Building a clinical service for children with CKD in a developing country

Transcription

1 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

2 Jamaica

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4 Prosperity Poverty

5 Population End of year population million 9% (246,093) < age 12 16% (426,626) < age Cumulative annual incidence of CKD *7.54 / million children < age 12 years

6 Jamaica- Administrative Regions Parishes with paediatricians

7 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

8 CHRONOLOGY OF EVENTS

9 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

10 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

11 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

12 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

13 Jamaica s second Paediatric Nephrologist Trained in Britain Second paediatric nephrology centre in Jamaica at Bustamante Children s Hospital CKD statistics

14 Promoting interest in Paediatric Nephrology at the Paediatric Resident Level - rotations Procuring Paediatric Nephrology Fellowship at the Hospital for Sick Children Toronto 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

15 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 children

16 REVIEWING OUR RESULTS

17 Cumulative annual incidence per million children aged under 12 years based on mid point year of study Incidence PMARP

18 Renal disease in Jamaica 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)

19 Relative changes in glomerular vs. urological disease % c a s e s

20 Outcome TOTAL Local dialysis 9% 28% 41% Death 65% 44% 37% (10) ESRD mortality 65% 28% (2) 7% (2) Transplanted 0 1 (age 9) 0

21 A TIME FOR REFLECTION AND FORWARD VISION

22 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

23 PROBLEM IDENTIFICATION

24 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

25 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!

26 JULY 2012

27 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

28 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

29 OUTREACH PAEDIATRIC RENAL CLINICS

30 INTERVENTIONS

31 EDUCATION

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33 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

34 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

35 OUTREACH

36 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

37 RESULTS

38 OUTREACH PAEDIATRIC RENAL CLINICS Rural Jamaica Funding Paediatric Nephrologist transportation Clinics are free Paediatric Nephrologist service is voluntary No Government support Massive Paediatrician support

39 RURAL PAEDIATRIC RENAL CLINICS KINGSTON Paediatric Nephrologist present Satellite stations reporting to Paediatric Nephrologist

40 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

41 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

42 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

43 RESULTS JKKF provides UHWI with virtually all the dialysis supplies required for the children < age 12 JKKF family support group:

44 TRAINING OF PAEDIATRIC NEPHROLOGISTS for Jamaica Collaboration: Montreal Children s Hospital 2014, 2016 Hospital for Sick Children -? IPNA and ISN Fellowship Montreal Children s Hospital Foundation assistance Tuition fee waiver JKKF Paediatric Nephrology Scholarship fund

45 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

46 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

47 PUBLIC EDUCATION World kidney day

48 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?

49 FUNDRAISING T shirts, gratitude cards across the island Functions Constant appeals for private sector support Publicity

50 TIME LINE TO PROGRESS

51 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 BCH BCH Sister Centre Local Paed Nephrology Training? UHWI / BCH TRANSPLANTATION 2018 Western Jamaica 2020 Central Jamaica