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As artificial intelligence (AI) chatbots become an increasingly common source of quick medical guidance, it is important to understand whether their responses meet users' needs and support well-informed health decisions. Yet, existing evaluation frameworks rely primarily on expert-defined evaluation dimensions that have not been empirically validated with end users. It remains unclear whether these frameworks capture the criteria people actually use when judging a response to be useful, trustworthy, and satisfying, or which evaluation dimensions matter most to users in practice. This study empirically examined how commonly used dimensions such as Accuracy and Comprehensiveness shape caregivers' satisfaction with AI-generated answers to pediatric health questions. We further investigated what expectations and communication needs may be overlooked by current evaluation frameworks. We conducted a mixed methods vignette survey with 191 caregivers recruited through Prolific. Participants evaluated GPT-4o responses to a set of clinician-approved pediatric health questions across 8 dimensions and rated overall satisfaction. We quantified the influence of each dimension on overall satisfaction using a Cumulative Link Mixed Model and performed an inductive thematic analysis of open-ended comments to identify gaps in established frameworks. A total of 191 caregivers evaluated 1146 chatbot responses. Initially, caregivers rated Accuracy and Credibility as the most important dimensions. However, Cumulative Link Mixed Model analysis identified Usefulness as the strongest driver of overall satisfaction (odds ratio [OR] 2.53, 95% CI 1.95-3.27; P<.001), followed by Thoroughness (OR 2.15, 95% CI 1.69-2.73; P<.001). Comprehensiveness did not significantly influence satisfaction (OR 1.05, 95% CI 0.82-1.33; P=.71). Qualitative feedback helped explain this: participants frequently criticized responses as \"too long\" and preferred concise, actionable guidance. Empathy/Warmth was significantly associated with overall satisfaction (OR 1.48, 95% CI 1.27-1.72; P<.001) but elicited polarized reactions (Van der Eijk agreement μ=0.38): some caregivers valued emotional support, while others found AI-generated empathy insincere and undermined credibility. Medical disclaimers increased trust in higher-risk situations but reduced confidence in lower-risk scenarios. Existing evaluation frameworks only partially capture how caregivers assess medical chatbots. Caregivers valued actionable guidance, credible references, and clear reasoning over lengthy, exhaustive detail. Rather than passively receiving dense information, they preferred an interactive style in which the chatbot proactively proposed follow-up suggestions, helping them steer the conversation toward their specific needs. Reactions to empathetic language and medical disclaimers were context-dependent: features that built trust in some situations could seem insincere, excessive, or unnecessary in others. These findings suggest that future medical chatbots should move beyond one-size-fits-all communication and adapt to individual users' situations, preferences, and information needs. Evaluation protocols should likewise assess not only whether chatbot responses are accurate and comprehensive but also whether they are actionable, appropriately toned, and responsive to users' evolving needs over the course of a conversation.

Anterior cervical hypertrichosis, also known as hairy throat syndrome, is a rare and typically benign condition characterized by a well-defined patch of terminal hair on the front of the neck. Although it is often an isolated finding, it may sometimes be associated with neurological or developmental abnormalities, which makes clinical awareness important. We report the case of a healthy 4-year-old girl who presented with congenital localized excessive hair growth over the anterior cervical region. The patch had remained unchanged since birth and was not associated with any skin changes or systemic symptoms. Her physical and neurological examinations were normal, and imaging studies ruled out underlying spinal or soft tissue anomalies. Although she had a resolved history of ptosis and was under follow-up for hypermetropia, no other abnormalities were identified. A sibling history of spina bifida prompted a more detailed evaluation, which returned normal results. This case highlights the importance of recognizing anterior cervical hypertrichosis as a rare but distinct clinical entity. Recognition of this benign entity is important to guide appropriate evaluation, avoid excessive investigations, and reduce caregiver anxiety.

Patients with mucopolysaccharidosis (MPS) appear to have an increased risk of developing dental disease. This study aimed to evaluate the status of dental caries and dental anomalies among Chinese patients with different types of MPS. This retrospective study analyzed a consecutive cohort of 102 pediatric patients with MPS who visited the Department of Stomatology at the Capital Center for Children's Health between August 2010 and August 2025. Eligible patients were defined as those with a confirmed diagnosis of MPS who were aged ≤14 years at the time of their dental visit and had complete dental examination records available. Dental caries and anomalies were assessed through clinical records and radiographic data. Dental caries were observed in 55.9% (57/102) of patients, and no statistically significant difference was observed across the MPS subtypes (P=.72). Deep dentinal caries (d4-6mft) were observed in 40.2% (41/102) of the participants and contributed most to the total decayed, missing, and filled teeth index score. The overall prevalence of dental anomalies was 32.4% (33/102), with a statistically significant difference among MPS subtypes (P=.005). Patients with MPS type IV had a significantly higher risk of dental anomalies compared to those with MPS type II (odds ratio 6.32, 95% CI 1.55-28.28; P=.01), after adjusting for age and gender. The prevalence of dental anomalies differed significantly across MPS subtypes, while that of dental caries did not. These findings emphasize the need for early, targeted preventive care and tailored dental interventions to improve oral health outcomes in this population.

Infants with complex heart disease often have delayed development, learning difficulties, and mental health problems as they grow older. Their parents and other caregivers engage in online health information-seeking behavior to understand and support their children's health and development. In this study, we analyze the presence, nature, and presentation of information about neurodevelopment on the websites of congenital cardiac surgical programs in the United States. We used a mixed methods approach, specifically a convergent design. We correlated the presence and presentation of information about neurodevelopment on each program's website with state-level and program-specific factors extracted from multiple publicly available databases. Quantitative analysis methods included descriptive analyses, Student t tests, Pearson chi-square test, and multivariate logistic regression analysis, all performed using SPSS (IBM Corp). Qualitative methods included both inductive and deductive content analysis. Only 39% (50/129) of programs provided any information about neurodevelopment online. High surgical volume correlated with the presence of online information (P<.001). Websites were written at an average 7th to 10th grade reading level, and fewer than 5% of websites had information in a language other than English. Two semantic clusters of website format, content, and element selection were identified, reflecting distinct approaches to adult learners. Program websites clustered into \"sage on the stage\" and \"guide on the side\" formats. Few websites incorporated features caregivers previously identified as useful, with only 6% including the four most helpful features. We highlight the paucity of accessible caregiver-oriented information about neurodevelopment on congenital cardiac surgical programs' websites in the United States and characterize two primary website models. The lack of information may negatively impact caregiver understanding of and engagement with neurodevelopmental services for their child with a congenital heart defect. Future research should explore the impact of each website model on caregiver understanding of and engagement with neurodevelopmental services, as well as the generalizability of these findings to other domains of pediatric subspecialty care.

Children with medical complexity experience multiple chronic conditions that demand intensive, ongoing, and highly coordinated care, often placing a burden on their parents, who serve as primary caregivers. Digital health offers a promising solution for enhancing care coordination, monitoring, and communication. However, its effectiveness depends on it being developed as a user-centered solution that incorporates feedback from parents, who are the primary decision-makers and advocates in their children's health care. By prioritizing the voices of parents, especially those from underserved communities, during the design and implementation of digital health solutions, these tools can more effectively meet their unique needs. This ensures that digital health solutions are effective in real-world caregiving scenarios. This qualitative study explored the experiences of family caregivers of children with medical complexity, with a focus on parents from underserved communities, shedding light on the challenges they face and opportunities for future digital health innovations. Underserved communities in this study are defined as families experiencing structural barriers to accessing specialized care for children with medical complexity, often necessitating additional support from nonprofit or community-based organizations. We conducted semistructured interviews with 19 parents of children with medical complexity from underserved communities. All interviews were conducted over Zoom and were audio recorded. We conducted an inductive, reflexive thematic analysis using an iterative codebook to support analytic transparency. The children in this study had a variety of chronic conditions, each experiencing at least 3 chronic, long-lasting medical conditions. An inductive thematic analysis revealed two broader key themes: (1) virtual care and (2) consumer mobile health (mHealth) apps. The \"virtual care\" theme focused on the use of remote health care services and communication with health care providers, highlighting parents' challenges and needs for enhancing virtual care. The \"consumer mHealth apps\" theme identified needs and challenges in the care management of children with medical complexity that could be addressed through consumer mHealth apps. This study highlights several insights into the digital health needs of children with medical complexity and their family caregivers. Parents identified a clear and urgent need for telehealth features tailored to better support the unique needs of care for children with medical complexity. Despite the growing adoption of consumer mHealth apps, caregivers reported ongoing challenges, underscoring the necessity for user-centered solutions that are specifically designed with their needs in mind. Future research and development should focus on integrating user feedback to continuously refine and enhance digital health solutions. By addressing these gaps, technology can better empower caregivers and improve the overall health care experience for families of children with medical complexity. Ultimately, this study provides valuable guidance for future digital health innovations to support parents of children with medical complexity from underserved communities.

Informal carers, people providing unpaid support to relatives or close others with an illness, disability, or advanced age-related care needs, are key stakeholders in health care systems. Carers have their own health and well-being challenges; however, their needs and care pathways are often overlooked by health care providers. Open online courses offer opportunities to address the information and support needs of large numbers of carers. However, our collective understanding of the design and outcomes of courses and learner experiences is limited. This systematic integrative review aimed to map the characteristics of open online courses for informal carers, explore learner experiences, and identify barriers and enablers to participation to inform the design of future courses. Following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, we systematically searched 4 electronic databases (APA PsycINFO, CINAHL, EMBASE, and MEDLINE) for papers published from inception to January 30, 2025. Included papers were peer-reviewed, in the English language, and reported on the development, delivery, or outcomes of open online courses for informal carers aged more than 16 years. Excluded papers had no carer focus or were conference abstracts. Two reviewers independently screened titles and abstracts for eligibility. Backward and forward citation searches were conducted. Due to study heterogeneity, data on paper methodology, course characteristics, and course evaluations were extracted and synthesized narratively. Quality assessments of quantitative papers and the quantitative components of mixed methods papers used the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool. Qualitative components within mixed methods papers were appraised using the Critical Appraisal Skills Program (CASP) toolkit. Searches identified 201 papers, of which 10 (6 quantitative and 4 mixed methods) met the inclusion criteria. No qualitative papers were identified. All included courses were massive open online courses. Sample sizes ranged from 3 to 17,591 participants, primarily targeting carers of older individuals (n=4). Completion rates ranged from 42% to 67% (n=5). Five papers reported improved carer knowledge and application of skills. Key enablers to learning included course accessibility and flexibility. Key barriers to learning included limited peer interaction, technical difficulties, time constraints, language challenges, and online privacy challenges. Most papers were of weak quality, except for 1 strong quantitative RCT. The evidence was limited by moderate-to-weak study quality, inconsistent measures, and exclusion of gray literature. Despite these limitations, findings suggest that open online courses may improve carers' knowledge and skills and enable accessible, flexible learning. However, barriers to learning, including limited learner-to-learner interaction within and external to the course, time constraints, and digital or language barriers, highlight the need for more inclusive and interactive course designs. Further high-quality research is needed to standardize outcomes.

Spina bifida (SB) is a congenital condition that requires long-term multidisciplinary medical collaboration for treatment. Previous research has primarily focused on the negative impacts experienced by caregivers of children with SB. However, with the development of positive psychology, the concept of benefit-finding (BF) has been explored in the context of caregivers of children with various chronic illnesses. Nonetheless, in Japan, BF among caregivers of children with SB remains unexplored, and no appropriate measurement tool has been developed for this population. This study aimed to translate and validate the Japanese version of the University of Washington Caregiver Benefit Scale (UW-CBS) based on caregivers of children with SB and to examine the characteristics of BF in these caregivers. A comparative analysis with caregivers of able-bodied children was also conducted to elucidate the parenting stress and social support experienced by families rearing children with SB. This 2-part study was carried out from January 2024 to December 2024. In Study 1, the UW-CBS was translated, then face validity was examined through a pretest (n=6) using cognitive interviews. In the main survey, construct validity, known-groups validity, and retest reliability were evaluated (n=60). In Study 2, the characteristics of BF of caregivers of children with SB were analyzed using data from the main survey. Parents of able-bodied children (n=66) completed the same questionnaire. Parenting stress, BF, and social support scores were then compared between caregivers of children with SB and the parents of able-bodied children. In Study 1, the reliability and validity of the UW-CBS were examined. Internal consistency was high (Cronbach α=0.92), while test-retest reliability had an intraclass correlation coefficient of 0.62 (P=.051). In Study 2, caregivers who had a partner (P=.009) and those who were rearing both a child with SB and a sibling reported higher levels of BF (P=.02). Compared with families rearing able-bodied children, no significant differences emerged in BF or parenting stress, but the level of social support was significantly higher in families of children with SB (P=.005). This study demonstrated the reliability and validity of the Japanese version of the UW-CBS in families rearing children with SB. For caregivers of children with SB, assistance from other family members or shared childcare responsibilities may facilitate positive adjustment. Moreover, the higher level of social support received by caregivers of children with SB may mitigate their parenting stress and foster their perception of benefits.

Generative artificial intelligence (GenAI) tools are widely accessible to the public, who are engaging with them for a wide range of health care applications. Existing research has focused predominantly on clinician-facing adoption. Far less is known about how patients and family members use GenAI tools, particularly in rare disease contexts, where diagnostic delay, limited specialist access, and unmet informational needs are common. This study aimed to examine the experiences and opinions of adult patients with rare diseases and parents or guardians of children with rare diseases regarding the use of GenAI tools. Between November 2025 and January 2026, we conducted an exploratory mixed methods web-based survey using convenience sampling through rare disease community organizations in the United States. The survey included closed-ended items assessing prior GenAI use, purposes of use, perceived influence on medical decisions and diagnoses, trust, concerns, communication with clinicians, and experiences of harm, alongside open-text questions capturing qualitative reflections. Descriptive statistics were used to summarize quantitative data. Inductive qualitative analysis was applied to the open-text responses. A total of 115 respondents completed the survey. A majority of respondents were parents or guardians of a child with a rare disease (n=74, 64.3%), and the remaining respondents were patients with a rare disease (n=41, 35.7%). Slightly more than half of respondents (n=63, 54.8%) reported prior use of GenAI tools in the context of rare disease. Common purposes included exploring new treatments or clinical trials (n=53, 46.1%), interpreting medical tests or clinical notes (n=37, 32.2%), locating specialists or care centers (n=29, 25.2%), and suggesting possible diagnoses (n=28, 24.3%). Nearly one-third of respondents (n=37, 32%) reported some degree of influence of GenAI on their medical decisions. Nearly 10% (n=12) reported contributions of GenAI to a formal diagnosis. Concern about GenAI accuracy was widespread; 71 of 115 (61.8%) respondents reported moderate to extreme concern. Most respondents (n=90, 78.3%) had not discussed AI-generated information with a clinician. Few respondents (n=7, 6.1%) reported experiencing harm. Qualitative analysis identified 3 themes: (1) GenAI as a practical tool for augmenting patient and caregiver expertise and advocacy, (2) conditional trust and bounded use of GenAI with an emphasis on verification and human oversight, and (3) perceived risks, harms, and structural concerns, including inaccuracies, genetic misinterpretation, and privacy and commercialization issues. In this exploratory study, patients and families affected by rare diseases were actively experimenting with GenAI tools to support information seeking, preparation, and advocacy while simultaneously expressing substantial caution and concern about the reliability, safety, and appropriate boundaries of use. Our findings contrast sharply with clinician concerns that patients lack the capacity to use GenAI tools judiciously. Notwithstanding, the sample was skewed toward highly educated participants. Future research should prioritize more representative samples to better capture the range of patient and caregiver experiences with GenAI in rare disease care.

Protracted bacterial bronchitis (PBB) is a leading cause of chronic wet cough in children. Misdiagnosis and inadequate treatment may lead to the progression of diseases. The objective of this paper was to analyze factors influencing the cough duration prior to the diagnosis and assess health-related quality of life in children with PBB. Children diagnosed with PBB in the Qilu Hospital of Shandong University from November 2021 to November 2022 were included in this study. Clinical data were collected; parents completed the Parent-Proxy Cough-Specific Quality of Life (PC-QOL) questionnaire and the simplified Cough Symptom Score. Children aged 6 years and older completed the Leicester Cough Questionnaire in Mandarin-Chinese (LCQ-MC). As of November 2022, we enrolled 88 patients. Place of residence (B=9.35, 95% CI 0.36-18.35; P=.04) and rest status during the coughing episode (B=7.87, 95% CI 0.36-15.38; P=.04) were significantly associated with cough duration prior to the diagnosis. PC-QOL scores (physical: mean 3.10, SD 1.36; psychological: mean 3.32, SD 1.57; social: mean 3.67, SD 1.53; total: mean 10.09, SD 4.21) showed physical-social differences (t174=-2.58, P=.01). PC-QOL posttreatment scores were significantly higher than pretreatment scores (physical: t18=-6.05, P<.001; psychological: t18=-4.42, P<.001; social: t18=-4.79, P<.001; total: t18=-5.25, P<.001). However, the scores of each PC-QOL domain were significantly lower than those of the LCQ-MC (physical: t34=8.31, P<.001; psychological: t34=6.58, P<.001; social: t34=5.09, P<.001; total: t34=8.11, P<.001). Place of residence and rest status during the coughing episode were significantly associated with cough duration prior to the diagnosis. Furthermore, PBB significantly reduces quality of life in physical, psychological, and social aspects.

Parents of young children with type 1 diabetes (T1D) are vulnerable to experiencing fear of hypoglycemia (FH), an emotional condition that includes persistent and intense worry about hypoglycemia and/or use of unhealthful behaviors to avoid hypoglycemia. Despite greater uptake of continuous glucose monitors (CGMs) and automated insulin delivery systems, FH remains prevalent and under-addressed in parents of young children. As such, we developed Reducing Emotional Distress for Childhood Hypoglycemia in Parents (REDCHiP), a video-based telehealth intervention designed to reduce FH in parents by providing T1D education and teaching parents how to apply evidence-based strategies from cognitive behavioral therapy and behavioral parent training in their child's daily T1D care. This study aimed to compare the REDCHiP intervention to a novel attention control condition (ATTN) to better isolate treatment effects for REDCHiP based on parents' FH and diabetes distress. This was a multisite randomized controlled trial. We enrolled 197 families and randomized 183 to either REDCHiP or ATTN. Both REDCHiP and ATTN parents completed 10 video-based telehealth sessions. Our primary outcome was changes in parental FH; secondary outcomes included changes in parental diabetes distress and children's glycated hemoglobin A1c (HbA1c). We used a series of mixed-effects models and logistic regression to evaluate treatment effects. Parents in REDCHiP and ATTN attended >95% of sessions with high treatment fidelity. FH and diabetes distress decreased significantly over time in both REDCHiP and ATTN. Treatment-slope effects slightly favored REDCHiP but were not statistically significant for FH (P=.09) or distress (P=.06). However, parents receiving REDCHiP were significantly less likely to report clinically elevated diabetes distress over time compared to ATTN (P=.02). Child HbA1c showed a small, nonsignificant reduction over time (P=.06). Parents with elevated depressive symptoms consistently reported higher FH and distress across all time points. REDCHiP demonstrated high feasibility, acceptability, and potential clinical relevance in reducing diabetes distress among parents of young children with T1D. While overall treatment effects were modest, use of an attention control condition represents a meaningful advancement in trial rigor for pediatric behavioral interventions. Future adaptations of REDCHiP may enhance its impact, particularly for parents experiencing comorbid depressive symptoms.