The Scope of Practice for Primary Cardiovascular Disease Prevention Expanded to Advanced Practice Providers: What Does the Data Show?

PURPOSE OF REVIEW: The review aims to explore the available literature on the role of advance practice providers (APPs) in the primary prevention of cardiovascular diseases (CVD). RECENT FINDINGS: CVD are the major cause of death and disease with the growing burden of direct and indirect costs. Globally, one out of every three deaths is due to CVD. A total of 90% of CVD cases are due to modifiable risk factors which are preventable; however, challenges are faced by the already overburdened healthcare systems where the shortage of workforce is a common constraint. Different CVD preventive programs are working but, in a silo, and with different approaches except in few of the high-income countries where specialized workforce such as advance practice providers (APPs) is trained and employed in practice. Such initiatives are already proven more effective in terms of health and economic outcomes. Through an extensive literature search of APPs' role in the primary prevention of CVD, we identified very few high-income countries where APPs' role has already been integrated into the primary healthcare system. However, in low- and middle-income countries (LMICs), no such roles are defined. In these countries, either the overburdened physicians or any other health professionals (not trained in primary prevention of CVD) sometimes provide brief advice on CVD risk factors. Hence, prompt attention is appealed by the current scenario of CVD prevention specifically in LMICs.

Home-based cardiac rehabilitation: development, implementation and outcome evaluation in patients with coronary artery diseases in Lahore, Pakistan - a mixed-methods study protocol.

INTRODUCTION: Cardiac rehabilitation (CR) is an important strategy to bring cardiac patients back to a normal life after a cardiac event. The benefits of CR as part of secondary prevention are widely known among people who have undergone myocardial infarction or revascularisation. As evidenced by several systematic reviews and meta-analyses, home-based CR (HBCR) has similar or greater effects on health-related quality of life, health outcomes, physical activity, anxiety and unplanned visits to the emergency department as compared with centre-based CR. The purpose of this study is to develop a contextual HBCR intervention and evaluate its effects on quality of life, health behaviours, bio-physiological parameters and emergency hospital visits of patients with coronary artery diseases in Lahore, Pakistan. METHODS AND ANALYSIS: This study will employ a mixed-method exploratory sequential research design. The researchers will invite 15-20 cardiac patients and 12-15 healthcare providers for semi-structured interviews in the qualitative phase of the study. Once the intervention is developed and validated through the qualitative phase, the outcomes will be evaluated through a single-blinded randomised control trial in the quantitative phase. A total of 118 patients with acute coronary syndrome will be recruited through a screening checklist and randomly allocated into the control and intervention groups (59 patients in each group). The inductive coding approach will be used for the thematic analysis of qualitative data, whereas the quantitative data will be analysed through descriptive and inferential statistics using SPSS to see the difference within the groups, between groups and between three intervals. ETHICS AND DISSEMINATION: The Ethical Review Committee of Aga Khan University and Mayo Hospital Lahore under the registration number 2023-8282-24191 and No/75749MH have approved this study protocol, respectively. The results of this study will be disseminated to participating patients (in the Urdu language), healthcare professionals and the public by publishing the manuscript in an open-access peer-reviewed journal and presenting it at different conferences. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trial Registry (ACTRN12623000049673p).

Health related quality of life in adults after late repair of tetralogy of fallot: experience from a low-middle income country.

PURPOSE: Without neonatal screening in low middle-income countries like Pakistan, Tetralogy of Fallot (TOF) is a congenital heart disease which frequently remains untreated beyond infancy. The purpose of this study is to determine and assess outcomes and health related quality of life (HRQOL) in patients who undergo complete repair of TOF as adults. METHODS: 56 patients who underwent complete TOF repair after 16 years of age were included. Patient data was collected via retrospective chart review, and a semi structured interview along with Short-Form 36 (SF-36) questionnaire were used to assess HRQOL. RESULTS: 66.1% of patients were male with the mean age at surgery of 22.3 ± 6.00. All patients had a post-operative NYHA Classification of I or II, 94.6% had an ejection fraction of ≥ 50% and 28.6% showed small residual lesions in follow-up echocardiograms. 32.1% of patients suffered post-operative morbidity. For the quantitative assessment using SF-36 scores, patients showed good scores of median 95 (65-100). A major cause of delay to treatment was lack of consensus between treatments offered by doctors in different parts of Pakistan. There was a pattern of 'inability to fit in' among patients who had had late TOF repair, despite self- reported improved HRQOL. CONCLUSION: Our results indicate that even with a delayed diagnosis, surgical repair of TOF produces good functional results. However, these patients face significant psychosocial issues. While early diagnosis remains the ultimate goal, patients undergoing late repair should be managed in more holistic manner with attention to psychological impact of the disease as well.

Exercise Self-efficacy Improvements During Cardiac Rehabilitation: IMPACT OF SOCIAL DISPARITIES.

PURPOSE: The objective of this study was to determine exercise self-efficacy improvements during cardiac rehabilitation (CR) and identify predictors of exercise self-efficacy change in CR participants. METHODS: Patients with coronary heart disease at four metropolitan CR sites completed the Exercise Self-efficacy Scale at entry and completion. A general linear model identified independent predictors of change in exercise self-efficacy. RESULTS: The mean age of patients (n = 194) was 65.9 ± 10.5 yr, and 81% were males. The majority (80%) were married or partnered, 76% were White, and 24% were from an ethnic minority background. Patients received CR in-person (n = 91, 47%) or remote-delivered (n = 103, 54%). Exercise self-efficacy mean scores improved significantly from 25.2 ± 5.8 at CR entry to 26.2 ± 6.3 points at completion ( P = .025). The majority of patients (59%) improved their self-efficacy scores, 34% worsened, and 7% had no change. Predictors of reduced exercise self-efficacy change were being from an ethnic minority (B =-2.96), not having a spouse/partner (B =-2.42), attending in-person CR (B =1.75), and having higher exercise self-efficacy at entry (B =-0.37) (adjusted R2 = 0.247). CONCLUSIONS: Confidence for self-directed exercise improves in most, but not all, patients during CR. Those at risk for poor improvement (ethnic minorities, single patients) may need extra or tailored support, and screening for exercise self-efficacy at CR entry and completion is recommended. Differences identified from CR delivery mode need exploration using robust methods to account for complex factors.

Issues related to pregnancy, pregnancy prevention and abortion in the context of the COVID-19 pandemic: a WHO qualitative study protocol.

INTRODUCTION: WHO has generated standardised clinical and epidemiological research protocols to address key public health questions for SARS-CoV-2 (COVID-19) pandemic. We present a standardised protocol with the aim to fill a gap in understanding the needs, attitudes and practices related to sexual and reproductive health in the context of COVID-19 pandemic, focusing on pregnancy, pregnancy prevention and abortion. METHODS AND ANALYSIS PLAN: This protocol is a prospective qualitative research, using semi-structured interviews with at least 15 pregnant women at different gestational ages and after delivery, 6 months apart from the first interview. At least 10 partners, 10 non-pregnant women and 5 healthcare professionals will be interviewed once during the course of the research. Higher number of subjects may be needed if a saturation is not achieved with these numbers. Data collection will be performed in a standardised way by skilled trained interviewers using written notes or audio-record of the interview. The data will be explored using the thematic content analysis and the researchers will look for broad patterns, generalisations or theories from these categories. ETHICS AND DISSEMINATION: The current protocol was first technically assessed and approved by the WHO scientific committee and then approved by its ethics review committee as a guidance document. It is expected that each country/setting implementing such a generic protocol adapted to their conditions also obtain local ethical approval. Comments for the user's consideration are provided the document, as the user may need to modify methods slightly because of the local context in which this study will be carried out.

Measurement of sound levels in a neonatal intensive care unit of a tertiary care hospital, Karachi, Pakistan.

BACKGROUND: High sound levels in the neonatal intensive care unit (NICU) can alter preterm newborn hemodynamics and cause long-term neuro-developmental delays and hearing loss. The study aims to collate data on sound levels in a level IV NICU of a tertiary care hospital, identify the factors associated with them, and compare them with the international standards set by the World Health Organization (WHO), Environmental Protection Agency (EPA), and American Academy of Pediatrics (AAP). METHODS: We carried out a cross-sectional study in NICU from 8th April 2019 to 30th June 2019. Sound levels were recorded for 480 h, using a portable sound meter, the Larson Davis 824. We captured sound levels on alternate days, during different shifts and shift changes and in open pods and single isolation rooms within the NICU. Additionally, we documented the total census, acuity of care, number of staff, number of procedures, and number of items of equipment used. The data was analyzed using t-test, ANOVA, and logistic regression. RESULTS: The average sound level (Leq) and the maximum level (Lmax) recorded were 60.66 ± 2.99 dBA and 80.19 ± 2.63 dBA, respectively, which exceeds international recommendations. The sound level gradually decreased from morning to night hours. The major increase in sound was observed during nursing shift change. Similarly, a significant increase in sound was observed in open bays compared to isolation rooms. However, no difference in sound levels was recorded during weekdays and weekends. The number of healthcare professionals and the number of procedures performed were strongly associated with an increased noise level. CONCLUSION: Sound levels in NICU were beyond the safety range and international recommendations. We observed a significant sound increment during morning hours and at the time of nursing shift change. High sound levels were associated with increased number of healthcare workers and bedside procedures in NICU.

Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease.

BACKGROUND: In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II. METHODS/DESIGN: APPROACH-IS II is a cross-sectional global multicentric study that includes Part 1 (assessing PROs) and Part 2 (investigating the frailty phenotype of older adults). With 53 participating centers, located in 32 countries across six continents, the aim is to enroll 8000 patients with CHD. In Part 1, self-report surveys are used to collect data on PROs (e.g., quality of life, perceived health, depressive symptoms, autonomy support), and explanatory variables (e.g., social support, stigma, illness identity, empowerment). In Part 2, the cognitive functioning and frailty phenotype of older adults are measured using validated assessments. DISCUSSION: APPROACH-IS II will generate a rich dataset representing the international experience of individuals in adult CHD care. The results of this project will provide a global view of PROs and the frailty phenotype of adults with CHD and will thereby address important knowledge gaps. Undoubtedly, the project will contribute to the overarching aim of improving optimal living and care provision for adults with CHD.

Smoking cessation interventions in South Asian Region: a systematic scoping review.

BACKGROUND: Cigarette smoking is one of the most preventable causes of morbidities and mortalities. Since 2005, the World Health Organization Framework Convention for Tobacco Control (WHO-FCTC) provides an efficient strategic plan for tobacco control across the world. Many countries in the world have successfully reduced the prevalence of cigarette smoking. However, in developing countries, the prevalence of cigarette smoking is mounting which signifies a need of prompt attention. This scoping review aims to explore the extent and nature of Smoking Cessation (SmC) interventions and associated factors in South Asian Region (SAR) by systematically reviewing available recently published and unpublished literature. METHODS: The Joanna Briggs Institute (JBI) framework frames the conduct of this scoping review. PubMed, EBSCO CINAHL Complete, Cochrane Library, ProQuest Dissertation and Theses, and local websites as well as other sources of grey literature were searched for relevant literature. In total, 573 literature sources were screened. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram, finally, 48 data sources were included for data extraction and analysis. We analyzed the extracted SmC interventions through the FCTC. Factors that affect smoking cessation interventions will be extracted through manual content analysis. RESULTS: Regarding FCTC recommended smoking cessation strategies (articles), most of the articles were either neglected or addressed in a discordant way by various anti-smoking groups in SAR. Key barriers that hamper the effectiveness of smoking cessation interventions included lack of awareness, poor implementation of anti-smoking laws, and socio-cultural acceptance of tobacco use. Conversely, increased levels of awareness, through different mediums, related to smoking harms and benefits of quitting, effective implementation of anti-smoking laws, smoking cessation trained healthcare professionals, support systems, and reluctance in the community to cigarette smoking were identified as facilitators to smoking cessation interventions. CONCLUSION: The ignored or uncoordinated FCTC's directions on smoking cessation strategies have resulted in continued increasing prevalence of cigarette smoking in developing countries, especially SAR. The findings of this review highlight the need for refocusing the smoking cessation strategies in SAR. STRENGTHS: The review was conducted by a team of expert comprising information specialists, and senior professors bringing rich experience in systematic and scoping reviews. Every effort was made to include all available literature sources addressing cigarette SmC and associated factors in SAR. The review findings signal the need and direction for more SmC efforts in SAR which may contribute to development of effective policies and guidelines for the control of smoking prevalence. LIMITATIONS: Despite efforts, potentially relevant records may have been missed due to unpublished or inaccessible articles, unintended selection bias, or those published in local languages, etc. Moreover, the exclusion of literature on under 18 participants and mentally ill smokers may limit the generalizability of findings.

Validation of the PROMIS-29v2 Health-Related Quality-of-Life Questionnaire in Patients With Coronary Heart Disease Participating in Remote Cardiac Rehabilitation.

PURPOSE: The aim of this study was to validate the 29-item Patient-Reported Outcomes Measurement Information System version 2.0 (PROMIS-29v2) health-related quality-of-life (HRQL) questionnaire for use in patients with coronary heart disease (CHD) participating in remotely delivered cardiac rehabilitation (CR). METHODS: Patients commencing remote CR across four sites in New South Wales, Australia, answered the PROMIS-29v2 and 12-item Short Form Health Survey version 2.0 (SF-12v2) questionnaires at CR entry and completion (6 wk). The data were analyzed for validity, reliability, and responsiveness to change. RESULTS: Patients (N = 89) had a mean age of 66.9 ± 9.3 yr; 83% were male and were referred to CR for elective percutaneous coronary intervention (PCI) (42%), myocardial infarction (36%), and coronary artery bypass grafting (22%). Internal consistency reliability was adequate, with the Cronbach α ranging from 0.78-0.98. Convergent validity between the PROMIS-29v2 and SF-12v2 summary scores showed significantly strong correlations for physical ( r = 0.62) and moderate for mental ( r = 0.36) health. Discriminant validity was confirmed for sex (women reported lower physical and mental health) and referral diagnosis (patients who had elective PCI reported better physical health). Effect size (ES) comparisons confirmed responsiveness to change from CR entry to completion in physical health (ES = 0.51) and demonstrated evidence of more responsiveness than SF-12v2 for mental health (ES = 0.70). CONCLUSION: The PROMIS-29v2 is reliable, valid, and responsive to changes in patients with CHD attending remotely delivered CR and allows for baseline HRQL assessment, between-diagnosis comparisons, and evaluation of changes over time.

Remote-delivered cardiac rehabilitation during COVID-19: a prospective cohort comparison of health-related quality of life outcomes and patient experiences.

AIMS: Enforced suspension and reduction of in-person cardiac rehabilitation (CR) services during the coronavirus disease-19 (COVID-19) pandemic restrictions required rapid implementation of remote delivery methods, thus enabling a cohort comparison of in-person vs. remote-delivered CR participants. This study aimed to examine the health-related quality of life (HRQL) outcomes and patient experiences comparing these delivery modes. METHODS AND RESULTS: Participants across four metropolitan CR sites receiving in-person (December 2019 to March 2020) or remote-delivered (April to October 2020) programmes were assessed for HRQL (Short Form-12) at CR entry and completion. A General Linear Model was used to adjust for baseline group differences and qualitative interviews to explore patient experiences. Participants (n = 194) had a mean age of 65.94 (SD 10.45) years, 80.9% males. Diagnoses included elective percutaneous coronary intervention (40.2%), myocardial infarction (33.5%), and coronary artery bypass grafting (26.3%). Remote-delivered CR wait times were shorter than in-person [median 14 (interquartile range, IQR 10-21) vs. 25 (IQR 16-38) days, P < 0.001], but participation by ethnic minorities was lower (13.6% vs. 35.2%, P < 0.001). Remote-delivered CR participants had equivalent benefits to in-person in all HRQL domains but more improvements than in-person in Mental Health, both domain [mean difference (MD) 3.56, 95% confidence interval (CI) 1.28, 5.82] and composite (MD 2.37, 95% CI 0.15, 4.58). From qualitative interviews (n = 16), patients valued in-person CR for direct exercise supervision and group interactions, and remote-delivered for convenience and flexibility (negotiable contact times). CONCLUSION: Remote-delivered CR implemented during COVID-19 had equivalent, sometimes better, HRQL outcomes than in-person, and shorter wait times. Participation by minority groups in remote-delivered modes are lower. Further research is needed to evaluate other patient outcomes.

Assessing Health-Related Quality of Life, Morbidity, and Survival Status for Individuals With Down Syndrome in Pakistan (DS-Pak): Protocol for a Web-Based Collaborative Registry.

BACKGROUND: Down syndrome is the most common chromosomal disorder, with a global incidence of 1 in 700 live births. However, the true prevalence, associated morbidities, and health-related quality of life (HRQOL) of these individuals and their families are not well documented, especially in low- and middle-income countries such as Pakistan. Disease-specific documentation in the form of a collaborative registry is required to better understand this condition and the associated health outcomes. This protocol paper describes the aims and processes for developing the first comprehensive, web-based collaborative registry for Down syndrome in a Pakistani cohort. OBJECTIVE: This study aims to assess the HRQOL, long-term survival, and morbidity of individuals with Down syndrome by using a web-based collaborative registry. METHODS: The registry data collection will be conducted at the Aga Khan University Hospital and at the Karachi Down Syndrome Program. Data will be collected by in-person interviews or virtually via telephone or video interviews. Participants of any age and sex with Down syndrome (trisomy 21) will be recruited. After receiving informed consent and assent, a series of tablet-based questionnaires will be administered. The questionnaires aim to assess the sociodemographic background, clinical status, and HRQOL of the participants and their families. Data will be uploaded to a secure cloud server to allow for real-time access to participant responses by the clinicians to plan prompt interventions. Patient safety and confidentiality will be maintained by using multilayer encryption and unique coded patient identifiers. The collected data will be analyzed using IBM SPSS Statistics for Windows, Version 22.0 (IBM Corporation), with the mean and SD of continuous variables being reported. Categorical variables will be analyzed with their percentages being reported and with a P value cutoff of .05. Multivariate regression analysis will be conducted to identify predictors related to the HRQOL in patients with Down syndrome. Survival analysis will be reported using the Kaplan-Meier survival curves. RESULTS: The web-based questionnaire is currently being finalized before the commencement of pilot testing. This project has not received funding at the moment (ethical review committee approval reference ID: 2020-3582-11145). CONCLUSIONS: This registry will allow for a comprehensive understanding of Down syndrome in low- and middle-income countries. This can provide the opportunity for data-informed interventions, which are tailored to the specific needs of this patient population and their families. Although this web-based registry is a proof of concept, it has the potential to be expanded to national, regional, and international levels. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/24901.

Health-related quality of life in adults with tetralogy of Fallot repair: a systematic review and meta-analysis.

BACKGROUND: With the advancement in diagnostics and clinical management, patients with Tetralogy of Fallot (ToF) are surviving till adulthood. Hence, assessing the impact of ToF repair on health-related quality of life (HRQOL) of these patients is becoming increasingly important. The objective of this paper is to conduct a systematic review and meta-analysis of the HRQOL in patients who have undergone ToF repair. METHODS: A systematic search was conducted using PubMed, CINAHL, Medline and Web of Science databases. Studies that compared the HRQOL of adult patients (mean age ≥ 18 years) who had previously undergone ToF repair with healthy controls were included. Analysis was done via Revman V5.3 using a random effects model. RESULTS: The 16 studies (15 using SF-36) included in the meta-analysis, comprised 1818 patients and 50,265 healthy controls. There was a higher proportion of males (59%). The mean ages at surgery and at HRQOL assessment were 5.37 years and 30.3 years, respectively. We found that repaired ToF patients had a statistically significantly lower score in the physical component summary (SMD = - 0.92 CI = - 1.54, - 0.30) and physical functioning (SMD = - 0.27 CI = - 0.50, - 0.03) compared to healthy controls. However, these patients had statistically significantly higher scores in the bodily pain domain (SMD = 0.35 CI = 0.12, 0.58) and social functioning (SMD = 0.23 CI = 0.01, 0.46), while there was no significant difference in other domains. CONCLUSION: Overall, physical domain of HRQOL was statistically significantly lower in repaired ToF patients compared to healthy controls. However, repaired ToF patients scored significantly higher on bodily pain and Social Functioning. There was additionally no difference in the HRQOL between the two groups in other domains of HRQOL.

Smoking cessation interventions in South Asian countries: protocol for scoping review.

INTRODUCTION: Unfortunately, like many other health risks, smoking rate has been on the rise in developing countries. Half of current smokers in the world reside in only three countries of Asia that include India. Many smoking cessation interventions that were developed and successfully implemented in the context of developed countries have not been equally successful in South Asia. Hence, there is a dire need of culturally relevant smoking cessation interventions. We propose a scoping review with objectives to explore the extent and nature of interventions for smoking cessation and its associated factors in South Asian Region by systematically reviewing the available published and unpublished literature. METHODS AND ANALYSIS: The review has been registered in Joanna Briggs Institute (JBI) systematic reviews register and details are given in the Methodology section. The updated framework of JBI for scoping review methodology will be used as guide for conduct of this scoping review. Electronic databases (PubMed, CINAHL plus, Proquest Theses and Dissertations, EBSCO Dentistry and Oral Sciences, and Wiley Cochrane Library), reference lists of selected studies and grey literature will be considered for inclusion in this review. The literature search is anticipated to be carried out in December-January 2020. Initially, two reviewers in consultation with a librarian will develop search syntax followed by search from the selected sources. Consequently, the reviewers will screen all the titles, abstracts and full articles to establish relevance of each study for inclusion. Factors associated with smoking cessation will be coded and categorised applying qualitative content analysis, while interventions extracted from the literature will be described with the stated level of effectiveness.

Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group.

AIMS: Congenital heart disease (CHD) is the most common congenital malformation. Despite the worldwide burden to patient wellbeing and health system resource utilization, tracking of long-term outcomes is lacking, limiting the delivery and measurement of high-value care. To begin transitioning to value-based healthcare in CHD, the International Consortium for Health Outcomes Measurement aligned an international collaborative of CHD experts, patient representatives, and other stakeholders to construct a standard set of outcomes and risk-adjustment variables that are meaningful to patients. METHODS AND RESULTS: The primary aim was to identify a minimum standard set of outcomes to be used by health systems worldwide. The methodological process included four key steps: (i) develop a working group representative of all CHD stakeholders; (ii) conduct extensive literature reviews to identify scope, outcomes of interest, tools used to measure outcomes, and case-mix adjustment variables; (iii) create the outcome set using a series of multi-round Delphi processes; and (iv) disseminate set worldwide. The Working Group established a 15-item outcome set, incorporating physical, mental, social, and overall health outcomes accompanied by tools for measurement and case-mix adjustment variables. Patients with any CHD diagnoses of all ages are included. Following an open review process, over 80% of patients and providers surveyed agreed with the set in its final form. CONCLUSION: This is the first international development of a stakeholder-informed standard set of outcomes for CHD. It can serve as a first step for a lifespan outcomes measurement approach to guide benchmarking and improvement among health systems.

Shorter Wait Times to Cardiac Rehabilitation Associated With Greater Exercise Capacity Improvements: A MULTISITE STUDY.

PURPOSE: Comprehensive exercise-based cardiac rehabilitation (CR) results in improved, though highly variable, exercise capacity outcomes. Whether modifiable factors such as CR program wait time and session duration are associated with exercise capacity outcomes has not been adequately investigated. METHODS: Patients with coronary heart disease (±primary and elective percutaneous coronary interventions, cardiac surgery) who participated in CR programs involved in a three-state audit (n = 32 sites) were eligible. Exercise capacity was measured using the 6-min walk test before and after a 6- to 12-wk supervised exercise program. CR program characteristics were also recorded (wait time, number of sessions). Correlations and linear mixed-effects models were used to identify associations between sociodemographic and CR program characteristics and change in exercise capacity. RESULTS: Patients (n = 894) had a mean age of 65.9 ± 11.8 yr, 71% were males, 33% were referred for cardiac surgery, and median wait time was 16 d (interquartile range 9, 26). Exercise capacity improved significantly and clinically (mean increase 70.4 ± 61.8 m). After adjusting for statistically significant factors including younger age (<50 vs ≥80 yr [ß = 52.07]), female sex (ß = -15.86), exercise capacity at CR entry (ß = 0.22) and those nonsignificant (ethnicity, risk factors, and number of sessions), shorter wait time was associated with greater exercise capacity improvement (ß = 0.23). CONCLUSIONS: This study confirms that greater exercise capacity improvements occur with shorter wait times. Coordinators should prioritize implementing strategies to shorten wait time to optimize the benefits of CR.

Exploring the influence of socio-cultural factors and environmental resources on the health related quality of life of children and adolescents after congenital heart disease surgery: parental perspectives from a low middle income country.

BACKGROUND: Health related quality of life (HRQOL) is an important indicator of long-term well-being, influenced by environmental factors such as family, culture, societal norms and available resources. This study aimed to explore parental perspectives on the influence of socio-cultural factors and environmental resources on the HRQOL of children and adolescents after congenital heart disease (CHD) surgery. METHODS: Using a descriptive, qualitative design, semi-structured interviews of children/adolescents who had CHD surgery in this low-middle income country (LMIC) were collected between July to December 2017. There were 20 families enrolled, which included 18 parent dyads (mother and father) and two single mothers, making a total of 38 participants. Initial inductive analysis was further refined using the Social Ecological Model as an analytic lens. RESULTS: At the intrapersonal level, unrealistic expectations of surgery, residual CHD symptoms and difficulty maintaining educational progress were of great concern. There were low levels of health literacy and understanding about CHD among family and friends, however, strong kinship ties were an important resource at the interpersonal level. These families lived in poverty and mothers often carried the sole burden of care for their sick children. At the institutional level, there were unclear expectations of the child's needs at school, and parents had poor access to psychological, family-planning and genetic counselling, and poor access to CHD education resources. At a sociocultural level, religion and trust in God were important coping factors, however, CHD was a gendered experience with particular concerns around scarring and the marriageability of girls. Parents noted the deficit of antenatal and specialist CHD services and felt the consequence of a lack of a universal health care system at the public policy level. CONCLUSION: Socio-ecological factors have the potential to explain the issues and challenges that children living in LMIC experience with CHD after surgery. The study findings will help to inform future interventions to be implemented in countries like Pakistan.

Health-related quality of life in adult CHD surgical patients in a low middle-income country: a mixed-methods study.

BACKGROUND AND OBJECTIVES: This mixed-methods study aimed to assess health-related quality of life in young adults with CHD following surgery in a low middle-income country, Pakistan. Despite the knowledge that geographic, cultural and socio-economic factors may shape the way health and illness is experienced and managed and consequently determine a person's health-related quality of life, few health-related quality of life studies are conducted in low middle-income countries. This deficit is pronounced in CHD, so there is little guidance for patient care. METHODS: The study utilised concurrent, mixed methods. Adults with CHD (n = 59) completed health-related quality of life surveys (PedsQLTM 4.0 Generic Core Scale, PedsQLTM Cognitive Functioning Scale and PedsQLTM 3.0 Cardiac Module). Semi-structured interview data were collected from a nested sub-sample of 17 participants and analysed using qualitative content analysis, guided by the revised Wilson-Cleary model of health-related quality of life. RESULTS: The lowest health-related quality of life domain was emotional with the mean score (71.61 ± 20.6), followed by physical (78.81 ± 21.18) and heart problem (79.41 ± 18.05). There was no statistical difference in general or cardiac-specific health-related quality of life between mild, moderate or complex CHD. Qualitative findings suggested low health-related quality of life arose from a reduced capacity to contribute to family life including family income and gender. A sense of reduced marriageability and fear of dependency were important socio-cultural considerations. CONCLUSIONS: CHD surgical patients in this low-income country experience poor health-related quality of life, and contributing factors differ to those reported for high-income countries. Socio-cultural understandings should underpin assessment, management and care-partnering with young adults with CHD following surgical correction.

Evaluation of Cardiac Rehabilitation Performance and Initial Benchmarks for Australia: An Observational Cross-State and Territory Snapshot Study.

BACKGROUND: Australia, unlike most high-income countries, does not have published benchmarks for cardiac rehabilitation (CR) delivery. This study provides cross-state data on CR delivery for initial benchmarks and assesses performance against international minimal standards. METHODS: A prospective observational study March-May 2017 of CR programs in NSW (n=36), Tasmania (n=2) and ACT (n=1) was undertaken. Data were collected on 11 indicators (published dictionary), then classified as higher or lower performing using the UK National Audit of Cardiac Rehabilitation (NACR) criteria. Equity of access to higher performing CR was assessed using logistic regression. RESULTS: Participants (n=2,436) had a mean age of 66.06±12.54 years, 68.9% were male, 16.2% culturally and linguistically diverse (CALD) and 2.6% Aboriginal and Torres Strait Islander peoples. At patient level, waiting time was median 15 (Interquartile range [IQR] 9-25) days, 24.3% had an assessment before starting, 41.8% on completion, a median 12 sessions (IQR 6-16) were delivered, which 59.1% completed and 75.4% were linked to ongoing care. At program level, using NACR criteria, 18.0% were classified as higher performing and ≥87.1% met waiting time criteria, however, only 20.5% met duration criteria. Evidence of inequitable access to higher performing programs was present with substantially higher odds for participants living in major cities (OR 28.11 95%CI 18.41, 44.92) and with every decade younger age (OR 1.89-2.94) and lower odds by 89.0% for principal referral hospital-based services (OR 0.11 95%CI 0.08, 0.14) and 31.0% for people having a CALD background (OR 0.69 95%CI 0.49, 0.97). CONCLUSIONS: This study provides initial national CR performance benchmarks for quality improvement in Australia. While wait times are minimised, few programs are higher performing or met minimum duration standards. There is an urgent need to resource and support CR quality and access outside of major cities, in principal referral hospitals and for older and diverse patients.

Adult congenital cardiac life-long needs evaluation in a low-middle income country, Pakistan.

OBJECTIVE: Adult congenital heart diseases (ACHD) have distinct health care needs that require life-long care. Limited data is available from low-middle income countries (LMIC). This descriptive study conducted in Pakistan, aimed to assess patients and health care professionals understanding of the needs for ACHD care and the perceived barriers to care. METHODS: A telephone survey was conducted of ACHD patients. An e mail survey was sent to the paediatric and adult cardiologists of five institutions (3 public and 2 private) that provide ACHD services in Pakistan. Descriptive statistics (frequencies, mean ± SD, median) were used for data analysis. RESULTS: A total of 128 ACHD patients were surveyed, 65 (51%) were females with a mean age of 29.4±10.4 years. Atrial septal defect repair was the most common surgical procedure. Mean age at surgery was 25.6±10.49 years, and a surgical follow-up period of 3.8±2.3 years. Majority (n=3, 60%) of the health care professionals (HCPs) responded that 75-100% of the ACHD surgical patients would need lifelong care, yet 10-25% return to their cardiology clinics. Most of the surveyed ACHD patients (89%, n=114) demonstrated a lack of understanding of life-long care after surgery due to not being communicated by their HCPs. Cost and travelling issues were the barriers highlighted by HCPs. Both ACHD patients (96%, n=122) and HCP (100%, n=5) underscored their interest in life long care. CONCLUSIONS: Majority of ACHD patients in Pakistan did not know that life-long follow-up is needed. Education regarding lifelong care for ACHD patients was identified as a means to alleviate the knowledge gap.