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Development of practical outcome measures to account for individual differences and temporal changes in quality of life appraisal
Investigator (PI): Rapkin, Bruce
Performing Organization (PO): (Current): Albert Einstein College of Medicine, Department of Epidemiology and Population Health / (718) 430-3039
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2014
Final Year: 2019
Record Source/Award ID: PCORI/ME-1306-00781
Funding: Total Award Amount: $1,108,457
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: There are some aspects of health that can only be understood by asking the patient. Quality of life (QOL) questions like "how are you feeling?", "how much does it hurt?" or "how well are you getting around?" are fundamental. However, there is a problem. Different people may think about different things when answering questions like these: How am I feeling, when? How much does it hurt in comparison to what? Getting around by public transportation or walking? In conversation, we would naturally clarify these questions, but studies of QOL usually assume that everyone who gives the same answer means the same thing. We have found that this is not a valid assumption; clarification is needed to understand the thinking behind people's numerical answers. Almost 10 years ago, our team developed the QOL Appraisal Profile (QOL-AP) to understand how people think about their QOL. This interview asks about the personal goals, experiences, and standards of comparison that factor into the ways that people rate their QOL at a given point in time. Over a series of studies, this information has helped us account for differences in people's responses to illness and treatment, and has shed light on the ways that illness and treatment change people's perspectives on QOL. Despite this success, QOL-AP interviews are lengthy and complicated to administer and score. In this proposed study, we will look back over four large datasets on HIV/AIDS, multiple sclerosis, spinal surgery, and bladder cancer to determine aspects of appraisal that are the most important for understanding responses to QOL questions. Using this information, we will develop new measures that are more focused and concise. This research will be guided by a panel of stakeholders who use QOL assessment for research, clinical practice, or policy evaluation. We will test new measures in a sample of 120 bladder cancer patients drawn from two cancer centers. Anticipated impact: Portable measures of appraisal are needed to improve the validity and interpretability of QOL research. With our unique datasets, access to diverse patients, and stakeholder support, we are in a strong position to develop measures that are as informative as the QOL-AP but easier to use. New appraisal measures will play an important role in patient-centered outcomes research by bringing to light differences in the meaning of QOL that are usually ignored as measurement error. Appraisal assessment may be used in comparative effectiveness research to identify people whose responses to treatment are based upon different criteria. Patients and clinicians will also find new appraisal measures useful in clinical encounters. Bringing patients' goals and perspectives to the fore will promote better patient-provider communication and shared decision making. Understanding differences in patients' ways of thinking about QOL will permit better targeting of treatment strategies, patient education, and supportive care. More on this study: Rapkin BD, Schwartz CE. Distilling the essence of appraisal: a mixed methods study of people with multiple sclerosis. Qual Life Res. 2016 Apr;25(4):793-805. doi: 10.1007/s11136-015-1119-z. PubMed PMID: 26342930.
MeSH Terms:
  • Communication
  • Comparative Effectiveness Research
  • Databases, Factual
  • Decision Making
  • HIV Infections /psychology
  • /therapy
  • Humans
  • Language
  • Multiple Sclerosis /psychology
  • /therapy
  • * Outcome Assessment (Health Care)
  • Patient-Centered Care
  • Professional-Patient Relations
  • * Quality of Life
  • Spine /surgery
  • Time Factors
  • Urinary Bladder Neoplasms /psychology
  • /therapy
Country: United States
State: New York
Zip Code: 10467
UI: 20143593
Project Status: Completed
Record History: ('2017: Project extended to 2018.',) ('2018: Project extended to 2019.',)