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Cancer Patients Europe joins Qualitop

A significant stride towards enhancing the quality of life for cancer patients, Cancer Patients Europe (CPE) has joined the consortium to lend support to the mission of Qualitop and amplify its key messages across a wider audience. 
 
“Cancer Patients Europe is thrilled to join forces with Qualitop in our shared mission to improve the lives of cancer patients through innovative solutions. By integrating into the consortium, we aim to leverage our collective expertise and resources to drive meaningful change and advance the well-being of cancer patients across Europe,” said Antonella Cardone, CEO of Cancer Patients Europe.

Cancer Patients Europe (CPE) stands as a pan-European patient-centric association, spanning multiple countries within Europe, dedicated to advocating for the rights and needs of cancer patients and survivors. With a vision aimed at alleviating the burdens of cancer on patients, their caregivers, healthcare systems, and society at large, CPE brings invaluable expertise and a deep commitment to improving the lives of those affected by cancer. By integrating into the consortium, CPEs will positively impact on Qualitop’s mission to improve the well-being of cancer immunotherapy patients and their quality of life. 

Aligned with Qualitop’s core objective, CPE and Qualitop will collaboratively strive to further advance the project’s goals, leveraging shared values and aspirations to drive meaningful change in cancer care. 

As the project progresses toward its final objectives, the dissemination and the sustainability of the project outcomes emerge as a crucial endeavour. The promotion of this smart digital platform ensures its accessibility to the right audience, thereby facilitating access to critical data that directly contributes to improving their lives. CPE’s engagement in communication activities will play a pivotal role in achieving this goal, amplifying the reach and impact of Qualitop’s efforts. 

Together with CPE, Qualitop is steadfast in its commitment to ensuring the sustainability of the project. Grounded in principles of patient empowerment, improved quality of life, and equitable access to cancer immunotherapy-related data, Qualitop is poised to prioritise the long-term benefits of the project, driving initiatives aimed at fostering sustainability and enduring impact. 

“We wholeheartedly welcome CPE to join us in advancing the well-being of cancer patients through their valuable contributions and shared dedication,” said Delphine Maucort-Boulch, Qualitop Project Coordinator. This collaborative journey recognises the invaluable contributions and shared dedication to advancing the well-being of cancer patients.  

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Publication on: “Monitoring multidimensional aspects of quality of life after cancer immunotherapy: protocol for the international multicentre, observational QUALITOP cohort study”

Abstract

Introduction: 

Immunotherapies, such as immune checkpoint inhibitors and chimeric antigen receptor T-cell therapy, have significantly improved the clinical outcomes of various malignancies. However, they also cause immune-related adverse events (irAEs) that can be challenging to predict, prevent and treat. Although they likely interact with health-related quality of life (HRQoL), most existing evidence on this topic has come from clinical trials with eligibility criteria that may not accurately reflect real-world settings. The QUALITOP project will study HRQoL in relation to irAEs and its determinants in a real-world study of patients treated with immunotherapy.

Methods and analysis: 

This international, observational, multicentre study takes place in France, the Netherlands, Portugal and Spain. We aim to include about 1800 adult patients with cancer treated with immunotherapy in a specifically recruited prospective cohort, and to additionally obtain data from historical real-world databases (ie, databiobanks) and medical administrative registries (ie, national cancer registries) in which relevant data regarding other adult patients with cancer treated with immunotherapy has already been stored. In the prospective cohort, clinical health status, HRQoL and psychosocial well-being will be monitored until 18 months after treatment initiation through questionnaires (at baseline and 3, 6, 12 and 18 months thereafter), and by data extraction from electronic patient files. Using advanced statistical methods, including causal inference methods, artificial intelligence algorithms and simulation modelling, we will use data from the QUALITOP cohort to improve the understanding of the complex relationships among treatment regimens, patient characteristics, irAEs and HRQoL.

Ethics and dissemination: 

All aspects of the QUALITOP project will be conducted in accordance with the Declaration of Helsinki and with ethical approval from a suitable local ethics committee, and all patients will provide signed informed consent. In addition to standard dissemination efforts in the scientific literature, the data and outcomes will contribute to a smart digital platform and medical data lake. These will (1) help increase knowledge about the impact of immunotherapy, (2) facilitate improved interactions between patients, clinicians and the general population and (3) contribute to personalised medicine.

Read more on our publication here.

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Publication on: “Quality of life after treatment with immune checkpoint inhibitors for lung cancer; the impact of age”

Abstract

Introduction: 

Immune checkpoint inhibitors (ICIs) have revolutionized lung cancer treatment. However, it remains unclear as to whether changes in Health-Related Quality-of-Life (HRQoL) are associated with the age of lung cancer patients treated using ICIs. This study aimed to evaluate this possible association and to compare ICI-treated patients’ HRQoL scores with normative data of an age-matched non-cancer general population.

Methods: 

Lung cancer patients from the OncoLifeS data-biobank were included if they were treated with ICIs, irrespective of other treatments, at the University Medical Center Groningen between 2015 and 2021 and had completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTCQLQ-C30), both at the start of ICI treatment and after six months. Association of age as a continuous variable (per 10 years) and changes in HRQoL scores between baseline and 6 months was assessed using multivariable regression analyses. Clinical relevance of differences in HRQoL scores between OncoLifeS and the general population was classified into trivial, small, medium, and large, for three age groups (<60, 60-69 and ≥ 70 years).

Results: 

151 patients were included with a mean age of 65.8 years. An increase in age per 10 years was associated with a larger decrease in the summary HRQoL score(β = -3.28,CI95%-6.42;-0.14), physical(β = -4.8, CI95% -8.71;-0.88), cognitive(β = -4.51,CI95%-8.24;-0.78), role functioning(β = -5.41,CI95%-10.78;-0.05), symptom burden(β = -3.66,CI95%-6.6;-0.73), and smaller negative changes in financial difficulties(β = 6.5 95 % CI 3.16; 9.85). OncoLifeS HRQoL scores were lower than those of the general population and differences were most often classified as large and medium.

Conclusion: 

Older lung cancer patients experience larger deteriorations in most HRQoL domains after 6 months of ICI treatment. Also, these patients showed significantly lower HRQoL scores compared to the general population.

Read more on our publication here.

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PUBLICATION ON “Associations between treatments, comorbidities and multidimensional aspects of quality of life among patients with advanced cancer in the Netherlands—a 2017–2020 multicentre cross‑sectional study”

Abstract

Objective

To investigate associations between quality of life (QoL) and 1) immunotherapy and other cancer treatments

received three months before QoL measurements, and 2) the comorbidities at the time of completion or in the year prior to

QoL measurements, among patients with advanced cancer.

Methods A cross-sectional study is conducted on patients with advanced cancer in the Netherlands. The data come from the

baseline wave of the 2017–2020 eQuiPe study. Participants were surveyed via questionnaires (including EORTC QLQ-C30).

Using multivariable linear and logistic regression models, we explored statistical associations between QoL components

and immunotherapy and other cancer treatments as well as pre-existing comorbidities while adjusting for age, sex, socioeconomic

status.

Results

Of 1088 participants with median age 67 years, 51% were men. Immunotherapy was not associated with global

QoL but was associated with reduced appetite loss (odds ratio (OR) = 0.6, 95%CI = [0.3,0.9]). Reduced global QoL was

associated with chemotherapy (adjusted mean difference (β) = − 4.7, 95% CI [− 8.5,− 0.8]), back pain (β = − 7.4, 95% CI

[− 11.0,− 3.8]), depression (β = − 13.8, 95% CI [− 21.5,− 6.2]), thyroid diseases (β = − 8.9, 95% CI [− 14.0,− 3.8]) and

diabetes (β = − 4.5, 95% CI [− 8.9,− 0.5]). Chemotherapy was associated with lower physical (OR = 2.4, 95% CI [1.5,3.9])

and role (OR = 1.8, 95% CI [1.2,2.7]) functioning, and higher pain (OR = 1.9, 95% CI [1.3,2.9]) and fatigue (OR = 1.6, 95%

CI [1.1,2.4]).

Conclusion

Our study identified associations between specific cancer treatments, lower QoL and more symptoms. Monitoring

symptoms may improve QoL of patients with advanced cancer. Producing more evidence from real life data would help

physicians in better identifying patients who require additional supportive care.

Read more on our publication here.

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QUALITOP NEWSLETTER ISSUE 3

On WEDNESDAY 22nd of March, we published the third newsletter from QUALITOP. An overview on the latest updates of the project. Please click here to read the full newsletter.

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PUBLICATION ON “DEDUPLICATION OVER HETEROGENEOUS ATTRIBUTE TYPES (D-HAT)”

Abstract

Deduplication is the task of recognizing multiple representations of the same real-world object. The majority of existing solutions focuses on textual data, this means that data sets containing boolean and numerical attribute types are rarely considered in the literature, while the problem of missing values is inadequately covered. Supervised solutions cannot be applied without an adequate number of labelled examples, but training data for deduplication can only be obtained through time-costly processes. In high dimensional data sets, feature engineering is also required to avoid the risk of overfitting. To address these challenges, we go beyond existing works through D-HAT, a clustering-based pipeline that is inherently capable of handling high dimensional, sparse and heterogeneous attribute types. At its core lies: (i) a novel matching function that effectively summarizes multiple matching signals, and (ii) MutMax, a greedy clustering algorithm that designates as duplicates the pairs with a mutually maximum matching score. We evaluate D-HAT on five established, real-world benchmark data sets, demonstrating that our approach outperforms the state-of-the-art supervised and unsupervised deduplication algorithms to a significant extent.

Read more on our publication here.

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PUBLICATION ON “DEVELOPMENT OF A CORE SET OF PATIENT – AND CAREGIVER – REPORTED SIGNS AND SYMPTOMS TO FACILITATE EARLY RECOGNITION OF ACUTE CHIMERIC ANTIGEN RECEPTOR T-CELL THERAPY TOXICITIES”

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Publication on ”Health-related quality of life in cancer immunotherapy: a systematic perspective, using causal loop diagrams”

Abstract

Purpose

System science offers a unique set of tools, including causal loop diagrams (CLDs), for stakeholders to better grasp the complexity of factors surrounding quality of life. Because the health-related quality of life (HRQoL) of cancer immunotherapy patients exists within an intricate system affected by and affecting many factors across multiple dimensions, the development of a systems-level model can provide a powerful framework to aid the understanding of this complexity. We developed a CLD for HRQoL of cancer immunotherapy patients.

Methods

We first applied a literature-based approach to construct a CLD for patients following immunotherapy. We then iteratively reviewed and enhanced the CLD through interviews with subject matter experts.

Results

Based on the reviewed literature and subject matter expert input, we produced a CLD representing the system surrounding cancer immunotherapy patients’ HRQoL. Several feedback loops are identified that span clinical experiences, oncology teams’ perceptions about immunotherapy, social support structures, and further research and development in cancer immunotherapy, in addition to other components. The CLD enables visualization of thought experiments regarding how a change anywhere in the system can ultimately worsen or improve patients’ HRQoL.

Conclusion

The CLD illustrates the valuable contribution of a systems perspective to quality-of-life research. This systems-based qualitative representation gives insight on strategies to inhibit harmful effects, enhance beneficial effects, and inherent tradeoffs within the system. The CLD identifies gaps in the literature and offers a communication tool for diverse stakeholders. Our research method provides an example for studying the complexities of quality of life in other health domains.

Read more on our publication here.

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Publication on ”A Reference Architecture for Smart Digital Platform for Personalized Prevention and Patient Management”

The maturity of a new generation of information technologies, including the internet of things (IoT), wearables, cloud computing, Artificial Intelligence (AI) and machine learning, has led to the advent of smart domains, such as smart manufacturing, smart logistics, and smart healthcare. Smart healthcare brings unlimited opportunities to solve many of the problems of traditional medical systems, with the ultimate goal of realizing 4P medicine (Predictive, Preventive, Personalized, Participative). However, to realize this ambitious vision in such a highly regulated multi-disciplinary and sensitive domain, a mine of challenges needs to be effectively and efficiently addressed. A smart health digital platform that integrates all relevant (semi-) structured and unstructured health-related data is fundamental. The platform should incorporate a variety of care data, including vital medical information from medical records, current medication, imaging studies, lifestyle, genetic, demographic, psychological & psychosocial and patient-provided health data from exercise or health monitoring applications and medical pathways. These will lead to improving post-operative planning, reduce medical risks and costs, and generate more accurate therapy and increased Quality of Life (QoL) for patients. The main contribution of this article is a reference architecture for a smart digital platform for personalized prevention and patient management that acts as a roadmap for further R&D in this domain.

Read more on our publication here.

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QUALITOP Workshop for cancer patients

The event took place on 15th March 2022 and it was specially targeted to cancer patients.

Researchers and partners of QUALITOP project were able to give a comprehensive overview of the project and how it can improve the Quality of Life of patients. On the other hand, cancer patients had the opportunity to express their concerns, experiences and give valuable feedback on the project.

The recording is already available here.

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