Disease Knowledge, Illness Perceptions, and Quality of Life in Adolescents With Sickle Cell Disease: Is There a Link?

Abstract

Disease knowledge, illness perceptions, and quality of life (QOL) were examined in 150 adolescents (mean age = 16.1 years, SD = 1.9; 49.3% males) with sickle cell disease (SCD). Females had higher knowledge (P = .004), lower QOL (P = .02), and perceived their illness to be more unpredictable (P = .03). Those with more severe disease perceived their illness to be unpredictable with worse outcomes. Those with higher knowledge scores perceived their illness to be chronic, made more sense of their illness, and perceived greater personal and treatment control. Final hierarchical regression model showed that secondary education as compared to primary education level (P < .001) was positively correlated whereas disease severity (P < .001), perceived unpredictability (P = .024), and negative emotions (P < .001) were negatively correlated with QOL. Health practitioners should assess adolescents’ illness perceptions and encouraging continuing schooling and addressing emotional/psychological problems could improve their QOL.

Disease Self-Efficacy and Health-Related Quality of Life in Adolescents With Sickle Cell Disease

“…Findings suggest that AYAs' perceived ability to cope with SCD, notwithstanding disease status, significantly contributes to HRQOL. This is consistent with extant literature among AYA with SCD, suggesting that adolescents' perceptions of their illness directly inform HRQOL [20]. Further research is presently needed to explore the clinical utility of disease self-efficacy assessment, including the development of clinical cut-off scores for the SCSES.…”

Level of agreement between adolescents’ self‐assessment and parent proxy report of health‐related quality of life in adolescents with sickle cell disease

“…Girls’ functioning in almost all domains was consistently overestimated by their parents, whereas boys’ were thought to have lower functioning by their parents than the boys’ self‐reports. Jamaican adolescent females have been found to have higher knowledge and lower HRQOL than males and sociocultural factors might be implicated as a cause. In the Caribbean, girls and boys are reared with different attitudes and expectations from their families and communities, which may be implicated in many gender‐based disparities in medical and social outcomes.…”

“…All healthy adolescents with SCD, aged 13‐19 years, attending the Sickle Cell Unit in Kingston, Jamaica for a routine health maintenance visit were eligible to be included in the Know‐IT Study, the methods of which have been documented . Participants were recruited consecutively (total adolescents recruited: 150) over a 6‐month period that began in August 2013.…”

“…Also, HRQOL in Jamaican adolescents with SCD has been reported to be lower in females than in male patients. 30 Therefore, we aim to further examine whether agreement of parental report with their child's report varies by the sex of their child.…”

Compreendendo a relação de adolescentes, em cuidados paliativos, com o ciberespaço

“…Além disso, os adolescentes, em cuidados paliativos, também precisam conviver com o preconceito de outras pessoas (Silva, Vecchia, Braga, 2016;Asnani et al, 2017), com o medo e a angustia de saber que a doença representa um risco iminente em suas vidas (Hedén, et al, 2009;Walker, Gedaly-Duff et al, 2010;Hedén et al, 2013). Eles se veem como indivíduos dependentes de seus responsáveis e profissionais de saúde (Araújo et al, 2010;Linebarger, Ajayi, Jones, 2014).…”