EVALUATING THE IMPACT OF CSHCN SATELLITE

CLINICSGina Cook, Ph.D.

David Bailey, DDS

Jeff Hall, Ph.D.

Doug Petersen, Ph.D., CCC-SLP

Project Overview Children with Special Health Care Needs

(CSHCN) BureauEight multidisciplinary clinics

○ Held 3-6 times per yearServes approximately 2,400 children and their

families○ Assisting medical home in evaluation and long-term

management of children with developmental disabilities

Examine the impact of CSHCN clinics in terms of:Benefits to families

Timeliness of diagnosis

Improved access to services

Overall family satisfaction

Methods Selected 4 of 8 sites

St. George, Moab, Ogden, and Richfield Mailed questionnaires to 120 families

Satisfaction surveyOpen-ended questionsPermission for follow-up phone callASD specific questionnaire (as applicable)

Follow-up phone calls

Procedure Attend CSHCN clinic to better understand

service delivery Obtain IRB approval

Utah Department of HealthUtah State University

Identification of potential participants Mail surveys Conduct phone interviews Analyze data Present findings to URLEND and CSHCN clinic

staff

Survey Participants

120 mailed, 14 undeliverable, 30 completed Avg. age of children – 5 ½ years (18 m – 12 yr) 73% male, 27% female Primary Diagnosis – (2/3 also had a 2ndary)

59% ASD, 24% Other, 10% ADHD, 3% Intellectual Disability3% Seizure Disorder

Results Average Severity of Child’s Health Care Needs

5.4 on a 1 to 10 scale, 10 = most severe Average Level of Stress Caring for Child

6.0 on a 1 to 10 scale, 10 = extremely high stress Staff alleviates this stress was rated as

often to sometimes Average parent experiences depression or

anxiety related to child’s needs3 on a 5 point scale (Some of the time)

Results General Satisfaction Questionnaire (n = 30)

Intake process – Good (3.2)Communication – Good to Excellent (3.5)Clinic experience – Good (3.3)Billing and referrals – Good to Excellent (3.5)Timeliness of diagnosis – Good (3.2)Facility – Good to Excellent (3.2)

ASD Survey (n = 18)Provider knowledge of Autism – Good (3.3)Answers questions about Autism – Good (3.1)Information about interventions – Fair to Good (2.5)Provide explanations about tx – Fair to Good (2.7)Supports my decisions – Good (3.2)Staff follow through – Good (2.9)

Open-Ended Questions Liked most

Knowledgeable doctors/specialists (7) Friendly staff (5) 1 trip for many doctors, variety of specialists (8) They come to us, no more trips to SLC (4) Got answers that I didn’t get from Primary physician

Liked least Long waiting room time (4) Better follow-up of referrals (2) Still no diagnosis Biased Dr. (2) Waiting time to get an appointment was too long

Change Less waiting Quicker diagnosis Come more often (3) Act more quickly on referrals Support groups or parenting classes/more information

Methods

Follow-up Phone InterviewPositive outcomes

○ “Did the evaluation lead to something positive for your family?”

Importance of diagnosis○ “What did a diagnosis mean for your family?”

Delivery of diagnosis○ “Did you feel supported by the provider?”

Utility of clinic reports○ “Did the information in the reports make it to

your medical home?”

Results

Summary of phone interviewsClinic visit led to:

○ Perceived positive outcomes for the family.○ Better understanding of child○ Improved access to services (i.e., school,

financial, insurance)Delivery of diagnosis

○ Almost unanimous report of providers being professional, caring, supportive, and open to family questions!

Results Summary of phone interviews

Utility of Clinic Reports○ Most families received reports○ Most families did not know if PCP received reports○ Lack of follow-up with families from PCP

Additional Comments○ “I was really scared and intimidated when I got there. But

after I met the doctors, I was calmed and my son was comfortable, much more comfortable than even his regular doctor. It was really amazing.”

○ “…I felt like I did not receive any help so I was very very disappointed and hope in the future they can be more professional and answer more questions.”

Discussion

Survey, Open-Ended Questions, Phone Interview:Generally favorable reportsFamily stress and depression were rated

higher than severity of child’s disabilityMore information about treatment optionsLess wait timeMore frequent visitsBetter follow-up

QUESTIONS?

URLEND PROGRAM EVALUATION

Suggestion/Change Syllabus

Pros○ Provided detailed information about sessions○ Provided links to necessary readings

Cons○ Difficult to determine due dates for specific assignments○ Difficult to know exactly how many clinical hours are

required and how to record time on log.

ChangeProvide a timeline specific to trainees that outlines

due dates for assignments Provided timeline serves as a master calendar for due

dates to eliminate discrepancies

Suggestion/Change Access to clinical training opportunities for

distance sitesPros

○ Faculty and staff at the Utah sites were wonderfulCons

○ Limited availability of sites outside of Utah○ Increased time spent coordinating clinical hours by

trainees outside of Utah

ChangeDeveloping relationships with agencies for increased

training opportunities outside of UtahExposure to challenges faced in other parts of the

region (i.e., limited access to specialists, etc.)

Suggestion/Change Didactic Sessions

Pros○ Relevant topics ○ Timely information○ Learned more about being Family Centered and Evidence-

based Practices○ Good discussions/interactions among trainees & faculty

Cons○ Some didactic sessions had no or little trainee participation

required.

ChangeIncreased expectation that all presenters come up with at

least 3 questions or an activity that will produce more discussion.