Then They Grow Up: Transition Challenges for Adolescents and Young Adults with Congenital Heart Disease. Karen Uzark, PhD, CPNP

Transcription

1 Then They Grow Up: Transition Challenges for Adolescents and Young Adults with Congenital Heart Disease Karen Uzark, PhD, CPNP No relationships to disclose TAKE HEART CV TEAM SYMPOSIUM Saturday, March 19, 2016 Kensington Court Hotel, Ann Arbor

2 Background Currently 85-90% of children born with congenital heart disease (CHD) survive to adulthood, at least half may have complex CHD The number of adults with CHD in the United States now exceeds 1 million. Lapse of medical care is common in adults with congenital heart disease. As many as 50-75% of patients are lost to followup as adults (Moons et al, 2008). In patients with defects of moderate or greater complexity, 63% had lapses in care of 2 years or longer (Yeung et al 2008)

3 Background Lapse of care is associated with adverse outcomes, including significant morbidity, potential mortality, and likely contributes to significantly impaired quality of life. patients with lapses of care are more likely to be symptomatic, receive new cardiac diagnoses, and 3.1 times more likely to require urgent cardiac intervention at presentation. (Yeung et al, 2008) The proportion of patients with CHD admitted via the emergency department nearly doubled surrounding the transition to adulthood, age > 17 years (Gurvitz et al, 2007).

4 Background (continued) While lack of insurance is a barrier to receiving ongoing care in some patients (18%), a greater number of patients (33%) do not seek care because of a lack of knowledge regarding the importance of follow-up (Yeung et al, 2008). Well-informed patients are expected to recognize the importance of uninterrupted health care and thus medical sequelae could be detected and managed sooner (Saidi et al, 2009). Other adverse outcomes may be prevented improved quality of life.

5 Goal -Transition As stated by the American Academy of Pediatrics, the goal of transition in health care for young adults with special health care needs is to maximize lifelong functioning and potential through the provision of highquality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood.

6 Definition Transition is the process by which adolescents and young adults with chronic childhood illnesses are prepared to take charge of their lives and their health in adulthood. It is an educational process that ideally begins before children reach adolescence, and continues until they are capable of taking full responsibility for their care TRANSITION TRANSFER

7 Questions: How do you know when someone is ready to transition (or transfer)? How do we prepare them to transition? Patient-specific needs?

8 AHA Guideline Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues A Scientific Statement From the American Heart Association Craig Sable, MD, FAHA, Co-Chair; Elyse Foster, MD, FAHA, Co-Chair; Karen Uzark, PhD, PNP, FAHA, Co-Chair; Katherine Bjornsen, BSN, ARNP; Mary M. Canobbio, RN, MN, FAHA; Heidi M. Connolly, MD; Thomas P. Graham, MD, FAHA; Michelle Z. Gurvitz, MD, MS; Adrienne Kovacs, PhD, CPsych; Alison K. Meadows, MD, PhD; Graham J. Reid, PhD, CPsych; John G. Reiss, PhD; Kenneth N. Rosenbaum, MD; Paul J. Sagerman, MD, MS; Arwa Saidi, MB, BCh; Rhonda Schonberg, MS; Sangeeta Shah, MD; Elizabeth Tong, MS, RN, CPNP, FAHA; Roberta G. Williams, MD, FAHA; on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease (Circulation. 2011;123: )

9 Assessment of Transition Readiness in Adolescents and Young Adults with Heart Disease* Inclusion: Patients age years with CHD or transplant (+ parents if <18 years old) being seen for a routine visit. Administer the Transition Readiness Assessment (with PedsQL) via e-tablet and a Request for information checklist (paper) to indicate any topics about which they would like to receive further information/assistance (*J Pediatrics 2015, Dec. 167(6): )

10 Patient Population (n=164) Sex Female 66 (40.2%) Male 98 (59.8%) Race White 148 (90.2%) Age, median (range) 18.1 ( ) yrs Diagnoses Single ventricle 30 (18.3%) Other complex 22 (13.4%) Left heart lesions, operated 25 (15.2%) Tetralogy repair 18 (11.0%) Transposition of the great arteries 16 (9.8%) Heart Transplant 7 (4.3%) Other (VSD, right heart lesions, aortic coarctation, etc.) 46 (28.0%) Taking any medication 66 (40.2%)

11 Results: Knowledge Gaps! Frequency and percentage of patients perceived knowledge in Patients years of age with congenital heart disease or heart transplant (N=164) Question I know don t know/ Not sure 1. Do you know the name of your heart condition/surgery? 119 (72.6) 45 (27.4) 2a. Do you know the name of your heart medication? (N=66) 59 (89.4) 5 (7.6) 2b. Do you know what the medicines are for? (N=66) 53 (80.3) 13 (19.7) 2c. Do you know what could happen if you stopped taking your medicines? (N=66) 42 (63.6) 24 (36.4) 2d. Do you know how to refill your medication prescriptions? (N=66) 48 (72.7) 18 (27.3) 3. Do you know what symptoms or problems your doctor needs to know about? 113 (68.9) 50 (30.5) 4. Do you know how to contact your doctor? 101 (61.6) 61 (37.2) 5. Do you know how often you need to see a heart doctor? 143 (87.2) 20 (12.2) 6. Do you know whether or not you will need to see a heart doctor for the rest of life? 131 (79.9) 33 (20.1) 7. Do you know whether or not you need an antibiotic medicine when you go to the dentist? 147 (89.6) 17 (10.4) 8. Do you know what exercises or sports activities you can and cannot do because of your heart condition? 146 (89.0) 18 (11.0) 9. Do you know how to get health insurance when you are not covered by your parents plan? 38 (23.2) 121 (73.8) 10. Do you know whether or not your heart condition could affect your ability to get pregnant? (N=66) 29 (43.9) 37 (56.1) 11. Do you know whether or not your heart condition could get worse if you got pregnant? (N=66) 20 (30.3) 46 (69.7) 12. Do you know whether or not any medicines could be harmful to an unborn baby if you became pregnant? (N=66) 13. Do you know what someone with a heart condition like yours can do to protect herself from unplanned pregnancy? (N=66) 26 (39.4) 40 (60.6) 38 (57.6) 28 (42.4)

12 Results: Frequency of Knowledge Gaps in Patients years (n=164) Insurance 74% Pregnancy 62% Contraception 42% How to contact doctor 37% Symptoms to call for Name of heart condition 31% 27% Need for lifelong care 20% 66% of patients with knowledge deficits requested information Most frequent requests: pregnancy, contraception, symptoms to call for. Also requested information regarding exercise and stress management.

13 Results: Frequency of Knowledge Gaps in Patients 18 years old Insurance 65% Pregnancy 62% Contraception 24% How to contact doctor 23% Need for lifelong care 14%

14 Transition Readiness Scores (Mean ± SD) Overall (n=164) Self-Efficacy Score Range Age < 18 yrs. *66.3 ± 16.5 Age 18 yrs. *76.8 ± 17.9 Self-management score Range *38.8 ± 14.8 *54.2 ± scale with higher scores = greater self-management or selfefficacy. * P <0.001;

15 Relationship between Transition Readiness and Quality of Life Greater knowledge and higher perceived selfefficacy were associated with better psychosocial quality of life. Self-management not associated with quality of life?

16 Conclusions Transition knowledge deficits are common in year olds with heart disease and associated with decreased self-efficacy and self-management. The Transition Readiness Assessment using the e-tablet identified patient-specific transition needs and can facilitate patient-directed counseling. Transition knowledge deficits and low perceived self-efficacy are associated with worse psychosocial quality of life, especially in young adults. Lack of self-management skills, even among young adults, is common and not associated with quality of life, perhaps related to ongoing parental involvement with healthcare management.

17 Desired Outcomes/Aims to improve the patients and their families knowledge of the medical condition and lifestyle implications; to augment adherence to medical regimens; to enhance communication skills and self-advocacy; to promote skills in decision making and selfmanagement; to prevent loss to follow-up; to avoid inappropriate healthcare utilization; to maintain medical insurance; to achieve educational and vocational goals; to improve overall quality of life.

18 Strategies Assess transition readiness (knowledge, perceived selfefficacy, and self-management skills) Counsel parents to encourage self-management by adolescents increase communication with health care providers, assumption of responsibility for healthcare behaviors by adolescent/young adult patients Patient education provision of patient-specific information regarding lifestyle implications of congenital heart disease and healthcare needs Counseling or referral of patients for assistance with insurance, stress-management, social support, other psychosocial needs.

19 Goal: Successful transition to improve long-term outcomes and quality of life for this growing population of adults with congenital heart disease LPGA Teaches 2 nd grade

20 THANK YOU!