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Biopsychosocial predictors of quality of life in paediatric patients with sickle cell disease

Biopsychosocial predictors of quality of life in paediatric patients with sickle cell disease
Biopsychosocial predictors of quality of life in paediatric patients with sickle cell disease

Sickle cell disease (SCD) refers to a group of inherited blood disorders with considerable morbidity that causes severe pain, reduces life expectancy, and requires significant self-management. Acute painful episodes are the hallmark of SCD, but persistent daily pain is also highly prevalent in this population. Characterising the impact and experience of SCD-related morbidity (i.e., sleep disruption, frequent emergency department visits, cognitive dysfunction) on health-related quality of life (HRQOL) requires multiple assessment methods to best capture the underlying mechanisms. To gain a greater understanding of the effect of common symptom categories on HRQOL and to determine potential pain coping targets, the present study investigated whether demographic, socioeconomic, sleepiness, pain burden, frequency of emergency department (ED) visits, and cognition predicted HRQOL in a paediatric sample of patients with SCD. Our study was a secondary analysis of baseline assessment data of children with SCD aged 8-15 years (n = 30) in the Prevention of Morbidity in Sickle Cell Anaemia Phase 2b (POMSb2) randomised controlled clinical trial of auto-adjusting continuous positive airways pressure. Patients completed cognitive testing (IQ, Processing Speed Index, Delis-Kaplan Executive Function Scale (DKEFS) Tower, Conner's Continuous Performance Test), sleepiness (Epworth Sleepiness Scale), and HRQOL (PedsQL Sickle Cell Module) at baseline. Patients reported pain burden (Sickle Cell Pain Burden Inventory-Youth) each month over 8 visits. Caregivers provided demographic information and reported their child's executive function (Behavioural Rating Inventory of Executive Function) at baseline. Data from our analysis demonstrated that demographic factors (i.e., age, gender, level of neighbourhood deprivation) and treatment variables (i.e., hydroxyurea use) did not independently predict HRQOL, and laboratory values (i.e., haemoglobin, haematocrit, mean oxygen saturation) were not significantly correlated with HRQOL (ps > 0.05). However, sleepiness, pain burden, ED visits, and executive dysfunction independently predicted HRQOL (R 2 = 0.66) with large effects (η2 = 0.16 to 0.32). These findings identify specific, measurable symptom categories that may serve as targets to improve HRQOL that are responsive to change. This knowledge will be useful for multimodal interventions for paediatric patients with SCD that include sleep management, pain coping strategies, and executive function training.

coping, emergency department visit, executive function, pain burden, sleep
1664-1078
681137
Hood, Anna M
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Kölbel, Melanie
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Stotesbury, Hanne
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Kawadler, Jamie
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Slee, April
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Inusa, Baba
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Pelidis, Maria
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Howard, Jo
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Chakravorty, Subarna
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Height, Sue
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Awogbade, Moji
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Kirkham, Fenella J
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Liossi, Christina
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Hood, Anna M
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Kölbel, Melanie
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Stotesbury, Hanne
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Kawadler, Jamie
7d035760-69ea-4b6c-8a7a-771b73453db8
Slee, April
993ac4ad-4ee4-437a-9f42-e27f8a7046d0
Inusa, Baba
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Pelidis, Maria
8dcd6334-d986-4097-b4a2-e46656001b39
Howard, Jo
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Chakravorty, Subarna
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Height, Sue
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Awogbade, Moji
f1a5cb60-e9d6-4f58-b50d-8f1a68024fba
Kirkham, Fenella J
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Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558

Hood, Anna M, Kölbel, Melanie, Stotesbury, Hanne, Kawadler, Jamie, Slee, April, Inusa, Baba, Pelidis, Maria, Howard, Jo, Chakravorty, Subarna, Height, Sue, Awogbade, Moji, Kirkham, Fenella J and Liossi, Christina (2021) Biopsychosocial predictors of quality of life in paediatric patients with sickle cell disease. Frontiers in Psychology, 12, 681137, [681137]. (doi:10.3389/fpsyg.2021.681137).

Record type: Article

Abstract

Sickle cell disease (SCD) refers to a group of inherited blood disorders with considerable morbidity that causes severe pain, reduces life expectancy, and requires significant self-management. Acute painful episodes are the hallmark of SCD, but persistent daily pain is also highly prevalent in this population. Characterising the impact and experience of SCD-related morbidity (i.e., sleep disruption, frequent emergency department visits, cognitive dysfunction) on health-related quality of life (HRQOL) requires multiple assessment methods to best capture the underlying mechanisms. To gain a greater understanding of the effect of common symptom categories on HRQOL and to determine potential pain coping targets, the present study investigated whether demographic, socioeconomic, sleepiness, pain burden, frequency of emergency department (ED) visits, and cognition predicted HRQOL in a paediatric sample of patients with SCD. Our study was a secondary analysis of baseline assessment data of children with SCD aged 8-15 years (n = 30) in the Prevention of Morbidity in Sickle Cell Anaemia Phase 2b (POMSb2) randomised controlled clinical trial of auto-adjusting continuous positive airways pressure. Patients completed cognitive testing (IQ, Processing Speed Index, Delis-Kaplan Executive Function Scale (DKEFS) Tower, Conner's Continuous Performance Test), sleepiness (Epworth Sleepiness Scale), and HRQOL (PedsQL Sickle Cell Module) at baseline. Patients reported pain burden (Sickle Cell Pain Burden Inventory-Youth) each month over 8 visits. Caregivers provided demographic information and reported their child's executive function (Behavioural Rating Inventory of Executive Function) at baseline. Data from our analysis demonstrated that demographic factors (i.e., age, gender, level of neighbourhood deprivation) and treatment variables (i.e., hydroxyurea use) did not independently predict HRQOL, and laboratory values (i.e., haemoglobin, haematocrit, mean oxygen saturation) were not significantly correlated with HRQOL (ps > 0.05). However, sleepiness, pain burden, ED visits, and executive dysfunction independently predicted HRQOL (R 2 = 0.66) with large effects (η2 = 0.16 to 0.32). These findings identify specific, measurable symptom categories that may serve as targets to improve HRQOL that are responsive to change. This knowledge will be useful for multimodal interventions for paediatric patients with SCD that include sleep management, pain coping strategies, and executive function training.

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Accepted/In Press date: 18 August 2021
Published date: 14 September 2021
Additional Information: Funding The National Institute for Health Research (UK; PB-PG-1112-29099) provided funding for patient recruitment. AH was supported by a grant from the National Heart, Lung, and Blood Institute, National Institutes of Health (1F32HL143915). MK and HS were funded by Action Medical Research (GN2509) and JK by Great Ormond Street Children's Charity (V4615). © 2021 Hood, Kölbel, Stotesbury, Kawadler, Slee, Inusa, Pelidis, Howard, Chakravorty, Height, Awogbade, Kirkham and Liossi.
Keywords: coping, emergency department visit, executive function, pain burden, sleep

Identifiers

Local EPrints ID: 453876
URI: http://eprints.soton.ac.uk/id/eprint/453876
ISSN: 1664-1078
PURE UUID: c8cf29f1-1856-412e-8778-52d160cca60e
ORCID for Fenella J Kirkham: ORCID iD orcid.org/0000-0002-2443-7958
ORCID for Christina Liossi: ORCID iD orcid.org/0000-0003-0627-6377

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Date deposited: 25 Jan 2022 17:42
Last modified: 23 Feb 2023 02:49

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Contributors

Author: Anna M Hood
Author: Melanie Kölbel
Author: Hanne Stotesbury
Author: Jamie Kawadler
Author: April Slee
Author: Baba Inusa
Author: Maria Pelidis
Author: Jo Howard
Author: Subarna Chakravorty
Author: Sue Height
Author: Moji Awogbade

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