Adolescent and young adult survivors of brain tumors: Translating practice into research

and research into practice

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

APN Expectations

• Expert Clinicians• Educators• Consultants• Researchers

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

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

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???????

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.

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?

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

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?

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

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

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

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

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

Practice Turns into Research1. Assembling our team2. Writing the first page3. Writing the first page again and again!4. Putting together the research approach5. Getting feedback6. Submitting and getting feedback7. Revising and resubmitting

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).

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

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

Translating research into practice

• Tailoring interventions • Identifying high risk caregivers and

survivors• Feedback into “routine” practice

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)