Metabolism Clinics – New England Region
This policy is for staff at Metabolism Clinics in the New England Region who are caring for patients aged 12-17 with metabolic disorders. The policy is structured around best practices in enabling patients to transition successfully to adult health care. It includes information about guardianship, healthcare proxies, parent and patient visiting policies, inpatient visits, medical records, and our Transition Toolkit for teens, among other resources.
- Ages 12-17 years: Starting at age 12 years, every child visits independently for at least a few minutes with each healthcare provider. This can occur before or after the meeting with the parents and child together. The independent visit can take place during the physical exam or other part of the visit. The goals for this policy are to familiarize the child with his/her metabolic condition and provide an opportunity for the provider and patient to discuss sex, substance use/abuse and other issues without the parents in the room. The healthcare provider should use the Metabolism Visit Confidential designation in PowerChart or a similar designation when writing the clinical note regarding this conversation in the electronic medical record. (This note should not be included in the Patient Portal).
- Age 16 years if guardianship will be needed: The physician, social worker and psychologist will provide documentation for the guardianship application (a medical form written by the physician and a review report form completed by the clinical team, usually by the social worker). Intelligence testing and assessment of adaptive behavior must be completed prior to the 18th birthday. This will involve an IQ test and the Adaptive Behavior Assessment System (ABAS), or a comparative tool, needed for guardianship. By age 17 1/2 all forms should be completed.
- Age 17 years: The physician, nurse practicitioner or social worker on the team will introduce the topic of a healthcare proxy. Written forms will be provided around age 17 1/2 and by age 18 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.
- Adult inpatient admissions: The policy at each hospital for admission of adults to the inpatient service will be followed.
- 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.
- Each provider should document in the medical record that Transition was discussed and that educational materials on transition, a healthcare proxy, or other information was provided.
- The Transition Toolkit, including a knowledge test/checklist and brief description of the disorder in adults can be found at NewEnglandConsortium.org.
- Paper copies of the disease-specific Transition Toolkits can be obtained from Children’s Hospital in Boston. Please contact Dr. Susan Waisbren at email@example.com.
- Questionnaires for adults will also be available. These will include the NIH PROMIS® questionnaires for Anxiety, Cognitive Function, General Concerns, and Satisfaction with Social Relationships, the Neuro-QoL, and for New England Clinics, the ABAS-II. These instruments can be used for screening emotional well-being and quality of life. See sidebar below for additional information about these questionnaires.
- Quality Improvement Measurement (Evaluation of Transition Policy)
- The percentage of patients ages 12 years and older for whom “Transition” was documented in the medical record will provide a quantitative measure for evaluating this transition policy.
- For patients who completed the ABAS, improvements in the “Self-Care” score, which is generally below the normative mean in patients with metabolic disorders, can also be calculated.
Additional Information about the Cognitive Function and Quality of Life Assessments
Patient Reported Outcomes Measurement Information System (PROMIS®) is a system of highly reliable, precise measures of patient–reported health status for physical, mental, and social well–being. PROMIS tools measure what patients are able to do and how they feel by asking questions. PROMIS’ measures can be used as primary or secondary endpoints in clinical studies of the effectiveness of treatment.
Neuro-QoL is a set of self-report measures that assesses the health-related quality of life (HRQOL) of adults and children with neurological disorders. Neuro-QoL is comprised of item banks and scales that evaluate symptoms, concerns, and issues that are relevant across disorders – along with measures that assess areas most relevant for specific patient populations. This free questionnaire allows patients to report on their own experiences.
The ABAS-II provides a comprehensive, norm-referenced assessment of the adaptive behavior and skills of individuals from birth to age 89. The test’s ease of administration and scoring, and wide age range have resulted in its widespread use for a large number of assessment purposes. Scores for each area allow you to evaluate areas of functioning, determine strengths and weaknesses, and specify training goals. The clinician can also use ABAS-II to evaluate those individuals with learning difficulties, Attention-Deficit/ Hyperactivity Disorder (ADHD), or other impairments related to motor, speech and language, hearing, and neuropsychological disorders. This test is also useful in determining how well the individual responds to daily demands from the environment. The ABAS-II can also be used to determine if adults can live independently