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The psychosocial impact of leg ulcers in patients with sickle cell disease: I don’t want them to know my little secret

key information

source: PLoS On

year: 2017

authors: Umeh NI, Ajegba B, Buscetta AJ, Abdallah KE, Minniti CP, Bonham VL

summary/abstract:

BACKGROUND:
Sickle cell disease (SCD) impacts millions of individuals worldwide and more than 100,000 people in the United States. Leg ulcers are the most common cutaneous manifestation of SCD. The health status of individuals living with chronic leg ulcers is not only influenced by clinical manifestations such as pain duration and intensity, but also by psychosocial factors. Garnering insights into the psychosocial impact can provide a more holistic view of their influence on quality of life.

RESULTS:
Twenty participants with a mean age of 42.4 (SD ± 11.1years) were included in the study. Major themes identified included:1) pain (acute and chronic); 2) compromised physical function as demonstrated by decreased ability to walk, run, and play sports; 3) social isolation from activities either by others or self-induced as a means of avoiding certain emotions, such as embarrassment; 4) social relationships (family support and social network); 5) support and comfort through their religion or spirituality.

CONCLUSIONS:
SCD patients with leg ulcers expressed that they experience social isolation, intense and frequent ulcer pain, and difficulty in physical function. SCD-associated leg ulcers have been studied from a clinical approach, but the psychosocial factors investigated in this study informs how quality of life is impacted by the leg ulcers.

organization: National Institutes of Health, Bethesda, Maryland; Albany Medical College, Albany, New York; Michigan State University, College of Human Medicine, East Lansing, Michigan; Sickle Cell Center, Bronx, New York City, New York

DOI: 10.1371/journal.pone.0186270

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