Research Research T he role and contribution of allied health professionals (AHPs) in the palliative stage of a patient's journey is increasingly being acknowledged (AHP Palliative Care Project Team, 2004). This recognition is reinforced by a statement of the UK's Department of Health (DH): 'Allied health professionals work across all healthcare settings, supporting people of all ages in their recovery from illness or in coping with disability. They enable children and adults to make the most of their skills and abilities, and to develop and maintain healthy lifestyles. They provide specialist diagnostic and treatment services and are often the critical link in the management of lifelong conditions and rehabilitation support' (DH, 2008, p 4). Palliative care has been defined as 'the active holistic care of patients with advanced progressive illness' (National Institute for Clinical Excellence (NICE), 2004, p 207). Traditionally, Alliedhealthprofessional'sviews onpalliativecareforpeoplewith advancedParkinson'sdisease it has been associated with end-of-life care and cancer; however, the concept has been extended to include care for both malignant and non-malignant long-term conditions, such as Parkinson's disease. The goal of palliative care is to achieve the best quality of life for patients and their families. However, it is argued that palliative care services in the UK will need additional resources to provide a comprehensive service to people with neurodegenerative diseases, to ensure they are given the same priority as patients with cancer (Clarkson, 2008). Many aspects of palliative care are applicable early in the course of a life-limiting condition such as Parkinson's disease (Department of Health, Social Services and Public Safety, 2010). Effective symptom control, and interventions to assist with activities of daily living are examples of such aspects (Laakso, 2006;

IntroductionElectronic patient-reported outcomes (ePROs) have tremendous potential to optimise palliative and supportive care for children with cancer, their families and healthcare providers. Particularly, these children and their families are subjected to multiple strains caused by the disease and its treatment. The MyPal digital health platform is designed to address these complex demands by offering pursuant ePRO-based functionalities via two mobile applications, one developed for children and the other for their parents.Methods and analysisIn this observational prospective feasibility study, 100 paediatric oncology patients aged between 6 and 17 years and at least one of their parents/legal guardians will be recruited at three clinical sites in two European countries (Germany and Czech Republic). They will use the mobile applications which are part of the novel digital health platform. During a 6-month study period, participants will complete various ePROs via the applications addressing quality of life, satisfaction with care and impact of the disease on the family at monthly intervals. Additionally, priority-based symptom reporting is integrated into a serious game for children. Outcomes that will be assessed concern the feasibility and the evaluation of the newly designed digital health platform to contribute to the evidence base of clinical ePRO use in paediatric oncology and palliative care process.Ethics and disseminationThe MyPal-Child study obtained ethical approval from the Ethics Committee responsible for the University of Saarland, that is, the Ärztekammer des Saarlandes, the Ethics Committee of the Medical School Hannover and the Ethics Committee of the University of Brno. Study results will be disseminated through scientific publications, presentations at international conferences, congresses and a final report to the European Commission. General publicly accessible information can be found on the project website (www.mypal-project.eu) and social media.Trial registration numbersU1111-1251-0043, DRKS00021458, NCT04381221.

No abstract

IntroductionThe systematic collection of electronic patient-reported outcome (ePRO) in the routine care of patients with chronic haematological malignancies such as chronic lymphocytic leukaemia (CLL) and myelodysplasia syndromes (MDS) can constitute a very ambitious but worthwhile challenge. MyPal is a Horizon 2020 Research & Innovation Action aiming to meet this challenge and foster palliative care for patients with CLL or MDS by leveraging ePRO systems to adapt to the personal needs of patients and caregiver(s).Methods and analysisIn this interventional randomised trial, 300 patients with CLL or MDS will be recruited across Europe. Patients will be randomly allocated to early palliative care using the MyPal system (n=150) versus standard care including general palliative care if needed (n=150). Patients in the experimental arm will be given access to the MyPal digital health platform which consists of purposely designed software available on smartphones and/or tablets. The platform entails different functionalities including physical and psychoemotional symptom reporting via regular questionnaire completion, spontaneous self-reporting, motivational messages, medication management and a personalised search engine for health information. Data on patients’ activity (daily steps and sleep quality) will be automatically collected via wearable devices.Ethics and disseminationThe integration of ePROs via mobile applications has raised ethical concerns regarding inclusion criteria, information provided to participants, free and voluntary consent, and respect for their autonomy. These have been carefully addressed by a multidisciplinary team. Data processing, dissemination and exploitation of the study findings will take place in full compliance with European Union data protection law. A participatory design was adopted in the development of the digital platform involving focus groups and discussions with patients to identify needs and preferences. The protocol was approved by the ethics committees of San Raffaele (8/2020), Thessaloniki ‘George Papanikolaou’ Hospital (849), Karolinska Institutet (20.10.2020), University General Hospital of Heraklion (07/15.4.2020) and University of Brno (01-120220/EK).Trial registration numberNCT04370457.

The Palliative Hub has the potential to become an integral element in meeting the palliative care information and education needs of the entire community and is an example of an innovative and collaborative project across the island of Ireland, which could be translated across other jurisdictions.