Survival, morbidity, and quality of life in pulmonary arterial hypertension patients: a systematic review of outcomes reported by population-based observational studies.

BACKGROUND: Comprehensive summaries on real-world outcomes in pulmonary arterial hypertension (PAH)-a rare, incurable condition, are lacking. We conducted a systematic literature review to describe current survival, morbidity, and quality of life (QoL) outcomes in adult and pediatric PAH patients. We searched Medline and Embase electronic databases, clinicaltrials.gov, and encepp.eu entries, and grey literature to identify outcome estimates for right-heart catheterization-confirmed PAH patients from population-based observational studies (search date: 25 Nov 2021). Data were synthesized using a narrative approach and post-hoc subgroup meta-analyses were conducted to explore adult survival by region, disease severity, representativeness, and study period. The search yielded 7473 records. Following screening and full text review, 22 unique studies with 31 individual reports of outcomes were included. Studies were mostly national registries (n = 21), European (n = 13) and covering adults (n = 17); only six had systematic countrywide coverage of centers. Survival was the most frequently reported outcome (n = 22). Global adult 1-, 3-, and 5-year survival ranged from 85 to 99% (n = 15), 65 to 95% (n = 14), and 50 to 86% (n = 9), respectively. Subgroup meta-analysis showed that 1-, 3-, and 5-year survival in Europe was 90% (95% CI 86-94%; n = 8), 78% (95% CI 68-86%; n = 8), and 61% (95% CI 49-72%; n = 6), respectively; 1-year survival in North America was 88% (95% CI 83-93%; n = 3) and 3-year survival in Asia was 85% (95% CI 82-88%; n = 3). No difference in survival between regions was observed. Subgroup analysis suggested higher survival in patients with better baseline functional class; however, interpretation should be cautioned due to large subgroup heterogeneity and potential missingness of data. SHORT CONCLUSION: This review describes current disease outcomes based on well-defined and representative PAH populations. There is an overall lack of follow-up data for morbidity and QoL outcomes; survival estimates for pediatric patients are scarce and may not be generalizable to the current treatment era, although publications from large pediatric registries became available after our search date. This study demonstrated a remaining unmet need world-wide to improve long-term prognosis in PAH in the current era.

Effect of the Mamás del Río programme on essential newborn care: a three-year before-and-after outcome evaluation of a community-based, maternal and neonatal health intervention in the Peruvian Amazon.

Background: Despite remarkable progress in maternal and neonatal health, regional inequalities persist in Peru. In rural areas of Amazonian Loreto, access to quality care is difficult, home births are frequent, and neonatal mortality is high. We conducted a prospective before-and-after study to assess the effect after implementation and over time of a community-based intervention on essential newborn care (ENC). Methods: Mamás del Río consists of tablet-enhanced educational home visits by Community health workers (CHW) to pregnant women and mothers of newborns, with supportive training on ENC of traditional birth attendants and facility staff. The study area comprised 79 rural communities of three districts in Loreto. Primary outcomes were ENC practices in home births, secondary outcomes were ENC in facility births as well as healthcare seeking, measured at baseline before and at year 2 and year 3 after intervention implementation. Community censuses included questionnaires to women aged 15-49 years with a live birth. We calculated prevalence of outcomes at each time point and estimated adjusted prevalence differences (PD) between time points using post-estimation based on logistic regression. Findings: Following implementation early 2019, 97% of communities had a trained CHW. At year 2 follow-up, 63% (322/530) of women received a CHW visit during pregnancy. Seven out of nine ENC indicators among home births improved, with largest adjusted prevalence differences in immediate skin-to-skin contact (50% [95% CI: 42-58], p < 0.0001), colostrum feeding (45% [35-54], p < 0.0001), and cord care (19% [10-28], p = 0.0001). Improvements were maintained at year 3, except for cord care. At year 2, among facility births only three ENC indicators improved, while more women gave birth in a facility. Sensitivity analyses showed ENC prevalence was similar before compared to after onset of Covid-19 lockdown. Interpretation: ENC practices in home births improved consistently and changes were sustained over time, despite the onset of the Covid-19 pandemic. A community-based approach for behaviour-change in home-based newborn care appears effective. Process evaluation of mechanisms will help to explain observed effects and understand transferability of findings. Funding: Grand Challenges Canada and Peruvian National Council of Science and Technology.

Hear my voice: understanding how community health workers in the Peruvian Amazon expanded their roles to mitigate the impact of the COVID-19 pandemic through community-based participatory research.

INTRODUCTION: The COVID-19 pandemic led to the collapse of the Peruvian health system, disrupting healthcare access for indigenous communities in the Amazon. Our study analysed how community health workers (CHWs) from indigenous communities in the Peruvian Amazon expanded their roles to mitigate the effects of the COVID-19 pandemic. METHODS: Fourteen CHWs from Loreto, Peru, participated in a community-based participatory research project using Photovoice, a technique encouraging vulnerable groups to take photos and develop stories illustrating their lived experiences. Participants were recruited from Mamás del Río, a local university-based programme, through purposive sampling. CHWs were asked to photograph how the pandemic affected their lives and work. Participants met four times over 5 months to share photos and develop action items. Data were organised into key themes using thematic analysis. CHWs shared photo galleries with policy-makers in Loreto and Lima. RESULTS: CHWs produced 36 photos with 33 texts highlighting their roles during COVID-19. Three core themes emerged: the (1) collapse of health infrastructure, (2) use of medicinal plants versus pharmaceuticals and (3) community adaptations and struggles. The leadership of CHWs emerged as a cross-cutting theme as CHWs supported COVID-19 efforts without government training or resources. CHWs asked policy-makers for formal integration into the health system, standardisation of training and management of community pharmacies. CONCLUSION: CHWs demonstrated their leadership and expanded their roles during the pandemic with little to no training from the government. Global investment in robust CHW programmes can fortify healthcare delivery.

Prevalence of essential newborn care in home and facility births in the Peruvian Amazon: analysis of census data from programme evaluation in three remote districts of the Loreto region.

Background: Essential newborn care (ENC) covers optimal breastfeeding, thermal care, and hygienic cord care. These practices are fundamental to save newborn lives. Despite neonatal mortality remaining high in some parts of Peru, no comprehensive data on ENC is available. We sought to estimate the prevalence of ENC and assess differences between facility and home births in the remote Peruvian Amazon. Methods: We used baseline data from a household census of rural communities of three districts in Loreto region, collected as part of the evaluation of a maternal-neonatal health (MNH) programme. Women between 15 and 49 years with a live birth in the last 12 months were invited to complete a questionnaire about MNH-related care and ENC. Prevalence of ENC was calculated for all births and disaggregated by place of birth. Adjusted prevalence differences (PD) were post-estimated from logistic regression models on the effect of place of birth on ENC. Findings: All 79 rural communities with a population of 14,474 were censused. Among 324 (>99%) women interviewed, 70% gave birth at home, most (93%) without skilled birth assistance. Among all births, prevalence was lowest for immediate skin-to-skin contact (24%), colostrum feeding (47%), and early breastfeeding (64%). ENC was consistently lower in home compared to facility births. After adjusting for confounders, largest PD were found for immediate skin-to-skin contact (50% [95% CI: 38-62]), colostrum feeding (26% [16-36]), and clean cord care (23% [14-32]). ENC prevalence in facilities ranged between 58 and 93%; delayed bathing was lower compared to home births (-19% [-31 to -7]). Interpretation: Low prevalence of ENC practices among home births in a setting with high neonatal mortality and difficult access to quality care in facilities suggests potential for a community-based intervention to promote ENC practices at home, along with promotion of healthcare seeking and simultaneous strengthening of routine facility care. Funding: Grand Challenges Canada and Peruvian National Council of Science, Technology, and Technology Innovation.

Home birth preference, childbirth, and newborn care practices in rural Peruvian Amazon.

Home birth is very common in the Peruvian Amazon. In rural areas of the Loreto region, home to indigenous populations such as the Kukama-Kukamiria, birth takes place at home constantly. This study aims to understand the preference for home births as well as childbirth and newborn care practices among Kukama-Kukamiria women in rural Loreto. Following a case study approach, sixty semi-structured, face-to-face interviews were conducted with recent mothers who experienced childbirth within one year prior to the interview, female relatives of recent mothers who had a role in childbirth, male relatives of recent mothers, community health workers, and traditional healers. We found that for women from these communities, home birth is a courageous act and an intimate (i.e. members of the community and relatives participate in it) and inexpensive practice in comparison with institutional birth. These preferences are also linked to experiences of mistreatment at health facilities, lack of cultural adaptation of birthing services, and access barriers to them. Preparations for home births included handwashing and cleaning delivery surfaces. After birth, waiting for the godparent to arrive to cut the cord can delay drying of the newborn. Discarding of colostrum, lack of skin-to-skin contact as well as a range of responses regarding immediate breastfeeding and immediate drying of the baby were also found. These findings were used to tailor the educational content of the Mamas del Rio program, where community health workers are trained to identify pregnancy early, perform home visits to pregnant women and newborns, and promote essential newborn care practices in case institutional birth is not desired or feasible. We make recommendations to improve Peru's cultural adaptation of birthing services.

Indigenous communities' responses to the COVID-19 pandemic and consequences for maternal and neonatal health in remote Peruvian Amazon: a qualitative study based on routine programme supervision.

AIM: To explore indigenous communities' responses to the COVID-19 pandemic and its consequences for maternal and neonatal health (MNH) care in the Peruvian Amazon. METHODS: Mamás del Río is a community-based, MNH programme with comprehensive supervision covering monthly meetings with community health workers (CHW), community leaders and health facilities. With the onset of the lockdown, supervisors made telephone calls to discuss measures against COVID-19, governmental support, CHW activities in communities and provision of MNH care and COVID-19 preparedness at facilities. As part of the programme's ongoing mixed methods evaluation, we analysed written summaries of supervisor calls collected during the first 2 months of Peru's lockdown. RESULTS: Between March and May 2020, supervisors held two rounds of calls with CHWs and leaders of 68 communities and staff from 17 facilities. Most communities banned entry of foreigners, but about half tolerated residents travelling to regional towns for trade and social support. While social events were forbidden, strict home isolation was only practised in a third of communities as conflicting with daily routine. By the end of April, first clusters of suspected cases were reported in communities. COVID-19 test kits, training and medical face masks were not available in most rural facilities. Six out of seven facilities suspended routine antenatal and postnatal consultations while two-thirds of CHWs resumed home visits to pregnant women and newborns. CONCLUSIONS: Home isolation was hardly feasible in the rural Amazon context and community isolation was undermined by lack of external supplies and social support. With sustained community transmission, promotion of basic hygiene and mask use becomes essential. To avoid devastating effects on MNH, routine services at facilities need to be urgently re-established alongside COVID-19 preparedness plans. Community-based MNH programmes could offset detrimental indirect effects of the pandemic and provide an opportunity for local COVID-19 prevention and containment.

A community-based survey on influenza and vaccination knowledge, perceptions and practices in Peru.

BACKGROUND: Although Peru provides safe and effective influenza vaccines free-of-charge, coverage among vaccine target groups like pregnant women and older adults remains low. To improve risk communication messages and vaccine uptake, we explored knowledge, perceptions and practices about influenza illness and vaccination. METHODS: A cross-sectional, community-based survey with a three-stage cluster sampling design was conducted in three cities in Peru. We included mothers of young children, pregnant women and persons ≥65 years. Participants completed a questionnaire about knowledge, perceptions and practices about influenza illness and vaccination against influenza during the past year. Generalized linear models were used to explore factors associated with vaccination in the past year. RESULTS: 624/645 (97%) mothers, 54/55 (98%) pregnant women and 622/673 (92%) older adults approached provided informed consent and were surveyed. While most mothers, pregnant women and older adults (94%, 96% and 91%, respectively) perceived influenza as a potentially serious illness, few pregnant women (13%) and older adults (34%) self-identified themselves as a target group for influenza vaccination. Only 28% of mothers, 19% pregnant women, and 27% older adults were vaccinated against influenza during the previous year. Among the participants that did not get vaccinated against influenza in the previous year, "being afraid of vaccination and its effects" was the most commonly cited barrier. Knowledge of the recommendation for annual vaccination was significantly associated with vaccination status among pregnant women (p = 0.048) and older adults (p = 0.004). CONCLUSION: Despite a government subsidized vaccine program, vaccine utilization remained low among pregnant women and older adults, who seemed typically unaware of their status as high-risk groups targeted for vaccination. Those aware of the recommendations for annual vaccination were more likely to be vaccinated. Information campaigns addressing fears and highlighting populations at risk for severe influenza illness that are targeted for vaccination might increase vaccine coverage in Peru.

Psychometric evaluation of the 10-item Short Opiate Withdrawal Scale-Gossop (SOWS-Gossop) in patients undergoing opioid detoxification.

INTRODUCTION: The Short Opiate Withdrawal Scale (SOWS)-Gossop is a 10-item questionnaire developed to evaluate opioid withdrawal symptom severity. The scale was derived from the original 32-item Opiate Withdrawal Scale in order to reduce redundancy while providing an equally sensitive measure of opioid withdrawal symptom severity appropriate for research and clinical practice. The objective of this study was to examine the psychometric properties and provide score interpretation guidelines for the SOWS-Gossop 10-item version. METHODS: Blinded, pooled data from two trials assessing the efficacy of lofexidine hydrochloride in reducing withdrawal symptoms in patients undergoing opioid detoxification were used to evaluate the quantitative psychometric properties and score interpretation of the SOWS-Gossop. RESULTS: Five hundred fifty-five (N=555) observations were available at baseline with numbers decreasing to n=213 at day 7. Mean (standard deviation) SOWS-Gossop scores were 10.4 (6.86) at baseline, 8.7 (6.49) on day 1, 10.5 (7.21) on day 2, and 3.1 (3.95) on day 7. Confirmatory factor analysis indicated that the SOWS-Gossop items loaded on a single factor consistent with a single total score. Intra-class correlations (95% confidence interval) were 0.78 (0.70-0.85) between baseline and day 1, 0.84 (0.79-0.89) between days 4 and 5, and 0.88 (0.83-0.91) between days 6 and 7, demonstrating good test-retest reliability. Mean SOWS-Gossop scores varied significantly (p<0.0001) by Modified Clinical Global Impression severity groups supporting known-groups validity. Most correlations with conceptually similar instruments were over 0.4, providing evidence of construct validity. Results suggest that a change score of approximately 2-4 points is likely a small but meaningful improvement on the SOWS-Gossop Total Score. CONCLUSIONS: The findings of this study indicate that the SOWS-Gossop includes concepts that are relevant to patients' experiences with opioid withdrawal and has excellent psychometric properties. The SOWS-Gossop is an appropriate, precise, and sensitive measure to evaluate the symptoms of acute opioid withdrawal in research or clinical settings.

Scientific value of systematic reviews: survey of editors of core clinical journals.

BACKGROUND: Synthesizing research evidence using systematic and rigorous methods has become a key feature of evidence-based medicine and knowledge translation. Systematic reviews (SRs) may or may not include a meta-analysis depending on the suitability of available data. They are often being criticised as 'secondary research' and denied the status of original research. Scientific journals play an important role in the publication process. How they appraise a given type of research influences the status of that research in the scientific community. We investigated the attitudes of editors of core clinical journals towards SRs and their value for publication. METHODS: We identified the 118 journals labelled as "core clinical journals" by the National Library of Medicine, USA in April 2009. The journals' editors were surveyed by email in 2009 and asked whether they considered SRs as original research projects; whether they published SRs; and for which section of the journal they would consider a SR manuscript. RESULTS: The editors of 65 journals (55%) responded. Most respondents considered SRs to be original research (71%) and almost all journals (93%) published SRs. Several editors regarded the use of Cochrane methodology or a meta-analysis as quality criteria; for some respondents these criteria were premises for the consideration of SRs as original research. Journals placed SRs in various sections such as "Review" or "Feature article". Characterization of non-responding journals showed that about two thirds do publish systematic reviews. DISCUSSION: Currently, the editors of most core clinical journals consider SRs original research. Our findings are limited by a non-responder rate of 45%. Individual comments suggest that this is a grey area and attitudes differ widely. A debate about the definition of 'original research' in the context of SRs is warranted.

Distribution of country of origin in studies used in Cochrane Reviews.

BACKGROUND AND OBJECTIVE: Inclusion in systematic reviews is one important component in judging the potential impact of clinical studies upon practice and hence the 'value for money' of spending for clinical research. This study aims to quantify the distribution of countries of origin of clinical studies used in Cochrane Reviews (CRs), and to link these data to the size of a country and to its spending on research. METHODS: Random sample of publications used for CRs published in Issue 1 2008 and of publications used in CRs in the field of complementary and alternative medicine (CAM). Publications without original data were excluded. Likely countries of origin determined based on abstracts/full texts. CIA World Factbook (population data) and OECD database (economic data) were used. RESULTS: 1,000 random entries out of 140,005 references available in all specialities. In 876 (91.4%) of 959 eligible studies, country of origin was determined. The USA was the leading contributor (36.0% of the studies), followed by UK (13.4%), Canada (5.3%), Australia and Sweden (3.7%). In the CAM sample, country of origin was determined in 458 (93.5%) of 497 assessed studies. Again, the USA was the leading contributor (24.9%), with China also emerging as a significant contributor (24.7%) in this field. For both samples, the contribution of smaller countries (especially Scandinavian countries, Greece, and Ireland) became more noteworthy when considered in relation to population size and research spending. CONCLUSIONS: Our results support the leading roles of both the USA and the UK in publishing clinical papers. The emerging role of China can be seen, particularly related to CAM studies. Taking into account size of population and economic power, countries like France, Germany, Italy, and Spain provide small contributions. In contrast, smaller countries like Australia, Denmark, Finland, Ireland, New Zealand, and Sweden also play major roles.