Self Management and Health Care Transition: Trials, Tribulations and Triumphs

Cecily L. Betz, PhD, RN, FAANProfessor of Clinical Pediatrics

Keck School of MedicineDepartment of Pediatrics

Director of Research/Director of Nursing Training USC University Center of Excellence at CHLA

Director, Movin’ On Health Care Transition Program, CHLA Spina Bifida ProgramEditor-in-Chief, Journal of Pediatric Nursing

Date: March 19, 2017

Lecture title: Self Management and Health Care Transition : Trials, Tribulations and Triumphs

Speakers Name: Cecily L. Betz, PhD, RN, FAANProfessor of Clinical PediatricsKeck School of MedicineDepartment of Pediatrics

• Does not intend to discuss commercial products or services.

• Does not intend to discuss non-FDA approved uses of products/providers of services.

• “…is a dynamic, lifelong process that seeks to meet their individual needs as they move from childhood to adulthood. The goal is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. It is patient centered, and its cornerstones are flexibility, responsiveness, continuity, comprehensiveness, and coordination…”

(AAP, AAFP, ACP-ASIM, 2002)

Self Management and Health Care Transition

Health Care Transition (HCT) refers to the comprehensive services based upon an interdisciplinary framework of care that addresses the biopsychosocial needs of early adolescents (11-15 years of age), late adolescents (16-18 years of age), and emerging adults (18-25 years of age). This framework of services is utilized throughout the lifespan and intensifies in early adolescence to ensure adolescents and emerging adults learn the self-management knowledge and skills necessary to manage their daily treatment needs as independently as possible and become a literate health consumer. Comprehensive services include coordination of care that involves referrals to the service systems of education and training, employment, community living, rehabilitation and advocacy. (Society of Pediatric Nurses, 2017)

Self Management and Health Care Transition

Transfer of Care:

Transfer of care refers to the dual process of locating and arranging primary, specialty and interdisciplinary health care providers who provide care to adolescents as their eligibility for services provided by pediatric providers ends.

(Society of Pediatric Nurses, 2017)

Self Management and Health Care Transition

2002 Consensus ReportAmerican Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine

• Identified HCP responsible for transition planning• Identification of core knowledge and skills needed for HCT

• Portable and accessible medical summary• Written HCT plan by age 14 reviewed and updated annually

• Primary and preventive care guidelines apply (i.e. Bright Futures)

• Access to affordable and uninterrupted health insurance

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“The goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth including those who have special

health care needs and those who do not.” (Cooley et al., p. 182, 2011)

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American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians, 2011 Practice Recommendations

What are the Best Practices?

• AAP, (1996)

• AAP, AAFP, ACP, ASIM, (2002, 2011)

• SAM (Rosen et al., 2003; Blum et al. 1993)

• NAPNAP, (2001, 2008, 2014)

• HRTW, Maternal Child Health Bureau, Division of Children with Special Health Care Needs

• Got Transition? (2014, 2015, 2016)

• Society of Pediatric Nurses (2017)

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• Started our experience in learning more about self management in 1997

• Focus groups conveyed their lack of preparation for life• Now that I’ve graduated from high school, what am I suppose to do• I wasn’t expected to live until now, so what do I do?

• Led us to develop a comprehensive tool to assess range of health-related needs for adulthood in 1998

• California Healthy and Ready to Work Health Care Transition Assessment

Self Management: What We Learned

1. Do you have the necessary electrical supports and equipment?

2. Do you storage space for your supplies and equipment?

3. Does your home have wheelchair ramps and other housingmodifications (doors, tubs with hand rails)?

4. Are you able to safely recycle/dispose of supplies?

Have needed environmental modifications/accommodations:

1. Do you have a phone to use in case of an emergency?

2. Do you have the phone numbers of family and friends to call in emergencies?

3. Do have the phone number of the paramedics?

4. Do you know where the closest hospital emergency department is?

5. Have you contacted the fire department of your special needs in case you have to evacuate?

6. Have you contacted the gas/electric companies if you have more than usual service needs?

What to do in an emergency

• Is a process and it is not linear.• Involves many moving parts.• Requires visuals and technology.• Assumptions are not warranted!• Constant review and re-instruction is needed• Saving face is a reckoning force.• Needs for learning change.• If it could only be so simple!

Self Management

• Determination of baseline is essential and ongoing.• Scaffolding of skills is individualized• One size does not fit all• Self management needs to be conceptualized in terms of

hierarchy of skills• Immediate; daily management needs• Peripheral linked to daily needs (setting, circumstances, logistics)• Linkages to the family/social supports• Linkages to community

• Patterns of self management are not predictable

Self Management

• How and when to disclose information about their lived SB experience

• Medications• Reasons• Side Effects• Effectiveness

• Learn to use a Phone Tree• Access websites pertaining to SB• Use iPhone apps• Fully informed choices

Self Management: What We Learned and are Learning

• Providers who are disability-sensitive• Offices with disability-related durable medical equipment • Supplies specifications• Informed about high risk activities• Learn to file complaints with Civil Rights offices; customer

services• Understand benefits associated with insurance plans and other

programs • Use of visuals pertaining to SB and surgical treatments• Making “cold calls”

Self Management: What We Learned and are Learning

• Dealing with social situations• Sleep overs• Camps• School trips• Casual outings with friends• After school events

• School-related issues• Disclosure• Wear of braces/use of assistive devices• Clothing• Changing for PE• PE performance expectations• Provision of health-related accommodations• 1 to 1 school aide• Privacy issues

Self Management: What We Learned and are Learning

• Environment• Health Related Accommodations in Educational/Employment Settings• Issues pertaining to Disclosure• Accessible Recreational Areas• Community Inclusion• Available transportation

• Health Care System Domain• Transfer of Care• Enrollment in Health Insurance Plan• Supplies and Durable Medical Equipment

HCTRC Model and Self Management

• Family/Social Support Domain• Health Related Accommodations• Issues pertaining to Disclosure• Dependency pertaining Activities of Daily Living

• Individual• Bowel and Bladder Management• Skin Care• Managing Minor Illnesses

HCTRC Model and Self Management

• STARx Questionnaire (Ferris et al., 2015)

• The Transition Readiness Assessment Questionnaire (TRAQ) (Wood et al., 2015)

• UNC TRxANSITION Scale (Ferris et al. 2012)

• Measuring Transition Readiness: A Correlational Study ofPerceptions of Parent and Adolescents and Young Adults with Sickle Cell Disease (Speller-Brown, et al. 2015)

HCT instruments

Healthy and Ready to Work HCT Assessment (Betz et al., 2005)

Assessing readiness for transition from paediatric to adult health care: Revision and psychometric evaluation of the ‘Am I ON TRAC for Adult Care’ questionnaire (Moynihan et al., 2015)

HCT instruments

• ↑ Independence• ↑ Productivity• ↑ Self-determination• ↑ Self-efficacy• ↑ Well-being• ↑ Self-reliance• ↑ Quality of Life

Betz et al., 2015; Betz et al., 2013; Bloom et al., 2012; Campbell et al., 2016; Coyne et al. 2017; Crowley et al. 2011; Fair et al., 2015; Findley et al., 2015; Fredericks et al., 2011; Maturo et al., 2015; Prior et al., 2014; Scalda et al., 2017; Schultz et al., 2017; Speller-Brown et al., 2015; Van Staa et al., 2011; Williams et al., 2007; Woodward et al., 2012

Self Management: Critical Life Span Competencies

• ↑ Responsibility (deBeaufort et el. 2009; Fair et al., 2015; Fredericks et al., 2011; Lerret et al. 2012; Okumura et al., 2015; Ostlie et al.,2007; Rutishauser et al. 2011; Sonneveld et al., 2011; Speller-Brown et al., 2015; Van Staa et al., 2011; Weiner et al., 2011; Williams et al., 2007; Woodward et al., 2012)

• ↑ Readiness (McMillen & Rahavan, 2009; McPherson, et el, 2009)

• ↑ Independence (Anthony et al., 2009; Disabato et al., 2015; Fair et al, 2010; Fredericks et al., 2011; Giarelli, et al., 2008; Hess et al., 2010; Jedeloo et al. 2010; Lerret et al. 2012; Maturo et al., 2015; McDonagh, Shaw & Southwood, 2006; McDonagh, Shaw & Southwood, 2006; Okumura et al., 2015; Packel et al., 2013; Shaw et al., 2006; Vijayan et al., 2009; Williams et al., 2007; Wong et al., 2010; Woodward et al., 2012)

• ↑ Adherence (Babler et al., 2015)

• ↑ Autonomy (Bundock et al., 2011; Crowley et al. 2011; Fair et al., 2015; Fair et al, 2010; Fredericks et al., 2011; Hays, 2015; McDonagh, Shaw & Southwood, 2006; Ostlie et al., 2007; Rutishauser et al. 2011; Vijayan et al., 2009)

• ↑ Self Advocacy (Clariza et al. 2009; Hess et al., 2010; Moola & Norman, 2011; Okumura et al., 2015 )

• ↑ Self Efficacy (Crosby et al., 2017; Hays, 2015; Speller-Brown et al., 2015; Van Staa et al., 2011; Vijayan et al., 2009)

Self Management Inferred/Associated

• Health literacy (Hess et al., 2010; McDonagh, Shaw & Southwood, 2006; Vijayan et al., 2009)

• Activated (Crosby et al., 2017; Disabato et al., 2015)

• ↑ Functioning and Potential (Chaturvedi et al., 2009; Hilderson et al. 2009; Ostlie et al., 2007; Woodward et al., 2012)

• ↑ Navigating Skills (Iles & Lowton, 2010; Okumura et al., 2015; Weiner et al., 2011)

• Improved Decision Making Skills (Chaturvedi et al., 2009; Fair et al., 2015; McDonagh, Shaw & Southwood, 2006; Okumura et al., 2015; Tuchman, et al., 2008; Van Staa et al., 2011; Woodward et al., 2012; Wray, 2008)

• ↑ Self-Efficacy/↑ Self –Determination (Crosby et al., 2017; Hess et al., 2010; Van Staa et al., 2011; Woodward, et al. 2012))

Self Management Inferred/Associated

ReferencesAl-Yateem, N. (2013). Guidelines for the transition from child to adult cystic fibrosis care, Nursing Care and Young People, 25, 29-34

Betz, C.L. (2004). Transition of Adolescents with Special Health Care Needs: Review and Analysis of the Literature. Issues in Comprehensive Pediatric Nursing, 27:179-240.

Betz, C.L., Ferris, M.E., Woodward, J.F., Okumura, M.J., Jan, S., & Wood, D.L, authoring group for the Health Care Transition Research Consortium. (2014) The Health Care Transition Research Consortium Health Care Transition Model: A Framework for Research and Practice. Journal of Pediatric Rehabilitation Medicine, 7, 3-15, doi: 10.3233/PRM-140277

Betz, C.L., Lobo, M., & Nehring, W., N. (2015) Transition Needs of Parents of Adolescents and Emerging Adults with Special Health Care Needs and Disabilities. Journal of Family Nursing, 21 (3), 362-421, doi: 10.1177/1074840715595024

Betz, C.L., Nehring, W., Lobo, M., & Bui, K,., (2013). Voices Not Heard: A Systematic Review of Adolescents’ and Emerging Adults’ Perspectives of Health Care Transition. Nursing Outlook, 61:311-336.

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• Non adherence with medications is operationalized as < 80%.

• Evidence suggests that actual adherence is ↓ than self report.

• Problems with adherence and self management leads to ↑ adverse consequences and ↓ QoL.

(Greenley et al., 2010; Hommel et al., 2009; LeLeiko et al., 2013: Rapoff, 2010)

Self management and adherence

• Developmentally Based Skills Checklist (Annunziato et al., 2013)

• Short Form 36 Health Survey (Annunziato et al., 2013)

• Investigator developed tool to measure outcomes (Cadario et al., 2009; Chaturvedi et al., 2009)

• Satisfaction with Care (Craig et al. 2007; Valenzuela et al. 2011)

• Diabetes Knowledge Test (Pyatak et al., 2017)

Self Report

References

Betz, C.L., Smith, K.A., & Van Speybroeck, A. Hernandez, F.V., & Jacobs, R.A. (2015). Movin' on Up: An Innovative Nurse-Led Interdisciplinary Health Care Transition Program. Journal of Pediatric Health Care, doi: 10.16/j.pedhc.2015.08.005

Bloom, M. S., Kuhlthau, K., Van Cleave, J., Knapp, A. A., Newacheck, A. A., & Perrin, J. M. (2012). Health care transition for youth with special health care needs. 51, 213-219.doi:10.1016/j.jadohealth.2012.01007

Bridgett, M. Abrahamson, G. Ho, J. (2015). Transition, It's More Than Just An Event: Supporting Young People With Type 1 Diabetes. Journal of Pediatric Nursing, 30(5), e11-14. doi: 10.1016/j.pedn.2015.05.008.

Campbell, F., Biggs, K., Aldiss, S.K., O'Neill, P.M., Clowes, M., McDonagh, J., While, A., & Gibson, F. (2016) Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev. 29;4:CD009794. doi: 10.1002/14651858.CD009794.pub2.

Celona, C.A. (2015) Measuring Acuity and Patient Progress for Youth With Special HealthCare Needs in Transition Care Utilizing Nursing Outcomes. Journal of Pediatric Nursing, 30(5),e15-18. doi: 10.1016/j.pedn.2015.05.005.

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References

Chu, P.Y., Maslow, G.R., von Isenburg, M., & Chung, R.J. (2015) Systematic Review of the Impact of Transition Interventions for Adolescents With Chronic Illness on Transfer From Pediatric to Adult Healthcare. Journal of Pediatric Nursing. 30, e19-27. doi: 10.1016/j.pedn.2015.05.022.

Cooley, W. C., Sagerman, P. J., Barr, M. S., Ciccarelli, M., Hergenroeder, A. C., Klitzner, T. S., ... Flinn, S. K. (2011). Clinical report - Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128(1), 182-200. DOI: 10.1542/peds.2011-0969

Disabato, J.A., Cook, P.F., Hutton, L., Dinkel, T., Levisohn, P.M. (2015) Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach. Journal of Pediatric Nursing, 30(5):e37-45. doi: 10.1016/j.pedn.2015.06.014.

Fair, C., Cuttance, J., Sharma, N., Maslow, G., Wiener, L., Betz, C., Porter, J., McLaughlin, S., Gilleland-Marchak, J., Renwick, A., Naranjo, D., Jan, S., Javalkar, K., & Ferris, M., for the International and Interdisciplinary Health Care Transition Research Consortium. (2015). International and Interdisciplinary Identification of Health Care Transition Outcomes, JAMA Pediatrics, Published online November 30, 2015. doi:10.1001/jamapediatrics.2015.3168, 2015

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Ferris, M., Cohen, S., Haberman, C., Javalkar, K., Massengill, S., Mahan, J.D., Kim, S., Bickford, K., Cantu, G., Medeiros, M., Phillips, A., Ferris, M.T., & Hooper, S.R. (2015). Self-Management and Transition Readiness Assessment: Development, Reliability,and Factor Structure of the STARx Questionnaire. Journal of Pediatric Nursing, 30(5):691-699. doi: 10.1016/j.pedn.2015.05.009.

Findley, M.K., Cha, E., Wong, E., & Faulkner, M.S. (2015) A Systematic Review of Transitional

Care for Emerging Adults with Diabetes. Journal of Pediatric Nursing, 30, e47-62. doi: 10.1016/j.pedn.2015.05.019.

Fredericks, E.M., Dore-Stites, D., Well, A., Magee, J.C., Freed, G,L., Shieck, V.,Lopez, M. J. (2010) Assessment of transition readiness skills and adherence in pediatricliver transplant recipients. Pediatric Transplant, 14, 944-953. doi: 10.1111/j.1399-3046.2010.01349.x. .

Huang, J.S., Terrones, L., Tompane, T., Dillon, L., Pian, M., Gottschalk, M., Norman, G.J., Bartholomew, L.K. (2014) Preparing Adolescents With Chronic Disease for Transition to Adult Care: A Technology Program, e1639-e1648, DOI: 10.1542/peds.2013-2830

Mackie, A.S., Islam, S., Magill-Evans, J., Rankin, K.N., Robert, C., Schuh, M., Nicholas, D., Vonder Muhll, I., McCrindle, B.W., Yasui, Y., & Rempel, G.R. (2014) Healthcare transition for youth with heart disease: a clinical trial. Heart. 100(14):1113-1118. doi: 10.1136/heartjnl-2014-305748.

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Maturo, D., Powell. A., Major-Wilson, H., Sanchez, K., De Santis, J.P., Friedman, L.B. (2015) Transitioning Adolescents and Young Adults With HIV Infection to Adult Care: Pilot Testing the "Movin' Out" Transitioning Protocol. Journal of Pediatric Nursing, 30, e29-35. doi: 10.1016/j.pedn.2015.06.013.

Moynihan, M., Saewyc, E., Whitehouse, S., Paone, M., & McPherson, G. (2015). Assessing readiness for transition from paediatric to adult health care: Revision and psychometric evaluation of the ‘Am I ON TRAC for Adult Care’ questionnaire. Journal of Advanced Nursing, 71(6), 1324-1335. doi: 10.1111/jan.12617

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• Biomedical measurement (Annunziato et al. (2013; Cadario et al., 2009; Crowley et al. 2011; Lane et al., 2007; Vanelli et al., 2004)

• Preventive measures (Bundock et al., 2011)

• ↑ Clinic visits (Busse, et al., 2007; Craig et al., 2007; Pyatak et al., 2017; Vanelli et al., 2004)

• Condition status; Complications (Craig et al., 2007; Schultz et al., 2017; Prestidge et al., 2012; Pyatak et al.,

2017; Van Walleghem et al., 2008)

• Access to Adult Care (all citations of review)

• ED visits (Pyatak et al., 2017)

• ↓ Morbidity and Mortality (Findley et al., 2015; Speller-Brown et al., 2015)

Proxy Measures