The Added Value of Analyzing Pooled Health-Related Quality of Life Data: A Review of the EORTC PROBE Initiative

Zikos, Efstathios; Coens, Corneel; Quinten, Chantal; Ediebah, Divine E.; Martinelli, Francesca; Ghislain, Irina; King, Madeleine; Gotay, Carolyn; Ringash, Jolie; Velikova, Galina; Reeve, Bryce B.; Greimel, Eva; Cleeland, Charles S.; Flechtner, Henning; Taphoorn, Martin J.B.; Weis, Joachim; Koch, J. Schmucker-Von; Sprangers, Mirjam A. G.; Bottomley, Andrew

doi:10.1093/jnci/djv391

Cited by 33 publications

(26 citation statements)

References 35 publications

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“…Unidimensional instruments or subscales measure the severity of perceived fatigue and tend to be short and easy-to-use. Also, they have the most robust psychometric data to support their use since they are widely used: the FACT and the EORTC QLQ-C30 have been used in over 10.000 patients [39, 40]. However, fatigue is a multidimensional concept involving mood disorders, anxiety, cognitive disorders and physical distress [5].…”

Section: Discussionmentioning

confidence: 99%

Fatigue in patients with low grade glioma: systematic evaluation of assessment and prevalence

et al. 2017

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Fatigue is the most prevalent and disabling symptom in cancer patients. Yet, scientific literature on this topic is scarce and reports disparate results. This study systematically reviews how fatigue is assessed in patients with low-grade glioma and evaluates its prevalence in LGG patients. A systematic literature search was performed in PubMed, Embase and PsychINFO for articles reporting on fatigue in patients with LGG. Two reviewers independently extracted data from selected articles. Inclusion criteria were: (1) patients with suspected or confirmed LGG; (2) fatigue was assessed as primary or secondary outcome measure; (3) age≥ 18 years; (4) full-length article written in English or Dutch. In total, 19 articles were selected, including 971 patients. Seven self-assessment instruments were identified. Prevalence rates ranged from 39 to 77%. Fatigue was found to be a common side effect of treatment. The prevalence rates ranged from 20 to 76% when fatigue was reported as a mild or moderate side effect and fatigue was prevalent in 4% when reported as a severe side effect. Fatigue is a common problem in LGG patients that warrants more therapeutic and scientific attention. Gaining deeper insight in the underlying mechanisms of fatigue is essential in targeting therapy to individual patients.

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Section: Discussionmentioning

confidence: 99%

Fatigue in patients with low grade glioma: systematic evaluation of assessment and prevalence

et al. 2017

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“…Building on the WHO model of health, HRQOL can be defined as a multidimensional concept that refers to an individual's usual or expected physical, emotional, and social well-being. Notably, such PROMs that assess this range of concepts are increasingly becoming emphasized in clinical trials and other areas of medicine (Atherton & Sloan, 2006;Leidy, Beusterien, Sullivan, Richner, & Muni, 2006;Zikos et al, 2016). Although organized as discrete domains, physical, emotional, and social well-being are likely interrelated.…”

Section: Health-related Quality-of-life Measures As Promsmentioning

confidence: 99%

In pursuit of empirically supported assessment for use in medical settings.

Butt¹

2016

Clinical Psychology: Science and Practice

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Psychological assessment in the medical setting presents many opportunities and challenges. On the question of what constitutes empirically supported assessment practice, there are few clear answers and perhaps fewer exemplars. The goal of this article was not to review the current status of empirically supported assessment in medical settings, but rather to highlight some areas of measurement innovation that may move this field toward its promise of a more stable evidence base supporting the use of patient-reported outcome measures for clinical research, patient education, and clinical care. In addition, assessment in the medical setting provides one very unique opportunity that many psychologists are not honed in on: the use of psychological assessment to assess quality health care. This is an emerging reality that poses significant methodological puzzles and opens doors for those committed to psychological assessment.

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“…Before further mandates around PROMs collection are established, a gap in the evidence base for routine collection of PROMs or PREMs in CKD clinical care, and/or for quality assurance needs to be addressed. Prior systematic reviews in other disease areas have shown mixed results with respect to improvement in patient outcomes or processes of care that can be achieved through regular measurement . The exception appears to be with the assessment of symptoms and subsequent targeted action to address them .…”

Section: Discussionmentioning

confidence: 99%

“…Prior systematic reviews in other disease areas have shown mixed results with respect to improvement in patient outcomes or processes of care that can be achieved through regular measurement. 27,28 The exception appears to be with the assessment of symptoms and subsequent targeted action to address them. 29 New evidence from oncology suggests that quality of life and survival benefits may be realized by addressing symptoms in a systematic way.…”

Section: Discussionmentioning

confidence: 99%

Use of patient‐reported outcome measures and patient‐reported experience measures in renal units in Australia and New Zealand: A cross‐sectional survey study

et al. 2019

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Aim Patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs) are increasingly used in research to quantify how patients feel and function, and their experiences of care, however, knowledge of their utilization in routine nephrology is limited. Methods The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) PROMs working group conducted a prospective cross‐sectional survey of PROMs/PREMs use among renal ‘parent hospitals’. One survey per hospital was completed (August–November 2017). Descriptive statistics reported type and frequency of measures used and purpose of use. Results Survey response rate was 100%. Fifty‐five of 79 hospitals (70%) used at least one PROMs or PREMs for specific patient groups. PROMs were more likely to be collected from patients receiving comprehensive conservative care (45% of hospitals) than dialysis patients (32%, 31% and 28% of hospitals for home haemodialysis, peritoneal dialysis and facility dialysis, respectively). Few renal transplanting hospitals (3%) collected PROMs. The Integrated Palliative Outcome Scale‐Renal (IPOS‐Renal) (40% of units), and the Euro‐Qol (EQ‐5D‐5 L) (25%), were most frequently used. The main reason for collecting PROMs was to inform clinical care (58%), and for PREMs was to fulfil private dialysis/hospital provider requirements (25%). The most commonly reported reason for not using PROMs in 24 hospitals was insufficient staff resources (79%). Sixty‐two hospitals (78%) expressed interest in participating in a registry‐based PROMs trial. Conclusion Many renal hospitals in Australia and New Zealand collect PROMs and/or PREMs as part of clinical care with use varying by treatment modality. Resources are a key barrier to PROMs use.

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The Added Value of Analyzing Pooled Health-Related Quality of Life Data: A Review of the EORTC PROBE Initiative

Cited by 33 publications

References 35 publications

Fatigue in patients with low grade glioma: systematic evaluation of assessment and prevalence

Fatigue in patients with low grade glioma: systematic evaluation of assessment and prevalence

In pursuit of empirically supported assessment for use in medical settings.

Use of patient‐reported outcome measures and patient‐reported experience measures in renal units in Australia and New Zealand: A cross‐sectional survey study

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