Evaluation of a Psycho-educational intervention for patients with Advanced Cancer who have Cachexia and their lay Carers (EPACaCC)
Advanced Cancer, Wasting Syndrome, Cachexia, Psychosocial Impact, Psychological Impact and Intervention
Up to 80% of people with a diagnosis of advanced cancer suffer from a dramatic loss of fat and muscle tissue. This devastating wasting syndrome or cachexia affects people biologically, psychologically and socially and has a profound impact on their lay carers. A lay care is an unpaid carer who might be a partner, family member, friend or neighbour. At present, there are no pharmacological interventions to address cachexia. Also, there are no standardised supportive healthcare interventions in current practice that target the psychosocial impact of this extreme wasting syndrome. The psychological impact of the symptoms include distress, anxiety and a sense of helplessness, whereas the main social impact of the symptoms includes conflict over food with lay carers.
This study set out to develop, implement and evaluate an educational intervention aimed at improving the psychological well-being of: 1) people in advanced stages of cancer who have unintentional weight loss and 2) their lay carers. The project, a mixed methods study, focused on three key stages: (1) Developing an intervention for cachexia management. The intervention was based on best available evidence and was delivered via DVD (2) Implementing the psycho-educational intervention and (3) Evaluating the intervention.
The research team designed the DVD content of the intervention based on previous research and in collaboration with previous carers who have looked after someone with cachexia. The study team also worked closely with clinical colleagues. Both our clinical colleagues and past carers helped decide what content went into the intervention. The study asked both of these groups for feedback on the intervention once it was developed. Findings confirmed that the intervention would be very useful to help explain what cachexia is and how to manage it. In particular past carers thought it would have been very helpful for them to have this information when they were caring for their loved one. When the health care professionals were asked about the intervention it became apparent that they also found the intervention useful and it helped raise awareness of what cachexia is and how to manage it.
This result matters because cachexia is known to be under-recognised and under-diagnosed in clinical areas. Patients and families have previously told the research team that sometimes cachexia was met with silence when the signs and symptoms were reported by patients and their carers to healthcare professionals. Also, professionals have previously told us they don’t know how to best deal with refectory cachexia.
From these results we can see that the intervention developed may be very useful in educating health care professionals about how to recognise, understand and manage refectory cachexia and in future research we would like to use this intervention as an education tool to assess if it impacts on clinical practice. We hope that if it does it will help improve how cachexia is managed in clinical practice and in turn help patients with cachexia and their family carers cope with cachexia and its impact. The research leads have also worked with senior cancer colleagues in the Mayo Clinic in America and St Vincent’s Hospital in Australia and collected information from healthcare professionals about how cachexia is managed. This information will help ascertain if the intervention would be useful internationally to have a positive impact on the management of refractory cancer cachexia.
Study carried out: October 2013 – October 2016
Prof Joanne Reid, School of Nursing and Midwifery, Queen’s University Belfast (QUB) and Prof Sam Porter, Bournemouth University
Dr Peter O’Halloran, Dr David Scott, and Dr Olinda Santin, School of Nursing and Midwifery, QUB, Dr Christopher Cardwell, School of Medicine, Dentistry and Biomedical Sciences, QUB, Prof George Kernohan, Ulster University (UU), and Dr Joan Regan Marie Curie Hospice
This research was funded by the Health Research Board (HRB) and All Ireland Institute of Hospice and Palliative Care (AIIHPC) through its Palliative Care Research Network (PCRN).
Published Paper: Reid J., Scott D., Santin O., Cardwell C.R., Donnelly M., Kernohan W.G., O’Halloran P.D., Regan J. & Porter S. (2014) Evaluation of a Psychoeducational intervention for patients with Advanced Cancer who have Cachexia and their lay Carers (EPACaCC): study protocol. Journal of Advanced Nursing 70(5), 1174–1183. doi: 10.1111/jan.12268