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1.
Qual Life Res ; 32(11): 3063-3074, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37318695

RESUMO

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.


Assuntos
Tetralogia de Fallot , Recém-Nascido , Humanos , Masculino , Adulto , Feminino , Tetralogia de Fallot/cirurgia , Qualidade de Vida/psicologia , Estudos Retrospectivos , Países em Desenvolvimento , Inquéritos e Questionários , Resultado do Tratamento
2.
Curr Cardiol Rep ; 25(7): 735-746, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37285105

RESUMO

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.


Assuntos
Doenças Cardiovasculares , Médicos , Humanos , Doenças Cardiovasculares/prevenção & controle , Âmbito da Prática , Atenção à Saúde , Fatores de Risco , Prevenção Primária
3.
Qual Life Res ; 30(10): 2715-2725, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34021473

RESUMO

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.


Assuntos
Qualidade de Vida , Tetralogia de Fallot , Adolescente , Adulto , Humanos , Masculino , Qualidade de Vida/psicologia , Tetralogia de Fallot/cirurgia
4.
J Pak Med Assoc ; 70(12(B)): 2332-2338, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33475538

RESUMO

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.


Assuntos
Cardiopatias Congênitas , Adulto , Criança , Feminino , Instalações de Saúde , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/cirurgia , Humanos , Masculino , Avaliação das Necessidades , Paquistão , Inquéritos e Questionários , Adulto Jovem
5.
Heart Lung Circ ; 28(11): 1622-1630, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30220480

RESUMO

BACKGROUND: International guidelines recommend cardiac rehabilitation (CR) for secondary prevention of cardiovascular disease, however, it is underutilised and the quality of content and delivery varies widely. Quality indicators (QIs) for CR are used internationally to measure clinical practice performance, but are lacking in the Australian context. This study reports the development of QIs for minimum dataset (MDS) for CR and the results of a pilot test for feasibility and applicability in clinical practice in Australia. METHODS: A modified Delphi method was used to develop initial QIs which involved a consensus approach through a series of face-to-face and teleconference meetings of an expert multidisciplinary panel (n=8), supplemented by an environmental scan of the literature and a multi-site pilot test. RESULTS: Eight (8) QIs were proposed and sent to CR clinicians (n=250) electronically to rate importance, current data collection status, and feasibility of future collection. The top six of these QIs were selected with an additional two key performance indicators from the New South Wales (NSW) Ministry of Health and two QIs from international registers for a draft MDS. The pilot test in 16 sites (938 patient cases) demonstrated median performance of 93% (IQR 47.1-100%). All 10 QIs were retained and one further QI related to diabetes was added for a final draft MDS. CONCLUSIONS: The MDS of 11 QIs for CR provides an important foundation for collection of data to promote the quality of CR nationally and the opportunity to participate in international benchmarking.


Assuntos
Reabilitação Cardíaca/normas , Doenças Cardiovasculares/prevenção & controle , Consenso , Indicadores de Qualidade em Assistência à Saúde/organização & administração , Prevenção Secundária/métodos , Austrália , Doenças Cardiovasculares/epidemiologia , Técnica Delphi , Humanos , Morbidade/tendências , Projetos Piloto , Prevenção Secundária/normas
7.
J Cardiopulm Rehabil Prev ; 43(3): 179-185, 2023 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-36730614

RESUMO

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.


Assuntos
Reabilitação Cardíaca , Masculino , Humanos , Feminino , Reabilitação Cardíaca/métodos , Autoeficácia , Etnicidade , Grupos Minoritários , Exercício Físico , Terapia por Exercício
8.
JACC Adv ; 2(10): 100716, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38938496

RESUMO

As health care outcomes improve the priority for those living with adult congenital heart disease have changed to a more holistic focus on quality of life and well-being. Although health care has embraced this, there are still areas where there is a deficit in advice, allyship, and advocacy. One of these deficits is in the area of sexual health and well-being. A healthy sexual life has a myriad of physical and psychosocial benefits. However, individuals with adult congenital heart disease may have significant barriers to achieving well-being in this aspect of their lives. These barriers and their potential solutions are outlined in this paper.

9.
J Cardiopulm Rehabil Prev ; 42(4): 246-251, 2022 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-35135960

RESUMO

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.


Assuntos
Reabilitação Cardíaca , Doença das Coronárias , Intervenção Coronária Percutânea , Idoso , Doença das Coronárias/reabilitação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários
10.
Eur J Cardiovasc Nurs ; 21(7): 732-740, 2022 10 14.
Artigo em Inglês | MEDLINE | ID: mdl-35137049

RESUMO

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.


Assuntos
COVID-19 , Reabilitação Cardíaca , Idoso , Reabilitação Cardíaca/métodos , Feminino , Humanos , Masculino , Avaliação de Resultados da Assistência ao Paciente , Estudos Prospectivos , Qualidade de Vida
11.
Int J Cardiol ; 363: 30-39, 2022 09 15.
Artigo em Inglês | MEDLINE | ID: mdl-35780933

RESUMO

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.


Assuntos
Fragilidade , Cardiopatias Congênitas , Estudos Transversais , Fragilidade/diagnóstico , Fragilidade/epidemiologia , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/psicologia , Humanos , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida
12.
JMIR Res Protoc ; 10(6): e24901, 2021 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-34081014

RESUMO

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.

13.
Eur Heart J Qual Care Clin Outcomes ; 7(4): 354-365, 2021 07 21.
Artigo em Inglês | MEDLINE | ID: mdl-33576374

RESUMO

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.


Assuntos
Cardiopatias Congênitas , Avaliação de Resultados em Cuidados de Saúde , Adulto , Criança , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/terapia , Humanos , Avaliação de Resultados em Cuidados de Saúde/métodos , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários
14.
Arch Dis Child ; 104(4): 340-347, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-29572215

RESUMO

BACKGROUND: As survival improves in the congenital heart disease (CHD) population, health-related quality of life (HRQOL) outcomes become increasingly important. While surgery improves survival, poor HRQOL occurs postoperatively and cardiac-related HRQOL outcomes are rarely reported. OBJECTIVE: To conduct a systematic review and meta-analyses of general and cardiac-related HRQOL in CHD surgical children and young adults. METHOD: Medline, CINAHL and EMBASE were searched. Quantitative designs with a minimum of 80% CHD surgical patients and mean age ≤18 years compared with healthy controls were included in the review. Data were analysed in RevMan V.5.3 using a random effects model. OUTCOME MEASURES: General and cardiac-related HRQOL. RESULTS: Studies (n=20) were conducted in high-income countries and included 3808 patients plus 2951 parental reports of patients. HRQOL was worse in postoperative patients with CHD versus healthy controls in all domains with the largest difference seen for physical function (standard mean difference (SMD) of -0.56, 95% CI -0.82 to -0.30). Cardiac-related HRQOL was worse in complex compared with simple CHD with the largest SMD (-0.60, 95% CI -0.80 to -0.40) for symptoms. Heterogeneity ranged from 0% to 90%. CONCLUSIONS: CHD surgical patients have substantially worse HRQOL compared with age-matched healthy controls. Strategies should focus on improving HRQOL in this subgroup. Results may not be applicable to low/middle-income countries given the dearth of relevant research.


Assuntos
Cardiopatias Congênitas/psicologia , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Comunicação , Feminino , Disparidades nos Níveis de Saúde , Cardiopatias Congênitas/cirurgia , Humanos , Masculino
15.
Arch Dis Child ; 104(5): 419-425, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30554150

RESUMO

OBJECTIVE: Inconsistencies have been reported in health-related quality of life (HRQOL) in postoperative congenital heart disease (CHD). Despite the need for lifelong care due for residual symptoms, only a few studies have explored cardiac-related HRQOL but none in lower middle-income countries (LMIC). This study therefore addresses the gap by exploring HRQOL and its associated predictors in postoperative CHD in Pakistan. OUTCOME MEASURES: General and cardiac-related HRQOL, associated predictors. METHODS: This cross-sectional study recruited patients with CHD and age-matched healthy siblings as controls (n=129 each) at a single centre in Pakistan. Patients and their siblings completed HQROL surveys (PedsQL 4.0 Generic Core, PedsQL Cognitive Functioning). Patients only completed PedsQL 3.0 Cardiac module. Generalised linear models identified predictors. RESULTS: The sample mean age was 8.84±3.87 years and 70% were below the poverty line for an LMIC. The majority (68%) had their first surgery after 1 year of age and were interviewed at a mean 4.08±1.91 years postoperatively.Patients with CHD had lower HRQOL in all domains compared with their age-matched siblings, with the biggest differences for total HRQOL (effect size, d=-1.35). Patients with complex CHD had lower HRQOL compared with simple to moderate CHDs in cardiac-related HRQOL. The lowest scores were for treatment problems (effect size, d=-0.91). HRQOL was worse for patients who were on cardiac medications, had complex CHD, longer cardiopulmonary bypass time, re-operations and were female. CONCLUSIONS: HRQOL issues persist in postoperative patients with CHD in LMIC, Pakistan. Solutions are needed to address poor HRQOL and lifelong concerns of patients and their parents.


Assuntos
Cardiopatias Congênitas/cirurgia , Qualidade de Vida , Adolescente , Procedimentos Cirúrgicos Cardíacos/métodos , Procedimentos Cirúrgicos Cardíacos/reabilitação , Estudos de Casos e Controles , Criança , Pré-Escolar , Estudos Transversais , Países em Desenvolvimento , Feminino , Cardiopatias Congênitas/reabilitação , Humanos , Masculino , Paquistão , Período Pós-Operatório , Psicometria , Irmãos , Fatores Socioeconômicos
16.
BMJ Open ; 7(10): e018046, 2017 Oct 30.
Artigo em Inglês | MEDLINE | ID: mdl-29084799

RESUMO

INTRODUCTION: Reduced health-related quality of life (HRQOL) has been reported in postoperative patients with congenital heart disease (CHD). However, there is a paucity of data from low-income and middle-income countries (LMIC). Differences in sociodemographics and sociocultural contexts may influence HRQOL. This protocol paper describes a study exploring HRQOL in surgical patients with CHD from a tertiary hospital in Pakistan. The study findings will assist development of strategies to improve HRQOL in a resource-constrained context. METHODS AND ANALYSIS: This prospective, concurrent triangulation, mixed-methods study aims to compare HRQOL of postsurgery patients with CHD with age-matched healthy siblings and to identify HRQOL predictors. A qualitative component aims to further understand HRQOL data by exploring the experiences related to CHD surgery for patients and parents. Participants include patients with CHD (a minimum of n~95) with at least 1-year postsurgery follow-up and no chromosomal abnormality, their parents and age-matched, healthy siblings. PedsQL 4.0 Generic Core Scales, PedsQL Cognitive Functioning Scale and PedsQL 3.0 Cardiac Module will measure HRQOL. Clinical/surgical data will be retrieved from patients' medical files. Student's t-test will be used to compare the difference in the means of HRQOL between CHD and siblings. Multiple regression will identify HRQOL predictors. A subsample of enrolled patients (n~20) and parents (n~20) from the quantitative arm will be engaged in semistructured qualitative interviews, which will be analysed using directed content analysis. Anticipated challenges include patient recruitment due to irregular follow-up compliance. Translation of data collection tools to the Urdu language and back-translation of interviews increases the study complexity. ETHICS AND DISSEMINATION: Ethics approval has been obtained from The Aga Khan University, Pakistan (3737-Ped-ERC-15). Study findings will be published in peer-reviewed journals and presented at national and international conferences.


Assuntos
Países em Desenvolvimento , Cardiopatias Congênitas/cirurgia , Complicações Pós-Operatórias , Qualidade de Vida , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Idioma , Masculino , Metiltransferases , Paquistão , Pais , Estudos Prospectivos , Projetos de Pesquisa , Proteínas de Saccharomyces cerevisiae , Irmãos , Fatores Socioeconômicos , Adulto Jovem
17.
Int J Nurs Stud ; 50(6): 717-26, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22704527

RESUMO

BACKGROUND: Involvement of family in bedside rounds is one strategy to implement family-centered care to help families get clear information about their child, and be actively involved in decision-making about care. However in developing countries such as Pakistan, daily bedside rounds include the physician, residents, medical students and a nurse/technician. Parents are not currently a part of these rounds. OBJECTIVE: To assess whether family-centered rounds improve parents' and health care professionals' satisfaction, decrease patient length of stay, and improve time utilization when compared to traditional practice rounds in a population with a low literacy rate, socioeconomic status, and different cultural values and beliefs. DESIGN: A non-randomized before-after study design. SETTING: A private hospital in Karachi, Pakistan. PARTICIPANTS: A convenience sample of 82 parents, whose children were hospitalized for a minimum of 48h, and 25 health care professionals able to attend two consecutive rounds. METHODS: During the before phase, traditional bedside rounds were practiced; and during after phase, family-centered rounds were practiced. Parents and health care professionals completed a questionnaire on the second day of rounds. An observational form facilitated data collection on length of stay and time utilization during. RESULTS: Parents' ratings during the family-centered rounds were significantly higher for some parental satisfaction items: evidence of team work (p=0.007), use of simple language during the rounds (p=0.002), feeling of inclusion in discussion at rounds (p=0.03), decision making (p=0.01), and preference for family-centered rounds (p=<0.001). No significant differences were found in health care professionals' satisfaction between rounds. Patient length of stay was significantly reduced in the family-centered rounds group, while no significant difference was found in the duration of rounds. Family-centered rounds served as an opportunity for parents to correct/add to patient history or documentation. CONCLUSION: Parents were satisfied with both forms of rounds; however, they appeared to have a greater preference for family-centered rounds than health care professionals. Family-centered rounds were a resource for Pakistani parents, enabling direct communication with the medical team without impacting on the time required to complete rounds. Family-centered rounds may improve quality of care such as decreasing length of stay or preventing critical incidents.


Assuntos
Hospitais Privados/organização & administração , Unidades de Terapia Intensiva Pediátrica , Pais/psicologia , Relações Profissional-Família , Criança , Feminino , Humanos , Satisfação no Emprego , Masculino , Paquistão , Equipe de Assistência ao Paciente , Satisfação do Paciente
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