Search Results (158)

Mucopolysaccharidosis type II (MPS II; also known as Hunter syndrome), is a rare X-linked lysosomal disease that leads to progressive tissue and organ damage. Early treatment is essential as most symptoms of MPS II are not reversible. Consequently, MPS II has been added to many newborn screening (NBS) programs. This narrative literature review provides practical recommendations from a multidisciplinary expert panel on the US-based NBS for MPS II and its diagnosis and clinical management. Recommendations for NBS programs include aiming for universal access to NBS within their jurisdiction, implementing tiered testing to support diagnostic accuracy, and providing infrastructure for confirmatory testing and post-screening support for families. Recommendations for health care providers (HCPs) include communicating test results empathetically and alongside verbal and written information, allowing families to express their feelings, and consulting an MPS II specialist to support treatment recommendations. The NBS programs and HCPs should work together to ensure positive screening results are communicated effectively and to provide equitable access to treatment and long-term care. Such a coordinated and appropriately resourced effort involving NBS programs, HCPs, and patient advocates will ensure better support for families and the best possible outcomes for individuals with MPS II. Full article

Congenital cytomegalovirus (cCMV) is characterized by highly variable outcomes; how diagnostic information is communicated to families is critical, yet parent experiences of communication following a cCMV diagnosis are not well described. The objective was to examine parent experiences of communication following a cCMV diagnosis and identify opportunities to improve communication in the setting of clinical uncertainty. The method used was semi-structured interviews with 41 mothers of children with cCMV explored communication of diagnostic results, interactions with healthcare providers, and perceptions of information clarity, timing, and adequacy. Transcripts were analyzed using thematic analysis. Participants described variability in diagnostic communication, including differences in timing, modality, and content. Some received in-person counseling, whereas others learned of the diagnosis through phone calls, written communication, or electronic health portals prior to provider contact. Many reported limited explanation, insufficient anticipatory guidance, and inconsistent or incomplete information across providers. These communication gaps contributed to confusion, increased reliance on external information sources, and diminished trust in the healthcare system. Participants emphasized the importance of clear, compassionate communication that acknowledges uncertainty while providing actionable guidance. Communication surrounding cCMV diagnosis is inconsistent and often does not meet family needs. Diagnostic disclosure should function as a clinical intervention requiring clear, patient-centered, longitudinal communication to support families navigating uncertainty. Full article

Background: While the consumer experience of psychosis has received significant attention in Western research, a substantial gap exists regarding the experiences of women in the Kingdom of Saudi Arabia (KSA). In this context, religious, cultural, familial, and gender-specific factors uniquely shape the experience of psychosis, help-seeking behaviors, and recovery. This study aimed to explore the lived experiences of Saudi women with psychosis across three phases: first-episode onset, hospitalization or follow-up, and community living after discharge. Methods: This hermeneutic phenomenological study, guided by van Manen’s methodology, employed all six lifeworld existentials: lived space, lived body, lived time, lived self-other, lived thing, and lived cyborg. Semi-structured interviews were conducted with 21 women diagnosed with psychosis at two hospitals in Riyadh, KSA. Data collection included 13 audio-recorded interviews and eight documented via field notes, supplemented by creative methods such as drawings, poems, and written texts analyzed using van Manen’s vocative method. All Arabic data were professionally translated and verified for accuracy. Results: Three overarching themes emerged. First, women’s lived experiences of first-episode psychosis highlighted the process of understanding causes and developing insight during onset. Second, experiences during admission and follow-up revealed the impact of clinical encounters, nursing care, and the critical need for therapeutic healing spaces. Third, living with psychosis in the community emphasized the complexities of medication adherence, family dynamics, and the pursuit of recovery through education, employment, and religious practice. Conclusions: The participants articulated user-based recovery perspectives, including empowerment, shared decision-making, and hope, which contrasted sharply with the service-based approaches they received. Culturally specific stressors and pervasive stigma shaped every phase of their journey. To the authors’ knowledge, no prior study has examined this population using a hermeneutic phenomenological framework; these findings provide a women-focused, culturally situated evidence base for developing gender-specific recovery models and enhanced discharge planning within the KSA mental health system. Full article

Background/Objectives: The trainer–doctor model (TDM) is a participatory paradigm in which the physician acts as a mentor and educator. Effective health communication and patient engagement are key determinants of treatment adherence and health outcomes. Based on this conceptual framework, the present study aimed to assess preferences for the Trainer–Doctor Model among dental practitioners and patients, examine the influence of demographic variables, and provide a preliminary psychometric evaluation of the TDM questionnaire in accordance with the COSMIN (COnsensus-based Standards for the selection of health Measurement Instruments) criteria. Methods: A cross-sectional survey was conducted in Romania between May 2023 and April 2024. The study included dental practitioners recruited during scientific dental conferences and patients recruited from a private dental practice in Alba Iulia, Romania. Eligible participants were adults aged 18 years or older who provided written informed consent and completed the data protection requirements. Individuals younger than 18 years of age or those who did not provide complete informed consent were excluded. Participants completed a 12-item Likert-type questionnaire assessing preferences toward the Trainer–Doctor Model. Results: Both groups showed high TDM preference (practitioners: 43.93 ± 5.56; patients: 44.77 ± 4.84; p = 0.195); 71–76% of responses were high-preference (≥4). Cronbach’s α with reverse-scored items was 0.752/0.651. EFA (KMO = 0.740; Bartlett’s p < 0.001) identified a 3-factor structure, explaining 51.3% of the variance. Patients scored significantly higher on items A (p = 0.002), B (p = 0.022), and F (p = 0.005). Conclusions: Both groups demonstrate a strong, consistent preference for TDM across demographics. The preliminary psychometric evaluation indicates acceptable internal consistency and structural validity; however, further validation, including Delphi-based content validation and confirmatory factor analysis, is required. Full article

Background/Objectives: Despite recommendations to use plain language for better outcomes in clinical care, physicians and other health care professionals frequently use unexplained medical jargon when communicating with patients. Few studies have examined the use of jargon in personalized written communication with patients. We evaluated the effects of a clear communication curriculum on medical residents’ use of unexplained jargon in written health-related messages sent to patients through a secure electronic patient portal. Methods: We retrospectively collected messages sent by first-year family medicine residents to patients during the 3 months before and 3 months after completion of a curriculum on health literacy and clear communication. Two researchers independently coded jargon in messages according to Pitt and Hendrickson’s taxonomy. Messages with ≥100 words were analyzed for readability using the Flesch-Kincaid Grade Level score. Rates of jargon use and mean readability were compared using t-tests. Results: Nine first-year residents produced a total of 421 messages in the pre- and post-intervention periods. The rate of unexplained jargon decreased from 7.2 to 6.3 jargon terms per 100 words following the training (p = 0.05), a 12.5% reduction, equivalent to nearly one fewer jargon term per message. Jargon rates did not differ by jargon subtype, and average readability did not change. Conclusions: This is the first known study to quantify physicians’ use of jargon in personalized messages written to patients. Jargon use was common. Exposure to the curriculum was associated with borderline significantly reduced use of unexplained jargon in the 3 months following training. Full article

Introduction: Chinese seniors in North America represent a growing population, and Traditional Chinese medicine (TCM) continues to play an important role in their health practices; however, TCM use has not been comprehensively synthesized from an immigrant perspective in North America. The purpose of this scoping review is to explore the use of TCM by Chinese seniors in Canada and the United States of America (USA). Methods: This scoping review is written in accordance with PRISMA guidelines. PubMed, PsycINFO, CINAHL, AgeLine, ERIC, ProQuest, Nursing and Allied Health Database, PsycARTICLES, Sociology Database, and Education Research Complete were selected for the literature search, which was conducted in August 2025. Articles were included if they investigated the use of any form of TCM among Chinese seniors aged 65 years or older living in the USA and Canada, and were published in an English-language peer-reviewed journal. Results: Twenty-four studies were included in this review, with a total sample size of 7288. The findings indicated that, in the majority of the included studies, over half of the Chinese seniors used some form of TCM. TCM therapies included over-the-counter herbal products, TCM-based physical activities, TCM practitioner consulting, and TCM food practices and therapies. Use of TCM among Chinese seniors was related to musculoskeletal symptoms, cardiovascular symptoms, mental health, severe acute respiratory syndrome prevention, cancer screening, and oral health. Chinese seniors tend to integrate TCM with Western medicine in their healthcare practices. Several factors from individual, familial, and community levels influenced Chinese seniors’ use of TCM. Conclusions: Future research should investigate the integration of TCM with Western healthcare, the training of healthcare providers to improve their understanding of TCM, and the underlying mechanisms of TCM products. Full article

Background/Objectives: Effective cardiovascular prevention requires improved risk perception and appropriate communication strategies that support cost-effective interventions. This study evaluated one-year changes in cardiovascular risk estimation accuracy and examined associations between communication strategies, accuracy, and health outcomes. Methods: We analyzed 200 participants (mean age: 56.06 ± 6.26; 32.2% male) in a population-based study conducted in Hungary. Cardiovascular risk was calculated using the Framingham Risk Score based on laboratory and anthropometric measures, and subjective risk perception was assessed and categorized as realistic, optimistic, or pessimistic relative to objective risk. All participants received written risk feedback, while subgroups additionally participated in individual or group-based risk communication. Results: After 12 months, the proportion of participants with accurate risk perception increased from 39.0% to 50.5% (p = 0.012), accompanied by a significant reduction in pessimistic estimations (p = 0.013). We could not observe significant differences in estimation accuracy between communication strategies. The written-only communication group showed a significant decrease in cardiovascular risk factors (weight (p = 0.014), BMI (p = 0.042), blood pressure (p = 0.035), and LDL levels (p = 0.001)). No significant differences were found in health outcomes between risk communication groups. Conclusions: These results demonstrate that even written-only communication may be an effective way to improve cardiovascular health outcomes, possibly by correcting risk perception gaps, suggesting that cost-effective, low-intensity communication strategies may be sufficient to support primary prevention efforts. Full article

Background: Posterior spinal fusion (PSF) for adolescent idiopathic scoliosis (AIS) is a standard procedure with recognized long-term complications that may emerge years after surgery. Informed consent requires disclosure of material risks, but it is unclear whether these long-term sequelae are consistently communicated. This study systematically reviewed publicly available consent materials to assess disclosure of evidence-based long-term complications of PSF for AIS. Methods: Official websites of spine, orthopedic, and neurosurgical societies, along with major hospitals across North America, South America, Europe, and Australia, were searched for publicly available informed consent forms and patient information leaflets related to PSF for AIS. Documents were assessed for explicit mention of predefined long-term complications: chronic pain/health-related quality of life, pseudoarthrosis, adjacent segment degeneration, future surgery, pulmonary function impact, late infection, local tissue reaction to metal debris, and pregnancy-related issues. Disclosure frequencies were calculated. Results: Thirty-one documents from ten countries were included. Immediate perioperative risks were almost universally reported, whereas long-term complications were inconsistently disclosed. Reporting frequencies were: pseudoarthrosis, 80.6% (n = 25); future surgery, 67.7% (n = 21); adjacent segment degeneration, 51.6% (n = 16); chronic pain, 48.4% (n = 15); local tissue reaction to metal debris, 38.7% (n = 12); late infection, 25.8% (n = 8); pregnancy-related issues, 22.6% (n = 7); and pulmonary impact, 9.7% (n = 3). Conclusions: Publicly available consent materials for AIS surgery incompletely disclose long-term complications compared with the published evidence. However, written information sheets and consent forms represent only one component of the consent process. Consistently with the patient-centered standard articulated in Montgomery v Lanarkshire Health Board, informed consent should include discussion of material risks, benefits, reasonable alternative treatments including standard care, and the option of no treatment, with disclosure tailored to what matters to the patient and family. Updating written materials to better reflect lifelong risks may strengthen one important component of informed consent and shared decision-making for patients and families. Full article

Background/Objectives: Adopting written nutrition standards for food sold or served by local governments is a strategy for increasing access to healthier options among employees and residents. Methods: We used data from a 2021 national survey of 1982 municipal governments serving populations of 1000 or more. Among municipalities that sell or serve food or beverages, we examined the prevalence and 95% confidence intervals (CI) of those with written nutrition standards. Logistic regression models were used to obtain odds ratios and 95% CIs of written nutrition standards by municipality characteristics. Finally, we examined the prevalence including nutrition standards in food purchasing agreements or food service contracts among municipalities that sell or serve food and have written nutrition standards. Results: Among U.S. municipalities in 2021, 32% reported selling and 21% reported serving food or beverages. Among U.S. municipalities that sell or serve food or beverages, the prevalence of municipalities with written nutrition standards was 19%, and of these, 78% reported including their written nutrition standards in city food purchasing agreements or food service contracts. In adjusted analyses, the region (West vs. Midwest adjusted odds ratio [aOR]: 2.9 [95% CI: 1.7, 4.9]) and presence of a food policy council remained significantly associated with having written nutrition standards (aOR: 1.7 [1.1, 2.5]). Conclusions: Although only 1 in 5 municipalities that sell or serve food or beverages have written nutrition standards, of those that do, almost 80% reported including the standards in contracts, highlighting an important implementation lever and a public health opportunity for communities to adopt standards that offer healthy food and beverage options in public spaces. Full article

Purpose: This study examines (1) the change in partnership between local health departments (LHDs) and schools of public health or public health programs (SPHs/PHPs) from 2016 to 2019, and (2) the LHD characteristics associated with this partnership. Background: The Council on Education for Public Health updated accreditation criteria in 2016, shifting from core curricula to competencies to better prepare public health graduates for the workforce. Strong partnerships between LHDs and SPHs/PHPs can enhance practical training and employment opportunities for students, ultimately bolstering the public health workforce. Methods: We analyzed the 2016 and 2019 National Profiles of Local Health Departments, using descriptive statistics to evaluate partnership levels and multivariable logistic regression to identify LHD characteristics associated with collaboration. Results: The partnership between LHDs and SPHs/PHPs was suboptimal and unevenly distributed. Engagement in activities like formal training agreements and advisory roles declined. Notably, the presence of formal written agreements for staff training and active recruitment of SPH/PHP graduates by LHDs showed significant improvements (χ² = 3.84; p = 0.049; χ² = 8.19; p = 0.004). Factors such as top executive characteristics, workforce capacity, and governance context influenced these partnerships. Conclusions: The study identifies gaps in LHD engagement with SPHs/PHPs and highlights opportunities for advocacy. Addressing these gaps can lead to a more competent workforce, thereby benefiting both LHDs and SPHs/PHPs in their service to communities. Full article

Background: Written educational materials are widely used in community pharmacies to support patient education, and available evidence suggests their effectiveness in improving short-term knowledge. However, there remains a need for well-documented, practice-oriented evaluations of pharmacist-developed materials in real-world community pharmacy settings. The aim of this study was to evaluate the immediate impact of a pharmacist-developed educational leaflet on women’s health knowledge and its perceived usefulness, clarity, and acceptability. Methods: This study evaluated pharmacist-developed educational leaflets addressing women’s health topics using a pre–post study design. The study was conducted in Poland and involved 266 adult women. All participants completed a five-question knowledge test before and immediately after reading the educational leaflet, followed by a self-assessment of perceived usefulness, clarity, and visual appeal. Descriptive statistics were performed to summarize the results. Results: A statistically significant increase in knowledge was observed after exposure to the educational material, with mean scores rising from 2.8 ± 1.2 to 4.6 ± 0.7 (out of 5, p < 0.001). The greatest improvements were noted in topics related to sexually transmitted infection self-testing and pregnancy testing. Most participants rated the leaflet as useful, comprehensible, attractive, and engaging, with higher ratings reported among younger and better-educated respondents. Conclusions: Pharmacist-developed educational leaflets can support short-term knowledge acquisition and are perceived positively by women across age groups. These findings highlight the potential role of community pharmacies in delivering accessible written health education, while underscoring the need for future studies to assess long-term knowledge retention, behavioral outcomes, and topic-specific, targeted materials. Full article

Breastfeeding is universally regarded as the cornerstone of infant feeding, as it is the ideal infant feeding choice for optimal nutrition and development. Socio-structural factors of breastfeeding in child health play an important role in guiding women’s decisions on options to feed their babies. A cross-sectional study was conducted among mothers with infants aged 0–6 months in Mthatha, Eastern Cape, with the aim of assessing the role of socio-structural factors in shaping feeding intentions and practices among mothers with infants. Written Informed consent was obtained in accordance with the Declaration of Helsinki from the participants prior to data collection. Data was gathered with a validated designed questionnaire as well as analyzed using Social Sciences (SPSS) version 29. A total of 181 mothers were enrolled. Only 45.9% reported that they exclusively breastfed their babies, of which the highest proportion of exclusive breastfeeding (EBF) was observed among the 21–29 age group at 51.8%, and the lowest among those aged 20 years and below (3.6%). Marital status (p = 0.005) and employment status (p < 0.001) were significantly associated with exclusive breastfeeding, with higher EBF rates observed among married mothers and those who were self-employed. Both the EBF mothers and non-EBF mothers shared a common belief that colostrum was not beneficial for infants (p = 0.854), whereas their views differed significantly on the amount of water given to infants before they reached six months (p = 0.001). There was no significant relationship between EBF status and having a family member who had breastfed in the past six months (p = 0.815); also, a weak association was noted for having a friend who had breastfed recently (p = 0.057). The difference in EBF practice between those receiving antenatal care (ANC) breastfeeding education and those not receiving it was not statistically significant (p = 0.591). A statistically significant association was found between the support level and exclusive breastfeeding status (p < 0.001). This study highlights that the successful practice of exclusive breastfeeding (EBF) is strongly associated with high levels of social support. Interventions are needed to engage active partners, family members, and community members in creating a supportive environment for breastfeeding mothers. Full article

Background/Objectives: Antimicrobial resistance (AMR) is a major global health threat that reduces antibiotic effectiveness and increases healthcare burdens. Countries in the Asia–Pacific region face a particularly high AMR burden, necessitating international collaboration, education, and practical training to combat this growing crisis. This study describes the design, implementation, and educational outcomes of the Infection Diagnosis Workshop, a short-term international program primarily targeting undergraduate medical sciences students that integrates AMR-focused hands-on clinical microbiology training and lectures, alongside cross-cultural collaboration and scientific English communication. Methods: The Infection Diagnosis Workshop was implemented as a four-day program combining lectures with hands-on laboratory activities. Training emphasizes the detection and analysis of antibiotic-resistant bacteria through environmental sampling, bacterial culturing, phenotypic and genotypic resistance detection, and species identification, core components that have remained consistent since the workshop’s establishment. Students also attended lectures on AMR science, global impact, and management strategies. Group discussions and collaborative tasks encouraged interdisciplinary learning. A thematic analysis of student feedback essays from previous workshop cohorts was conducted to identify key concepts, learning outcomes, and shared experiences. All participants provided informed consent for the use of their written feedback. Results: Thematic analysis revealed key learning outcomes categorized into three themes: (1) Knowledge, Awareness, and Technical Skills; (2) Cultural Understanding and Cross-Cultural Collaboration; and (3) English Language and Communication Skills. Students reported increased AMR knowledge, improved laboratory proficiency, enhanced cultural adaptability, and greater confidence in English communication. They also expressed a deeper appreciation for interdisciplinary and international approaches to AMR. Conclusions: The Infection Diagnosis Workshop effectively integrated practical laboratory training with international and cross-cultural engagement. The program strengthened student competencies and contributed to building global partnerships essential for combating AMR. Full article

Background: Antimicrobial resistance (AMR) is a major global health threat, and Cyprus reports one of the highest levels of community antibiotic consumption in the EU. Despite their central role in antibiotic access and counselling, the stewardship practices and perspectives of community pharmacists in this regulated setting are not well documented. Methods: We conducted semi-structured qualitative interviews with 20 community pharmacists to explore their perspectives on antibiotic use and AMR. Results: We analysed the data using reflexive thematic analysis, revealing five key themes: regulation and control of dispensing; pharmacist–patient interaction and misuse; antimicrobial stewardship and public education; safety and professional responsibility; and systemic barriers. Pharmacists reported strict adherence to prescription-only rules, and described regulation and e-prescribing as a practical ‘shield’ that legitimised refusals and redirected some misuse from overt non-prescription requests towards attempts to reuse, extend, or ‘top up’ prior prescriptions and household leftovers. They described managing frequent patient demands for antibiotics for self-limiting conditions and using brief counselling scripts, written aids, and symptomatic alternatives to promote appropriate use. Participants emphasised the risks of antibiotic-related harms, including AMR and other health consequences, while also highlighting workload, access constraints, and communication difficulties as barriers to effective counselling. Overall, the findings indicate that community pharmacists in Cyprus function as front-line antimicrobial stewards. Conclusions: These accounts position community pharmacists in Cyprus as front-line antimicrobial stewards. Policy should consider supporting this function by providing enhanced communication tools, improving access pathways for timely prescriber review (including outside routine hours), and strengthening links between community pharmacy and national AMR action plans. Full article

Background: Peer-led Active Rehabilitation Camps (ARC) aim to enhance functional independence and self-management among people with spinal cord injury (SCI). In Poland, where access to specialized spinal units and lifelong follow-up is limited, these programs may help address key health priorities—mobility, bowel and bladder management, sexual well-being, and upper-limb function. This study examined whether participation in ARC helped individuals achieve these priorities and identified factors associated with outcomes. Methods: This prospective cohort study, part of the Inter-PEER project, included 125 adults with SCI who attended one of 16 consecutive ARCs in Poland (2023–2024). Eligible participants used a manual wheelchair, were aged ≥ 16 years, and could complete written questionnaires. Data were collected at camp start (T1), completion (T2), and 3-month follow-up (T3) using surveys and wheelchair skills assessments. Validated instruments (SCIM-SR, MSES, QEWS, WST-Q, LiSat-11) were used and were aligned with the four priority domains. Associations with demographic and injury variables were examined using multivariate regression analyses. Results: Participants showed significant gains across priorities during the 10-day ARC. Mobility improved on all wheelchair-skill measures (e.g., QEWS + 2.6 points, p < 0.001), with most gains sustained at T3. Among participants with tetraplegia, self-care and hygiene scores increased by 24% and remained elevated at follow-up. Confidence in achieving a satisfying sexual relationship increased by camp end and was accompanied by higher sexual-life satisfaction at T3. Regression analyses found only modest associations between outcomes and demographic or injury characteristics. Conclusions: Participation in peer-led ARC programs was associated with rapid, clinically meaningful improvements in several health domains prioritized by people with SCI, especially upper-limb function, sexual well-being, and wheelchair mobility. Our findings highlight the value of integrating structured, peer-based community programs into the continuum of SCI rehabilitation. Full article