scholarly journals Has the quality of health-related quality of life reporting in cancer clinical trials improved over time? Towards bridging the gap with clinical decision making

2007 ◽  
Vol 18 (4) ◽  
pp. 775-781 ◽  
Author(s):  
F. Efficace ◽  
D. Osoba ◽  
C. Gotay ◽  
M. Sprangers ◽  
C. Coens ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Cancer Clinical Trials ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time

Beyond the Development of Health-Related Quality-of-Life (HRQOL) Measures: A Checklist for Evaluating HRQOL Outcomes in Cancer Clinical Trials—Does HRQOL Evaluation in Prostate Cancer Research Inform Clinical Decision Making?

2003 ◽  
Vol 21 (18) ◽  
pp. 3502-3511 ◽  
Author(s):  
Fabio Efficace ◽  
Andrew Bottomley ◽  
David Osoba ◽  
Carolyn Gotay ◽  
Henning Flechtner ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
Clinical Trials ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Cancer Clinical Trials ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Purpose: The aim of this study was to evaluate whether the inclusion of health-related quality of life (HRQOL), as a part of the trial design in a randomized controlled trial (RCT) setting, has supported clinical decision making for the planning of future medical treatments in prostate cancer. Materials and Methods: A minimum standard checklist for evaluating HRQOL outcomes in cancer clinical trials was devised to assess the quality of the HRQOL reporting and to classify the studies on the grounds of their robustness. It comprises 11 key HRQOL issues grouped into four broader sections: conceptual, measurement, methodology, and interpretation. Relevant studies were identified in a number of databases, including MEDLINE and the Cochrane Controlled Trials Register. Both their HRQOL and traditional clinical reported outcomes were systematically analyzed to evaluate their consistency and their relevance for supporting clinical decision making. Results: Although 54% of the identified studies did not show any differences in traditional clinical end points between treatment arms and 17% showed a difference in overall survival, 74% of the studies showed some difference in terms of HRQOL outcomes. One third of the RCTs provided a comprehensive picture of the whole treatment including HRQOL outcomes to support their conclusions. Conclusion: A minimum set of criteria for assessing the reported outcomes in cancer clinical trials is necessary to make informed decisions in clinical practice. Using a checklist developed for this study, it was found that HRQOL is a valuable source of information in RCTs of treatment in metastatic prostate cancer.

scholarly journals Routine administration of Health Related Quality of Life (HRQoL) and needs assessment instruments to improve psychological outcome – a systematic review

2002 ◽  
Vol 32 (8) ◽  
pp. 1345-1356 ◽  
Author(s):  
S. M. GILBODY ◽  
A. O. HOUSE ◽  
T. SHELDON
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Assessment Instruments ◽  
Health Related Quality ◽  
Routine Administration ◽  
Related Quality ◽  
Health Related

Background. Routine administration of Health Related Quality of Life (HRQoL) and needs assessment instruments has been advocated as part of clinical care to aid the recognition of psychosocial problems, to inform clinical decision making, to monitor therapeutic response and to facilitate patient–doctor communication. However, their adoption is not without cost and the benefit of their use is unclear.Method. A systematic review was conducted. We sought experimental studies that examined the addition of routinely administered measures of HRQoL to care in both psychiatric and non-psychiatric settings. We searched the following databases: MEDLINE, EMBASE, CINAHL, PsycLIT and Cochrane Controlled Trials Register (to 2000). Data were extracted independently and a narrative synthesis of results was presented.Results. Nine randomized and quasi-randomized studies conducted in non-psychiatric settings were found. All the instruments used included an assessment of mental well-being, with specific questions relating to depression and anxiety. The routine feedback of these instruments had little impact on the recognition of mental disorders or on longer term psychosocial functioning. While clinicians welcomed the information these instruments imparted, their results were rarely incorporated into routine clinical decision making. No studies were found that examined the value of routine assessment and feedback of HRQoL or patient needs in specialist psychiatric care settings.Conclusions. Routine HRQoL measurement is a costly exercise and there is no robust evidence to suggest that it is of benefit in improving psychosocial outcomes of patients managed in non-psychiatric settings. Major policy initiatives to increase the routine collection and use of outcome measures in psychiatric settings are unevaluated.

scholarly journals Health-related quality of life of partners of adults with haemophilia

2015 ◽  
Vol 2 (1) ◽  
pp. 20-26
Author(s):  
Sylvia von Mackensen ◽  
Karin Lindvall ◽  
Sölve Elmståhl ◽  
Erik Berntorp
Keyword(s):  
Quality Of Life ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Burden Scale ◽  
Health Related ◽  
The Impact

Abstract Assessment of health-related quality of life (HRQoL) in haemophilia is important in order to provide information for clinical decision-making and to verify the impact of haemophilia on patients and their partners. A crosssectional single-centre study was performed to assess the health-related quality of life (HRQoL) and burden of the disease on partners of adult patients with haemophilia. Self-reported outcomes were completed by partners and patients (SF-36, VAS of Interference); partners also completed the Caregivers’ Burden Scale. A total of 108 of 150 eligible partners of adults with haemophilia (72%) participated. Mean age for partners was 44.7 years (range 20-79) and for patients 47.1 years (range 20-81). The majority of couples were married (65.7%). Couples reported being together a mean of 19.8 years and had, on average, 1.7 children. Partners of haemophilia patients across all severities reported lower HRQoL in the ‘emotional role’ domain of SF-36 (P=<0.041), with highest impairments observed among partners of moderately affected patients. Partners reported significantly less interference with daily life compared to patients (P<0.001). In general, partners reported low burden of haemophilia in the Caregivers’ Burden Scale; ‘emotional involvement’ was the greatest burden in the mild and moderate group; while in the severe group ‘general strain’ was the greatest burden. Partners of severe haemophilia patients on prophylaxis reported, in general, good HRQoL and low burden of the disease. Partners of moderate patients reported decreased HRQoL and higher burden. Our findings may be of importance for the care of the ageing person with haemophilia (PWH).

scholarly journals P139 What impact does JIA have on health-related quality of life over time and by gender?

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Andrew Smith ◽  
Bishma Saqib ◽  
Rebecca Lee ◽  
Wendy Thomson ◽  
Lis Cordingley
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Child Health ◽  
Reference Population ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time ◽  
Domain Scores

Abstract Background Juvenile idiopathic arthritis (JIA) is a heterogeneous group of arthritic conditions presenting in children and young people, in which physical limitations and associated complications can have detrimental effects on physical and psychosocial wellbeing. This study aims to investigate the impact of living with JIA on different aspects of health-related quality of life (HRQoL) and to explore how this changes over time, using data from the Childhood Arthritis Prospective Study (CAPS). Methods Longitudinal data collected as part of CAPS were analysed. HRQoL was assessed at baseline, 1 year and 3 years’ post-diagnosis using the Child Health Questionnaire (CHQ), a parent-completed form for children from 5 years of age. The CHQ measures physical, emotional and social components of child health status. Raw domain scores were transformed via algorithm into values ranging from 0-100, with higher scores indicating better health status. Mean (standard deviation) and median (interquartile range) for each domain were determined, both for the full cohort and by gender. Differences between median scores at baseline and 3 years were assessed using the Wilcoxon signed-rank test. Mean scores of each domain were visually compared with a reference population sample of healthy children from the United States. Results 184 participants completed the questionnaire at all 3 time points. At baseline, compared to the reference population, children with JIA scored lower in every domain although scores were closer between the 2 groups at 3 years. Median scores improved over time, the exception being the general health perceptions domain which decreased after baseline. Domains with the greatest improvement were physical functioning,“bodily pain and social-physical. The largest changes occurred from baseline to 1 year. Statistically significant differences between baseline and 3-year scores were found for all domains. Domain scores for male and female participants were very similar at baseline, though scores for male participants indicated slightly better health at 1 and 3 years for both physical and psychosocial domains. Conclusion JIA has significant impact on HRQoL, which improves within 3 years of diagnosis with the greatest improvement occurring within the first year. Physical health domains show greater improvement over time than psychosocial domains, although psychosocial scores were generally higher throughout the study. Male participants tend to score slightly higher than female participants in both physical and psychosocial domains after baseline. Further research should explore measurable patient, age or disease-related drivers of HRQoL. Disclosures A. Smith None. B. Saqib None. R. Lee None. W. Thomson None. L. Cordingley None.

scholarly journals Impact of malnutrition on health-related quality of life in persons receiving dialysis: a prospective study

2021 ◽  
pp. 1-24
Author(s):  
Daniela Viramontes-Hörner ◽  
Zoe Pittman ◽  
Nicholas M Selby ◽  
Maarten W Taal
Keyword(s):  
Quality Of Life ◽  
Prospective Study ◽  
Health Related Quality ◽  
Poor Hrqol ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Over Time

Abstract Health-related quality of life (HRQoL) is severely impaired in persons receiving dialysis. Malnutrition has been associated with some measures of poor HRQoL in cross-sectional analyses in dialysis populations, but no studies have assessed the impact of malnutrition and dietary intake on change in multiple measures of HRQoL over time. We investigated the most important determinants of poor HRQoL and the predictors of change in HRQoL over time using several measures of HRQoL. We enrolled 119 haemodialysis and 31 peritoneal dialysis patients in this prospective study. Nutritional assessments (Subjective Global Assessment [SGA], anthropometry and 24-hour dietary recalls) and HRQoL questionnaires (Short Form-36 [SF-36] mental [MCS] and physical component scores [PCS] and European QoL-5 Dimensions [EQ5D] health state [HSS] and visual analogue scores [VAS]) were performed at baseline, 6 and 12 months. Mean age was 64(14) years. Malnutrition was present in 37% of the population. At baseline, malnutrition assessed by SGA was the only factor independently (and negatively) associated with all four measures of HRQoL. No single factor was independently associated with decrease in all measures of HRQoL over 1 year. However, prevalence/development of malnutrition over one year was an independent predictor of 1-year decrease in EQ5D HSS and 1-year decrease in fat intake independently predicted the 1-year decline in SF-36 MCS and PCS, and EQ5D VAS. These findings strengthen the importance of monitoring for malnutrition and providing nutritional advice to all persons on dialysis. Future studies are needed to evaluate the impact of nutritional interventions on HRQoL and other long-term outcomes.

scholarly journals Health-related quality of life of early-stage breast cancer patients after different radiotherapy regimens

2021 ◽  
Author(s):  
Daphne H. M. Jacobs ◽  
Ramona K. Charaghvandi ◽  
Nanda Horeweg ◽  
John H. Maduro ◽  
Gabrielle Speijer ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Early Stage ◽  
Early Stage Breast Cancer ◽  
Breast Irradiation ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time

Abstract Purpose To evaluate and compare health-related quality of life (HRQL) of women with early-stage breast cancer (BC) treated with different radiotherapy (RT) regimens. Methods Data were collected from five prospective cohorts of BC patients treated with breast-conserving surgery and different RT regimens: intraoperative RT (IORT, 1 × 23.3 Gy; n = 267), external beam accelerated partial breast irradiation (EB-APBI, 10 × 3.85 Gy; n = 206), hypofractionated whole breast irradiation(hypo-WBI, 16 × 2.67 Gy; n = 375), hypo-WBI + boost(hypo-WBI-B, 21–26 × 2.67 Gy; n = 189), and simultaneous WBI + boost(WBI-B, 28 × 2.3 Gy; n = 475). Women ≥ 60 years with invasive/in situ carcinoma ≤ 30 mm, cN0 and pN0-1a were included. Validated EORTC QLQ-C30/BR23 questionnaires were used to asses HRQL. Multivariable linear regression models adjusted for confounding (age, comorbidity, pT, locoregional treatment, systemic therapy) were used to compare the impact of the RT regimens on HRQL at 12 and 24 months. Differences in HRQL over time (3–24 months) were evaluated using linear mixed models. Results There were no significant differences in HRQL at 12 months between groups except for breast symptoms which were better after IORT and EB-APBI compared to hypo-WBI at 12 months (p < 0.001). Over time, breast symptoms, fatigue, global health status and role functioning were significantly better after IORT and EB-APBI than hypo-WBI. At 24 months, HRQL was comparable in all groups. Conclusion In women with early-stage breast cancer, the radiotherapy regimen did not substantially influence long-term HRQL with the exception of breast symptoms. Breast symptoms are more common after WBI than after IORT or EB-APBI and improve slowly until no significant difference remains at 2 years posttreatment.

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