Roadmap for Survivors:Transitioning from Active Cancer Treatment to Survivorship Care

Dava Szalda, MD MSHP and Lauren Daniel, PhDThe Children’s Hospital of Philadelphia

Abramson Cancer Center, University of Pennsylvania

Transitioning to Survivorship . . . .

Is a Success! • But can include . . .

• Separation Anxiety• Uncertainty• “Scanxiety”• Re-integration into school, work and

relationships

Outcomes of Cancer Survivors• Most survivors are doing well!

• Good quality of life• Achieving goals• Little distress• Relatively healthy

• Some may have problems and needs• Having a hard time in some life domains• Some distress• Some late effects/health problems• Unmet needs

• A few experience a lot of problems• Significant medical or psychological impairment

What are Late Effects Of Cancer Therapy?

Some survivors are at risk for long term physical and psychological effects of their

cancer and its therapy.

Late Effects are persistent and adverse changes directly related to:

Disease process Treatment process

Both

Examples of Late Effects of Cancer Therapy

Second cancers Psychosocial adjustment

Depression Anxiety

Endocrine (hormone) problems Neurologic Problems Fatigue/Sleep problems Pain Cognitive Dysfunction

“Chemo-brain”

Vital organ function

• Cardiac

• Renal

• Pulmonary

• Gastrointestinal Reproduction

• Fertility

• Premature menopause

• Urologic issues Chronic Pain

Who is at Risk?(Risk depends on many things)

• Age: Both current age and age when treated • General health & lifestyle• Family history• Genetics• Chance• Treatment

• More courses of treatment may increase risk• Type of medications and doses• Radiation: type and dose

What is Risk-Based Follow-up care?

Why is it important?• Monitor for recurrence of cancer• Surveillance for second cancers and late

effects• Early diagnosis and intervention

• Prevention• Tobacco use, physical activity, diet

• Counseling and targeted education

• Risk-Based = Individualized to your diagnosis and therapy

Who provides survivor care?

• Neurosurgery• Neuro-oncology• Radiation Oncology• Neurology• Rehabilitation Medicine• GI• Renal• Radiology• Physical Therapy

• Psychiatry/Psychology• Ophthalmology• ENT• Endocrine• Otorhinolaryngology• Cardiology• Internal Medicine• Pulmonary• Pain management

Who provides survivorship care?• A multidisciplinary team• A designated individual should

be responsible for coordinating survivorship care

• Care is a shared responsibility between patients, families and providers

Young Adult Survivors of Childhood and Adolescent Cancers

Transitioning to Survivorship can be tough . . . But it can be even tougher as a young adult.

Transitioning to Adulthood can be tough . . . But it can be even tougher as a cancer survivor.

Oncology Primary Care

Childhood(Pediatrics)

Adulthood(Adult-focused

healthcare)

AYA Cancer

Survivors

What can patients and families do to prevent or treat late effects of cancer therapy?

• Know your risks and resources• Children’s Oncology Group Long Term Follow-Up

Guidelines

• Follow up appointments• Ask about late effects clinics• Ask for a treatment summary & care plan from

your oncology team• Know your body• Follow a healthy lifestyle

Successful Survivorship

• Integrating the cancer event into your life• Achieve a sense of well-being & peace• Finding meaning in the illness

experience• Be an active participant in your health

and healthcare

Neurocognitive Late Effects

• Can vary widely based on:• Specific diagnosis• Treatment received• Age at diagnosis• Gender

• Important to consider changes overtime, especially at transitions in education

Addressing Neurocognitive Late Effects

• Frequent communication with your child’s teacher• Don’t wait until report cards arrive to take action!

• Have your child evaluated at school or through the hospital• Pros and cons of each option• If evaluation is through school must request in writing (sample letter)

• Know your legal rights• Philadelphia Education Law Center is a great resource for PA residents

• Think ahead• Be proactive and plan ahead for transitions and future challenges (i.e.,

transition to new school, SAT, college)

Observations that may lead to assessment:

• Trouble paying attention; may tend to “space out” • Difficulty understanding and remembering visual

information • Problems writing quickly or accurately • Trouble keeping up with new material • Difficulty with math problems, columns, or graphs • Problems planning and organizing • Trouble reading • Difficulty keeping up with homework/multiple assignments• Social and/or emotional difficulties/changes

Neurocognitive Assessment

• Help you better understand your child’s cognitive development after cancer diagnosis and treatment

• Help you advocate for your child in the school (IEPs or 504 Accommodation Plans)

• Help identify need for additional resources and/or intervention

• Help you plan for your child’s future

Supporting Academic Success

• 504 Plan• Eligibility: “physical or mental health disability that limits

one or more major life functions.”• For children who need accommodations to access their

education

• Individualized Education Plan (IEP)• A federal law called the Individuals with Disabilities

Education Act (IDEA) requires that public schools create an IEP for every child receiving special education services. Kids from age 3 through high school graduation or a maximum age of 22 (whichever comes first) may be eligible for an IEP.

Post Traumatic Stress and Growth

• Post traumatic stress• Rates are highest in mothers (44%), followed by

fathers (35%), much lower in adolescent survivors (18%) (Kazak et al., 2004)

• Post traumatic growth• Positive interpretation to find meaning in a

traumatic event

• The greater the stress the greater the growth (Barakat et al, 2005)

• Diagnosis after 5 leads to greater growth and benefit finding in adolescents (Barakat et al, 2005)

Posttraumatic Growth

• Acceptance• Empathy• Family• Appreciation• Positive Self-view• Reprioritization

Facilitating Growth

• Get involved in the cancer community • Encourage your child to talk about their

cancer when they are comfortable• Discuss the experience as evidence of your

child (and your family’s!) strength

• Support your child in sharing their story as they are comfortable

Thank youQuestions?