Role of Health-Related Quality of Life in Palliative Chemotherapy Treatment Decisions

2002 ◽  
Vol 20 (4) ◽  
pp. 1056-1062 ◽  
Author(s):  
S. B. Detmar ◽  
M. J. Muller ◽  
J. H. Schornagel ◽  
L. D.V. Wever ◽  
N. K. Aaronson
Keyword(s):  
Quality Of Life ◽  
Tumor Progression ◽  
Palliative Chemotherapy ◽  
Treatment Decisions ◽  
Self Report ◽  
Health Related Quality ◽  
Discontinuation Of Treatment ◽  
Related Quality ◽  
Health Related

PURPOSE: To determine the frequency with which health-related quality-of-life (HRQL) considerations lead to modification or discontinuation of palliative chemotherapy, and the association between physicians’ ratings of patients’ HRQL and such treatment decisions. METHODS: Four consecutive medical consultations of 203 patients receiving outpatient palliative chemotherapy were tape-recorded and the content was analyzed to determine the frequency of and reasons for treatment alterations. Physicians rated their patients’ HRQL by using the COOP/WONCA health assessment charts. Data on tumor response and treatment toxicity were obtained from the audiotapes and, when necessary, were confirmed by medical chart audits. RESULTS: Treatment was modified in 54 cases (26%) and discontinued in 40 (20%). The primary reasons for modifying treatment were toxicity (n = 22), HRQL considerations (n = 18), and tumor progression (n = 14). The primary reasons for discontinuation of treatment were tumor progression (n = 23), HRQL considerations (n = 6), and toxicity (n = 3). For eight patients, a combination of tumor progression and HRQL issues resulted in discontinuation of treatment. Treatment decisions were associated significantly with physicians’ global ratings of patients’ HRQL but not with more specific HRQL domains. In the presence of tumor progression or serious toxicity, HRQL considerations played little or no role in treatment decisions. Furthermore, approximately 70% of patients without evidence of tumor progression or toxicity, but with seriously impaired HRQL, continued to receive their treatment as planned. CONCLUSION: Contrary to previous findings based on physicians’ self-report data, HRQL considerations seem to play a relatively minor role in decisions regarding modification or discontinuation of palliative chemotherapy.

Health-Related Quality of Life for Long-Acting Octreotide versus Placebo in Patients with Metastatic Midgut Neuroendocrine Tumors in the Phase 3 PROMID Trial

2019 ◽  
Vol 109 (2) ◽  
pp. 141-151 ◽  
Author(s):  
Anja Rinke ◽  
Maureen P. Neary ◽  
Jennifer Eriksson ◽  
Matthias Hunger ◽  
Thinh Doan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Tumor Progression ◽  
Neuroendocrine Tumors ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Long Acting ◽  
Eortc Qlq

Background: In the phase IIIb PROMID study, octreotide long-acting significantly extended time to tumor progression compared with placebo in treatment-naïve patients with well-differentiated metastatic midgut neuroendocrine tumors. We report post hoc analyses for health-related quality of life (HRQoL). Methods: HRQoL was measured with EORTC QLQ-C30, a 30-item self-report questionnaire (5 functional, 1 global, 9 symptom scales). Assessments were completed at baseline and every 12 weeks until tumor progression. Time to definitive deterioration (TDD; worsening of ≥10 points without further improvement) was analyzed with the Kaplan-Meier method. Linear mixed models were fit to assess change from baseline in QLQ-C30 scores by treatment arm over time. Results: Among 85 patients, 82 (96%) completed the QLQ-C30 at baseline. There were few events of definitive deterioration for many scales. Significantly longer TDD was reported for long-acting octreotide versus placebo for fatigue (median 18.5 months vs. 6.8; p = 0.0006), pain (not reached [NR] vs. 18.2; p = 0.0435) and insomnia (NR vs. 16.4; p = 0.0046). Change from baseline to week 24 fatigue scores were stable for long-acting octreotide (mean 0.78; 95% CI –6.3 to 7.8) but worsened for placebo (mean 9.1; 95% CI 1.9–16.4), and for diarrhea there were improvements for long-acting octreotide (mean –8.0; 95% CI –19.6 to 3.5) and worsening for placebo (mean 11.2; 95% CI –0.7 to 23.1). Conclusions: HRQoL was maintained with few deteriorations in long-acting octreotide patients, whereas there was earlier and/or more deterioration in placebo patients. In long-acting octreotide patients, HRQoL was maintained or improved for the clinically important neuroendocrine tumor symptoms such as fatigue, insomnia, diarrhea and pain, whereas placebo patients experienced a deterioration of HRQoL scores for these symptoms.

The Vietnamese Version of the Health-related Quality of Life Measure for Children with Epilepsy (CHEQOL-25): Reliability

MedPharmRes ◽  
2017 ◽  
Vol 1 (1) ◽  
pp. 9-14
Author(s):  
Tri Doan ◽  
Tuan Tran ◽  
Han Nguyen ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Good Practice ◽  
The Self ◽  
Self Report ◽  
Health Related Quality ◽  
Life Measure ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability. Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally adapted into Vietnamese by using the Principles of Good Practice for the Translation and Cultural Adaptation Process. The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was determined by using Cronbach’s coefficient α and intra-class correlation coefficient (ICC). Results: Both Vietnamese versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to understand for Vietnamese children and parents. Thus, no further modification was required. Cronbach’s α coefficient for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and 0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and parent-proxy CHEQOL-25 were the first questionnaires about quality of life of epileptic children in Vietnam. This Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.

scholarly journals A history of health-related quality of life outcomes in psychiatry

2014 ◽  
Vol 16 (2) ◽  
pp. 127-135 ◽  
Keyword(s):  
Quality Of Life ◽  
Psychiatric Patients ◽  
Clinical Care ◽  
Self Report ◽  
Psychiatric Research ◽  
Health Related Quality ◽  
Patient Centered ◽  
Related Quality ◽  
Health Related

Health-related quality of life (HRQoL) is a multidimensional concept that includes subjective reports of symptoms, side effects, functioning in multiple life domains, and general perceptions of life satisfaction and quality. Rather than estimating it from external observations, interview, or clinical assessment, it is best measured by direct query. Due to a perception that respondents may not be reliable or credible, there has been some reluctance to use self-report outcomes in psychiatry. More recently, and increasingly, HRQoL assessment through direct patient query has become common when evaluating a range of psychiatric, psychological, and social therapies. With few exceptions, psychiatric patients are credible and reliable reporters of this information. This article summarizes studies that highlight the development, validation, and application of HRQoL measures in psychiatry. Thoughtful application of these tools in psychiatric research can provide a much-needed patient perspective in the future of comparative effectiveness research, patient-centered outcomes research, and clinical care.

scholarly journals Impact of long-COVID on health-related quality of life in Japanese COVID-19 patients

2021 ◽  
Author(s):  
Shinya Tsuzuki ◽  
Yusuke Miyazato ◽  
Mari Terada ◽  
Shinichiro Morioka ◽  
Norio Ohmagari ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Burden ◽  
Self Report ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Long Duration ◽  
Related Quality ◽  
Health Related ◽  
Basic Characteristics

AbstractBackgroundThe empirical basis for a quantitative assessment of the disease burden imposed by long-COVID is currently scant. We aimed to assess the disease burden caused by long-COVID in Japan.MethodsWe conducted a cross sectional self-report questionnaire survey. The questionnaire was mailed to 530 eligible patients, who were recovered from acute COVID-19 in April 2021. Answers were classified into two groups; participants who have no symptom and those who have any ongoing symptoms that lasted longer than four weeks at the time of the survey. We compared health-related quality of life scores estimated by the EQ-5D-3L questionnaire between these two groups after adjusting basic characteristics of the participants by propensity score matching.Results349 participants reported no symptoms and 108 reported any symptoms at the time of the survey. The participants who reported any symptoms showed a lower value on a Visual Analogue Scale (median 70 [IQR 60-80]) and on the EQ-5D-3L (median 0.81 [IQR 0.77-1.0]) than those reporting no symptoms (median 85 [IQR 75-90] and 1.0 [IQR 1.0-1.0], respectively). After adjusting for background characteristics, these trends did not change substantially (Visual Analog Scale: median 70 [IQR 60-80] vs 80 [IQR 77-90], EQ-5D-3L: median 0.81 [IQR 0.76-1.0] vs 1.0 [IQR 1.0-1.0]).ConclusionsDue to their long duration, long-COVID symptoms represent a substantial disease burden expressed in impact on health-related quality of life.Trial registrationNot applicable.

scholarly journals Impact of patient’s health-related quality of life on physicians’ therapy and perceived benefit in acute coronary syndromes: protocol for a systemic review of quantitative and qualitative studies

BMJ Open ◽  
2019 ◽  
Vol 9 (2) ◽  
pp. e026595 ◽  
Author(s):  
Billingsley Kaambwa ◽  
Hailay Gesesew ◽  
Matthew Horsfall ◽  
Derek P Chew
Keyword(s):  
Quality Of Life ◽  
Treatment Decisions ◽  
Qualitative Studies ◽  
Systemic Review ◽  
Health Related Quality ◽  
Coronary Syndrome ◽  
Related Quality ◽  
Health Related ◽  
The Impact

IntroductionPercutaneous coronary interventions (PCIs) and coronary angiography are two of the treatments administered to acute coronary syndrome (ACS) patients. However, whether and how patients’ health-related quality of life (HRQoL) influences treatment decisions and subsequent risk benefit analyses is unclear. In this study, we will review the available evidence on the impact of patients’ HRQoL on physicians’ prescribing or treatment decisions and on the estimation of mortality and bleeding risk in ACS patients.Methods and analysisWe will undertake a systematic review of all quantitative and qualitative studies. The search will include studies that describe the impact of HRQoL on prescribing PCIs or angiography, and impact of HRQoL on perceived risks in terms of mortality and bleeding events. We will conduct an initial search on Google scholar and MEDLINE to build the searching terms followed by a full search strategy using all identified keywords and index terms across the five databases, namely MEDLINE, PubMed, CINAHL, SCOPUS and Web of Sciences. We will use the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for protocol guidelines to present the protocol. Only English language articles will be included for the review. We will use a standardised Joanna Briggs Institute data extraction tool to synthesise the information extracted from the selected studies into themes with summary findings presented in a table.Ethics and disseminationWe will not require a formal ethical approval as we will not be collecting primary data. Review findings will be disseminated through a peer-reviewed publication, workshops, conference presentations and a media release.PROSPERO registration numberCRD42018108438.

scholarly journals P.072 Agreement between children and their parents’ ratings of the health-related quality of life of children with Duchenne Muscular Dystrophy

2018 ◽  
Vol 45 (s2) ◽  
pp. S35-S35
Author(s):  
S Brar ◽  
C Campbell ◽  
E McColl ◽  
W Martens ◽  
M McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy ◽  
Level Of Agreement

Background: When measuring young Duchenne Muscular Dystrophy (DMD) patients’ health-related quality of life (HRQoL), parent-proxy reports are heavily relied on. Therefore, it is imperative that the relationship between parent-proxy and child self-report HRQoL is understood. This study examined the level of agreement between children and their parent-proxy rating of the child’s HRQoL. Methods: We used FOR-DMD clinical trial baseline data. HRQoL, measured using the PedsQL inventory, was reported by 178 parent and child (ages 4 to 7 years) dyads. Intracorrelation coefficients (ICC) measured absolute agreement while paired t-tests determined differences in the average HRQoL ratings between groups. Results: The level of agreement between child and parent-proxy ratings of HRQoL was poor for the generic PedsQL scale (ICC: 0.29) and its subscales; and, similarly low for the neuromuscular disease module (ICC:0.16). On average, parents rated their child’s HRQoL as poorer than the children rated themselves in all scales except for psychosocial and school functioning. Conclusions: Child and parent-proxy HRQoL ratings are discordant in this study sample, as occurs in other chronic pediatric diseases. This should be taken into account when interpreting clinical and research HRQoL findings in this population. Future studies should examine reasons for parents’ perception of poorer HRQoL than that reported by their children.

Health-related Quality of Life of Older Women Religious: Negative Influence of Frailty

2020 ◽  
Vol 42 (12) ◽  
pp. 1088-1096
Author(s):  
Amy B. Petrinec ◽  
Mary Lind Crowe ◽  
Sr. Kathleen Flanagan ◽  
Janet Baker
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Older Women ◽  
Women Religious ◽  
Blood Pressure Measurement ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

The purpose of the current study was to describe the health-related quality of life (HRQOL) of older women religious (WR) and examine variables that may influence HRQOL. The sample consisted of WR, 65 years or older, living in the Cleveland Catholic Diocese. The participants completed a medical history, body-mass index (BMI) and blood pressure measurement, and self-report measures of HRQOL, frailty, social support, resilience, and depression. The study sample was composed of 108 older WR with a mean age of 75.6 (range 65–93 years). The women reported high levels of daily functioning, resilience, and social support, with low levels of depression. WR describe a relatively high level of HRQOL. Frailty was an independent negative predictor of HRQOL in all subscales except general health. Resilience and fear of falling had significant effects on several HRQOL subscales.

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