Improve Care Now: Partnering With Patients and Colleagues to Improve the Care of Children with IBD

Transcription

1 Improve Care Now: Partnering With Patients and Colleagues to Improve the Care of Children with IBD Sandra C. Kim, MD Division of Pediatric Gastroenterology, Hepatology, and Nutrition UPMC Children s Hospital of Pittsburgh November 9, 2018 Disclosures The speaker has no disclosures to report (*Disclaimer: My dog is always excited to learn about quality improvement in the care of children and teens living with IBD! She also has as much energy as Dr. Gold...) 1

2 Objectives Overview of inflammatory bowel diseases in children and adolescents Why is the concept of quality improvement important to our medical practice? What is Improve Care Now (ICN)? Inflammatory Bowel Diseases: IBD Chronic inflammatory diseases involving GI tract Abdominal pain Bloody stools Diarrhea Weight loss Growth problems Fatigue Fevers of unknown origin Extraintestinal manifestations 2

3 Extraintestinal Manifestations of IBD Area Systemic Hepatobiliary Endocrine Symptoms Growth failure Anorexia Malaise Fever of unknown etiology Primary sclerosing cholangitis Autoimmune hepatitis Delayed puberty Osteopenia/osteoporosis Extraintestinal Arthritis (Large joint/sacroiliac; peripheral joints) Arthralgias Dermatologic lesions (erythema nodosum; pyoderma gangrenosum) Ocular changes (uveitis; episcleritis) Nephrolithiasis (calcium oxalate stones) Commensal Microbiota Aggressive Protective Genetic Susceptibility Barrier Function Bacterial Killing Immunoregulation IBD Environmental Triggers Infections NSAIDs Diet Smoking Stress Immune Responses TH1 TH17 Defective Innate Adapted from Sartor (2011). Mucosal Imm 3

4 Children With IBD: Not Small Adults! Pediatric IBD Has Unique Characteristics Similarities between pediatric and adult IBD - GI symptoms - Extra-intestinal manifestations Presentation is more severe in children (Vernier-Massouille G, et al Gastroenterology; Van Limbergen J, et al Gastroenterology; Gupta N, et al Am J Gastro; Schaefer M, et al Clin Gastro Hep) - UC: Higher incidence of pancolitis (>80%) - Crohn s disease: Perianal disease; surgery - Infantile/early onset IBD Delay in growth, skeletal development, puberty Psychosocial impact of disease 4

5 How Are Our Kids with IBD Coping? Depression present in children with IBD (Szigethy E, et al and JPGN) Increased disease activity and steroid treatment correlates with depression Majority have mild depression; those with somatic depression usually with active disease/on steroids Lower HRQOL impacts healthcare utilization (Ryan JL, et al Inflamm Bowel Dis) Increased ED and psychology visits, hospitalizations, and telephone calls Quality of life and social interactions impacted (Engelmann G, et al Child Pysch Human Dev) ~1/3 1/2 children with limitations in activities of daily life The Cost Of Disease In Pediatric IBD Annual disease-attributable costs for IBD: $6.3 billion *Overall per patient costs greater in children vs. adults Kappelman,MD et al Gastroenterology 5

6 The Cost Of Disease In Pediatric IBD Costs: medical care and pharmacy benefits Children and teens incur greater costs the 1 st year post diagnosis as well as cumulative costs Baldassano, RN et al Gastroenterology (abstract) Impact of Treatments On Overall Cost U.S. healthcare costs related to IBD: $ billion Significant portion from biologic therapies Subgroup of patients >$45,000/yr; 64% costs from anti TNF van der Valk ME, et al Gut Mehta F Am J Managed Care Park KT, et al Am J Gastro 6

7 We Must Do Better! Children bear a disproportionate burden of IBD medically, psychologically, financially We need better predictors/models to move towards effective early intervention Clinical care, research, education, and quality improvement needs to focus on pediatric specific issues and outcomes What is a Learning Health System? Community Focus on outcomes Safe, evidence-based patient-centered care Best care at lower cost Research is a natural outgrowth of clinical care New knowledge is generated easier, faster, better and cheaper Innovative technology Multiple uses of data: clinical, improvement, research Operates continuously in real time Forrest CB, Margolis P, Seid M, Colletti RB Health Affairs 7

8 What is The Reliability of Medical Care? Patients receive only 60% of recommended care and medications There is a gap between recommended care and the care actually carried out What do we need to do? Prevent failure Identify/mitigate failure Redesign the process If medical care and patient self-management were more reliable, would outcomes be better? The Bell Curve: What Happens When Patients Find Out How Good Their Doctors Really Are? Care variability Assumption: Most places clustered around best outcomes Reality: Bell curve with a great normal middle Doctors have to step outside their comfort zone Compare success/failure with our peers Measure ourselves, and be more open Cystic Fibrosis Foundation Collected data since the 1960 s from 31 centers Significant improvement in life expectancy by 2003 Atul Gawande The New Yorker 8

9 How Can We Improve Care and Outcomes? The Model For Improvement Establish Aims and Measures Measure performance Identify gaps between standard and actual performance Make changes to close the gaps using tools to increase reliability Langley GJ, Provost LP et al The Improvement Guide. The Value Equation for Health Care Value = outcomes cost The Triple Aim: Improve health, care and cost Best Care at Lower Cost 9

10 What is Improve Care Now? Multidisciplinary quality improvement (QI) collaborative focusing on improving reliable, proactive care for children with IBD Started in 2007 with 7 core centers in the US Ongoing focus on QI and patient focused research Each center collects standardized data Look at individual and center performance Compare outcomes Collaboration: sharing tools and evidence 10

11 Purpose of ImproveCareNow Transform the health, care, and costs for all children and adolescents with Crohn s disease and ulcerative colitis by building a sustainable collaborative chronic care network, enabling patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. C3N Project Collaborative Chronic Care Network NIH Transformative R01 grant Transform ImproveCareNow into a C3N Join patients, parents, clinicians and researchers in a shared collaborative network Improve clinical practice, patient self-management, and disease outcomes Create a patient- and family-centered network Patient Advisory Council, Parent Working Group, Building Community Leadership, patient platform Develop innovative prototypes NIH NIDDK R01DK ImproveCareNow Network Care Centers, CCHMC Learning Networks Program 11

12 PCORI Patient Centered Outcomes Research Institute Create a PPRN: Patient Powered Research Network Engagement of patients and families in QI and research at their center and nationally Awareness Participation Contribution Ownership Patient Reported Outcomes PCORI PPRN Selby J et al JAMA Billet AL et al Pediatr Qatar Belgium England 107 Pediatric GI Centers 12

13 Communications Program 27 ICN Leadership Committees Coordinators Nurses Dieticians Psychologists Social Workers Patients Parents Clinicians Researchers Improvers 13

14 Patient and Family Centered Collaborative PATIENT ADVISORY COUNCIL Parent Mentoring in IBD Care Structured support system via peer mentoring for families of patients living with IBD Improving patient care by including parents as part of the IBD center Donegan A, et al Inflamm Bowel Dis 14

15 Collaboration Leads to Progress We all teach, we all learn To go fast, work alone To go far, work together Steal shamelessly, share seamlessly How Many Patients Are in the Registry? 250,000 32,000 registered 200, ,000 visits 150, ,000 50, ,000 patient-years Largest and fastest growing patient collaborative in the world 15

16 107 centers 940 ped GI 55% Of patients cared for by pediatric gastroenterologists 28,300 patients Growing to 75% Clinical Remission Rate in CD and UC PGA = Inactive (Physician Global Assessment) 85% 80% 81% 75% 70% 65% 60% 55% UCL LCL 50% 45% Apr 2007 Oct 2008 Aug 2010 Aug 2012 Jun 2015 Jul 2017 Centers >75% registered 16

17 Model IBD Care Guidelines A Guideline for Consistent Reliable Care: Diagnostic and therapeutic interventions that are appropriate and recommended for a very large percentage of children and adolescents with Crohn s disease and ulcerative colitis Patient visit Data collection Data entry Data storage ICN Act Plan Clinical care Automated data analysis Study Plan and carry out changes Do QI analysis Real time reporting to sites Research datasets Forrest CB, Margolis P, Seid M, Colletti RB Health Affairs 17

18 Automated Population Management Report Automated Population Management Report 18

19 Automated Pre-Visit Planning Report Guidelines Drug dosages 6TGN level Infliximab level Infliximab Ab level 19

20 Nutrition Status Satisfactory Definition Not At Risk or Failure At Risk Drop in WT %ile by 1 isobar or No WT gain (in 3 months) or 1-9 % loss or WT < 10th %ile for age Failure Drop in WT %ile by 2 isobars or WT Loss > 10 % or WT < 3 rd %ile for age Pediatric IBD Nutrition Algorithm Nutrition Classify Patients at Every Visit * Growth Algorithm does not apply to post-pubertal patients Growth Growth Status Satisfactory Definition Not At Risk or Failure At Risk Drop in HT %ile by 1 isobar or HT < 10 th %ile for age or HT velocity < 10 th %ile Failure Drop in HT %ile by 2 isobars or HT < 3rd %ile for age or Ht velocity < 3 rd %ile Satisfactory At Risk Failure Overwt/ Obesity (>85 th%ile) Satisfactory At Risk Failure Followup 6 months Annual RD evaluation 1. Reassess Disease Activity & Escalate Rx if patient not in Remission 2. RD Referral * F/U 4 weeks RD Referral/ Nutrition Ed for wt loss Consider Further Medical Eval Followup 6 months Annual RD evaluation 1. Reassess Disease Activity 2. Steroid Sparing Regimen 3. Tanner Stage & 4. Consider Endocrine Consult Bone Age 5. RD Referral * Reassess Growth in 6 months * nutritional labs,food record, set calorie/wt goals, oral supplements, vitaminsminerals Satisfactory At Risk Failure 1. Reassess Nutrition* 2. Increase Calories 3. Consider Behavior Modification/Appetite Stimulant Follow-up 1 month & Reclassify Failure < 3 months Follow-up 2-4 weeks & Reclassify Failure > 3 months Tube Feedings Satisfactory At Risk Failure 1. Reassess Nutrition* 2. Increase Calories 3. Consider Endocrine Consult Follow-up 3 months & Reclassify Consider Tube Feedings Follow-up 3 months & Reclassify 20

21 Project Leader: Aim Key Driver Diagrams Key Drivers Interventions Transition of Care Key Driver Diagram Global AIM To ensure smooth and effective transition of care* that leads to the best possible outcomes for patients with IBD *defined as successful transfer of care to adult GI providers ( successful transfer of care will be further defined in collaboration with participating centers.) SMART AIM Increase the number of ICN centers with an organized transition process** from to by April **defined as a standard, reliable method to support young adults as they acquire independent health care skills, prepare for an adult model of care and transfer to adult GI providers without disruption in care KEY DRIVERS Effective Communication Among Patients and Health Care Providers (Peds & Adult) Accessible, Appropriate Adult GI Providers Strong Psychosocial Support System Optimal Self- Management Support System High level of patient readiness (highly motivated patient?) INTERVENTIONS Standardized Transfer Form Content Work with CCFA and others to develop list of preferred adult GI providers for easy access Incorporate psychosocial screenings into clinic visits to assure patient emotional readiness Develop and test transition clinics Develop and test educational tools and materials to enhance patient knowledge Use a validated transition readiness scale (TRAQ) consistently 21

22 Challenges (and Success): PDSA PDSA: Plan, Do, Study, Act! 22

23 What if Improve Care Now Were a New Drug? Improve-imab Directions: Apply daily to healthcare delivery system Adverse effects: None known Benefits: 25% better chance of remission Annual Cost: The same as a 6-week course of mesalamine Benefits of Quality Improvement Standardizing care Model Care Guidelines IBD clinic templates Clinical pathways/protocols (i.e. EEN) Ability to review our patients in an efficient manner Population management Pre-visit planning process (PVP) Using QI methodology to address specific goals Learning from other ImproveCareNow centers Research opportunities (i.e. PRODUCE) 23

24 If help and salvation are to come, they can only come from the children, for the children are the makers of men. Maria Montessori Acknowledgments Richard Colletti, MD Sarah Myers, BSN MPH 24