title: Concept Elicitation Within Patient-Powered Research Networks: A Feasibility Study in Chronic Lymphocytic Leukemia.
abstract: OBJECTIVE
  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).
  
  
  METHODS
  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.
  
  
  RESULTS
  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 (50%) were noted most frequently.
  
  
  CONCLUSIONS
  Survey results identified constitutional symptoms of CLL included in existing PRO instruments and the literature. Although the findings suggest that qualitative data obtained through social media applications can be potentially useful in supporting concept identification for newly developed PRO instruments, they also indicate that online approaches alone may not be sufficient to achieve efficient and exhaustive concept elicitation. Further research is needed to identify whether the results can support content validity in the same way as established qualitative research methods.
authors.affiliation: Health Research Associates, Inc., Seattle, WA. Electronic address: mccarrier@hrainc.net.
authors.forename: Kelly P
authors.initials: KP
authors.lastname: McCarrier
authors.affiliation: Janssen Global Services, LLC, Raritan, NJ.
authors.forename: Scott
authors.initials: S
authors.lastname: Bull
authors.affiliation: Janssen Global Services, LLC, Raritan, NJ.
authors.forename: Sarah
authors.initials: S
authors.lastname: Fleming
authors.affiliation: PatientsLikeMe Inc., Cambridge, MA.
authors.forename: Kristina
authors.initials: K
authors.lastname: Simacek
authors.affiliation: PatientsLikeMe Inc., Cambridge, MA.
authors.forename: Paul
authors.initials: P
authors.lastname: Wicks
authors.affiliation: Northwestern University, Chicago, IL.
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.affiliation: Janssen Global Services, LLC, Raritan, NJ.
authors.forename: Renee
authors.initials: R
authors.lastname: Pierson
mesh_terms: D000368:Aged; D001290:Attitude; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D015451:Leukemia, Lymphocytic, Chronic, B-Cell / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012107:Research Design; D061108:Social Media / Q000706:statistics & numerical data*; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014481:United States
keywords: content validity; patient-reported outcomes; qualitative methods; social media