D1.1 CORE DATASETSOF HEALTH CARE PROFESSIONALS, MULTIMORBIDITY AND INTRINSIC CAPACITY FOR GERONTEMODEL
Creators: name: Hamaker, Marije
name: O'Hanlon, Shane
name: Seghers, Nelleke
name: Rostoft, Siri
Publisher: name: Zenodo
Year: 2022
Subjects: geriatric oncology
multimorbidity
frailty
care trajectory

description: This deliverable describes the process that was used to develop the most important components of the Holis GV dashboard as well as the GerOnTe care pathway. These are summarised as the following datasets made openly accessible via ZENODO GERONTE community: - GERDAT002 -Composition of the health care professional consortium https://doi.org/10.5281/zenodo.6334681 - GERDAT001-Core multimorbidity dataset https://doi.org/10.5281/zenodo.6334599 - GERDAT003-Core intrinsic capacity dataset https://doi.org/10.5281/zenodo.6334723 In this process, we made use of variousmethods, including two scoping and three systematic literature reviews, patient interviews and focus groups, andfinally, four survey rounds and one online meeting withan expert panel of 39 oncologic and geriatric health care professionals involved in the care for older patients with multimorbidity and cancer.In this process, we developed five patient multimorbidity profiles based on the type of comorbidity, and the impact on decision-making as well as the subsequent care trajectory. These include: Profile 1 -Cardiovascular, metabolic and pulmonary disease; Profile 2-Disability, dependency and caregiver burden; Profile 3-Psychosocial health and cognitive impairment; Profile 4-Nutritional status and digestive system disease; and Profile 5-Concurrent cancer. We established a core set of four health care professionals who should be involved in the decision-making and care trajectory for every older patient with multimorbidity and cancer within the GerOnTe care pathway (cancer specialist, advancedpractice nurse, geriatrician, primary care physician); as well as an additional list of health care professionals who can be included as needed. We established standardized methods of communication and decision-making within the health care professional consortium, as well as a way of communicating with health care professionals not involved in the consortium itself.A second step was to establish the main information components that should be included in the common medical file that is used in the GerOnTe care pathway. These include: 1) a large image of the patient; 2) personal information about the living situation and current formal and informal care; 3) tumour information including recommendations of the multidisciplinary tumour board; 4) comorbidities; 5) medication and substance use; 6) non-cancer specific prognosis; 7) intrinsic capacity/frailty; and 8) patient preferences. For comorbidities, we developed a dataset of items that have such importance to the decision-making process that they need to be highlighted in the Holis GV dashboard. After literature review, input was received from the expert panel. Through an iterative process, it was decided which comorbidities were relevant and how these were best captured in data to provide to the health care professional consortium. This resulted in a list of 16 relevant somatic/psychiatric comorbidities to be included in the dataset provided to the health care professional consortium. In addition to a clinical judgement of the comorbidities by a geriatrician,both for the severity of the comorbid condition as well its impact on daily functioning, we developed a list of objective measurements that could further complement the comorbidity information in the GerOnTe care pathway. A similar process was followed for data on intrinsic capacity and frailtyresulting in the inclusion of 24 items across six domains.For patient preferences, we focussed on three types of preference: outcome preferences, decision control preference, and information preference. In this process, three systematic literature reviews including one meta-analysis, were performed and two series of patient interviews. For outcome preferences, we developed a new outcome prioritization tool called ONC-OPT, which included the following outcomes: 1) extending life; 2) maintaining independence; 3) reducing pain and other symptoms; and 4) limiting negative effects of cancer treatment. For decision control preference, we found significant heterogeneity in the older patient population, meaning that it is important to solicit this preference for each patient individually. This led to the inclusion of the control preference scale in the Holis GV dashboard. For information preferences, we developed a prompt list of questions that patients can use to become aware of questions that they may want to discuss with their health care provider. We also developed a list of tips that patients can use to improve their information with their health care professionals.