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Unanswered HRQOL and Survivorship Questions

Unanswered HRQOL and Survivorship Questions . Lari Wenzel Michael Friedlander Vivian VonGruenigen. Why are Patient-Reported Outcomes Important in Ovarian Cancer?. Ovarian cancer treatments should be evaluated for ability to improve patient functioning and reduce symptoms

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Unanswered HRQOL and Survivorship Questions

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  1. Unanswered HRQOL and Survivorship Questions Lari Wenzel Michael Friedlander Vivian VonGruenigen

  2. Why are Patient-Reported Outcomes Important in Ovarian Cancer? • Ovarian cancer treatments should be evaluated for ability to improve patient functioning and reduce symptoms • Treatment-related side effects must also be assessed • Symptoms and function are best measured by asking patients directly • Clinical trial and intervention development

  3. Choosing a PRO Measure 1.Reliability: Extent to which instrument is free of measurement error • Internal consistency • Test-retest 2.Responsiveness: Ability of instrument to detect change over time 3.Validity: Whether the instrument is measuring what it intends to measure • Face validity • Construct validity

  4. Well-established, Reliable & Valid Instruments • EORTC-QLQ-C30/Ov 28 • (Aaronson et al, 1993; Greimel et al, 2003) • FACT-G/O • (Cella et al, 1993; Basen-Engquist et al, 2001) • Core items & items specific to symptoms and concerns of ovarian cancer patients

  5. Movement toward Symptom Indices • To identify patients’ highest priority symptoms for advanced ovarian cancer • Compare priority ratings with those obtained from clinicians • Construct brief symptom indexes based on their combined input

  6. Most Important Symptom Targets, Nurses/Physicians Fatigue Vomiting Pain Nausea Stomach swelling Worry condition will get worse Content with present QOL Stomach cramps (Cella, Paul, et al. 2003) Most Distressing Symptoms, Women with Recurrent Ovarian Cancer Lack of energy Worrying Pain Feeling bloated Difficulty sleeping Muscle/joint aches and pains Feeling nervous Constipation Clothes feeling too tight Problems with sexual interest or activity (See, Basen-Engquist, Kavanagh, et al. 2004) Symptom Indices

  7. Inserting new items Published Expert Symptom Indices (2003) RECONCI L IAT ION Final Symptom Indices (2007): Disease-Related Symptoms (DRS), Treatment-Side Effects (TSE), & Function/Well-Being (F/WB) Subscales FACT-G and Disease-Specific Subscales Disease-Specific Surveys Experts Investigators prepare surveys Patients New Patient-Centered Symptom Indices Subtracting items not directly disease-related Constructing Symptom Indexes From Original FACT Measures New indexes include patient qualitative input, importance ranking, and weighting emphasis

  8. “Sharpening” Measurement Focus NCCN/FACT disease-specific questionnaires have been transformed into brief, patient-centered symptom indexes for advanced ovarian cancer • Reflects the highest priorities of people affected by advanced ovarian cancer • Reflects the perspective of experienced providers • Can be used as stand-alone measure in oncology research and practice

  9. FACT-O Symptom Index (FOSI) • Designed to measure symptoms in advanced ovarian cancer • FOSI-18 • Disease-related symptoms- Physical • Disease-related symptoms- Emotional • Treatment side effects • Function and Well-Being

  10. New Directions in HRQOL Measurement • Real time assessment methods • Computer adaptive testing, item banking • PROMIS Initiative: Evidence-based conceptual framework, common patient endpoints, large and well-tested repository of questions to measure most common and important symptoms and functional concepts • http://www.nihPROMIS.org/

  11. PROMIS Goal: Improve assessment of self-reported symptoms and other health-related quality of life domains across many chronic diseases. Core domains: pain, fatigue, depression, anxiety, anger, physical function, social function, and overall general health Additional domains: sleep/wake function, cognitive function, sex functioning, illness impact Pediatric PROMIS

  12. PROMIS: Developing Instruments for Use in Clinical Research and Practice Publicly available, adaptable and sustainable Internet-based system that will provide: Item Banks Short Forms Individually “tailored” questionnaires (i.e., Computerized-Adaptive Testing, CAT) Advantages Reduced response burden Increased precision to detect group differences Compare or combine results from multiple studies Symptom and Quality of Life information can be electronically linked with patient’s medical records to enhance decision making.

  13.           0 50 100 Physical Functioning • Are you able to run five miles? • Are you able to run or jog for two miles? • Are you able to walk a block on flat ground? • Are you able to walk from one room to another? • Are you able to stand without losing your balance for 1 minute? • Are you able to get in and out of bed?

  14. Item Library/Bank Pick-a-PRO Build-a-PRO CAT

  15. PROMIS Version 1.0 Banks

  16. Conclusions Great progress has been made in HRQOL ovarian cancer measurement Sharpening focus of symptom indices Adds to clinical decision-making, intervention measurement to preserve/improve QOL PROMIS will add to clinical trial and survivorship research Goal: Standardized measures will enhance our ability to evaluate the effectiveness of interventions and treatments

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