Predictors of Health-Related Quality of Life over Time Among Adolescents and Young Adults with Sickle Cell Disease

Jackson, Jamie L.; Lemanek, Kathleen L.; Clough-Paabo, Emily; Rhodes, Melissa

doi:10.1007/s10880-014-9406-3

Cited by 20 publications

(23 citation statements)

References 27 publications

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“…A retrospective study suggested that poorer physical HRQoL domains were significantly correlated to more healthcare utilization events [42]. Our unadjusted analyses confirmed these findings: all dimensions of HRQoL were found to be predictors of high rates of SCD-related ED visits except emotional well-being.…”

Section: Discussionsupporting

confidence: 82%

Saudi SCD patients’ symptoms and quality of life relative to the number of ED visits

et al. 2016

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BackgroundIndividuals living with sickle cell disease (SCD) have significantly increased emergency department (ED) use compared to the general population. In Saudi Arabia, health care is free for all individuals and therefore has no bearing on increased ED visits. However, little is known about the relationship between quality of life (QoL) and frequency of acute care utilization in this patient population.MethodsA cross-sectional study was conducted on 366 patients with SCD who attended the outpatient department at King Fahad Hospital, Hofuf, Saudi Arabia. Data were collected through self-administered surveys, which included: demographics, SCD-related ED visits, clinical issues, and QoL levels. We assessed the ED use by asking for the number of SCD-related ED visits within a 6-month period.ResultsThe self-report survey of ED visits was completed by 308 SCD patients. The median number of SCD-related ED visits within a 6-month time period (IQR) was four (2-7 visits). According to the unadjusted negative binomial model, the rate of SCD-related ED visits increased by (46, 39.3, 40, and 53.5 %) for patients with fever, skin redness with itching, swelling, and blood transfusion, respectively. Poor QoL tends to increase the rate of SCD-related ED visits. Well education and poor general health positively influenced the rate of SCD-related ED visits. Well education tends to increase the rate of SCD-related ED visits by 50.2 %. The rate of SCD-related ED visits decreased by 1.4 % for every point increase in general health.ConclusionSaudi patients with sickle cell disease reported a wide range of SCD-related ED visits. It was estimated that six of 10 SCD patients had at least three ED visits within a 6-month period. Well education and poor general health resulted in an increase in the rate of SCD-related ED visits.

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Section: Discussionsupporting

confidence: 82%

Saudi SCD patients’ symptoms and quality of life relative to the number of ED visits

et al. 2016

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“…A large body of literature has investigated the quality of life of this population (Barakat, Patterson, Daniel, & Dampier, 2008;Jackson, Lemanek, Clough-Paabo, & Rhodes, 2014;Menezes, Len, Hil ario, Terreri &, Braga, 2013). An earlier study observed that children and adolescents with SCD spend most of their time enduring the chronic and acute pain events at home, tend to underreport their pain levels, and tend to dismiss the negative effects of SCD on their daily lives (Fuggle, Shand, Gill, & Davies et al, 1996).…”

Section: Quality Of Life In Children With Scdmentioning

confidence: 99%

The Daily Experiences of Adolescents in Lebanon With Sickle Cell Disease

Atoui¹,

Badr²,

Brand³

et al. 2015

Journal of Pediatric Health Care

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“…The treatment of TM requires lifelong red cell transfusion support with consequent iron overload, especially in the absence of optimal and lifelong iron chelation therapy, in addition to other hazards of transfusions. Collectively, these complications result in a deteriorating quality of life (QOL) and function in affected individuals with both disorders .…”

Section: Introductionmentioning

confidence: 99%

Successful matched sibling donor marrow transplantation following reduced intensity conditioning in children with hemoglobinopathies

et al. 2015

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*Fifty-two children with symptomatic sickle cell disease sickle cell disease (SCD) (N 5 43) or transfusiondependent thalassemia (N 5 9) received matched sibling donor marrow (46), marrow and cord product (5), or cord blood (1) allografts following reduced intensity conditioning (RIC) with alemtuzumab, fludarabine, and melphalan between March 2003 and May 2014*. The Kaplan-Meier probabilities of overall and event-free survival at a median of 3.42 (range, 0.75-11.83) years were 94.2% and 92.3% for the group, 93% and 90.7% for SCD, and 100% and 100% for thalassemia, respectively. Treatment-related mortality (all related to graft versus host disease, GVHD) was noted in three (5.7%) recipients, all 17-18 years of age. Acute and chronic GVHD was noted in 23% and 13%, respectively, with 81% of recipients off immunosuppression by 1 year. Graft rejection was limited to the single umbilical cord blood recipient who had prompt autologous hematopoietic recovery. Fourteen (27%) had mixed chimerism at 1 year and beyond; all had discontinued immunosuppression between 4 and 12 months from transplant with no subsequent consequence on GVHD or rejection. Infectious complications included predominantly bacteremia (48% were staphylococcus) and CMV reactivation (43%) necessitating preemptive therapy. Lymphocyte recovery beyond 6 months was associated with subsidence of infectious complications. All patients who engrafted were transfusion independent; no strokes or pulmonary complications of SCD were noted, and pain symptoms subsided within 6 months posttransplant. These findings support using RIC for patients with hemoglobinopathy undergoing matched sibling marrow transplantation (*www

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Predictors of Health-Related Quality of Life over Time Among Adolescents and Young Adults with Sickle Cell Disease

Cited by 20 publications

References 27 publications

Saudi SCD patients’ symptoms and quality of life relative to the number of ED visits

Saudi SCD patients’ symptoms and quality of life relative to the number of ED visits

The Daily Experiences of Adolescents in Lebanon With Sickle Cell Disease

Successful matched sibling donor marrow transplantation following reduced intensity conditioning in children with hemoglobinopathies

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