Concept Elicitation Within Patient-Powered Research Networks: A Feasibility Study in Chronic Lymphocytic Leukemia

Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research
Kelly P McCarrierRenee Pierson

Abstract

To explore the feasibility of using social media-based patient networks to gather qualitative data on patient-reported outcome (PRO) concepts relevant to chronic lymphocytic leukemia (CLL). Between August and November 2013, US-residing members of the PatientsLikeMe online CLL patient community completed open-ended web-based surveys designed to elicit descriptions of CLL symptoms, impacts, and treatment-related perceptions. Qualitative telephone follow-up interviews were conducted with a subsample of respondents. Survey responses and interview transcripts were coded for qualitative analysis using Atlas.ti. Fifty survey responses were included in the analyses. Participants were age 60.5 ± 6.9 years, 54% female, and 96% white. When surveyed, 20% were receiving current treatment, 16% were in remission, and 64% were treatment-naïve. Among respondents, 369 descriptions of CLL symptoms were coded. Fatigue-related symptoms were expressed most frequently, with 54% reporting "fatigue," "tiredness," or both in their responses. These concepts were followed by night sweats (38%), swollen lymph nodes (32%), and frequent infections (28%). Among impacts of CLL, worry and fear (66% of respondents), depressed feelings (52%), and work limitations...Continue Reading

References

Sep 1, 1993·Quality Assurance in Health Care : the Official Journal of the International Society for Quality Assurance in Health Care·A M Stalfelt, B Wadman
Sep 12, 2009·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Pennifer EricksonLaurie Burke
Oct 10, 2009·Nature Biotechnology·Catherine A BrownsteinJames A Heywood
Jun 15, 2010·Journal of Medical Internet Research·Paul WicksJames Heywood
Dec 19, 2012·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·David CellaSusan Yount
Feb 22, 2013·Orphanet Journal of Rare Diseases·Carl Rudolf BlankartTom Stargardt
Jul 16, 2013·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Paul WicksSara Ahmed
Feb 13, 2014·Journal of Medical Internet Research·Francisco Jose GrajalesGunther Eysenbach
Mar 26, 2014·Expert Review of Pharmacoeconomics & Outcomes Research·Danielle C LavalleeC Daniel Mullins
May 24, 2014·JAMA : the Journal of the American Medical Association·Griffin M WeberIsaac S Kohane
Jan 18, 2015·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Margaret RothmanElektra J Papadopoulos

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Citations

Jan 8, 2017·Thérapie·Sophie RavoireUNKNOWN les participants à la table ronde n(o) 6 de Giens XXXII
Nov 7, 2019·Journal of Sex & Marital Therapy·Ana N SantosLuísa Barros
Aug 11, 2018·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·Loretta A WilliamsCharles S Cleeland
Dec 1, 2018·Health and Quality of Life Outcomes·Amr MakadyUNKNOWN GetReal Workpackage 1
Apr 21, 2017·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Hilary WilsonKathy Wyrwich
Jun 10, 2018·JMIR Cancer·Rachel Rj KalfUNKNOWN IMI-GetReal Workpackage 1

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