HRQOL Scores Research Articles

Health-Related Quality of Life and Associated Factors Among Covid-19 Survivors. Experience from Ethiopian Treatment Centers.

BackgroundThe pandemic of the novel coronavirus (Covid-19), which is extremely stressful and has an adverse effect on people’s health-related quality of life (HRQoL), poses a serious threat to global public health. As a result, this study evaluated the health-related quality of life and associated factors among Covid-19 patients who were discharged from Ethiopian treatment centers.MethodsWe conducted a multi-center, cross-sectional study among 493 Covid-19 survivors who had been discharged from treatment centers between 1st January 2020, and 20th October 2021. We collected respondents’ data using validated Amharic version EuroQol 5-dimensional-5 levels (EQ-5D-5L) questionnaire along with medical records of the patients. Differences in HRQOL scores between patient subgroups were tested by Mann–Whitney U or Kruskal–Wallis test, and the multivariable betaMix regression was used to investigate factors associated with HRQOL scores.ResultsThe EQ-5D and VAS median score for Covid-19 survivors was 0.940 (IQR: 0.783–0.966) and 87 (IQR: 70–91) respectively. Overall, married individuals, old-aged, individuals who had low educational status, high monthly income, comorbidities, admitted to the Intensive care Unit, received intranasal oxygen care, and prolonged hospitalization had lower utility scores and EQ-VAS scores compared to their counterparts. In multivariate betaMix regression, respondents’ health status at admission, old age, chronic obstructive pulmonary disease, asthma, and hospital length of stay were significantly associated with the lower EQ-5D-Index value and EQ-VAS score.ConclusionWe found that Covid-19 infection had a persisting impact on the physical and psychosocial health of Covid-19 survivors. Age, having asthma and chronic obstructive pulmonary disease, having a worsening health state upon admission, and a prolonged hospital length of stay were significantly associated with the lower EQ-5D and EQ-VAS score. Therefore, the cost-effective psychological treatment such as cognitive behaviour therapy should be encouraged after hospitalization to improve the post-Covid-19 depression and fatigue.

Evaluation of Drug Related Problems in Patients with Type 2 Diabetes

Objective: Diabetic patients usually have co-morbidities requiring the use of multiple medications, making them more vulnerable in experiencing drug related problems (DRPs) that may affect their quality of life (QOL). The objective of this study was to asses DRP in type 2 diabetes (T2D) patients and factors associated with its occurrence and the DRPs that affect QoL. Methods: A cross-sectional study was conducted among T2D patients who were attending a tertiary care teaching hospital, Lebanon. The identification and assessment of DRPs were based on the Pharmaceutical Care Network Europe tool version 8.03. The QoL was assessed using Health Related Quality of Life Brief Clinical Inventory. Results: The total number of DRP was 313 with a mean of 2.05 ± 1.03 per patient. The most common DRPs encountered were adverse drug event (31.3%), untreated symptoms or indication ( 10.54%), effect of drug treatment not optimal (7.34%) and high drug dose (7.34%). Logistic regression showed that polypharmacy and several comorbidities such as stroke, dyslipidemia, heart failure, coronary artery disease, renal and liver impairment were common factors significantly associated with different types of DRPs (p<0.005). The risk of having problems” No effect of drug treatment”,” Effect of drug treatment not optimal” and “Adverse drug event (possibly) occurring” was significantly increased in patients with abnormal HbA1c. The use of sulfonylurea increases the risk of ” Inappropriate duplication of therapeutic group” (p= 0.047). Following a low sugar diet showed to decrease the probability of having problem” Patient uses/takes more drug than prescribed” by 99.99%. On the other hand, insulin administration showed to increase 7.63 times this probability (p=0.006). The average HRQoL was 40 ± 9.900. Linear regression showed that problems “Untreated indication and “Patient uses unnecessary drug” were associated with poor QoL score. Having a medical insurance was found to be associated with better HRQoL scores. Conclusion: Early identification of DRPs and factors associated with them are essential to pre- vent and resolve them in diabetic patients by engaging clinical pharmacist, which may ultimately improve patient’s QoL

Health-related quality of life of multiple myeloma patients after the first-line treatment: results of a prospective cohort study

Objective: The aim of this study was to evaluate whether there was an improvement or a deterioration of health-related quality of life (HRQoL) of multiple myeloma patients (MM), and to assess the associated factors with HRQoL after 12 months of treatment. Methods: We performed a prospective cohort study with MM patients in first-line treatment from public and private onco-hematology health services in a Brazilian metropolis. HRQoL, socio-demographic and clinical variables were obtained by interviews and review of medical charts. HRQoL and peripheral neuropathy (PN) were collected through validated instruments (QLQ-C30, QLQ-MY20, CINQ). Medians of the HRQoL scores, obtained at baseline and follow-up interviews, were compared. Median HRQOL scores at follow-up were compared by variables. The improvement or deterioration in HRQoL and the association with variables were measured. Results: Thirty-three patients completed the follow-up, with ISS III (25.0 %), on polypharmacy (72.2 %), using a thalidomide+bortezomib-based regimen as first-line (19.4 %), and median age of 66.5 years. HRQoL Summary score, Functioning, Symptom scales, and Future Perspective scores were improved between periods (p<0.05). Patients who were on polypharmacy, with severe PN, and with ISS III had deterioration in HRQoL; younger patients had improvement and older patients had deterioration in HRQoL (p<0.05). Conclusions: Our study showed that first-line treatment improved HRQoL of patients in the following QLQ-C30 scales: Summary score, Role functioning, Emotional functioning, Fatigue, Pain, and Constipation; and in QLQ-MY20, Future perspective was improved. Our study shows the importance of using patient-reported outcomes during MM treatment.

Quality of life in preadolescent orthodontic patients before and after secondary alveolar bone grafting

We evaluated the effects of secondary bone grafting (SBG) on oral health-related and generic health-related quality of life (OHRQOL and HRQOL, respectively) in preadolescent orthodontic patients with alveolar bone defects. We divided 101 orthodontic patients aged 8-10 years into 3 groups: 39 general orthodontic patients, 18 patients with orofacial clefts who did not require SBG, and 44 patients with alveolar defects who required SBG using particulate cancellous bone and marrow obtained from the iliac crest. The participants completed the self-report Child Perceptions Questionnaire (CPQ) and Paediatric Quality of Life Inventory (version 4.0) for OHRQOL and HRQOL, respectively, and their scores were assessed. The quality of life (QOL) of patients who required SBG was examined before, 1 month, and 6 months after SBG. The relationships between OHRQOL or HRQOL and potential patient factors were also evaluated. Physical HRQOL subscale scores worsened 1 month after SBG, whereas the total OHRQOL and HRQOL scores before and after SBG showed no significant changes. OHRQOL and HRQOL showed no significant differences among the 3 groups before SBG. The presence of oronasal fistula was associated with poorer OHRQOL in patients with cleft lip and/or palate. SBG and orthodontic treatment had a relatively small impact on the QOL of the preadolescent children in this study. Understanding the influence of SBG and patient factors on QOL would enable better treatment and care for these patients.

Mental health indicators and their lifestyle associations in German students: a gender-specific multivariable analysis

BackgroundStatistics show that the number of received psychosocial counselling sessions remains at a constantly high level or has even increased since the COVID-19 pandemic situation in 2020. The objective of this work is to identify factors associated with students’ mental health to improve prevention and promotion in mental health at universities.MethodsThe analyses were based on a cross-sectional data set collected by an online survey among 1,842 students from a German University of Applied Sciences in 2014. Descriptive statistics as well as nine different multiple linear regression models were calculated with IBM® SPSS® Statistics software. Mental health indicators used were mental health-related quality of life (mental HRQOL), depression, and anxiety, which were analysed in a gender-specific manner.ResultsThe analyses showed that the mean of the mental HRQOL score of the SF-36 for the student sample (46.68) was lower than the values for German (48.76) or American (51.34) norm samples. A key finding was the differences in mental health indicators between male and female students. Women reported worse mental health status in comparison to men. Female gender (ß of -.09; p < 0.01), age (ß of -1.05; p < 0.01), underweight (ß of -.09; p < 0.05), smoking (ß of -.10; p < 0.05) and drug consumption (ß of -.15; p < 0.001) were negatively associated with mental health indicators. In our sample, a moderate consumption of alcohol within the female population (ß of .12; p < 0.01) and physical activity within the male sample (ß of .09; p < 0.05) were positively associated with mental health indicators.ConclusionThe gender-specific differences of students’ mental health and its associations could be an important result for counselling services at universities to adjust methods according to gender. Contrary to the general societal perception, students have lower mental health than a norm sample even before the pandemic. Due to the additional mental stress caused by the pandemic, it can be assumed that mental health problems have increased even more. Universities should therefore pay more attention to the mental health of their students.

A Study Protocol for the Management of Children With Juvenile Idiopathic Arthritis Based on ePROs.

BackgroundJuvenile idiopathic arthritis (JIA) is a common chronic rheumatic disease with no known cures, affecting children with the age of onset under 16 years. Patient-reported outcome (PRO) measures are an important basis for evaluating the impact of JIA and associated therapies, however, which is particular challenge in the pediatric setting. At present, no randomized controlled studies have investigated the effect and usability of ePROs symptom management for children with JIA.MethodsThis longitudinal, randomized, controlled trial will be carried out at outpatient and pediatric wards of the Shanghai Children's Medical Center affiliated to Shanghai Jiao Tong University School of Medicine. A total of one hundred children with JIA diagnosed according to the International League of Associations for Rheumatology (ILAR) patients are randomized to receive individualized symptom management based on ePROs or routine management. The primary outcome is the mean C-Ped-PROMIS T-scores of patients in the ePROs-based group and the control group. The secondary outcomes are the trajectories of C-Ped-PROMIS T-scores and HRQOL scores, and changing relationship between them. Data were collected at 5 time points: at enrollment (“baseline”) and at the time of follow-up visits scheduled at 1, 3, 6, and 12 months.DiscussionThe findings are expected to conclude that the symptom management based on ePROs for children with JIA can improve the symptom of JIA, and it is a feasible and effective way to monitor and intervene children with JIA.Clinical Trialhttp://www.chictr.org.cn/showproj.aspx?proj=132769; (ChiCTR2100050503)

Estimating population norms for the health-related quality of life of adults in southern Jiangsu Province, China

Although national health-related quality of life population norms had been published based on the EuroQol 5-Dimensions 5-levels scale, China is a vast country with diverse cultural and social development in various regions. Therefore, regional population norms may better reflect the health status of residents in a given area. The purpose of the study was to derive the HRQoL population norm for adult general population in southern Jiangsu Province using the EQ-5D-5L scale and explore potential influencing factors. The data were based on a cross-sectional survey conducted in Liyang City from March 2019 to July 2020. EQ-5D-5L utility scores based on Chinese value set and EQ-VAS scores were used to assess HRQoL. The Tobit regression model and generalized linear model were performed to identify the association among potential covariates and HRQoL. The means (95% confidence interval) of the EQ-5D-5L utility scores and EQ-VAS scores were 0.981(0.980–0.983) and 83.6(83.2–83.9), respectively. Younger people (≤ 40 years old) were more likely to experience problems with anxiety or depression. Additionally, women had lower HRQoL scores although multivariate analysis found no statistical difference between the sexes. Lower HRQoL was associated with advanced age, lower socioeconomic status, no spouse, lack of regular physical activities, smoking cessation, and chronic non-communicable diseases. Subjects who declared that they were afflicted by diseases presented significantly lower utility scores, ranging from 0.823 (0.766–0.880) for memory-related diseases to 0.978 (0.967–0.989) for hepatic diseases. Regional population norms of HRQoL are needed in the health economic study owing to the great socioeconomic differences across regions in China. The present study provides HRQoL population norms for adults in southern Jiangsu. These norm values could help policy makers better allocate limited health resources and prioritize service plans.

FC004: Improved Prediction of Hospitalization and Mortality Risk by Addition of Patient Reported Outcome Measures (PROM) into Risk Algorithms among Dialysis Patients

Abstract BACKGROUND AND AIMS Health-Related Quality of Life (HRQOL) is a key outcome in dialysis as it stands at the vertex of the outcomes pyramid. The Kidney Disease Quality of Life (KDQOL™-36) questionnaire has been specifically developed for patients affected by kidney disease and it combines both generic and disease-specific scales capturing unique facets of patients’ adaptation to the physical and mental burden of renal disease and dialysis treatment. We sought to evaluate the association between HRQOL scores and the prevalence of adverse outcomes such as mortality and hospitalization events among prevalent dialysis patients. METHOD This is a retrospective, observational analysis of patient-reported outcomes measures (PROMs) collected in NephroCare clinics in Spain in 2019. Clinical and socio-demographic patients’ information were abstracted from EuCliD® (the European Clinical Database) and merged to PROMs HRQOL was assessed by KDQOL™-36 questionnaire and its scores for physical and mental composite (PCS and MCS) as well as for specific-disease dimensions (effects, burden and symptoms) were computed. A renal factor score (RFS) was calculated through principal component analysis to summarize the score of these latter. Mortality and hospitalizations events in the year following the survey administration date were collected and the possible association of these events with HRQOL scores was then explored. Cox and logistic regression models evaluated the relationship between KDQOL™-36 scores and survival and hospitalization events, respectively. A hierarchical model building strategy was adopted to test the incremental discrimination provided by HRQOL scores. First, two outcome risk scores (ORS) were constructed to predict the likelihood of hospitalization and mortality within 12 months given traditional clinical and socio-demographic confounders. Second, KDQOL™-36 scores were added to ORS in the fully adjusted model. We assessed both individual ORS-adjusted coefficient estimates for the KDQOL-36 scales and the KDQOL-36 associated increment in model ROC-AUC. RESULTS We enrolled 1838 prevalent dialysis patients in the present analysis with a response rate of 80.6% (study flowchart is reported in Figure 1). Mean age was 68.8 ± 14.4, 60% were men, 65% presented arteriovenous fistula as vascular access and 66% were on HDF modality. We observed a graded relationship between almost all KDQOL™-36 scores and adverse patient-centred outcomes (average KDQOL-36™ scores are reported in Figure 2). These associations were robust to adjustment for potential confounders. ROC-AUC describe the discrimination accuracy of models predicting hospitalization and mortality events, where both improved after including KDQOL-36™ scores beyond traditional clinical and socio-demographic factors. CONCLUSION We observed a monotonic, clinically important association denoting increased hospitalization and mortality risk among patients with worse KDQOL-36™ scores. The association was robust to adjustment for potential confounders. The KDQOL-36™ score captures unique facets of health, which are not sufficiently accounted for by traditional clinical and socio-demographic correlates of hospitalization and survival. Careful assessment of HRQOL in routine practice can uncover important health trajectories otherwise overlooked by standard clinical care.

Health-related quality of life of children and adolescents living with HIV in Lagos, Nigeria: a cross-sectional study.

Introductionadolescents living with HIV [ALHIV] face the dual challenges of adolescence and coping with HIV infection. This study aims to evaluate health-related quality of life [HRQoL] of children and adolescents aged 8 - 18 years living with HIV in an HIV treatment centre in Lagos, Nigeria.Methodswe conducted a cross-sectional study among children and adolescents living with HIV and receiving antiretroviral therapy. HRQoL was assessed using the Paediatric Quality of Life Inventory [PedQoL™]. Socio-demographic data and HIV related clinical and laboratory characteristics were also obtained and tested based on HRQoL scores in order to determine if there were possible associations.Resultsthe study included 113 participants with a mean age of 14 (± 2.9) years. There was male predominance, with a male: female sex ratio of 1.1: 1. The mean duration of ART was 102.9 (±36.9) months and CD4 lymphocyte count was and 741.2 (±335.7) cell/mm3. The majority of participants (62%) were also virally suppressed. Based on self-reported data, the mean physical, psychosocial and total HRQoL scores were 85.0 [± 22.4], 78.5 [±17.5] and 81.6 [±18.4] respectively. Adolescents aged 13-18 years had significantly higher scores than children aged 8-12 years. Male patients who had been on ART for ≥60 months were also significantly associated with higher HRQoL scores (OR=5.46 [CI= 2.24-13.29], p = 0.0009) and OR= 4.80, [CI= 1.58 - 14.56] p = 0.0032).Conclusionthe majority of participants in the study had good HRQoL scores, attesting to the success of highly active antiretroviral therapy for HIV infection and the ease of access and availability to a comprehensive care.

Assessment of dynamic balance during walking in patients with adult spinal deformity

To assess dynamic postural alignment in ASD during walking using a subject-specific 3D approach. 69 ASD (51 ± 20years, 77%F) and 62 controls (34 ± 13years, 62%F) underwent gait analysis along with full-body biplanar Xrays and filled HRQoL questionnaires. Spinopelvic and postural parameters were computed from 3D skeletal reconstructions, including radiographic odontoid to hip axis angle (ODHA) that evaluates the head's position over the pelvis (rODHA), in addition to rSVA and rPT. The 3D bones were then registered on each gait frame to compute the dynamic ODHA (dODHA), dSVA, and dPT. Patients with high dODHA (> mean + 1SD in controls) were classified as ASD-DU (dynamically unbalanced), otherwise as ASD-DB (dynamically balanced). Between-group comparisons and relationship between parameters were investigated. 26 patients were classified as ASD-DU having an average dODHA of 10.4° (ASD-DB: 1.2°, controls: 1.7°), dSVA of 112mm (ASD-DB: 57mm, controls: 43mm), and dPT of 21° (ASD-DB: 18°, controls: 14°; all p < 0.001). On static radiographs, ASD-DU group showed more severe sagittal malalignment than ASD-DB, with more altered HRQoL outcomes. The ASD-DU group had an overall abnormal walking compared to ASD-DB & controls (gait deviation index: 81 versus 93 & 97 resp., p < 0.001) showing a reduced flexion/extension range of motion at the hips and knees with a slower gait speed and shorter step length. Dynamic ODHA was correlated to HRQoL scores. Dynamically unbalanced ASD had postural malalignment that persist during walking, associated with kinematic alterations in the trunk, pelvis, and lower limbs, making them more prone to falls. Dynamic-ODHA correlates better with HRQoL outcomes than dSVA and dPT.

Predictive Value of Health-Related Quality of Life on Radiotherapy Related Toxicities in Patients with Head and Neck Cancer

<h3>Purpose/Objective(s)</h3> aims to assess the association between baseline HRQOL and occurrence of major toxicities in patients with head and neck cancer (HNC). <h3>Materials/Methods</h3> The present study analyzed data from randomized study investigating the utility of HRQoL assessment. Patients with HNC treated by radiotherapy were included from May 2009 to September 2014 in 4 centers in France. At baseline and during follow-up patients were completed QLQ-C30 questionnaire. According to NCI-CTCAE classification, we defined major toxicities as adverse events of grade ≥3 including skin, digestive, general, hematological head/neck toxicities and death related to an adverse event. Cox proportional-hazards regression analyses were performed in two step to assess association between baseline HRQoL score and major toxicities. Firstly Manual backward selection was performed to determine clinical and sociodemographic factors associated with major toxicities with a p-value <0.05 by multivariable analysis. Secondly each baseline HRQOL dimension selected in univariable have been adjusted on variables included in multivariable model based on clinical and sociodemographic data to determine predictive value of HRQOL on major toxicities and value of p <0.05 was considered as statistically significant. The HRQOL scores were included as continuous variables and hazard ratios were calculated for each increase of 10 points in HRQOL. <h3>Results</h3> Out of 200 patients included, the median age was 59.6 years, 79.5% had comorbidities, 55.6% received adjuvant chemotherapy and 90.4% underwent surgery. At baseline, global health status mean score was 67.03 (SD=19.28), the best functioning score was physical functioning (FP) with means of 87.92 (24.35) and the worst symptom score was insomnia with mean score of 31.67 (32.06). The median follow-up was 24 months (range 1.91 to 28.5 months). During follow up, 41 patients (20.5%) developed at least one major toxicity. In multivariable analyses, for each significant HRQoL scales adjusted on model based on clinical and sociodemographic data (age, Center with at least 30 patients included, cancer site, cancer stage, chemotherapy and surgery), a 10-point increase score in the FP (HR: 0.76, 95% CI [0.62 to 0.94], p=0.009), role functioning (HR: 0.87, 95% CI [0.77 to 0.98], p=0.032) and social functioning (HR: 0.88, 95% CI [0.77 to 0.99], p=0.047) were associated with a lower risk of occurrence of major toxicities, while a 10-point increase score in dyspnea (HR: 1.15, 95% CI [1.03 to 1.30], p=0.014), and loss of appetite (HR: 1.16, 95% CI [1.03 to 1.32], p=0.013) were associated with an increased risk of occurrence of major toxicities <h3>Conclusion</h3> Some baseline HRQoL scores were predictive factors of major toxicities and HRQOL should be assessed before treatment to identify patients at risk to develop radiotherapy related toxicities in patients with HNC.

Psychometric properties of an Arabic translation of the quality of life in childhood epilepsy questionnaire (QOLCE-55)

ObjectiveTo develop an Arabic translation of the Quality of Life in Children with Epilepsy-55 questionnaire (QOLCE-55), and to assess its validity and reliability to be readily used in Arabic and Egyptian cultures. Subjects and methodsThe original English version of the QOLCE-55 was translated into Arabic using a forward–backward translation method, and then a cross-sectional survey was conducted including 100 children with epilepsy aged 4–18 years. Caregivers of children completed the Arabic version of the QOLCE-55. Assessment of psychometric properties of the translated questionnaire was conducted using test–retest reliability, internal consistency, and convergent and divergent validity. ResultsThe translated questionnaire showed excellent test–retest reliability with the intra-class correlation coefficient for all questionnaire domains, as well as the overall questionnaire ranging from 0.91 to 0.98. Cronbach alpha exceeded 0.7 denoting good internal consistency except for the emotional functioning scale. Convergent and divergent validity assessment showed that items of all domains significantly correlated with their scale scores with r > 0.4 and these correlations were much higher than correlations with other scales’ scores, consistent with good convergent and divergent validity. The mean total HRQOL score was 65.63 ± 8.79 with the highest score for social functioning domain and lowest score for physical functioning domain. ConclusionThe Arabic version of the QOLCE-55 can be considered a suitable, reliable, and valid tool to assess the HRQOL of children with epilepsy through their caregivers’ reports.

POS-742 HEALTH RELATED QUALITY OF LIFE (HRQOL) IN PAEDIATRIC CHRONIC KIDNEY DISEASE (CKD) AND CAREGIVER BURDEN (CB) – A PROSPECTIVE MIXED-METHODS STUDY

CKD reduces the HRQoL of affected children and is associated with burden on caregivers. Data on HRQoL and CB in CKD from high income countries may not reflect realities of patients and families in low resource settings. Despite our centre’s expertise in providing paediatric CKD care, families frequently discontinue treatment for their child, resulting in poor patient outcomes and ethical challenges to the healthcare team. There is no data regarding HRQoL and CB for paediatric CKD in India. We aimed to measure HRQoL in children with advanced CKD and assess CB in primary caregivers by quantitative scoring and qualitative analysis of novel factors pertinent to our low resource setting. A prospective study conducted at a stand-alone, low-cost, tertiary paediatric nephrology centre with a large referral base. Patients: All children (1-18 yrs) with CKD (Stage 4,5) on treatment >3 months. Caregivers: The parent/grandparent identified by family as patient’s primary medical caregiver. HRQoL Tool: validated PedsQL™ Version 4.0. Patient scores were compared with published control data mean scores [Indian (87.4 ± 11.1) and international (83.9 ± 12.5)]. PedsQL ESRD Module, Version 3.0 was used and compared with previous reported data (69.2 ± 23.2). HRQoL scores were standardised by minimum-maximum normalization (range 0 – 1). ‘Worse’ HRQoL = standardized score </= 0.5. CB Tool: validated Pediatric Renal Caregiver Burden Scale and compared with previous data (120 ± 16.4). ‘High’ CB = CB scores>our study population mean. Reflexive thematic analysis of qualitative data (in-depth audiotaped interviews) was performed to capture family-prioritized factors affecting HRQoL and CB. Patients: 40 CKD patients (26 male, median age 11 yrs, 30 on dialysis) and caregivers (38 mothers) were included. Families (65% lower middle/upper lower SES) had median income of INR 18000/month. Patient HRQoL mean scores (63.1 ± 16.7) were lower than controls and previous high income country paediatric CKD data (73.72 ± 17.42). The physical domain contributed significantly to worse Qol. ‘Worse’ HRQoL was associated with inability to attend school (65% vs 13%, p = 0.001), anaemia (57% vs 23%, p=0.031), longer duration of illness (55% vs 15%, p=0.008) and dialysis (58% vs 18%, p=0.034) but not with low SES (p>0.5). Mean scores in ESRD module (57.2 ± 13.2) were low and social life (family/peer interaction) was the worst affected domain (39.9 ± 18.2). Low ESRD module scores were associated with school absence but not with modality or duration on dialysis. Primary Caregiver burdenmean (143.9 ± 17.1) was higher than previously reported. ‘High’ CB was associated with CKD Stage 5 vs stage 4 but was similar for HD vs CAPD. Parent CB inversely correlated with child’s HRQoL (r= - 0.58, p=0.001). Qualitative analysis themes generated were “catastrophic healthcare expenditure”, “mental stress and sleep disturbance” and “extreme social isolation” especially in those doing dialysis. Identified themes and illustrative quotes are depicted in figure 1. Fig1: Thematic schema derived from analysis of in-depth caregiver interviews Children with CKD have low HRQoL and their caregivers, high CB. Factors contributing to CB were unique to our low resource settings, and not elucidated by scoring tools alone. We intend to use these findings to improve counseling and provide better social and financial support to families.

Quality metrics in adult spinal deformity surgery over the last decade: a combined analysis of the largest prospective multicenter data sets.

The reported rate of complications and cost of adult spinal deformity (ASD) surgery, associated with an exponential increase in the number of surgeries, cause alarm among healthcare payers and providers worldwide. The authors conjointly analyzed the largest prospective available ASD data sets to define trends in quality-of-care indicators (complications, reinterventions, and health-related quality of life [HRQOL] outcomes) since 2010. This is an observational prospective longitudinal cohort study. Patients underwent surgery between January 2010 and December 2016, with > 2 years of follow-up data. Demographic, surgical, radiological, and HRQOL (i.e., Oswestry Disability Index, SF-36, Scoliosis Research Society-22r) data obtained preoperatively and at 3, 6, 12, and 24 months after surgery were evaluated. Trends and changes in indicators were analyzed using local regression (i.e., locally estimated scatterplot smoothing [LOESS]) and adjusted odds ratio (OR). Of the 2286 patients included in the 2 registries, 1520 underwent surgery between 2010 and 2016. A total of 1151 (75.7%) patients who were treated surgically at 23 centers in 5 countries met inclusion criteria. Patient recruitment increased progressively (2010-2011 vs 2015-2016: OR 1.64, p < 0.01), whereas baseline clinical characteristics (age, American Society of Anesthesiologists class, HRQOL scores, sagittal deformity) did not change. Since 2010 there has been a sustained reduction in major and minor postoperative complications observed at 90 days (major: OR 0.59; minor: OR 0.65; p < 0.01); at 1 year (major: OR 0.52; minor: 0.75; p < 0.01); and at 2 years of follow-up (major: OR 0.4; minor: 0.80; p < 0.01) as well as in the 2-year reintervention rate (OR 0.41, p < 0.01). Simultaneously, there has been a slight improvement in the correction of sagittal deformity (i.e., pelvic incidence-lumbar lordosis mismatch: OR 1.11, p = 0.19) and a greater gain in quality of life (i.e., Oswestry Disability Index 26% vs 40%, p = 0.02; Scoliosis Research Society-22r, self-image domain OR 1.16, p = 0.13), and these are associated with a progressive reduction of surgical aggressiveness (number of fused segments: OR 0.81, p < 0.01; percent pelvic fixation: OR 0.66, p < 0.01; percent 3-column osteotomies: OR 0.63, p < 0.01). The best available data show a robust global improvement in quality metrics in ASD surgery over the last decade. Surgical complications and reoperations have been reduced by half, while improvement in disability increased and correction rates were maintained, in patients with similar baseline characteristics.

Alteration of the Sitting and Standing Movement in Adult Spinal Deformity.

Adults with spinal deformity (ASD) are known to have spinal malalignment affecting their quality of life and daily life activities. While walking kinematics were shown to be altered in ASD, other functional activities are yet to be evaluated such as sitting and standing, which are essential for patients’ autonomy and quality of life perception. In this cross-sectional study, 93 ASD subjects (50 ± 20 years; 71 F) age and sex matched to 31 controls (45 ± 15 years; 18 F) underwent biplanar radiographic imaging with subsequent calculation of standing radiographic spinopelvic parameters. All subjects filled HRQOL questionnaires such as SF36 and ODI. ASD were further divided into 34 ASD-sag (with PT > 25° and/or SVA >5 cm and/or PI-LL >10°), 32 ASD-hyperTK (with only TK >60°), and 27 ASD-front (with only frontal malalignment: Cobb >20°). All subjects underwent 3D motion analysis during the sit-to-stand and stand-to-sit movements. The range of motion (ROM) and mean values of pelvis, lower limbs, thorax, head, and spinal segments were calculated on the kinematic waveforms. Kinematics were compared between groups and correlations to radiographic and HRQOL scores were computed. During sit-to-stand and stand-to-sit movements, ASD-sag had decreased pelvic anteversion (12.2 vs 15.2°), hip flexion (53.0 vs 62.2°), sagittal mobility in knees (87.1 vs 93.9°), and lumbar mobility (L1L3-L3L5: −9.1 vs −6.8°, all p < 0.05) compared with controls. ASD-hyperTK showed increased dynamic lordosis (L1L3–L3L5: −9.1 vs −6.8°), segmental thoracic kyphosis (T2T10–T10L1: 32.0 vs 17.2°, C7T2–T2T10: 30.4 vs 17.7°), and thoracolumbar extension (T10L1–L1L3: −12.4 vs −5.5°, all p < 0.05) compared with controls. They also had increased mobility at the thoracolumbar and upper-thoracic spine. Both ASD-sag and ASD-hyperTK maintained a flexed trunk, an extended head along with an increased trunk and head sagittal ROM. Kinematic alterations were correlated to radiographic parameters and HRQOL scores. Even after controlling for demographic factors, dynamic trunk flexion was determined by TK and PI-LL mismatch (adj. R 2 = 0.44). Lumbar sagittal ROM was determined by PI-LL mismatch (adj. R 2 = 0.13). In conclusion, the type of spinal deformity in ASD seems to determine the strategy used for sitting and standing. Future studies should evaluate whether surgical correction of the deformity could restore sitting and standing kinematics and ultimately improve quality of life.

What Factors are Associated with Health-Related Quality of Life in Mixed Dentition Children?

Objective: To associate the OHRQoL and HRQoL in mixed dentition children with the influence on age range, socioeconomic and clinical variables. Material and Methods: A cross-sectional study was carried out with 1,240 children between 6 and 12 years of age. HRQoL was assessed by the Quality of Life Assessment Scale, considered an outcome variable. OHRQoL was determined using specific questionnaires related to the age group: Oral Health Impact Scale in Early Childhood, Child Perceptions Questionnaire for 8 to 10 years, and 11 to 12 years. Dental caries and malocclusion were diagnosed. The socioeconomic class was evaluated. A multiple negative binomial regression analysis was used to test the relationship between HRQoL, OHRQoL scores and socioeconomic and clinical variables. Correlation analyses were performed between the total HRQoL and OHRQoL, with a significance level of 5%. Results: The HRQoL is inversely related to the impact of OHRQoL (p<0.05), modulated by the age group. There was a significant weak negative correlation between the HRQoL scores and the impact of OHRQoL (p<0.05). Conclusion: The OHRQoL impacts the HRQoL, modulated by the age group and with minor influence from socioeconomic and clinical variables.

Ability of Visual Analogue Scale to predict Oswestry Disability Index improvement and surgical treatment decision in patients with adult spinal deformity

IntroductionThe effect of pain on HRQoL scores in ASD patients is not well studied. Disability is a major factor on decision and outcomes. On the other hand, little is known about the effect of perceived and reported pain on these parameters, especially in the elderly population. We hypothesized that baseline back and leg pain would not affect the treatment decision whereas may have a negative effect on outcomes. Research questionTo determine the correlation between preoperative ODI and VAS scores; and to identify the effect of baseline VAS score on treatment decision and ODI improvement following treatment. Material and methodsIn this retrospective study, patients with a follow-up duration of minimum 2 years were enrolled from a prospective multicentric ASD database. Pearson and Spearman correlation tests were used to evaluate the correlation between ODI and VAS scores; univariate binary logistic regression method was used to analyze the effect of VAS on treatment decision as well as the outcomes. Results1050 patients (mean age 48.2) were analyzed. Baseline ODI and back, leg pain VAS scores were significantly correlated (P ​< ​0.001). One unit increase in baseline back and leg pain VAS scores, increased the probability of improvement in ODI by 1.219 (P ​= ​0.016) and 1.182 times (P ​= ​0.029), respectively in surgically treated patients; and reduced it by 0.894 times (P ​= ​0.012) for conservatively treated patients. For patients >70 years old, one-unit increase in baseline leg pain VAS score increased the probability of deciding on surgical treatment by 1.121 times (p ​= ​0.016). Discussion and conclusionsPreoperative back and leg pain VAS scores were found to be significantly correlated with the preoperative ODI scores. Additionally, preoperative baseline back and leg pain VAS scores were useful in predicting the improvement in disability as assessed by ODI. Another important finding was that, higher baseline leg pain (but not back pain) VAS scores increased the rate of elderly patients preferring surgical treatment.

ASSESSMENT OF HEALTH RELATED QUALITY OF LIFE (HRQOL) AND PROBLEM FACED BY KIDNEY TRANSPLANT PATIENT ATTENDING IN SELECTED NEPHROLOGY OPD, WEST BENGAL

Renal transplantation is generally believed to provide a considerable improvement in health related quality of life when compared with dialysis. As the number of kidney transplant patient increases, quality of life (QOL) after transplantation is an important area of concern for the health care professionals. Adescriptive survey was undertaken with the objectives to assess the HRQOLof 60 patients underwent kidney transplantation, to identify their health related problems and to nd out association between HRQOL and selected socio demographic variables among patient underwent kidney transplantation. The study setting was Nephrology OPD of IPGME&amp;R, SSKM Hospital, Kolkata. The revised Wilson and Cleary model of HRQOL was adopted for this study. Avalid and reliable structured tool KDQOL-SF and semi-structured interview schedule was used to collect the data from respondents who were selected through non-probability purposive sampling. The domain of role limitation and vitality were at signicantly lower level. Majority of respondents (68.33%) showed moderate QOL after transplantation. There were signicant association between gender, education, period of transplantation, monthly family income and level of QOL(p&lt;0.05). The study result has several implications in nursing practice, education, administration and research. So the recommendations were made for further research. The study concluded that most of the respondent’s HRQOL scores showed clinically signicant improvement after transplantation

QOLP-19. FINANCIAL TOXICITY AND DISTRESS DURING THE COVID-19 PANDEMIC IN PEOPLE LIVING WITH PRIMARY BRAIN TUMORS

Primary brain tumor (PBT) patients experience high symptom burden and functional limitations, which may be impacted by the economic strain and mood disturbance during the COVID-19 pandemic. We assessed financial toxicity and associated patient reported outcomes (PROs) after one year of lockdown in a cohort of PBT patients. Patient and disease characteristics and PROs including FACIT-COST, MDASI-Brain Tumor, PROMIS-Anxiety/Depression short forms, and EQ-5D-3L were collected from 7/2020 to 5/2021 from participants in our Natural History Study. Descriptive statistics, Pearson correlations, and independent samples t-tests evaluated PRO relationships. The cohort included 112 PBT patients: 57% male, 87% white, mean age = 47 (range 25 – 80). Majority were married (65%), completed ≥ 4-year college degree (73%), earned annual family income ≥ $50,000 (68%) and living with a high-grade glioma (72%) complicated by recurrence (51%). Using FACIT-COST, 56% reported some financial hardship due to illness with a mean FACIT-COST of 28.3 (SD = 11.3, range: 0 - 44). Half of patients reported feeling moderately to extremely anxious or depressed. Non-Whites and Hispanics as well as those not currently working reported worse financial toxicity compared to White non-Hispanics and individuals currently working (21.4 vs 29.8 and 25.7 vs 30.4, respectively). Worse financial toxicity scores strongly correlated with worse overall symptom burden (r = -0.55) and interference (r = -0.42), worse anxiety (r = -0.39) and depression scores (r = -0.44), and worse overall HRQOL scores (r = –0.33)[all p< .01]. This is the first report of FACIT-COST in PBT patients to our knowledge and demonstrates that non-White individuals living with high grade glioma who are not currently working due to their tumor reported worse financial toxicity which was strongly correlated with higher symptom burden and interference with lower HRQOL. Future studies to assess financial toxicity longitudinally and post-pandemic using the FACIT-COST are needed.

Quality of life in young adults with acne: Results of a cross-sectional study.

The impact of acne on quality of life (QoL) may vary between patients from different age groups. There are limited data in the literature on QoL of young adults with acne and acne scars. To assess the QoL of young adults (age 18 to 25) with acne by using dermatology life quality index (DLQI) and Cardiff acne disability index (CADI), to assess the scores of individual items on DLQI and CADI, and to compare the two scales. In this cross-sectional questionnaire study of 1392 subjects with acne, each subject completed two questionnaires: DLQI and CADI. Mean values of DLQI and CADI, and those of individual items on DLQI and CADI were calculated; t-test was used for testing mean values and Spearman's rho coefficient for correlation between two questionnaires. Mean DLQI (4.50) and CADI (3.60) scores were low. However, scores were significantly higher in females and in those with acne scars. "Feelings of embarrassment" and "interference with social activities" scored significantly higher for females across both questionnaires. There was no correlation between severity (as well as duration) of acne and HRQoL scores. Spearman's rho coefficient of correlation between DLQI and CADI was 0.71. Acne impaired the QoL of young adults, acne scars more so. Females felt worse about their appearance with greater embarrassment and impaired social activities. QoL scores seem to depend on patients' perceptions, which may depend on factors other than objective severity of acne. We found good correlation between the two scales.