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March 2014, Volume 41, Number 2
Letters to the Editor
Anne Katz, RN, PhD—Editor
Comment on “Healthcare Professionals’ Response to Cachexia in Advanced Cancer: A Qualitative Study”
I read with great interest the findings of Millar, Reid, and Porter (2013) in their study of healthcare professionals’ responses to cachexia in advanced cancer, as they strongly echoed my experience working on a project to address the problems they identified.
Millar et al. (2013) rightly highlighted a lack of knowledge, a culture of avoidance, and a lack of resources as the main barriers to the effective management of cachexia. This is consistent with previous research findings (Churm, Andrew, Holden, Hildreth, & Hawkins, 2009) and calls for a sustainable and feasible intervention that can address these issues.
I was involved in a research program funded by Macmillan Cancer Support that used a standardized holistic approach to break through these barriers and address the far-reaching consequences of living with cachexia from cancer (Andrew, Waterfield, Hildreth, Kirkpatrick, & Hawkins, 2009). A quantitative study by Andrew et al. (2009) showed a marked and significant improvement in the symptoms and overall experience of patients taking part. This led to the publication and dissemination of the Macmillan Durham Cachexia Pack (www.learnzone.org.uk). The pack includes simple guidance and tools to support and empower professionals, patients, and informal caregivers.
A linked qualitative project used semistructured interviews of patients who had completed the Quantifying the Impact of Standardized Assessment and Symptom Management Tools (QISAM) project to ascertain their experience of cachexia and the impact of the QISAM intervention on that experience.
A common experience of patients was a struggle with the profound symptom burden and lack of control, as well as the uncertainty they faced. It seemed that taking part in the project helped them recover some sense of control. The structured approach of the QISAM intervention, which included dietary advice and medication, also seemed to be empowering. One patient said, “In a way it’s helpful to know how to sort of . . . face it. So, if I don’t feel hungry, then just little and often” (Waterfield, 2010).
The significant anxiety linked to cachexia was expressed implicitly or explicitly by most patients, and participation in the project seemed to have helped alleviate some of that anxiety. The reassurance provided by the QISAM study researcher made a big difference to many patients. One patient said, “But on the whole . . . being able to talk to someone, I think you bottle a lot up and just being able to express yourself on a one-to-one, I found helpful, very helpful. I think you get a lot of relief by being able to talk to someone and just to be reassured, I think” (Waterfield, 2010).
The findings from that qualitative study highlight the important impact that simple measures delivered in a structured and supportive way can make in such a distressing and debilitating condition.
I hope that these findings may be of use to authors such as Millar et al. (2013) as they seek to develop a psycho-educational approach to managing cachexia.
Andrew, I.M., Waterfield, K., Hildreth, A.J., Kirkpatrick, G., & Hawkins, C. (2009). Quantifying the impact of standardized assessment and symptom management tools on symptoms associated with cancer-induced anorexia cachexia syndrome. Palliative Medicine, 23, 680–688. http://dx.doi.org/10.1177/0269216309106980
Churm, D., Andrew, I.M., Holden, K., Hildreth, A.J., & Hawkins, C. (2009). A questionnaire study of the approach to the anorexia-cachexia syndrome in patients with cancer by staff in a district general hospital. Supportive Care in Cancer, 17, 503–507. http://dx.doi.org/10.1007/s00520-008-0486-1
Millar, C., Reid, J., & Porter, S. (2013). Healthcare professionals’ response to cachexia in advanced cancer: A qualitative study. Oncology Nursing Forum, 40, E393–E402. http://dx.doi.org/10.1188/13.ONF.E393-E402
Waterfield, K.E. (2010). Patients’ experiences of participation in the Durham Macmillan Cachexia Project (Unpublished master’s dissertation). Cardiff University, United Kingdom.
The authors take full responsibility for the content of the article. No financial relationships relevant to the content of this letter have been disclosed by the authors or editorial staff.
Kerry Waterfield, MBBS, MSc, MRCP, is a hospice physician at St. Clare’s Hospice in Jarrow, and Colette Hawkins, BSc, MBBS, MRCP, is a consultant in palliative medicine in the County Durham and Darlington NHS Foundation in Durham, both in the United Kingdom. Waterfield can be reached at email@example.com, with copy to editor at ONFEditor@ons.org.
ONF, 41(2), 116. http://dx.doi.org/10.1188/14.ONF.116