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The Psychosocial Impact of Leg Ulcers in Sickle Cell Disease

Principal Investigator(s): View help for Principal Investigator(s) VENCE BONHAM, United States Department of Health and Human Services: National Human Genome Research Institute

Version: View help for Version V1

Name	File Type	Size	Last Modified
The Psychosocial Impact of Leg Ulcers in Sickle Cell Disease		0

Project Citation:

BONHAM, VENCE. The Psychosocial Impact of Leg Ulcers in Sickle Cell Disease. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2017-08-10. https://doi.org/10.3886/E100862V1

Project Description

Summary:

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.

Scope of Project

Subject Terms: sickle cell disease; leg ulcers ; quality of life; qualitative study; self-esteem; stigma

Geographic Coverage: Participants from all over the United States were invited to participate in the study provided they met the inclusion and exclusion criteria.

Universe: Persons aged 18 and over living with sickle cell disease and having an active or past occurrence of leg ulcers.

Data Type(s): clinical data; survey data

Methodology

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

Sampling: The population was pulled from a larger study; the INSIGHTS Study (NCT02156102). We conducted twenty semi-structured, one-on-one interviews with participants.

Data Source: An ongoing study provided the population for this sub-study as mentioned above.

Collection Mode(s): face-to-face interview; telephone interview

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.

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Published Versions

V3 [2017-08-10]

V2 [2017-08-10]

V1 [2017-08-10]

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