Education and Counseling It is crucial for the patient to understand his or her cardiac defect and its consequences This is rarely the case when the patient enters the transition clinic Effective communication requires repetition, especially when patients have learning disabilities, complex cardiac conditions, or low levels of education In people with congenital cardiac disease, the effectiveness of providing patient education has been demonstrated.29–31 Aspects on which patients are to be educated are the heart defect, prior and current treatments and interventions, infective endocarditis and how to prevent it, contraception, pregnancy, the risk of recurrence, the importance of life-long follow-up, and the symptoms that require medical check-up if experienced Being knowledgeable does not necessarily mean that the patient is presenting with the corresponding behaviors.32 Therefore attention ought to be given to the acquisition of self-management skills Important self-management behaviors for people with malformed heart pertain to sports and other physical activities, tobacco use, alcohol consumption, nutrition, and illicit drug use In addition, psychosocial aspects should be covered during transition These aspects typically include career and vocational planning, employment, marriage and family planning, and insurability Indeed, patients wonder how their cardiac disease will affect their ability to obtain a job, health or life insurance, or a mortgage Provision of support and counseling on such issues during the transition to adulthood is essential Many children and young people with congenitally malformed hearts will be able to have any career they may choose The future of some patients, however, will include physical or other limitations They may need to be advised to pursue appropriate education and career pathways For example, a patient with the Fontan circulation should know not to become a bricklayer or a commercial trucker These patients, and their parents, should have a chance to discuss such issues before the patient reaches highschool age, and before important decisions are made, or actions taken, such as choosing a curriculum or dropping out of school As the long-term outcome of many complex cardiac conditions becomes clearer, evidence-based recommendations can be made in regard to future careers These will carry weight with future employers, and represent an opportunity for the clinic staff to act as advocates for their patients, who are often otherwise disadvantaged by the stigma attached to chronic cardiac disease Many patients will have difficulty in obtaining both health and life insurance.33 They may be denied coverage, or offered a heavily loaded premium based on out-of-date information relating to the risk of death Even favorable clinical factors, such as mild defect, normal functional status, and good left ventricular ejection fraction do not protect against constraints in insurance and mortgage applications.33 Support groups, such as the Grown Up Congenital Heart Disease Association in the United Kingdom (available at: http://www.guch.org.uk), have excellent links with insurance companies In the United States, the difficulties encountered by young patients with chronic conditions in obtaining health insurance are now recognized Opportunities vary between states, and it is hoped that legislation to provide a more uniform level of support will be enacted in the next few years A frequently neglected psychosocial aspect is end-of-life It may sound premature to talk about end-of-life issues with adolescents However, irrespective the age or the complexity of the cardiac anomaly, patients with congenital cardiac disease have expressed the strong wish to talk about end-oflife decisions with their health care providers.34 Before any educational or counseling intervention can be implemented, individual patients should be comprehensively assessed in terms of their knowledge, self-management, and psychosocial aspects In order to undertake a broad and generic assessment of the adolescent's health, the HEADS method has been developed.35 HEADS stands for Home; Education; Eating; Activities; Drugs including tobacco, alcohol and illegal drugs; Depression and suicide ideation; Sexuality, including contraception; Safety from injury and violence; and Self-harm HEADS is to be administered during an interview, and it guides the health care professional in systematically addressing all the issues that are important in terms of adolescent health Availability by Telephone, Email, or Other Technologies During the transition from being a dependent child to becoming an independent adult, the adolescent has to accomplish numerous developmental tasks This may be associated with substantial uncertainties and a lot of questions In between the scheduled outpatient visits, ad-hoc questions regarding the condition, therapy, transition process, appropriate health behaviors, or clinic appointments may emerge The congenital cardiac team should be available for questions from the patients and families, to avoid growing uncertainties or adoption of detrimental behavior The transition coordinator will play an essential role in this, by being available by telephone, email, or other contemporary communication technologies Information About and Contact With the Adult Congenital Heart Disease Clinic When patients are transferred from pediatrics to adult care, they are leaving a familiar environment and health care team.18 In itself, this is seen as normal.18 However, adolescents and their families express their wish to be informed about the processes in and organization of the adult congenital cardiac disease clinic, and want to meet the cardiologists, nurses, and other team members beforehand.18,36 Information leaflets about the team, group sessions to meet the health care professionals, or guided tours through the outpatient clinic are useful tools to inform adolescents and their parents in the pretransfer phase Guidance of Parents During the transition, there is an obvious shift in roles between the adolescent and the parents Adolescents expect that health care workers direct the information to them They want to be heard.18 At the same time, they still have the same expectations toward their parents, in that the parents keep them posted of all developments The adolescents consider their parents as the first point of contact and most important source of information.18 This means that parents should not be excluded from the transition Even if transition programs have dedicated time alone with the adolescents during transition visits, they still need to schedule time together with the parents to update and inform them.20,21 It should not be underestimated that parents are going through transition as well, and therefore need guidance.37 Meeting With Peers Adolescents with congenital cardiac disease explicitly indicate that they want to talk with peers who are in the same situation.38 Contact with peers can be confronting, but it also can be characterized by identification and feelings of ... Information About and Contact With the Adult Congenital Heart Disease Clinic When patients are transferred from pediatrics to adult care, they are leaving a familiar environment and health care team.18 In itself, this is seen as normal.18