Wendy Hobbie, MSN, CRNP, FAAN Janet A. Deatrick, PhD, FAAN

1. Adolescent and young adult survivors of brain tumors: Translating practice into research and research into practice Wendy Hobbie, MSN, CRNP, FAAN Janet A. Deatrick, PhD, FAAN

2. APN Expectations • Expert Clinicians • Educators • Consultants • Researchers

3. APN Reality • Direct patient care consumes the majority of time and effort • Education a natural outgrowth of our clinical practice • Consultations usually among our peers • Research is often a mystery- or the area we perceive we have the least expertise

4. Getting Started • Key to success: Mentor • Identify on your own • APN with a PhD in some of our practice areas • Office of Nursing Research and Evidenced Based Practice

5. Getting Started • Idea, clinical observation, or clinical dilemma • Literature review • Appraise the studies • Determine what should be your next step • Develop your research question………then what???????

6. Clinical Observations • Survivors of childhood brain tumors must cope with cognitive losses and often many physical issues. • As they age, the social and functional gap between the survivors and their peers widens. • Post high school, the survivors world becomes much smaller • The care giver demands placed on the family increase as the survivors fails to achieve developmental milestones. • Minimal resources available to this population • Families become financially and emotional drained as the reality of their child’s future becomes apparent.

7. Questions • How could we impact the quality of life of the survivor and their family members? • Are there critical points in time to intervene with patients and families to improve quality of life and performance status? • What would be the resources necessary to assist these families in caring for their aging young adult cancer survivor?

8. Reviewing the Literature • Physiologic effects of surviving a brain tumor were well documented • Psychosocial studies often excluded this population from most studies due to cognitive deficits • Survivors were different than most chronically ill young adults • “cured”: primary disease • “cost”: therapy related effects

9. Unanswered Questions about Brain Tumor Survivors • Gaps in understanding the survivors’ quality of life • Why are they less likely to marry, have full time jobs, and live outside their parents homes? • Gaps in understanding which caregivers are potentially vulnerable • What are the demands they experience and how competent do they feel?

10. Research Paradigm • Began to search for a paradigm that would fit the dilemma these patient and families were facing • Janet Deatrick was testing a tool that she developed with Kathleen Knafl regarding family management of childhood chronic illnesses

11. Developing a Collaborative Project • Janet Deatrick and I began to meet to discuss how the clinical questions could be examined using a “family” model • Began to develop and refine a hypothesis

12. Developing Hypothesis • Began looking at the problem through a family lensin this population (pilot done) • As we did the pilot, we discovered that the mothers seemed to be most impacted by the situation • Refocus thinking towards caregiving within a family context

13. Merging Resources • CHOP • Clinical expertise • Nursing • Psychology • Medicine-neuro-onc and survivorship • Patient population • Data Base and Statistical Support • Grant Office • Survivorship research infrastructure • PENN • Research expertise • Family management • Network • Grant Office • Rich student body • Students • Space • Project research infrastructure

14. Matching the Clinical Needs with Research Questions • Families are the primary care givers • Demand for care continues well into young adult years • Delayed or absent in meeting the developmental milestones • Family functioning • Anxiety • Caregiver demand

15. Practice Turns into Research • Assembling our team • Writing the first page • Writing the first page again and again! • Putting together the research approach • Getting feedback • Submitting and getting feedback • Revising and resubmitting

18. Research Questions • To examine the relationship among caregiver competence, caregiver demands, and caregiver, survivor, and household functioning. • To examine the survivors’ quality of life (physical, psychological, social relationships, and family/ community issues).

19. Current Progress • Enrollment-174 caregivers & 112 survivors • Dissemination • Posters & presentations (n=16) • Articles (n=2) • Funding-(NIH-$1 MM; ONS-2 grants @$10K each) • Future projects • Our team • Students’ work http://caregiverproject.securespsites.com

20. What we are finding • Caregiver demand/burden related to higher caregiver anxiety and perception of poorer survivor QOL • Caregivers’ have poorer mental and physical health

21. Translating research into practice • Tailoring interventions • Identifying high risk caregivers and survivors • Feedback into “routine” practice

22. Lessons Learned (so far!) • Maintain a nursing focus • Play to your strengths • Stretch yourselves • Importance of the team • Maintain a focus on the needs of the population(sensitive to the family needs)