2013 San Antonio Breast Cancer Symposium (SABCS)

Breast cancer psychosocial and survivorship issues: are we doing better?

Dr Lesley Fallowfield - University of Sussex, Brighton, UK

http://ecancer.org/conference/435-2013-san-antonio-breast-cancer-symposium--sabcs/video/2583/breast-cancer-psychosocial-and-survivorship-issues--are-we-doing-better.php

My plenary lecture tomorrow is entitled ‘Psychosocial and Survivorship Issues: Are we doing better?’ and I guess I’ve been asked to do this plenary talk because I’m really so old now. I’ve been working in things psychosocial, particularly to do with breast cancer, for about the last thirty years and I’ve seen some extraordinary changes during those last three decades. So essentially my talk will be looking at whether or not with the sorts of advances we’ve seen in treating the disease have been accompanied by equal advances in treating the more psychosocial side of disease.

How do you measure quality of life in clinical trials?

One of the important things that we have to take account of when we’re looking at new treatments for breast cancer is what are the harms as well as the benefits of them. I think one has to admit that over the last couple of decades we’ve seen some amazing progress made with new sorts of novel treatments, new techniques in terms of surgery and management of the axilla. But particularly when you look at the drug trials, despite the benefits in terms of improved overall survival or progression free survival, nothing actually comes without cost and we don’t always measure or recognise some of the iatrogenic harms created by treatment. So an important thing over the last few years has been increasing awareness of how we must include quality of life type assessments coming directly from the patient; patient reported outcome measures.

The good news is that we’ve got much smarter over the last decade or so in terms of tightening up the psychometrics around ensuring that we’re really asking the right questions of patients. It’s no good actually just calling a questionnaire a quality of life assessment but then actually asking patients about things that are irrelevant or that don’t actually affect them. So we’ve now developed not only generic quality of life questionnaires that help us assess basically how somebody’s physical, functional, social and emotional wellbeing is but also we can attach to that symptom specific checklists associated with if you’re on, for example, hormone therapy or if you’re having different sorts of surgery that might affect our morbidity.

In smaller hospitals do they have support such as a psychologist?

Psychosocial care in terms of formal support within cancer centres is really patchy worldwide. Even within a given country you might find some that have recognised and integrated well – specialist breast care nurses, psychologists or liaison psychiatrists, social workers, sexual counsellors, a whole plethora, a range of different support personnel who can help patients deal with disease and treatment. But that’s not true of everywhere and now that we’ve actually got an evidence base demonstrating the value that these types of allied professions actually can deliver, it’s time that we implemented those.

How can we improve care in smaller hospitals?

One has to acknowledge that many countries do have problems with resources to even pay for modern treatments, let alone pay for all the other support services that can help patients deal with disease and treatment. One has to work with what one’s got and continue to argue all the time for more resources. But nurses can achieve quite a lot but they’ve got lots of other nursing type things to do as well as counselling, being information givers, all these other sorts of things. That might be too much for one individual who is already pressed and stressed with lots of other things to do.

I think that we have, though, got some advantages over the last few years with internet resources and also the sterling work done by breast cancer charities. Worldwide these people do an amazing job in propping up, if you like, sometimes some the inadequacies of formal service provision that exists. It’s not good enough but we need to continue to demonstrate through well designed studies the benefits of having all these other resources to help our patients.