Pain in Children and Adolescents With Sickle Cell Disease: Multidimensional Assessment

Abstract

Background: Patients with sickle cell disease (SCD) suffer from recurrent painful vaso-occlusive episodes with a significant impact on their quality of life. The aim of this study was to perform a multidimensional assessment of pain in Portuguese children and adolescents with SCD. Methods: Subjects were children and adolescents and their parents recruited from the outpatient pediatric hematology clinic in a Portuguese Hospital. Pain frequency and a broader multidimensional evaluation was performed using the Pediatric Pain Questionnaire (PedsQL) (that includes Visual Analog Scales, color indicators, qualitative descriptors of pain [open question] and body diagram) and a structured questionnaire (PQ2), that included a term list of the Adolescent Pediatric Pain Tool, among other questions. Results: Included 60 children and adolescents (36 boys and 24 girls) with a mean age of 11±4.0 years (range, 5 to 18). The majority of children (83.1%) reported no present pain and 57.6% reported pain last month, with several degrees of pain intensity. Abdomen, thorax, and limbs were the most frequent localizations. Red was the color most chosen to describe “severe pain,” whereas blue and green were more used to describe “no pain.” The number of pain descriptors is different using an open-ended question (2.1±1.5) than a given list of terms (15.3±8.1). The most frequent terms used in the open question were “strong/very strong,” “hurts a lot,” “makes cry,” and “horrible.” Parents used similar pain descriptors. “Makes cry,” “horrible,” “tiring,” “unbearable,” and “uncomfortable” were the most frequent terms chosen in the PQ2. Pain interfered variably with daily activities for most of the patients. Conclusion: Pain experienced in SCD has a broad range of intensity levels, localization, and frequency. There are a number of pain descriptors and socio-emotional factors related to the pain experience. A comprehensive multidimensional assessment that includes both child’s and parents’ perspective seem to be the most adequate strategy to assess pain.

Poverty and the wellbeing of children with sickle cell disease: The mediating role of parenting stress

“…Pertaining to the PedsQL total score, clinically meaningful interpretations indicate that HRQOL in our sample was poor based on results from the pain subscales. 33 Pain intensity and frequency have been linked to several complications, such as psychological distress, social isolation, and lower HRQOL in individuals with SCD, 34,35 which may explain the decreased HRQOL scores in our sample. Future research should explore the evolution of acute and chronic pain experiences in youth with SCD in the context of phenotypes, age, and other social determinants of health.…”

Health-Related Quality of Life Assessments by Children and Adolescents with Sickle Cell Disease and Their Parents in Portugal

“…Pain frequency (using a Likert scale) was measured by children and parents. A multidimensional evaluation of pain in the SCD children and adolescents was done simultaneously [ 18 ].…”