Health-related quality of life among Ebola survivors in Sierra Leone: the role of socio-demographic, health-related and psycho-social factors

Background Evidence of how social factors affect the health-related quality of life (HRQoL) of Ebola virus disease (EVD) survivors is limited. Our study explores the association between socio-demographic, health-related and psycho-social (stigma) factors and EVD survivors' health-related quality of life (HRQoL) in Sierra Leone. Methods We conducted a nationwide cross-sectional study among 358 EVD survivors between January and August 2018. We used a multistage sampling method to recruit EVD survivors, and the RAND 36-Item Health Survey item was used to assess the HRQoL. Data were analysed using descriptive statistics and multiple linear regression. Results When comparing by each dimension in relation to their respective summary scores, role limitation physical [0.00 (50.00)] and role limitation emotional [0.00 (33.33)] were the most affected physical health and mental health domains among EVD survivors respectively. EVD survivors who were older (β = − 3.90, 95% CI − 6.47 to − 1.32, p = 0.003), had no formal education (β = − 2.80, 95% CI − 5.16 to − 0.43, p = 0.021), experienced a unit increase in the number of post-Ebola symptoms (β = − 1.08, 95% CI − 1.74 to − 0.43, p < 0.001) and experienced a unit increase in enacted stigma (β = − 2.61, 95% CI − 4.02 to − 1.20, p < 0.001) were more likely to report a decreased level of physical health. EVD survivors who experienced a unit increase in the time spent in the Ebola treatment centre (β = − 0.60, 95% CI − 0.103 to − 0.18, p = 0.006) and those who experienced a unit increase in enacted Stigma were more likely to report decreased levels of mental health (β = − 1.50, 95% CI − 2.67 to − 0.33, p = 0.012). Conclusion Sociodemographic, health-related, and psycho-social factors were significantly associated with decrease levels of HRQoL. Our findings improve our understanding of the factors that might influence the HRQoL and suggest the need for EVD survivors to be provided with a comprehensive healthcare package that caters for their physical and mental health needs.

Depression, anxiety and health-related quality of life in paediatric intracranial germ cell tumor survivors

Background Little is known about depression and anxiety among paediatric intracranial germ cell tumour (iGCT) survivors. We aimed to evaluate the risk factors associated with depression, anxiety and health-related quality of life (HRQoL) in paediatric iGCT survivors. Methods We recruited 200 iGCT patients (and their parents) from Beijing Tiantan Hospital and assessed their HRQoL using the Paediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales. The Children’s Depression Inventory, Screen for Child Anxiety Related Emotional Disorders, and Symptom Checklist 90 were used to evaluate depression and anxiety. The results were analysed based on disease recurrence, tumour location and treatment strategies. Results Survivors with recurrent tumours had worse HRQoL scores than those with non-recurrent tumours. Patients with tumours involving both the suprasellar and basal ganglia regions had the worst HRQoL scores. A large proportion of survivors had depression or anxiety. Both depression and anxiety scores were highly correlated with the HRQoL emotional functioning scores. The parent proxy-reports (PPR) and child self-reports were highly correlated in all domains. Conclusions This study demonstrated the clinical factors affecting paediatric iGCT survivors’ depression, anxiety, and HRQoL. Therefore, psychological interventions should be implemented. It also suggests that the PedsQL PPR would be helpful for routine screening.

Psychometric properties of self-reported measures of health-related quality of life in people living with HIV: a systematic review

Objective To identify and assess the psychometric properties of patient-reported outcome measures (PROMs) of health-related quality of life (HRQoL) in people living with HIV (PLWH). Methods Nine databases were searched from January 1996 to October 2020. Methodological quality was assessed by using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) Risk of Bias Checklist. We used the COSMIN criteria to summarize and rate the psychometric properties of each PROM. A modified Grading, Recommendations, Assessment, Development, and Evaluation (GRADE) system was used to assess the certainty of evidence. Results Sixty-nine studies reported on the psychometric properties of 30 identified instruments. All studies were considered to have adequate methodological quality in terms of content validity, construct validity, and internal consistency. Limited information was retrieved on cross-cultural validity, criterion validity, reliability, hypothesis testing, and responsiveness. High-quality evidence on psychometric properties was provided for the Medical Outcomes Study HIV Health Survey (MOS-HIV), the brief version of the World Health Organization's Quality of Life Instrument in HIV Infection (WHOQoL-HIV-BREF), 36-Item Short Form Survey (SF-36), Multidimensional Quality of Life Questionnaire for Persons with HIV/AIDS (MQoL-HIV), and WHOQoL-HIV. Conclusions The findings from the included studies highlighted that among HIV-specific and generic HRQoL PROMs, MOS-HIV, WHOQoL-HIV-BREF, SF-36, MQoL-HIV, and WHOQoL-HIV are strongly recommended to evaluate HRQoL in PLWH in research and clinics based on the specific aims of assessments and the response burden for participants.

Pediatric quality of life multidimensional fatigue scale (PedsQL-MFS) detects the effects of a 3-week Inpatient body weight reduction program for children and adolescents with obesity

Background Fatigue is a frequent complaint amongst children and adolescents with obesity, and it interferes with adherence to dietary and exercise regimes that could reduce obesity. The present study evaluated the effect of an inpatient 3-week body weight reduction program on body weight and fatigue. Method One hundred children and adolescents with obesity (64% female; aged 11–18 years) undertook an inpatient program of personalized diet, daily exercise, education, and counselling. Results The sample evidenced a mean reduction in body mass (females: ΔM = 4.3 (sd = 2.1) kg, p < .001), males: ΔM = 6.2 (sd = 2.6) kg, p < .001), BMI standard deviation score (females: ΔM = 0.17 (sd = 0.07), males: ΔM = 0.24 (sd = 0.08), p < .001) and fatigue (females: ΔM = 7.8 (sd = 9.7), males: ΔM = 5.0 (sd = 6.9), p < .001) as measured by the Pediatric Quality of Life Multidimensional Fatigue Scale (PedsQL-MFS) and improvements on the Attention problems subscale of the Youth Self Report (total sample: ΔM = 0.89 (sd = 2.44), p < .001). Reliable change analyses revealed fatigue changes were achieved by up to 34% females and 17% males, but the majority did not achieve reliable change and changes in fatigue were not correlated with changes in body mass. Conclusions The program achieved clinically significant improvements in some children and adolescents. Future studies should explore predictors of treatment responsiveness. Trial registration Observational study. Not registered.

Development and measurement properties of the AxEL (attitude toward education and advice for low-back-pain) questionnaire

Introduction Clinician time and resources may be underutilised if the treatment they offer does not match patient expectations and attitudes. We developed a questionnaire (AxEL-Q) to guide clinicians toward elements of first-line care that are pertinent to their patients with low back pain. Methods We used guidance from the COSMIN consortium to develop the questionnaire and evaluated it in a sample of people with low back pain of any duration. Participants were recruited from the community, were over 18 years and fluent in English. Statements that represented first-line care were identified. Semantic scales were used to measure attitude towards these statements. These items were combined to develop the questionnaire draft. Construct validity was evaluated with exploratory factor analysis and hypotheses testing, comparing to the Back Beliefs Questionnaire and modified Pain Self-Efficacy Questionnaire. Reliability was evaluated and floor and ceiling effects calculated. Results We recruited 345 participants, and had complete data for analysis for 313 participants. The questionnaire draft was reduced to a 3-Factor questionnaire through exploratory factor analysis. Factor 1 comprised 9 items and evaluated Attitude toward staying active, Factor 2 comprised 4 items and evaluated Attitude toward low back pain being rarely caused by a serious health problem, Factor 3 comprised 4 items and evaluated Attitude toward not needing to know the cause of back pain to manage it effectively. There was a strong inverse association between each factor and the Back Beliefs Questionnaire and a moderate positive association with the modified Pain Self-Efficacy Questionnaire. Each independent factor demonstrated acceptable internal consistency; Cronbach α Factor 1 = 0.92, Factor 2 = 0.91, Factor 3 = 0.90 and adequate interclass correlation coefficients; Factor 1 = 0.71, Factor 2 = 0.73, Factor 3 = 0.79. Conclusion This study demonstrates acceptable construct validity and reliability of the AxEL-Q, providing clinicians with an insight into the likelihood of patients following first-line care at the outset.

Anxiety disorders in patients with noncardiac chest pain: association with health-related quality of life and chest pain severity

Background Patients with noncardiac chest pain (NCCP) report more severe symptoms and lowered health-related quality of life when they present with comorbid panic disorder (PD). Although generalized anxiety disorder (GAD) is the second most common psychiatric disorder in these patients, its impact on NCCP and health-related quality of life remains understudied. This study describes and prospectively compares patients with NCCP with or without PD or GAD in terms of (1) NCCP severity; and (2) the physical and mental components of health-related quality of life. Methods A total of 915 patients with NCCP were consecutively recruited in two emergency departments. The presence of comorbid PD or GAD was assessed at baseline with the Anxiety Disorder Schedule for DSM-IV. NCCP severity at baseline and at the six-month follow-up was assessed with a structured telephone interview, and the patients completed the 12-item Short-Form Health Survey Version 2 (SF-12v2) to assess health-related quality of life at both time points. Results Average NCCP severity decreased between baseline and the six-month follow-up (p < .001) and was higher in the patients with comorbid PD or GAD (p < .001) at both time points compared to those with NCCP only. However, average NCCP severity did not differ between patients with PD and those with GAD (p = 0.901). The physical component of quality of life improved over time (p = 0.016) and was significantly lower in the subset of patients with PD with or without comorbid GAD compared to the other groups (p < .001). A significant time x group interaction was found for the mental component of quality of life (p = 0.0499). GAD with or without comorbid PD was associated with a lower mental quality of life, and this effect increased at the six-month follow-up. Conclusions Comorbid PD or GAD are prospectively associated with increased chest pain severity and lowered health-related quality of life in patients with NCCP. PD appears to be mainly associated with the physical component of quality of life, while GAD has a greater association with the mental component. Knowledge of these differences could help in the management of patients with NCCP and these comorbidities.

More often than not, we’re in sync: patient and caregiver well-being over time in stem cell transplantation

Background Hematopoietic stem cell transplantation (HSCT) is an aggressive medical procedure which significantly impacts the shared emotional well-being of patients and family caregivers (FC). Prior work has highlighted the significant overlap in well-being among patients and FCs; however, how this interdependence may change over the course of HSCT has received less attention. Methods We conducted secondary analyses of a supportive intervention delivered to 154 FCs of HSCT patients and examined relationships at baseline, 6 weeks, 3 and 6 months post-HSCT. Actor Partner Interdependence Modeling examined patient quality of life (QOL) and FC anxiety/depression. Results The data did not fit a multigroup approach limiting our ability to test intervention effects; however, bivariate analyses indicated FC depression significantly correlated to patient QOL at baseline (r = − .32), 6 weeks (r = − .22) and 6 months post-HSCT (r = − .34; p’s < .05); whereas FC anxiety was only correlated with patient QOL at the first two timepoints (p’s < .05). There was an unexpected, partner effect such that worse patient QOL at 6-weeks significantly related to lower FC depression at 3-months (B = .193; p = .026) and changed direction with patient QOL at 3-months being related to more FC depression at 6-months (B = − .187; p = .001). Conclusions These findings highlight the significant, yet nuanced, interdependence of patient QOL and FC well-being during HSCT. Specifically, greater interdependence was observed between patient QOL and FC depression compared to FC anxiety, suggesting potential treatment targets for patients and their families. Trial was registered at ClinicalTrials.gov Identifier: NCT02037568; first registered: January 16, 2014; https://clinicaltrials.gov/ct2/show/NCT02037568

Analysis of the psychometric properties of the Sense of Coherence scale (SOC-13) in patients with cardiovascular risk factors: a study of the method effects associated with negatively worded items

Purpose The objectives of this study were to analyze the psychometric properties of the Sense of Coherence scale (SOC-13), determine the role of the method effect in the performance of the instrument, and identify the relationship with health perception, quality of life, and sleep quality in patients at cardiovascular risk. Methods The final sample consisted of 293 patients at cardiovascular risk, with a mean age of 61.9 years (SD = 8.8), 49.8% of whom were women. The SOC-13, the Patient Health Questionnaire (PHQ-9), and the Medical Outcomes Study-Sleep Scale (MOS-Sleep) were administered. In addition, the participant's self-perceived health and quality of life were also evaluated. All analyses were carried out with SPSS 26.0 and EQS 6.1 statistical software. Results The results showed adequate reliability for the SOC-13, with a Cronbach's alpha of .789. The fit of the structures was not adequate in any of the cases (.26 to .62 for one factor, .26 to.73 for three factors, .20 to .54 for one second-order factor, and .25, .42, and .54 for three first-order factors). The three structure models showed an improved fit when adding a latent factor resulting from the method effect (.6 to .85 for one factor, .11 to.90 for three factors, and .11 to .96 for one second-order factor). Moreover, positive correlations were found with health perception, perceived quality of life, and perceived sleep quality. Conclusion The SOC-13 is a suitable instrument for patients with cardiovascular risk in Spain, and it is also an indicator of health perception, quality of life, and perceived quality of sleep. Control of the method effect improves the fit of the instrument’s structure. As a future direction, it is recommended to conduct new studies in this and other samples and using different versions of the SOC. Trial registration International Standard Randomized Controlled Trial Number: ISRCTN76069254, 08/04/2015 retrospectively registered.

Quality of life and challenges experienced by the surviving adults with transfusion dependent thalassaemia in Malaysia: a cross sectional study

Background Improvement in medical management has enabled transfusion dependent thalassaemia (TDT) patients to survive beyond childhood, building families, and contributing to the labour force and society. Knowledge about their adult life would provide guidance on how to support their needs. This study aims to explore the general well-being of adults with TDT, their employment status and challenges. Methods This study recruited 450 people with TDT, aged 18 and above, of both genders through all regional Thalassaemia societies in Malaysia and from the two participating hospitals, over five months in year 2016. A self-administered questionnaire including ‘Healthy Days Core Module’, WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. Results A total of 196 adults with TDT responded to the survey (43.6% response rate). Almost half (45%) had comorbidities and 9% suffered multiple complications: bone-related (13%), hormonal (12%), cardiac (3%) and infections (2%), resulting in 23% seeking treatment more than twice monthly. Within a month, they suffered from at least three days with poor physical and or mental health and their normal daily activities were disrupted up to three days. 36% were jobless and 38% of those with a job were receiving salaries below RM1000. The mean WHOQOL-BREF score (mean (SD)) was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Having days with mental issues, financial status, education level, ethnic and marital status were main factors affecting QOL scores. Open questions showed dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy. Conclusion The adults with TDT perceived their health as good and had less unhealthy days when compared with people with other chronic diseases. However, some perceived themselves to be facing more life disruption in a rather non-supportive community and that health services do not meet their needs. Future qualitative studies are needed to focus on their perceived needs and to look for more tailored supportive approaches.

Stress, pain, and work affiliation are strongly associated with health-related quality of life in parents of 14–15-year-old adolescents

Background For many adults, their role as a parent is a vital part of their lives. This role is likely to be associated with a parent’s health-related quality of life (HRQOL). The aim of this study was to explore the associations between gender, demographic and psychosocial variables, pain, and HRQOL in parents of 14–15-year-old adolescents. Methods This was a cross-sectional study that included 561 parents. Data on demographic, psychosocial variables and pain were collected using validated instruments. HRQOL was assessed using the RAND-36. Data were analysed using univariate and hierarchical multiple linear regression analyses. Results Four hundred and thirty-six (78%) mothers and 125 (22%) fathers with a mean age of 45 (SD = 5) years were included. Eighty-one per cent were married/cohabiting, 74% worked full time, and 50% had university education of more than 4 years. Almost one-third reported daily or weekly pain, and more than half (58%) reported using pain analgesics during the previous 4 weeks. Mothers reported significantly lower scores on self-efficacy, self-esteem and for all RAND-36 domains, including the physical component summary (PCS) and mental component summary (MCS) and experienced greater stress than fathers. Hierarchical regression analyses showed that working part-time (beta = 0.40) or full time (beta = 0.52) (reference: not working) had the strongest positive effect on PCS. Absence from work for > 10 days (beta = −0.24) (reference: no absence), short-term pain (beta = −0.14), chronic pain (beta = −0.37) (reference: no pain), and stress (beta = −0.10) had the strongest negative effects on PCS. High self-esteem (beta = 0.11) had the strongest positive effect, whereas stress (beta = −0.58) and absence from work for > 10 days (beta = −0.11) (reference: no absence) had the strongest negative effects on MCS. Conclusion Mothers reported significantly lower scores on self-efficacy, self-esteem, and HRQOL, and experienced greater stress than the fathers. A high proportion of parents reported pain. Pain, stress, and low work affiliation were strongly associated with decreased HRQOL in parents. We recommend that parents of adolescents should be provided guidance about coping with pain and stress, and facilitation of a strong work affiliation because these seem to be important to parents’ HRQOL.