Generic Health-related Quality Of Life Outcome Research Articles

QOL-14. HEALTH-RELATED QUALITY OF LIFE AND COGNITIVE FUNCTIONING IN SURVIVORS OF OLIGODENDROGLIOMA: AN INTERNATIONAL CROSS-SECTIONAL INVESTIGATION

Abstract BACKGROUND Patients with oligodendroglioma have a relatively favourable prognosis. Treatment modalities used vary, and the long-term impacts of the tumour itself and its treatment on health-related quality of life (HRQOL) and cognition remain largely unclear. We investigated associations between treatment and functioning of oligodendroglioma patients. METHODS In this international cross-sectional observational study, patients with oligodendroglioma (IDH-mutant and 1p/19q-codeleted) diagnosed ≥5 years ago, were recruited through the European Organisation for Research and Treatment of Cancer (EORTC) networks. Diagnosis and treatment data were collected from medical records; patients completed outcomes for HRQOL (EORTC QLQ-C30; BN20), self-reported cognitive functioning (MOS Cognitive Complaints Scale) and cognitive tests (HVLT-R, TMT, COWAT). Associations between HRQOL and cognition outcomes, and clinical variables (time since diagnosis; progression; tumour location; treatments delivered; current medication; Karnofsky Performance Status (KPS)) were explored with regression analyses. RESULTS 242 oligodendroglioma patients on average 9.9 years post-diagnosis (sd=4.3, range=5.0-26.3) took part from 33 sites across 9 countries. Patients were M=52 years old (sd=12, range=23-78), the majority were men (N=145; 60%). Higher KPS, no radiotherapy (ever), no current medication (anxiolytics/sedatives; antidepressants; dexamethasone) were associated with better generic HRQOL outcomes (QLQ-C30 functioning scale models; R2 range 0.068-0.371, all p<.001). Higher KPS, fewer recurrences, no radiotherapy treatment (ever), and no current antidepressant use were linked to better disease-specific HRQOL (BN20 multi-item scale models; R2 range 0.067-0.246, p<0.001). Fewer subjective cognitive complaints were associated with higher KPS and no current antipsychotic medication (R2=0.153, p<0.001). Better KPS, right hemispheric tumours, longer time since diagnosis, no chemotherapy (ever), no radiotherapy (ever), and no current medications (dexamethasone; antipsychotics) were predictive of better cognitive functioning (R2 range 0.056-0.248, p<0.001). CONCLUSION In oligodendroglioma survivors, better HRQOL and cognitive outcomes appeared consistently linked with higher KPS, no current medication use, and never having received radiotherapy. Additionally, better cognitive outcomes were associated with no chemotherapy treatment.

Quality of Life After Bladder Cancer: A Cross-sectional Survey of Patient-reported Outcomes

BackgroundLittle is known about health-related quality of life (HRQOL) following treatment for bladder cancer (BC). ObjectiveTo determine this, we undertook a cross-sectional survey covering 10% of the English population. Design, setting, and participantsParticipants 1–10 yr from diagnosis were identified through national cancer registration data. InterventionA postal survey was administered containing generic HRQOL and BC-specific outcome measures. Findings were compared with those of the general population and other pelvic cancer patients. Outcome measurements and statistical analysisGeneric HRQOL was measured using five-level EQ-5D (EQ-5D-5L) and European Organization for Research and Treatment of Cancer quality of life questionnaire (EORTC QLQ)-C30. BC-specific outcomes were derived from EORTC QLQ-BLM30 and EORTC QLQ-NMIBC24. Results and limitationsA total of 1796 surveys were completed (response rate 55%), including 868 (48%) patients with non–muscle-invasive BC, 893 (50%) patients who received radiotherapy or radical cystectomy, and 35 (1.9%) patients for whom treatment was unknown. Most (69%) of the participants reported at least one problem in any EQ-5D dimension. Age/sex-adjusted generic HRQOL outcomes were similar across all stages and treatment groups, whilst problems increased with age (problems in one or more EQ-5D dimensions: <65 yr [67% {95% confidence interval or CI: 61–74}] vs 85+ yr [84% {95% CI: 81–89}], p = 0.016) and long-term conditions (no conditions [53% {95% CI: 48–58}] vs more than four conditions [94% {95% CI: 90–97}], p < 0.001). Sexual problems were reported commonly in men, increasing with younger age and radical treatment. Younger participants (under 65 yr) reported more financial difficulties (mean score 20 [95% CI: 16–25]) than those aged 85+ yr (6.8 [4.5–9.2], p < 0.001). HRQOL for BC patients (for comparison, males with problems in one or more EQ-5D dimensions 69% [95% CI: 66–72]) was significantly worse than what has been found after colorectal and prostate cancers and in the general population (51% [95% CI: 48–53], all p < 0.05). ConclusionsHRQOL following BC appears to be relatively independent of disease stage, treatment, and multimodal care. Issues are reported with sexual function and financial toxicity. HRQOL after BC is worse than that after other pelvic cancers. Patient summaryPatients living with bladder cancer often have reduced quality of life, which may be worse than that for other common pelvic cancer patients. Age and other illnesses appear to be more important in determining this quality of life than the treatments received. Many men complain of sexual problems. Younger patients have financial worries.

Quality of Life and Health Utility Scores Among Canadians Living With Traumatic Spinal Cord Injury - A National Cross-Sectional Study.

National, multicenter, cross-sectional study. The goal of this study was to provide overall quality of life (QOL) and health utility (HU) values for patients with traumatic spinal cord injury (SCI) stratified by injury level and neurological status. Traumatic SCI is a leading cause of disability. Varying injury level and severity generate a spectrum of neurological dysfunction and reduction in long-term QOL. The Canadian SCI Community Survey was sent to Canadians living in the community after SCI. The impact of demographics, complications, and SCI classification on QOL was assessed using Analysis of variance, multiple linear regressions and ordinal logistic regression analyses. There were 1109 respondents with traumatic SCI. american spinal injury association impairment scale (AIS) grade was reported to be cervical motor complete in 20%, cervical motor incomplete in 28%, thoracolumbar motor complete in 32%, thoracolumbar motor incomplete in 16%, and normal (any level) in 1%. Injury level or AIS grade had no impact on either HU or QOL. The physical component of health-related quality of life (HRQOL) was significantly affected by the neurological level, but not the social or mental components. With a mean health utility score of 0.64 ± 0.12, SCI patients living in the community reported having HRQOL similar to patients after total knee arthroplasty or lumbar spinal stenosis decompression. QOL or HU measured by generic HRQOL outcome tools should not be used as outcomes to assess the effectiveness of interventions targeting neurological function in traumatic SCI. A disease-specific instrument that captures the nuances specific to spinal cord injury patients is required. 1.

Psychometric evaluation and adaptation of the Spine Oncology Study Group Outcomes Questionnaire to evaluate health-related quality of life in patients with spinal metastases.

BACKGROUNDThe Spine Oncology Study Group Outcomes Questionnaire (SOSGOQ) was developed as the first spine oncology‐specific health‐related quality of life (HRQOL) measure. This study evaluated the psychometric properties and clinical validity of the SOSGOQ in a diverse cohort of patients with spinal metastases.METHODSAn international, multicenter, prospective observational cohort study including patients with spinal metastases who underwent surgery and/or radiotherapy was conducted by the AOSpine Knowledge Forum Tumor. Demographic, tumor, and treatment data were collected. HRQOL was evaluated using the SOSGOQ and Medical Outcomes Study Questionnaire Short Form 36 Health Survey (SF‐36) at baseline and fixed follow‐up times. Construct validity was assessed using multitrait scaling analyses, confirmatory factor analyses, and correlation with the SF‐36 and NRS pain score. Test‐retest reliability was assessed in a subgroup of patients between 12 weeks after treatment and the retest 4 to 9 days later.RESULTSA total of 238 patients were enrolled at 9 centers across North America; 153 of these patients had HRQOL data available at 12 weeks after treatment. Multitrait scaling analyses and confirmatory factor analyses resulted in a refined version of the SOSGOQ with 4 domains and 4 single items. The revised SOSGOQ (SOSGOQ2.0) demonstrated strong correlations with SF‐36 and the ability to discriminate between clinically distinct patient groups. Reliability of the SOSGOQ2.0 was demonstrated to be good, with an intraclass correlation coefficient ranging from 0.58 to 0.92 for the different domains.CONCLUSIONSThe SOSGOQ2.0 is a reliable and valid measure with which to evaluate HRQOL in patients with spinal metastases. It is recommended to use the SOSGOQ2.0 together with a generic HRQOL outcome measure to comprehensively assess HRQOL and increase sensitivity and specificity. Cancer 2018;124:1828‐38. © 2018 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.

Botulinumtoxin Improves both Generic and Disease-Specific Quality of Life in Cervical Dystonia.

Botulinumtoxin injection (BoNT) into affected muscles is effective to improve motor symptoms of cervical dystonia (CD) by reducing muscle contraction and involuntary dystonic movement and posturing. However, the understanding of the effect on health-related quality of life (HR-QoL) and patient referral under HR-QoL aspects is incomplete. In this open-label clinical prospective observational study, we characterized the outcomes in CD (n = 159) from botulinumtoxin on both generic HR-QoL (EuroQol; EQ-5D-5L) and disease-specific HR-QoL [craniocervical dystonia questionnaire (CDQ-24)]. Additionally, we characterized motor and non-motor signs of dystonia including motor symptom improvement, depressive symptoms, pain, and sleep quality. We assessed patients at the end of a regular 3-month period from last injection (Timepoint1) and 4 weeks after the re-injection of BoNT (Timepoint2). We aimed to define outcomes on both generic and disease-specific HR-QoL and to evaluate predictors of therapeutic outcome in terms of stepwise multiple regression models. Patients with CD showed a robust improvement of both generic and disease-specific HR-QoL. Furthermore, motor and non-motor signs improved. Multiple regression analyses revealed that EQ-5D-5L and “satisfaction with health” (Fragen zur Lebenszufriedenheit-G) at Timepoint1 predicted treatment response on generic HR-QoL outcome (R2 = 0.284; P = 0.019). Similarly, CDQ-24 and Beck’s Depression inventory at Timepoint1 predicted the treatment response on disease-specific HR-QoL (R2 = 0.253; P = 0.026). Our study underscores both generic and disease-specific HR-QoL improvements in CD, and provides useful predictors on HR-QoL outcomes.

POG06 Development and validation of a quality of life scale for mitochondrial disease (Mito-QoL)

IntroductionMitochondrial diseases are a clinically multifarous group of genetic disorders with extensive phenotypic and disease burden variability. Health related quality of life (HRQoL) is increasingly recognised as a fundamental patient-based...

Major improvements in health-related quality of life during the use of etanercept in patients with previously refractory juvenile idiopathic arthritis

Objective:To evaluate changes in health-related quality of life (HRQoL) in patients with refractory juvenile idiopathic arthritis (JIA) who are being treated with etanercept.Methods:53 patients with JIA from seven Dutch centres...

Factors Predicting Motor Recovery and Functional Outcome After Traumatic Central Cord Syndrome

A prospectively maintained database-generated retrospective review and cross-sectional outcome analysis was performed at a single academic center. To assess the improvement in ASIA motor score (AMS) and secondarily to assess generic health related quality of life (HRQoL) and functional status; correlating these with variables that may predict outcome. Many variables are potential contributors to motor recovery, patient function, and outcome following cervical trauma. Studies often suffer from low power, short follow-up, heterogeneous cohorts, and use of outcome instruments that are neither valid nor psychometrically sound. AMS were collected within 72 hours of the time of injury and again at follow-up by trained examiners. The SF-36 and FIM were administered to all patients at follow-up. AMS improved from a mean of 58.7 at injury to a mean of 92.3 at follow-up. Bowel and bladder continence was reported by 81% while independent ambulation was reported by 86%. Final AMS was positively correlated with the AMS at injury, formal education, and presence of spasticity at follow-up. Functional status (FIM) was positively correlated with higher AMS at injury, formal education, absence of comorbidities, absence of spasticity, and younger age. Generic HRQoL outcomes (SF-36) were improved in individuals with more formal education, fewer comorbidities, absence of spasticity, and anterior column fractures. Although the majority of patients improve to an AMS between 90 and 100, many have significant disability and are less functional than the general population. Significant predictive variables include the initial motor score, formal education, comorbidities, age at injury, and development of spasticity. An assessment of more than just the motor score is required to obtain an appreciation of the function and outcomes in this population.