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Pediatric Palliative Medicine/Respite Care: Survey Analysis of Current Perceived Efficacy for Services Utilized by Families of Patients at Ryan House

Research Domain: 
Community Partner: 
Iasis Healthcare
Student Researchers: 
Clare Moussallem, Jasmine Jimenez, and Samantha Debase
Faculty Mentor: 
Adrienne White

Ryan House, opened in March of 2010 in Phoenix, Arizona, is one of only two facilities in the United States that offers end-of-life care along with quality of life respite and palliative care to children with life-limiting conditions.  The organizational goal of Ryan House is to obtain assistance through insurance reimbursements for respite care in order to establish financial sustainability, lead a country wide change in pediatric palliative care, and replicate the Ryan House model.  Related literature reviews support the need for cost-effective services and the quantitative/qualitative analysis of a multidisciplinary team designed patient surveys.  Evaluations of the perceived efficacy of services accessed by families of patients reinforces the demand for pediatric patient-centered care.  The project scope entailed the creation, implementation, and analysis of a patient satisfaction survey questionnaire to serve as a baseline structural tool for future research on behalf of Ryan House.  Further research for Ryan House should aim at building upon the data gathered here based on perceived value then provide supplementary evidence to establish the true value of services to further reinforce the goal of receiving insurance reimbursements.  This indicates that in addition to further collection and analysis for patient satisfaction, impending research needs to focus on financial and safety analysis as well as an analysis of the patient outcomes for those who utilize Ryan House services versus those who do not.  This information will help insurance entities and potential partners determine the true value of their investment in Ryan House and the services that they provide.

A survey was constructed and administered to the families of 229 patients at Ryan House, and the patients were children who accessed specifically respite services since the opening of the facility. The survey was initially intended to be sent to all past and current families of patients who were provided services including respite and hospice care. However, due to the sensitive nature of the business for this facility, especially the hospice services, the survey was only administered to patients who received respite services. This meant that any family of a patient who utilized Ryan House solely for hospice services, who transitioned from respite to hospice care, or passed away did not receive the perceived patient satisfaction survey. Forty-six questions formulated for the survey regarded the details of the disease/diagnosis of the child, the clinical needs of the child, coordination of care services, quality of life for the child and their family, the programs at Ryan House, and demographic information. Of the 229 patients whose families were sent the questionnaire, 28 surveys were collected. The investigating team worked with a 12.23% response rate for the survey.

Studies report the definite need for respite services and the effectiveness of respite care as a coping strategy for parents of children with life limiting conditions. For the results of the survey, we were able to see that there are many children who are in need of various medical equipment and treatments. We were also able to disclose a variety of life-limiting conditions presented in these children. With the therapies provided and care from Ryan House staff, 82.2% of the caregivers’ stated that the quality of care was excellent. Surveys established effectiveness, satisfaction with level of care, benefits of services (e.g. palliative and respite care, child life therapies), and how service utilization improves quality of life for the child, siblings, and family. Limitations: Surveys were given to patients who only received respite care excluding hospice patients who utilize Ryan House services and may also receive respite care. The sample size was decreased, from approximately 550 families to 229, as a result of this exclusion. The limitation of time to return the surveys contributed as a factor, since only a week and a half was allotted for return time, and may be why the response rate was only 12.23%. Lastly, surveys were sent both electronically and through the mail. Due to the format of each platform, some questions were slightly changed. Conclusions: Ryan House provides cost effective health care that delivers state-of the art respite and palliative care, hospice, bereavement, sibling support and activities, and child life therapies for children with complex health needs. The results of the survey demonstrate that families who utilize Ryan House are satisfied with the care efforts and report improved quality of life for their child and family members. The survey also revealed areas in which Ryan House could make some improvements, such as staffing, since the children that they care for have complex conditions requiring 24-hour care. The research team recommends future monitoring and analysis of staffing at the facility to determine where, and if, more personnel is truly required. The ASU Capstone Team hopes that the facility can carry the results from the survey to assist in the establishment of reimbursements from payers for the purpose of financial sustainability in the future. Reimbursement for services provided at a facility like Ryan House will open doors for other organizations wanting to replicate their care model.