Quality of Life in Sickle Cell Disease

Treadwell, Marsha; Anie, Kofi A.

doi:10.1016/j.hoc.2022.06.010

Cited by 7 publications

(5 citation statements)

References 46 publications

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“…Using the NHIS, we compared neuro-developmental conditions, healthcare and special education services, and barriers to healthcare among children with and without SCD in the U.S. Children with SCD in the U.S. (who are majority Blacks in the NHIS dataset) have significantly more neuro-developmental conditions, higher healthcare utilization, and experience greater healthcare barriers than their non-SCD counterparts, which is consistent with results from the previous 1997–2005 NHIS analyses [ 7 ] and various literature on the SDoH for SCD [ 19 , 20 , 21 , 22 ]. Although children with SCD have greater doctor’s office and emergency room visits, we observed that caregivers/parents/guardians of these children reported encountering more barriers to healthcare access compared to non-SCD children.…”

Section: Discussionsupporting

confidence: 85%

“…In addition, SCD-related health complications and comorbidities, such as infections, pain crises, acute chest syndrome, and stroke, lead to school absences, thus negatively influencing academic achievement [ 14 , 18 ]. Unfortunately, many educators are unaware of the increased need for special services that children with SCD require [ 3 ] due to the social determinants of health (SDoH) and the inconsistent evaluation of these contextual factors for SCD [ 19 , 20 , 21 , 22 ]. SDoH can be broadly defined as “the conditions in which people are born, grow, live, work, and age [ 23 ]”.…”

Section: Introductionmentioning

confidence: 99%

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Analysis of the 2007–2018 National Health Interview Survey (NHIS): Examining Neurological Complications among Children with Sickle Cell Disease in the United States

Peprah¹,

Gyamfi²,

Lee³

et al. 2023

IJERPH

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This study compared neurological complications among a national sample of United States children with or without sickle cell disease (SCD) and evaluated health status, healthcare and special education utilization patterns, barriers to care, and association of SCD status and demographics/socioeconomic status (SES) on comorbidities and healthcare utilization. Data was acquired from the National Health Interview Survey (NHIS) Sample Child Core questionnaire 2007–2018 dataset that included 133,542 children. An affirmation from the guardian of the child determined the presence of SCD. Regression analysis was used to compare the associations between SCD and demographics/SES on neurological conditions at p < 0.05. Furthermore, adjusted odds ratios (AORs) were estimated for having various neurological conditions. Of the 133,481 children included in the NHIS, the mean age was 8.5 years (SD: 0.02) and 215 had SCD. Of the children with SCD, the sample composition included male (n = 110), and Black (n = 82%). The SCD sample had higher odds of having neuro-developmental conditions (p < 0.1). Families of Black children (55% weighted) reported household incomes < 100% of federal poverty level. Black children were more likely to experience longer wait times to see the doctor (AOR, 0.3; CI 0.1–1.1). Compared to children without SCD, those with SCD had a greater chance of seeing a medical specialist within 12 months (AOR 2.3; CI 1.5–3.7). This representative sample of US children with SCD shows higher odds of developing neurological complications, increased healthcare and special education services utilization, with Black children experiencing a disproportionate burden. This creates the urgency to address the health burden for children with SCD by implementing interventions in healthcare and increasing education assistance programs to combat neurocognitive impairments, especially among Black children.

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Section: Discussionsupporting

confidence: 85%

Section: Introductionmentioning

confidence: 99%

Analysis of the 2007–2018 National Health Interview Survey (NHIS): Examining Neurological Complications among Children with Sickle Cell Disease in the United States

Peprah¹,

Gyamfi²,

Lee³

et al. 2023

IJERPH

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“…Research focusing on HRQoL is essential to ensure the provision of personalized and effective patient care, reduce the onset of complications, advocate for policy changes, and ultimately help improve the lives of individuals living with chronic conditions, including SCD. 20,21 As such, this study aimed to describe the HRQoL of Omani adult patients with SCD and determine associations with various sociodemographic and clinical characteristics.…”

Section: Discussionmentioning

confidence: 99%

“…Each item in the SF-36 questionnaire is represented as a single variable and scaled from 0 to 100, with a higher score indicative of better HRQoL. 21 The original SF-36 has been shown to be a reliable measure of HRQoL, with Cronbach's alpha values ranging from 0.78-0.93 17,18,19 .…”

Section: Study Instrumentmentioning

confidence: 99%

Health-Related Quality of Life of Omani Adult Patients with Sickle Cell Disease at the Sultan Qaboos University Hospital

Al-Hinai,

Al-Rashdi,

Al-Sumri

2024

Sultan Qaboos Univ Med J

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Objectives: The quality of life of Omani adults with sickle cell disease (SCD) is not yet known. This study aimed to determine the health-related quality of life (HRQoL) of adult Omani patients with SCD attending a single tertiary center. Methods: A cross-sectional study was conducted among patients with SCD from June to October 2022 at the Sultan Qaboos University Hospital. A validated Arabic version of the 36-Item Short-Form Health Survey (SF-36) was used to assess HRQoL over eight domains. Results: A total of 235 patients with SCD participated in the study, of which the majority were female (74.9%) and 18–35 years of age (64.6%). The lowest HRQoL was reported for the domain of role limitations due to physical health (median score: 25.0; interquartile range [IQR]: 35.0), while the highest was seen for role limitations due to emotional problems (median score: 66.7, IQR: 100.0). Frequent SCD-related emergency department visits/hospital admissions and the adverse effect of SCD on patients’ social lives had a significant negative impact on SF-36 scores for all eight HRQoL domains (p ≤0.05). In addition, the impact of SCD on academic performance and a history of having been bullied due to SCD had a significant negative impact on SF-36 scores for several domains (p ≤0.05). Conclusion: Omani adult patients with SCD reported relatively poor HRQoL in several domains, with various factors found to have significant associations with poorer HRQoL. Healthcare providers and policy-makers should consider offering additional clinical, educational, and financial support to patients to enhance their HRQoL. Keywords: Sickle Cell Disease; Health-Related Quality of Life; Adults; Oman

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“…As highlighted in our study, several studies found that individuals with SCD can experience a wide range of complications that may negatively impact their HRQoL ( 8 , 9 , 35 , 36 ). The severity and frequency of these complications can vary from person to person with SCD ( 37 ). The complications of SCD include anemia, functional asplenia, strokes, and pain crises, which are caused by hemolysis and/or vascular occlusion ( 34 ).…”

Section: Discussionmentioning

confidence: 99%

Predictors of health-related quality of life in a large cohort of adult patients living with sickle cell disease in France: the DREPAtient study

Yaya,

Pourageaud,

Derbez

et al. 2024

Front. Public Health

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BackgroundSickle cell disease (SCD) is an inherited autosomal recessive disorder exhibiting a range of symptoms and acute and/or chronic complications that affect the quality of life. This study aimed to assess health-related quality of life (HRQoL) and to identify the associated factors in adult patients with SCD in France.MethodsDREPAtient is a cross-sectional, multicenter study conducted from June 2020 to April 2021 in France and in certain French overseas territories where SCD is highly prevalent. Sociodemographic and clinical data were collected online. HRQoL was assessed by the French version of the 36-Item Short Form Survey (SF-36) questionnaire. HRQoL determinants were identified using multivariable linear regression analysis.ResultsIn total, 570 participants were included, mostly women (68.9%), with a mean age of 33.3 (±10.7) years. The highest mean score HRQoL was found in the Physical functioning domain (67.5 ± 21.8) and the lowest mean score in the General Health perception domain (37.7 ± 20.3). The mean score of the physical composite (PCS) and mental composite (MCS) of SF-36 summary scores was 40.6 ± 8.9 and 45.3 ± 9.8, respectively. Participants receiving oxygen therapy (β = −3.20 [95%CI: −5.56; −0.85]), those with a history of femoral osteonecrosis (−3.09 [−4.64; −1.53]), those hospitalized for vaso-occlusive crisis (VOC) or acute chest syndrome (ACS) (−2.58 [−3.93; −1.22]), those with chronic complications (−2.33 [−4.04; −0.62]), female participants (−2.17 [−3.65; −0.69]), those with psychological follow-up (−2.13 [−3.59; −0.67]), older participants (−1.69 [−3.28; −0.09]), and those receiving painkillers (−1.61 [−3.16; −0.06]) reported worse PCS score. By contrast, those who had completed secondary or high school (4.36 [2.41; 6.31]) and those with stable financial situation (2.85 [0.94, 4.76]) reported better PCS scores. Worse MCS scores were reported among participants with psychological follow-up (−2.54 [−4.28; −0.80]) and those hospitalized for VOC/ACS in the last 12 months (−2.38 [−3.99; −0.77]), while those who had relatives’ support (5.27 [1.92; 8.62]) and those with stable financial situation (4.95 [2.65; 7.26]) reported better MCS scores.ConclusionAdults with major SCD reported poor physical and mental HRQoL scores. Hospitalization for VOC/ACS, chronic complications, use of painkillers, perceived financial situation, and support from relatives are important predictors of HRQoL in SCD patients. Interventions to improve HRQoL outcomes SCD should be considered.

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Quality of Life in Sickle Cell Disease

Cited by 7 publications

References 46 publications

Analysis of the 2007–2018 National Health Interview Survey (NHIS): Examining Neurological Complications among Children with Sickle Cell Disease in the United States

Analysis of the 2007–2018 National Health Interview Survey (NHIS): Examining Neurological Complications among Children with Sickle Cell Disease in the United States

Health-Related Quality of Life of Omani Adult Patients with Sickle Cell Disease at the Sultan Qaboos University Hospital

Predictors of health-related quality of life in a large cohort of adult patients living with sickle cell disease in France: the DREPAtient study

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