Suen, C.G., Campbell, K., Stoddard, G., Carbone, P.S.(2020). Patient-Centered Outcomes in an Interdisciplinary Clinic for Complex Children with Autism. Journal of Developmental & Behavioral Pediatrics 42(3):182-190. doi:10.1097/dbp.0000000000000877 (Free full text)
Adapted Abstract
Background and Aims: HOME is a multi-age, primary care clinic providing different types of autism services using a medical home model. This study compares the views of caregivers of autistic children receiving care at the HOME clinic to the views of caregivers of autistic children nationwide.
Methods and Results: Questions from the 2016 NSCH, a survey previously sent to 1,151 families nationwide, were sent to 129 caregivers of members of the HOME clinic. The results showed that members of the HOME clinic had more opportunity for shared decision-making, more often received family-centered and coordinated care compared to the nationwide 2016 NSCH results. HOME members also had more access to behavioral treatment and adult transition services and less medical needs that were not met.
Conclusions and Implications: A primary care clinic providing different types of autism services using a medical home model like HOME can help meet the needs of autistic individuals from childhood to adulthood.
Findings
Compared to a national US sample, caregivers from HOME reported:
- More family-centered and more coordinated care for their children.
- More opportunities for shared decision making.
- Increased access to behavioral treatments.
- Increased access to adult transition services.
- Less financial burden and less medical needs that were not met.
Summary
The University of Utah has an outpatient clinic for persons with developmental disabilities and co-occurring health conditions. This outpatient clinic is part of the Neurobehavior Healthy Outcomes Medical Excellence (HOME) program. It provides primary care and other services in the same clinic. Many professionals from the care team may attend the healthcare visit. The visits at HOME are scheduled for 1 hour. HOME members also have access to specialist care within a large healthcare network. HOME is funded through capitated payments from Medicaid and private insurances. In previous studies, the HOME program has shown an increase in outpatient services with less time spent in the hospital for their members.
This study looks at how the caregivers of members of the HOME program evaluate their care in comparison to a nationwide sample of caregivers of children with autism. Data from the nationwide sample was collected in another study, but was used as a control group for the HOME model. The survey asked about Shared Decision-making, Family-centered care, Effective care coordination, Care within a medical home, and Transition discussions. There were also questions about medical needs that were not met.
Compared to the control group, caregivers of the HOME model reported more opportunities for Shared Decision-making, more Family-centered care, Effective care coordination, and Care within a medical home. Caregivers also reported more conversations about the transition of care with their provider and less medical needs that were not met than the nationwide sample. They also said they received more autism specific behavioral treatments and had more than 20 minutes with their doctor during their healthcare visit. These results were found after “adjusting” or considering age, sex, race/ethnicity, insurance, autism severity and intellectual disability.
Real-World Implications
A primary care clinic providing different types of autism services using a medical home model like HOME can help meet the needs of autistic individuals from childhood to adulthood.
Limitations
- There could be overlap in answers as caregivers in the home program may have answered questions for the nationwide survey as well as the survey sent out specifically based on their enrollment in the HOME program.
- There may be a participation bias for those in the HOME program being likely to participate in the study based on how satisfied they are with their care.
Text Slides
Click on the slides to advance. Click on the underlined words to read the definition.
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A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z
A
Accessible: When people with disabilities can easily use something. A setting or communication must work as well for people with disabilities as it does for everyone else.
Accessibility: What makes it easy for people with disabilities to obtain, understand or use.
Adolescence: Is from 10 to 19 years old. It is the time when a person is growing to become an adult.
Adolescent: A person who is 10 to 19 years old.
Adult Independence: An adult with disabilities is free to make their own day-to-day choices. For example: how to live, work, and take part in their communities.
Adult resources: Information and supports for adults.
Advocate (to): To speak up and make a case for what you need.
Affirmative Resources: Supports that are respectful and welcome a person the way they are.
Aggressive Behaviors: Words or actions that may hurt someone
Anxiety: Intense feelings of worry and fear.
ASAN: The Autistic Self-Advocacy Network is an organization run for and by autistic people.
Attention Deficit Hyperactivity Disorder (ADHD): A condition where someone:
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finds it hard to pay attention
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may act without thinking
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and needs to move a lot
Augmentative Alternative Communication (AAC): Ways, besides talking, that people show others what they want and need. This includes writing, pointing at pictures, typing, using signs, etc.
B
Behavioral Therapy: Therapy to change unhealthy or harmful ways people act.
Behavior Treatments: (See Behavior Therapy)
Bi-Polar Disorder: A disorder where someone’s mood changes between highs and lows.
Blood Draws: Inserting a needle into a vein to collect a blood sample for testing.
C
Capitated: Paying an amount of money based on how many patients are seen at a doctor’s office.
Caregiver: Someone who helps a person with everyday activities.
Case Management: Someone who helps make sure your services and supports work for you.
Community Programs: Activities or supports provided in your town in the same places as people without disabilities.
Community Resource Guide: A list of support services and resources in a local area.
D
Depression: Feelings of sadness or lack of interest in activities you once found enjoyable. It can change how much you sleep or eat.
Developmental disability services: Supports and programs for persons who are disabled before the age of 18.
Dietician: A healthcare professional who helps people eat healthy.
Dual Disability: Having more than one disability.
E
Executive functioning: How your brain works to focus, make a plan, remember and do more than one thing at the same time.
F
Funding: Money from an organization or government.
G
Gastro-intestinal: The many different parts of your body that food and liquid go through. For example: your mouth, stomach, or anus.
Government Policy-Makers: People in government who make rules and laws.
Guardianship: Guardianship is a legal word. Guardianship is when a court decides that a person cannot make their own decisions. The court then appoints someone else to make decisions for the person.
H
Healthcare professionals: People trained to provide healthcare. This includes doctors, nurses, therapists, etc.
Healthcare providers: People or places that provide healthcare. This includes doctors, nurses or hospitals.
Healthcare transition: When teenagers start making their own healthcare decisions as they become adults. They may change to a new doctor for adults.
Healthcare transition supports: Ways to make healthcare transition easier for teenagers and their parents.
Health Maintenance Organization (HMO). A group of doctors and hospitals who accept a set amount of money for services they provide.
Housing: A place where people live.
I
Insurance: A person pays a set amount of money each month to a company. Then, the company will help the person to pay for health care, like going to the hospital or getting medicine.
J
K
L
Legal Issues: These situations involve laws. A person might need help from a lawyer. In this study, legal issues were guardianship, wills and trusts
M
Mental health professionals: Trained people who help people with their mental health.
Medical Home: In a medical home, a team of medical providers manages your care. They listen to the patient to make sure they get the care they need. It is all about the patient.
Medical Providers: People or places that give medical care. This includes doctors, nurses or hospitals.
Mood Disorders:
N
O
Outcomes: Results.
P
Pap smear: A test where a swab is inserted into the vagina to check for abnormal cells.
Pediatric: Children under the age of 18.
Pediatricians: Doctors for children.
Policy: Rules people follow to know what to do. OR The ideas and beliefs used by a government or group when making decisions.
Post-secondary education: Opportunities to learn after high school. This can include trade programs, college, or any other learning opportunity.
Primary care: The medical office which is the main point of contact for a person’s medical care. It includes basic medical care like annual checkups and shots.
Preventative Healthcare: Healthcare that keeps you healthy, like regular check-ups and routine testing. Healthcare to prevent a condition from getting worse.
Privacy: There is a federal law that says a person decides who can look at and get a copy of your health information.
Q
R
Reactive Healthcare: Getting medical care after you are sick. Not getting healthcare, like a vaccine, to prevent an illness.
Rectal exam: Wearing gloves, doctor puts a finger into the patient’s rectum to feel some internal organs.
Resources- Adult: Information, services and supports just for adults.
S
Safer sex: Ways to prevent pregnancy and avoid sexually transmitted infections.
Screening: A test to find out if you have or are at risk for a health condition
Shared care: When a pediatric and an adult healthcare provider work together to care for a patient
Schizophrenia:
Seizures: A sudden electrical event in the brain
Self-care: Skills used to take care of yourself.
Sensory sensitivities: Being more aware of and sensitive to your environment. For example, more aware of and sensitive to smells, sounds, touch, brightness, quick moving.
Sexual Health and Wellbeing: the physical, emotional, and social aspects of expressing one’s sexuality.
Sexually transmitted infections (STI): Infections that you can get through sexual contact.
Shared Care: Medical care from a group of providers who work together to treat you
Social workers: A specialist who helps you meet your basic physical, mental and emotional health needs. Some do counseling. Some connect a person to services.
Special Educators: People who teach children with learning differences
Specialists: A healthcare provider who treats specific conditions, or works with a certain area of the body.
Supported decision making: Helping a person understand their choices and make their own decisions. Supported decision making is not like guardianship. With guardianship, the guardian makes decisions for the person.
Supporter or Support Person: Someone who may go with the person to appointments.
STI Testing: Medical tests to find out if you have a sexually transmitted infection.
T
Taking Blood Pressures: To measure how strong blood is moving from your heart through your your body
Telehealth or Telemedicine Visits: Meeting with your medical provider on a video call.
Transition Care Coordinator: The person who manages services for a patient moving into adult care.
Transition Services Program: Ways to help a child transition to adult services
Transportation: A way to get from one place to another.
U
V
Vocational programs: Support and training to help a person find and keep a job.
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W
Waiting Room Environment: How a waiting room is set up to make a person feel welcome and comfortable.