ABSTRACT
ISSUES AND PURPOSE: Pain is the most frequent and important problem for children with sickle cell disease (SCD), but it has been undertreated and understudied. A multidisciplinary group of healthcare providers, academics, and people with SCD and their families met to (1) examine the pain of vaso-occlusive events (VOE) in children and adults with SCD and (2) reach consensus about necessary improvements in care. CONCLUSIONS: Accurate assessment of pain is at the crux of effective care for children with VOE. This requires a trusting interactive relationship among patient, family, and healthcare team. Comprehensive pain assessment is a lifelong process in need of continued updating. PRACTICE IMPLICATIONS: Children with SCD seek treatment from nurses in many settings. Traditional care has been frustrating to both families and care providers. Children and adolescents with SCD pain would benefit from nursing care that considers patients' perspectives about pain and comfort as key determinants for treatment. A unified approach to pain assessment may be a significant factor in improving pain control.
Subject(s)
Anemia, Sickle Cell/physiopathology , Pain Measurement/methods , Pain/physiopathology , Pain/psychology , Adolescent , Anemia, Sickle Cell/nursing , Child , Child, Preschool , Decision Trees , Humans , Practice Guidelines as Topic , Professional-Patient RelationsABSTRACT
OBJECTIVES: To compare laboratory and programmatic issues in neonatal hemoglobin screening in two systems using either liquid cord blood or heel puncture blood dried on filter paper (DB) to determine the accuracy of hemoglobin phenotype; the collection rate of cord blood versus DB; and the types of and reasons for errors. METHODS: Cord blood samples for 6904 newborns were analyzed by electrophoresis in a large hospital laboratory. DB samples on the same cohort were analyzed by isoelectric focusing in a state public health laboratory. RESULTS: Interlaboratory concordance was 99.4% for 6904 matched specimen pairs, which included 27 disease and 596 carrier phenotypes. In 42 pairs, discordances for potential disease phenotypes occurred with cord blood samples. Errors involving carrier phenotypes occurred in 15 cord blood samples and 14 DB samples. Inconclusive results requiring repeat testing occurred more often in the cord blood testing system (92) than in the DB system (23). Clerical transcriptions and limitations of the techniques accounted for most laboratory errors. Noncompliance in sample collection occurred more frequently with cord blood (181) than DB (86). CONCLUSIONS: Both systems are subject to errors, but are equally reliable for neonatal hemoglobinopathy screening.
Subject(s)
Blood Specimen Collection/methods , Hemoglobinopathies/diagnosis , Hemoglobins/analysis , Blood Protein Electrophoresis , Chromatography, High Pressure Liquid , Electrophoresis, Cellulose Acetate , False Negative Reactions , False Positive Reactions , Fetal Blood , Hemoglobin A/analysis , Hemoglobins, Abnormal/analysis , Humans , Infant, Newborn , Isoelectric Focusing , PaperABSTRACT
The Chronic Illness Problem Inventory (CIPI) was used to assess level of psychosocial functioning in 89 patients with sickle cell disease. The results indicated that sickle cell patients have significant psychosocial distress in the areas of employment and finances, sleeping and eating, and performance of normal daily activities. Fear and anxiety regarding body deterioration, and lack of assertiveness in social relationships were also found. These findings suggest that depression may be a common problem among sickle cell patients. Treatment alternatives that address these areas are reviewed.
