Dataset Information

Inpatient palliative care use by patients with sickle cell disease: a retrospective cross-sectional study.

ABSTRACT:

Objective

Sickle cell disease (SCD) is a highly morbid condition notable for recurrent hospitalisations due to vaso-occlusive crises and complications of end organ damage. Little is known about the use of inpatient palliative care services in adult patients with SCD. This study aims to evaluate inpatient palliative care use during SCD-related hospitalisations overall and during terminal hospitalisations. We hypothesise that use of palliative care is low in SCD hospitalisations.

Design

A retrospective cross-sectional study using data from the National Inpatient Sample from 2008 to 2017 was conducted.

Setting

US hospitals from 47 states and the District of Columbia.

Participants

Patients >18 years old hospitalised with a primary or secondary International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) or ICD-10-CM diagnosis of SCD were included.

Primary and secondary outcome measures

Palliative care service use (documented by ICD-9-CM and ICD-10-CM diagnosis codes V66.7 and Z51.5).

Results

987 555 SCD-related hospitalisations were identified, of which 4442 (0.45%) received palliative care service. Palliative care service use increased at a rate of 9.2% per year (95% CI 5.6 to 12.9). NH-black and Hispanic patients were 33% and 53% less likely to have palliative care services compared with NH-white patients (OR 0.67; 95% CI 0.45 to 0.99 and OR 0.47; 95% CI 0.26 to 0.84). Female patients (OR 0.40; 95% CI 0.21 to 0.76), Medicaid use (OR 0.40; 95% CI 0.21 to 0.78), rural (OR 0.47; 95% CI 0.28 to 0.79) and urban non-teaching hospitals (OR 0.61; 95% CI 0.47 to 0.80) each had a lower likelihood of palliative care services use.

Conclusion

Use of palliative care during SCD-related hospitalisations is increasing but remains low. Disparities associated with race and gender exist for use of palliative care services during SCD-related hospitalisation. Further studies are needed to guide evidence-based palliative care interventions for more comprehensive and equitable care of adult patients with SCD.

SUBMITTER: Nwogu-Onyemkpa E

PROVIDER: S-EPMC9386219 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

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Publications

Inpatient palliative care use by patients with sickle cell disease: a retrospective cross-sectional study.

Nwogu-Onyemkpa Eberechi E Dongarwar Deepa D Salihu Hamisu M HM Akpati Lois L Marroquin Maricarmen M Abadom Megan M Naik Aanand D AD

BMJ open 20220816 8

<h4>Objective</h4>Sickle cell disease (SCD) is a highly morbid condition notable for recurrent hospitalisations due to vaso-occlusive crises and complications of end organ damage. Little is known about the use of inpatient palliative care services in adult patients with SCD. This study aims to evaluate inpatient palliative care use during SCD-related hospitalisations overall and during terminal hospitalisations. We hypothesise that use of palliative care is low in SCD hospitalisations.<h4>Design ...[more]

PMID: 35973707

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Project description:IntroductionSickle cell disease (SCD) remains a major cause of childhood mortality and morbidity in Malawi. However, literature to comprehensively describe the disease in the paediatric population is lacking.MethodsA retrospective review of clinical files of children with SCD was conducted. Descriptive statistics were performed to summarise the data. χ2 or Fisher's exact test was used to look for significant associations between predictor variables and outcome variables (case fatality and length of hospital stay). Predictor variables that were significantly associated with outcome variables (p≤0.05) in a χ2 or Fisher's exact test were carried forward for analysis in a binary logistic regression. A multivariable binary logistic regression was used to identify covariates that independently predicted length of hospital stay.ResultsThere were 16 333 paediatric hospitalisations during the study period. Of these, 512 were patients with SCD representing 3.1% (95% CI: 2.9%- 3.4%). Sixty-eight of the 512 children (13.3%; 95% CI: 10.5% - 16.5%) were newly diagnosed cases. Of these, only 13.2% (95% CI: 6.2% - 23.6%) were diagnosed in infancy. Anaemia (94.1%), sepsis (79.5%) and painful crisis (54.3%) were the most recorded clinical features. The mean values of haematological parameters were as follows: haemoglobin (g/dL) 6.4 (SD=1.9), platelets (×109/L) 358.8 (SD=200.9) while median value for white cell count (×109/L) was 23.5 (IQR: 18.0-31.2). Case fatality was 1.4% (95% CI: 0.6% - 2.8%)and 15.2% (95% CI: 12.2% -18.6%) of the children had a prolonged hospital stay (>5 days). Patients with painful crisis were 1.7 (95% CI: 1.02 - 2.86) times more likely to have prolonged hospital stay than those without the complication.ConclusionAnaemia, sepsis and painful crisis were the most common clinical features paediatric patients with SCD presented with. Patients with painful crisis were more likely to have prolonged hospital stay. Delayed diagnosis of SCD is a problem that needs immediate attention in this setting. Although somewhat encouraging, the relatively low in-hospital mortality among SCD children may under-report the true mortality from the disease considering community deaths and deaths occurring before SCD diagnosis is made.

Project description:To assess the quality of life (QoL) of caregivers of children with sickle cell disease (SCD) and to determine the risk factors associated with poor QoL.A cross sectional study was conducted between 01 and 30 June 2015, in a tertiary care center in western Saudi Arabia to assess various dimensions of QoL by using TNO-AZL Questionnaire for Adult's Health-related Quality of Life (TAAQOL). A total 164 adult caregivers (aged 16 years or more) of children with SCD, who were regularly visiting the department were enrolled (refusal rate?=?61.6%). The questionnaire scores were transformed into 0-100 scale; with higher scores indicating less difficulty and better QoL Demographic, socioeconomic data and a satisfaction questionnaire regarding participants' lifestyle were collected and analyzed as risk factors for impaired QoL, by comparing different QoL dimensions' scores using independent t-test, Oneway ANOVA, or linear regression, as appropriate.Sixty-three caregivers were included; 79.4% were mothers, age range 21-71 years, 64.5% were from low social class receiving insufficient support and financial needs were unmet for considerable number of families. Analysis of QoL using TAAQOL showed that emotions (median [75th centile]?=?44.44 [66.67] for negative and 61.11 [72.22] for positive emotions), sleep quality (66.67 [91.67]) and sexual life (50.00 [83.33]) were the most affected dimensions. Professional achievement (91.67 [100]), cognitive skills (83.33 [100]), and social contact (100 [100]) were relatively preserved. Negative emotions were more marked in mothers and mostly predicted by satisfaction with social relations notably with partner (B?=?3.14, p?=?0.016), friends (B?=?2.51, p?=?0.015) and relatives (B?=?2.69, p?=?0.016). Positive emotions were predicted by the levels of satisfaction of the caregiver with his/her health (B?=?2.56, p?=?0.001), job achievement (B?=?4.54, p?=?0.001), living conditions (B?=?2.60, p?=?0.034) and the condition of the diseased child (B?=?2.55, p?=?0.011). A strong correlation was found between sleep quality and cognitive skills.There are notable financial and emotional burdens on the caregivers of children with SCD affecting various aspects of their QoL, which are likely to be impacted by the individual levels of social and professional achievement. Physicians and health authorities should give particular attention to the QoL of caregivers and families of children with SCD, to help them cope up with the disease and overcome its related psychological and financial impacts.

Project description:Background and aimsChildren with sickle cell disease (SCD) have an increased risk of multiple hemotransfusions and this can predispose them to elevated iron stores. The objectives of the study were to determine the extent of elevated iron stores and the associated risk factors in a population of steady-state SCD children in Ghana.MethodsThis cross-sectional study was conducted at the pediatric sickle cell clinic at the Komfo Anokye Teaching Hospital. Complete blood count and serum ferritin assay were performed for (n = 178) steady-state SCD children. Descriptive and multivariate logistic regression analysis were performed. Elevated iron stores were defined as serum ferritin levels >300 ng/ml. Statistical significance was considered at p < 0.05.ResultsThe mean (standard deviation) age of the participants was 9.61 (±4.34) years, and 51% of them were males. About 17% of SCD children had elevated iron stores and receiving at least three hemotransfusions during the last 12 months was strongly associated with elevated iron stores (p < 0.001). History of chronic hemotransfusion increased the odds of having elevated iron store (adjusted odds ratio [aOR] = 11.41; 95% confidence interval [CI] = 3.11-30.85; p < 0.001) but SCD patients on hydroxyurea treatment had reduced-odds of having elevated iron stores (aOR = 0.18; 95% CI = 0.06-0.602; p = 0.006). Moreover, red blood cell (Coef. = -0.84; 95% CI = -0.37, -1.32; p = 0.001), hemoglobin (Coef. = -0.83; 95% CI = -0.05, -1.61; p = 0.04), hematocrit (Coef. = -0.85; 95% CI = -0.08, -1.63; p = 0.03), mean cell volume (Coef. = 0.02; 95% CI = 0.01, 0.03; p = 0.001) and mean cell hemoglobin (Coef. = 0.04; 95% CI = 0.01, 0.07; p = 0.002) could significantly predict serum ferritin levels.ConclusionThe magnitude of elevated iron stores was high among children with SCD in steady-state. Red cell indices could provide invaluable information regarding the risk of elevated iron stores. SCD children who have a history of chronic hemotransfusion or had received at least three hemotransfusions in a year should be monitored for elevated iron stores.

Dataset Information

Inpatient palliative care use by patients with sickle cell disease: a retrospective cross-sectional study.

Objective

Design

Setting

Participants

Primary and secondary outcome measures

Results

Conclusion

Publications

Inpatient palliative care use by patients with sickle cell disease: a retrospective cross-sectional study.

Similar Datasets

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