Evaluating the impact of CSHCn satellite clinics

1. Gina Cook, Ph.D. David Bailey, DDS Jeff Hall, Ph.D. Doug Petersen, Ph.D., CCC-SLP Evaluating the impact of CSHCn satellite clinics

2. Project Overview • Children with Special Health Care Needs (CSHCN) Bureau • Eight multidisciplinary clinics • Held 3-6 times per year • Serves 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

3. Methods • Selected 4 of 8 sites • St. George, Moab, Ogden, and Richfield • Mailed questionnaires to 120 families • Satisfaction survey • Open-ended questions • Permission for follow-up phone call • ASD specific questionnaire (as applicable) • Follow-up phone calls

4. Procedure • Attend CSHCN clinic to better understand service delivery • Obtain IRB approval • Utah Department of Health • Utah State University • Identification of potential participants • Mail surveys • Conduct phone interviews • Analyze data • Present findings to URLEND and CSHCN clinic staff

5. 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 Disability • 3% Seizure Disorder

6. 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 needs • 3 on a 5 point scale (Some of the time)

7. 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)

8. 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

9. Methods • Follow-up Phone Interview • Positive 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?”

10. Results • Summary of phone interviews • Clinic 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!

11. 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.”

12. Discussion • Survey, Open-Ended Questions, Phone Interview: • Generally favorable reports • Family stress and depression were rated higher than severity of child’s disability • More information about treatment options • Less wait time • More frequent visits • Better follow-up

13. Questions?

14. URLEND program Evaluation

15. 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. • Change • Provide a timeline specific to trainees that outlines due dates for assignments • Provided timeline serves as a master calendar for due dates to eliminate discrepancies

16. Suggestion/Change • Access to clinical training opportunities for distance sites • Pros • Faculty and staff at the Utah sites were wonderful • Cons • Limited availability of sites outside of Utah • Increased time spent coordinating clinical hours by trainees outside of Utah • Change • Developing relationships with agencies for increased training opportunities outside of Utah • Exposure to challenges faced in other parts of the region (i.e., limited access to specialists, etc.)

17. 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. • Change • Increased expectation that all presenters come up with at least 3 questions or an activity that will produce more discussion.