Surveillance for NCDs in the USAPI- Technical Working Group Summary of Recommended Core Indicators

Transcription

1 Surveillance for NCDs in the USAPI- Technical Working Group Summary of Recommended Core Indicators Every 1-2 Years -Is the NCD response being implemented? -Is it succeeding? Youth Risk Factors 30 day Tobacco use prevalence 30 day Alcohol use prevalence Overweight + Obesity prevalence (YRBS, GSYS, or local school survey grades 9-12) Core Policies Uptake (per NCD Response M&E Plan) Every 3-5 Years - More detailed feedback to adjust routine strategy and confirm success Adult Risk Factors 30 day Tobacco use prevalence 7 day problem alcohol use prevalence Overweight + Obesity prevalence HTN, DM, Hyperlipidemia prevalence (25-64 yo-ncd Steps, or face-to-face BRFSS with physical measurements Mortality All-cause mortality 15-59yo Life Expectancy at 40 yo Cause specific mortality yo -- Cancer -- CVD --COPD --Diabetes (Vital Stats) As Needed -Supplemental and special studies to test & refine strategies Cancer Registry Food Access Surveys Environment Surveys Economic Impact Studies Regulation Compliance Surveys Health System Capacity Surveys Hospital & Outpatient Encounter Data Health Service Quality and Coverage Criteria for declaring an end to the NCD Epidemic: All three core youth risk factors showing a decline sustained for at least 3 years in all USAPI

2 REPORT OF THE NCD SURVEILLANCE TECHNICAL WORKING GROUP HONOLULU, MAY 24-25, 2012 Technical Working Group Members: Rally Jim, Edlen Anzures, Mindy Sugiyama, Ed Diaz, Angela Techur-Pedro, Doreen Mandari, Omengkar Wally, Venancio Imanil, Ben Jesse, Julia M. Alfred, John Hedson, Va a Tafaeono, Joyce Songsong, Evel (Felix) Pelep, A Mark Durand (affiliations in Annex A) Introduction: The NCD Surveillance Technical Working Group (TWG) was formed in response to the PIHOA NCD Emergency Declaration of April, 2010 which calls for a vigorous policy response guided by clear, accurate and referenced data on NCDs and their impact, effectively integrated with other regional, national and local NCD policies and plans, and providing benchmarks for ending the Regional State of Health Emergency. 1 Further specific guidance was provided in the Regional NCD Response Road Map developed by PIHOA members, partners and affiliate groups during the 51 st PIHOA Meeting held in Hawaii in November, The Road Map endorsed a focus of the response upon four major NCD disease categories (cardiovascular disease, cancer, diabetes and chronic lung disease) and their four major risk factors (tobacco use, unhealthy alcohol use, unhealthy diets and physical inactivity). It also called for directing particular attention to youth. The mission of the TWG has been to make recommendations to PIHOA members, affiliates and partners for the creation of a functional NCD surveillance system with a minimum of delay which is sufficient for guiding NCD response at the regional and jurisdiction levels. TWG Objectives: Development of recommendations for the elements of a minimum data set to be used to paint a clear regional picture of the course of the epidemic over time; Identification of appropriate institutional mechanism(s) for providing support for jurisdictional NCD surveillance, and for assembling a regional picture of the progress of the epidemic; Development of recommendations for integrating a regional surveillance mechanism into existing NCD related strategic plans, and for using this mechanism to promote a more coherent approach to surveillance in NCD-related response plans that are yet to be developed. 1 PIHOA Board Resolution # Declaring a Regional State of Health Emergency due to the Epidemic of Noncommunicable Diseases in the US Affiliated Pacific Islands, Palau, April, (Available at ) 2 The NCD Response Road Map, USAPI Health Leadership Council, November, (Available at )

3 Development of recommendations for criteria to be used for declaring an end to the NCD state of emergency. Methods: Technical working group (TWG) members were nominated by PIHOA Board members, by NCD-related regional PIHOA-affiliated professional associations, and from the Health Information Systems SWAT Team (a PIHOA-Sponsored team of within-region HIS consultants). Background materials were collected upon recommendations by technical working group members and partners from the Western Pacific Regional Office of the World Health Organization, Centers for Disease Control and Prevention, Secretariat for the Pacific Community, and Pacific Public Health Information Network. These materials and data sources were reviewed in advance by the TWG and discussed by conference call (Annex B). One-on-one conference calls were also conducted by one of the TWG members (AMD) with surveillance officers from CDC, WHO, and the Secretariat of the Pacific Community. Recommendations were developed during a two day TWG workshop held at the University of Hawaii, John A Burns School of Medicine on May 24-25, with further input from officials from CDC, SPC, and WHO. (meeting agenda, Annex C) The March, 2012 Second WHO Discussion Paper for a Global Monitoring Framework was used as a model. 3 Particular attention was given to identification of capacity gaps, opportunities to build upon existing systems, affordability, and practical application in the context of the USAPI. The TWG recommendations are intended to lead to a surveillance system that is capable of providing answers to basic questions that need to be addressed in managing an epidemic: 1. Is the epidemic getting better or worse? Are control measures being implemented as planned, and are they working? This level of information calls for real time feedback-- i.e. using leading indicators that can show rapid response to successful interventions. The pyramid concept -- i.e. giving a clear picture of the general situation, by bundling more than one factor together where possible was applied in the TWG deliberations for indicators at this level. 2. What specific changes in distribution of diseases and risk factors are occurring that suggest the need to adjust control strategies? This level of information calls for more detailed studies that can be performed at longer intervals. 3. What insights from more in-depth investigations can suggest new strategies or are needed for detailed response plans of individual public health and clinical programs? This level of feedback calls for even more detailed studies, either performed regularly (e.g. cancer registry data collection) or as needed. TWG recommendations are being submitted for review, revision and endorsement by the Secretaries, Ministers and Directors of Health, and to the Leadership Council of affiliated professional organizations 3 A Comprehensive Global Monitoring Framework Including Indicators and a Set of Voluntary Global Targets for the Prevention and Control of Noncommunicable Diseases. Second WHO Discussion Paper. March, 2012.

4 in the USAPI. Once endorsed, the final recommendations will be used to build a more robust surveillance system needed to mount an effective response to the NCD epidemic. Key Findings: Existing NCD risk factor and disease prevalence data are sufficient to indicate that the Pacific islands are among the most severely affected areas in the world. However, current NCD surveillance activities are not adequate for guiding a response to an evolving epidemic because they generally: - are conducted at irregular intervals, - are uncoordinated with one another, - lack consensus regarding core indicator definitions and age ranges, suffer from reporting delays brought on by inadequate processing and analysis capacity, - are reported in a technical format that does not favor easy understanding of results. At times it seems that the Pacific is drowning in a sea of NCD data that is too voluminous and disorganized to allow for easy application. As one of the most severely affected areas in the world, and the only region to have declared a state of health emergency for NCDs, it is especially important to establish a system that provides frequent, regular surveillance ( real time ) feedback to guide interventions, using leading indicators. Risk factors prevalence in youth are leading indicators - being relatively quickly responsive to changes in policy, compared with other NCD indicators such as adult risk factors, morbidity and mortality. School surveys are attractive mechanism for risk factor surveillance. Since most youth are enrolled in middle and high school in the USAPI, well conducted school surveys offer an easy and inexpensive way to perform population-based surveys for this age group (though youth risk factor surveys are not included among the core surveillance measures in the WHO Discussion Paper). For simple, frequent, real time surveillance, obesity is a reasonable bundled proxy for overnutrition plus physical inactivity. For strategy development, more detailed, less frequent nutritional and physical activity data are needed. Elementary school is better than high school age (before the instability of BMI as an indicator during puberty) for determination of youth obesity prevalence, while high school is better than elementary school age for determination of alcohol and tobacco use prevalence (though attendance rates may be a bit lower by high school). For simplicity of administration it is desirable to accept trade-offs and pick one age group for real time youth risk prevalence monitoring. NCD Steps is an attractive tool for conducting adult risk factor surveillance and has been deployed in most, but not all of the USAPI. It is in use widely throughout the world, is well validated, and contains both self-reported and physical measures of risk. However, the tool is complex, expensive to conduct, and there is not yet a system in place to analyze the results promptly. WHO has invested considerable resources in deploying NCD Steps in the region but

5 appears to be far away from its stated aim of enabling countries to conduct NCD Steps or Mini Steps surveys every five years. BRFSS is another complex adult risk-factor surveillance tool that has been deployed in most, but not all USAPI. It is designed to be administered by phone, which presents difficulties in jurisdictions with few phones per capita. TWG members reported the impression anecdotally that survey response accuracy may suffer from a cultural disposition not to share personal information by phone. This proposition may be tested by comparing self-reported behavioral risk factor prevalence between NCD Steps and BRFSS surveys is jurisdictions, like Palau, where both surveys are being administered within a year or two of one another. CDC is pilot testing face-to-face administration of BRFSS, with the addition of physical measurements, this year in Kosrae state. CDC may be willing to support face-to-face delivery elsewhere in the region as well. BRFSS has the advantage of a well-established system for processing and analyzing results, with a turnaround time of a few months between data collection and release of reports. It also has the advantage of a stable funding source through CDC, with the next funding cycle scheduled for BRFSS and NCD Steps surveys have nearly identical items for major risk factors, but cover different age ranges (18 yo and up for BRFSS; yo for NCD Steps). To make results comparable over time and across jurisdictions doing these surveys it is desirable to agree upon a standard age range for both surveys. Usual text and table-format NCD surveillance reports are not read widely. Long turn-around times between data collection and reports further decrease interest in results. Hospital and outpatient encounter databases systems are operating in most hospitals and some outpatient facilities in the USAPI, but will require a lot of improvement before they can be very useful for NCD morbidity surveillance. The Secretariat for the Pacific Community has been engaged in a program for strengthening vital statistics systems throughout the Pacific islands for several years, and has developed a wellthought out, Pacific-customized set of core indicators for monitoring NCD-related mortality over time. Cause of death determination by physicians and coders needs to be strengthened. There is not yet an institutionalized regional mechanism for building consensus and for strengthening and coordinating regional NCD surveillance activities (such as the Pacific Public Health Surveillance Network does for communicable disease surveillance). In keeping with the severity of the epidemic in the region, it is essential that a functional surveillance system be put in place without delay. We recognize that it may be desirable to reconsider surveillance indicators as the global NCD surveillance system takes shape.

6 Recommendations (Listed by TWG objective): 4 Objective 1: Develop recommendations for the elements of a minimum data set to be used to paint a clear regional picture of the course of the epidemic over time- 5 To PIHOA Board, USAPI Health Leadership Council 6, and affiliate professional organizations Formally endorse adoption of a common set of core, routine indicators, including youth and adult behavioral and metabolic risk factors, and mortality indicators, as indicated in Annex D, to be supplemented as needed with more in-depth, more narrowly focused surveys and studies School-based youth risk factor surveys, performed every 1-2 years are recommended for real time feedback, while adult risk factor surveys and assembly of mortality data every 3-5 years, is recommended for more detailed, regular surveillance. Special effort should be made for including outlying areas (such as outer islands) in school youth risk factor surveys and to capture cause of death information The TWG endorses the NCD mortality indicator selection and definitions developed by the Secretariat for the Pacific Community. Cause-specific ICD code groups used in these definitions are derived from the ICD-10 coding system. Data from jurisdictions still using ICD-9 (currently American Samoa, CNMI, Guam) will need to be manipulated to provide comparable causespecific mortality estimates. Technical assistance will be needed to do this. For community-based, adult risk factor prevalence determination, the TWG recommends using the year age range, no matter which survey tool is selected, to allow for comparison across jurisdictions (the core routine adult risk factor indicators listed in Annex D are otherwise identical between BRFSS and NCD Steps) Due to cultural factors, face-to-face collection of adult risk factor data are recommended over telephone interviews, unless field tests show that prevalence estimates are comparable in a jurisdiction. Age standardization should be performed for adult risk factor and mortality indicators. Most jurisdictions will need technical assistance to build the capacity to do this. The TWG recommends use of the WHO standard reference population. Clear baselines values need to be established for most of the core, routine indicators listed in Annex D. If available, data from 2010, or as close to 2010 as possible, should be used to establish baselines (use for mortality indicators requiring three years of composite 4 Except as noted, all recommendations are issued by consensus of the entire TWG 6 The council of PIHOA-affiliated Pacific-governed professional organizations, including the Pacific Basin Medical Association, Pacific Basin Dental Association, American-Pacific Nurse Leadership Council, Pacific Chronic Disease Coalition, Northern Pacific Environmental Health Association, Pacific Behavioral Health Collaborating Council, Pacific Resources for Education and Learning, Pacific Post-secondary Education Council, Secretariat of the Pacific Community, Pacific Partnership for Tobacco Free Islands, Pacific Islands Primary Care Association, and the Cancer Council of the Pacific Islands

7 data to avoid small-population random fluctuations). In general, indicator targets recommended by WHO, should be used where available 7. Objective 2: Identify appropriate institutional mechanism(s) for providing support for jurisdictional NCD surveillance, and for assembling a regional picture of the progress of the epidemic- Notes: a. There are two existing structures- the Pacific Public Health Surveillance Network, and the Regional Cancer Registry unit at University of Guam- that could be adapted, with to work with jurisdiction-based NCD surveillance units to build capacity and to ensure accurate collection of data for core NCD indicators. Both of these should be explored. b. There are also two existing structures at the jurisdiction level- the PPHSN affiliated EpiNet groups, and the Behavioral Health Collaborating Council affiliated State Epidemiology Outcome Workgroups (SEOWs) that could be adapted to the task of assuring that data for NCD indicators is collected properly, and that surveillance results are packaged and fed back to their communities. Again, both of these possible mechanisms should be explored. Recommendations: To the PIHOA Board Endorse, to WHO and SPC, an expanded role of the Pacific Public Health Surveillance Network (or to create a parallel structure), for building regional consensus and capacity for NCD surveillance, as it already does for communicable disease surveillance. This will require identification of resources for this expanded role. Engage the PIHOA Secretariat in identifying resources needed to support expanded roles cited above for the Behavioral Health Collaborating Council SEOWs and the Pacific Cancer Registry A region-wide NCD Emergency Response Monitoring and Evaluation unit should track the uptake of the essential policy package, once the elements of this have been identified and endorsed. This function may be best performed by the PIHOA secretariat. To the regional Comprehensive Cancer Control Program and Pacific Cancer Registry at University of Guam (then on to the PIHOA Board, Health Leadership Council, and affiliate professional organizations) Consider an expanded role for the regional cancer registry unit in Guam to include: - providing assistance to jurisdiction epidemiology working groups - assembling up-to-date, regional NCD epi profiles 7 e.g. as listed in: A Comprehensive Global Monitoring Framework Including Indicators and a Set of Voluntary Global Targets for the Prevention and Control of Noncommunicable Diseases. Second WHO Discussion Paper. March, (available at: )

8 To Behavioral Health Collaborating Council (then on to PIHOA Board, Health Leadership Council, and affiliate professional organizations) Consider an expanded role for the BHCC state epidemiology working groups (SEOWs) to include: - coordination of activities included in routine NCD surveillance, - involving communities in the preparation, dissemination and response to epi profiles To the Pacific Basin Medical Association The accuracy of core, regular surveillance indicators for mortality depends upon improved charting and cause of death determination by physicians. The adoption and promotion of competency standards for these functions by physicians is an important contribution to the regional NCD emergency response Objective 3: Develop recommendations for integrating a regional surveillance mechanism into existing NCD related strategic plans, and for using this mechanism to promote a more coherent approach to surveillance in NCD-related response plans that are yet to be developed. To the PIHOA Board and Health Leadership Council Encourage use of core, routine NCD surveillance indicators set forth in Annex D in objectives for agency strategic and annual plans Encourage development partners to align their NCD surveillance requirements and support with other partners in the region and with the core routine NCD surveillance indicators set forth in Annex D Encourage professional affiliate organizations, in their work with program funders, to incorporate the core routine NCD surveillance indicators set forth in Annex D, with more detailed routine and supplemental studies and indicators as needed into the data components of their program and strategic plans. For example, regional and jurisdiction cancer registries should develop needed cancer type-specific incidence and mortality indicators, but should prefer to use the same all-cancer mortality indicator set forth in Annex D. Encourage public health and clinical program managers within the USAPI to incorporate the core routine NCD surveillance indicators set forth in Annex D (with supplemental studies as needed) in the data components of their program and strategic plans. Objective 4: Development of recommendations for criteria to be used for declaring an end to the NCD state of emergency. To the PIHOA Board

9 Plan to declare an end to the Regional NCD State of Emergency when all three core, routine youth risk factors (tobacco use, alcohol use, and obesity) are showing a sustained (at least 3 years) decreased prevalence in all six USAPI jurisdictions 8 Other: To the PIHOA Board and NCD-related affiliate organizations and development partners Though not very useful for surveillance, the TWG emphasizes need for better development of NCD tracking registries, in particular to develop capacity to use software tracking programs for guiding public health outreach, for measuring compliance with clinical guidelines, and for prompting care providers to deliver needed interventions to patients with NCDs. 8 This is a majority recommendation of the TWG. There was a significant minority that favored a more stringent requirement of waiting until NCD mortality rates also demonstrated a substantial decrease.

10 Annex A: NCD Surveillance TWG Members Name Position Representing Phone address Evel (Felix) Pelep FSM National Cancer Regional Cancer Registrar Registry Ed Diaz CNMI Epidemiologist HIS SWAT Team Rally Jim Chief PH Pohnpei DHS HIS SWAT Team Mindy Sugiyama Palau MOH HIT Chief HIS Swat Team Angie Techur-Pedro PIHOA Secretariat HIS SWAT Team Va a Tafaeono Am Samoa Cancer NCD Leadership vtofaeono@gmail.com; Program Manager Council Representative Johnny Hedson Chief of Staff, Pohnpei CCPI jhedson@fsmhealth.fm; DHS Venancio Imanil, Guam Breast & Cerv Ca Program Coordinator CCPI venancio.imanil@dphss.guam.g ov; Omengkar Damien PCDC omengkarwally@gmail.com; Wally Doreen Mandari UH Epi Student UH Dept of PH dmandari@hawaii.edu; Ben Jesse FSM DHSA Planning Office FSM HSA Nominee bjesse@fsmhealth.fm; Julia M. Alfred Joyce Songsong A Mark Durand Director Single State Agency for Substance Abuse Grants, RMI CNMI NCD Administrator PIHOA HIS Initiative Coordinator PBHCC or 4357 or rmissasapt@gmail.com; CNMI CHCC jocelyn.songsong@dph.gov.mp Nominee HIS Swat Team durand@pihoa.org

11 Annex B: Background Materials A Comprehensive Global Monitoring Framework Including Indicators and a Set of Voluntary Global Targets for the Prevention and Control of Noncommunicable Diseases. Second WHO Discussion Paper. March, (available at: ) Childrens Food Environment State Indicator Report, CDC (available at:foodenvironmentreport@cdc.gov ) Hosey G, Ichiho H, Satterfield D, Dankwa-Mullan I, Kuartei S, Rhee K, et al. Chronic disease surveillance systems within the US associated Pacific Island jurisdictions. Prev Chronic Dis 2011;8(4):A86. (available at: ) World Health Organization NCD Country Profiles, (available at: ) WHO Global School-Based Student Health Survey (GSHS)- Background materials and survey instrument. (available at: ) CDC Youth Risk Behavior Survey- Background material and survey instrument. (available at: ) WHO NCD Stepwise Approach to NCD Control- Background material and survey instrument. (available at: ) CDC Behavioral Risk Factor Surveillance System- Background material and survey instrument. (available at: ) Indicators for Chronic Disease Surveillance. Recommendations and Reports. MMWR. Sept 10, (RR 11)1-6. Epp M, Palafox N, Buenconsejo-Lum L, Onaka A, Daye J, Durand M, Techur-Pedro A. Vital Statistics White Paper. Aug 18, (available at: ) AbouZahr C, Mikkelsen L, Rampatige R, Lopez A. Mortality Statistics: a Tool to Enhance Understanding and Improve Quality. Working Paper Series. #13. Univ or Queensland, Health Information Systems Knowledge Hub. Nov, (available at: )

12 Annex C: NCD Surveillance Technical Working Group Honolulu Meeting Agenda May 24-25, 2012 Thursday, May 24: Welcome and Introductions Overview of NCD Surveillance and Meeting Objectives Current regional NCD surveillance-related activities (presentations)- 8:30-9:00am- Lee Buenconsejo-Lum, CCPI- Cancer registries 9:00-9:30am- Machell Town, Gloria Colclough -CDC- BRFSS and YRBS 9:30-10am- Temo Waqanivalu, WPRO/WHO- (NCD Steps, GYSS, others) [no-show] 10-10:30- Rachel Novotny, Childhood Obesity Project 11:00am Karen Carter, SPC- Vital Statistics Capacity Building Project Lunch 1:00pm Julia Alfred, Pacific Behavioral Health Coordinating Council/Substance Abuse and Mental Health surveillance activities in the region 1:30pm-5:00pm- Core Indicators- risk factors a. Selection b. Capacity gaps c. Monitoring risk factor core indicators- filling the gaps Friday, May 25: Recap of day 1 Core Indicators- Morbidity and Mortality a. Selection b. Capacity gaps c. Monitoring morbidity & mortality indicators- filling the gaps Related issues: Monitoring institutional capacity, quality of care, policy uptake Lunch Preparation of recommendations for PIHOA Board and regional technical assistance agencies

13 Annex D: Recommended Core Routine NCD Surveillance Indicators Category Youth Risk Factors Indicator Frequency Age Group (stratified gender) Alcohol Tobacco Obesity (proxy for nutrition/physical activity) Prevalence of current use (at least one drink in past 30 days) Every 1-2 years High School (grades 9-12, generally yo) Prevalence of any current use (at least once in past 30 days) Every 1-2 years High School (grades 9-12, generally yo) Prevalence of BMI>=25 Every 1-2 years High School (grades 9-12, generally yo) Adult Risk Factors Indicator Frequency Age (age adjusted & stratified by gender) Data Source YRBS, National Outcome Measures Youth Survey, WHO GSHS, Local school health surveys or school program data. As above As above (with physical measures added to YRBS, GSHS, National Outcome Measures Youth Survey Data Source Alcohol Tobacco, Smoking Tobacco, Smokeless HTN Diabetes Prevalence of problem drinking (5 or more standard drinks for males; 4 or more standard drinks for females on any day of the week preceding the survey) Prevalence of current use (at least once in past 30 days) Prevalence of current use (at least once in past 30 days) Prevalence of high blood pressure (BP Sys 140mmHg and/or BP Dias 90mmHg) Prevalence of diabetes (FBS 126mg/dl or taking medicine for diabetes) At least every 5 years At least every 5 years At least every 5 years At least every 5 years At least every 5 years Adults: years Adults: years Adults: years Adults: years Adults: years NCD STEPS, BRFSS NCD STEPS, BRFSS NCD STEPS, BRFSS NCD STEPS, BRFSS NCD STEPS, BRFSS High cholesterol Prevalence of Cholesterol 190mg/dl At least every 5 years Adults (25-64) Age standardized WHO STEPS

14 Mortality Indicator Frequency Age Group (stratified by male and female) Data Source All cause # deaths/1000 per year- 3 year moving average Every 3 years (age standardized) Vital Statistics Life expectancy at age 40yo Using mortality data from past 3 years Every 3 years NA Vital Statistics Cause specific- CVD Cause specific- Cancer Cause specific- Chronic Pulmonary Disease Cause specific- Diabetes # deaths with CVD primary cause (codes per ICD list ) /1000 per year- 3 year moving average # deaths with Cancer primary cause (codes per ICD list ) /1000 per year- 3 year moving average # deaths with Chronic Pulmonary Disease primary cause (codes per ICD list ) /1000 per year- 3 year moving average # deaths with Diabetes primary cause (codes per ICD list ) /1000 per year- 3 year moving average Every 3 years (age standardized) Vital Statistics Every 3 years (age standardized) Vital Statistics and cancer registry Every 3 years (age standardized) Vital Statistics (age standardized) Vital Statistics