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Health-related quality of life in congenital heart disease surgery patients in Pakistan: protocol for a mixed-methods study.

ABSTRACT: 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.

SUBMITTER: Ladak LA

PROVIDER: S-EPMC5665301 | biostudies-literature | 2017 Oct

REPOSITORIES: biostudies-literature

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Health-related quality of life in congenital heart disease surgery patients in Pakistan: protocol for a mixed-methods study.

Ladak Laila Akbar LA Hasan Babar Sultan BS Gullick Janice J Awais Khadija K Abdullah Ahmed A Gallagher Robyn R

BMJ open 20171030 10

<h4>Introduction</h4>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 ...[more]

PMID: 29084799

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Project description:BackgroundWe describe the statistical methods and results related to development of the first congenital heart surgery composite quality measure.MethodsThe composite measure was developed using The Society of Thoracic Surgeons Congenital Heart Surgery Database (2012 to 2015), Bayesian hierarchical modeling, and the current Society of Thoracic Surgeons risk model for case-mix adjustment. It consists of a mortality domain (operative mortality) and morbidity domain (major complications and postoperative length of stay). We evaluated several potential weighting schemes and properties of the final composite measure, including reliability (signal-to-noise ratio) and hospital classification in various performance categories.ResultsOverall, 100 hospitals (78,425 operations) were included. Each adjusted metric included in the composite varied across hospitals: operative mortality (median, 3.1%; 10th to 90th percentile, 2.1% to 4.4%) major complications (median 11.7%, 10th to 90th percentile, 6.4% to 17.4%), and length of stay (median, 7.0 days; 10th to 90th percentile, 5.9 to 8.2 days). In the final composite weighting scheme selected, mortality had the greatest influence, followed by major complications and length of stay (correlation with overall composite score of 0.87, 0.69, and 0.47, respectively). Reliability of the composite measure was 0.73 compared with 0.59 for mortality alone. The distribution of hospitals across composite measure performance categories (defined by whether the 95% credible interval overlapped The Society of Thoracic Surgeons average) was 75% (same as expected), 9% (worse than expected), and 16% (better than expected).ConclusionsThis congenital heart surgery composite measure incorporates aspects of both morbidity and mortality, has clinical face validity, and greater ability to discriminate hospital performance compared with mortality alone. Ongoing efforts will support the use of the composite measure in benchmarking and quality improvement activities.

Project description:BACKGROUND:Gastroenteropancreatic neuroendocrine tumors (GEP NETs) are a heterogeneous group of tumors with distinct effects on the body due to their potential to secrete hormones and peptides. The incidence and prevalence of GEP NETs in Australia are rising. During 2000-2006, the annual incidence was approximately 3.3 per 100,000 population. To date, there has been development of clinical practice and consensus guidelines for NETs covering best practice for diagnosis, treatment, and medical management; however, the supportive care needs and optimal nutritional management of patients affected by NETs remains underresearched, and evidence to guide clinical practice is lacking. While there is emerging research describing the extent of morbidity in different types of GEP NET patients, little is known about the experience of people affected by these tumors and how nutritional status is impacted by either diagnosis or treatment. OBJECTIVE:The objective of this study was to explore nutrition-related complications and quality of life of patients diagnosed with a GEP NET and to generate evidence to inform future research and development of nutrition screening and management practices. METHODS:Patients diagnosed with a GEP NET at two metropolitan recruitment sites will be invited to participate in a 6-month, mixed-methods longitudinal study. Participants recruited to the study will receive usual care and participate in data collection for the study at 4 time points (at recruitment and 2, 4, and 6 months postrecruitment). Study data will include nutritional status, body weight, fat-free mass, and patient-reported outcome measures (dietitian contact, disease-related symptom presence and severity, dietary habits, health-related quality of life, psychological morbidity, and financial impact). At recruitment and 6 months postrecruitment, complete nutrient testing, including relevant plasma vitamin levels, will also be undertaken. A purposive sample of participants will be invited to take part in semistructured interviews to explore the experience of living with a GEP NET and associated nutrition complications. RESULTS:Ethics approval has been obtained, and study recruitment and data collection are underway. CONCLUSIONS:This study will provide the first in-depth, comprehensive description of nutritional issues in patients with GEP NETs. Results will advance the knowledge of nutritional issues faced by patients with GEP NETs and help inform the development of screening tools and clinical practice guidelines. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):DERR1-10.2196/11228.

Project description:BackgroundCongenital heart disease (CHD) is the most common congenital anomaly at birth, affecting approximately 1% of live births. In recent decades great medical and surgical advances have significantly increased life expectancy, shifting healthcare professionals' and researchers' interests in patients' Quality of Life (QoL). The main aims of our study were to evaluate generic and condition-specific QoL in a group of Italian children and adolescents with CHD and their parents and examine the level of agreement and directional disagreement between child/adolescent and parents reports on generic and condition-specific QoL.MethodsA cross-sectional study was designed with CHD children and adolescents and their parents referred to the Cardiology Department of "Bambino Gesù" Children's Hospital. The PedsQL scale was used, including generic (PedsQL 4.0) and cardiac-specific modules (PedsQL 3.0) were administered to patients and caregivers. A Kruskal-Wallis test was used to compare generic and cardiac module scores between patients with different ages, CHD diagnoses, and between patients who underwent surgery interventions and/or are currently taking cardiac medications.Results498 families were enrolled in this study. On average, patients reported a good level of generic and condition-specific QoL, as well as their mothers and fathers. Children aged between 5-7 years old reported lower generic and cardiac-specific total QoL levels than children aged 8-12 years and adolescents (13-18 years). With regard to the agreement, patient-parent agreement on condition-specific QoL ranged from 25 to 75% while on generic QoL, it ranged from 19 to 76%. The highest percentage of disagreement between parents and children was found in patients aged 5-7 years old, both for condition-specific and generic QoL rates.ConclusionsOur study contributed to the growing body of knowledge on QoL in CHD, emphasizing the need for these families to receive support from multidisciplinary standardized care, including psychological consultations and support.

Project description:BACKGROUND:Overweight and obesity are public concerns with risk of adverse health outcomes. Health-related quality of life (HRQoL) is lower in adolescents than children in general. An increase in body mass index (BMI) is associated with a decrease in HRQoL. The purpose of this study was to measure and explore the HRQoL among adolescents with overweight or obesity who had participated in an intervention study, Young & Active, with the aim of increasing physical activity (PA), reducing BMI and promoting HRQoL. METHODS:Mixed methods, with a convergent design, were used to investigate how different methodological approaches could expand our understanding of the adolescents' HRQoL. Quantitative post-intervention data on HRQoL were collected among the 84 intervention participants, aged 13-14 years, using the KIDSCREEN 52 questionnaire. The data were compared with a Norwegian reference population of 244 individuals, and analysed using a non-parametric Mann-Whitney test. Qualitative semi-structured interviews were conducted with 21 adolescents from the intervention. A directed approach to content analysis was adopted, using the ten sub-scales from KIDSCREEN 52. RESULTS:HRQoL in the intervention sample was significantly reduced on the sub-scale of physical well-being compared to the reference population. The reference population scored significantly lower than the intervention sample on the sub-scale of parent relation and home life. No significant differences were found on the other sub-scales. The qualitative data supported the quantitative findings on the sub-scale of physical well-being, but showed that perceptions of fitness, energy level or health could vary. Regarding parent relations, the interviewees extended this to include relationships to other family members as equally important. Most of the interviewees expressed a negative view of their bodies, but not their clothing or accessories. This may explain why no statistically significant differences were found on these aspects in the results from the KIDSCREEN questionnaire. CONCLUSION:The use of the KIDSCREEN 52 instrument gave important indications about the adolescents' HRQoL and need for additional follow up. The qualitative data provided an in-depth understanding that nuanced the findings and widened our knowledge of the adolescents HRQoL. Combining methods enabled a comprehensive approach to research on HRQoL.

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Health-related quality of life in congenital heart disease surgery patients in Pakistan: protocol for a mixed-methods study.

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Health-related quality of life in congenital heart disease surgery patients in Pakistan: protocol for a mixed-methods study.

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