Attitudes among healthcare providers and patients diagnosed with sickle cell disease

Sickle cell disease (SCD) is a chronic condition that affects thousands of people worldwide. The purpose of this study is to illustrate some of the challenges and perceptions of people diagnosed with SCD. The aims were to describe stressors, problematic symptoms, sources of support, and interactions with healthcare providers. This descriptive study, using mostly open-ended questions and conceptual analysis, included a sample of patients with SCD who were older than 18 years in ambulatory (57%) and inpatient (43%) clinics. Participants completed a 20-minute interview. Pain or SCD crisis were the chief reasons for hospitalization, and a wellness checkup was the chief reason people returned to an ambulatory clinic. Most (74%) were able to perform chores. Family was reported to cause the most stress in the home and also provide the most help. Pain is a pervasive aspect of life, limiting activities of daily living. Negative interactions with healthcare providers are common; therefore, advocacy is necessary for patients with SCD.

Assessment and prediction of pruritus in sickle cell disease patients: a preliminary study.

PURPOSE/OBJECTIVES: The purpose of this study was to better predict and assess pruritus in inpatients and outpatients with sickle cell disease. The aims were to describe the incidence and severity of pruritus using the visual analog scale (VAS) and the National Cancer Institute Common Toxicity Criteria (CTC) scale and to predict pruritus from common complications. DESIGN: This study was a prospective, cross-sectional design. SETTING: The study was conducted at a Midwestern National Cancer Institute hospital. SAMPLE: This prospective, cross-sectional design included patients with a diagnosis of sickle cell disease who were older than 18 years. METHODS: A demographic data form was used to collect biographical characteristics, and the CTC scale and VAS were used to evaluate pruritus. RESULTS: The participants (n = 56) were mostly women (62%) and outpatients (58%) and the mean number of complications was 1.9. The mean VAS score was 3.75, and the CTC score was 1.55. For inpatients, the mean VAS score was 5.17, and the CTC score was 1.65. For outpatients, the mean VAS score was 2.76, and CTC score was 1.56. The sensitivity and specificity for the VAS were 75% and 93%, respectively. The CTC scale was 56.2% and 100%, respectively. The difference in the area under the curve between the VAS and the CTC scale was 11.4% in favor of the VAS. Among complications (pulmonary hypertension, liver insufficiency, acute chest syndrome, renal insufficiency, iron overload, and chronic pain medication), chronic pain medication was the only significant predictor. CONCLUSIONS: Pruritus is common particularly in inpatients as well as outpatients. The VAS is a more sensitive and specific tool to measure pruritus. Chronic pain medication use is a predictor of pruritus. IMPLICATIONS: Clinicians must make patients aware that pruritus exists especially when pain medication is administered or prescribed.