Bárbara Antunes, Portugal, and Claudia Bausewein, Germany, explain how their longstanding interest in outcome measurement has led to their guest editing the current issue of an open access focused issue of the Annals of Palliative Medicine.
I’m a clinical psychologist and former EuroIMPACT Marie Curie Early Stage Researcher Training Fellow, a European Union-funded project of which the European Association for Palliative Care (EAPC) was a collaborator. Being based at the Cicely Saunders Institute, King’s College London, and having receiving training in multiple European palliative care research centres provided me with training in research in palliative care and allowed me to create a fantastic network of clinicians, researchers and scientists, from different areas and all sharing the same interest in advancing the field.
I have always had an interest in outcome measurement, specifically in patient- centred outcome measures, which is increasingly recognised as a fundamental aspect of providing quality health care, not just in palliative care, but in all areas of health care. Now, based in Portugal, I was delighted when Professor Claudia Bausewein accepted my invitation to co-guest edit a focused issue on this subject, as I knew her invaluable experience would ease the whole process.
Measurement of outcomes of care is paramount to ensure quality and efficacy of the care provided, regardless of diagnosis, setting, population or age. Evidence continues to build and it’s now clear that training on the use of these measures and proper, timely feedback of results, make patient-centred outcome measures powerful tools to quickly make a holistic assessment. It is then possible to act upon the most distressful issues, whilst assisting on developing a therapeutic plan, by benefiting communication among all involved.
We are grateful for the invitation to guest edit this open access focused issue of the Annals of Palliative Medicine, which offers an overview of use of outcome measures in advanced disease from different perspectives. The range of authors from different disciplines and contexts will hopefully be a plus in covering research, as well as practice in different countries and settings. Multiple measures are discussed as well as their many uses.
We present a historical development of outcome measures, followed by the importance of early integration/referral of palliative care in different specialties and acute care settings.
The development of paediatric palliative care assessment tools is discussed, as are the ethical challenges of using outcome measures in palliative care clinical practice.
We explore perspectives of patients, family caregivers and healthcare professionals on the use of patient-centred outcome measures in practice.
Health economics and economic outcomes in palliative and end-of-life care are discussed, namely, a more comprehensive approach to economic outcomes measurement by assessing effects on both costs and outcomes to aid decision makers to weigh up costs and benefits of alternative courses of action.
Finally, we hope this work is useful and would very much like to hear from readers. Please feel free to discuss this focused issue either below in the comments’ section of the blog and/or in the Annals of Palliative Medicine journal website.
A huge thank you to all authors and reviewers who gracefully accepted our invitation and contributed to the quality and scientific accuracy of the work published in this focused issue. Even though authors and co-authors are recognised in their work, we would very much like to acknowledge all reviewers for their hard work and thank them sincerely for improving all 12 papers of this focused issue.
More about the authors . . .
Bárbara Antunes, PhD, is a clinical psychologist: Center for Health Technology and Services Research (CINTESIS), Faculty of Medicine University of Porto (FMUP), Centro de Estudos e Investigação em Saúde da UC (CEISUC) in Portugal. She is also a Visiting Research Associate, King’s College London, Cicely Saunders Institute, London, UK. Contact Bárbara by email.
Claudia Bausewein is Director of the Department of Palliative Medicine, Chair for Palliative Medicine, Munich University Hospital, Germany. Contact Claudia by email.
Links and free resources on outcomes measures
- Annals of Palliative Medicine (Outcome Measurement for Advanced Disease Patients). Vol 7, Supplement 3 (October 2018). (Open access).
- Palliative Care Outcome Scale – POS
- Palliative Care Outcomes Collaboration.
- The International Consortium for Health Outcomes Measurement (ICHOM).
- Shirley Ryan AbilityLab.
- Repositório de Instrumentos de Medição e Avaliação em Saúde.