 Development of a Survey Instrument to Assess Family Participation in Follow-up Care in Pediatric Antimicrobial Home Infusion Therapy Alex Finlinson Katie Brown Tracy Golden Sarah Grant Emily Hoopes (Parent Consultant)

Pediatric Antimicrobial Home Infusion Therapy (HIT)  The administration of IV antibiotic/antimicrobial in the home is to treat an acute infection.  The administration of the antibiotic/antimicrobial is for a time-limited period and is not an ongoing infusion that may be part of the child's regular, daily care.  The person giving the IV treatment is the child's parent or other family member, not a medical professional providing a paid service

Statement of Problem  Missed follow-up visits for HIT may be cost inefficient and may contribute to a lower quality of care and poorer outcomes for families, including re-hospitalization.

Key Literature  HIT follow-up appointments will likely reduce the rate of re-hospitalization (Nguyen 2010; Gilchrist, Franklin & Patel, 2008).  Scheduling, clinic attributes, and transportation contribute to missed follow-up appointments (Daggey et al., 2010; Chariatte, Berchtold, Akré, Michaud & Suris, 2008 ).  Individual characteristics contribute to missed follow-up appointments (Daggey et al.; Chariatte et al.).  Families of children on HIT may have similar risk factors, but may have unique factors as well.

Objectives  Year I: Develop and beta test a survey instrument to gain insight into the perspective of parents regarding HIT and assess possible underlying causes for missed follow-up visits in pediatric, antimicrobial HIT ( ).  Year II: Deliver the survey to a random sample of parents participating in HIT and use results to make recommendations for process change ( ).

Methods  Procedures – survey development and testing  Participants - volunteer families with child participants of HIT  Analysis – synthesis of feedback to refine the survey

Results/Data Analysis  Parent Feedback  Qualtrics Survey Qualtrics Survey  Correlational Analysis:  Demographics  Satisfaction with HIT  Barriers to Follow-up  Family’s experience with HIT

Limitations  Small number of parents who provided feedback for beta testing  Lack of a pilot of the survey to collect and analyze a sample of data  Only provided in English which will limit participation by minority groups such as Spanish speakers

Emily Feedback  A web-based survey attempts to address obstacles of distance, time & availability for respondents.  Limitations of a web-based study:  May exclude respondents without web access at home (lower income, working parents).  Patients most likely to respond may also be more likely to attend follow-up appointments.  Respondents must be self-motivated to seek out study.  Many chronic patients are over-surveyed & question the value of this type of study.  Not possible to beta test across diagnoses (acute vs. chronic).

Sarah Feedback  Post PDC discussion with mentors  Include time for discussion immediately after each PDC  Positive and critical feedback in a timely manner to better understand the layers of complexity and subtlety in working with families –focusing on the interaction more than the content

Katie Feedback  Nutrition Therapy for children with special health care needs  Interdisciplinary teams in the school setting  Physical activity for persons with disabilities

Tracy Feedback  Identify the change/additions to the program that you are suggesting: clinic discussion group  Identify how it could/should be implemented  Discussion time during a seminar  Individual assignment with reaction to clinic visit  Identify why you think this would make you a more effective leader  Time to process what is/isn’t effective in clinic settings that we could bring into our own work settings as models

Alex Feedback  Encourage and build strong mentor and trainee relationships  Create expectations or guidelines of communication  Enhances experience, communication skills, goal setting, and networking

Special Thanks  To Emily Hoopes, volunteer families, and our project mentor Terry Pavia

References  Nguyen HH. Hospitalist to home: outpatient parenteral antimicrobial therapy at an academic center. Clin Infect Dis. 51 Suppl 2:S  Gilchrist M, Franklin BD, Patel JP. An outpatient parenteral antibiotic therapy (OPAT) map to identify risks associated with an OPAT service. J Antimicrob Chemother. 2008;62:  Daggy J, Lawley M, Willis D, Thayer D, Suelzer C, DeLaurentis PC, Turkcan A, Chakraborty S, Sands L. Using no-show modeling to improve clinic performance. Health Informatics Journal. 2010;16: 246.  Chariatte V, Berchtold A, Akré C, Michaud PA, Suris JC. Missed appointments in an outpatient clinic for adolescents, an approach to predict the risk of missing. Journal of Adolescent Health ; 38–45.