scholarly journals Disability and Symptom Burden Among the Very Old: Comparison of Survivors and Decedents

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 230-231
Author(s):  
Xinran Liu ◽  
Steven Albert
Keyword(s):  
Symptom Burden ◽  
Time Of Death ◽  
Very Old ◽  
Global Quality ◽  
Global Quality Of Life ◽  
Severity Of Disability ◽  
Disability Prevalence ◽  
Loss Of Appetite

Abstract How does disability and symptom burden among the very old differ between those who die and those who do not die over 12 months? We explored patterns of disability and symptom burden in the Health ABC cohort study, which involved quarterly phone interviews in 2011-14 (years 15-17). A proxy completed the interview when the proband was unable to participate. We identified a sample of 291 decedents with at least 1-year of follow-up before death and matched a 1:1 sample of survivors at the time of death by race, sex, and age (within ±3 years). 252 decedents (age 90.0±3.03, 65.1% Black, 52.4% female) and 288 survivors (age 90.1±3.03, 64.9% Black, 52.4% female) with at least 3 quarterly interviews were included for analysis. Decedents had a higher proportion of proxy-reported interviews compared to survivors (40.9%vs16.0%, P<0.01). Disability prevalence among decedents was significantly higher (P<0.01) compared to survivors (using an assisted walking device, 62.3%vs37.4%; difficulty getting in/out of bed, 32.0%vs19.4%; difficulty bath/shower, 28.9%vs10.0%; difficulty dressing, 19.0%vs8.7%). Decedents and survivors differed significantly (P<0.05) in self-reported number of symptoms (2.35vs1.78), severity of disability due to shortness of breath (4.09vs2.04), constipation (3.97vs1.74), and difficulty concentrating (1.98vs1.25). Decedents also had a significant higher score (P<0.01) on self-reported loss of appetite (2.24vs1.91) and worse global quality of life rating (3.04vs2.64), compared to survivors. The patterns were similar in proxy-reported group and in the group with a combination of self-and proxy-reported interviews. Even in very late old age, disability and symptom burden increase with the approach of death.

Primary and Secondary Fibromyalgia Are The Same: The Universality of Polysymptomatic Distress

2018 ◽  
Vol 46 (2) ◽  
pp. 204-212 ◽  
Author(s):  
Frederick Wolfe ◽  
Brian Walitt ◽  
Johannes J. Rasker ◽  
Winfried Häuser
Keyword(s):  
Health Assessment ◽  
Symptom Burden ◽  
Symptom Severity Scale ◽  
Global Quality ◽  
Global Quality Of Life ◽  
Comparison Groups ◽  
Component Scores ◽  
Assessment Questionnaire ◽  
Questionnaire Disability

Objective.Polysymptomatic distress (PSD) is the underlying metric of fibromyalgia (FM), and levels of PSD can identify criteria-positive FM with > 90% accuracy. We used levels of the PSD scale to test whether symptom levels in primary FM (PFM) and secondary FM (SFM) were the same and whether symptoms were equivalent in persons not meeting FM criteria.Methods.We studied 1525 patients with a clinical diagnosis of FM and 12,037 patients with rheumatoid arthritis (RA). We used regression models to compare patients with potential and actual PFM to RA patients with potential and actual SFM for 17 key clinical variables.Results.When controlled for PSD values, the widespread pain index, symptom severity scale, and pain, global, quality of life, and physical and mental component scores were essentially the same or only slightly different in PFM and SFM. Health Assessment Questionnaire-Disability Index scores were slightly higher in SFM (0.21 units), as was the painful joint count (1.6 joints). Overall, higher PSD scores were associated with more severe symptoms or abnormal status. PSD scores in patients not satisfying FM criteria and in patients satisfying criteria operated similarly.Conclusion.PFM and SFM are equivalent regarding symptom burden. PSD scores are more informative about severity and severity within diagnosis than dichotomization into FM/non-FM. Studies of FM versus “healthy individuals,” or FM versus other diseases, are inherently defective, while studies of FM and PSD in RA offer the opportunity to have meaningful comparison groups, because there are no readily available unbiased appropriate controls for PFM.

Temozolomide Versus Procarbazine, Lomustine, and Vincristine in Recurrent High-Grade Glioma

2010 ◽  
Vol 28 (30) ◽  
pp. 4601-4608 ◽  
Author(s):  
Michael Brada ◽  
Sally Stenning ◽  
Rhian Gabe ◽  
Lindsay C. Thompson ◽  
David Levy ◽  
...  
Keyword(s):  
Dose Intensity ◽  
Progression Free Survival ◽  
High Grade Glioma ◽  
High Grade ◽  
Global Quality ◽  
Prospective Comparison ◽  
Major Toxicity ◽  
Global Quality Of Life

Purpose Temozolomide (TMZ) is an alkylating agent licensed for treatment of high-grade glioma (HGG). No prospective comparison with nitrosourea-based chemotherapy exists. We report, to our knowledge, the first randomized trial of procarbazine, lomustine, and vincristine (PCV) versus TMZ in chemotherapy-naive patients with recurrent HGG. Patients and Methods Four hundred forty-seven patients were randomly assigned to PCV (224 patients) or TMZ (sub–random assignment: TMZ-5 [200 mg/m2 for 5 days, 112 patients] or TMZ-21 [100 mg/m2 for 21 days, 111 patients]) for up to 9 months or until progression. The primary outcomes were survival (PCV v TMZ) and 12-week progression-free survival (PFS; TMZ-5 v TMZ-21). This study is registered as ISRCTN83176944. Results Percentages of patients completing 9 months of treatment in the PCV, TMZ-5, and TMZ-21 arms were 17%, 26%, and 13%, respectively. Major toxicity was similar across all three groups. With a median follow-up time of 12 months and 382 deaths, there was no clear survival benefit when comparing PCV with TMZ (hazard ratio [HR], 0.91; 95% CI, 0.74 to 1.11; P = .350). For TMZ-5 versus TMZ-21, 12-week PFS rates were similar (63.6% and 65.7%, respectively; P = .745), but TMZ-5 improved overall PFS (HR, 1.38; 95% CI, 1.05 to 1.82; P = .023), survival (HR, 1.32; 95% CI, 0.99 to 1.75; P = .056), and global quality of life (49% v 19% improved > 10 points at 6 months, respectively; P = .005). Conclusion Although TMZ (both arms combined) did not show a clear benefit compared with PCV, comparison of the TMZ schedules demonstrated that the 21-day schedule was inferior to the 5-day schedule in this setting. This challenges the current understanding of increasing TMZ dose-intensity by prolonged scheduling.

scholarly journals Factors During Pregnancy, Delivery and Birth Affecting Global Quality of Life of the Adult Child at Long-term Follow-up. Results from the Prospective Copenhagen Perinatal Birth Cohort 1959-61

2005 ◽  
Vol 5 ◽  
pp. 933-941 ◽  
Author(s):  
Søren Ventegodt ◽  
Trine Flensborg-Madsen ◽  
Niels Jørgen Andersen ◽  
Joav Merrick
Keyword(s):  
Quality Of Life ◽  
Birth Cohort ◽  
Adult Child ◽  
Well Being ◽  
Global Quality ◽  
Global Quality Of Life ◽  
Pregnancy And Delivery ◽  
In Pregnancy

This paper presents a prospective cohort study, where we explore associations between pregnancy, delivery and the global quality of life (QOL) of the adult child 31-33 years later. The data is from the Copenhagen Perinatal Birth Cohort 1959-61 using two sets of questionnaires send to 7,222 persons: one filled out by physicians during pregnancy and delivery, while the follow-up questionnaire was completed by the adult children 31-33 years later. The main outcome measures were objective factors describing pregnancy and delivery along with global quality of life, including: Well-being, life satisfaction, happiness, fulfilment of needs, experience of life's temporal and spatial domains, expression of life's potentials and objective measures. Results showed two main factors in pregnancy that seemed to be associated with a reduced quality of life for the child 31-33 years later: the mother's smoking habits and the mother's medication–especially painkillers and different psychopharmacological drugs with the association being most prevalent early in pregnancy. Considering what can and do go wrong during the various stages of labour and delivery and considering how few connections we found between the factors examined and the later global QOL, it seems that the child is remarkably resilient to external influences during pregnancy and delivery concerned with global QOL, as an adult.

Quality of Life Assessment for Patients with Multiple Myeloma after Tandem Autologous Stem Cell Transplantation

Blood ◽  
2008 ◽  
Vol 112 (11) ◽  
pp. 2398-2398
Author(s):  
Alhossain Khalafallah ◽  
Kristina McDonnell ◽  
Susie Shaw ◽  
Hizb Dawar ◽  
Michael Beamish ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Myeloma ◽  
Stem Cell ◽  
Stem Cell Transplantation ◽  
Post Transplant ◽  
Global Quality ◽  
Global Quality Of Life ◽  
The Mean

Abstract Background: A sole focus on life prolongation does not adequately reflect the tolerability and acceptability of a proposed intervention on the patient’s perceived quality of life. As healthcare providers, our primary concern is to our patients and therefore, we should utilise measures of overall survival in conjunction with quality of life in order to deliver the best possible patient outcomes as guided by an individualised approach. Patients and methods: We assessed patients diagnosed with multiple myeloma who were undergoing tandem autologous stem cell transplantation (ASCT) according to our protocol at the Launceston General Hospital (LGH) from March 2006 to March 2008. Patients aged below 60 years received a conditioning regimen with 140mg/m2 Melphlan, while patients above 60 years received 100mg/m2 Melphalan. Of the twenty recruited patients with multiple myeloma undergoing tandem ASCT, 17 were eligible for assessment of quality of life. The median age was 49 years (range 37–70 years). A full patient profile was collected including demographic and medical data and risk factors for multiple myeloma. Assessment of quality of life was made using The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life QLQ-C30 questionnaire, conducted via interviews directly after each transplant and regularly thereafter every 3 months. The tandem transplants were well tolerated without any reported cases of mucositis or nausea or vomiting that requires parenteral nutrition. Results: Assessment of the gastrointestinal symptoms during both transplants showed that about 70% of the patients suffered from some degree of nausea and vomiting as well as loss of appetite compared to only 6–10% post transplant on further follow up. About 57% of patients suffered mild to moderate constipation and 35% complained of diarrhoea during both transplants. In the first quarterly follow up post transplant 45% of the patients had mild constipation most likely related to ongoing medication for myeloma and pain and no patients complained of diarrhoea. Assessment of patient role showed that 90% of patients had moderate to severely-affected normal social activities during both transplants with an improvement to 20–40% impairment after transplant in further quarterly follow up mainly due to chronic disease. Approximately 55% of patients experienced emotional disability during both transplants compared to 20% post transplant. None of them required specific treatment. Interestingly, about 70% reported significant financial difficulties during transplants compared to 40% after transplant follow up. About 50% of patients after each transplant have experienced moderate fatigue, mild dyspnoea and mild physical impairment. In the 3 monthly follow up this declined to 20%. Also, 50% of patients did complain to some degree of insomnia during both transplants with further improvement to 13 % after transplant. Assessment of quality of life revealed that the mean Global Health measure to be 3.44 (1=very poor, 7=excellent), and a mean Global Quality of Life of 3.61. There were no statistical differences in both scores between both transplants. However, the mean Global Health score significantly improved to 4.50 and the mean Global Quality of Life to 4.71 at quarterly follow-up. In summary, our analysis shows that dose-modified tandem transplant therapy is well tolerated with acceptable toxicity and side effects albeit the significant changes in quality of life during both transplants. Nevertheless, the post transplant follow up showed significant improvement in the quality of life that certainly reflects positively in the overall disease outcome.

scholarly journals Symptom Burden of Patients with Advanced Pancreas Cancer (APC): A Provincial Cancer Institute Observational Study

2021 ◽  
Vol 28 (4) ◽  
pp. 2789-2800
Author(s):  
Stephanie Lelond ◽  
Julie Ward ◽  
Pascal J. Lambert ◽  
Christina A. Kim
Keyword(s):  
Cox Regression ◽  
Advanced Pancreatic Cancer ◽  
Symptom Burden ◽  
Distress Score ◽  
Ambulatory Oncology ◽  
High Prevalence ◽  
Associated Symptoms ◽  
Report Symptom

Patients with advanced pancreatic cancer (APC) experience many disease-related symptoms. ESAS-r measures the severity of 9 symptom domains and has been validated for use in the ambulatory oncology setting. We aimed to describe symptom burden at baseline for patients with APC treated with modern chemotherapy (CT), and to determine whether symptom burden at baseline is prognostic. Patients diagnosed with APC between 2012–2016, treated with ≥1 cycle of CT, who completed ≥1 ESAS-r were identified. Descriptive statistics were used to report symptom burden and common moderate-to-severe symptoms. A joint model was used to describe the trajectory of ESAS-r during follow-up while controlling for death. Multivariable Cox regression was used to identify independent predictors of death. Of 123 patients identified, the median age was 65 and 61% had metastatic disease. The median baseline ESAS-r total symptom distress score (TSDS) was 24. A total of 86% of patients had at least one symptom score of ≥4 at baseline, with the most common being: fatigue, nausea, anxiety, and shortness of breath. Median overall survival was 10.2 months. Baseline TSDS was not predictive for worse survival in the era of modern CT. Patients with APC have a high burden of cancer-associated symptoms and a high prevalence of moderate-to-severe symptoms. Early intervention has the potential to improve quality of life in this group of patients and should be investigated.

scholarly journals Measurement of Quality of Life VII. Statistical Covariation and Global Quality of Life Data: The Method of Weight-Modified Linear Regression

2003 ◽  
Vol 3 ◽  
pp. 1020-1029 ◽  
Author(s):  
Soren Ventegodt ◽  
Joav Merrick
Keyword(s):  
Quality Of Life ◽  
Linear Regression ◽  
Scientific Community ◽  
Population Studies ◽  
Life Data ◽  
Global Quality ◽  
Global Quality Of Life ◽  
Psychometric Measures ◽  
Exact Size

Existing standard statistical procedures do not seem to fulfill the needs of the researcher in global quality-of-life (QOL) research, because the most interesting question seems to be the exact size of statistical covariations. A method is necessary if we are to isolate the most important factors connected to quality of life among the thousands of possible factors in life. We have developed a new procedure we call �weight-modified linear regression�. Unfortunately as demonstrated in the discussion, the procedure is not totally without problems and weaknesses. In spite of the critique, we believe the procedure to be valid for the purpose of estimating the size of the covariation in population studies including psychometric measures of global quality of life. As we need to be certain that the procedure is valid, we hereby invite the scientific community to give us further critique of the method and suggestions for its improvement.

scholarly journals Fertility Related Quality of Life in Primary Infertile Couples: A Comparative Study from Eastern India

2017 ◽  
Vol 5 (1) ◽  
Author(s):  
Swarnali Bose ◽  
Bharati Roy
Keyword(s):  
Quality Of Life ◽  
Infertile Couple ◽  
Psychological Burden ◽  
Primary Infertility ◽  
Global Quality ◽  
Global Quality Of Life ◽  
The Family ◽  
Related Quality ◽  
Written Informed Consent

Fertility is considered as a marital responsibility in most the communities and a kind of social respectability for couples. The societal and parental pressures for propagation of the family name can also place a psychological burden on the infertile couple and may significantly affect quality of life. The present study aimed to investigate the gender differences in fertility related quality of life in primary infertility. 30 couples with primary infertility were recruited for the study after a written informed consent. Hindi version of FertiQoL was applied to all participants. Males had significantly better emotional, relational, social and global quality of life (QoL) as compared to females. Tolerability to infertility related problems was significantly better in females compared to males. This study found that primary infertility has extensive negative repercussions on the QOL of women as compared to males.

scholarly journals Impact of Disease-Specific Fears on Pulmonary Rehabilitation Trajectories in Patients with COPD

2019 ◽  
Vol 8 (9) ◽  
pp. 1460 ◽  
Author(s):  
Thomas Janssens ◽  
Zora Van de Moortel ◽  
Wolfgang Geidl ◽  
Johannes Carl ◽  
Klaus Pfeifer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pulmonary Rehabilitation ◽  
Smoking Status ◽  
Symptom Burden ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Target Disease ◽  
Disease Specific

Disease-specific fears predict health status in chronic obstructive pulmonary disease (COPD), but their role in pulmonary rehabilitation (PR) remains poorly understood and especially longer-term evaluations are lacking. We therefore investigated changes in disease-specific fears over the course of PR and six months after PR, and investigated associations with PR outcomes (COPD assessment test (CAT) and St. Georges respiratory questionnaire (SGRQ)) in a subset of patients with COPD (n = 146) undergoing a 3-week inpatient PR program as part of the STAR study (Clinicaltrials.gov, ID: NCT02966561). Disease-specific fears as measured with the COPD anxiety questionnaire improved after PR. For fear of dyspnea, fear of physical activity and fear of disease progression, improvements remained significant at six-month follow-up. Patients with higher disease-specific fears at baseline showed elevated symptom burden (CAT and SGRQ Symptom scores), which persisted after PR and at follow-up. Elevated disease-specific fears also resulted in reduced improvements in Quality of Life (SGRQ activity and impact scales) after PR and at follow-up. Finally, improvement in disease-specific fears was associated with improvement in symptom burden and quality of life. Adjustment for potential confounding variables (sex, smoking status, age, lung function, and depressive symptoms) resulted in comparable effects. These findings show the role of disease-specific fears in patients with COPD during PR and highlight the need to target disease-specific fears to further improve the effects of PR.

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