Utility of paediatric quality of life and revised illness perception questionnaires in adolescents with sickle cell disease

Asnani, Monika; Barton-Gooden, Antoinette; Grindley, Marlyn; Knight‐Madden, Jennifer

doi:10.1080/17450128.2016.1139222

Cited by 7 publications

(10 citation statements)

References 16 publications

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“…The scale has been validated in our population also 52 and has robust psychometric properties. Cronbach’s αs range from .56 to .79 (except .34 for treatment control), and the causal items yielded a 3-factor structure explaining 52.1% of the total variance.…”

Section: Methodsmentioning

confidence: 95%

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

Asnani

Barton-Gooden

Grindley

et al. 2017

Global Pediatric Health

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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.

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Section: Methodsmentioning

confidence: 95%

“…The PedsQL SCD Module has been validated for use in our population of adolescents with SCD, 52 and the teen form has a Cronbach’s α of .96, with subscale reliabilities ranging from .70 to .93.…”

Section: Methodsmentioning

confidence: 99%

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

Asnani

Barton-Gooden

Grindley

et al. 2017

Global Pediatric Health

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“…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.…”

Section: Methodsmentioning

confidence: 99%

“…The interitem reliabilities for the total scale are 0.95 for adolescent report and 0.97 for parental report, with those for the domains ranging from 0.69 to 0.90 for patient self‐report and 0.83‐0.97 for parent‐proxy reports; it has, to date, shown responsiveness to changes in HRQOL in patients with painful crises, which offers further support for use of this instrument. The PedsQL‐SCD module instrument has been validated for Jamaican adolescents with SCD and shows good feasibility and reliability in this population …”

Section: Methodsmentioning

confidence: 99%

“…Multiple instruments have been developed and validated for use in chronic disease populations, and some of these instruments have been adopted and validated in populations with SCD including in Jamaica . Although self‐report measures of adolescents’ HRQOL should be considered the gold standard, there are instances where adolescents may be cognitively impaired, too ill or too fatigued to respond to HRQOL instruments .…”

Section: Introductionmentioning

confidence: 99%

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

Blake

Guthrie-Dixon²,

Grindley

et al. 2020

Pediatric Blood & Cancer

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Background We aim to assess the levels of agreement between parents, as proxies, and Jamaican adolescents living with sickle cell disease (SCD) in the reporting of the adolescent's quality of life. Procedures This cross‐sectional study assessed 102 patient/proxy pairs on quality of life of adolescents with SCD using the PedsQL‐SCD module. The level of agreement among pairs was assessed starting with broad group‐level approaches (the Wilcoxon signed‐rank test augmented by exploring percentage agreement) tapering to individual‐level approaches (intraclass correlation coefficients [ICCs] supplemented with Bland‐Altman plots). Results Most patients (76.5%) had homozygous SS disease (45.1% females; mean age 15.2 ± 1.5 years). Median total pediatric quality of life (PedsQL) scores were 79.1 (adolescent report) and 80.2 (parental report) (P = .60). There were 11.8% underestimation and 12.7% overestimation of overall health‐related quality of life (HRQOL) by parents. The highest perfect agreement existed on the “pain and hurt” domain for both male and female adolescents (85.7% and 84.4%, respectively). Overestimation was highest on the “social communication” domain for both male and female adolescents (19.6% and 34.8%, respectively). Parents exhibited good agreement on total PedsQL scores in male adolescents (ICC = 0.70), but moderate agreement (ICC = 0.43) in female adolescents. Generally, parents underestimated their male child's functioning and overestimated the female child's functioning on the various domains. Conclusions Parents and adolescents exhibit fair agreement in assessment of the adolescent's overall HRQOL but differ on subjective domains. Agreement varies by sex of the affected teen where girls’ HRQOL is generally overestimated by the parental proxy. Interventions to improve parents’ understanding of their children's psychosocial needs are needed.

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Health related quality of life in children with sickle cell disease: A systematic review and meta-analysis

et al. 2022

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Utility of paediatric quality of life and revised illness perception questionnaires in adolescents with sickle cell disease

Cited by 7 publications

References 16 publications

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

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

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

Health related quality of life in children with sickle cell disease: A systematic review and meta-analysis

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