Congratulations on obtaining one of the two highest scores for your abstract submitted to EAPC! This is a huge achievement. How did you feel when you 1) heard this news and 2) found out that you would be presenting at one of the plenary sessions?
In January this year I found out I’d be presenting part of my PhD research to this large audience of experts in palliative care. I was in the library at King’s College London, sitting in the computer room among undergraduate students learning for their exams. I received some very odd looks from them because of my funny breathing setting in when panic hit me upon realising that I would be standing in front of a lot of people in Copenhagen in May this year!
I feel very grateful to the peer reviewers for giving me the opportunity to present my research. This is particularly so as the study combines two research interests that are relatively ‘niche’ in palliative care – the integration of haematology with palliative care and the statistics underlying the development and validation of outcome measures. Therefore it is a real pleasure and honour to be given this opportunity.
Bearing in mind that I’m not a scientist, can you explain your research to me?
The study that I am going to present is part of a larger programme of research that our team at the Cicely Saunders Institute has been undertaking together with Myeloma UK and St Christopher’s Hospice London.
The aim of this programme is to develop a patient-reported outcome measure for patients with multiple myeloma that can be used in routine care to measure their quality of life and capture their palliative care concerns.
Although there are questionnaires available, they have been developed in the context of clinical trials. We wanted to develop a short and practical tool that could be used by patients and clinicians to guide clinical care and that was developed with input from both these groups.
When developing questionnaires, it is not enough to write questions and then simply use them. There is a rigorous scientific process for making sure that the questions measure validly what one wants to measure (e.g. quality of life), and do so in a reliable way (e.g. patients give the same answer if they have not experienced a change in their condition). This process is known as validation and the science behind it is called psychometrics, literally meaning “measuring the soul”.
Questions in a questionnaire should be generated on the basis of a theoretical model. In our case we derived this from interviews with patients to find out what was important to their quality of life and how quality of life had been affected by myeloma.
We also showed them existing questionnaires and asked their views on whether aspects were missing. We then compiled this information and developed a first version of our questionnaire, the Myeloma Patient Outcome Scale (MyPOS), piloted this version and refined it.
The questionnaire was given to over 500 patients with myeloma and their relatives or friends to test whether it validly and reliably captured all the important aspects of quality of life in this group. In my presentation in Copenhagen I will specifically focus on the ability of the MyPOS to capture changes in quality of life over time.
Why do you think there is a need for this research?
Myeloma is the second most common haematological malignancy and is more common among older age groups and thus is ever increasing with the ageing of the population.
Although myeloma is treatable, it is not yet curable and approximately 80% of myeloma patients die within 3 to 4 years.
Research has shown that patients have unmet supportive care needs (Molassiotis et al 2011), a high symptom burden and low quality of life, even during treatment-free intervals in the stable phases of myeloma (Acaster et al., 2013).
Yet, we know that despite their unmet needs, patients mainly die in hospital and are not often referred to specialist palliative care services (as is the case for many patients with haematological cancers) (Howell et al., 2010).
New models of palliative care propose early and short-term involvement not driven by diagnosis and prognosis, but reflecting the complexity of unmet needs of patients and their families.
In order to determine who would benefit, good assessment is crucial to target services towards those with complex symptoms or emotional/social concerns during the fluctuating course of disease.
We propose a short and practical tool that could be used by patients themselves to screen for problems that need clinical attention and warrant referral to palliative care services.
What conclusions did you come to and who will use this research?
The MyPOS is a short, valid and reliable questionnaire that can be used in routine clinical cases to screen and monitor quality of life and palliative care concerns for people affected by myeloma. We learned that it captures all important aspects of quality of life.
Clinicians told us that they liked how the questionnaire made it easier for them to discuss difficult aspects. For example, the MyPOS asks about whether patients are worried about their sex life. This question was an ice-breaker for one of the consultants we interviewed, and allowed her to discuss this topic with her patients.
Most importantly the MyPOS is able to identify changes in the condition that would trigger a review of the patient and/or referral to palliative care. Patients were able to complete the questionnaire in a short time. It could therefore be used in clinics to monitor patient’s quality of life.
Therefore, the MyPOS is relevant for all groups – clinicians from the fields of both haematology and palliative care – and the patients themselves.
In order to further discuss with clinicians and patients how the questionnaire can be implemented in clinical practice and ways of integrating palliative care and haematology services, we will run a one-day conference on this topic in early December this year.
This is part of the Dame Cicely Saunders Celebration series, a programme of events to commemorate the ten-year anniversary of the death of Dame Cicely Saunders and to celebrate the continuation of her life’s work. You can find more information on our website, www.csi.kcl.ac.uk.
In your opinion, how does the EAPC Congress advance research in palliative care?
The EAPC is a unique opportunity for discussing new developments in research, by bringing together clinicians and researchers working in palliative care from among the world.
As researchers, this allows us to identify research questions relevant for clinicians but also to present new findings that hopefully will be implemented into clinical practice.
What are you most looking forward to about the Congress in Copenhagen?
For me, with the EAPC being hosted in Copenhagen, a special interest lies with the work of the Danish Palliative Care group. They are one of the few countries that have a system for nationally assessing patient-reported outcomes in clinical practice in form of the Danish Palliative Care database, something that is of particular interest to my area of work. I also look forward to the presentation of the results of the Danish Palliative Care trial.
I also particularly value the opportunity to meet colleagues and new researchers at our Cicely Saunders Institute exhibition stand during the conference.
In past years we had many delegates from different backgrounds coming to talk to us about their work, research ideas or being interested in our MSc and PhD opportunities.
It will also give me a chance to talk in more detail about the MyPOS and the Palliative Care Outcome Scale, from which the MyPOS is derived.
Listen to Christina present her research during the ‘Awarded Presentations’ plenary session at the 14th World Congress of the EAPC in Copenhagen.
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