Colleagues:
1. Intro
Well, it’s been a long time since I have put together a Transition Digest, in part because there has been so much happening related to health care transition to digest. This issue includes information about several upcoming meetings and conferences; a few new (or improved) web resources; several article abstracts; and other announcements.
I have received questions about the Health Care Transition Blog? Is it up and running? The answer is NO, but I still hope to start the Blog, which would allow Digest subscribers to share their news, views and information directly.
2. Conferences and Meetings of Interest
2A. Genetic Diseases Of Children: Advancing Care And Research Conference
MARCH 8-9, 2011, Sheraton New York Hotel, Manhattan
Over 120 experts will lead in-depth discussions and debates at this national conference to engage an audience of researchers, clinicians, families, health advocates, federal and state government and industry leaders in developing recommendation for improved health outcomes, topics include;
Navigating the Healthcare System: Having a Family-Centered Medical Home
Meeting the Psychosocial Needs of Young Adults: Young Adult Perspectives
Looking Ahead: Health Care Transition for Young Adults with Rare Genetic Diseases
What Will Newborn Screening Look Like in 2020?
Complexities Of Genome Analysis For Genetic Diagnosis
Day To Day Challenges We Face
Best Practices For Achieving Optimized Levels Of Care
Enrolling In National History Studies And Clinical Trials
Register http://www.wadsworth.org/events/genetics/register.php
(I have the privilege of moderating the young adult panel and the medical home panel break-out presentations, and talking about health care transition as part of the “Looking Ahead” Plenary Panel)
2B. Special Interest Group on Health Care Transition and Disease Self-Management (SIG-HCT)
We are pleased to announce the formation of a Special Interest Group on Health Care Transition and Disease Self-Management (SIG-HCT) in association with the Academic Pediatrics Association. http://www.aps-spr.org/
This coming year the HCT-SIG will be co-chaired by a pediatrician (David Wood, MD) and a subspecialist (Maria Ferris, MD, MPH, PhD). The SIG is open to any members of any of the APS/SPR/APA societies and other interested individuals (outside individuals may attend a SIG meeting without charge).
In addition we will be inviting youth and families from local advocacy organizations.
Our vision is to create, through collaboration, research and advocacy, a system of health care that supports the optimal health of youth and young adults with special health care needs and developmental disabilities during transition to adulthood. Our mission is to create a forum to promote discussion, collaboration, research and innovation among scientists, clinicians, advocates, policy makers, as well as youth and families who are interested in improving the health and healthcare of adolescents and emerging adults as they transition from adolescence to adulthood and from child health systems to adult health systems.
The first meeting will be held during the 2011 APS/SPR/APA meeting April 30-May 3 in Denver, Colorado.
The SIG-HCT will meet on May 2nd from 8:00 AM to noon in the Colorado Convention Center Room 206 (The Conference Program indicates the meeting runs 8:30-11:30 but we are going to extend the time because we have so much to do!). If you have a conflict due to the extended time we apologize and would ask that you come to as much of the meeting as you can.
During the meeting we will have the opportunity for individuals to discuss and set an agenda for the SIG related to research, education and advocacy.
Abstract Submission Opportunity! Also, as part of the meeting we are going to have abstract presentations. This note serves as an announcement for abstract submission. De-identified abstracts will be reviewed and scored by an independent group of HCT experts and practitioners. Accepted abstracts will be invited to present at the HCT-SIG meeting. We encourage you to submit an abstract.
To submit an abstract go to:
https://uncodum.qualtrics.com/SE/?SID=SV_0JSnLdBK0ETNXRG
The deadline for submission of the abstract(s) is March 1, 2011 at 12:00 Midnight Pacific time.
2C. It’s Time for Me to Do What? Conference on Effective Health Care Transitions for YASHCN
March 25, 2011
John H. Ammon Medical Education Center, The Christiana Hospital
4755 Ogletown-Stanton Road
Newark, Delaware 19718
This conference will enable attendees to develop and share effective strategies to ensure the successful transition of young adults with special health care needs (YASHCN) into adult health care. The conference is designed for clinicians, parents/guardians and children or young adults with special health care needs.
Objectives
On completion of this program, clinicians will be able to:
- Create and enact management plans for the challenges Children with Special Health Care Needs (CSHCN) encounter during adolescence, including identity issues, mental health concerns, psychosocial development, need for independence and self-advocacy, and obstacles to obtaining adequate performance.
- Describe the components of a comprehensive medical summary that will facilitate the transition of YASHCN into adult care.
On completion of this program, parents/guardians and children and young adults with special health care needs will be able to:
- Discuss with their physician the importance of developing a transition plan for the child or young adult with special health care needs.
- Be more knowledgeable about what a successful transition plan includes and be more comfortable being a health care advocate for themselves or others.
Accreditation Statement
This activity has been planned and implemented in accordance with the Essential Areas and Elements of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of Nemours and the Christiana Care Health System. Nemours is accredited by the ACCME to provide continuing medical education for physicians.
Nemours designates this live activity for a maximum of 6.5 AMA PRA Category 1 Credits™. Physicians should only claim credit commensurate with the extent of their participation in the activity.
The Delaware State Board of Nursing accepts AMA PRA category 1 Credit for Nursing licensure contact hours.
For more information see:
http://www.pedseducation.org/conferences/conference.cfm?conferencecode=Transitions2011
Or contact Karen Bidus, Alfred I. duPont Hospital for Children, Office of CME
302-651-6752 or e-mail Reveal Email.
(I will be doing the key note presentation “Health Care Transition: Youth, Family and Provider Perspectives”, and talking about “Strategies for Effective Transition of YASHCN” as part of a break out panel.)
2D Improving Quality and Coordination of Care and Services for Children with Special Health Care Needs and their Families (NYMAC Summit)
New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC)
May 18-19, 2011
Radisson Plaza Lord Baltimore
Baltimore, MD
Concurrent sessions including presentations on HealthyTransitionsNY.org; Transition Models; Results of NYMAC Consumer Survey; and Patient-Centered Medical Home.
For more information about this conference, and to register, go to:
http://www.wadsworth.org/newborn/nymac/summit.html
(I have the privilege of moderating the young adult panel and the medical home panel break-out presentations, and talking about health care transition as part of the “Looking Ahead” Plenary Panel)
2E. 5th Conference on Emerging Adulthood
Society for the Study of Emerging Adulthood
October 27-28, 2011
Providence, Rhode Island
Conference highlights include:
- A full-day preconference workshop, Mental health in emerging adulthood (ages 18-29): Understanding and meeting the needs of this distinct age group on Wednesday, October 26th, 2011
- Keynote speaker, Professor Dan McAdams of Northwestern University will deliver a talk entitled, Life Authorship: The Psychological Challenge of Emerging Adulthood
- A debate: Today’s emerging adults: Generation me or generation we? between Professor Jean Twenge (San Diego State University) and Professor Jeffrey Jensen Arnett (Clark University)
- A debate in partnership with the Society for the Study of Human Development entitled: Does Brain Development Promote Risk Behavior in Emerging Adulthood—or Not? (participants to be announced)
- An Invited Symposium on Emerging Adults Living with Chronic Health Conditions
- This conference will mark the official establishment of the Society for the Study of Emerging Adulthood (SSEA).
For more information about this conference, see: http://www.ssea.org/conference/index.htm
The conference organizers welcome submissions for Posters, Papers, Symposia, and Innovative Sessions and encourage proposals from a wide variety of disciplines on topics related to development from age 18 to 29. The Call for Proposals is available at www.ssea.org.
Proposal submission deadline is April 15th, 2011
(I am co-chairing the Invited Symposium on Emerging Adults Living with Chronic Health Conditions; and will be presenting during the Symposium about gaps in current knowledge and ways in which Emerging Adult theory and research could support improvements in the organization and delivery of health care transition services and supports.) Also see item 4E, below (new HCT-related articles)
3. Federal Information & Guidance relevant to HCT
3A Joint Guidance on the Application of the Family Educational Rights and Privacy Act (FERPA) and the Health Insurance Portability and Accountability Act of 1996 (HIPAA) To Student Health Records
See: http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/hipaaferpajointguide.pdf
The purpose of this guidance is to explain the relationship between the Family Educational Rights and Privacy Act (FERPA) and the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule, and to address apparent confusion on the part of school administrators, health care professionals, and others as to how these two laws apply to records maintained on students.
It also addresses certain disclosures that are allowed without consent or authorization under both laws, especially those related to health and safety emergency situations. While this guidance seeks to answer many questions that school officials and others have had about the intersection of these federal laws, ongoing discussions may cause more issues to emerge.
Contact information for submitting additional questions or suggestions for purposes of informing future guidance is provided at the end of this document. The Departments of Education and Health and Human Services are committed to a continuing dialogue with school officials and other professionals on these important matters affecting the safety and security of our nation’s schools.
3B. Provider Guide: Communicating With a Patient’s Family, Friends, or Other Persons Identified by the Patient-
See: http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/provider_ffg.pdf
This is a guide for health care providers to help them determine when they can disclose a patient’s health information to the patient’s family, friends, or other identified by the patient.
The following is a summary table from this document
HIPAA Privacy Rule Disclosures to a Patient’s Family, Friends, or Others Involved in the Patient’s Care or Payment for Care
| Family Member or Friend | Other Persons | |
|---|---|---|
| Patient is present and has the capacity to make health care decisions | Provider may disclose relevant information if the provider does one of the following:
(1) obtains the patient’s agreement (2) gives the patient an opportunity to object and the patient does not object (3) decides from the circumstances, based on professional judgment, that the patient does not object Disclosure may be made in person, over the phone, or in writing. |
Provider may disclose relevant information if the provider does one of the following:
(1) obtains the patient’s agreement (2) gives the patient the opportunity to object and the patient does not object (3) decides from the circumstances, based on professional judgment, that the patient does not object Disclosure may be made in person, over the phone, or in writing. |
| Patient is not present or is incapacitated | Provider may disclose relevant information if, based on professional judgment, the disclosure is in the patient’s best interest.
Disclosure may be made in person, over the phone, or in writing. Provider may use professional judgment and experience to decide if it is in the patient’s best interest to allow someone to pick up filled prescriptions, medical supplies, X-rays, or other similar forms of health information for the patient. |
Provider may disclose relevant information if the provider is reasonably sure that the patient has involved the person in the patient’s care and in his or her professional judgment, the provider believes the disclosure to be in the patient’s best interest.
Disclosure may be made in person, over the phone, or in writing. Provider may use professional judgment and experience to decide if it is in the patient’s best interest to allow someone to pick up filled prescriptions, medical supplies, X-rays, or other similar forms of health information for the patient. |
3C. Young Adult Insurance Information (from HealthCare.Gov)
See: http://www.healthcare.gov/foryou/youngadults/
3D. Insurance Information for People with Disabilities (from HealthCare.Gov)
See: http://www.healthcare.gov/foryou/disabilities/index.html
4. New HCT-related articles
4A. The International Journal of Child and Adolescent Health, Volume 3 Issue 4
The International Journal of Child and Adolescent Health, Volume 3 Issue 4 is a special issue that is devoted to the topic of health care transition. It contains 17 articles, including an introductory editorial that is available as a free – open source – document.
To access the editorial entitled “Transition from Pediatric to Adult Care”, go to: https://www.novapublishers.com/catalog/product_info.php?products_id=22980
To review the Table of Contents of this special issue, go to:
4B. Ferris M, Adolescents and Emerging Adults with Chronic Kidney Disease: Their Unique Morbidities and Adherence Issues. Blood Purification 2011;31:203–208
Medical advances have increased the survival rates of adolescents and emerging adults with chronic kidney disease and end-stage kidney disease. Patients in these two age groups share many characteristics: their brain will fully develop in their late 20s; they have cognitive impairment related to disease severity and duration, are at greater risk of nonadherence, and need to learn to manage their complex medical condition and comorbidities while trying to achieve independence from their parents. The medical and psychosocial characteristics of these patients are discussed, and possible strategies for their care suggested.
4C. Philpott, J. Transitional Care in Inflammatory Bowel Disease. Gastroenterology & Hepatology Volume 7, Issue 1 January 2011
Transitional care is an organized effort to provide pediatric patients with the tools and resources they need to assume personal responsibility for their medical care while facilitating their transfer from a pediatrician to an adult practitioner. Since inflammatory bowel disease (IBD) is usually chronic and up to 25% of IBD patients are diagnosed before the age of 18 years, transitional care is an important consideration for adolescent and young adult patients. The importance of transitional care for chronic diseases that begin in childhood has been recognized in a number of published recommendations. However, most of these recommendations arise from intuitive reasoning, as physicians lack information regarding the need for transitional care, optimal delivery protocols, and the efficacy of transition programs. Even fewer studies have been published regarding transitional care in IBD. Current guidelines stress the importance of providing patients with educational resources to help them develop the skills they need to manage their care as independent adults, introducing the concept of transfer to adult care in advance of the actual transfer, and developing routes of communication to facilitate the transfer from pediatric to adult care providers. Future studies should aim to elucidate which programs are effective and how they should be implemented.
4D. Childhood Chronic Illness Affects Future Income, Education, Career
See: http://www.sciencedaily.com/releases/2011/02/110205162504.htm
ScienceDaily (Feb. 7, 2011) — Today, more children than ever survive serious chronic illness. Many thrive as young adults, but a large new study finds that for some, early illness can lead to fewer years of education, more joblessness and lower pay. The good news is that when they grow up, these kids are just as likely to blossom socially, enjoy romantic relationships and get married as healthy kids, finds the study in the Journal of Adolescent Health online. ( http://jahonline.org/inpress )
Researchers led by Gary Maslow, M.D., looked at two sets of interview data from the National Longitudinal Study of Adolescent Health. The more than 13,000 respondents were middle or high school students during the 1994-1995 school year. The study compared participants with childhood illnesses — cancer, heart disease, diabetes or epilepsy — with those who either became ill as adults or who had never had one of the four medical conditions. As a group, children with long-term illness are “are at very high risk of educational and vocational problems,” said Maslow, a primary care research fellow at the University of North Carolina at Chapel Hill and a pediatrician at the Duke University Medical Center.
The study found significant differences as participants reached adulthood — ages 24 to 32. Children with chronic illness were less likely to graduate from high school, attend college or graduate from college. Only 52.5 percent were employed, compared with 67.5 percent of those with no illness or adult-onset illness. Income was $5,157 lower on average for those with childhood illness, who were twice as likely to need public assistance during the six-year study period. However, “even though there are differences, the vast majority of people with chronic illness are doing quite well,” said Stephen Daniels, M.D., pediatrician- in-chief at Children’s Hospital in Denver. He has no affiliation with the study.
In many ways, childhood illness survivors are keeping up with their peers, the study shows. “These kids are very socially resilient and do manage to form connections. It may take them longer, perhaps, but by and large they can form those peer relationships,” Maslow said. “In terms of getting married, having children, living independently and having high-quality romantic relationships, they did as well as kids without significant illness.”
When a child becomes sick, a family’s attention naturally turns to medical issues above all else. “Initially, parents are focused on obtaining appropriate medical care for their children and especially with cancer, they worry about survival,” said Martha Askins, Ph.D., psychosocial director of the Adolescent and Young Adults (AYA) Program at the Children’s Cancer Hospital at MD Anderson. “Suddenly, usual daily activities and routines such as school take a back seat to the diagnosis and treatment of the child’s illness.” However, she said, “once they’ve gained confidence that the treatment seems to be working well, and they really see that there’s hope, they want their child to have as normal an experience as possible socially and educationally.” …
Daniels said that with “half a million kids with special health care needs turning 18 each year,” “we want to be careful to win the battle but not lose the war. As we do better in health care, we also want to do more so these children have a better life experience and a better chance.”
The article referred to in this article is: Maslow, G. “Growing Up With a Chronic Illness: Social Success, Educational/Vocational Distress. in the Journal of Adolescent Health online ahead of print (available on-line only) ( http://jahonline.org/inpress ).
4E. Luyckx, A typology of coping with Type 1 diabetes in emerging adulthood: associations with demographic, psychological, and clinical parameters
J Behav Med (2010) 33:228–238
The present study set out to develop a typology of illness coping (as assessed through tackling spirit, illness integration, passive resignation, and avoidance coping) in a sample of 194 emerging adults (18–30 years) with Type 1 diabetes. Four groups, each with their own unique profile scores on illness coping, were identified through cluster analysis: active integrated, passive avoidant, high generic low integrated, and low generic high integrated coping. These clusters were differentiated on the basis of demographic, psychological (problem areas in diabetes, illness perceptions, depressive symptoms, and self-esteem), and clinical parameters (HbA1c-values indexing glycemic control). The active integrated cluster (and, to a lesser extent, the low generic high integrated cluster) evidenced the most optimal profile (i.e., better glycemic control, low depressive symptoms, etc.), the passive avoidant cluster (and, to a lesser extent, the high generic low integrated cluster) the least optimal profile. Implications for the study and practice of coping with a chronic illness are discussed.
The following is from the discussion section of this article:
“Apparently, in the case of Type 1 diabetes, accepting and integrating the illness into one’s self seems to be a powerful coping mechanism in emerging adulthood. When emerging adults are able to accept their diabetes as part of themselves and integrate it into their personality, they seem to be better equipped to tackle the many daily demands of this illness and, by extension, they might even be better equipped to tackle the normative developmental tasks they are facing, such as finding their niche in society (Seiffge-Krenke 2001). Especially the success in transitioning from pediatric to adult care—being an important task for young people afflicted with diabetes (Weissberg-Benchell et al. 2007)—might be affected by the degree to which diabetes is accepted as part of one’s self. When the many daily responsibilities accompanying this illness have been accepted and internalized, emerging adults are more likely to feel empowered to autonomously and successfully manage their illness (Luyckx and Seiffge- Krenke 2009; Williams et al. 1998).”
And
Luyckx, Identity Development, Coping, and Adjustment in Emerging Adults With a Chronic Illness: The Sample Case of Type 1 Diabetes
Journal of Adolescent Health 43 (2008) 451–458
Purpose: The present study focused on identity development in emerging adults (aged 18–30 years) with type 1 diabetes. The three study aims were to examine the following: (1) whether identity development was affected by having diabetes, as compared with development in a nondiabetic sample; (2) how identity development was related to depressive symptoms, coping with diabetes, and diabetes-related problems in the diabetic sample; and (3) whether the pathways from identity development to problems with diabetes and depressive symptoms were mediated through coping strategies in the diabetic sample.
Methods: A total of 194 emerging adults with type 1 diabetes and 344 nondiabetic emerging adults participated.
Results: First, using analyses of variance, some mean identity differences between the diabetic and comparison samples were found, with emerging adults with diabetes scoring lower on proactive identity exploration. Using cluster analysis, we found that the same identity types or statuses emerged in both the diabetic and nondiabetic samples. Second, in emerging adults with diabetes, these identity statuses were differentially related to diabetes-related problems, depressive symptoms, and illness coping, with the identity statuses representing a strong sense of identity being accompanied by less diabetes-related problems and depressive symptoms and more adequate coping strategies. Third, using structural equation modeling, the pathways from a strong sense of identity to diabetes-related problems and depressive symptoms were mediated through adaptive and maladaptive coping.
Conclusions: Clinicians should be sensitive to the normative task of identity development in emerging adults with diabetes because identity development can function as a resource in coping with and adjusting to diabetes.
5. On the Web
5A. FloridaHATS (Health and Transition Services)
See: http://www.floridahats.org/
FloridaHATS is a collaborative program of the Florida Department of Health, Children’s Medical Services Network, Florida Developmental Disabilities Council, and other partners (including JaxHATS and the HCT Initiative at the University of Florida) throughout the state of Florida.
The mission of FloridaHATS is to ensure successful transition from pediatric to adult health care for all youth and young adults in Florida, including those with disabilities, chronic health conditions or other special health care needs.
The FloridaHATS site includes a wealth of materials for providers, families and youth, and communities that are working to develop transition systems.
Highlights include:
A new publication “Just The Facts: The 411 on Health Insurance for Young Adults Ages 18-30 in Florida”
See: http://www.floridahats.org/?page_id=627
A web-based “Health Care Transition Training Program for Professionals”, that offers up to 4 hours of free continuing education credits to Florida providers.
See: http://www.floridahats.org/wp-content/uploads/2010/03/floridahats_hct4hcp_brochure1.pdf and
See: http://www.aheceducation.com/ELearning/CourseCatalog.aspx
Transition Readiness Assessment Questionnaire (Version 4.1)
http://www.floridahats.org/wp-content/uploads/2010/03/traq_4.1.pdf
Toolbox for Health Care Providers
See: http://www.floridahats.org/?page_id=608
5B. Got Transition
See: http://www.gottransition.org/ (under development)
Got Transition is the new National Health Care Transition Center supported by a cooperative agreement between the US Maternal and Child Bureau/HRSA and the Center for Medical Home Improvement (CMHI) at Crotched Mountain Foundation. Through partnerships among youth, families, health professionals, and policy makers, Got Transition will focus on the implementation and dissemination of health care transition best practices in primary care medical homes and specialty settings for youth and young adults.
5C. Healthy Transitions: Moving From Pediatric to Adult Care
See: www.HealthyTransitionsNY.org
The www.HealthyTransitionsNY.org website is an interactive curriculum and toolkit for youth with developmental disabilities ages 14-25 years, family caregivers, and health care providers. The website is fully ADA accessible and also provides automated Spanish language translation. It features video vignettes that demonstrate health transition skills and interactive tools that explicitly support collaboration. The goal is to raise awareness about developmental disabilities, to improve communication, and to build effective partnerships during the transition from pediatric care to adult health care.
I have had the opportunity to learn from and work with Dr. Nienka Dosa (Dir. NYS Institute for Health Transition Training) and the other staff who developed the HealthyTransitions site. I think that their use of short videos to teach essential skills, like making an appointment, scheduling transportation, and doing paperwork at checking in, are especially useful.
See: http://healthytransitionsny.org/skills_media/video_show
Dr. Dosa will be doing a presentation about this site at the upcoming NYMAC Summit (see item 2D, above).
In consultation with Dr. Dosa and her colleagues, my staff at the Institute for Child Health Policy (University of Florida) adapted several of the training videos and related materials with/for JaxHATS, the primary care transition clinic at the University of Florida, Jacksonville. We made these revised versions because David Wood, MD (Medical Director of JaxHATS) felt it was important to have JaxHATS providers, staff, materials, and settings in the materials he provided to his patients; it made it more likely that patients would watch a video from beginning to end, would feel that the information was relevant to them, and would be remember and make use of the information provided in the videos.
See: http://jaxhats.ufl.edu/tc.php and http://jaxhats.ufl.edu/
5D. Project Search (Cincinnati Children’s Hospital)
http://www.cincinnatichildrens.org/svc/alpha/p/search/
Project SEARCH was awarded the 2004 New Freedom Initiative award from the Department of Labor. This award recognizes businesses and people that have demonstrated exemplary and innovative efforts in furthering the employment and workplace environment for people with disabilities.
In 1995 the American College of Healthcare Executives adopted a policy statement that reads, in part, “…healthcare executives must take the lead in their organizations to increase employment opportunities for qualified persons with disabilities and to advocate on behalf of their employment to other organizations in their communities.”
With this statement as a guiding principle, Project SEARCH serves people with disabilities through innovative workforce and career development. Through this process we educate employers about the potential of this underutilized workforce while meeting their human resource needs.
Project SEARCH provides employment and education opportunities for individuals with significant disabilities. The program is dedicated to workforce development that benefits the individual, community and workplace
5E. Inside the Teenage Brain
The Six Part Frontline Series “Inside the Teenage Brain” can now be viewed online at:
http://www.pbs.org/wgbh/pages/frontline/shows/teenbrain/
6. Final Words
Please feel free to forward the Digest to others, and let them know that they can be added to the Digest distribution list by sending an e-mail to me.
If you get multiple copies of the digest, please send me an e-mail.
If do not want to receive the digest, please send me an e-mail.
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John Reiss
Transition Digest Editor
Institute for Child Health Policy
University of Florida
Reveal Email
http://hctransitions.ichp.ufl.edu
