Principal Investigators: Dr. Brian Cameron and Dr. Dan Poenaru
Current Enrollment Number: 176 study participants
Study Coordinator: Julia Pemberton, PhD (c)
Research Assistant: Claudia Frankfurter, BHSc (c)
Funded By: Surgical Associates Research Grant, McMaster Department of Surgery
This project is focused on describing the scope of pediatric surgical practice and understanding the global burden of disease in children in Kenya and Canada, two widely divergent settings, by determining Disability Weights for pediatric congenital surgical conditions. Disability Weights (DWs) are a necessary measurement needed to calculate the Disability Adjusted Life Years (DALY) associated with living in a specific disease state. The persons interviewed for this study include physicians, nurses, allied health professionals, and others caring for patients with pediatric diseases.
The DAPS study was conducted with parents and community members at Bethany Kids Hospital in Kijabe, Kenya and at McMaster Children's Hospital in Canada.
Results for the Disability Weight (DW) derivation:
In total, 154 participants, matched by profession, were recruited from Kijabe, Kenya (n=78) and Hamilton, ON, Canada (n=76). Overall DWs for 15 health states ranged from 0·15 to 0·98 (SD 0·0—0·17), with little difference between countries. However, DWs generated in Kenya for severe hypospadias and undescended testes were higher (0·52, SD 0·20) than Canadian-derived DWs (0·27, SD 0·15; both p<0·0001), while cleft lip and palate (0·25, SD 0·51) were lower in Kenyan participants than Canadian participants (0·18, SD 0·41; both p<0·0001).
Overall, we established novel DWs for paediatric congenital anomalies using a low-cost multi-method approach. DWs do not appear to differ significantly across cultural contexts and can be used to calculate burden of global paediatric surgical disease.
Results for the Disability Adjusted Life Years (DALYs) calculation:
Out of the 14 congenital conditions studied, severe abdominal wall defects and intestinal atresia led to the highest mean averted Burden of Disease (BoD) per patient (38.5 and 36.3 DALYs respectively), while hydrocephalus and spina bifida accounted for the greatest total BoD averted surgically (60.4% and 18.4% respectively). The total BoD averted through the 963 surgical procedures performed in 2012 on the congenital conditions studied was 21,455 DALYs. Of the total DALYs, 7.9% fell within the traditional field of pediatric plastic surgery, 13.6% pediatric urology, 22.3% pediatric neurosurgery and 32.4% pediatric general surgery.
Results from the Community Stigma
Sub-study in Kenya:
Elements of Kenyan children’s disability experience identified were stigmatizing perceptions impairing community integration, low self-esteem, lack of independent mobilization, and limited schooling and employment opportunities attributed to discriminatory practices. Caregivers reported abandonment by community and family, condemnatory attitudes faulting them for CAs, and barring from social services as barriers affecting their quality of life. Quantitative results indicated that neurological conditions were associated with the highest stigma (M=4.3, SD=1.1), while gastrointestinal defects affected socialization and ability to go to school to the greatest extent (M=4.4, SD=1.0 and M=4.1, SD=1.3 respectively). Final mixed method analysis revealed that stigmatizing attitudes were attributed to community beliefs perceiving CAs as supernatural curses, and translated into psychological distress in children and their caregivers.
2014 Consortium of Universities
for Global Health
MPSRC Intern Claudia Frankfurter gave a poster presentation on the disability associated with congenital anomalies, part of the DAPS study, at this year's 5th Annual Consortium of Universities for Global Health (CUGH) in Washington, DC.
AAP National Conference and Exhibition
On October 27th, 2013, Dr. Poenaru delivered a podium presentation entitled: "Measuring the Disability Averted through Surgery for 14 Pediatric Congenital Conditions in a Kenyan Hospital" at the American Academy of Pediatrics National Conference & Exhibition in Orlando, Florida. This conference unites researchers, clinicians, students, and health organizations in pediatrics to engage in and discuss novel research and its application to the medical and surgical care for children.
On June 18th, 2013, Dr. Dan Poenaru presented a poster at the Global Health Metrics and Evaluation (GHME) Conference in Seattle, Washington entitled "Establishing Disability Weights for Congenital Pediatric Surgical Disease: A cross-sectional, multi-modal study". The GHME Conference was hosted by The Institute for Health Metrics and Evaluation, The Lancet, Harvard School of Public Health, the London School of Hygiene & Tropical Medicine, and the University of Melbourne School of Population and Global Health. This conference brings together researchers, academic leaders, policy makers, and international health organizations working with global health measurement and evaluation to discuss and debate innovative tools within the field and their application to the advancement of population health measurement. The abstract for this presentation was published in The Lancet.
Bethune Round Table 2013
In May 2013 Julia Pemberton gave a presentation on DAPS at the 2013 Bethune Round Table (BRT) entitled "Quantifying the Burden of Pediatric Surgical Disease due to Delayed Access to Care. The BRT is held annually in Canada and focuses on improving surgical care globally, specifically in low- and middle-income countries.
Brock-McMaster Global Health Forum
MPSRC Intern Claudia Frankfurter presented a poster on the DAPS project entitled 'Quantification of Global Burden of Pediatric Surgical Disease Using Disability Weights through International Partnership” at the second Brock-McMaster Undergraduate Global Health Forum hosted by the Canadian Coalition for Global Health Research (CCGHR) on January 26th, 2013. The poster, as well as an article on the forum from the ISD website can be viewed from the links below.
[ISD: DAPS & the Brock-McMaster Global Health Forum]