Sleep Problem Risk for Adolescents With Sickle Cell Disease: Sociodemographic, Physical, and Disease-related Correlates

Valrie, Cecelia R.; Trout, Krystal L.; Bond, K.; Ladd, Rebecca J.; Huber, Nichelle L.; Alston, Kristen; Sufrinko, Alicia; Everhart, D. Erik; Fuh, Beng

doi:10.1097/mph.0000000000001067

Cited by 17 publications

(11 citation statements)

References 47 publications

(71 reference statements)

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“…For minor subjects, our results showed no repercussions of SCD in terms of academic delay, but the consequences for children’s schooling and quality of life are real, as stated above [ 19 , 29 – 33 ]. A Dutch study compared the health-related quality of life (HRQoL) of children with SCD to that of healthy siblings [ 44 ].…”

Section: Discussionsupporting

confidence: 69%

“…In other studies, sickle pain was reported to negatively impact school attendance and functioning, sleep patterns, daily and social activities, health service use and health-related quality of life [ 19 , 29 – 33 ]. These studies highlighted that SCD could affect abilities of children and adolescents to concentrate because of fatigue and led to frequent school absenteeism due to symptoms, hospitalization or medical appointments.…”

Section: Discussionmentioning

confidence: 99%

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Descriptive analysis of sickle cell patients living in France: The PHEDRE cross-sectional study

et al. 2021

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Background Sickle cell disease (SCD) induces chronic haemolytic anaemia and intermittent vaso-occlusion that results in tissue ischaemia causing acute, severe pain episodes that can lead to frequent hospitalizations. These consequences can have repercussions on family, social, school and/or professional life. Here, we present some of the results of the PHEDRE study (Pharmacodépendance Et DREpanocytose—drug dependence and sickle-cell disease), which is the largest study of patients with SCD in France. This paper intends to describe characteristics of the French SCD population. We also aimed to assess the impact of the disease on the lives of patients using objective and subjective variables. Methods The PHEDRE study was a national multicentric observational study. Adults, adolescents and children with a confirmed SCD diagnosis were included in the study by their referring doctor. Then, they were interviewed by phone about their socioeconomic status, about the impact of the disease on their lives and about their analgesic and psychoactive drug use. Results The study population consisted of 872 patients (28% were minors). Seventy-two percent of adults were active, and all minors were in school. Many patients presented criteria of severe SCD. Seventy-five percent were homozygous SS, 15% were double heterozygotes SC and 8% were heterozygotes Sβthal, 87% received specific treatment, 58% were hospitalized at least once for vaso-occlusive crisis in the past 12 months, and the number of analgesic drugs taken averaged 3.8. Seventy-five percent of patients reported academic or professional consequences related to their SCD, and 52% reported social consequences. Conclusions The impact of SCD on patients’ lives can be significant, nevertheless their social integration seems to be maintained. We highlighted respect of recommendations regarding analgesic treatments and only a few patients used tobacco, alcohol or cannabis. Trial registration Clinical Trials, NCT02580565; https://clinicaltrials.gov/ Registered 16 October 2015.

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Section: Discussionsupporting

confidence: 69%

Section: Discussionmentioning

confidence: 99%

Descriptive analysis of sickle cell patients living in France: The PHEDRE cross-sectional study

et al. 2021

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“…38 They also may have disturbed sleep or sleep-disordered breathing. [39][40][41][42][43][44] Fatigue may be severe, with severe anemia, and correlates substantially not only with pain but with sleep quality, anxiety, depression, and stress 45 and neurocognitive function and decreased quality of life. 46 Poor interpersonal relationships at work have been reported to be a larger contributor to unemployment than physical health in individuals with SCD.…”

Section: Discussionmentioning

confidence: 99%

Indirect Economic Burden of Sickle Cell Disease

et al. 2021

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This study aimed to quantify the indirect costs of sickle cell disease in the United States.Methods: Adult patients from a sickle cell disease clinic at an urban academic healthcare system completed an adapted Institute for Medical Technology Assessment Productivity Cost Questionnaire related to the impact of their disorder on absenteeism, presenteeism, ability to contribute through unpaid work outside of employment, and other aspects of life. Additional data were collected from patient records about each participant's genotype, total hemoglobin level, and pain level.Results: Of the 192 individuals, 187 who completed the survey reported experiencing vaso-occlusive crisis pain events during the last year that negatively affected their productivity at work and in daily roles. Three-fourths of respondents reported impairment in their ability to complete everyday tasks, such as caring for children, running errands, doing housework, shopping for groceries, and volunteer (unpaid) work. Only 30% of respondents reported being employed or self-employed. Of those employed, estimated costs of absenteeism and presenteeism attributable to pain events averaged $15 103 per person annually. Estimated total annual losses in unpaid work productivity averaged $3 145 862 for the study respondents and another $2 870 652 for their caregivers.Conclusions: Sickle cell disease affected the work productivity, nonwork productivity, and the daily lives of adults seen with the disorder in an academic medical center.

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“…These associations are found in SCA as well [ 14 , 64 , 65 ]. Currently, only a couple of cross-sectional studies have compared SCA to ethnicity matched controls and found individuals with SCA to have lower TST [ 36 , 37 , 38 ]. However, the relationships between sleep, sickle cell and health issues need further investigation.…”

Section: Discussionmentioning

confidence: 99%

“…Both found a non-significant lower TST in children with SCA compared to controls, with one study showing a 17 min difference [ 36 ] and the other a 24 min difference [ 37 ]. However, one actigraphy study found a significant difference in adolescents with SCA (aged 12–17 years) compared to ethnicity-matched controls, with SCA sleeping 1 h and 15 min longer [ 38 ]. There appears to be a discrepancy between PSG, actigraphy and questionnaire data, with a contrast between in-hospital PSG studies and questionnaires and actigraphy reflecting the situation at home.…”

Section: Introductionmentioning

confidence: 99%

Developmental Profile of Sleep and Its Potential Impact on Daytime Functioning from Childhood to Adulthood in Sickle Cell Anaemia

Kölbel

Kirkham

Dimitriou³

2020

Brain Sciences

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Young individuals with sickle cell anaemia (SCA) experience sleep disturbances and often experience daytime tiredness, which in turn may impact on their daytime functioning and academic attainment, but there are few longitudinal data. Methods: Data on sleep habits and behaviour were taken on the same day as an in-hospital polysomnography. This study assesses the developmental sleep profiles of children and young adults aged 4–23 years old with SCA. We examined retrospective polysomnography (PSG) and questionnaire data. Results: A total of 256 children with a median age of 10.67 years (130 male) were recruited and 179 returned for PSG 1.80–6.72 years later. Later bedtimes and a decrease in total sleep time (TST) were observed. Sleep disturbances, e.g., parasomnias and night waking, were highest in preschool children and young adults at their first visit. Participants with lower sleep quality, more movement during the night and increased night waking experienced daytime sleepiness, potentially an indicator of lower daytime functioning. Factors influencing sleep quantity included age, hydroxyurea prescription, mean overnight oxygen saturation, sleep onset latency, periodic limb movement, socioeconomic status and night waking. Conclusion: Sleep serves an important role for daytime functioning in SCA; hence, quantitative (i.e., PSG for clinical symptoms, e.g., sleep-disordered breathing, nocturnal limb movement) and qualitative (i.e., questionnaires for habitual sleep behaviour) assessments of sleep should be mutually considered to guide interventions.

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Sleep Problem Risk for Adolescents With Sickle Cell Disease: Sociodemographic, Physical, and Disease-related Correlates

Cited by 17 publications

References 47 publications

Descriptive analysis of sickle cell patients living in France: The PHEDRE cross-sectional study

Descriptive analysis of sickle cell patients living in France: The PHEDRE cross-sectional study

Indirect Economic Burden of Sickle Cell Disease

Developmental Profile of Sleep and Its Potential Impact on Daytime Functioning from Childhood to Adulthood in Sickle Cell Anaemia

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