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 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) 1 Hockenberry 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. 2 Parsons 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. 3 Le 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. 4 Glaser 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 PRO measures EMR IT

Pediatric Design and Validation of a self-report measure of symptom toxicities children (7-20 years) experience while undergoing cancer treatment Funded by the US National Cancer Institute (NCI): R01CA175759 & Alex ’ s Lemonade Stand Foundation for Childhood Cancer

University of North Carolina Children’s Hospital for Sick National Children Medical Center St. Jude Children’s Palmetto Health Research Hospital Children’s DFCI / Boston Children’s Hospital Los Hospital Angeles http://unclineberger.org/pedpro

Acknowledgments Children ’ s National Medical Center, DC University of North Carolina • Pamela Hinds, PhD, RN • Bryce Reeve, PhD • Dorienda Britton • Ethan Basch, MD • Shanna Jacobs, MD • Allison Deal, MS • Catriona Mowbray, PhD • Stuart Gold, MD • • Mia Waldron, MSN-Ed, RN Jessica Lyons, MA • Jichuan Wang, PhD • Christa Martens, MPH • Molly McFatrich, MPH • Laura Pinheiro, MPH Dana Farber Cancer Institute • Clarence Potter • Jenny Mack, MD • Bahjat Qaqish, PhD • Josh Gagne, MA • Daniel Reuland, MD • Sarah Taddei, BA • Jen Wind, MA Children ’ s Hospital (LA) • David Freyer, DO Hospital for Sick Children • Diana Palma, BS • Lillian Sung, MD, PhD • Amanda Alli, BS • Deborah Tomlinson, MN, RN Palmetto Health • Janice Withycombe, PhD, RN St. Jude • Selena Lollar • Justin Baker, MD • Jane Lukshis, MN, RN • Deborah Gibson, MA • I-Chan Huang, PhD • Meaghann Weaver, MD

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

Translate Medical Jargon to Child and Adolescent Friendly Terms abdominal pain = “ stomach pain ” dysphagia = “ problems with swallowing ” urinary incontinence = “ wet yourself on accident ” nausea = “ feel sick to your stomach ” fatigue = “ feeling tired ”

CTCAE Grade 0 Grade 1 Grade 2 Grade 3 Grade 4 Term Moderate pain; Severe pain; Pain No pain Mild pain limiting activities - limiting self care of daily living In the past 7 days, 1) How often did you have pain ? most of almost all never sometimes the time the time 2) How bad was your pain ? did not a little bad very bad have any 3) How much did pain keep you from doing things you usually do? not at all some a lot a whole lot

e-PRO EMR Dashboard Clinicians -manage symptoms -summarize results -make referrals -automated alerts -grade CTCAE -tx recommendations -auto referrals Data Comparative Warehouse 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.