scholarly journals Parent-reported sleep problems in children and adolescents with sickle cell disease: relationship to health-related quality of life

2021 ◽  
Author(s):  
Serkan Gunes ◽  
Rahime Aldemir ◽  
Adem Gunes ◽  
Ozalp Ekinci
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Sickle Cell ◽  
Sleep Problems ◽  
Well Being ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

IntroductionChildren with sickle cell disease (SCD) can present a variety of clinical symptoms that may affect their sleep and health-related quality of life (HRQOL). This study aims to investigate the relation between sleep problems and HRQOL in children and adolescents with SCD.Material and methodsThe sample included 86 children and adolescents in the SCD patient group and 82 healthy controls, with an age range of 8-16 years. Subjects for the study were recruited from the Sickle Cell and Thalassemia Center of Hatay State Hospital, Hatay, Turkey. The Children’s Sleep Habits Questionnaire (CSHQ) was used to evaluate sleep problems and Kinder Lebens­qualitätsfragebogen: Children’s Quality of Life Questionnaire – revis­ed (KINDL-R) was used to examine HRQOL.ResultsTotal score, bedtime resistance, and night waking subscores of CSHQ were significantly higher in children with SCD when compared to healthy children. Total score, physical well-being, emotional well-being, social, and school subscores of KINDL-R were significantly lower in the patient group. Among SCD children, total score, bedtime resistance, sleep onset delay, daytime sleepiness, and parasomnias subscores of CSHQ were negatively correlated with KINDL-R total score. In the regression model, disease severity and CSHQ total score had significant negative associations with KINDL-R total score.ConclusionsSleep problems in SCD children appear to be negatively linked with HRQOL. Disease severity and sleep problems may be predictors of overall HRQOL in children and adolescents with SCD.

scholarly journals Health-related Quality of Life in Children and Adolescents With Sickle Cell Disease

2011 ◽  
Vol 25 (4) ◽  
pp. 208-215 ◽  
Author(s):  
Juanita Conkin Dale ◽  
Cindy J. Cochran ◽  
Lonnie Roy ◽  
Ethel Jernigan ◽  
George R. Buchanan
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Children And Adolescents ◽  
Sickle Cell ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

scholarly journals Health-related quality of life in children and adolescents with sickle cell disease

2020 ◽  
Vol 9 (9) ◽  
pp. e998998120
Author(s):  
Gabriella Aguiar Rodrigues Veras ◽  
Caroline Maria Igrejas Lopes ◽  
Ana Cláudia Alves e Luna ◽  
Valdenice Aparecida de Menezes
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Children And Adolescents ◽  
Sickle Cell ◽  
Physical Functioning ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

To assess the health-related quality of life of children and adolescents with sickle cell disease (SCD). This is a cross-sectional study carried out with 97 male and female patients aged 5 to 18 years with clinical and laboratory diagnosis of SCD, seen at the Hematology and Hemotherapy Hospital of Pernambuco. The Pediatric Quality of Life InventoryTM questionnaires, version 4.0 – child/adolescent report – were applied. Most patients were female (76.3%), had sickle cell anemia (89.7%) and mixed race (59.8%). There was a significant association in the psychosocial domain between age groups 5 to 7 (72.10) and 8 to 12 years (p≤0.05), the latter of which had the worst quality of life score (65.36). There were significant differences between sexes only in patients aged 13 to 18 years for physical functioning and for the overall mean of the domains. The means in both cases were higher in female patients than in male ones (70.89 x 56.88 for physical functioning and 71.72 x 59.77 for the overall mean of the domains). Poor quality of life was observed among children and adolescents with SCD, with negative impacts according to age and sex.

Sickle Cell Disease Health-Related Quality of Life Questionnaire Project.

Blood ◽  
2006 ◽  
Vol 108 (11) ◽  
pp. 3339-3339 ◽  
Author(s):  
Ellen M. Werner ◽  
Marsha Treadwell ◽  
Kathryn Hassell ◽  
San Keller ◽  
Roger Levine
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Well Being ◽  
Project Team ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

Abstract Background: Quality of life (QOL) is a broad term that is clinically meaningless unless operationalized and measured as a patient outcome. Health-related quality of life (HRQOL) instruments, such as the SF36, are useful for comparisons among different patient populations. However, to measure disease-specific HRQOL, which enables determination of changes related to a disease or its treatments, it is necessary to develop and validate an instrument in a specific patient population. Disease-specific HRQOL describes the impact of a disease on patients’ well-being and functioning. Objective: The aim of this project is to develop and validate a psychometrically-sound questionnaire to measure HRQOL among adults with sickle cell disease (SCD) which will be useful for incorporation of HRQOL in research. Methods: Phase 1 of the project involved a review of published literature on HRQOL for adults with SCD which enabled construction of an initial taxonomy of domains. Qualitative data collection methods--focus groups (FG), and critical incident (CII) and key informant (KII) interviews—were used to identify SCD-specific HRQOL domains. FG, CII and KII were conducted with 100 patients and 15 providers to obtain specific descriptions of how SCD affects people’s lives. Patients were recruited in geographically diverse areas in the USA. Fifty-five percent were recruited through local chapters of the Sickle Cell Disease Association of America, and included any type of SCD. FG, CII, and KII continued until no new incidents were reported. Project team members individually and independently coded all incidents and classified them according to domains in the taxonomy. The initial taxonomy was revised to include information from the FG and interviews. Each domain was further divided into categories and subcategories until no additional details could be extracted from the incidents. Inter-rater reliability was determined using the kappa-statistic. Results: The taxonomy includes the following domains: (1) Emotions (2) Attitudes and Beliefs (3) Family/Social Relationships (4) Morbidities/Co-Morbidities (5) Sexuality and Reproduction (6) Medical Care (7) Health Insurance (8) Employment (9) Education (10) Faith/Spirituality (11) Altruism (12) Stress/Control/Predictability (13) Activity Limitations (14) Housing (15) Community. Within each domain are categories and subcategories that further describe issues that are affected by SCD and its treatment. For example, the domain Morbidities and Co-Morbidities includes sleep disturbance, addiction, pain, and medical complications. The project team derived specific questionnaire items from the taxonomy to create an item bank which will be tested in cognitive interviews during Phase 2 of the project to create a usable subset of items. The subset will be field-tested with patients to assess the instrument’s psychometric properties and to insure its feasibility. Discussion: The taxonomy is a comprehensive model of issues that affect adult SCD patients. It includes well-being and functioning, which are HRQOL outcomes, and patient preferences, satisfaction with and access to care, which are not traditionally assessed by HRQOL instruments. After validation and development of supporting materials, the project team will disseminate these resources and provide consultative services to the research community.

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

scholarly journals Health-Related Quality of Life of Children and Adolescents with Sickle Cell Disease in the Middle East and North Africa Region

2020 ◽  
Vol 20 (4) ◽  
pp. e280-289
Author(s):  
Suthan Pandarakutty ◽  
Kamala Murali ◽  
Judie Arulappan ◽  
Sulaiman D. Al Sabei
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Middle East ◽  
Children And Adolescents ◽  
North Africa ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

Sickle cell disease (SCD) can significantly impair the health-related quality of life (HRQOL) of children and adolescents. This review aimed to assess current evidence regarding the HRQOL of children and adolescents with SCD in the Middle East and North Africa region. A systematic search of various databases was conducted to identify relevant articles, including MEDLINE® (National Library of Medicine, Bethesda, Maryland, USA), Scopus® (Elsevier, Amsterdam, the Netherlands), Cumulative Index to Nursing and Allied Health Literature®, Masader (Oman Virtual Science Library, Muscat, Oman) and EBSCOhost (EBSCO Information Services, Ipswich, Massachusetts, USA). A total of 533 articles were identified; however, only 10 were eligible for inclusion in the final analysis. Results from these studies showed that children and adolescents with SCD had compromised HRQOL compared to their healthy peers, particularly in terms of physical, psychosocial, familial, financial and academic functioning. Therefore, interventions are necessary to improve overall HRQOL outcomes for this population. Keywords: Sickle Cell Disease; Health-Related Quality Of Life; Infants; Children; Adolescents; Middle East; North Africa.

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.

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