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A research agenda in pain and palliative care

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Etik – Dilemmaer

Etik – Dilemmaer

Dansk Forskningsnetværk for Sygeplejersker i Kræftfeltet (DFSK)/ Danish Cancer Nursing Research er et nationalt netværk som blev oprettet i 2016 med det formål at: ∫ Synliggøre dansk forskning udført af sygeplejersker rettet mod kræftpatienter og deres familier nationalt og internationalt ∫ Samarbejde om gennemførelse af konkrete forskningsprojekter blandt netværkets medlemmer ∫ Søge indflydelse og bidrage til forbedring af den kliniske sygeplejepraksis til kræftpatienter og deres familie.

DFSK har pt. 46 medlemmer som alle er sygeplejersker, heraf har 36 en forskeruddannelse (Phd) og 10 er Phd studerende. Netværket mødes flere gange årligt. Denne faste klumme skrives af netværkets medlemmer, så der kan synliggøres hvilken mangfoldighed der er i kræftforskningen blandt sygeplejersker.

Geana Kurita

Professor of Anaesthesiology with Special Focus on Nursing in Pain and Palliative Medicine, affiliated to Department of Anaesthesiology, Pain and Respiratory Support, Neuroscience Centre, Department of Oncology, Centre for Cancer and Organ Diseases, and Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen.

I am Brazilian and have a bachelor’s in nursing, besides master and PhD degrees. I have worked as a full-time researcher at Rigshospitalet in Denmark for the last 15 years. In September 2021 I became a Clinical Professor of Anaesthesiology with Special Focus on Nursing in Pain and Palliative Medicine’ at the Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen. My professional research agenda has focused on pain and palliative care and my main scientific contributions have been within these fields. Some of the associated study topics are prevalence of chronic pain and opioid use, health-related quality of life, symptoms, treatment effects, models of delivering palliative care in patients with cancer, and palliative needs in patients with other life-threatening illnesses. The work within these two patient groups (palliative and chronic pain) and their families has provided the opportunity to develop, transfer, and test new knowledge in both populations.

Currently, my professorship research plan is based on four lines of research, which aim at identifying and providing necessary knowledge and understanding of the health problems/needs of patients with chronic non-cancer pain and patients with cancer/life-threatening illnesses. They will help us to optimize the decision-making process, plan and test interventions/educational programs/strategy models to improve care provision for patients, support their informal caregivers (relatives), develop recommendations to guide the clinical practice, and influence public health policy. There is a strong focus on national and international collaborations, research education of graduate students, improvement of clinical practice, and service to society.

Specific lines of research and projects included in my research plan are the following:

1. Palliative care in patients with malignant and non-malignant diseases: There has been growing awareness of the importance of providing palliative care to patients with cancer and patients with other progressing chronic diseases not only at the end stage of disease trajectory, but also in earlier phases. This research area aims to provide knowledge regarding palliative care needs in patients and their informal caregivers to develop and implement interventions, including patient-centered care pathways, to provide better care and support to them. Improvement of health-related quality of life by provision of symptom management and a holistic approach to relief of suffering are the main goals.

Currently two projects are in development. The first is entitled “The effect of specialized palliative telemedicine for patients with advanced cancer at home” (TeleSPC), which is a randomized clinical trial developed in collaboration with the Section of Palliative Medicine – Rigshospitalet and supported by The Danish Cancer Society (2022-2023). It will include adult patients with cancer and the primary aim is to investigate the effects of specialized palliative care enriched with a dyadic psychological intervention delivered by telemedicine at home on the patients' health-related quality of life. This project is inspired on Domus, the first randomized clinical trial conducted in Denmark regarding a systematic fast-track transition from oncological treatment to dyadic spe-

cialized palliative home care (Nordly et al. 2019), and it is adapted to facilitate collaboration between health care sectors, patients and informal caregivers. Collaborators in this project are Annika von Heymann, Camilla Lykke, Ditte Johansen, Dorte Larsen, Helle Gyldenvang, Henrik Larsen, Mai-Britt Guldin, Nina Petersen, Per Sjøgren, Trine Lundbye, Ulla Mathiesen, and Ulla Tange. The second is entitled “MyPath – Developing and implementing innovative Patient-Centred Care Pathways for cancer patients”, which is an EU-funded, multi-stakeholder implementation project with collaboration of nine European clinical partners, five associated partners representing patient and professional organizations, and two enterprises, all with specific expertise (2022-2027). It will develop and implement an innovative digital solution that facilitates communication between healthcare providers, patients, and caregivers to improve cancer care (https://mypath-cancercare.eu/).

I have also collaborated with other researchers in projects regarding palliative care needs in patients with organ failure, whose primary investigators are consultant and PhD Inge Eidemak (project supported by Capital Region of Denmark) and post-doc nurse Camilla Lykke (project supported by Aase and Ejnar Danielsens Foundation). A high symptom burden has been found in patients with renal failure, intestinal failure, heart failure, and cystic fibrosis. In addition, relatives/informal caregivers of these patients also reported moderate/severe caregiving burden.

2. Pain epidemiology, assessment, and management: Chronic pain has huge consequences for the individual and society. It has a multidimensional nature and causes suffering and economic burden, among others. The prevalence of chronic pain has increased in the Danish population over the last 20 years reaching 27% in 2017 (Ekholm et al 2021), which requires close monitoring and public health measures for effective control. Therefore, it is utterly relevant to provide information that can lead to development of evidence-based medicines, future clinical guidelines, and target areas of preventive medicine in the area of chronic pain.

Our research group is presently working on the project “Chronic non-cancer pain issues in Denmark: epidemiological aspects, prevention and intervention”, which is supported by Novo Nordisk Foundation (20212026). Three work packages (WPs) compose the project: Trajectories of chronic non-cancer pain in the Danish population, Pre-habilitation interventions to empower patients with chronic pain, and Preventive interventions for chronic pain. In summary, WPs address key issues as risk factors and consequences of CNCP, develop and test interventions based on patient education and empowerment to reduce transition from simple chronic pain (lasting 3 months or more) to complex chronic pain (above 3 months affecting several domains of life), and support self-management to stop loss of functioning, increase well-being, and qualify patients to collaborate with multidisciplinary pain centres as active partners. Collaborators in this project are Suzanne Herling (co-leader), Hanne Konradsen, Klaus Klaus Kirketerp-Møller, Ola Ekholm, Per Sjøgren, Rikke Baes, and Runne Vedelsdal. PhD student: Mark Ørnskov.

3. Effects of long-term treatment with opioids: The increased frequency of prescribing opioids for chronic non-cancer pain has raised concerns regarding iatrogenic adverse effects (e.g., addiction, cognitive dysfunction, suppression of immune and endocrine function), which may also occur in patients with cancer pain on long-term opioid therapy. Long-term consequences of opioid treatment have become very relevant, because currently patients with cancer survive or live longer with the disease than previously, and they are often treated with opioids for much longer periods of time. We have worked on projects based on cancer and noncancer pain patients who are treated with opioids and they have given us the opportunity to understand the longterm consequences of opioids in these two distinct populations. I am the main supervisor of physician Pernille D. K. Diasso, who is currently writing a PhD thesis on opioid suppression of the endocrine system in patients with chronic non-cancer pain. This is probably the first Danish thesis about the theme. It will be defended in 2023.

4. Systematic reviews for evidence-based practice: The aim to summarize and evaluate findings of individual studies, assessing their limitations/quality and clinical contribution. It makes easier to understand the available evidence and more accessible to decision makers. I have collaborated with international societies regarding the development of clinical guidelines on opioid for cancer pain, pain treatment, and palliative care, which are based on several systematic reviews. These guidelines can also influence public policy, calling for attention to underrecognized health problems, insufficient services, preventive interventions and advocate better delivery of services to those in need. In last years, I have collaborated with the European Association for Palliative Care, American Society of Clinical Oncology, and European Respiratory Society.

Nowadays we are becoming more aware of the gaps in clinical practice and more frequently looking for new ideas and strategies to enhance healthcare as implementation of research results into practice. Hopefully the research we are undertaking is strengthening evidencebased care, building and helping to develop knowledge about what is the best for the patients and society.

For more details regarding our Pain and Palliative Care Research Group and research strategy, please contact geana. kurita@regionh.dk.

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