Enhancing the Child’s Voice in

Clinical Care and Research

Bryce B. Reeve, Ph.D.

Associate Professor, Health Policy and Management

Member, Lineberger Comprehensive Cancer Center

bbreeve@email.unc.edu

No Disclosures

Standardized, routine assessment of

symptoms, functional status, needs and

other patient-centered outcomes for

children (and their caregivers) integrated

within the healthcare delivery system.

Are clinicians & caregivers a reliable source?

• Measuring fatigue in children (7 – 12 years) with cancer

undergoing chemotherapy.1

– Child and Parent: r = 0.35

– Child and Clinician: r = 0.16

• Pediatric bone marrow transplant patients.2

– Child and Clinicians: pain (r = .25), energy (r = .23), mental health (r

= .31)

• Children with brain cancers.3

– Child and Clinicians: pain (k = .52), emotion (k = .27)

• Children with CNS tumors.4

– Child and Clinicians: pain (k = .14), emotion (k = .14)

1Hockenberry MJ, et al. Three instruments to assess fatigue in children with cancer: the child, parent and staff perspectives. Journal

of Pain and Symptom Management. 2003;25(4):319-28.2Parsons SK, et al. Health-related quality of life in pediatric bone marrow transplant survivors: according to whom? International

Journal of Cancer Supplement. 1999;12:46-51.3Le Gales C, et al. Cross-cultural adaptation of a health status classification system in children with cancer. First results of the French

adaptation of the Health Utilities Index Marks 2 and 3. International Journal of Cancer Supplement . 1999;12:112-8.4Glaser AW, et al. Influence of proxy respondents and mode of administration on health status assessment following central nervous

system tumors in childhood. Quality of Life Research. 1997;6(1):43-53.

Implications?

• Not addressing the needs of the children.

• Underestimating the impact of the disease

and the treatments on children’s lives.

Dynamic, integrated, electronic system to

routinely screen children for symptoms (and other

key outcomes) and to provide real time feedback

to clinicians

EMR IT

PRO measures

Funded by the

US National Cancer Institute (NCI):

R01CA175759

& Alex’s Lemonade Stand Foundation

for Childhood Cancer

Pediatric

Design and Validation of a self-report measure of

symptom toxicities children (7-20 years) experience

while undergoing cancer treatment

University of North Carolina

Children’s National

Medical Center

St. Jude Children’s Research Hospital

Children’s Hospital Los

Angeles

DFCI / Boston Children’s Hospital

Palmetto Health

Hospital for Sick Children

http://unclineberger.org/pedpro

AcknowledgmentsUniversity of North Carolina

• Bryce Reeve, PhD

• Ethan Basch, MD

• Allison Deal, MS

• Stuart Gold, MD

• Jessica Lyons, MA

• Christa Martens, MPH

• Molly McFatrich, MPH

• Laura Pinheiro, MPH

• Clarence Potter

• Bahjat Qaqish, PhD

• Daniel Reuland, MD

Children’s National Medical Center, DC

•Pamela Hinds, PhD, RN

•Dorienda Britton

•Shanna Jacobs, MD

•Catriona Mowbray, PhD

•Mia Waldron, MSN-Ed, RN

•Jichuan Wang, PhD

Dana Farber Cancer Institute

• Jenny Mack, MD

• Josh Gagne, MA

• Sarah Taddei, BA

• Jen Wind, MA

Palmetto Health

• Janice Withycombe, PhD, RN

• Selena Lollar

• Jane Lukshis, MN, RN

St. Jude

• Justin Baker, MD

• Deborah Gibson, MA

• I-Chan Huang, PhD

• Meaghann Weaver, MD

Hospital for Sick Children

• Lillian Sung, MD, PhD

• Amanda Alli, BS

• Deborah Tomlinson, MN, RN

Children’s Hospital (LA)

•David Freyer, DO

•Diana Palma, BS

16 Core CTCAE terms

Abdominal Pain Cough Anxiety

Anorexia Pain Depression

Nausea Headache Fatigue

Vomiting Fever Insomnia

Constipation Peripheral sensory neuropathy

Diarrhea Mucositis oral

47 Other selected CTCAE terms

Abdominal distension Epistaxis Restlessness

Alopecia Fall Skin ulceration

Arthralgia Fecal incontinence Sneezing

Blurred vision Flashing lights Sore throat

Bruising Flatulence Suicidal Ideation

Chills General muscle weakness Tinnitus

Concentration impairment Hiccups Urinary frequency

Dizziness Hoarseness Urinary incontinence

Dry eye Hot flashes Urinary tract pain

Dry mouth Hyperhidrosis Urinary urgency

Dry skin Memory Impairment Urine discoloration

Dysgeusia Myalgia Urticaria

Dyspepsia Palpitations Voice alteration

Dysphagia Photosensitivity Watering eyes

Dyspnea Pruritus Wheezing

Edema limbs Rash acneiform

dysphagia = “problems with swallowing”

abdominal pain = “stomach pain”

nausea = “feel sick to your stomach”

fatigue = “feeling tired”

urinary incontinence = “wet yourself on accident”

Translate Medical Jargon to Child and Adolescent

Friendly Terms

1) How often did you have pain?

2) How bad was your pain?

3) How much did pain keep you from doing things you

usually do?

not at all some a lot a whole lot

did not

have anya little bad very bad

never sometimesmost of

the time

almost all

the time

CTCAE

TermGrade 0 Grade 1 Grade 2 Grade 3 Grade 4

Pain No pain Mild pain

Moderate pain;

limiting activities

of daily living

Severe pain;

limiting self care-

In the past

7 days,

e-PRO EMR Dashboard-summarize results

-automated alerts

-tx recommendations

-auto referrals

Clinicians-manage symptoms

-make referrals

-grade CTCAE

Data

WarehouseComparative

Effectiveness Research

Quality Improvement

IOM and National Cancer Policy Forum workshop

Washington, DC; Oct. 5-6, 2009

Needs, Gaps, Requirements

• Research

– Expand testing and use of patient-reported

(and proxy) tools across life span

– Build evidence base on value of PROs as a

process variable or predictor

– Integrate patient-reported data with clinical

data to inform guidelines

– Identify optimal ways to present data to

clinicians and patients (& caregivers)

– Lessons learned from existing systems

Needs, Gaps, Requirements

• System / Workforce

– Collaborate with EMR vendors and Office of

National Coordinator

– Educate clinicians and administrators on

value of patient-reported data

– Make PRO assessment a vital sign

• Policy

– Develop guidelines for care

– Establish quality standards

– Align PRO assessment and reimbursement

Enhancing the Child’s Voice…

• Children will be more actively involved in

their care

• Clinicians better manage their symptoms

• Children may more likely adhere to

treatment enhancing the odds for better

outcomes

• Researchers will better understand the

impact of cancer and treatment on the

children’s lives

Interviewer: Why do you think the questions were easy

to answer?

9-year old girl’s response: “Because it was mainly stuff

about myself and I know everything about myself.”

Let’s do this together.