Overview of the Health Care Guidelines for Spina Bifida Across the Lifespan

Transcription

1 Overview of the Health Care Guidelines for Spina Bifida Across the Lifespan Brad Dicianno, MD Co-Chair, SB Healthcare Guidelines Steering Committee Chair, Professional Advisory Council at SBA Associate Medical Director for Adult Care at SBA

2 Disclosures No conflicts of interest to report. This project is supported by: The Spina Bifida Association Spina Bifida Collaborative Care Network The Centers for Disease Control and Prevention

3 Guidelines for Spina Bifida Health Care Services Prior guidelines published in 2006 Prenatal Counseling Care Coordination Psychosocial Development Learning & Education Family Functioning Sexual Development Independent Living Women s Health Latex Urology Skin (Integument) Orthopedics & Mobility Bowel Neurosurgery

4 Overview of the New Guidelines SBA and CDC convened steering committee as part of SBCCN Concluded an update and expansion needed 9 new topic areas suggested: Self- Management Transition Quality of Life Men s Health Respiratory & Sleep Nutrition & Obesity Physical Activity Health Promotion & Preventive Medicine Endocrine

5 Oversight Medical Director Tim Brei Steering Committee Co-Chairs Pat Beierwaltes Brad Dicianno Nienke Dosa Executive Committee Sara Struwe Judy Thibideau Julie Bolen Adrienne Griffin Lisa Raman Jerome Chelliah 24 Working Group Chairs Working Group members CDC Staff SBA Staff and Students

6 TIMELINE Timeline January 1, 2016 March 15, 2016 PHASE 1 PREPARATION Organization of Workgroups Organizing Conference Calls March 16, 2016 March 31, 2016 April 1, 2016 April 15, 2016 Workgroup Conference Call One April 16, 2016 May 15, 2016 Workgroup Offline Work May 16, 2016 June 15, 2016 Workgroup Conference Call Two June 16, 2016 to July 15, 2016 Patient Involvement PHASE II LITERATURE REVIEW AND ANALYSIS PROCESS July 16 December 31, 2016 Workgroups review literature PHASE III GUIDELINE DEVELOPMENT & PRODUCTION March 15 16, 2017 Nominal Group Technique Meeting Early April, 2017 Data will be sent back to workgroups End of June, 2017 Deadline for next workgroup drafts June to October, 2017 Process document drafted, workgroups generate review articles October 2017 White paper released PHASE IV HEALTHCARE GUIDELINE DISSEMINATION October 2017 and Beyond White paper disseminated, family friendly version created

7 Methodology Recognized consensus-building methodologies for the development of clinical practice guidelines Single Text Procedure Nominal Group Technique More than 80 experts participated in the process Multi-disciplinary groups Spans newborn to adult

8 Format of New Healthcare Guidelines Document Outcomes what we wish to achieve with good care Clinical questions important questions that were targets of the lit review Guidelines recommendations for care that are based on the lit review and clinical consensus Metrics for good care Research gaps important topics where research and clinical consensus are lacking Synergistic areas with NSBPR

9 Conclusions Encourages evidence- and consensus-based practices Published and disseminated to the SB community Goal to optimize outcomes and improve care for all people living with SB

10 References 1. Council PA. Guidelines for Spina Bifida Health Care Services Throughout the Lifespan. In: Merkens MJ, ed. version 3: Spina Bifida Association; 2006: O'Connell MR. Drafting Agreement The Single Text Approach. 2012; 3. Fisher R, Ury W. Getting to yes. Simon & Schuster Sound Ideas; Dunham RB. Nominal Group Technique: A Users' guide. Madison: Wisconsin School of Business. 1998;2. 5. Harvey N, Holmes CA. Nominal group technique: an effective method for obtaining group consensus. International journal of nursing practice. 2012;18(2): Nair R, Aggarwal R, Khanna D. Methods of Formal Consensus in Classification/Diagnostic Criteria and Guideline Development. Semin Arthritis Rheum Oct;41(2):95-105