ONCORELIEF aims to improve post-treatment health status, wellbeing, and follow-up care of cancer patients in a patient-centric way: independent of the specific treatment and pathway points, but specific to each patient’s experience and needs, incorporating the patient’s illness experience and the psychosocial context

Gibin, Marta

Kosmidis, Thanos

Maturo, Antonio

Meggiolaro, Elena

Moretti, Veronica

Parolini, Margherita

Reis, Joaquim C.

Sullo, Francesco

English

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THE CONSTRUCTION OF A QUALITY OF LIFE WELLBEING INDEX FOR CANCER PATIENTS IN FOLLOW-UP:THE ONCORELIEF PROJECTThis project has received funding from the European Union’s Horizon 2020 Framework Programme for Research and Innovation under grant agreement no 875392.Copyright © 2020 The ONCORELIEF ConsortiumAntonio Maturo, Veronica Moretti, Marta Gibin – University of BolognaMargherita Parolini, Elena Meggiolaro, Francesco Sullo – IRCCS Istituto Romagnolo per lo Studio dei Tumori "Dino Amadori" - IRST S.r.lThanos Kosmidis – Care Across LtdJoaquim C. Reis – University of LisbonThe projectONCORELIEF aims to improve post-treatment health status, wellbeing,and follow-up care of cancer patients in a patient-centric way:independent of the specific treatment and pathway points, but specificto each patient’s experience and needs, incorporating the patient’sillness experience and the psychosocial context.ESHMS Conference 2022 2The projectONCORELIEF is based on:1. A downloadable application (Guardian Angel) available for portable devices, connected both with the ONCORELIEF platform and the patients’ sensing devices;2. A Back-end data platform where data are securely collected, anonymized and stored;3. An AI Engine built on top of the Back-end platform, which analyses data, extracts important features, produces meaningful AI models and updates them accordingly;4. An HCP Web app, allowing the HCPs to monitor patient data as well as evaluate and decide on the proposed suggestions.ESHMS Conference 2022Quality of Life Index• ONCORELIEF visualizes current health and wellbeing of the patient with a personal ONCORELIEF QoL Index.• It is based on:• the specific person (body);• cancer type and peculiarities (disease); • health literacy;• physical symptoms such as pain, etc. (symptoms); • how they feel and overall mental health such as anxiety, depression, positive and emotional distress or negative affect, etc. (feelings); • and how they live and work, including social capital, life satisfaction and socio-economic factors, exercise, nutrition and sleep (lifestyle).• The Pilots will focus on Acute Myeloid Leukaemia (AML) and Colorectal Cancer(CRC)ESHMS Conference 2022 4Quality of Life (ONCORELIEF index)5ESHMS Conference 2022Physical aspectsPsychological aspectsSocial aspects Spiritual aspectsQuality of LifeDefinition of User RequirementsESHMS Conference 2022 6Everyday experiences and needs of cancer patientsInteractions with the healthcare ecosystemUser requirementsCultural, Gender, Age and other aspectsPatient environment factorsESHMS Conference 2022 71. Initial brainstorming across cancer types:- Literature review on adverse events;- Patient input on the CareAcross platform;- Side-effects for the most common treatments;- Online discussion forums for cancer patients (e.g. Macmillan Cancer Support (UK), Cancer Research UK, Inspire.com, etc.)2. Initial Brainstorming for Acute Myeloid Leukemia & Colorectal Cancer:- Guidelines on treatments and medications for these cancer types; - Side-effects of treatments;- Online discussion forums and resources specifically for AML & CRC patients.Patient environment factorsESHMS Conference 2022 83. Brainstorming outcome: 182 needs4. Filtering of Brainstorming outcome based on:- Repetition/similarities;- Frequency;- Easy to report or there is a wearable device that can report this need- Measurable with intensitylevels/grades;- Etc.5. Final identification of Patient Needs for ONCORELIEFClinical and HCP environment factorsESHMS Conference 2022 91. Literature review2. Patient survey on 6 topics- Relationship with Healthcare Professionals (12 items)- Clinical Services (2 items) - Data and Digital Services (4 items)- “What would be important for you regarding a new digital product (a digital wearable)?“ (7 items)- Other Items/ Miscellaneous (8 items incl. psychosocial services)- The Patient’s Digital Situation (6 items)Key determinantsESHMS Conference 2022 10CRC Patients: 6 Items with a mean value between “essential” and “very important”Topic: My healthcare professionals…• listen and explain well • are well organized • treat me with honesty and optimism • instruct me how to help myself • involve me in the decision-making process Topic: Other items• Information on who to contact if I am worried after I leave the clinic AML Patients: 16 items with 3 items especially high on the importance scaleTopic: My healthcare professionals• make me feel at ease • give me time to fully describe my condition and say what I wanted to say • instruct me on how to help myselfKey determinantsThe following two items were consistently rated as being less important by the patients:• To know about /access to a self-help or support group.• To know about/access to a social or psychological service.The topic “My Own Digital Situation” gave the following results:My Own Digital Situation CRCAMLI often use (a) digital device/s. 63%75%Most of my friends/family use digital devices. 84%92%I can usually get help if I have technicalproblems.92%92%I feel confident using most digital devices. 76%58%I keep up to date with new ideas, e.g. newhealth apps.45%17%I already use a smart watch or an appsupporting me in after-care29%17%The survey also shows that a majority of patients use digital devices often, even if they are not very interested to get their own digital device (e.g. smart watch) to support them in after-care.Cultural, Gender, Age and other aspects• Cultural Aspects• Gender • Age• Socio-economic aspects• Other aspects (health literacy, social support, etc.)• Risk factors for introduction of biases through Big Data and Artificial Intelligence ESHMS Conference 2022 12Identified needsESHMS Conference 2022 13AML CRCCategory Included Needs Category Included NeedsDistress • Depression• Anxiety• Other needsDistress • Depression• Anxiety• Other needsPsycho-physiological• Sleep• Fatigue• Lack of sexual interest• Other needsPsycho-physiological• Fatigue• Other needsPhysical symptoms• Sore mouth• Hair loss• Weight loss• Other needsPhysical symptoms• Colitis• Appetite Loss• Peripheral neuropathy• Weight• Hand-Foot Syndrome• Other needsData Sources for Quality of Life IndexESHMS Conference 2022 14Measurements from wearable sensors (heart rate, respiration, temperature, oxygen saturation)Data from questionnaires answered by the patients Data from the medical record of the patient Selection of Patient Need Questionnaires15*testing phase III – in developmentIn addition: Well-Being with Questionnaire WHO-5Cancer Type Patient Need QuestionnaireAML Anxiety HADS (Hospital Anxiety and Depression Scale)AML Depression PHQ-9 (Patient Health Questionnaire-9)AML Fatigue BFI (Brief Fatigue Inventory)AML Hair loss No validated questionnaire availableAML Lack of sexual interest EORTC-SHQ-C22AML Sleep Problems ISI (Insomnia severity index)AML Sore Mouth EORTC-SHQ-OH15AML Weight loss Part of EORTC-QLQ-C30CRC Anxiety HADS CRC Depression PHQ-9CRC Fatigue BFICRC Appetite Loss Part of EORTC-QLQ-C30CRC Colitis EORTC-QLQ-CR29CRC Hand-foot syndrome Part of EORTC-QLQ-CIPN20*CRC Peripheral Neuropathy EORTC-QLQ-CIPN20*CRC Weight changes Part of EORTC-QLQ-C30 ESHMS Conference 2022Quality of Life (ONCORELIEF index)Output• Quality of Life index (0 – 1000)• 901 – 1000: Very Good• 801 – 900: Good • 601 – 800: Faulty• 401 – 600: Poor• < 400: Very poor• The ONCORELIEF QoL Index moves up or down in real-time, depending on how body, symptoms, feelings and lifestyle change.• When tracked over time, it will offer a good indicator of how the person’s health and wellbeing is evolving.16ESHMS Conference 2022Thank you!The Responsible AI Forum, Munich, 7 December 2021 17

The construction of a Quality of Life Wellbeing Index for cancer patients in follow-up: the ONCORELIEF project

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The construction of a Quality of Life Wellbeing Index for cancer patients in follow-up: the ONCORELIEF project

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