Lower Mean Quality Of Life Scores Research Articles

Caregiver Quality of Life During Pediatric Influenza-Like Illness: A Cross-Sectional Study During the COVID-19 Pandemic.

The objective of this study was to quantify the quality of life (QoL) of caregivers with children with influenza-like illnesses (ILI) and to identify factors associated with worse QoL. This was a cross-sectional cohort study of caregivers in a pediatric emergency department with previously healthy young children with ILI. The primary outcome was caregiver QoL. Additional measures included health literacy, social support, and caregiver health status. Two hundred and eighty-one caregivers completed the study. And 41% reported overall QoL was worse during their child's illness. The median QoL score was 3.8 [3.1, 4.6] in a 7-point scale. Illness duration was associated with worse overall QoL score (0.128 worse for each additional day of illness). The median emotions domain score was 2.5 [1.5, 4.0], the worst of any domain. Caregivers who perceived worse illness severity had lower emotions domain scores (2.61 vs 6.00, P = .0269). Caregivers with adequate literacy had lower mean QoL scores (3.08 vs 4.44, P < .0001). Childhood illnesses worsen caregiver QoL. Factors associated with worse QoL were perception of illness severity and duration. Addressing caregiver QoL could mitigate the impact of childhood acute illnesses on caregiver wellbeing.

“It was terrible, I didn’t sleep for two years”: A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life

Background: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. Aim: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers’ wellbeing in the context of caregiver health and live-in status. Design: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. Setting/participants: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. Results: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described “fair” or “poor” sleep quality, with “interrupted” sleep and frequent night-waking due to “on-call” “vigilance” and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. Conclusion: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Physical Function, Psychosocial Status, and Symptom Burden Among Adults with Plasma Cell Disorders and Associations with Quality of Life.

BackgroundThe plasma cell disorders (PCDs), multiple myeloma (MM), and light-chain amyloidosis (AL) are disproportionately diseases of older adults, whose care may be complicated by frailty associated with advancing age. We sought to evaluate the prevalence of functional deficits and symptoms in a cohort of persons with PCDs and associations of demographic, disease-related, functional, and psychosocial measures with quality of life (QoL).Patients and MethodsAdults with PCDs were recruited into an observational registry in 2018-2020. Patients completed a functional assessment and European Organization for Research and Treatment of Cancer QoL questionnaire (QLQ-C30). Associations of covariates of interest with QoL were evaluated via univariate linear regression.ResultsAmong 121 adults, the mean age was 68.6. Diagnoses were 74% MM, 14% AL, 7% both MM and AL, and 5% other PCDs. The median time from diagnosis was 34.9 months. Median lines of therapy were 2, with 11% having received ≥4th-line therapy.Patients with functional deficits had lower mean QoL scores: dependence in IADLs (66.3 vs. 79.9, P = .001) and recent falls (56.7 vs. 76.8, P = .001). Patients ≤6 months from diagnosis had lower QoL (66.7) than those ≥2 years from diagnosis (77.3, P = .03). However, patients on later lines of therapy (≥4th-line) had lower QoL (62.2) than those on 1st-line treatment (76.0, P = .04).ConclusionsPatients with physical impairments and more advanced PCDs had lower QoL than those without deficits or earlier in their disease course. Early identification of physical impairments may facilitate interventions that mitigate these deficits and thereby improve QoL for patients with PCDs.

Implications of multimorbidity patterns on health care utilisation and quality of life in middle-income countries: cross-sectional analysis.

BackgroundPast studies have demonstrated how single non-communicable diseases (NCDs) affect health care utilisation and quality of life (QoL), but not how different NCD combinations interact to affect these. Our study aims to investigate the prevalence of NCD dyad and triad combinations, and the implications of different NCD dyad combinations on health care utilisation and QoL.MethodsOur study utilised cross-sectional data from the WHO SAGE study to examine the most prevalent NCD combinations in six large middle-income countries (MICs). Subjects were mostly aged 50 years and above, with a smaller proportion aged 18 to 49 years. Multivariable linear regression was applied to investigate which NCD dyads increased or decreased health care utilisation and QoL, compared with subjects with only one NCD.ResultsThe study included 41 557 subjects. Most prevalent NCD combinations differed by subgroups, including age, gender, income, and residence (urban vs rural). Diabetes, stroke, and depression had the largest effect on increasing mean number of outpatient visits, increasing mean number of hospitalisation days, and decreasing mean QoL scores, respectively. Out of the 36 NCD dyads in our study, thirteen, four, and five dyad combinations were associated with higher or lower mean number of outpatient visits, mean number of hospitalisations, or mean QoL scores, respectively, compared with treating separate patients with one NCD each. Dyads of depression were associated with fewer mean outpatient visits, more hospitalisations, and lower mean QoL scores, compared to patients with one NCD. Dyads of hypertension and diabetes were also associated with a reduced mean number of outpatient visits.ConclusionsCertain NCD combinations increase or decrease health care utilisation and QoL substantially more than treating separate patients with one NCD each. Health systems should consider the needs of patients with different multimorbidity patterns to effectively respond to the demands on health care utilisation and to mitigate adverse effects on QoL.

Quality of life among parents of South African children with autism spectrum disorder.

To describe the quality of life (QOL) of South African parents caring for children with autism spectrum disorder (ASD) as compared with parents of typically developing (TD) children from the same community. A cross-sectional study was done evaluating the QOL of parents of 52 children (26 parents of children with ASD versus 26 parents of TD children) using a structured measure, (World Health Organization Quality of Life Assessment-BREF). The mean age of the children with ASD was 64.9 months (SD 14.5) versus 60.1 months (SD 13.5) for TD group. There was a male predominance among group of children with ASD (48 boys, four girls). The mean parental age of the ASD group was 32.9 years (SD 7.8) compared with 33.8 years (SD 6.8) for the TD group. As compared with parents of the TD children, parents of children with ASD had lower mean QOL scores in the four QOL domains: physical, psychological, social and environmental health (p<0.0001). the domain where the discrepancy between groups was greatest was the physical domain Where the mean score was 52.1 (SD 18.7) in the ASD group and 92 (SD 10.4) in the TD group. Lower income, severity level of ASD and lack of access to school placement of children with ASD were found significantly associated with parents' QOL domains. QOL of parents of children with ASD is significant lower than that of the parents of their TD peers across all domains and is an important component in management of the family which needs to be explored and addressed.

Olfactory dysfunction and quality of life in patients with transfusion-dependent thalassemia.

Transfusion-dependent thalassemia (TDT) is a group of thalassemia syndromes that require regular blood transfusions for survival. It is unknown whether the sense of smell of patients with TDT is affected, and if so, whether smell loss has an adverse effect on quality of life (QOL). Olfactory thresholds were measured using Snap & Sniff® wands. QOL was assessed via the Short Form-36 (SF-36) questionnaire. Forty-two TDT patients from the Thalassemia Center in Istanbul Medical Faculty were tested (mean age 26.6years), along with 42 healthy controls (mean age 28.0years). Mean olfactory sensitivity was lower in the TDT patients than the controls (p<0.0001). TDT was associated with lower mean QOL scores on the domains of physical function (p<0.0001), physical role limitation (p=0.011), and general health (p<0.0001). Within the TDT group, significant correlations were present between the threshold scores and physical function, physical role limitation, emotional role limitation, and general health. Patients with TDT are less sensitive to odors than healthy controls and the lower olfactory test scores are related to lower quality of life, suggesting that decreased smell function is an additional complication of this disease.

Abstract 9979: Health-Related Quality of Life in Children With Marfan Syndrome

Background: Marfan syndrome (MFS) is an autosomal dominant disorder that affects the heart, aorta, eyes, skeleton, lungs, and other organs. Objective: To assess quality of life (QL) in a large multicenter cohort of children with MFS. Methods: The Pediatric Quality of Life Inventory (PedsQL) was administered to 256 subjects with MFS ages 5-18 years as an ancillary study to the Pediatric Heart Network’s Marfan Trial, which compared the effects of atenolol vs. losartan on aortic root growth. PedsQL scores were compared to population norms by one-sample t-tests. Scores &gt; 1 SD below the population sample mean represent at-risk status for impaired health-related QL. The impact of treatment arm (atenolol vs. losartan), severity of clinical features, and patient-reported symptoms on QL was assessed by general linear models. Results: The subjects had a mean age of 11.8±3.9 years and were 62% male, 84% white, and 88% non-Hispanic. Mean PedsQL scores for MFS subjects were significantly lower than population norms. Overall, scores were in the impaired range for physical QL and psychosocial QL in 34% and 27% of subjects, respectively. QL across multiple domains correlated negatively with frequency of patient-reported symptoms (r=0.32-0.40, p&lt;.0001). Subjects with a reported neurodevelopmental disorder (mainly learning disability, attention deficit disorder, and/or hyperactivity) had lower mean QL scores (5.5-7.4 lower, p&lt;.04). There were no significant differences in QL scores between treatment arms. We found no significant association between QL and aortic root z-score, extent of skeletal involvement, or presence of ectopia lentis. Conclusions: Children with MFS are at risk for impaired QL. Higher number of patient-reported symptoms had the greatest negative impact on QL, rather than treatment arm or severity of cardiac, skeletal, or ocular findings. Future interventions to address patient symptoms and neurodevelopmental disorders could improve QL for children with MFS.

Burden of disease in multiple sclerosis patients with spasticity in Germany: mobility improvement study (Move I)

To describe the current management patterns of multiple sclerosis (MS) patients with spasticity in Germany and the impact of MS spasticity on quality of life (QoL) and associated costs. Non-interventional, multicentre, cross-sectional and retrospective burden-of-disease study including 414 MS patients with spasticity (age from 25 to 80 years) from 42 clinical practices across Germany. All patients were diagnosed with MS-related spasticity based on neurological examination at least 12 months before inclusion in the study. Three different forms were completed on different aspects of the disease: the patient questionnaire, the chart documentation form and the physician questionnaire. Mild, moderate and severe spasticity were found in 27.3, 44.0 and 28.7 % of patients, respectively. Associated symptoms and QoL scores were worse in patients with higher degrees of spasticity. In particular, higher mean scores for sleep impairment (mild vs. severe, 2.1 vs. 4.3), mean spasm count (3/day vs. 10.1/day), mean WEIMuS fatigue score (15.8 vs. 19.8), increased walking time (9.6 vs. 20.2 s) and lower mean QoL scores (MSQoL-54 physical subscale, 54.9 vs. 39.5; EQ-5D, 0.60 vs. 0.30) were reported in patients with severe spasticity in comparison to patients with mild spasticity. Patient management mainly comprised physiotherapy (mild vs. severe, 65.5 vs. 85.7 %) and medication (84.2 vs. 64.8 %) with baclofen. The average cost for patients with mild spasticity was €2,268/year, increasing to €8,688/patient/year for patients with severe spasticity. The health insurance costs showed the same trend. MS patients with spasticity suffer a significant burden because of resulting disabilities and reduced QoL, especially in cases of severe spasticity. Moreover, spasticity causes high costs that increase with increasing severity.

Evaluation of factors affecting post-treatment quality of life in oral and oropharyngeal cancer patients primarily treated with curative surgery: an exploratory study

The aim was to explore the impact of important clinico-demographic factors on the post-treatment quality of life (QOL) in surgically treated oral and oropharyngeal cancer patients. 63 consecutive follow-up oral and oropharyngeal cancer patients treated primarily with surgery were recruited. 55 patients sent the completed questionnaires and finally included in this study. QOL and important sub-domains of the QOL were assessed. Mean QOL scores (SD) were computed, level of significance was set at P < 0.05. The mean composite QOL score and standard deviation (SD) for oral and oropharyngeal cancer patients were 76.6 (15.2) and 73.4 (13.9), respectively. Patients with higher T-stage (T3 and T4) and higher overall-stage (III and IV) had lower mean QOL scores as against early T (T1 and T2) and overall early-stage (I and II); mean scores (SD) 64.3 (13.6) and 72.3 (13.8), and 76.6 (13.6) and 81.7 (14.1), respectively. Younger patients had lower mean scores (SD) than older patients; mean QOL scores (SD) 69.7 (14.0) and 79.6 (SD), respectively. Patients with reconstruction had lower mean QOL scores as compared to those without reconstruction; mean scores (SD) 67.6 (16.0) and 77.4 (12.5), respectively. In conclusion, tumor-stage, overall-stage, age of patients, and reconstruction had a significant direct effect on the post-treatment QOL of oral and oropharyngeal cancer patients.