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25-11-2017 | Editorial

Introduction to special section: measuring what matters

Auteurs: Steven I. Blum, Sara Ahmed, Emuella Flood, Frans J. Oort, Carolyn E. Schwartz

Gepubliceerd in: Quality of Life Research | Uitgave 1/2018

Excerpt

In 2015, ISOQOL President, Claire Snyder, PhD, and the ISOQOL Board introduced two key themes for ISOQOL to focus on over the coming years: Measuring What Matters (e.g., what outcomes should we measure) and Making Measurement Meaningful (e.g., what do the scores mean) [1]. An additional topic, Making Sense of Methods (e.g., how do you interpret psychometric data), also subsequently emerged [2]. To advance the dialog on Measuring What Matters, ISOQOL held its inaugural Measuring What Matters educational symposium in July 2016. Measuring What Matters is more than just a catchy slogan or catch phrase. It is a strategic imperative and a call for action for researchers to develop patient-reported outcomes (PRO) and other instruments which assess meaningful health outcomes—but for whom and for what purpose? When selecting an instrument, we need to also consider the context in which the measure will be used. …

volgende artikel Beyond study participants: a framework for engaging patients in the selection or development of clinical outcome assessments for evaluating the benefits of treatment in medical product development

Snyder, C. (2015). President’s message. Quality of Life Quarterly, 21(4), 1. Accessed at http://www.isoqol.org/UserFiles/FALL2015NEWSLETTER-FINAL.pdf.

Snyder, C. (2016). President’s message. Quality of Life Quarterly, 22(2), 1. Accessed at http://www.isoqol.org/UserFiles/QOL%20Quarterly/2016SpringNewsletter.pdf.

FDA: Guidance for Industry. (2009). Patient-reported outcome measures: Use in medical product development to support labeling claims. https://www.fda.gov/downloads/drugs/guidances/ucm193282.pdf. Accessed 1 June 2017.

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EMA: Appendix 2 to the guideline on the evaluation of anticancer medicinal products in man—the use of patient-reported outcome (PRO) measures in oncology studies. http://www.ema.europa.eu/ema/index.jsp?curl=pages/regulation/general/general_content_001127.jsp&mid=WC0b01ac0580034cf3. Accessed 1 June 2017.

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Wilson, H., Dashiell-Aje, E., Anatchkova, M., Coyne, K., Hareendran, A., Leidy, N. K., McHorney, C. A., & Wyrwich, K. (2017). Beyond study participants: A framework for engaging patients in the selection or development of clinical outcome assessments for evaluating the benefits of treatment in medical product development. Quality of Life Research. https://doi.org/10.1007/s11136-017-1577-6.PubMedCentral

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Forsyth, L., Heckert, A., Margolis, M. K., Schrandt, S., & Frank, L. (2017). Methods and impact of engagement in research, from theory to practice and back again: Early findings from the patient-centered outcomes research institute. Quality of Life Research. https://doi.org/10.1007/s11136-017-1581-x.

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Coon, C. D., & Cook, K. F. Moving from significance to real world meaning: Methods for interpreting change in clinical outcome assessment scores. Quality of Life Research (2017). https://doi.org/10.1007/s11136-017-1616-3.

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Truitt, A. R., Monsell, S. E., Avins, A. L., Nerenz, D. R., Lawrence, S. O., Bauer, Z., Comstock, B. A., Edwards, T. C., Patrick, D. L., Jarvik, J. G., & Lavallee, D. C. (2017). Prioritizing research topics: A comparison of crowdsourcing and patient registry. Quality of Life Research. https://doi.org/10.1007/s11136-017-1566-9.PubMed

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Wasson, J. H., Soloway, L., Moore, L. G., Labrec, P., & Ho, L. (2017). Development of a care guidance index based on what matters to patients. Quality of Life Research. https://doi.org/10.1007/s11136-017-1573-x.PubMed

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King, M. T., Stockler, M., O’Connell, R., Buizen, L., Joly, F., Lanceley, A., Hilpert, F., Okamoto, A., Aotani, E., Bryce, J., Donnellan, P., Oza, A., Avall-Lundqvist, E., Berek, J. S., Feeney, A., Berton-Rigaud, D., Sehouli, J., & Friedlander, M. (2017). Measuring what matter MOST: Validation of the measure of ovarian symptoms and treatment, a patient-reported outcome measure of symptom burden and impact of chemotherapy in recurrent ovarian cancer (ROC). Quality of Life Research.

Titel: Introduction to special section: measuring what matters
Auteurs: Steven I. Blum
Sara Ahmed
Emuella Flood
Frans J. Oort
Carolyn E. Schwartz
Publicatiedatum: 25-11-2017
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 1/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-017-1743-x

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