Patient-reported outcomes of occipitocervical and atlantoaxial fusions in children

OBJECTIVE There is limited literature on patient-reported outcomes (PROs) and health-related quality of life (HRQOL) outcomes in pediatric patients undergoing surgery for craniovertebral junction pathology. The aim of the present study was to assess surgical and quality of life outcomes in children who had undergone occipitocervical or atlantoaxial fusion. METHODS The authors retrospectively reviewed the demographics, procedural data, and outcomes of 77 consecutive pediatric patients who underwent posterior occipitocervical or atlantoaxial fusion between 2008 and 2015 at Texas Children's Hospital. Outcome measures (collected at last follow-up) included mortality, neurological improvement, complications, Scoliosis Research Society Outcomes Measure–22 (SRS-22) score, SF-36 score, Neck Disability Index (NDI), and Pediatric Quality of Life Inventory (PedsQL). Multivariate linear regression analysis was performed to identify factors affecting PROs and HRQOL scores at follow-up. RESULTS The average age in this series was 10.6 ± 4.5 years. The median follow-up was 13.9 months (range 0.5–121.5 months). Sixty-three patients (81.8%) were treated with occipitocervical fusion, and 14 patients (18.1%) were treated with atlantoaxial fusion. The American Spinal Injury Association (ASIA) grade at discharge was unchanged in 73 patients (94.8%). The average PRO metrics at the time of last follow-up were as follows: SRS-22 score, 4.2 ± 0.8; NDI, 3.0 ± 2.6; the parent's PedsQL (ParentPedsQL) score, 69.6 ± 22.7, and child's PedsQL score, 75.5 ± 18.7. Multivariate linear regression analysis revealed that older age at surgery was significantly associated with lower SRS-22 scores at follow-up (B = −0.06, p = 0.03), and the presence of comorbidities was associated with poorer ParentPedsQL scores at follow-up (B = −19.68, p = 0.03). CONCLUSIONS This study indicates that occipitocervical and atlantoaxial fusions in children preserve neurological function and are associated with acceptable PROs and ParentPedsQL scores, considering the serious nature and potential for morbidity in this patient population. However, longer follow-up and disease-specific scales are necessary to fully elucidate the impact of occipitocervical and atlantoaxial fusions on children.

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Predictors of deterioration of symptoms and quality of life in patients with sarcoidosis

Medicinski pregled ◽

10.2298/mpns13s1077g ◽

2013 ◽

Vol 66 (suppl. 1) ◽

pp. 77-83

Author(s):

Branislav Gvozdenovic ◽

Violeta Mihailovic-Vucinic ◽

Mira Vukovic ◽

Aleksandar Gvozdenovic ◽

Aleksandra Dudvarski-Ilic ◽

...

Keyword(s):

Quality Of Life ◽

Body Mass Index ◽

Body Mass ◽

Linear Regression Analysis ◽

Forced Expiratory Volume ◽

Measuring Instruments ◽

Multivariate Linear Regression Analysis ◽

Everyday Functioning ◽

Patient Reported

Introduction. The most frequent clinical outcomes in sarcoidosis patients are typically focused on the objective measurements of functions of the involved organs, but, generally, they do not take into account the individual perception of patients? everyday functioning. The aim of this study was to determine the type of association between the subjective disease outcomes and other objective conventional parameters in patients with sarcoidosis. Material and Methods. In the cross-sectional study including 172 sarcoidosis patients (122 females), quality of life was measured by a generic instrument, i.e. fifteen-dimensional measure of health-related quality of life together with a respiratory specific instrument, i.e. St George?s Respiratory Questionnaire; symptoms of fatigue were measured by Fatigue Scale and dyspnea was measured by the Basal Dyspnea Index. Body-mass index and the course of the disease (acute vs. chronic) were also evaluated. Pulmonary function was assessed by spirometry. Results. Acute sarcoidosis was present in 48 (28%) patients. Mean body mass index was 27.01?5.2. Only 20 (12%) patients had lower forced expiratory volume in one second values (<80%) that indicated the existance of obstructive ventilatory impairment. Multivariate linear regression analysis revealed that body mass index, clinical course of disease and spirometric parameter forced expiratory volume in one second were the significant predictors (R2=0.929, p<0.01) of sarcoidosis related fatigue (B=0.061, B=0.406, B=0.452; respectively). Body mass index and forced expiratory volume in one second were the only parameters that significantly predicted both patients? quality of life (R2=0.932; B=0.017, B=0.263) and dyspnea (R2=0.847; B=0.025, B=0.668). Conclusions. It is important to measure both subjective patient-reported outcomes and objective disease parameters in sarcoidosis since they represent different aspects of the disease. All applied measuring instruments for the examined subjective outcomes demonstrated good measuring properties.

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Determinants of health-related quality of life in colon cancer patients include stoma and smoking habits, but not type of surgery

10.21203/rs.2.13676/v1 ◽

2019 ◽

Author(s):

Catarina Tiselius ◽

Andreas Rosenblad ◽

Eva Strand ◽

Kennet Smedh

Keyword(s):

Quality Of Life ◽

Colon Cancer ◽

Regression Analysis ◽

Cancer Patients ◽

Linear Regression Analysis ◽

Health Related Quality ◽

Related Quality ◽

Health Related

Abstract Background: Health-related quality of life (HRQoL) has gained increased attention in cancer care. Studies have shown that poor QoL might worsen the cancer related prognosis. The aim of this study was to investigate HRQoL in patients with colon cancer and to compare data with reference values from the general population in Sweden at diagnosis (baseline) and at six months of follow-up. Methods : This was a prospective population-based study of colon cancer patients from Västmanland County, Sweden, included between March 2012 and September 2016. HRQoL was measured using the cancer-specific EORTC QLQ-C30 questionnaire. Data on HRQoL was compared with Swedish population reference values. Multiple linear regression analysis adjusted for age, sex, body mass index (BMI), American Society of Anaesthesiology (ASA) physical status classification, emergency/elective surgery, and resection with/without a stoma and tumour stage (TNM), was used. Results : A total of 67% (376/561) of all incident colon cancer patients (196 [52.1%] females) were included. Mean (range) age was 73 (30-96) years. The univariate analysis showed that patients with colon cancer had worse QoL (8/15 parameters) compared with a Swedish reference population both at baseline and at 6 months follow-up. Furthermore, linear regression analysis showed that patients with more comorbidity (ASA 3 and 4), smokers and patients planned to be operated on with a stoma, were at higher risks for poor QoL than the other included patients. Conclusions : The reported determinants of HRQoL may be used to identify risk groups and enable individualized care for patients that need more support from health care.

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Digital health application for real-time patient-reported outcomes during prostate radiotherapy.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.2_suppl.157 ◽

2016 ◽

Vol 34 (2_suppl) ◽

pp. 157-157 ◽

Cited By ~ 2

Author(s):

Daniel Xiao Yang ◽

Jackson Thea ◽

Yi An ◽

James B. Yu

Keyword(s):

Quality Of Life ◽

Real Time ◽

Mobile Applications ◽

Mobile Application ◽

Patient Reported Outcomes ◽

Digital Health ◽

Prostate Radiotherapy ◽

Patient Reported

157 Background: The use of digital health technology, including mobile applications, in the clinical setting is becoming increasingly more prevalent. Such technology is currently being explored as clinical research tools. While the side effects of prostate radiotherapy are well documented after treatment, there remains a paucity of data on patient-reported outcomes and changes in quality of life (QOL) during the treatment period. Therefore, mobile applications represent a practical platform to enable patient reporting in real-time during prostate radiotherapy. Methods: Using an existing open source code framework (Apple ResearchKit), we developed a novel mobile application that enables prostate cancer patients to report, either during or immediately following daily radiation treatment, changes in urinary, bowel, sexual, and hormonal QOL domains. The mobile application utilizes validated questions from the Expanded Prostate Index Composite for Clinical Practice (EPIC-CP) Survey, and allows for survey responses to be tracked over time throughout the treatment period and at routine follow up. Results: For the initial phase of our study, we are currently piloting the mobile application at a single institution with a goal of accruing 50 patients. Study results will be compared to data from traditional surveys, which are available at follow-up but impracticable for real-time symptom reporting. By ASCO 2016 Genitourinary Cancers Symposium, we plan to begin the second phase of our study where any patient can enroll online through a mobile software distribution platform (Apple App Store). Conclusions: We demonstrate the feasibility of using a mobile application to enable patients to report quality of life changes in real-time during prostate radiotherapy. Moreover, our application facilitates clinical trials where patient data collection can be automated and completed at scale. Future prospective studies are planned to evaluate validity of clinical trial data gathered through such methodology.

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Patient-reported outcomes in congenital cardiac disease: are they as good as you think they are?

Cardiology in the Young ◽

10.1017/s1047951110001216 ◽

2010 ◽

Vol 20 (S3) ◽

pp. 143-148 ◽

Cited By ~ 10

Author(s):

Philip Moons

Keyword(s):

Quality Of Life ◽

Cardiac Disease ◽

Patient Reported Outcomes ◽

Well Being ◽

Main Question ◽

Congenital Cardiac Disease ◽

Patient Reported ◽

Satisfaction With Treatment

AbstractPatient-reported outcomes are “any outcome based on data provided by patients or patient proxy as opposed to data provided from other sources”. Examples of patient-reported outcomes are quality of life, well-being, functional status, symptoms, adherence to treatment, satisfaction with treatment, and utility or preference-based measures. The main question of this manuscript is whether patient-reported outcomes in patients with congenital cardiac disease are as good as we think they are. In general, we could say yes, because numerous studies show that patients with congenital cardiac disease have an excellent quality of life. By contrast, we could say no, because patients generally overestimate their functioning, and up to two out of three patients are not compliant with the prescribed therapy or recommendations for follow-up. However, most importantly, we have to say that we do not know whether the patient-reported outcomes are good, because research with patient-reported outcomes in congenital cardiac disease is limited. Hence, patient-reported outcomes should be a priority on the agenda for research in the domain of congenital cardiac disease.

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Assessment of patient-reported outcomes after polytrauma: protocol for a systematic review

BMJ Open ◽

10.1136/bmjopen-2017-017571 ◽

2018 ◽

Vol 8 (3) ◽

pp. e017571 ◽

Cited By ~ 2

Author(s):

Irmela Gnass ◽

Michaela Ritschel ◽

Silke Andrich ◽

Silke Kuske ◽

Kai Moschinski ◽

...

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Activities Of Daily Living ◽

Daily Living ◽

Patient Reported Outcomes ◽

Short Term ◽

Patient Reported

IntroductionSurvivors of polytrauma experience long-term and short-term burden that influences their lives. The patients’ view of relevant short-term and long-term outcomes should be captured in instruments that measure quality of life and other patient-reported outcomes (PROs) after a polytrauma. The aim of this systematic review is to (1) collect instruments that assess PROs (quality of life, social participation and activities of daily living) during follow-up after polytrauma, (2) describe the instruments’ application (eg, duration of period of follow-up) and (3) investigate other relevant PROs that are also assessed in the included studies (pain, depression, anxiety and cognitive function).Methods and analysisThe systematic review protocol is developed in line with the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols statement. MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Cochrane Central Register of Controlled Trials and the trials registers ClinicalTrials.gov and WHO International Clinical Trials Registry Platform will be searched. Keywords, for example, ‘polytrauma’, ‘multiple trauma’, ‘quality of life’, ‘activities of daily living’ or ‘pain’ will be used. Publications published between January 2005 and the most recent date (currently: August 2016) will be included. In order to present the latest possible results, an update of the search is conducted before publication. The data extraction and a content analysis will be carried out systematically. A critical appraisal will be performed.Ethics and disseminationFormal ethical approval is not required as primary data will not be collected. The results will be published in a peer-reviewed publication.PROSPERO registration numberCRD42017060825.

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Adherence to COVID-19 Preventive Measures among Dental Care Workers in Vietnam: An Online Cross-Sectional Survey

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph19010481 ◽

2022 ◽

Vol 19 (1) ◽

pp. 481

Author(s):

Tai Tan Tran ◽

Thang Van Vo ◽

Tuyen Dinh Hoang ◽

Minh Vu Hoang ◽

Nhu Thi Quynh Tran ◽

...

Keyword(s):

Quality Of Life ◽

Regression Analysis ◽

Dental Care ◽

Preventive Measures ◽

Linear Regression Analysis ◽

Multivariate Linear Regression Analysis ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Care Workers

An online cross-sectional survey using a “snowball” sampling method was carried out to assess the adherence to COVID-19 preventive measures among dental care workers (DCWs) during the pandemic. Six questions concerning the COVID-19 preventive guidelines issued by the Vietnam Ministry of Health were used to evaluate DCWs’ adherence to preventive measures at dental care clinics. The quality of life of DCWs was assessed using the WHO-5 questionnaire and was defined as low if the total score was less than 13 points. Factors relating to adherence to COVID-19 prevention measures of DCWs were determined by multivariate linear regression analysis. In total, 514 DCWs completed the questionnaire. A total of 37% DCWs rated their quality of life as low. Regression analysis suggested that older age, a better quality of life, living in an urban area, and training on COVID-19 prevention were associated with better adherence to COVID-19 preventive measures, while being a dentist and lack of personal protective equipment was associated with less adherence to COVID-19 preventive measures. The pandemic had a significant negative impact on the physical and mental health of DCWs. Therefore, specific national guidelines for the prevention and control of the spread of COVID-19 in dental facilities should be issued.

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Adherence to COVID-19 preventive measures among dental care workers in Vietnam: an online cross-sectional survey

10.21203/rs.3.rs-1160815/v1 ◽

2021 ◽

Author(s):

Tai Tan Tran ◽

Thang Van Vo ◽

Tuyen Dinh Hoang ◽

Minh Vu Hoang ◽

Nhu Thi Quynh Tran ◽

...

Keyword(s):

Quality Of Life ◽

Regression Analysis ◽

Dental Care ◽

Preventive Measures ◽

Linear Regression Analysis ◽

Multivariate Linear Regression Analysis ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Care Workers

Abstract An online cross-sectional survey using a "snowball" sampling method was carried out to assess the adherence to COVID-19 preventive measures among dental care workers (DCWs) during the pandemic. Six questions concerning the COVID-19 preventive guidelines issued by the Vietnam Ministry of Health were used to evaluate DCWs adherence to preventive measures at dental care clinics. The quality of life of DCWs was assessed using the WHO-5 questionnaire and was defined as low if the total score was less than 13 points. Factors relating to adherence to COVID-19 prevention measures of DCWs were determined by multivariate linear regression analysis. In total, 514 DCWs completed the questionnaire. 37% DCWs rated their quality of life as low. Regression analysis suggested that older age, better quality of life, living in an urban area, and training on COVID-19 prevention were associated with better adherence to COVID-19 preventive measures, while being a dentist and lack of personal protective equipment was associated with less adherence to COVID-19 preventive measures. The pandemic had a significant negative impact on the physical and mental health of DCWs. Therefore, specific national guidelines for the prevention and control of the spread of COVID-19 in dental facilities should be issued.

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P-BN11 Patient Reported Outcomes of Phasix™ ST Mesh for Laparoscopic Hiatal Hernia Repair

British Journal of Surgery ◽

10.1093/bjs/znab430.012 ◽

2021 ◽

Vol 108 (Supplement_9) ◽

Author(s):

Yan Yu Tan ◽

Sri Vishnu Thulasiraman ◽

Phanibhushana Munipalle ◽

Yirupaiahgari Viswanath

Keyword(s):

Quality Of Life ◽

Hernia Repair ◽

Hiatal Hernia ◽

Patient Reported Outcomes ◽

Hiatal Hernia Repair ◽

Complication Rates ◽

Laparoscopic Hiatal Hernia Repair ◽

Patient Reported

Abstract Background Laparoscopic hiatal hernia repair continues to suffer from high recurrence rates, which has prompted the use of mesh reinforcement by some surgeons. Use of mesh however remains controversial due to its association with complications such as erosion, fibrosis and oesophageal stenosis. Biosynthetic Poly-4-Hydroxybutyrate Phasix™ ST mesh is an emerging technology which combines the durability of synthetic mesh with the remodelling characteristics of biologic mesh and includes an anti-adhesion hydrogel barrier. There is a paucity of patient reported outcome data for Phasix™ ST mesh. This study evaluates early patient reported outcomes following laparoscopic hiatal hernia repair with Phasix™ ST mesh. Methods Adult patients undergoing laparoscopic hiatal hernia repair with Phasix™ ST mesh between July 2020 to June 2021 at our institution were identified. Prospective data, including demographic data and complication rates, was collected from electronic and paper medical records. The 12-Item Short Form Survey (SF-12) was administered to assess quality of life pre-operatively and post-operatively with a minimum 30-day follow-up. Results Fourteen patients (12 female, one male) were included with a median age of 66 years (range 52-79). There were no intraoperative complications, mesh-related complications, re-operation, re-admission, or recurrence at a median follow-up of 4 months (IQR 4.0). Median physical health component (PHC) score was 32.7 (IQR 6.2) at baseline and increased to 41.6 (IQR 13.7) post-operatively. Median difference in PHC score was +11.4 (IQR 10.7). Median mental health component (MHC) score was 39.8 (IQR 12.5) at baseline and increased to 57.4 (IQR 8.2) post-operatively. Mean difference in MHC score was +17.7 (IQR 15.9). Conclusions To our knowledge, this is the first report of outcomes on the use of Phasix™ ST mesh for laparoscopic hiatal hernia repair in the United Kingdom. Our study found that it is associated with improvements in both physical and mental quality of life in the short-term post-operative follow-up, although there is some variation in the degree of improvement reported.

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The Effects of Azacitidine on Quality of Life Measured Longitudinally In MDS Patients Treated at a Tertiary Care Center

Blood ◽

10.1182/blood.v116.21.2571.2571 ◽

2010 ◽

Vol 116 (21) ◽

pp. 2571-2571

Author(s):

Sarah A. Ingber ◽

Kim Thompson ◽

Adam Lam ◽

Alex Mamedov ◽

Liying Zhang ◽

...

Keyword(s):

Quality Of Life ◽

Regression Analysis ◽

Linear Regression ◽

Predictive Factors ◽

Physical Functioning ◽

Linear Regression Analysis ◽

Clinically Significant ◽

Over Time

Abstract Abstract 2571 Background: Myelodysplastic syndromes (MDS) are clonal hematopoetic stem cell disorders characterized by ineffective hematopoiesis and a propensity to develop AML predicted by conventional scoring systems such as the International Prognostic Scoring System (IPSS). Azacitidine (AZA), a hypomethylating agent is indicated for high and high intermediate IPSS scores based on survival and leukemia-free survival benefits demonstrated in randomized trials (Silverman 2002, 2006, Fenaux 2009). Additionally, improvements in fatigue, dyspnea, physical functioning, affect and psychological distress were demonstrated in the CALGB study (Kornblith 2002). We previously showed that most symptom and functional domains of quality of life (QOL) are impaired in MDS patients measured by several instruments and are primarily determined by Hb and transfusion dependence (Buckstein 2009). With the exception of the CALGB paper, there is a paucity of data assessing the ‘real world' QOL in MDS patients treated with AZA longitudinally. All consented patients with MDS followed at our center have QOL assessed every 3–4 months as part of routine care. We present the QOL scores of patients on AZA as assessed by the EORTC QLQ-C30, EQ-5D and a global fatigue scale. Methods: Clinically significant score differences were considered to be 10 points for the EORTC, and 0.05 for the EQ-5D. Linear regression analysis was used to detect each QOL change over time. Log-transformation was applied for all QOL scores to normalize the distribution. To search for significant predictive factors of each QOL, linear regression analysis (for continuous predictive factors) or Analysis of Variance (for binary predictive factors) was conducted at baseline. A two-sided p-value less than 0.05 was considered statistically significant. Results: 30 patients in our database were/are currently treated with AZA. The median age was 73 years, with 63% being male. Of the 26 patients with measureable IPSS scores, 54% were high/high intermediate risk. Seventy percent had a Hb <100 at the time of baseline QOL prior to AZA, 50% had a ferritin ≥ 1000 ug/L, 65% were transfusion dependent (TD) as defined by the WPSS (Malcovati 2007). Sixty-seven percent of patients were on AZA for ≥ 4 cycles of treatment. Of the 19 TD patients only 3 became transfusion independent (TI) on AZA and 3 patients who were TI at baseline became TD. Of the 30 patients, 20 have QOL data available for analysis with a median follow up time of 10 weeks (range 0–80) and an interval duration between QOL assessments of 15.5 weeks. Fourteen out of twenty patients have serial QOL assessments, 5 with two, 9 with three or more. The only clinically significant improvements were observed with the EORTC physical functioning and fatigue subscales but constipation scores were higher and global health status/QOL deteriorated over time (Figure 1). At baseline assessment ferritin ≥ 1000 ug/L was negatively associated with physical functioning (p=.0007), cognitive functioning (p=.0012), global QOL (p=.0048) and global fatigue (p=.0003) while transfusion dependence was not predictive of QOL scores. No significant clinical improvements were detected by linear regression or ANOVA over time, but constipation worsened using both models. The health utilities (determined by the summary score of the EQ-5D) are seen in table 1. Conclusion: Many clinically important function and symptom domains of 3 different QOL instruments have not changed significantly over time in our patients receiving AZA. This is likely explainable by the limited sample size and serial number of assessments in our patients. Our present patient population is higher risk than that tested in the CALGB study and our previous report on the MDS patients in our database. Furthermore, we have yet to see the rates of transfusion independence that might be associated with improved QOL. The negative association of increased ferritin with numerous symptom and function scores may simply be a surrogate for the extent of transfusion dependence. We hope that with longer follow up and larger sample size, we will be able to reproduce the QOL benefits observed in the pivotal CALGB trial (Kornblith 2002). Disclosure: No relevant conflicts of interest to declare.

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Health-Related Quality of Life in Stroke Survivors in Relation to the Type of Inpatient Rehabilitation in Serbia: A Prospective Cohort Study

Medicina ◽

10.3390/medicina56120666 ◽

2020 ◽

Vol 56 (12) ◽

pp. 666

Author(s):

Natasa K. Rancic ◽

Milan N. Mandic ◽

Biljana N. Kocic ◽

Dejan R. Veljkovic ◽

Ilija D. Kocic ◽

...

Keyword(s):

Quality Of Life ◽

Regression Analysis ◽

Linear Regression Analysis ◽

Inpatient Rehabilitation ◽

Stroke Survivors ◽

Multivariate Linear Regression Analysis ◽

Health Related Quality ◽

Related Quality ◽

Health Related

Background and objectives: Health-related quality of life after stroke is an important public health issue. The objective of the study was to investigate the relationship between the perceived health-related quality of life in stroke survivors in relation to the type of inpatient rehabilitation. Materials and Methods: Using a random selection method out of a total of 688 patients, every fourth survivor who had a stroke in the period from 1 January 2017 to 31 December 2019 was selected from the admission protocol of the Clinic for Rehabilitation and Physical Medicine of the Clinical Centre Niš, Serbia. A total of 160 first-ever stroke survivors were included (80 underwent additional inpatient rehabilitation and 80 underwent only inpatient rehabilitation in a tertiary health institution) in a twelve-month prospective study. The EuroQuol-5 Dimension (EQ5D) questionnaire and Stroke Impact Scale were used for the assessment. Multivariate linear regression analysis was done. Results: Multivariate linear regression analysis showed that additional inpatient rehabilitation from six up to eight weeks after discharge was significantly associated with better self-reported health condition by 3.9 times (from 1.9 to 8.2), significantly decreased the ranks of EQ5D by 1.78 times (from 1.02 to 3.11), and showed a higher health-related quality of life. We determined a significant increase of strength, emotions, mobility, and participation role in survivors who underwent additional inpatient rehabilitation compared with those who did not. Conclusions: There was a significant difference in health-related quality of life perceived by stroke survivors who underwent additional hospital rehabilitation in relation to those who underwent only inpatient rehabilitation.

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