Enhancing the Child s Voice in Clinical Care and Research Bryce B. - - PowerPoint PPT Presentation

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

• ther 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

• f 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

Acknowledgments

University 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 any a little bad very bad never sometimes most of the time almost all the time

CTCAE Term Grade 0 Grade 1 Grade 2 Grade 3 Grade 4

Pain

No pain Mild pain Moderate pain; limiting activities

• f 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 Warehouse

Comparative 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

• utcomes
• 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.