Parents' perception of self-advocacy of children with myositis: an anonymous online survey

<p>Abstract</p> <p>Background</p> <p>Children with complex medical issues experience barriers to the transition of care from pediatric to adult providers. We sought to identify these barriers by elucidating the experiences of patients with idiopathic inflammatory muscle disorders.</p> <p>Methods</p> <p>We collected anonymous survey data using an online website. Patients and their families were solicited from the US and Canada through established clinics for children with idiopathic inflammatory muscle diseases as well as with the aid of a nonprofit organization for the benefit of such individuals. The parents of 45 older children/young adults suffering from idiopathic inflammatory muscle diseases were surveyed. As a basis of comparison, we similarly collected data from the parents of 207 younger children with inflammatory muscle diseases. The survey assessed transition of care issues confronting families of children and young adults with chronic juvenile myositis.</p> <p>Results</p> <p>Regardless of age of the patient, respondents were unlikely to have a designated health care provider assigned to aid in transition of care and were unlikely to be aware of a posted policy concerning transition of care at their pediatrician's office. Additionally, regardless of age, patients and their families were unlikely to have a written plan for moving to adult care.</p> <p>Conclusions</p> <p>We identified deficiencies in the health care experiences of families as pertain to knowledge, self-advocacy, policy, and vocational readiness. Moreover, as children with complex medical issues grow up, parents attribute less self-advocacy to their children's level of independence.</p

UK guideline on transition of adolescent and young persons with chronic digestive diseases from paediatric to adult care

The risks of poor transition include delayed and inappropriate transfer that can result in disengagement with healthcare. Structured transition care can improve control of chronic digestive diseases and long-term health-related outcomes. These are the first nationally developed guidelines on the transition of adolescent and young persons (AYP) with chronic digestive diseases from paediatric to adult care. They were commissioned by the Clinical Services and Standards Committee of the British Society of Gastroenterology under the auspices of the Adolescent and Young Persons (A&YP) Section. Electronic searches for English-language articles were performed with keywords relating to digestive system diseases and transition to adult care in the Medline (via Ovid), PsycInfo (via Ovid), Web of Science and CINAHL databases for studies published from 1980 to September 2014. The quality of evidence and grading of recommendations was appraised using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system. The limited number of studies in gastroenterology and hepatology required the addition of relevant studies from other chronic diseases to be included. These guidelines deal specifically with the transition of AYP living with a diagnosis of chronic digestive disease and/or liver disease from paediatric to adult healthcare under the following headings; 1. Patient populations involved in AYP transition 2. Risks of failing transition or poor transition 3. Models of AYP transition 4. Patient and carer/parent perspective in AYP transition 5. Surgical perspectiv

Characterizing the Unmet Mental Health Needs of Urban Adolescents

Background: Untreated mental illness among adolescents is a major public health concern. Nationwide, 80% of youth with mental illness are not receiving mental health services. Methods: Medical records (546 total) were abstracted for patients 16-22 years old with a diagnosis of serious mental illness/serious emotional disturbance (SMI/SED) seen between May 2014 and July 2015. A retrospective review of randomized (n=100) eligible charts was performed to abstract demographics, psychotropic medication use, history of mental health referrals, past hospitalization(s), and resource utilization. Based on the criteria outlined by the 1992 Alcohol, Drug Abuse and Mental Health Services Administration Reorganization Act, patients were categorized into mild, moderate, and severe categories. They were considered “mild” if they had a diagnosis of ADHD, ADD, anxiety, dysthymia, or substance use disorder only; “moderate” if they had a SMI/SED (e.g. bipolar affective disorder, major depression), or a “mild” diagnosis with a comorbid intellectual disability, and/or a previous psychiatric hospitalization; “severe” if they had multiple SMI/SEDs or a hospitalization within the past year. Descriptive statistics were performed. Results: Our patient sample had a median age of 18.9 years (SD ±1.87) with the majority self-identifying as African American (94%) and publically insured (86%). Thirty-four percent were found to have “mild” mental illness, 55% “moderate”, and 11% “severe”. Forty-two percent of the patients sampled had two or more mental illness comorbidities. Forty-eight percent were currently on psychotropic medication (“mild” 41%, “moderate” 51%, “severe” 55%, respectively) and 30% had a reported Individualized Education Program (IEP) or 504 plan (38%, 25%, 27%, respectively). Fourteen percent had been previously hospitalized for mental illness (0%,15%, 55%, respectively). While 83% of patients were offered referrals (82%, 85%, 73%, respectively), only 40% were being followed by a certified mental health provider (35%, 42%, 46%, respectively). Conclusion: In our population of largely minority, publicly insured youth, a large proportion of patients are not receiving needed mental health services. Studies have shown that untreated SMI/SED in adolescence leads to more intensive and costly treatment, and increases morbidity in adulthood. Our research demonstrates that despite primary care providers\u27 documented referrals, many adolescents with SMI/SED are not connected to ongoing mental healthcare. There are many barriers to accessing mental health services, including stigma and difficulty navigating a complex health system. Future efforts should focus on care coordination between primary care and mental health services to encourage adolescents with SMI/SED to meet their healthcare needs