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

Abstract

BackgroundSickle 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.MethodsSemi-structured interviews were conducted with participants living with active SCD-associated leg ulcers or with a history of ulcers. Subjects were recruited from an ongoing study (INSIGHTS, Clin Trial.Gov NCT02156102) and consented to this qualitative phase of the study. Five areas were explored: leg ulcer pain, physical function, social-isolation, social relationships and religious support. Data was collected from 20 individuals during these interviews and a thematic analysis was performed and reported.ResultsTwenty 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.ConclusionsSCD 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.

Profile of Women With Leg Ulcers Due to Sickle Cell Disease

“…While women emphasize physical appearance (altered self-image), men are concerned about loss of muscle strength, such as weakness 12 . Women with SCD and leg ulcers experienced intense pain and feelings of shame and worthlessness, translated into suffering, low self-esteem and limitations in social life, which, in turn, can motivate isolation behavior 11 . These changes may justify the fact that the majority (70.6%) of the study participants did not have partners.…”

Atenção psicossocial às pessoas com comportamento suicida na perspectiva de usuários e profissionais de saúde

“…This prevents them from expressing what they feel, abstaining from the external environment and depleting more fruitful relationships that occur in complexus (11) , based on their own experiences. Introspection, with regard to locking yourself in as a way of dealing with the disease, was also evidenced in a research carried out with 20 patients due to complications of sickle cell anemia, coming from North America, Central America, and Africa (14) .…”

Iron Chelation with Transdermal Deferoxamine Accelerates Healing of Murine Sickle Cell Ulcers

“…31 Patients with SCD often develop SCUs, affecting physical function and the quality of life of the patient. 24,32 DFO is a highly effective and nontoxic iron chelator that has been routinely used to remove excessive iron from patients with hemochromatosis. 33,34 Due to its short half-life, it has been administered by subcutaneous or intravenous infusion, usually over 8-12 h and for 5-7 days/week.…”