Cancer patients’ perceptions of cachexia – how to make a questionnaire

Even though cachexia affects the lives and trajectories of a large number of cancer patients, their own experiences of involuntary weight and muscle loss remains severely under-investigated.

Health-related quality of life (HRQOL) is considered one of the most important patient-reported outcomes (PRO), however few existing QOL questionnaires address patients’ own perceptions of cachexia.

– For a long time, cachexia was not a prioritized area of palliative care research. It was generally accepted that muscle and weight loss came with the territory of the disease, and that a reduced food intake could not always be helped. Now this is finally changing, Dr. Tora Solheim, physician and researcher at PRC in Trondheim, explains.

Several large studies have been conducted the last 5-10 years, investigating assessment and classification as well as treatment of cachexia. The patient perspective, though, has remained unknown territory.

Developing an assessment tool

A study led by Sally J. Wheelwright at the University of Southampton, UK, initiated the development of a questionnaire for cancer patients with cachexia, as a supplement to the EORTC (European Organisation for the Research and Treatment of Cancer) QLQ-C30 form.

The study was conducted as follows:

  • Identification of HRQOL issues based on a literature review and interviews
  • Wording of 44 questionnaire items
  • Pilot testing of the questionnaire in eight European countries

A phase four validation study is currently being conducted, using a revised version of the questionnaire with 24 final questions.

Pawing the way for better descriptions of cachexia

PRC has been involved throughout the project, including the pilot study. The cachexia researchers in Trondheim will also join phase four, including patients with all stages of
cachexia. Based on experiences from the pilot, they are careful optimists, but find it promising that food intake and weight loss are finally on the agenda.

– Many patients feel that it is valuable to be asked these questions and be allowed to talk about issues related to their weight, because it is a concern for them. It has become a central part of patient information, researcher and clinical nutritionist Trude Balstad says.

In Trondheim the questionnaire is already implemented into another research project, the Menac trial.

– The largest challenge is related to the number of questions. Many of our patients are very ill, and have problems completing the questionnaire. However, this is a way forward to a better description of cachexia, and our patients understand that we want to learn whether they need help and if the treatment they receive is actually working, Tora Solheim says, and points to a general issue related to HRQOL questionnaires.

– There are so many available, but the differences between them are so big it sometimes feels as we are comparing apples and pears.


The validation study, an international field study for the reliability and validity of the EORTC cancer cachexia module (the EORTC QLQ-CAX24) and the EORTC QLQ-C30 for assessing quality of life in cancer patients with cachexia, is currently recruiting centers.

More information about the project can be found at


Why should an Italian statistician decide to get a PhD in palliative care at NTNU?

Cinzia Brunelli


Cinzia Brunelli (3rd from left) defended her thesis in Milan, Italy 25 November 2016.

There are multiple answers to this odd question, some related to my personal history and some broader ones, related to the role research is playing in palliative care, an exciting and rapidly developing area of science that is destined to have vast impact on the lives of many.

Starting from the beginning, I’ve always liked numbers more than words – and I still do! That’s why I graduated in statistics, economic statistics to be precise, at the University of Padua in 1992. Just after graduation, I started my collaboration with the Psychology Research Unit at the National Cancer Institute of Milan where Dr. Marcello Tamburini was looking for a person with methodological research training to work on his pioneering projects on quality of life and patient reported outcomes in oncology. The Psychology Unit team worked in close collaboration with the Palliative Care Unit directed by Vittorio Ventafridda and indeed the very first scientific paper I co-authored, was focused on pain assessment and was published in 1994. The collaboration with these two units was very fruitful and stimulating for many years.  As a statistician I was a permanent part of the research team, involved in research projects all the way from protocol planning through analysis to interpretation. In this way my contribution could be more than sample size calculation or data analysis. This allowed me to develop professional skills characterized by  the methodological knowledge of applied statisticians, but also by an understanding of the clinical matter deeper than  the average of other methodologists; I dare define myself the «missing link between statistics and clinic», two worlds that may sometimes suffer from difficulties in communication. However, I was the only statistician in the group and this has certainly made me feel «isolated» when I could not share doubts and discuss solutions with «my own kind of statisticians».

Emerging collaboratives and networks

Meanwhile, palliative care was growing in Europe and Italy, and research became an emergent field for national and international collaboratives. In 2000 I started to actively participate in the research congresses of the European Association for Palliative Care Research Network (EAPC RN) where I met other research groups and in particular the palliative care group from St. Olavs Hospital and  NTNU directed by Professor Stein Kaasa. Congresses were also an opportunity for me to meet and share experiences with other statisticians and researchers working primarily in palliative care. But it was in 2007 with a formal involvement within the European Palliative Care Research Collaborative (EPCRC), that I joined an international research collaboration on a regular basis.

The EPCRC project was funded by a grant from the European Union’s 6th Framework and was lead by Stein Kaasa. Within the same project, professor Caraceni, director of the Palliative Care Unit in Milan, was leading a work package on pain treatment and  I was involved in giving my methodological contribution  to the development of evidence based guidelines on the use of opioids for cancer pain. The EPCRC project made me try the true taste of international, multiprofessional, enjoyable and  high quality research experience: we had regular meetings in the different countries of the collaborative, we planned multicentre internationals studies and shared previously collected data for secondary analyses, and we learned to understand each other as different professionals with different cultural backgrounds. The cooperation continued, and still continues, within the framework collaboration established between my institution, the Fondazione IRCCS Istituto Nazionale Tumori in Milan and the PRC in Trondheim through a number of common research projects.

Why? Why not?

Working at an international level opens your mind and you start thinking bigger: you understand that if you have innovative ideas, if you belong to a reliable research network and have adequate research competence and experience, you can actively be purposeful. I was trained as a statistician, a profession which plays an essential part in medical research now, but which is most often destined to cover the role of the follower. I was 46 years old in 2012 when I learned about a new international PhD programme at NTNU. I thought: «Why not? Why not try to become more self-standing as a researcher?» So my personal answer to the initial question is: «I decided to get a PhD to be a driver more than a follower». I believe that freedom and responsibility are the two key words of PhD training experience:  supervisors can be very helpful but they are often busy, which means you have to manage tasks properly within the due time relying on your own resources.

The second part of the question was «Why Norway?» Unfortunately, in Italy we do not have PhD training in palliative care, but I knew that NTNU was welcoming students from abroad. Hence, with the support of my two supervisors Professors Augusto Caraceni and Professor Stein Kaasa I applied for PhD training at NTNU. Thanks to the funding I received from PRC, from my institution  and from the Floriani Foundation, a non-profit private foundation promoting assistance and research in palliative care in Milan (, I could dedicate myself full time to my research project. 25 November 2016 I defended my thesis, «Cancer pain assessment, classification and patient reported outcomes in the evaluation of treatment effect», at a dissertation ceremony arranged by NTNU in Milan.

My PhD experience was very positive.  My supervisors provided outstanding scientific advices and were very supporting with me during these three years. I also appreciated the warm and welcoming atmosphere I found at PRC among other PhD candidates, post-docs and administrative staff always ready to help with both scientific and organizational issues. I have really enjoyed my residency periods in Trondheim, its wonderful summer and fall colors. I admired the scenery when walking along Nidelva or hiking in Bymarka.  I have actually missed the opportunity to learn at least a little Norwegian: everybody speaks English so well that it is actually not needed! I have enjoyed shrimps, bacalao and spelt bread and I have also learned to enjoy Norwegian coffee… the trick is simply not to call it «coffee»!

But I won’t miss all that: the research collaboration between Fondazione IRCCS Istituto Nazionale Tumori  and PRC is still continuing and active! Hopefully in the future other Italian researchers will seize the opportunity to enter the PhD training programme in palliative care to start taking the driving seat of their research careers.

The international seminars of PRC and EAPC RN

An update, a training ground and a meeting place

In 2011, the international seminars were initiated as a supplement to the larger research congresses. The need for a smaller, more focused arena for palliative care researchers to meet and discuss their results was the backdrop for this establishment, and the first seminar was held in Copenhagen in October 2011.

The GW Hanks seminar

Since then, the seminars have developed both in content and form. For the PRC and EAPC RN collaboratives this annual meeting is a place for researchers at all levels to come together and dicuss both existing and upcoming research projects, as well as research strategies, opportunities and challenges. The last years abstract-driven sessions have been introduced, and in 2015 the first ever abstract award winner will be presented.

All sessions are held in plenary, ensuring an intimate atmosphere and lively discussions among the entire audience.

For the last three years, the seminar has been entitled the «GW Hanks seminar» as a tribute to Professor Geoffrey W. Hanks, co-founder of the PRC, who passed away in 2013. The key note lecture at each seminar also reflects this.

Capital of the north

The fifth edition of the PRC / EAPC RN seminar is held in Leeds, UK, 15-16 October 2015. For two days researchers will meet in the «northern capital» of the UK and get updates on topics such as symptom management, complex interventions and treatment guidelines. Dr. Florian Strasser from Switzerland has been invited to give the GW Hanks lecture on «Integrated symptom assessment and management».

Leeds Town Hall

In addition to these themes, nine abstracts have been chosen for oral presentation, widening the scope of the seminar. The seminars have become a popular arena for younger researchers to present their findings, and for seniors to give their valuable input and guidance. This year we will have presentations on several aspects of symptom assessment and management, new results from drug trials and perspectives on symptoms besides pain and cachexia.

Does research lead to clinical change?

The seminar adresses the question «How can research inform clinical practice in palliative care?» Hopefully two days in Leeds will bring new insights to this approach, and perhaps also some new ideas?

Download the final programme and register now at

Update of EAPC opioid guidelines for cancer pain

The EAPC is in the process of updating the opioid cancer pain guidelines from 2012, published in Lancet Oncology. The work is undertaken by the research network, and it is anticipated that the same methodology as last time will be followed.

The GRADE system, in fact,  is used to develop evidence based clinical recommendations: 16 topics were included in the previous set of recommendations on the use of opiods and will be revised, but this will be more than an update.

The content will be expanded to 11 new topics, including  assessment and classification, non-opioid drugs such as NSAIDs, paracetamol, corticosteroids and ketamin. The role of radiotherapy bisphosphonates and invasive analgesic techniques  in cancer pain will also be considered. Therefore, the new guidelines will be on: Pain management of cancer patients.

The work is undertaken by the EAPC Research Network, with Augusto Caraceni, Marie Fallon and Stein Kaasa as leading authors. They are collaborating with 26 international experts, each of them coordinating literature reviews to cover all topics.

It is well recognized that guidelines are not often fully implemented into clinical practice. Therefore, in this new version we will also include a recommendation of implementation of the pain guidelines into clinical practice, and thereby increase the potential for improved pain control in patients with cancer.

In order to have a basic discussion about recommendations, we would like to receive input from all our health care colleagues.

We would like to get your advice and feedback. Please send us an e-mail if you would like to contribute to this work.

We are looking forward to receiving your input and collaboration in order to make the best guidelines for cancer pain.


During the recent EAPC congress in Copenhagen, the outlines of the guidelines were presented. If you are interested in details, the power point presentations from this session are available for download here:

Depressive symptoms in the last days of life

– by Elene Janberidze

Depression and depressive symptoms in general are burdensome, especially for patients Elene portrettwith advanced stage cancer. Many of those patients have poorer prognosis and poorer quality of life. The prevalence of depression and depressive symptoms in those patients vary from 2% to 56% which could be due to that we as health care providers are not good enough to identify depression and depressive symptoms. We may think this is a normal part of having cancer and also part of the dying process. However, some patients experiencing depressive symptoms and/or depression can be treated and thus both the patients and their families may have better quality of life. Therefore it is important to study these patients.

The main reason for choosing patients with end-stage cancer in their last 24 hours of life was that patients in this very last period of life are not so well investigated. This might be due to the fact that many are too ill to be included in studies. As there were data available in this large population based study form the Netherlands, it was an opportunity to learn more about cancer patients at the very end of life. Usually we recommend to ask the patients to report about their subjective symptoms, however at this stage, such information in most cases has to be collected by asking relatives or by letting health care providers report about the symptoms as it was in this study.

Our findings showed that according to attending and treating physicians more than one third of the patients were experiencing depressive symptoms in the last 24 hours of life. It seems like that patients older than 80 years had less severe depressive symptoms than the younger. Physicians working in nursing homes in the Netherlands reported patients to have more severe symptoms of depression than general practitioners and physicians in other specialties. In patients with more severe symptoms of depression also pain specialists or palliative care consultants and psychiatrists or psychologists were involved in the care. Patients having depressive symptoms were also having other symptoms such as fatigue, confusion, and anxiety.

Diagnosing depression is challenging, especially in patients with somatic illnesses such as cancer. Symptoms such as fatigue can be related to the cancer, its treatment or interpreted as a sign of depression. Depressive symptoms could be viewed as a normal part of the dying process or could also indicate presence of depression. To be able to screen for and to recognize depressive symptoms is an important task for health care providers requiring evidence based knowledge and skills in order to offer appropriate care. If depressive symptoms are recognised early, patients can be offered adequate treatment. Doctors should investigate the patient further and recommend psychological interventions as needed. However, at the very end of life (last hours and days), it is normal that patients are withdrawing as part of the dying process.

The article which describes the study was recently published online in BMJ Supportive & Palliative Care: Janberidze E, Pereira SM, Hjermstad MJ, Knudsen AK, Kaasa S, van der Heide A, Onwuteaka-Philipsen B; Depressive symptoms in the last days of life of patients with cancer: a nationwide retrospective mortality study, on behalf of Euro Impact; 2015.

Hello and greetings from Canada!

My name is Kristin and I am a medical student in Canada who is in Trondheim, Norway, for a research exchange with the PRC.  The exchange program is organized by the International Federation of Medical Students’ Association (IFMSA) and it facilitates medical students from around the world participating in research or clinical observerships in other countries.  The aim of the program is to increase international collaboration and to expose medical students to various medical systems and different clinical experiences.  Through this program I was assigned to work with the PRC at St. Olav’s Hospital in Trondheim. 

Kristin and Erik in the Cancer Clinic 280814

Visiting the Cancer Clinic together with Erik Løhre, head of the Palliative Unit.

The exchange is one month long so I have been spending the month of August here, working on research related to pain classification and assessment in cancer patients.  My role has been to help one of the post-doctorate fellows (Yulan Lin) with a systematic literature review that aims to summarize the pain classification and assessment systems and methods that are currently being used in cancer pain research around the world.  When I first arrived I helped conduct database searches of MEDLINE, EMBASE, Cochrane Central Register, PsychINFO, CINAHL and AMED to identify relevant articles in the literature.  Since the initial search I have been screening the abstracts to flag papers that are relevant to our review.  The next step is to review the full articles and extract information about the types of assessment and classification tools that are used to characterize cancer pain.   

It has been interesting for me to learn about writing a systematic review and to also compare how research is conducted here in Norway to how it is done in Canada (seems very similar to me!).  I also had the opportunity to tour the pain management and cancer care clinics here at St. Olav’s which was a great chance for me to observe similarities and differences from our hospitals in Canada, especially because the pain clinic here is very well established and well regarded in the palliative care field.  Also, chatting with medical students here has really been interesting, and contrasting the medical education system in Norway to the one I am enrolled in has given me some ideas of how to improve our system in Canada!  Overall it has been a fantastic experience and the researchers and staff at the PRC have been wonderful – making me feel welcome and giving me the chance to explore the Norwegian health care system.

Thank you everyone!

Kristin Ambacher

Whom is the study about?

– by Katrin Rut Sigurdardottir

This is a fundamental question when reading a scientific paper. Unfortunately, all too often the description of the patient population is insufficient in trials in end-of-life and palliative care. Many of us have read interesting papers from studies with impressive results, but due to the lack of an adequate description of the sample, the results have been useless to us.

Patients entering our trials, as well as health care professionals putting much effort into data collections, deserve that study results can be generalized to groups and settings beyond those included in the trial. One of the main reasons for many palliative care patients to participate in clinical studies, is that the results can be of help to others.

The need to standardize reporting has been recognized for many years. The PRC in collaboration with the EAPC-RN and the project PRISMA started in 2010 a process to develop and reach consensus on a basic set of variables to describe a palliative care cancer population. In a five step Delphi exercise, 64 experts from 30 countries reached consensus on 31 variables to be included in the EAPC Basic Dataset. The paper describing the work was recently published online in Palliative Medicine:

Katrin R Sigurdardottir, Stein Kaasa, Jan H Rosland, Claudia Bausewein, Lukas Radbruch, Dagny F Haugen, on behalf of PRISMA: The European Association for Palliative Care basic dataset to describe a palliative care cancer population: Results from an international Delphi process.

The EAPC basic dataset of patient characteristics and medical variables provides a unique platform for standardizing research reporting, and a common framework for researchers, clinicians, and other palliative care stakeholders. The EAPC basic dataset is now available as PDF files on the PRC websiteand will soon also be available on the EAPC homepage.

EAPC_Patient form_2

I strongly encourage researchers and clinicians to start using the dataset. We owe that to patients participating in our trials.