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...
| Main Authors: | , , , , , , , , , , , , |
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Frontiers Media S.A.
2021-09-01
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| Series: | Frontiers in Psychology |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fpsyg.2021.681137/full |
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| author | Anna M. Hood Melanie Kölbel Hanne Stotesbury Jamie Kawadler April Slee Baba Inusa Maria Pelidis Jo Howard Jo Howard Subarna Chakravorty Sue Height Moji Awogbade Fenella J. Kirkham Fenella J. Kirkham Fenella J. Kirkham Fenella J. Kirkham Christina Liossi Christina Liossi |
| author_facet | Anna M. Hood Melanie Kölbel Hanne Stotesbury Jamie Kawadler April Slee Baba Inusa Maria Pelidis Jo Howard Jo Howard Subarna Chakravorty Sue Height Moji Awogbade Fenella J. Kirkham Fenella J. Kirkham Fenella J. Kirkham Fenella J. Kirkham Christina Liossi Christina Liossi |
| author_sort | Anna M. Hood |
| collection | DOAJ |
| description | 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 (R2 = 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. |
| first_indexed | 2024-12-16T11:45:25Z |
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| id | doaj.art-6740f1f1c25345b3865befa63e4c7033 |
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| issn | 1664-1078 |
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| last_indexed | 2024-12-16T11:45:25Z |
| publishDate | 2021-09-01 |
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| spelling | doaj.art-6740f1f1c25345b3865befa63e4c70332022-12-21T22:32:50ZengFrontiers Media S.A.Frontiers in Psychology1664-10782021-09-011210.3389/fpsyg.2021.681137681137Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell DiseaseAnna M. Hood0Melanie Kölbel1Hanne Stotesbury2Jamie Kawadler3April Slee4Baba Inusa5Maria Pelidis6Jo Howard7Jo Howard8Subarna Chakravorty9Sue Height10Moji Awogbade11Fenella J. Kirkham12Fenella J. Kirkham13Fenella J. Kirkham14Fenella J. Kirkham15Christina Liossi16Christina Liossi17Developmental Neurosciences Unit and Biomedical Research Centre, University College London Great Ormond Street Institute of Child Health, London, United KingdomDevelopmental Neurosciences Unit and Biomedical Research Centre, University College London Great Ormond Street Institute of Child Health, London, United KingdomDevelopmental Neurosciences Unit and Biomedical Research Centre, University College London Great Ormond Street Institute of Child Health, London, United KingdomDevelopmental Neurosciences Unit and Biomedical Research Centre, University College London Great Ormond Street Institute of Child Health, London, United KingdomDepartment of Primary Care and Population Health, University College London, London, United KingdomDepartment of Paediatric Haematology, Evelina London Children's Hospital, Guy's and St Thomas' NHS Trust, London, United KingdomDepartment of Paediatric Haematology, Evelina London Children's Hospital, Guy's and St Thomas' NHS Trust, London, United KingdomDepartment of Haematological Medicine, King's College London, London, United KingdomDepartment of Haematology, Guy's and St Thomas' NHS Foundation Trust, London, United KingdomPaediatric Haematology, King's College Hospital NHS Trust, London, United KingdomPaediatric Haematology, King's College Hospital NHS Trust, London, United KingdomDepartment of Haematological Medicine, King's College Hospital NHS Trust, London, United KingdomDevelopmental Neurosciences Unit and Biomedical Research Centre, University College London Great Ormond Street Institute of Child Health, London, United KingdomDepartment of Clinical Haematology, University College London Hospitals NHS Foundation Trust, London, United KingdomDepartment of Child Health, University Hospital Southampton NHS Foundation Trust, Southampton, United Kingdom0Clinical and Experimental Sciences, University of Southampton, Southampton, United Kingdom1Department of Psychology, University of Southampton, Southampton, United Kingdom2Paediatric Psychology, Great Ormond Hospital for Children NHS Foundation Trust, London, United KingdomSickle 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 (R2 = 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.https://www.frontiersin.org/articles/10.3389/fpsyg.2021.681137/fullexecutive functionpain burdensleepemergency department visitcoping |
| spellingShingle | Anna M. Hood Melanie Kölbel Hanne Stotesbury Jamie Kawadler April Slee Baba Inusa Maria Pelidis Jo Howard Jo Howard Subarna Chakravorty Sue Height Moji Awogbade Fenella J. Kirkham Fenella J. Kirkham Fenella J. Kirkham Fenella J. Kirkham Christina Liossi Christina Liossi Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell Disease Frontiers in Psychology executive function pain burden sleep emergency department visit coping |
| title | Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell Disease |
| title_full | Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell Disease |
| title_fullStr | Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell Disease |
| title_full_unstemmed | Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell Disease |
| title_short | Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell Disease |
| title_sort | biopsychosocial predictors of quality of life in paediatric patients with sickle cell disease |
| topic | executive function pain burden sleep emergency department visit coping |
| url | https://www.frontiersin.org/articles/10.3389/fpsyg.2021.681137/full |
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