scholarly journals Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell Disease

2021 ◽  
Vol 12 ◽  
Author(s):  
Anna M. Hood ◽  
Melanie Kölbel ◽  
Hanne Stotesbury ◽  
Jamie Kawadler ◽  
April Slee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Emergency Department ◽  
Executive Function ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Pain Coping ◽  
Cell Disease ◽  
Paediatric Patients ◽  
Ed Visits

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.

scholarly journals Executive Functioning Mediates the Relationship Between Pain Coping and Quality of Life in Youth With Sickle Cell Disease

2018 ◽  
Vol 43 (10) ◽  
pp. 1160-1169 ◽  
Author(s):  
Natasha N Ludwig ◽  
Soumitri Sil ◽  
Meena K Khowaja ◽  
Lindsey L Cohen ◽  
Carlton Dampier
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Executive Functioning ◽  
Sickle Cell ◽  
Pain Coping ◽  
Cell Disease ◽  
The Relationship

scholarly journals Emergency Department Quality of Care for Sickle Cell Disease in Ontario, Canada: A Population-Based Matched Cohort Study

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 38-39
Author(s):  
Derek Chan ◽  
Fiona Kouyoumdjian ◽  
Uma Athale ◽  
Jacob Pendergrast ◽  
Madeleine Verhovsek
Keyword(s):  
Emergency Department ◽  
Quality Of Care ◽  
Sickle Cell Disease ◽  
Hospital Admission ◽  
Sickle Cell ◽  
Cell Disease ◽  
Matched Group ◽  
High Acuity ◽  
Ed Visits

Background: Acute vaso-occlusive crisis (VOC) in sickle cell disease (SCD) frequently leads patients to seek emergency department (ED) care. Whether or not health inequities exist, and their exact nature, is poorly understood in ED visits for SCD VOC within a universal publicly funded healthcare system. In this study, we aimed to address this knowledge gap by characterizing the landscape of ED care burden and quality indicators for SCD VOC management in the province of Ontario, Canada. Methods: We used population-level health administrative data to identify patients with SCD in Ontario who presented to the ED with SCD VOC (ICD-10-CA code D57.0) from 2006 to 2018. We evaluated quality of care indicators in the ED for this population and compared these with a general population group matched by age, sex, neighbourhood income quintile, geography (forward sortation area) and date of ED visit (-15 to +15 days per visit) (35,370 ED visits; 27,195 patients). Results: We identified 1,811 patients who presented to the ED with SCD VOC for a total of 13,123 ED visits over the study period. Of ED presentations, 40% were pediatric (< 18 years), 47% were male and 99% lived in urban settings. Compared to ED visits for the matched group, ED visits for SCD VOC had a significantly higher proportion of high acuity triage scores (CTAS 1 or 2) (74% vs 18%; p < 0.001), shorter time to initial physician assessment (76 ± 82 vs 90 ± 86 minutes; mean ± SD, p < 0.001), longer period of ED assessment and observation (432 ± 261 vs 212 ± 179 minutes; p < 0.001), increased likelihood of hospital admission (62% vs 5%; p < 0.001), longer duration of inpatient stay (5.2 ± 6.7 vs 4.0 ± 8.1 days; p < 0.001), and higher rates of repeat ED visits within 30 days of ED discharge (0.57 ± 1.44 vs 0.26 ± 0.79 visits; p < 0.001). We found specific socio-demographic variables associated with a poorer quality of care in ED visits for SCD VOC, including patients who were adults, male, from a low-income neighbourhood, having a greater number of dependents, a higher neighbourhood level of material deprivation, from an ethnically-concentrated neighbourhood, and those who lived in a residentially unstable region. Bivariate analyses for clinically meaningful outcomes (defined as ED disposition, repeat ED visit within 30 days, length of hospital admission stay, and being among the highest user bracket of ED care) further revealed significant socio-demographic associations that validated the clinical relevance of these determinants underlying ED metric disparities found within the SCD cohort (Table 1). In subgroup comparisons, we observed a significant difference in triage acuity scoring for adults compared with children with SCD VOC, with a 25% lower rate of high acuity triage score (CTAS 1 or 2) (66% vs 86%). We also found that despite a majority of adults with SCD VOC receiving these scores compared to those in the matched group (66% vs 18%), their mean times to initial physician assessment were not significantly different (90 ± 94 vs 91 ± 89 minutes), reflecting an average SCD VOC wait time longer than the clinical practice guideline recommendation of first dose analgesic within the first 60 minutes of ED arrival. Furthermore, we identified a negative correlation between poor ED metrics and patients with SCD who were highly dependent on ED care (defined as 4-9 or ≥ 10 ED visits for SCD VOC per year) at levels significantly above the matched comparative baseline. Conclusions: Indicators of ED care for SCD largely reflect the clinical acuity and severity of VOC presentations in Ontario, Canada. However, significant disparities in the quality of care received and in clinical outcomes for specific subgroups of patients with SCD, including those most vulnerable within this patient population, raises concern from a health equity perspective.By leveraging this landscape of SCD ED care, future policy, clinical and research efforts must work to understand, address and close these gaps in order to achieve best and equitable care for all. Disclosures No relevant conflicts of interest to declare.

Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease

2006 ◽  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Childhood Cancer ◽  
Children And Adolescents ◽  
Peer Relationships ◽  
Sickle Cell ◽  
Cell Disease ◽  
Life Issues ◽  
Art Research

Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology. This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field--the first of its kind in over a decade. Over 60 renowned authors have been assembled to provide a thorough presentation of the state-of-the art research and literature, with topics including: -Neuropsychological effects of chemotherapy and radiation therapy -Bone marrow transplantation -Important issues about quality of life during and following treatment -Collaborative research among child-focused psychologists -Standards of psychological care for children and adolescents -Stress and coping in the pediatric cancer experience -The role of family and peer relationships The Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease represents both multidisciplinary and international efforts, an alliance between physicians and parents, and a combination of research and service. With a wealth of information of great interest to patients and their families, this volume will also be a welcome resource to the psychologists, psychiatrists, pediatricians, oncologists, nurses, and social workers who confront these issues as they help children and their families through the treatment, recovery, and grieving processes.

Health-related quality of life and neuropathic pain in sickle cell disease in Jamaica

2021 ◽  
pp. 101107
Author(s):  
Rachel Bartlett ◽  
Zachary Ramsay ◽  
Amza Ali ◽  
Justin Grant ◽  
Angela Rankine-Mullings ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neuropathic Pain ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

Chronic brain damage in sickle cell disease and its relation with quality of life

2016 ◽  
Vol 147 (12) ◽  
pp. 531-536
Author(s):  
Elena Cela ◽  
Ana G. Vélez ◽  
Alejandra Aguado ◽  
Gabriela Medín ◽  
José M. Bellón ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Brain Damage ◽  
Sickle Cell ◽  
Cell Disease

Hip Dysfunction and Quality of Life in Patients With Sickle Cell Disease

2015 ◽  
Vol 54 (14) ◽  
pp. 1354-1358 ◽  
Author(s):  
Cristiane Dias Malheiros ◽  
Luanne Lisle ◽  
Marilda Castelar ◽  
Katia Nunes Sá ◽  
Marcos Almeida Matos
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease

Anxiety, depressive disorders, and quality of life in adults with sickle cell disease

2013 ◽  
Vol 20 (2) ◽  
pp. 80-86 ◽  
Author(s):  
H. El-Shinnawy ◽  
T. Goueli ◽  
M. Nasreldin ◽  
A. Meshref
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Depressive Disorders ◽  
Cell Disease

Health Related Quality of Life of Children with Sickle Cell Anemia and Their Parents; Quantitative Study in Albaha; Saudi Arabia

2021 ◽  
pp. 9-17
Author(s):  
Turki Alzahrani ◽  
Raed Alzahrani ◽  
Amer Alzahrani ◽  
Abdullah Alzahrani ◽  
Abdu Adawi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Saudi Arabia ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Healthy Children ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

Aims: To gain a better understanding of the quality of life (QoL) of children and impact of this disease on parents QoL. Study Design: Cross-sectional study. Place and Duration of Study: The study was conducted in King Fahd Hospital, Albaha city, Albaha, Saudi Arabia, between March2020 and February 2021. Methodology: We included 95 responses. Two different tools were used for the purpose of this study. PedsQL™ Sickle Cell Disease Module was used to measure health-related quality of life (HRQoL) in healthy children and adolescents and those with acute and chronic health conditions. Moreover, PedsQL™ Family Information Form was completed by caregivers. Median and interquartile range were used for numerical variables since they were skewed. Bivariate analyses were carried out using non-parametrical tests and Pearson correlation. The prediction of QoL was accomplished through multivariate analysis. Results: A total of (95) responses were analyzed. Female respondents were 52.6%. The age median was 12 (IQR=10-14). Mothers represented the most frequent informant 46.3% in this current study. Significant association was found between QoL and certain independent factors, some of which is parental level of education (P< .001) and marital support (P< .001). Conclusion: Sickle cell disease (SCD) is a major condition accounts for a huge burden on variable levels. This study reported that low QoL among children affected by SCD. Higher education and current marital status of the parents were significantly associated with high QoL in SCD patients. Number of workdays affected due to child health was significantly correlated with low QoL.

Anxiety, Depression and Quality of Life in Adults with Sickle Cell Disease

2018 ◽  
Vol 10 (1) ◽  
Author(s):  
Chetcha Chemegni B ◽  
Kamga Olen JPO ◽  
Um Nyobe LJ ◽  
Ntone Enyime F ◽  
Mbanya D
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
Anxiety Depression
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