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The Psychosocial Impact of Leg Ulcers in Sickle Cell Disease

Resource Type
Dataset : clinical data, survey data
  • BONHAM, VENCE (United States Department of Health and Human Services: National Human Genome Research Institute)
Publication Date
Free Keywords
sickle cell disease; leg ulcers; quality of life; qualitative study; self-esteem; stigma
  • Abstract

    Our study was conducted to examine the psychosocial impact of leg ulcers on individuals with sickle cell disease (SCD) by exploring the individual experiences in order to understand the physical function, stigma, and self-esteem associated with those with active, recurrent, or single-occurrence presentations of leg ulcers. To accomplish this objective, an in-depth, semi-structured interview methodology was employed. The intent was to afford participants the chance to expound upon existing questions and provide researchers with the opportunity to understand the complexity of participants’ experiences and quality of life.
  • Technical Information

    Response Rates: We conducted twenty semi-structured, one-on-one interviews with participants in the INSIGHTS Study (NCT02156102).
  • Technical Information

    Presence of Common Scales: Our questions were based off several Likert-type scales and modified to allow for open-ended responses. We asked questions that qualitatively measured the individuals’ quality of life and aligned with Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) measures and the Patient-Reported Outcomes Measurement Information System (PROMIS) measures.
Temporal Coverage
  • 2015-08-01 / 2016-05-31
    Time Period: Sat Aug 01 00:00:00 EDT 2015--Tue May 31 00:00:00 EDT 2016
  • 2015-08-01 / 2016-05-31
    Collection Date(s): Sat Aug 01 00:00:00 EDT 2015--Tue May 31 00:00:00 EDT 2016
Geographic Coverage
  • Participants from all over the United States were invited to participate in the study provided they met the inclusion and exclusion criteria.
Sampled Universe
Persons aged 18 and over living with sickle cell disease and having an active or past occurrence of leg ulcers. 
The population was pulled from a larger study;  the INSIGHTS Study (NCT02156102).  We conducted twenty semi-structured, one-on-one interviews with participants. 
Collection Mode
  • face-to-face interview~~telephone interview~~


Update Metadata: 2019-04-23 | Issue Number: 1 | Registration Date: 2019-04-23

BONHAM, VENCE (2017): The Psychosocial Impact of Leg Ulcers in Sickle Cell Disease. Version: 3. ICPSR - Interuniversity Consortium for Political and Social Research. Dataset.