National Hemophilia Program Coordinating Center (NHPCC)

Transcription

1 National Hemophilia Program Coordinating Center (NHPCC) Ann Forsberg, Associate Director Southeast Meeting, March 17, /19/2014 1

2 Outline of presentation NHPCC Goals HTC Survey Patient Needs Assessment NHPCC Activities 3/19/2014 2

3 National Hemophilia Coordinating Center In June 2012, the American Hemostasis Network was funded through HRSA to establish the first National Hemophilia Program Coordinating Center (NHPCC). Goal of the NHPCC is to collaborate with the eight regional networks to establish a more cohesive, high functioning national program and to present a national picture or the HTC network. 3/19/2014 3

4 HTC Survey Evaluating the TA Needs of the NHPCC 3/19/2014 4

5 National HTC Needs TA Assessment Determining the TA needs of the regions and HTCs (support, knowledge, advise, training, resources) Completed in June, 2013 Developed by South Carolina Rural Health Evaluation Center and approved by Advisory and Regional Leadership Committees Electronic survey sent from Regional Centers to HTC staff in June Content (12 questions) Discipline, number of patients Services provided by your HTC and through your institution Sources of advise, training and support Types of assistance used in past and what is anticipated in the future Best mechanism for you to obtain TA support Experience with Web Tracker 3/19/2014 5

6 % Responses Survey Respondents by HTC Regions (N=524) New England (n=80) Mid-Atlantic (n=53) Southeast (n=91) Great Lakes (n=102) Northern (n=53) 0 HTC Regions Great Plains (n=57) 3/19/2014 6

7 Breakdown of Respondents by Discipline in the Southeast (N=91) 20% 8% 14% 3% 6% 20% 29% Administrator Data Manager Hematologist Nurse Physical Therapist Social Worker Other 3/19/2014 7

8 % Responses Sources of Technical Assistance /19/2014 8

9 Technical Assistance Topics 340B program Models to support self-sustaining HTCs Grants applications and opportunities for financial support Outreach strategies Bridging geographic access to care Culturally competent patient care and education Transition of patients through stages of lifespan Patient care protocols Patient adherence Staff development Eligibility determination for insurance or pharmaceutical programs Information technology Web tracker/ data management Case management Genetic Education 3/19/2014 9

10 TA: National vs Southeast National TA Needs 1. WebTracker/Data Mgmt. 2. Staff Development 3. Grants/Financial Support 4. Lifespan Transition B Pharmacy & Geographic Access. Southeast Past TA Needs 1. Staff Development 2. Grants and Finance 3. Lifespan Transition 4. Web Tracker (CM) B Pharmacy 3/19/

11 Preferred Method of Delivery of TA Future TA Needs Hematologist Nurse Social Worker Physical Therapist Admin Data Manager Other Staff Development In-person In-person In-person In-person In-person Online Online Grants and Finance Electronic push Online Online Online Online Online Online Lifespan Transition Online Online In-person Online In-person Online Online 340B On-site On-site On-site On-site On-site On-site In-person Access to Care Online Online Online Online Online Online Online Outreach Online Online Online Online Online In-person Online Online In-person Eligibility Determination Patient Care Protocols Online Online Online Online Online Online Online Online Online In-person Online Online Online Online IT On-site On-site On-site Online Online Online On-site 3/19/

12 Summary The national HTC survey had a high response rate with nurses the most frequent staff to respond. RHNs are the most common source of TA. WebTracker, staff development, and grants/financial support are the top national TA priorities. Online and in-person educational sessions with other HTCs are the most preferred TA delivery method. The NHPCC and RHNs will use the survey as framework for National TA plan. 3/19/

13 National Patient Needs Assessment Assessing the Patients Perspective of the HTCs 3/19/

14 Patient Survey Overview Design and methods Survey respondents representative of population? Findings Conclusions and next steps 3/19/

15 Questionnaire Design and Methods Conducted by Center for Community Health and Evaluation Part of Group Health Research Institute, Seattle, Washington 4-page, mailed to HTC patients Closed-ended questions 24,308 households Input Review Draft Finalize Protocol Mailed from Regional Leadership Committee & NHPCC Advisory Committee existing questionnaires identify priority domains identified by Needs Assessment Workgroup draft questions and prioritize pretest with sample of HTC patients English and Spanish scannable and online versions anonymous; bar code linked to HTC no incentive paid 1 active patient per household HTCs distributed with cover letter to active patients (HDS, 2012) no followup 1/2/2014 ended 3/19/

16 Representativeness of Sample 4,004 Respondents of 24,308 Surveyed Population (16.5% Response Rate) Demographic Characteristics Sex % of Survey Respondents Males 73% 69% Age 25+ years 50% 37% Race/Ethnicity Non-White 25% 29% Disease Type Severe Hemophilia A&B 34% 26% Von Willebrand Disease Type 1 16% 34% % of Hemophilia Data Set Population 3/19/

17 Survey goal: Evaluation questions: Measure patient perceptions of the care they receive at HTCs and identify strengths, gaps, and opportunities for improvement Do patients report they received: How well did what they received meet their needs? What are patient perceptions regarding care delivery? Care and services needed? Information needed? Support for transition needed? Barriers to care/services Patient-centered visits/interactions with HTC team Coordination of care 3/19/

18 Services needed, received past 24 months Hematologist Hemophilia nurse Pharmacist Social Worker Physical therapist Dental care Orthopedist 24% 22% 50% 49% 50% 49% 44% 43% 38% 35% 83% 82% 78% 77% Needed Received 0% 20% 40% 60% 80% 100% 3/19/

19 How well services meet needs Hematologist 11% Well Very well 86% 97% Hemophilia nurse 10% 88% 98% Pharmacist 12% 83% 95% Social Worker 16% 77% 93% Physical therapist 17% 76% 93% Dental care 14% 74% 88% Orthopedist 17% 68% 85% 3/19/

20 Information needed, received Treatment plan HTC services Medical emergency Exercise Advice after hours Prevent bleeds Sexual Health 14% 12% 59% 57% 56% 55% 48% 46% 46% 44% 41% 40% 42% 40% Needed Received 0% 20% 40% 60% 80% 3/19/

21 How well information meet needs Well Very well Treatment plan 12% 83% 95% HTC services 12% 82% 94% Medical emergency 11% 82% 93% Exercise 13% 80% 93% Advice after hours 13% 77% 90% Prevent bleeds 14% 80% 94% Sexual Health 13% 49% 62% 3/19/

22 Perception of HTC Care Agree Strongly agree Saw HTC staff that were needed 21% 76% 97% HTC staff spent enough time 21% 76% 97% Sensitive to values and customs 21% 76% 98% HTC staff listened carefully 19% 77% 96% Questions were answered 22% 75% 97% Encouraged to make decisions about care 24% 71% 95% Helped coordinate care with PCP 25% 65% 90% Helped coordinate care with specialists 23% 70% 93% 3/19/

23 Barriers to care 69% reported no moderate or severe barriers Not a barrier Slight barrier Moderate barrier Severe barrier Taking time off from work/school 64% 21% 11% 4% Distance to HTC/travel costs 59% 21% 14% 6% Lack of transportation 89% 3% 6% 2% Lack of insurance 88% 3% 5% 4% High out of pocket costs 64% 21% 11% 4% Note: Top 3 barriers to receiving selected services because of insurance: Dental care, supply of factor and genetic testing 3/19/

24 Disparities in problems Odds Ratio of Having 5+ Problems with Services Unadjusted Adjusted White Hispanic/Latino African American Asian/Pacific Islander Other (Adjusted for region, age, gender and disease category) 3/19/

25 Conclusions and Next Steps High rating of HTC services and information Services being received Needed information being provided Services meeting needs Few barriers to care Travel, time, Insurance Some disparities by race/ethnicity More detailed analysis and follow-up focus groups to explore disparities and pinpoint priorities for improvement 3/19/

26 Survey Limitations Represents HTC patients only and is not generalizable to all patients. 16.7% of HTC patients may be a biased sample. Only HDS definition of patients were included. Severe hemophilia and older patients over represented and VWD, younger patients and minorities under represented. Limited sample size does not allow analyses of many subcategories. 3/19/

27 Meeting the Community s Needs Projects of National Significance Genetics Work Group 340B Work Group Quality Improvement Work Group 3/19/

28 Demonstration Projects of National Significance Projects that will provide a tangible product or best practice that can be adopted by other HTCs, regions Steve Humes Chair Review Committee consisted of multidisciplinary staff and consumers Transparent application and review process with review criteria published on the ATHN website Recipients are: Christine Kempton, MD TRANSIT: An interactive website to support for transitioning of children Regina Butler, RN A toolkit for women at risk for carrier status 3/19/

29 Genetic Education Coming Soon 3/19/

30 Promoting the 340B Program 340B Work Group 340B Work Group s goal is to promote the value of the 340B program to sustaining and enhancing HTC services. Developed a survey to collect quantitative and qualitative information. Surveys will be sent to 340B HTC programs that volunteer to complete surve.y Emphasis on services not reimbursable. FTEs supported by 340B from some regions. Develop succinct message to be distributed to HRSA, HTCs stakeholders. 3/19/

31 Quality Improvement Work Group To guide improvement in hemophilia care on a national level through the reporting and analyzing of data on health and patient-related outcomes, measures of access and engagement of the patient, and indicators of quality of care. 3/19/

32 QI Improvement Measures Assessment of priorities and measures Data Summit survey Patient Needs Across the Lifespan Survey Patient Needs Assessment Survey 3/19/

33 Criteria for Selection of Year One Measures Choosing a metric: Specific and Measureable Reasonable and Actionable (most likely already being collected through Clinical Manager) Meaningful to providers and patients 3/19/

34 Metrics - Year One Metrics Chosen: Prophylaxis Comprehensive Care Visits BMI Much work to be done. Definitions Methods of collection Method of analysis 3/19/

35 Southeast Regional Directors and Coordinators Hemophilia Treatment Centers in the Southeast Consumer and Chapters in the Southeast 3/19/