Determinants of quality of life in patients with skull base chordoma

2014 ◽  
Vol 120 (2) ◽  
pp. 528-537 ◽  
Author(s):  
Roberto Jose Diaz ◽  
Nicole Maggacis ◽  
Shudong Zhang ◽  
Michael D. Cusimano

Object Skull base chordomas can be managed by surgical intervention and adjuvant radiotherapy. As survival for this disease increases, identification of determinants of quality of life becomes an important focus for guiding comprehensive patient care. In this study the authors sought to measure functional outcome and quality of life in patients with skull base chordomas and to identify determinants of quality of life in these patients. Methods The authors carried out an internet-based cross-sectional survey, collecting detailed data for 83 individual patients. Demographic and clinical variables were evaluated. Functional outcomes were determined by Karnofsky Performance Scale (KPS) and Glasgow Outcome Scale Extended (GOSE), quality of life was measured using the 36-Item Short Form Health Survey (SF-36), and depression was assessed using Patient Health Questions–9 (PHQ-9) instrument. Caregiver burden was assessed using the Zarit Burden Interview (ZBI). Univariate and multivariate analysis was performed to identify determinants of the physical and mental components of the SF-36. Results Patients with skull base chordomas who have undergone surgery and/or radiation treatment had a median KPS score of 90 (range 10–100, IQR 10) and a median GOSE score of 8 (range 2–8, IQR 3). The mean SF-36 Physical Component Summary score (± SD) was 43.6 ± 11.8, the mean Mental Component Summary score was 44.2 ±12.6, and both were significantly lower than norms for the general US population (p < 0.001). The median PHQ-9 score was 5 (range 0–27, IQR 8). A PHQ-9 score of 10 or greater, indicating moderate to severe depression, was observed in 29% of patients. The median ZBI score was 12 (range 0–27, IQR 11), indicating a low burden. Neurological deficit, use of pain medication, and requirement for corticosteroids were found to be associated with worse SF-36 Physical Component Summary score, while higher levels of depression (higher PHQ-9 score) correlated with worse SF-36 Mental Component Summary score. Conclusions Patients with skull base chordomas have a lower quality of life than the general US population. The most significant determinants of quality of life in the posttreatment phase in this patient population were neurological deficits (sensory deficit and bowel/bladder dysfunction), pain medication use, corticosteroid use, and levels of depression as scored by PHQ-9.

2013 ◽  
Vol 2013 ◽  
pp. 1-7 ◽  
Author(s):  
Rainer Lüdtke ◽  
Stefan N. Willich ◽  
Thomas Ostermann

Background. Cohort studies have reported that patients improve considerably after individualised homeopathic treatment. However, these results may be biased by regression to the mean (RTM).Objective. To evaluate whether the observed changes in previous cohort studies are due to RTM and to estimate RTM adjusted effects.Methods. SF-36 quality-of-life (QoL) data from a German cohort of 2827 chronically diseased adults treated by a homeopath were reanalysed by Mee and Chua’s modifiedt-test.Results. RTM adjusted effects, standardized by the respective standard deviation at baseline, were 0.12 (95% CI: 0.06–0.19,P<0.001) in the mental and 0.25 (0.22–0.28,P<0.001) in the physical summary score. Small-to-moderate effects were confirmed for the most individual diagnoses in physical, but not in mental component scores. Under the assumption that the true population mean equals the mean of all actually diseased patients, RTM adjusted effects were confirmed for both scores in most diagnoses.Conclusions. Changes in QoL after treatment by a homeopath are small but cannot be explained by RTM alone. As all analyses made conservative assumptions, true RTM adjusted effects are probably larger than presented.


2011 ◽  
Vol 17 (10) ◽  
pp. 1238-1249 ◽  
Author(s):  
Oscar Fernández ◽  
Karine Baumstarck-Barrau ◽  
Marie-Claude Simeoni ◽  
Pascal Auquier ◽  

Background: Multiple sclerosis (MS) can have psychological and socioeconomic consequences that affect patients’ health-related quality of life (HRQoL) as much as physical disability. Objective: To determine the clinical and sociodemographic factors affecting HRQoL in a large international study using the MS International QoL (MusiQoL) questionnaire. Methods: Patients aged >18 years with a diagnosis of MS for >6 months or clinically isolated syndrome (CIS) were enrolled. Sociodemographic and clinical data were recorded, and patients completed the MusiQoL and 36-item short form (SF-36) health survey questionnaires. Results: In total, 1992 patients from 15 countries were enrolled (mean [standard deviation] age: 42.3 [12.5] years; 70.5% women; 70.4% with relapsing–remitting MS). Multivariate multiple regression analyses identified lower educational level, higher Expanded Disability Status Scale (EDSS) score, cognitive impairment, being single and shorter time since last relapse as significant predictors of lower MusiQoL global index scores ( p < 0.05). Older age, female sex, higher EDSS score, shorter time since last relapse and receiving current MS treatment were significant predictors of lower SF-36 physical component summary scores ( p < 0.05). The SF-36 mental component summary score was linked to occupational status, inpatient/outpatient status, time since last relapse, and whether the patient was receiving MS treatment ( p < 0.05). Conclusion: Sociodemographic and clinical factors are linked to HRQoL in patients with MS. Interventions that affect these factors might be expected to influence HRQoL.


2015 ◽  
Vol 16 (6) ◽  
pp. 621-625 ◽  
Author(s):  
Anja Kutscher ◽  
Ulf Nestler ◽  
Matthias K. Bernhard ◽  
Andreas Merkenschlager ◽  
Ulrich Thome ◽  
...  

OBJECT Congenital hydrocephalus has a major impact on the lives of patients and their relatives, as well as their long-term neurological development and social integration. The aim of this study was to assess the self-reported health-related quality of life (HRQOL) of patients after reaching adulthood. METHODS A total of 31 patients who required CSF shunt treatment for congenital hydrocephalus within the 1st year of life (between 1963 and 1987) agreed to undergo a structured SF-36 self-assessment. An age-matched German standard cohort was used as control. Additional parameters of surgical, social, and global neurological outcome were analyzed. The mean patient age was 35 years (range 26–51 years, 13 females and 18 males). Hydrocephalus etiologies were posthemorrhagic hydrocephalus (n = 9), postinfectious hydrocephalus (n = 5), aqueductal stenosis (n = 10), myelomeningocele (n = 2), and unknown cause (n = 5). RESULTS The mean modified Rankin Scale score was 1.6 (range 0–4). Hydrocephalic patients achieved lower scores for the SF-36 items physical functioning (70.5 vs 93.5, p < 0.05), physical role functioning (74.2 vs 88.3, p < 0.05), and general health perceptions (64.5 vs 72.3, p < 0.05). Emotional, social role functioning, and mental health items did not differ between the groups. Assessment of vitality and pain resulted in a trend to worse values. Whereas the Physical Component Summary score was lower (46.1 vs 54.3, p < 0.05), the Mental Component Summary score was not significantly different (50.2 vs 48.7, p = 0.3). There was neither a statistically significant difference between subgroups of different etiologies nor an association with the number of subsequent hydrocephalus-related surgeries. CONCLUSIONS Adult HRQOL for patients with congenital hydrocephalus appears to be similar to that for healthy con with regard to mental health and social functioning aspects. Physical impairment is a predominant factor of compro quality of life.


2009 ◽  
Vol 37 (2) ◽  
pp. 385-392 ◽  
Author(s):  
WALTER P. MAKSYMOWYCH ◽  
KATHERINE L. GOOCH ◽  
ROBERT L. WONG ◽  
HARTMUT KUPPER ◽  
DÉSIRÉE VAN DER HEIJDE

Objective. To determine factors associated with work in patients with ankylosing spondylitis (AS).Methods. Three hundred fifteen patients with AS were enrolled in a 24-week, randomized controlled study of adalimumab with a longterm, open-label, adalimumab extension phase. Patient-reported outcome (PRO) measures included the Medical Outcome Study Short Form 36 Health Survey (SF-36), AS Quality of Life Questionnaire (ASQOL), Health Utilities Index Mark 3 (HUI-3), and Work Productivity and Activity Impairment-Specific Health Problem Questionnaire (WPAI-SHP). Multivariate logistic regression was used to analyze differences between working and nonworking patients. The relationships between PRO and WPAI-SHP scores were assessed using Pearson correlation coefficients. Multivariate modeling was applied to determine factors associated with productivity while at work. WPAI-SHP was assessed through 3 years of adalimumab exposure.Results. Younger age (p = 0.002) and male sex (p < 0.001) were significantly and independently associated with working patients with AS. The SF-36 Physical Component Summary score (p < 0.001), ASQOL score (p < 0.001), HUI-3 scores (p < 0.001), and both patient’s global assessment of disease activity (p < 0.001) and nocturnal pain (p < 0.001) scores were independently associated with working status. Work absenteeism due to AS was weakly correlated with all PRO scores. WPAI-SHP components of work presenteeism (lack of productivity at work), activity impairment, and overall work productivity loss due to AS were moderately correlated with quality of life as measured by the ASQOL, the SF-36 Physical Component Summary score, and the SF-36 Bodily Pain domain. Linear multivariate analyses indicated that work presenteeism was significantly associated with pain, functioning, and disease activity. Longterm adalimumab treatment was associated with sustained improvements in WPAI-SHP scores.Conclusions. Quality of life and the physical consequences associated with AS have a direct relationship with a patient’s ability to work. Adalimumab sustains improvements in work outcomes in patients with AS.


2019 ◽  
pp. 63-67
Author(s):  
Hoang Thanh Van Nguyen ◽  
Thi Thuy Lien Vo

Background: Ankylosing spondylitis is a chronic arthritis primarily affecting the sacroiliac joints and spine, progressively progressing decrease or loss of spine mobility, severely influences the quality of life. The SF-36 questionnaire is useful in assessing quality of life, monitoring clinical outcomes and effectiveness of treament of ankylosing spondylitis. This study aims to assess the quality of life in patients with ankylosing spondylitis and investigate its correlation with clinical factors. Method: In this cross-sectional study, included 34 ankylosing spondylitis patients who were diagnosed according to the modified New York 1984 criteria. The health status was assessed by using the SF-36 questionnaire. Results: The patients with ankylosing spondylitis had average quality of life (82.4%) and low (17.6%). The mean physical component summary score, mental component summary and SF-36 score was: 36.48 ± 17.89, 48.79 ± 18.49 and 42.66 ± 17.52. There was significant correlation with disease activity, the body mass index and no correlation with age at diagnosis, duration of disease. Conclusions: The patients with ankylosing spondylitis is had significantly low SF-36 scores in all domains. The physical component summary score was more affected than the mental component summary score. Key words: Ankylosing spondylitis, the health-related quality of life, the SF-36 questionnaire


2013 ◽  
Vol 2013 ◽  
pp. 1-7 ◽  
Author(s):  
Joanna Raszeja-Wyszomirska ◽  
Ewa Wunsch ◽  
Agnieszka Kempinska-Podhorodecka ◽  
Daniel S. Smyk ◽  
Dimitrios P. Bogdanos ◽  
...  

Background. Previous studies reported associations between specific alleles of non-HLA immunoregulatory genes and higher fatigue scores in patients with primary biliary cirrhosis (PBC).Aim. To study the relationship between variables of health-related quality of life (HRQoL) and single nucleotide polymorphisms ofTRAF1-C5, a member of the tumor necrosis factor receptor family.Patients and Methods.TRAF1-C5gene polymorphisms, rs2900180 and rs3761847, were analysed in 120 Caucasian PBCs. The HRQoL was assessed with SF-36, PBC-40, and PBC-27 questionnaires.Results. We found a negative association between TT genotype of rs2900180 and SF-36’s domains vitality (P<0.05), mental health (P<0.05), and mental component summary score (P<0.05). GG homozygotes of rs3761847 had lower vitality (P<0.05), mental health (P<0.05), mental component summary score (P<0.05) and impairment of social functioning (P<0.01). Allelic analysis has shown that T allele of rs2900180 and G allele of rs3761847 related to SF-36’s vitality (P<0.05andP<0.01), social functioning (P<0.05andP<0.05), mental health (P<0.01andP<0.05), and mental component summary score (P<0.01andP<0.05), respectively. Genotyping and allelic analysis did not reveal correlation with PBC-40 and PBC-27 domains.Conclusion. The association between rs2900180 and rs3761847 polymorphisms and HRQoL variables indicates that TRAF1 is involved in the induction of impaired QoL in PBC.


BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e047812
Author(s):  
Takuya Aoki ◽  
Shunichi Fukuhara ◽  
Yasuki Fujinuma ◽  
Yosuke Yamamoto

ObjectivesLongitudinal studies, which consider multimorbidity patterns, are useful for better clarifying the effect of multimorbidity on health-related quality of life (HRQoL) and for identifying the target population with poorer clinical outcomes among patients with multimorbidity. This study aimed to examine the effects of different multimorbidity patterns on the decline in HRQoL.DesignNationwide prospective cohort study.SettingJapanese adult residents.ParticipantsResidents aged ≥50 years selected by the quota sampling method.Primary outcome measureClinically relevant decline in HRQoL was defined as a 0.50 SD (5-point) decrease in the 36-Item Short Form Health Survey (SF-36) component summary scores for 1 year.ResultsIn total, 1211 participants completed the follow-up survey. Among the multimorbidity patterns identified using confirmatory factor analysis, multivariable logistic regression analyses revealed that high cardiovascular/renal/metabolic and malignant/digestive/urologic pattern scores were significantly associated with the clinically relevant decline in SF-36 physical component summary score (adjusted OR (aOR)=1.25, 95% CI: 1.08 to 1.44 and aOR=1.28, 95% CI: 1.04 to 1.58, respectively). High cardiovascular/renal/metabolic pattern score was also significantly associated with the clinically relevant decline in SF-36 role/social component summary score (aOR=1.23, 95% CI: 1.06 to 1.42).ConclusionsOur study revealed that multimorbidity patterns have different effects on the clinically relevant decline in HRQoL for 1 year. These findings can be useful in identifying populations at high risk and with poor clinical outcomes among patients with chronic diseases and multimorbidity for efficient resource allocation.


Hand Surgery ◽  
2006 ◽  
Vol 11 (03) ◽  
pp. 103-107 ◽  
Author(s):  
Izuru Kitajima ◽  
Kazureru Doi ◽  
Yasunori Hattori ◽  
Semih Takka ◽  
Emmanuel Estrella

To evaluate the subjective satisfaction of brachial plexus injury (BPI) patients after surgery based on the medical outcomes study 36-item short form health survey (SF-36) and to correlate their SF-36 scores with upper extremity functions. Four items were assessed statistically for 30 patients: SF-36 scores after BPI surgery were compared with Japanese standard scores; the correlation between SF-36 scores and objective joint functions; difference in SF-36 scores between each type of BPI; and influence of each joint function on the SF-36 scores. The SF-36 subscale: PF — physical functioning, RP — role-physical, BP — bodily pain, and the summary score PCS — physical component summary, were significantly inferior to the Japanese standard scores. SF-36 is more sensitive to shoulder joint function than to elbow and finger joint functions. Little correlation was found between SF-36 scores and objective evaluations of joint functions. Greater effort is needed to improve the quality of life (QOL) of BPI patients. This study showed that SF-36 is not sensitive enough to evaluate regional conditions. A region- or site-specific questionnaire is required to evaluate upper extremity surgery.


Author(s):  
Rosanna Tavella ◽  
Natalie Cutri ◽  
John F Beltrame

BACKGROUND. Patients with chest pain and no evidence of obstructive coronary artery disease on angiography (NoCAD) are frequently considered not to have significant pathology and their symptoms trivialized. This study compared the health status of patients with NoCAD, obstructive coronary artery disease (CAD) and healthy subjects. METHOD. Patients undergoing angiography within the preceding 12 months for the investigation of chest pain were categorized as NoCAD or CAD on the basis of the angiographic findings and completed a health-related quality of life instrument, the Short Form-36 (SF-36). These were compared with a ‘healthy control’ group that were randomly selected from the electronic white pages and recruited if they had no self-reported history of cardiovascular disease. Cross sectional comparisons between the three groups were age adjusted and performed using liner regression. RESULTS. As shown in the table below, the healthy controls were significantly younger and therefore comparison of SF36 scores were age adjusted. All SF-36 sub-scales (except for bodily pain) and summary scores (see table ), were significantly lower in the CAD and NoCAD groups compared to the healthy controls. There were no differences in SF-36 scores between NoCAD and CAD. CONCLUSION. Compared with a healthy population, patients with stable CAD and NoCAD have significantly poorer quality of life asF-36. Future management strategies need to address the health outcomes in these patients. Healthy Controls (n = 3168) NoCAD (n = 320) CAD (n = 828) Age 52 ± 15 57 ± 12 * 62 ± 11 # SF-36: Physical Summary Score 49 ± 10 41 ± 11 * 41 ± 11 # SF-36: Mental Summary Score 51 ± 10 46 ± 11 * 46 ± 11 # * p <0.01 for healthy controls vs NoCAD, # p <0.01 for healthy controls vs CAD


2013 ◽  
Vol 69 (1) ◽  
Author(s):  
J. Schneiderman ◽  
H. Van Aswegen ◽  
P. Becker

To investigate the health-related quality of life (HRQOL) of survivors of major trauma at six months following discharge, using two popular HRQOL tools. A cross-sectional study was done on adult trauma survivors in Johannesburg. Subjects completed the EQ-5D and SF-36 HRQOL questionnaires. Additional demographic and clinical data were collected. The majority of subjects reported some problems in usual activities and pain/discomfort as measured with the EQ-5D at six months. The mean EQ-5D VAS was 68 (±26.1). lowest scores were reported in the role physical (44.6 ± 41.6) and role emotional (44.1 ± 45.4) domains of the SF-36. mean SF-36 physical component summary (PCS) score (62.1 ± 27.8) was higher than mental component summary score (58.7 ±20.1). EQ-5D VAS was found to be moderately correlated with age (r=-0.4; p=0.05). A negative correlation was found between SF-36 physical function score and ICU length of stay (LOS), hospital LOS and age (r=-0.4 (p=0.03), -0.4 (p=0.03) and -0.6 (p=0.00) respectively). Statistical significance was observed in the correlation between age and SF-36 general health domain (r=-0.4; p=0.02) as well as age and PCS score (r=-0.5; p=0.01). Trauma survivors in Johannesburg experience limitations in specific emotional and physical domains of HRQOL at six months after discharge. Age was associated with the level of self-rated health as well as limitations in general health and physical function. ICU and hospital LOS were associated with limitations in physical function. There is a need for physical and psychological rehabilitation after discharge from trauma intensive care.


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