Building a clinical service for children with CKD in a developing country ALANEPE X LATIN AMERICA CONGRESS OF PEDIATRIC NEPHROLOGY Dr. Maolynne Miller JAMAICA WEST INDIES Paediatrician Paediatric Nephrologist University Hospital of the West Indies Founder and Chairman Jamaica Kidney Kids Foundation Cartagena de Indias October 11 th 2014
Jamaica
Prosperity Poverty
Population End of year population 2013 2.7 million 9% (246,093) < age 12 16% (426,626) < age 18 2007-2012 Cumulative annual incidence of CKD *7.54 / million children < age 12 years
Jamaica- Administrative Regions Parishes with paediatricians
History of Paediatric Nephrology in Jamaica 1970 s Paediatrician with interest 1978 Paediatric surgeon Intern and baby with CKD 1984 First paediatric nephrologist University Hospital of the West Indies (UHWI) 1999 Second Paediatric Nephrologist Bustamante Children s Hospital (BCH) 2012 Third Paediatric Nephrologist - UHWI
CHRONOLOGY OF EVENTS
STATUS IN DECEMBER 1984 Cohort of urological patients with CKD No children with ESRD from glomerular disease DEAD No CKD management Rickets No knowledge of normal values for paediatric renal function tests Children with acute problems managed by adult nephrologists Fluid overload in AKI treated with phlebotomy and rotating tourniquets
STATUS IN DECEMBER 1984 ALL presentations of glomerulonephritis (GN) presumed to be Post Strep GN despite atypical presentations Late presentation with obstructive uropathy UTI only investigated after recurrences No statistical data Few renal biopsies
INTERVENTIONS 1985 Education in Kingston and across the island Paediatric residents Medical students Paediatricians private and in hospitals General practitioners Clear criteria for referral Introduction of early screening of children with UTI Renal manual protocols for investigation and treatment Independent Record keeping Acute peritoneal dialysis
1984-2000 Jamaica s first Paediatric Nephrology Centre UHWI Concentration on PREVENTION and AKI management CHRONIC DIALYSIS Adult patients (>age 12yr) only Mid 1990 s Professor Everard Barton Chronic dialysis of big kids Availability limited
1984-2000 1999 Jamaica s second Paediatric Nephrologist Trained in Britain Second paediatric nephrology centre in Jamaica at Bustamante Children s Hospital CKD statistics
2000-2011 Promoting interest in Paediatric Nephrology at the Paediatric Resident Level - rotations Procuring Paediatric Nephrology Fellowship at the Hospital for Sick Children Toronto 2010 - Jamaican Paediatrician leaves for Paediatric Nephrology Fellowship Toronto Hospital for Sick Children 2007 First small child (3 years) starts chronic PD 2010 Second small child (age 3years) starts chronic PD Chronic PD 8 year old Central Jamaica Adult Nephrology UHWI outreach Close monitoring absent Paediatricians hands off management lack of knowledge
2012 LANDMARK YEAR First small child (12kg age / age 4 years) starts chronic Haemodialysis Return of Paediatric Nephrologist from Toronto Chronic Paediatric Dialysis for small children < age <10 years takes off Paediatric age at UHWI increased to 16 UHWI only centre for chronic dialysis children < age 12 years in Jamaica Children < age 16 years on chronic dialysis under Paediatric Nephrology at UHWI 2012 one child 2013 6 children
REVIEWING OUR RESULTS
Cumulative annual incidence per million children aged under 12 years based on mid point year of study 8 7 6 5 4 Incidence PMARP 3 2 1 0 1985-2000 2001-2006 2007-2012
Renal disease in Jamaica 1985-2000 Cumulative annual incidence of CKD in children aged <12 year 3.2 / million age related population (34 children) Glomerular disease most common Failure to recognize atypical presentations Post infectious 26.5% (Post Strep 11.8%) Urological 41% (late diagnosis) 50% children in ESRD at first presentation Mortality 65% Access to dialysis locally 0.8% (3/34)
Relative changes in glomerular vs. urological disease 1985-2012 60 % c a s e s 50 40 30 20 10 0 1985-2000 2001-2006 2007-2012
Outcome 1985-2000 2001-2006 2007-2012 TOTAL 34 18 27 Local dialysis 9% 28% 41% Death 65% 44% 37% (10) ESRD mortality 65% 28% (2) 7% (2) Transplanted 0 1 (age 9) 0
2012-2013 A TIME FOR REFLECTION AND FORWARD VISION
2012-2013 Issa Trust Foundation/ DaVita Bridge of Lifethrough 2010 IPNA conference contacts Offer for independent dialysis unit for children at UHWI Need for funding JAMAICA KIDNEY KIDS FOUNDATION FOUNDED Building project failed but.. MULTIPLE MORE SEVERE PROBLEMS!!! Goals of JAMAICA KIDNEY KIDS FOUNDATION expanded to cover a vision for long term development of paediatric nephrology services in Jamaica
PROBLEM IDENTIFICATION
PROBLEMS!! Centralization of Paediatric Nephrology services in Kingston University Hospital of the West Indies Bustamante Children s Hospital High clinic default rate transportation costs Inadequate quota of paediatric nephrologists Only one full time* None in rural areas Paediatric Nephrology Centres
2012-2013 PROBLEM IDENTIFICATION Dialysis kids with acute problems presenting to rural paediatricians / emergency rooms Paediatrician avoidance of CKD management based on lack of knowledge Nurses unfamiliar with paediatric dialysis nuances No paediatric nephrologists outside of Kingston No paediatric renal registry MAJOR FUNDING ISSUES AT UHWI! Patient poverty non payment of fees!
JULY 2012
2012 2013 Redirection of goals from buildings to service provision EDUCATION Physicians / Nurses paediatric renal disease, CKD recognition and management Paediatric residents identification of candidates for Paediatric Nephrology Fellowships in Canada JKKF Paediatric Nephrology Scholarship Fund International Collaboration IPNA / ISN Community public exhibitions - pamphlets
2012-2013 SUPPORT Hospitals caring for children with renal disease supplies / training Families of CKD children JKKF Family Support Group education, counseling, job training opportunities Volunteers to teach in-patients FINANCIAL FUNDRAISING Private sector International support PETITIONING GOVERNMENT to financially support Paediatric dialysis
2012-2013 OUTREACH PAEDIATRIC RENAL CLINICS
INTERVENTIONS
EDUCATION
WORKSHOP Paediatricians One paediatric resident From each rural Government Hospital island wide Intense 2 day training program in CKD 6 paediatric nephrologists Interactive problem solving at end of conference Topics included: Anaemia Bone disease Fluid balance Recognition of CKD Outpatient management of CKD Dialysis basics Management of problems in children with CKD and on dialysis
WORKSHOP GOALS Educate paediatricians islandwide in recognition and management of CKD Increased awareness of conditions which may result in CKD Template for local monitoring of the children Central reporting to Paediatric Nephrologist Fewer visits to Kingston Better compliance Training Paediatric resident in rural hospital in monitoring child on PD
OUTREACH
OUTREACH GOALS Increase awareness of paediatric renal disease Educate on CKD recognition and management TARGETS: Paediatricians Paediatric residents ER doctors Medical students Paediatric surgeons Paediatric nurses
RESULTS
2012-2013 OUTREACH PAEDIATRIC RENAL CLINICS Rural Jamaica Funding Paediatric Nephrologist transportation Clinics are free Paediatric Nephrologist service is voluntary No Government support Massive Paediatrician support
RURAL PAEDIATRIC RENAL CLINICS KINGSTON Paediatric Nephrologist present Satellite stations reporting to Paediatric Nephrologist
RESULTS Central Jamaica - Mandeville Resident / Consultants monitoring CKD patients Increased detection of renal disease Resident monitoring patient on PD Paediatric Renal Outpatient Clinic started for local and mid island referrals Paediatric nephrologist attends Teaching haemodialysis staff and Adult nephrologists about Paediatric Haemo in preparation for patient transfer in October 2014
RESULTS North Western Jamaica Montego Bay Consultants monitoring CKD patients Increased detection of renal disease Paediatric Renal Outpatient Clinic started Paediatric Nephrologist attends UHWI Teaching paediatric residents to monitor children on dialysis
RESULTS Generally Better outpatient follow up Some centres more motivated than others Recording: Central computer recording of patients seen in outreach and at UHWI on template August 2013 Diagnosis Follow-up visits Draft template made for internet based paediatric renal registry Funding and manpower needed
RESULTS JKKF provides UHWI with virtually all the dialysis supplies required for the children < age 12 JKKF family support group:
TRAINING OF PAEDIATRIC NEPHROLOGISTS for Jamaica Collaboration: Montreal Children s Hospital 2014, 2016 Hospital for Sick Children -? 2016 2014 IPNA and ISN Fellowship Montreal Children s Hospital Foundation assistance Tuition fee waiver JKKF Paediatric Nephrology Scholarship fund
2014 RENAL FELLOW For all our Fellows sent for training now: Interventional nephrology skills essential Transplantation and dialysis expertise Preparation for working with limited resources
TRAINING OF PAEDIATRIC NEPHROLOGISTS for Jamaica Training is expensive $144,000 Canadian Jamaican $ is 112: 1 Canadian JKKF scholarship fund contribution of $30,000 Canadian = more than $3 million JAD Only by fundraising
PUBLIC EDUCATION World kidney day
PUBLIC EDUCATION Television appearances Newspaper interviews Educational Brochures Common problems of the kidneys and urine in children Wetting (incontinence) Urine infections Nephritis Nephrotic syndrome Bedwetting What are the Red flags?
FUNDRAISING T shirts, gratitude cards across the island Functions Constant appeals for private sector support Publicity
TIME LINE TO PROGRESS
1970 s 1984 THE DARK AGES 1984 UHWI PREVENTION TIME LINE TO PROGRESS JA Paediatric Renal Registry JAMAICA KIDNEY KIDS FOUNDATION 2012 UHWI DIALYSIS 1999 BCH 2018 2018 BCH BCH Sister Centre Local Paed Nephrology Training?2020 2016 UHWI / BCH TRANSPLANTATION 2018 Western Jamaica 2020 Central Jamaica