Health-related quality of life assessment for patients with advanced or metastatic renal cell carcinoma treated with a tyrosine kinase inhibitor using electronic patient-reported outcomes in daily clinical practice (QUANARIE trial): study protocol

Mouillet, Guillaume; Fritzsch, J.; Paget‐Bailly, Sophie; Pozet, Astrid; Es-saad, I; Meurisse, Aurélia; Vernerey, Déwi; Mouyabi, Kristina; Berthod, Diane; Bonnetain, Franck; Anota, Amélie; Thiery-Vuillemin, A.

doi:10.1186/s12955-019-1085-1

Cited by 13 publications

(6 citation statements)

References 47 publications

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“…Moreover, to date, with the development of patient-reported outcome measures, we can contemplate collecting HRQOL information such as QLQ-C30 in daily clinical practice in the same way as in randomised clinical trials [41]. Some clinical trials have been conducted in France in the Franche-Comté region to assess the feasibility of collecting data in daily practice (data under analysis) [42]. This will allow having healthstate utility values obtained from QLQ-C30 for a specific population from which the CUA can be done.…”

Section: Quite a Bitmentioning

confidence: 99%

French Value-Set of the QLU-C10D, a Cancer-Specific Utility Measure Derived from the QLQ-C30

Nerich

Gamper

Norman

et al. 2020

Appl Health Econ Health Policy

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Background and objectiveThe EORTC Quality of Life Utility Measure-Core 10 Dimensions (QLU-C10D) is a new multiattribute utility instrument derived from the EORTC Quality of Life Questionnaire-Core 30 (QLQ-C30), a widely used cancer-specific quality-of-life questionnaire. It covers ten dimensions: physical, role functioning, social, emotional functioning, pain, fatigue, sleep, appetite, nausea and bowel problems. To allow national health preferences to be reflected, country-specific valuations are being performed through collaboration between the Multi-Attribute Utility Cancer (MAUCa) Consortium and the EORTC. The aim of this study was to determine the utility weights for health states in the French version of the QLU-C10D. Methods Valuations were run in a web-based setting in a general population sample of 1033 adults. Utilities were elicited using a discrete-choice experiment (DCE). Data were analyzed by conditional logistic regression and mixed logits. ResultsThe sample was representative of the general French population in terms of gender and age. Dimensions with the largest impact on utility weights were, in this order: physical functioning, pain and emotional functioning. The impact on utilities was lower for role functioning, nausea, bowel problems and social functioning. The dimensions of sleep, fatigue and lacking appetite were associated with the smallest utility decrement. ConclusionThe results of the present study provide utility weights for the QLU-C10D and offer interesting prospects, as some cancer-specific dimensions also received sizeable utility weights (nausea and bowel problems). In fact, the EQ-5D and the HUI 3 are recommended in France and commonly used for cancer-related CUA; however, both these instruments are generic. The availability of a new cancer-specific utility instrument, such as the QLU-C10D, could improve the quality and the pertinence of future CUA in oncology Key Points for Decision MakersThe EORTC QLU-C10D is a new cancer-specific multiattribute utility instrument derived from the EORTC QLQ-C30, a widely used quality-of-life questionnaire in oncology.

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Section: Quite a Bitmentioning

confidence: 99%

French Value-Set of the QLU-C10D, a Cancer-Specific Utility Measure Derived from the QLQ-C30

Nerich

Gamper

Norman

et al. 2020

Appl Health Econ Health Policy

View full text Add to dashboard Cite

show abstract

“…In addition, getting the patient to complete an HRQoL questionnaire before each consultation may be useful for the physician to assess any evolution of HRQoL and to identify any specific issues to be discussed. Different feasibility studies are underway to systematically collect ICI-related symptom and HRQoL data [ 39 , 40 ] and should provide interesting complementary information. A recent study on social media suggested that existing standard HRQoL questionnaires should be enriched with new items that are more relevant for patients treated with ICIs in their daily experience with disease and treatment [ 29 ].…”

Section: Discussionmentioning

confidence: 99%

Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations

Wilczynski¹,

Boisbouvier²,

Radoszycki³

et al. 2022

J Med Internet Res

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Background New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. Objective This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. Methods This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. Results Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient’s initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss. Conclusions With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed.

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“… 14 , 26 , 27 , 28 Several studies have focused on the feasibility and the interest of HRQoL questionnaires in routine practice, including the use of electronic monitoring-based or web-based approaches, but few studies have investigated the patient and clinician expectations regarding HRQoL management in France. 29 , 30 , 31 In addition, recent findings indicate that current standardised PRO questionnaires may have limitations in capturing all the patient relevant domains of HRQoL for patients treated with immunotherapies. 32 Notwithstanding the absence of a consensus on the ideal instruments for HRQoL assessment, both interview guides and questionnaires prove useful depending on which time point of the patient care pathway they are implemented and patient/physician preferences.…”

Section: Discussionmentioning

confidence: 99%

Management of lung cancer patients' quality of life in clinical practice: a Delphi study

et al. 2021

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Background The assessment of health-related quality of life (HRQoL) has seen exponential growth in oncology clinical trials. However, the measurement of HRQoL has yet to be optimised in routine clinical practice. This study aimed at exploring the operationalisation of HRQoL in clinical practice with the goal of reaching a consensus from a panel of physicians. Materials and methods Physicians involved in the management of lung cancer patients in France were recruited to participate in a Delphi study. The study involved three rounds of iterated queries to gain consensus on management aspects of HRQoL, including timing of discussion on HRQoL, which specific domains of HRQoL should be discussed, and what was the most appropriate method of assessment. The threshold adopted for consensus was at least 70% agreement among physicians. A scientific committee reviewed results following each round of the Delphi study. Results A representative panel of 60 physicians participated in this study. Consensus was obtained for HRQoL management at all time points in the patient care pathway. Panellists agreed that HRQoL discussions should occur during routine visits and hospitalisation. The involvement of patients' relatives was also recognised as important, except when discussing side-effects and involvement of a multidisciplinary team. There was a lack of consensus on a systematic assessment for all patients at each visit and no consensus on how HRQoL should be measured in clinical practice. Conclusions HRQoL discussions are considered an integral part in the management of lung cancer patients, and are deemed key to success in patient–physician interaction. Further research is required to harmonise how best to implement HRQoL assessment.

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Health-related quality of life assessment for patients with advanced or metastatic renal cell carcinoma treated with a tyrosine kinase inhibitor using electronic patient-reported outcomes in daily clinical practice (QUANARIE trial): study protocol

Cited by 13 publications

References 47 publications

French Value-Set of the QLU-C10D, a Cancer-Specific Utility Measure Derived from the QLQ-C30

French Value-Set of the QLU-C10D, a Cancer-Specific Utility Measure Derived from the QLQ-C30

Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations

Management of lung cancer patients' quality of life in clinical practice: a Delphi study

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