MyPal-Child study protocol: an observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patients

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.

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G456 Anytime, any place, anywhere: Offering Specialist Paediatric Palliative Care to Paediatric Oncology Patients

Archives of Disease in Childhood ◽

10.1136/archdischild-2014-306237.438 ◽

2014 ◽

Vol 99 (Suppl 1) ◽

pp. A190-A190

Author(s):

J. Harrop ◽

K. Brombley

Keyword(s):

Palliative Care ◽

Paediatric Oncology ◽

Oncology Patients ◽

Paediatric Palliative Care

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The Role of the Palliative Care Team in Keeping Paediatric Oncology Patients at Home

Palliative Care for Chronic Cancer Patients in the Community ◽

10.1007/978-3-030-54526-0_44 ◽

2020 ◽

pp. 497-504

Author(s):

Mary Ann Muckaden

Keyword(s):

Palliative Care ◽

Paediatric Oncology ◽

Palliative Care Team ◽

Care Team ◽

Oncology Patients ◽

At Home

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Happiness at the end of life: A qualitative study

Palliative & Supportive Care ◽

10.1017/s1478951521000262 ◽

2021 ◽

pp. 1-7

Author(s):

Tan Seng Beng ◽

Wong Ka Ghee ◽

Ng Yun Hui ◽

Ooi Chieh Yin ◽

Khoo Wei Shen Kelvin ◽

...

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

End Of Life ◽

Terminal Illness ◽

Terminally Ill ◽

Social Connections ◽

Targeted Interventions ◽

Pain And Suffering ◽

The University ◽

Eudaimonic Happiness

Abstract Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

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mHealth for the Monitoring of Brace Compliance and Wellbeing in Adolescents with Idiopathic Scoliosis: Study Protocol for a Feasibility Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18157767 ◽

2021 ◽

Vol 18 (15) ◽

pp. 7767

Author(s):

Verónica Martínez-Borba ◽

Carlos Suso-Ribera ◽

Amanda Díaz-García ◽

Judith Salat-Batlle ◽

Diana Castilla ◽

...

Keyword(s):

Idiopathic Scoliosis ◽

Feasibility Study ◽

Mobile Applications ◽

Clinical Utility ◽

Physical Factors ◽

Perceived Health Status ◽

Clinical Alarms ◽

Patient Responses ◽

Physical Consequences

Attempts to optimize monitoring of brace adherence prescribed to adolescents with idiopathic scoliosis (IS) have generally relied on sensors. Sensors, however, are intrusive and do not allow the assessment of psychological and physical consequences of brace use that might underlie poor adherence. Mobile applications have emerged as alternatives to monitor brace compliance. However, the feasibility and utility of these app-based systems to assess key psychological and physical domains associated with non-adherence remain unexplored. This feasibility study aims to test the usability, acceptability, and clinical utility of an app-based system that monitors brace use and related psychological and physical factors. Forty adolescents with IS daily respond to the app for 90 days. The patient responses may generate clinical alarms (e.g., brace non-adherence, discomfort, or distress) that will be sent daily to the medical team. Primary outcomes will be app usability, acceptability, and response rates. Secondary outcomes will include brace adherence, the number of side effects reported, number and type of clinical alarms, stress, quality of life, perceived health status, and mood. If accepted by patients and clinicians, apps may allow rapid detection and response to undesired events in adolescents undergoing brace treatment.

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Mortality & morbidity of paediatric oncology vs non-oncology patients admitted with neutropenia to paediatric intensive care unit

Pediatric Hematology Oncology Journal ◽

10.1016/j.phoj.2021.04.045 ◽

2020 ◽

Vol 5 (4) ◽

pp. S16

Author(s):

Sonali Mhatre ◽

Preetha Joshi ◽

Vinay Joshi ◽

Santanu Sen

Keyword(s):

Intensive Care Unit ◽

Intensive Care ◽

Paediatric Intensive Care Unit ◽

Paediatric Oncology ◽

Paediatric Intensive Care ◽

Oncology Patients

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Why Do Our Cancer Patients Sleep So Badly? Sleep Disorders in Cancer Patients: A Frequent Symptom with Multiple Causes

Oncology Research and Treatment ◽

10.1159/000518108 ◽

2021 ◽

pp. 1-7

Author(s):

Herwig Strik ◽

Werner Cassel ◽

Michael Teepker ◽

Thomas Schulte ◽

Jorge Riera-Knorrenschild ◽

...

Keyword(s):

Sleep Disorders ◽

Cancer Patients ◽

Treatment Options ◽

Ethics Committee ◽

Breathing Disorders ◽

The One ◽

Diagnosis Therapy ◽

The University ◽

Insomnia Symptoms

Introduction: On the one hand, sleep disorders in cancer patients are reported in 30–50% of cancer patients. On the other hand, specific causes for these sleep disorders are little known. This study was done to evaluate factors which may affect sleep of cancer patients. To our knowledge, this is the first study which includes return to work as one factor of sleep disturbance. Methods: 107 patients with various types of cancer treated in 2 hospitals were interviewed with a battery of questionnaires after having given informed consent. The questionnaires intended to detect abnormalities of sleep and related pain, breathing disorders, restless legs syndrome, depression, rumination, medication, and psychosocial distress. The study was approved by the ethics committee of the University of Marburg. Results: The analysis of the 6 sleep-related questionnaires indicated a sleep disorder of any kind in 68% of all patients. Insomnia symptoms were present in 48 patients (44.9%). Pain, depression, anxiety, and worries about the workplace were significantly related to sleep disorders. Conclusion: Sleep disorders are common in cancer patients. The causes are manifold and should be considered by caregivers during diagnosis, therapy, and aftercare of cancer patients. Tumour patients should actively be asked about sleep disorders. If these are present, they should be addressed, and as they have a large impact on quality of life, treatment options should be offered in cooperation with sleep specialists.

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Digital health interventions in palliative care: a systematic meta-review

npj Digital Medicine ◽

10.1038/s41746-021-00430-7 ◽

2021 ◽

Vol 4 (1) ◽

Author(s):

Anne M. Finucane ◽

Hannah O’Donnell ◽

Jean Lugton ◽

Tilly Gibson-Watt ◽

Connie Swenson ◽

...

Keyword(s):

Decision Making ◽

Palliative Care ◽

Systematic Reviews ◽

Psychological Symptoms ◽

Digital Health ◽

Evidence Synthesis ◽

Information Provision ◽

Health Interventions ◽

Meta Review

AbstractDigital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This meta-review applied a structured search of ten databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 publications. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described in studies within reviews. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making (13%), information provision or management (13%) and communication (9%). Across all reviews, mostly positive impacts were reported on education, information sharing, decision-making, communication and costs. Impacts on quality of life and physical and psychological symptoms were inconclusive. Applying AMSTAR 2 criteria, most reviews were judged as low quality as they lacked a protocol or did not consider risk of bias, so findings need to be interpreted with caution.

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