Enhancing the Child s Voice in Clinical Care and Research

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1 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@ .unc.edu

2 Standardized, routine assessment of symptoms, functional status, needs and other patient-centered outcomes for children (and their caregivers) integrated within the healthcare delivery system.

3 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): 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: 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: 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): 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)

4 Implications? Not addressing the needs of the children. Underestimating the impact of the disease and the treatments on children s lives.

5 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

6 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): R01CA & Alex s Lemonade Stand Foundation for Childhood Cancer

7

8 University of North Carolina Hospital for Sick Children Children s National Medical Center Palmetto Health St. Jude Children s Research Hospital DFCI / Boston Children s Hospital Children s Hospital Los Angeles

9 16 Core CTCAE terms Abdominal Pain Diarrhea Nausea Anorexia Fatigue Pain Anxiety Fever Peripheral sensory neuropathy Constipation Headache Vomiting Cough Depression Insomnia 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

10 Translate Medical Jargon to Child and Adolescent Friendly Terms abdominal pain = stomach pain constipation = problems with hard poop dysphagia = problems with swallowing Urinary incontinence = wet yourself on accident nausea = feel sick to your stomach fatigue = feeling tired

11 CTCAE Term Grade 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, 1) How often did you have pain? never sometimes most of the time almost all the time 2) How bad was your pain? did not have any a little bad very bad 3) How much did pain keep you from doing things you usually do? not at all some a lot a whole lot

12 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

13 IOM and National Cancer Policy Forum workshop Washington, DC; Oct. 5-6, 2009

14 Needs, Gaps, Requirements Research Expand testing and use of patient-reported 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.

15 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

16 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.

17 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.

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