy was analyzed through an independent sample t -test. Results The interview results of 10 patients with SMA and their caregivers suggested that they had experienced varying degrees of diagnostic delays and had to travel to multiple hospitals before finally being diagnosed with SMA. Before diagnosis, patients’ caregivers did not know which channels to use to learn about the disease, while after diagnosis, they joined a patient organization and learned about SMA through social media and tweets, among others. Before the availability of SMA disease-modifying treatment drugs in China, parents and caregivers did not pay much attention to the disease. When drugs became available, they learnt to use various social media and tools to acquire more diagnosis and treatment information. For the questionnaire survey, a total of 166 questionnaires were collected; 145 valid questionnaires were included in the final analysis, comprising patients from 24 Chinese provinces. Participants’ characteristics are summarized in Table 2 . The average age of the patients was 81.9 months (6.8 years), and 70% of them had a disease course of more than 2 years. In terms of clinical classification, most participants had type II SMA. The basic conditions of patients with type I SMA differed significantly from those of patients with types II and III SMA who were characterized by younger age, shorter disease duration, and poorer medical insurance. Of the participants, 97% were family members of patients, most of whom were women aged approximately 35 years. They had a high level of education, with 50% holding postgraduate degrees. Table 2 Demographic characteristics of caregivers and patients with SMA Characteristics of caregivers (N = 145) n (%) Caregivers Parents 140 (97) Non-parents 5 (3) Gender Male 40 (28) Female 105 (72) Age (years) < 30 17 (12) 30–45 96 (66) 45–50 30 (21) ≥ 50 2 (1) Annual family income (thousand RMB) 300 7 (5) Educational level Below high school diploma 77 (53) High school diploma 25 (17) Bachelor’s degree or above 43 (30) Characteristics of patients (N = 145) n (%) Age (years) < 2 19 (13) 2–5 43 (30) 5–12 66 (46) ≥ 12 17 (12) SMA type Ⅰ 20 (14) Ⅱ 86 (59) Ⅲ 39 (27) Disease duration < 12M 19 (13) 12–24M 25 (17) 24–60M 43 (30) ≥ 60M 58 (40) Insurance status Social insurance 104 (72) Business insurance 28 (19) None 33 (23) The characteristics of the caregivers of patients with SMA before diagnosis are shown in Table 3 . The average score of the participants’ awareness of motor milestones was 51, with nearly one-third being completely unaware of the need to pay attention to their children’s motor milestones at different growth stages. The mean time from the first symptom onset to first hospital visit was 4.8 months, including 1.5 months for patients with type I SMA, 3.9 months for patients with type II SMA, and up to 8.3 months for patients with type III SMA. For family members of patients with SMA with motor milestone awareness scores 60. When patients had symptoms that were not yet diagnosed, 39% did not conduct any information inquiry. The participants with awareness of information reported having limited information channels, primarily from Internet search engines. The most prominent feature of this stage was the low cognition of information, which was an obstacle to information inquiry. Table 3 Characteristics of patients with SMA and their caregivers before diagnosis Awareness of motor milestones for children aged 0–6Y (N = 145, mean) N (%) No knowledge (1) 29% Little knowledge (2) 20% Some knowledge (3) 30% Good knowledge (4) 10% Advanced knowledge (5) 11% Interval between the first symptom and first consultation (months; N = 145, mean) 4.8 SMA I (N = 20) 1.5 SMA II (N = 86) 3.9 SMA III (N = 39) 8.3 Awareness of motor milestones affects the first consultation for SMA I and II (N = 106, mean) Awareness of motor milestones for children aged 0–6Y < 60 ≥ 60 53 53 Interval between the first symptom and first consultation (months) < 60 ≥ 60 4.1 2.8 Interval between the onset of clinical signs and diagnosis (months; N = 145, mean) Patients from provincial capital city (N = 36) 10.8 Patients from non-provincial capital city (N = 108) 7.0 SMA type I (N = 20) II (N = 86) III (N = 39) 12.0 3.8 8.6 19.0 Number of doctors visited (N = 145, mean) Patients from provincial capital city (N = 36) 3.1 Patients from non-provincial capital city (N = 108) 2.9 SMA type I (N = 20) II (N = 86) III (N = 39) 3.2 3.4 2.9 3.4 The mean time from the first consultation to diagnosis was 6 months and the average number of referrals was 3.1 months. Almost all patients sought treatment from the wrong department, such as rehabilitation, growth, and development, leading to different degrees of misdiagnosis. New media platforms, such as short videos, are intuitive and play an increasingly important role in helping some patients shorten their diagnosis time. The average time from symptom onset to diagnosis was 7 months and the average number of referrals was 2.9 for patients from provincial capital cities. Conversely, the average time from symptom onset to diagnosis was 12 months, and the average number of referrals was 3.2 for patients from non-provincial capital cities. For patients with good health literacy, the mean time from the first consultation to diagnosis was 3.4 months, and the average time from the first consultation to diagnosis was 3.3 months. Health literacy among the caregivers of patients with SMA after diagnosis is summarized in Tables 4 and 5 . The cognition of health information of patients with SMA and their family members improved after diagnosis. However, information channels remained singular. Many patients and their family members expressed difficulties with information queries, screening, and evaluation, and most joined patient groups. Rehabilitation was the main treatment for patients with SMA, and only 23% received disease-modifying therapy. Approximately one-third of the patients did not receive any treatment. Table 4 Health information literacy of patients with SMA and their caregivers after diagnosis (N = 145, mean) Health literacy variables Score Health information cognition (score: 90) It is very important to be informed about SMA. 92 I hope to get SMA-related information from a variety of sources. 93 I can express what SMA health information I need. 84 Health information search (score: 57) I know where to get SMA-related health information. 81 It is difficult to obtain SMA-related health information from print media. 45 It is difficult to obtain SMA-related health information from new media. 54 It is difficult to obtain SMA-related health information from radio and television. 49 Health information evaluation (score: 61) It is easy to evaluate the reliability of SMA-related health information in print media. 62 It is easy to evaluate the reliability of SMA-related health information in new media. 66 SMA-related health information is often difficult to understand. 53 I do not know whom to trust when talking to others about SMA-related issues. 60 It is easy to evaluate the reliability of SMA-related health information on radio and television. 62 Health information application (score: 84) I will apply the SMA-related health information I have obtained for my benefit and the benefit of those around me. 81 I am willing to share what I know about SMA health information with others. 88 Table 5 Health information literacy scores of patients with SMA (N = 145, mean) Health literacy variables Total Score 75 (N = 145) (N = 35, 24%) (N = 84, 58%) (N = 26, 18%) Awareness of motor milestones for children aged 0–6Y 51 43 52 58 Interval between the onset of clinical signs and the first consultation in months 4.8 4.4 5.3 3.4 Interval between the onset of clinical signs and diagnosis in months 6.0 8.9 5.6 3.3 Number of doctors visited 3.1 3.6 2.9 3.2 Current treatment status (%) Rehabilitation 47 46 46 50 Nusinersen 18 17 19 15 Salbutamol 10 11 10 12 Traditional Chinese medicine 9 9 8 12 Other 6 6 4 12 Risdiplam 5 0 5 12 None 32 34 35 19 Most participants had low health information literacy, with an average score of 69. The two aspects with high scores were health information cognition and application, with scores of 90 and 84, respectively. The abilities to evaluate (61) and search for health information (57) were low. As the respondents were mostly from organizations for patients with SMA, the average level of education was high. With the introduction of the world’s first SMA disease-modifying drug into medical insurance and drug accessibility improvement, more patients with lower educational levels can seek treatment in hospitals. Therefore, the actual health information literacy level of patients with SMA and their families may be lower than the results of this survey. The score for health information cognition was 90, the highest among the four dimensions of health information literacy. Respondents’ information needs for new drug research and development, medical insurance policies, multidisciplinary management, rehabilitation nursing, and other aspects were constantly changing and updated. The number of channels mastered by the respondents increased to 3.8. However, health information search literacy remained the lowest, with a score of 57. Although medical staff were considered the most professional and reliable sources of SMA information, patient organizations (67%) and search engines (52%) were the two most frequently used sources. Participants were concerned about various aspects of treatment, including drug development (89%), rehabilitation methods (82%), institutions (68%), medical costs (81%), and welfare policies (76%). The average score for health information evaluation was 61, indicating that the participants found it difficult to judge information reliability (62 for print media, 66 for new media, 62 for radio and television), understand relevant professional terms (53), and judge the credibility of information sources (60). Health information application scored 84, indicating a strong desire to share information (88 points). Additionally, the ability to apply the acquired health information in practice improved (81). Multidisciplinary, whole-course management and the daily care of patients with SMA are closely related to their quality of life, are relatively complex, and rely on the collaboration of multiple disciplines, such as neurology, orthopedics, respiratory, rehabilitation, nutrition, acute care, and home care. Respiratory management is integral for many patients with type I SMA. Most patients with types II and III SMA face nutrition and dietary problems. The information barriers they face are prominent, such as worrying about the quality of information (61%), information being difficult to understand (42%), the search for information requiring significant energy (34%), and feeling frustrated when searching for information (34%). In addition, the normal demographic data had no significant impact on the scores of the four aspects of health literacy: cognition, search, evaluation, and application (all P > 0.05). Discussion This study was the first to consider the health information literacy of patients with SMA in China. It revealed that there exists a diagnostic delay in SMA and poor health literacy among patients with SMA and their caregivers. SMA is a neuromuscular disease with high morbidity and mortality rates, particularly types I and II. Studies showed a significant delay from the onset of the initial symptoms to a definitive diagnosis [ 18 ]. In our study, the mean time from the first symptom onset to first hospital visit was long, especially for patients with type III SMA. Early diagnosis is critical to improve patient prognosis. The time window for SMA diagnosis can be shortened if parents and caregivers become aware of the early signs of abnormal growth and development in neonates through scientific popularization or a life-cycle health detection system [ 4 ]. Furthermore, during the stage of symptom onset and seeking medical treatment, respondents with a high awareness of motor milestones in children aged 0–6 years were more likely to seek medical treatment and had a shorter time to diagnosis. Moreover, an Internet-based registry platform and collaboration networks could be established and neonatal and carrier screening for SMA could be performed to reduce the diagnostic time window. Health information literacy affects people’s ability to accurately search for and use health information and adopt healthier behaviors. Low health literacy has become a global public health concern. At the beginning of the 21st century, the USA implemented health information literacy education programs [ 19 ]. The first European survey on health literacy found that 47% of the population in eight European countries had low health literacy [ 20 ]. Research on Isfahan showed that the average health literacy score of participants was poor or marginal and they therefore required more explanation from medical staff to understand and implement the health and medical instructions [ 21 ]. In China, health literacy has been receiving attention from scholars since 2012 and survey results show that approximately 91.2% of Chinese residents have low health literacy [ 22 ]. According to our results, the overall level of health information literacy of patients with SMA and their families was low. They had a high level of health information literacy for cognition and application, with low levels for search and evaluation. The health information literacy of patients with SMA and their family members improved significantly from the onset of symptoms to diagnosis, treatment, and daily disease management. This was primarily reflected by actively seeking information, the number of information sources, awareness of sharing information, and search content. The participants initially focused on symptoms and diseases, subsequently shifting to medication and rehabilitation. However, they paid little attention to the multidisciplinary and whole-course management of SMA, which is crucial for patient prognosis. In addition to medical personnel, search engines and patient organizations were the two most important information sources. Search engines were mostly used by patients with SMA and their family members for information access and supplementation. Before patients visited doctors, search engines were the first, or even only, method for accessing information among most respondents. After diagnosis, search engines became a supplementary source of information in addition to patient organizations during treatment and daily care. However, the role of search engines was limited, as they could not provide further support, such as information screening, evaluation, and application. After the patients were diagnosed, the importance of patient organizations increased and their credibility score was second only to that of the government and other authorities. Patient organizations were the most important sources of information for patients after diagnosis. Although patient organizations were powerful supplements for information search and evaluation abilities, their impact on application abilities remains unknown. New media, such as social media, short videos, and new health professional media, play an increasingly important role in the health information literacy of patients with SMA and their family members. Various new media platforms have played a comprehensive role in shortening the medical journey, communication, and rehabilitation guidance for psychological support. Owing to the intuitive presentation of content, short videos may play an important role in guiding patients to associate their symptoms with SMA and encourage them to quickly choose the appropriate hospital and department for medical treatment. In the diagnosis, treatment, and daily care stages, social media is the most widely and frequently used new media platform for information dissemination and activities among patients with SMA. Owing to the low production cost and intuitive characteristics of short videos, many patients and their families communicate on short video platforms, exchange information on their conditions, and obtain and provide psychological support. New information media has also become the first reliable source for patients to obtain information about new SMA drug research and medical insurance. Given their high credibility, new health media are important information evaluation tools throughout the course of the disease. Although infrequently used, new health media play an important role in the cross-identification and evaluation of other information sources. Most patients with SMA and their family members are young, so they are comfortable using all types of new media. Therefore, new media played an indispensable role in the daily information acquisition of the respondents. Our study has some limitations. The patients were sampled only from organizations for patients with SMA, and the average level of education was relatively high. Therefore, the results may not be representative of the actual health information literacy among patients with SMA in China. Additionally, we did not conduct an in-depth analysis; therefore, future research is required to analyze each SMA type. Conclusions The health information literacy of patients with SMA and their caregivers in China is poor and low abilities of health information search and evaluation are prominent. Increasing the degree of disease cognition in patients is helpful in improving medication compliance to enhance treatment effects. In addition to medical staff, search engines and patient organizations were found to be the most important information channels, with new media playing an increasingly important role. We thus call 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. Abbreviations SMA: spinal muscular atrophy SMN: survival motor neuron Declarations Ethics approval and consent to participate This study was approved by the Medical Ethics Committee of Children’s Hospital of Zhejiang University School of Medicine (2022-IRB-199), and the patients and their caregivers were all informed and provided their consent. All methods were performed in accordance with the ethical standards as laid down Declaration of Helsinki and its later amendments. Consent for publication A written and signed consent was obtained from both parents prior to submission. Availability of data and materials The data that support the findings of this study are available from the corresponding author upon reasonable request. Competing interests The authors declare that they have no competing interests. Funding This study was supported by the National Natural Science Foundation of China (82271735), the Key R&D Program of Zhejiang Province (2022C03167), and the Fundamental Research Fund for Central Universities (226-2023-00153). Authors’ contributions SSM developed the research project, designed the study, reviewed the manuscript, and secured funding. WRZ, MY, and YJF collected, analyzed, and interpreted the data. YY collected and interpreted the data. Both WRZ and YJF were major contributors in writing the manuscript. WL developed the research project and secured funding. FG supervised the study and reviewed the manuscript. 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Cite Share Download PDF Status: Published Journal Publication published 26 Aug, 2024 Read the published version in Italian Journal of Pediatrics → Version 1 posted Editorial decision: Major revision 01 Jul, 2024 Reviewers agreed at journal 26 May, 2024 Reviewers invited by journal 26 May, 2024 Editor assigned by journal 23 May, 2024 First submitted to journal 21 May, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4423889","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":306845739,"identity":"d78aaa68-3aab-4f8f-9f1d-fac90289e600","order_by":0,"name":"Weiran Zhang","email":"","orcid":"","institution":"Zhejiang University School of Medicine Children's Hospital","correspondingAuthor":false,"prefix":"","firstName":"Weiran","middleName":"","lastName":"Zhang","suffix":""},{"id":306845740,"identity":"e593fd88-3747-4087-a1bb-77d2013f81cd","order_by":1,"name":"Yijie Feng","email":"","orcid":"","institution":"Zhejiang University School of Medicine Children's Hospital","correspondingAuthor":false,"prefix":"","firstName":"Yijie","middleName":"","lastName":"Feng","suffix":""},{"id":306845741,"identity":"f7180540-9af2-4a91-8b22-9c8a1c9eee2d","order_by":2,"name":"Yue Yan","email":"","orcid":"","institution":"Zhejiang University School of Medicine Children's Hospital Hubin Campus","correspondingAuthor":false,"prefix":"","firstName":"Yue","middleName":"","lastName":"Yan","suffix":""},{"id":306845742,"identity":"2e1938c3-2f92-4363-a6f0-9c940a83060c","order_by":3,"name":"Mei Yao","email":"","orcid":"","institution":"Zhejiang University School of Medicine Children's Hospital Hubin Campus","correspondingAuthor":false,"prefix":"","firstName":"Mei","middleName":"","lastName":"Yao","suffix":""},{"id":306845743,"identity":"877a1bcd-a4ca-4071-be27-5ae48a6479fd","order_by":4,"name":"Feng Gao","email":"","orcid":"","institution":"Zhejiang University School of Medicine Children's Hospital Hubin Campus","correspondingAuthor":false,"prefix":"","firstName":"Feng","middleName":"","lastName":"Gao","suffix":""},{"id":306845744,"identity":"4ab8b597-5e8d-45cc-b8f6-4839b53aee97","order_by":5,"name":"Wei Lin","email":"","orcid":"","institution":"Zhejiang University","correspondingAuthor":false,"prefix":"","firstName":"Wei","middleName":"","lastName":"Lin","suffix":""},{"id":306845745,"identity":"33714afb-1668-48e5-87e7-f6d2a2b19182","order_by":6,"name":"Shanshan Mao","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA3UlEQVRIiWNgGAWjYBACfv7G9h8JBjVyDAwHgFw2IrRIzjh8QOJDxTFj4rUYNKQlSM44w5zYAOYSpYXhjIExbxtb+vzGMwYMH8oOM/DPbsCvxZy5xyCZt00mt7HhjAHjjHOHGSTuHMCvxRKo8jDQltxmoHXMvG2HGQwkEgg47ECOYTNvG3M6G0jLX+K0pCUzAr2fwAPSwkiMFmAgH2MABrLhDIZjBQd7zqXzSNwgoAUYlW0MwKiUl59xeOODH2XWcvwzCGhBAIkD4MjkIVY9yL4GEhSPglEwCkbBiAIAnQFGmpaAzZwAAAAASUVORK5CYII=","orcid":"https://orcid.org/0000-0001-6736-1407","institution":"Zhejiang University School of Medicine Children's Hospital","correspondingAuthor":true,"prefix":"","firstName":"Shanshan","middleName":"","lastName":"Mao","suffix":""}],"badges":[],"createdAt":"2024-05-15 08:53:22","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4423889/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4423889/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s13052-024-01723-9","type":"published","date":"2024-08-26T15:56:57+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":63820784,"identity":"57ec9da7-e3ec-4548-bbd8-2ae452f96f2d","added_by":"auto","created_at":"2024-09-02 16:07:49","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":536851,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4423889/v1/ca6a6a39-670d-4c9e-8a77-c4165941fa31.pdf"}],"financialInterests":"","formattedTitle":"Health information literacy among children with spinal muscular atrophy and their caregivers in China","fulltext":[{"header":"Background","content":"\u003cp\u003eSpinal muscular atrophy (SMA) is a severe neurodegenerative condition caused by recessive mutations in the survival motor neuron (SMN) 1 gene resulting in insufficient SMN proteins. SMA is characterized by progressive muscle weakness and atrophy, primarily in the proximal limbs [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. With disease progression, SMA often involves multisystem physical dysfunction, such as respiratory, digestive, cardiovascular, and motor disorders, which significantly reduces patients\u0026rsquo; quality of life [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. As with other rare disorders, patients with SMA often experience delayed diagnoses [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. However, unlike for many other orphan diseases, effective treatments are available for SMA. Disease-modifying treatments based on antisense oligonucleotides, gene transfer, and splicing modifier molecules improve prognosis [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. The representative drugs, nusinersen and risdiplam, have received approval for SMA treatment in China. The advent of new therapies has increased the need for early SMA diagnosis [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Previous studies have shown a significant delay from the onset of the first clinical signs to definitive diagnosis. Early treatment administration results in greater treatment benefits [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Thus, early diagnosis is critical to improve patient prognosis. The diagnosis and treatment of SMA in China have entered a new era, shifting from having no available medicine to providing accurate diagnosis, treatment, management, and access to medication. Despite the typical clinical features and ease of performing genetic analyses, a recent review of the diagnostic process for SMA reported problems and frequent delays between the onset of clinical signs and diagnosis for all types of SMA [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePatients affected by rare diseases are dispersed worldwide and face a variety of challenges, including lack of specialized care, delays in diagnosis, negative social consequences, and other psychosocial burdens [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Patients and their families can overcome this using technology to access information and connect with other patients online [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Advances in information technology and communication are creating cultural shifts and changing how people develop expertise. These trends have important implications for healthcare systems, being particularly relevant for empowering patients dealing with rare diseases.\u003c/p\u003e \u003cp\u003eHealth literacy is the ability to access, understand, evaluate, and use essential health information to make basic health decisions [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. The World Health Organization considers health literacy an important topic and one of the greatest determinants of health; hence, it suggests monitoring and coordinating strategic plans in terms of health promotion in societies [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. A study conducted by the USA Center for Health Care Strategies indicated that people with limited health literacy are less likely to understand the written and verbal information provided by health experts and thus have poor health conditions [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Health information literacy emphasizes a range of information abilities, including recognizing health information needs; identifying possible sources of information and using them to retrieve relevant information; assessing the quality and application of information in a specific situation; and analyzing, understanding, and using information to make scientific health decisions. Health information literacy combines health and information literacy and emphasizes the human ability to discover and use health-related information [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Amid the current information revolution, a lack of information is rather unlikely; nonetheless, this is often a reality for people with rare orphan diseases [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. At present, public health information literacy surveys conducted in China primarily focus on common chronic diseases, such as diabetes, hypertension, coronary heart disease, and stroke; however, surveys on the health information literacy of patients with rare diseases, including SMA, in China have not been conducted [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. A study on the health literacy and self-efficacy levels of parents of patients with SMA showed that the parents had low health literacy and self-efficacy levels. A positive significant relationship exists between health literacy and self-efficacy [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Therefore, this study examines the health information literacy of patients with SMA in China to promote the early diagnosis of SMA and identify effective approaches for the survival of patients with SMA in China.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eStudy design\u003c/p\u003e \u003cp\u003eThis cross-sectional study on the health literacy of patients with SMA was conducted based on two aspects: qualitative interviews with the caregivers of patients with SMA and a quantitative questionnaire survey administered to children with SMA and their caregivers. Patients and their caregivers were recruited from December 2021 to December 2023 in Children\u0026rsquo;s Hospital of Zhejiang University School of Medicine. This study was approved by the Medical Ethics Committee of the Children\u0026rsquo;s Hospital of Zhejiang University School of Medicine (2022-IRB-199). The patients and their caregivers were informed and provided their consent.\u003c/p\u003e \u003cp\u003eInterview design\u003c/p\u003e \u003cp\u003eThrough sample size estimation, the minimum sample size with clinical significance for the interview was 10. Taking the difficulty of actual operation into account, we finally selected the caregivers of 10 patients with SMA to participate in the interview. The interviews were conducted by two trained neurologists specializing in SMA, one responsible for communicating with the patients and the other for taking real-time notes and supplementing questions via a telephone or face-to-face communication. The inclusion criteria and key points of the interview are listed in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eInclusion criteria and key points of the interview with caregivers and patients with SMA\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eInclusion criterion\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBoth male and female patients\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePre-school, primary, middle, and high school, university, and working patients\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDisease type\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatients with SMA types I\u0026ndash;IV\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDisease duration\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatients whose disease duration was less or more than 1 year\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWhether they are members of a patient organization\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatients or patients\u0026rsquo; family members who have joined or not joined a patient organization\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eKey points of the interview\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eBefore diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1. Initial symptoms of disease onset, information on the first medical details, including the visit time, hospital, department, and initial causes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2. Referral status and reasons\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3. Understanding of SMA\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"8\" rowspan=\"9\"\u003e \u003cp\u003eAt diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1. Inspection and diagnosis process\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2. Doctor communication situation\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3. Treatment situation and the causes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4. Further understanding of SMA\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5. Proactive searching for SMA-related information\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6. Patient organization joining status\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7. Information channels\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8. Specific information content and form of each channel\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9. Unmet needs and expectations\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"5\" rowspan=\"6\"\u003e \u003cp\u003eAfter diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1. Treatment situation and the causes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2. Daily care situation\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3. Reception and active search of SMA-related information\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4. Information channels\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5. Specific information content and form of each channel\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6. Unmet needs and expectations\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eQuestionnaire survey\u003c/p\u003e \u003cp\u003eAfter the interviews, a comprehensive and acceptable online questionnaire survey was distributed to the children with SMA and their caregivers. The inclusion criterion for patients was a diagnosis of 5qSMA by genetic testing and they had to be able to clearly express their views and thoughts. To avoid bias as much as possible, participants whose family members worked in advertising, magazines, TV stations and other media industries, pharmacies, and hospitals and drug production and sales-related industries were excluded.\u003c/p\u003e \u003cp\u003eThe questionnaire consisted of three parts: (1) demographic and background information, including age, marital status, academic status/years, employment status, family income, and field of study; (2) the interval between symptom onset and first hospital visit, mean time between symptom onset and diagnosis, and types of medical investigations conducted for diagnosis; and (3) health literacy measuring four main dimensions, namely recognizing health information needs, retrieving relevant information, assessing the quality of information, and applying information. Responses were rated on a five-point Likert scale (1\u0026thinsp;=\u0026thinsp;no knowledge; 5\u0026thinsp;=\u0026thinsp;advanced knowledge). Finally, the total score was calculated by aggregating the scores of all dimensions (ranging from 0 to 100) and dividing them by the number of dimensions.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eSPSS analytical software, version 22 (IBM Corporation, Armonk, NY, USA), was used for the statistical data analysis. For the qualitative data analysis, frequencies and percentages were used. The impact of different demographic data on the scores of the four aspects of health literacy was analyzed through an independent sample \u003cem\u003et\u003c/em\u003e-test.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eThe interview results of 10 patients with SMA and their caregivers suggested that they had experienced varying degrees of diagnostic delays and had to travel to multiple hospitals before finally being diagnosed with SMA. Before diagnosis, patients\u0026rsquo; caregivers did not know which channels to use to learn about the disease, while after diagnosis, they joined a patient organization and learned about SMA through social media and tweets, among others. Before the availability of SMA disease-modifying treatment drugs in China, parents and caregivers did not pay much attention to the disease. When drugs became available, they learnt to use various social media and tools to acquire more diagnosis and treatment information.\u003c/p\u003e \u003cp\u003eFor the questionnaire survey, a total of 166 questionnaires were collected; 145 valid questionnaires were included in the final analysis, comprising patients from 24 Chinese provinces. Participants\u0026rsquo; characteristics are summarized in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e. The average age of the patients was 81.9 months (6.8 years), and 70% of them had a disease course of more than 2 years. In terms of clinical classification, most participants had type II SMA. The basic conditions of patients with type I SMA differed significantly from those of patients with types II and III SMA who were characterized by younger age, shorter disease duration, and poorer medical insurance. Of the participants, 97% were family members of patients, most of whom were women aged approximately 35 years. They had a high level of education, with 50% holding postgraduate degrees.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographic characteristics of caregivers and patients with SMA\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eCharacteristics of caregivers (N\u0026thinsp;=\u0026thinsp;145)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003en (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCaregivers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eParents\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e140 (97)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNon-parents\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40 (28)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e105 (72)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge (years)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;30\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (12)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e30\u0026ndash;45\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e96 (66)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e45\u0026ndash;50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e30 (21)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ge;\u0026thinsp;50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAnnual family income (thousand RMB)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026lt;100\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e87 (60)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e100\u0026ndash;200\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e42 (29)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e200\u0026ndash;300\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;300\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEducational level\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBelow high school diploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e77 (53)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHigh school diploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e25 (17)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBachelor\u0026rsquo;s degree or above\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e43 (30)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eCharacteristics of patients (N\u0026thinsp;=\u0026thinsp;145)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003en (%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge (years)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e19 (13)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u0026ndash;5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e43 (30)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u0026ndash;12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e66 (46)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ge;\u0026thinsp;12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (12)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSMA type\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eⅠ\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e20 (14)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eⅡ\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e86 (59)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eⅢ\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e39 (27)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDisease duration\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;12M\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e19 (13)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12\u0026ndash;24M\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e25 (17)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e24\u0026ndash;60M\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e43 (30)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ge;\u0026thinsp;60M\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e58 (40)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInsurance status\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSocial insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e104 (72)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBusiness insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28 (19)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e33 (23)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe characteristics of the caregivers of patients with SMA before diagnosis are shown in Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e. The average score of the participants\u0026rsquo; awareness of motor milestones was 51, with nearly one-third being completely unaware of the need to pay attention to their children\u0026rsquo;s motor milestones at different growth stages. The mean time from the first symptom onset to first hospital visit was 4.8 months, including 1.5 months for patients with type I SMA, 3.9 months for patients with type II SMA, and up to 8.3 months for patients with type III SMA. For family members of patients with SMA with motor milestone awareness scores\u0026thinsp;\u0026lt;\u0026thinsp;60, the average interval from symptom onset to medical consultation was 4.1 months, whereas it was 2.8 months for those with scores\u0026thinsp;\u0026gt;\u0026thinsp;60. When patients had symptoms that were not yet diagnosed, 39% did not conduct any information inquiry. The participants with awareness of information reported having limited information channels, primarily from Internet search engines. The most prominent feature of this stage was the low cognition of information, which was an obstacle to information inquiry.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCharacteristics of patients with SMA and their caregivers before diagnosis\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAwareness of motor milestones for children aged 0\u0026ndash;6Y (N\u0026thinsp;=\u0026thinsp;145, mean)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo knowledge (1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e29%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLittle knowledge (2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e20%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSome knowledge (3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e30%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGood knowledge (4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e10%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAdvanced knowledge (5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e11%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInterval between the first symptom and first consultation\u003c/p\u003e \u003cp\u003e(months; N\u0026thinsp;=\u0026thinsp;145, mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e4.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSMA I (N\u0026thinsp;=\u0026thinsp;20)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e1.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSMA II (N\u0026thinsp;=\u0026thinsp;86)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e3.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSMA III (N\u0026thinsp;=\u0026thinsp;39)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e8.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAwareness of motor milestones affects the first consultation for SMA I and II (N\u0026thinsp;=\u0026thinsp;106, mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAwareness of motor milestones for children aged 0\u0026ndash;6Y\u003c/p\u003e \u003cp\u003e\u0026lt;\u0026thinsp;60\u003c/p\u003e \u003cp\u003e\u0026ge;\u0026thinsp;60\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e53\u003c/p\u003e \u003cp\u003e53\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInterval between the first symptom and first consultation (months)\u003c/p\u003e \u003cp\u003e\u0026lt;\u0026thinsp;60\u003c/p\u003e \u003cp\u003e\u0026ge;\u0026thinsp;60\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e4.1\u003c/p\u003e \u003cp\u003e2.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInterval between the onset of clinical signs and diagnosis\u003c/p\u003e \u003cp\u003e(months; N\u0026thinsp;=\u0026thinsp;145, mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePatients from provincial capital city (N\u0026thinsp;=\u0026thinsp;36)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e10.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePatients from non-provincial capital city (N\u0026thinsp;=\u0026thinsp;108)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e7.0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSMA type\u003c/p\u003e \u003cp\u003eI (N\u0026thinsp;=\u0026thinsp;20)\u003c/p\u003e \u003cp\u003eII (N\u0026thinsp;=\u0026thinsp;86)\u003c/p\u003e \u003cp\u003eIII (N\u0026thinsp;=\u0026thinsp;39)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e12.0\u003c/p\u003e \u003cp\u003e3.8\u003c/p\u003e \u003cp\u003e8.6\u003c/p\u003e \u003cp\u003e19.0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNumber of doctors visited (N\u0026thinsp;=\u0026thinsp;145, mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePatients from provincial capital city (N\u0026thinsp;=\u0026thinsp;36)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e3.1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePatients from non-provincial capital city (N\u0026thinsp;=\u0026thinsp;108)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e2.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSMA type\u003c/p\u003e \u003cp\u003eI (N\u0026thinsp;=\u0026thinsp;20)\u003c/p\u003e \u003cp\u003eII (N\u0026thinsp;=\u0026thinsp;86)\u003c/p\u003e \u003cp\u003eIII (N\u0026thinsp;=\u0026thinsp;39)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e3.2\u003c/p\u003e \u003cp\u003e3.4\u003c/p\u003e \u003cp\u003e2.9\u003c/p\u003e \u003cp\u003e3.4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe mean time from the first consultation to diagnosis was 6 months and the average number of referrals was 3.1 months. Almost all patients sought treatment from the wrong department, such as rehabilitation, growth, and development, leading to different degrees of misdiagnosis. New media platforms, such as short videos, are intuitive and play an increasingly important role in helping some patients shorten their diagnosis time. The average time from symptom onset to diagnosis was 7 months and the average number of referrals was 2.9 for patients from provincial capital cities. Conversely, the average time from symptom onset to diagnosis was 12 months, and the average number of referrals was 3.2 for patients from non-provincial capital cities. For patients with good health literacy, the mean time from the first consultation to diagnosis was 3.4 months, and the average time from the first consultation to diagnosis was 3.3 months.\u003c/p\u003e \u003cp\u003eHealth literacy among the caregivers of patients with SMA after diagnosis is summarized in Tables\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e and \u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e. The cognition of health information of patients with SMA and their family members improved after diagnosis. However, information channels remained singular. Many patients and their family members expressed difficulties with information queries, screening, and evaluation, and most joined patient groups. Rehabilitation was the main treatment for patients with SMA, and only 23% received disease-modifying therapy. Approximately one-third of the patients did not receive any treatment.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eHealth information literacy of patients with SMA and their caregivers after diagnosis (N\u0026thinsp;=\u0026thinsp;145, mean)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eHealth literacy variables\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eScore\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealth information\u003c/p\u003e \u003cp\u003ecognition (score: 90)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIt is very important to be informed about SMA.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e92\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eI hope to get SMA-related information from a variety of sources.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e93\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eI can express what SMA health information I need.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e84\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealth information search (score: 57)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eI know where to get SMA-related health information.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e81\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIt is difficult to obtain SMA-related health information from print media.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e45\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIt is difficult to obtain SMA-related health information from new media.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e54\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIt is difficult to obtain SMA-related health information from radio and television.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e49\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealth information evaluation (score: 61)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIt is easy to evaluate the reliability of SMA-related health information in print media.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e62\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIt is easy to evaluate the reliability of SMA-related health information in new media.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e66\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSMA-related health information is often difficult to understand.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e53\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eI do not know whom to trust when talking to others about SMA-related issues.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e60\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIt is easy to evaluate the reliability of SMA-related health information on radio and television.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e62\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealth information application (score: 84)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eI will apply the SMA-related health information I have obtained for my benefit and the benefit of those around me.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e81\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eI am willing to share what I know about SMA health information with others.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e88\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eHealth information literacy scores of patients with SMA (N\u0026thinsp;=\u0026thinsp;145, mean)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"6\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" morerows=\"1\" nameend=\"c2\" namest=\"c1\" rowspan=\"2\"\u003e \u003cp\u003eHealth literacy variables\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eScore\u0026thinsp;\u0026lt;\u0026thinsp;65\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003e65\u0026ndash;75\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eScore\u0026thinsp;\u0026gt;\u0026thinsp;75\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e(N\u0026thinsp;=\u0026thinsp;145)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003e(N\u0026thinsp;=\u0026thinsp;35,\u003c/p\u003e \u003cp\u003e24%)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003e(N\u0026thinsp;=\u0026thinsp;84, 58%)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003e(N\u0026thinsp;=\u0026thinsp;26, 18%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eAwareness of motor milestones for children aged 0\u0026ndash;6Y\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e51\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e52\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e58\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eInterval between the onset of clinical signs and the first consultation in months\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4.8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4.4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5.3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e3.4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eInterval between the onset of clinical signs and diagnosis in months\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6.0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8.9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5.6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e3.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eNumber of doctors visited\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3.1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3.6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e2.9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e3.2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"6\" rowspan=\"7\"\u003e \u003cp\u003eCurrent treatment status (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRehabilitation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e47\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e46\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e46\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e50\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNusinersen\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSalbutamol\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTraditional Chinese medicine\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRisdiplam\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e32\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e19\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eMost participants had low health information literacy, with an average score of 69. The two aspects with high scores were health information cognition and application, with scores of 90 and 84, respectively. The abilities to evaluate (61) and search for health information (57) were low. As the respondents were mostly from organizations for patients with SMA, the average level of education was high. With the introduction of the world\u0026rsquo;s first SMA disease-modifying drug into medical insurance and drug accessibility improvement, more patients with lower educational levels can seek treatment in hospitals. Therefore, the actual health information literacy level of patients with SMA and their families may be lower than the results of this survey.\u003c/p\u003e \u003cp\u003eThe score for health information cognition was 90, the highest among the four dimensions of health information literacy. Respondents\u0026rsquo; information needs for new drug research and development, medical insurance policies, multidisciplinary management, rehabilitation nursing, and other aspects were constantly changing and updated. The number of channels mastered by the respondents increased to 3.8. However, health information search literacy remained the lowest, with a score of 57. Although medical staff were considered the most professional and reliable sources of SMA information, patient organizations (67%) and search engines (52%) were the two most frequently used sources. Participants were concerned about various aspects of treatment, including drug development (89%), rehabilitation methods (82%), institutions (68%), medical costs (81%), and welfare policies (76%).\u003c/p\u003e \u003cp\u003eThe average score for health information evaluation was 61, indicating that the participants found it difficult to judge information reliability (62 for print media, 66 for new media, 62 for radio and television), understand relevant professional terms (53), and judge the credibility of information sources (60).\u003c/p\u003e \u003cp\u003eHealth information application scored 84, indicating a strong desire to share information (88 points). Additionally, the ability to apply the acquired health information in practice improved (81). Multidisciplinary, whole-course management and the daily care of patients with SMA are closely related to their quality of life, are relatively complex, and rely on the collaboration of multiple disciplines, such as neurology, orthopedics, respiratory, rehabilitation, nutrition, acute care, and home care. Respiratory management is integral for many patients with type I SMA. Most patients with types II and III SMA face nutrition and dietary problems. The information barriers they face are prominent, such as worrying about the quality of information (61%), information being difficult to understand (42%), the search for information requiring significant energy (34%), and feeling frustrated when searching for information (34%). In addition, the normal demographic data had no significant impact on the scores of the four aspects of health literacy: cognition, search, evaluation, and application (all \u003cem\u003eP\u003c/em\u003e\u0026thinsp;\u0026gt;\u0026thinsp;0.05).\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study was the first to consider the health information literacy of patients with SMA in China. It revealed that there exists a diagnostic delay in SMA and poor health literacy among patients with SMA and their caregivers.\u003c/p\u003e \u003cp\u003eSMA is a neuromuscular disease with high morbidity and mortality rates, particularly types I and II. Studies showed a significant delay from the onset of the initial symptoms to a definitive diagnosis [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. In our study, the mean time from the first symptom onset to first hospital visit was long, especially for patients with type III SMA. Early diagnosis is critical to improve patient prognosis. The time window for SMA diagnosis can be shortened if parents and caregivers become aware of the early signs of abnormal growth and development in neonates through scientific popularization or a life-cycle health detection system [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Furthermore, during the stage of symptom onset and seeking medical treatment, respondents with a high awareness of motor milestones in children aged 0\u0026ndash;6 years were more likely to seek medical treatment and had a shorter time to diagnosis. Moreover, an Internet-based registry platform and collaboration networks could be established and neonatal and carrier screening for SMA could be performed to reduce the diagnostic time window.\u003c/p\u003e \u003cp\u003eHealth information literacy affects people\u0026rsquo;s ability to accurately search for and use health information and adopt healthier behaviors. Low health literacy has become a global public health concern. At the beginning of the 21st century, the USA implemented health information literacy education programs [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. The first European survey on health literacy found that 47% of the population in eight European countries had low health literacy [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. Research on Isfahan showed that the average health literacy score of participants was poor or marginal and they therefore required more explanation from medical staff to understand and implement the health and medical instructions [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. In China, health literacy has been receiving attention from scholars since 2012 and survey results show that approximately 91.2% of Chinese residents have low health literacy [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. According to our results, the overall level of health information literacy of patients with SMA and their families was low. They had a high level of health information literacy for cognition and application, with low levels for search and evaluation. The health information literacy of patients with SMA and their family members improved significantly from the onset of symptoms to diagnosis, treatment, and daily disease management. This was primarily reflected by actively seeking information, the number of information sources, awareness of sharing information, and search content. The participants initially focused on symptoms and diseases, subsequently shifting to medication and rehabilitation. However, they paid little attention to the multidisciplinary and whole-course management of SMA, which is crucial for patient prognosis.\u003c/p\u003e \u003cp\u003eIn addition to medical personnel, search engines and patient organizations were the two most important information sources. Search engines were mostly used by patients with SMA and their family members for information access and supplementation. Before patients visited doctors, search engines were the first, or even only, method for accessing information among most respondents. After diagnosis, search engines became a supplementary source of information in addition to patient organizations during treatment and daily care. However, the role of search engines was limited, as they could not provide further support, such as information screening, evaluation, and application. After the patients were diagnosed, the importance of patient organizations increased and their credibility score was second only to that of the government and other authorities. Patient organizations were the most important sources of information for patients after diagnosis. Although patient organizations were powerful supplements for information search and evaluation abilities, their impact on application abilities remains unknown. New media, such as social media, short videos, and new health professional media, play an increasingly important role in the health information literacy of patients with SMA and their family members. Various new media platforms have played a comprehensive role in shortening the medical journey, communication, and rehabilitation guidance for psychological support. Owing to the intuitive presentation of content, short videos may play an important role in guiding patients to associate their symptoms with SMA and encourage them to quickly choose the appropriate hospital and department for medical treatment. In the diagnosis, treatment, and daily care stages, social media is the most widely and frequently used new media platform for information dissemination and activities among patients with SMA. Owing to the low production cost and intuitive characteristics of short videos, many patients and their families communicate on short video platforms, exchange information on their conditions, and obtain and provide psychological support. New information media has also become the first reliable source for patients to obtain information about new SMA drug research and medical insurance. Given their high credibility, new health media are important information evaluation tools throughout the course of the disease. Although infrequently used, new health media play an important role in the cross-identification and evaluation of other information sources. Most patients with SMA and their family members are young, so they are comfortable using all types of new media. Therefore, new media played an indispensable role in the daily information acquisition of the respondents.\u003c/p\u003e \u003cp\u003eOur study has some limitations. The patients were sampled only from organizations for patients with SMA, and the average level of education was relatively high. Therefore, the results may not be representative of the actual health information literacy among patients with SMA in China. Additionally, we did not conduct an in-depth analysis; therefore, future research is required to analyze each SMA type.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eThe health information literacy of patients with SMA and their caregivers in China is poor and low abilities of health information search and evaluation are prominent. Increasing the degree of disease cognition in patients is helpful in improving medication compliance to enhance treatment effects. In addition to medical staff, search engines and patient organizations were found to be the most important information channels, with new media playing an increasingly important role. We thus call 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.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eSMA: spinal muscular atrophy\u003c/p\u003e\n\u003cp\u003eSMN: survival motor neuron\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics approval and consent to participate\u003c/p\u003e\n\u003cp\u003eThis study was approved by the Medical Ethics Committee of Children\u0026rsquo;s Hospital of Zhejiang University School of Medicine (2022-IRB-199), and the patients and their caregivers were all informed and provided their consent. All methods were performed in accordance with the ethical standards as laid down Declaration of Helsinki and its later amendments.\u003c/p\u003e\n\u003cp\u003eConsent for publication\u003c/p\u003e\n\u003cp\u003eA written and signed consent was obtained from both parents prior to submission.\u003c/p\u003e\n\u003cp\u003eAvailability of data and materials\u003c/p\u003e\n\u003cp\u003eThe data that support the findings of this study are available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003eCompeting interests\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003eFunding\u003c/p\u003e\n\u003cp\u003eThis study was supported by the National Natural Science Foundation of China (82271735), the Key R\u0026amp;D Program of Zhejiang Province (2022C03167), and the Fundamental Research Fund for Central Universities (226-2023-00153).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAuthors\u0026rsquo; contributions\u003c/p\u003e\n\u003cp\u003eSSM\u0026nbsp;developed the research project, designed the study,\u0026nbsp;reviewed the manuscript,\u0026nbsp;and secured funding.\u0026nbsp;WRZ, MY, and YJF\u0026nbsp;collected, analyzed, and interpreted the data.\u0026nbsp;YY collected and\u0026nbsp;interpreted\u0026nbsp;the data.\u0026nbsp;Both\u0026nbsp;WRZ\u0026nbsp;and\u0026nbsp;YJF\u0026nbsp;were major contributors in writing the manuscript.\u0026nbsp;WL\u0026nbsp;developed the research project\u0026nbsp;and\u0026nbsp;secured funding. FG supervised the study and reviewed the manuscript.\u0026nbsp;All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003eAcknowledgements\u003c/p\u003e\n\u003cp\u003eThe authors thank all the patients involved in this study and their guardians.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eFeldk\u0026ouml;tter M, Schwarzer V, Wirth R, Wienker TF, Wirth B. Quantitative analyses of SMN1 and SMN2 based on real-time LightCycler PCR: fast and highly reliable carrier testing and prediction of severity of spinal muscular atrophy. 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Health Educ China. 2015;31:99\u0026ndash;103.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":true,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"italian-journal-of-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"itjp","sideBox":"Learn more about [Italian Journal of Pediatrics](http://ijponline.biomedcentral.com)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/ITJP/default.aspx","title":"Italian Journal of Pediatrics","twitterHandle":"@BioMedCentral","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"spinal muscular atrophy, health information literacy, China, children","lastPublishedDoi":"10.21203/rs.3.rs-4423889/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4423889/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eSpinal muscular atrophy (SMA) is an autosomal recessive motor neuron disease that leads to multiple organ dysfunction. The advent of disease-modifying treatments makes the early diagnosis of SMA critical. Health information literacy is vital for obtaining, understanding, screening, and using health information. Considering the importance of early diagnosis and the challenges in obtaining accurate information on patients with SMA, this study assesses health information literacy among children with SMA and their caregivers in China.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eInterviews with the caregivers of 10 patients with SMA were conducted by neurologists specializing in SMA. A questionnaire for evaluating the level of health information literacy was further developed among 145 children with SMA and their caregivers. Parameters, such as the age at the onset of the first symptom and time from recognition of the first symptom to diagnosis, were examined. Health information literacy was measured using four dimensions: cognition, search, evaluation, and application.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThe average time from the first symptom to first medical consultation was 4.8 months, and from the first symptom to diagnosis was 10.8 months. Thirty-five (24%) patients had poor health information literacy, while 26 (18%) had high health information literacy. The overall score for health information literacy was 69; the scores for health information cognition and application were 90 and 84, respectively. The scores for evaluation (61) and search (57) were low. Medical personnel were considered the most professional and credible sources of information. Additionally, search engines and patient organizations were the other two most important sources of health literacy.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003ePatients with SMA and their caregivers had low levels of health information literacy. Cognition and application were high, whereas evaluation and search were poor. As such, 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.\u003c/p\u003e","manuscriptTitle":"Health information literacy among children with spinal muscular atrophy and their caregivers in China","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-06-06 18:50:05","doi":"10.21203/rs.3.rs-4423889/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major revision","date":"2024-07-01T04:49:14+00:00","index":"","fulltext":""},{"type":"reviewerAgreed","content":"","date":"2024-05-26T17:50:38+00:00","index":0,"fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-05-26T09:49:45+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-05-23T06:11:23+00:00","index":"","fulltext":""},{"type":"submitted","content":"Italian Journal of Pediatrics","date":"2024-05-21T04:10:30+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"italian-journal-of-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"itjp","sideBox":"Learn more about [Italian Journal of Pediatrics](http://ijponline.biomedcentral.com)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/ITJP/default.aspx","title":"Italian Journal of Pediatrics","twitterHandle":"@BioMedCentral","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"dcc120b8-e3f2-4e49-bca3-ffaab27f75a4","owner":[],"postedDate":"June 6th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-09-02T15:59:09+00:00","versionOfRecord":{"articleIdentity":"rs-4423889","link":"https://doi.org/10.1186/s13052-024-01723-9","journal":{"identity":"italian-journal-of-pediatrics","isVorOnly":false,"title":"Italian Journal of Pediatrics"},"publishedOn":"2024-08-26 15:56:57","publishedOnDateReadable":"August 26th, 2024"},"versionCreatedAt":"2024-06-06 18:50:05","video":"","vorDoi":"10.1186/s13052-024-01723-9","vorDoiUrl":"https://doi.org/10.1186/s13052-024-01723-9","workflowStages":[]},"version":"v1","identity":"rs-4423889","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4423889","identity":"rs-4423889","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}