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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
Consent-Form_version-4Apr2017.pdf application/pdf 70.7 KB 08/10/2017 07:14:AM
Copy-of-Clinical-and-Psychosocial-Data_QUALITATIVE20_VERSION-22Mar2017.xlsx application/vnd.openxmlformats-officedocument.spreadsheetml.sheet 30.1 KB 07/24/2017 10:26:AM
REDACTED_PT-50002.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 31.1 KB 07/02/2017 02:56:PM
REDACTED_PT-50003.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 39.4 KB 06/16/2017 12:30:PM
REDACTED_PT-50004.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 33.4 KB 06/29/2017 07:35:AM
REDACTED_PT-50005.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 41.1 KB 06/12/2017 09:33:AM
REDACTED_PT-50007.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 30 KB 06/21/2017 06:35:AM
REDACTED_PT-50011.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 29.5 KB 06/28/2017 01:03:PM
REDACTED_PT-50021.doc application/msword 55.5 KB 06/22/2017 02:26:PM
REDACTED_PT-50022.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 51.9 KB 07/02/2017 04:46:PM

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:  View help for 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:  View help for Subject Terms sickle cell disease; leg ulcers ; quality of life; qualitative study; self-esteem; stigma
Geographic Coverage:  View help for Geographic Coverage Participants from all over the United States were invited to participate in the study provided they met the inclusion and exclusion criteria.
Time Period(s):  View help for Time Period(s) 8/2015 – 5/2016
Collection Date(s):  View help for Collection Date(s) 8/2015 – 5/2016
Universe:  View help for Universe Persons aged 18 and over living with sickle cell disease and having an active or past occurrence of leg ulcers. 
Data Type(s):  View help for Data Type(s) clinical data; survey data

Methodology

Response Rate:  View help for Response Rate We conducted twenty semi-structured, one-on-one interviews with participants in the INSIGHTS Study (NCT02156102).  
Sampling:  View help for 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:  View help for Data Source An ongoing study provided the population for this sub-study as mentioned above. 
Collection Mode(s):  View help for Collection Mode(s) face-to-face interview; telephone interview
Scales:  View help for 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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