Health‐related quality of life in children with sickle cell disease: A report from the Comprehensive Sickle Cell Centers Clinical Trial Consortium

Dampier, Carlton; Lieff, Susan; LeBeau, Petra; Rhee, Sang Youl; McMurray, Marsha; Rogers, Zora R.; Smith‐Whitley, Kim; Wang, Winfred C.

doi:10.1002/pbc.22497

Cited by 155 publications

(210 citation statements)

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“…Additionally, studies have shown that fatigue may reduce patients' ability to perform daily activities (13,17). Dampier et al (13,17) found that adolescents with SCD reported lower levels of sleep and rest, and elevated fatigue, compared to healthy peers; another study found that young adults with SCD reported lower levels of energy than the general population.…”

Section: Introductionmentioning

confidence: 99%

“…In managing serious and unpredictable complications, patients with SCD suffer numerous psychosocial problems such as reduced self-esteem, feelings of frustration (7), depression (7)(8)(9), anxiety and stress (8), and disruption of interpersonal relationships (10); these often lead to fatigue (11)(12)(13)(14) and poor quality of life (13,(15)(16)(17) in these patients. Bakri et al (10) showed that depression, anxiety and stress are prevalent in SC patients compared with healthy subjects.…”

Section: Introductionmentioning

confidence: 99%

“…Extant research indicates a relationship between pain, fatigue, depression, anxiety, and stress in SCD patients (12). Severe pain in SC patients has been associated with reduced vitality, increased fatigue (11,13) and increased prevalence of depression, anxiety, and stress (3,21,22). Dampier et al (13) demonstrated a significant relationship between pain and fatigue in SC patients.…”

Section: Introductionmentioning

confidence: 99%

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The Effectiveness of Self Management Program on Pain, Fatigue, Depression, Anxiety, and Stress in Sickle Cell Patients: A Quasi-Experimental Study

Ahmadi

Shariati

Poormansouri

et al. 2015

Jundishapur J Chronic Dis Care

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Background:Patients with sickle cell disease, who must manage serious and unpredictable complications related to their disease, particularly chronic pain, suffer from numerous psychosocial problems such as depression, anxiety, stress, and disruption of interpersonal relationships; these problems often lead to fatigue and poor quality of life. Objectives: This study aimed to determine the effectiveness of self-management programs targeting pain, fatigue, depression, anxiety, and stress in sickle cell patients. Patients and Methods:This was a quasi-experimental study; participants were 53 patients with sickle cell disease who were referred to the Thalassemia Clinic of Ahvaz Shafa Hospital. Participants were recruited by census in 2013. Participants received a self-management program that was implemented in five sessions over 12 weeks. Levels of fatigue, depression, anxiety, and stress were assessed before and 24 weeks after the intervention; pain was assessed during the intervention and at a 24 week post-intervention follow-up using the fatigue severity scale (FSS), DASS21, and a pain record. Descriptive statistics, Fisher's exact test, Chi-square, independent t-tests, paired t-tests, repeated measures tests and correlations were used to analyze the data. Results: Scores for fatigue, anxiety, depression, and stress after the intervention were significantly decreased compared to before the intervention (P < 0.001). Repeated measures testing showed that mean scores for frequency and duration of pain decreased significantly during the 12 weeks of intervention, as well as during the 24 weeks of follow-up (P < 0.001). Conclusions:The results suggest the effectiveness of self-management programs on the reduction of pain, fatigue, anxiety, depression, and stress in sickle cell patients. Therefore, self-management programs are advisable in order to empower patients and assist their management of health-related problems.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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The Effectiveness of Self Management Program on Pain, Fatigue, Depression, Anxiety, and Stress in Sickle Cell Patients: A Quasi-Experimental Study

Ahmadi

Shariati

Poormansouri

et al. 2015

Jundishapur J Chronic Dis Care

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“…28 The SF-36 has been validated in populations with chronic diseases 29,30 and in patients experiencing chronic pain similar to SCD patients. 31 In adults with SCD, HRQoL was previously assessed using the SF-36 in large clinical studies, 12,32 and it has been validated against 2 other quality-of-life measures in SCD patients. 33 The SF-36 Health Survey consists of 36 items that cover 8 sections consisting of physical functioning; role limitations due to physical health, bodily pain, general health, vitality, and social functioning; and role limitations due to emotional problems and mental health.…”

Section: Hrqolmentioning

confidence: 99%

Depression, quality of life, and medical resource utilization in sickle cell disease

et al. 2017

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Key Points• Depression was found in 35.2% of adult SCD patients and was strongly associated with worse physical and mental quality-of-life outcomes.• Total health care costs for adult SCD patients with depression were more than double those of SCD patients without depression.Sickle cell disease (SCD) is a chronic, debilitating disorder. Chronically ill patients are at risk for depression, which can affect health-related quality of life (HRQoL), health care utilization, and cost. We performed an analytic epidemiologic prospective study to determine the prevalence of depression in adult patients with SCD and its association with HRQoL and medical resource utilization. Depression was measured by the Beck Depression Inventory and clinical history in adult SCD outpatients at a comprehensive SCD center. HRQoL was assessed using the SF36 form, and data were collected on medical resource utilization and corresponding cost. Neurocognitive functions were assessed using the CNS Vital Signs tool.Pain diaries were used to record daily pain. Out of 142 enrolled patients, 42 (35.2%) had depression. Depression was associated with worse physical and mental HRQoL scores (P , .0001 and P , .0001, respectively). Mean total inpatient costs ($25 000 vs $7487, P 5 .02) and total health care costs ($30 665 vs $13 016, P 5 .01) were significantly higher in patients with depression during the 12 months preceding diagnosis. Similarly, during the 6 months following diagnosis, mean total health care costs were significantly higher in depressed patients than in nondepressed patients ($13 766 vs $8670, P 5 .04). Depression is prevalent in adult patients with SCD and is associated with worse HRQoL and higher total health care costs. Efforts should focus on prevention, early diagnosis, and therapy for depression in SCD.

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“…10,11 Aside from the direct physical morbidity of these recurrent painful attacks, other significant outcomes such as quality of life, school attendance, and societal participation of patients are greatly affected. [12][13][14][15][16][17][18] Moreover, high societal costs are involved. Direct costs arise from high health care utilization, and indirect costs include absence from work associated with impaired physical ability to perform daily tasks.…”

Section: Introductionmentioning

confidence: 99%

Pharmacotherapeutical strategies in the prevention of acute, vaso-occlusive pain in sickle cell disease: a systematic review

et al. 2017

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Sickle-cell disease (SCD) is characterized by frequent and painful vaso-occlusive crises (VOCs).Various treatments have been evaluated over the years. However, a clear overview is lacking.The objective of this study was to systematically review all pharmacotherapeutical strategies in the prevention of VOCs beyond hydroxyurea. We performed a systematic literature search (MEDLINE, Embase, CENTRAL). Eligible studies were controlled clinical trials evaluating pharmacotherapeutical interventions targeting the reduction of VOCs in patients with SCD.Primary outcomes were the number or duration of SCD-related pain days, VOCs, or hospital admissions for VOCs. Secondary outcomes included time to first VOC or hospital admission for a VOC. A standardized data extraction sheet was used. The methodological quality of studies was assessed using Cochrane's risk-of-bias tool. A total of 36 studies were included in this review, covering 26 different prophylactic interventions. The most promising interventions for reducing the frequency of either VOCs or hospitalizations were the oral antioxidants L-glutamine and v-3 fatty acids and the IV antiadhesive agent crizanlizumab. Twenty-three studies did not show any beneficial effect of the intervention under investigation, and 6 studies were either too small or methodologically inadequate to draw conclusions. Because of the heterogeneity of interventions, no meta-analysis was performed. In conclusion, this review identified 3 promising pharmacotherapeutical strategies in the prevention of VOCs in SCD. Importantly, this study highlights the discrepancy between the significant burden of SCD worldwide and the low number of adequate trials performed. This review was

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Health‐related quality of life in children with sickle cell disease: A report from the Comprehensive Sickle Cell Centers Clinical Trial Consortium

Cited by 155 publications

References 28 publications

The Effectiveness of Self Management Program on Pain, Fatigue, Depression, Anxiety, and Stress in Sickle Cell Patients: A Quasi-Experimental Study

The Effectiveness of Self Management Program on Pain, Fatigue, Depression, Anxiety, and Stress in Sickle Cell Patients: A Quasi-Experimental Study

Depression, quality of life, and medical resource utilization in sickle cell disease

Pharmacotherapeutical strategies in the prevention of acute, vaso-occlusive pain in sickle cell disease: a systematic review

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