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 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 lens in 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 1.Assembling our team 2.Writing the first page 3.Writing the first page again and again! 4.Putting together the research approach 5.Getting feedback 6.Submitting and getting feedback 7.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)