Explanation for Adolescents, Young Adults and Families
Transition is an ongoing, collaborative process that involves preparing for and adjusting to a shift from pediatric-centered healthcare to adult-centered healthcare.
Starting at age 12 years, all patients being followed at our Metabolism Clinic at Boston Children’s Hospital will begin the process of transitioning to adult healthcare. At this time, healthcare providers will support young people and their families to understand the benefits and process of moving from pediatric-centered to adult-centered healthcare.
In our clinic, this means paying attention to medical care, educational/work adjustments, and social adjustment. Medically, healthcare transition does not always mean transfer of care, but rather a shift in how care is provided. Young people need to gradually assume more responsibility for their healthcare choices and treatment. Families need to adjust as the young person gains independence from parents. Assistance may still be required but may come from roommates, friends, spouses or home health aides.
Young people with metabolic conditions will be encouraged in their educational and occupational pursuits and supported in obtaining accommodations for their medical needs, as appropriate. Individuals who have cognitive limitations and/or difficulties meeting self-care needs will be helped to obtain long-term planning about living situations, financial support and legal guardianship, as needed. Socially, healthcare transition involves coming to terms with issues related to friendships, dating, sex, reproduction, and life expectancy. Moreover, parents and healthcare providers need to recognize the age-appropriate task of young people to establish an identity apart from the diagnosis. Providers need to remember that young people may engage in exploration and risk taking before accepting new responsibilities and commitments. Therefore, our goal as healthcare providers is to establish a safety net and support system, as well as uninterrupted, comprehensive, culturally sensitive, and coordinated care. To reach these goals, we have established the following Transition Policy:
- Ages 12-17 years: Starting at age 12 years, every child visits independently for at least a few minutes with each healthcare provider.
- Age 16 years if guardianship will be needed: The physician, social worker and psychologist will begin the process. Intelligence testing and assessment of adaptive behavior must be completed prior to the 18th birthday.
- Age 17 years: The physician, nurse practitioner or social worker on the team will introduce the topic of a healthcare proxy. By age 18 years, all patients seen in the clinic will have a signed healthcare proxy document on file.
- Ages 18 years and older: The patient visit is independent from the parent, although the patient may request that the parent joins for discussions after the sessions with the healthcare providers. Laboratory results are reported directly to the patient.
- Medical Records and Confidentiality
- At age 13 years and above, the child must provide permission (through the electronic system) for the parent to enter the Patient Portal.
- At age 18 years and above, all psychotherapy notes are confidential and not accessible on the Patient Portal.