Content Validity of the Modified Functional Scale for the Assessment and Rating of Ataxia (f-SARA) Instrument in Spinocerebellar Ataxia.

The functional Scale for the Assessment and Rating of Ataxia (f-SARA) assesses Gait, Stance, Sitting, and Speech. It was developed as a potentially clinically meaningful measure of spinocerebellar ataxia (SCA) progression for clinical trial use. Here, we evaluated content validity of the f-SARA. Qualitative interviews were conducted among individuals with SCA1 (n = 1) and SCA3 (n = 6) and healthcare professionals (HCPs) with SCA expertise (USA, n = 5; Europe, n = 3). Interviews evaluated symptoms and signs of SCA and relevance of f-SARA concepts for SCA. HCP cognitive debriefing was conducted. Interviews were recorded, transcribed, coded, and analyzed by ATLAS.TI software. Individuals with SCA1 and 3 reported 85 symptoms, signs, and impacts of SCA. All indicated difficulties with walking, stance, balance, speech, fatigue, emotions, and work. All individuals with SCA1 and 3 considered Gait, Stance, and Speech relevant f-SARA concepts; 3 considered Sitting relevant (42.9%). All HCPs considered Gait and Speech relevant; 5 (62.5%) indicated Stance was relevant. Sitting was considered a late-stage disease indicator. Most HCPs suggested inclusion of appendicular items would enhance clinical relevance. Cognitive debriefing supported clarity and comprehension of f-SARA. Maintaining current abilities on f-SARA items for 1 year was considered meaningful for most individuals with SCA1 and 3. All HCPs considered meaningful changes as stability in f-SARA score over 1-2 years, 1-2-point change in total f-SARA score, and deviation from natural history. These results support content validity of f-SARA for assessing SCA disease progression in clinical trials.

Vaccine Attitudes and COVID-19 Vaccine Intention Among Parents of Children With Kidney Disease or Primary Hypertension.

RATIONALE & OBJECTIVE: Children with kidney disease and primary hypertension may be more vulnerable to COVID-19. We examined COVID-19 vaccine hesitancy among parents of children with chronic kidney disease or hypertension. STUDY DESIGN: Sequential explanatory mixed-methods design; survey followed by in-depth interviews. SETTING & PARTICIPANTS: Parents of children aged <18 years with kidney disease or primary hypertension within a large pediatric practice. EXPOSURE: Parental attitudes toward general childhood and influenza vaccines assessed by the Vaccine Hesitancy Scale. Kidney disease classification, demographic and socioeconomic factors, experiences with COVID-19, COVID-19 mitigation activities and self-efficacy, and sources of vaccine information. OUTCOME: Willingness to vaccinate child against COVID-19. ANALYTICAL APPROACH: Analysis of variance (ANOVA) test to compare parental attitudes toward general childhood and influenza vaccination with attitudes toward COVID-19 vaccination. Multinomial logistic regression to assess predictors of willingness to vaccinate against COVID-19. Thematic analysis of interview data to characterize influences on parental attitudes. RESULTS: Of the participants, 207 parents completed the survey (39% of approached): 75 (36%) were willing, 80 (39%) unsure, and 52 (25%) unwilling to vaccinate their child against COVID-19. Hesitancy toward general childhood and influenza vaccines was highest among the unwilling group (P < 0.001). More highly educated parents more likely to be willing to vaccinate their children, while Black race was associated with being more likely to be unwilling. Rushed COVID-19 vaccine development as well as fear of serious and unknown long-term side effects were themes that differed across the parental groups that were willing, unsure, or unwilling to vaccinate their children. Although doctors and health care teams are trusted sources of vaccine information, perceptions of benefit versus harm and experiences with doctors differed among these 3 groups. The need for additional information on COVID-19 vaccines was greatest among those unwilling or unsure about vaccinating. LIMITATIONS: Generalizability may be limited. CONCLUSIONS: Two-thirds of parents of children with kidney disease or hypertension were unsure or unwilling to vaccinate their child against COVID-19. Higher hesitancy toward routine childhood and influenza vaccination was associated with hesitancy toward COVID-19 vaccines. Enhanced communication of vaccine information relevant to kidney patients in an accessible manner should be examined as a means to reduce vaccine hesitancy. PLAIN-LANGUAGE SUMMARY: Children with kidney disease or hypertension may do worse with COVID-19. As there are now effective vaccines to protect children from COVID-19, we wanted to find out what parents think about COVID-19 vaccines and what influences their attitudes. We surveyed and then interviewed parents of children who had received a kidney transplant, were receiving maintenance dialysis, had chronic kidney disease, or had hypertension. We found that two-thirds of parents were hesitant to vaccinate their children. Their reasons varied, but the key issues included the need for information pertinent to their child and a consistent message from doctors and other health care providers. These findings may inform an effective vaccine campaign to protect children with kidney disease and hypertension.

Prevalence of heavy menstrual bleeding and associations with physical health and wellbeing in low-income and middle-income countries: a multinational cross-sectional study.

BACKGROUND: Data on the prevalence of heavy menstrual bleeding in low-income and middle-income countries (LMICs) are scarce. We aimed to assess the validity of a scale to measure heavy menstrual bleeding and calculate its prevalence in southern Asia and sub-Saharan Africa, and to examine associations between heavy menstrual bleeding and health outcomes. METHODS: Between Aug 2, 2021 and June 14, 2022, we surveyed 6626 women across ten cities (Meherpur and Saidpur, Bangladesh; Warangal, Narsapur, and Tiruchirappalli, India; Kathmandu, Nepal; Dakar, Senegal; Nairobi, Kenya; Kampala, Uganda; and Lusaka, Zambia), including questions on demographics, health, and the SAMANTA scale, a six-item measure of heavy menstrual bleeding. We conducted confirmatory factor analysis to assess construct validity of the SAMANTA scale, calculated the prevalence of heavy menstrual bleeding, and used regression analyses to examine associations of heavy menstrual bleeding with health outcomes. FINDINGS: 4828 women were included in the final analytic sample. Factor analysis indicated a one-factor model representing heavy menstrual bleeding. In the pooled analytic sample, 2344 (48·6%) of 4828 women were classified as experiencing heavy menstrual bleeding, and the prevalence was lowest in Dakar (126 [38·3%] of 329 women) and Kampala (158 [38·4%] of 411 women) and highest in Kathmandu (326 [77·6%] of 420 women). Experiencing heavy menstrual bleeding was significantly associated with feeling tired or short of breath during the menstrual period (risk ratio 4·12 (95% CI 3·45 to 4·94) and reporting worse self-rated physical health (adjusted odds ratio 1·27, 95% CI 1·08 to 1·51), but was not associated with subjective wellbeing (ß -3·34, 95% CI -7·04 to 0·37). INTERPRETATION: Heavy menstrual bleeding is highly prevalent and adversely impacts quality of life in women across LMIC settings. Further attention is urgently needed to understand determinants and identify and implement solutions to this problem. FUNDING: Bill & Melinda Gates Foundation, United States Agency for International Development, National Institutes of Health.

Digital health interventions for non-communicable disease management in primary health care in low-and middle-income countries.

Current evidence on digital health interventions is disproportionately concerned with high-income countries and hospital settings. This scoping review evaluates the extent of use and effectiveness of digital health interventions for non-communicable disease (NCD) management in primary healthcare settings of low- and middle-income countries (LMICs) and identifies factors influencing digital health interventions' uptake. We use PubMed, Embase, and Web of Science search results from January 2010 to 2021. Of 8866 results, 52 met eligibility criteria (31 reviews, 21 trials). Benchmarked against World Health Organization's digital health classifications, only 14 out of 28 digital health intervention categories are found, suggesting critical under-use and lagging innovation. Digital health interventions' effectiveness vary across outcomes: clinical (mixed), behavioral (positively inclined), and service implementation outcomes (clear effectiveness). We further identify multiple factors influencing digital health intervention uptake, including political commitment, interactivity, user-centered design, and integration with existing systems, which points to future research and practices to invigorate digital health interventions for NCD management in primary health care of LMICs.

Hypertension Care Coordination and Feasibility of Involving Female Community Health Volunteers in Hypertension Management in Kavre District, Nepal: A Qualitative Study.

Background: Hypertension and related complications are major contributors to morbidity and mortality in Nepal. Community health workers have been proposed as promising health cadres to meet the growing healthcare demand for non-communicable disease management in other developing countries. Objective: We aimed to explore existing workflows, needs and challenges for hypertension care coordination and to assess the feasibility of establishing a Female Community Health Volunteer (FCHV)-based hypertension management program in Kavre, Nepal. Design: We conducted one focus group discussion with eight FCHVs and twenty-three in-depth interviews with four FCHVs not attending FGD, nine individuals with hypertension, six health workers, and four health officials in two village development committees of Kavre District, Nepal. Applied thematic analysis was performed using NVivo 12. Results: Health literacy related to hypertension was low among both community members and FCHVs. Delay in treatment initiation and loss to follow-up were common patterns despite anti-hypertensive medication compliance. Major health system-related barriers included underutilization of primary healthcare institutions, communication gaps and lack of grass-roots level educational campaigns. Community pharmacies, monthly health camps and increasing governmental attention to NCDs were favorable for improving hypertension management. This study also supports that FCHVs should be provided with adequate training and financial incentives to promote hypertension education, screening and referral in their catchments. Conclusions: Barriers and facilitators identified in this study provide important implications for future hypertension management in Nepal. We recommend hypertension education and screening across Nepal at a grass-root level through FCHVs. Providing professional training and proper financial incentives for FCHVs are warranted. Highlights: Health literacy related to hypertension was low among both community members and Female Community Health Volunteers in Nepal.Delay in treatment initiation and loss to follow-up were common despite relatively high anti-hypertensive medication compliance.Health system-related barriers in research sites included underutilization of primary healthcare institutions, communication gaps, and lack of grass-roots level educational campaigns.Female Community Health Volunteers should be provided with adequate training and financial incentives to promote hypertension management.