Evaluation of a Psychoeducational intervention for patients with Advanced Cancer who have Cachexia and their lay Carers (EPACaCC): study protocol

Joanne Reid, David Scott, Olinda Santin, Chris R. Cardwell, Michael Donnelly, George Kernohan, Peter Dominic O'Halloran, Joan Regan, Sam Porter

Research output: Contribution to journalArticlepeer-review

11 Citations (Scopus)


AimTo evaluate a psychoeducational intervention for patients with advanced cancer who have cachexia and their lay carers.BackgroundCachexia is a frequent and devastating syndrome of advanced cancer. It has an impact on patients biologically, psychologically and socially and has profound impact on their lay carers. Prior research has predominately focused on the biological components of cachexia and associated potential treatment modalities. At present, there is no standardized supportive healthcare intervention in current practice that targets the psychosocial impact of this syndrome.DesignA pragmatic multicentre randomized controlled trial.MethodsPatient/carer dyads (n = 200) will be recruited into a randomized controlled trial of a DVD intervention for cachexia management. The sample will be recruited from two urban hospices in the UK. The primary outcome measure will be the General Health Questionnaire-12. Additional questionnaires focusing on distress, readiness to give care and coping skills will be used as secondary outcome measures. In addition, lay carers in the intervention group will be asked to participate in semi-structured interviews following the death of their loved one. Both Office for Research Ethics Committee approval and local governance approval at both hospices have been obtained as of February 2013.DiscussionThis is the first time that a psychoeducational DVD has been tested in a randomized controlled trial in this population. Dissemination of findings will make a significant contribution to international knowledge and understanding in this area. Findings will inform education, practice and policy.
Original languageEnglish
JournalJournal of Advanced Nursing
Publication statusPublished (in print/issue) - 10 Oct 2013

Bibliographical note

Reference text: Archbold P.G., Stewart B.J., Greenlick M.R. & Harvath T. (1990) Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing & Health 13, 375–384.
Direct Link:AbstractPDF(780K)ReferencesWeb of Science® Times Cited: 178
Baik O.M. & Adams K.B. (2011) Improving the well-being of couples facing Cancer: a review of couple-based psychosocial interventions. Journal of Marital and Family Therapy 37, 250–266.
Direct Link:AbstractFull Article (HTML)PDF(224K)ReferencesWeb of Science® Times Cited: 10
Bruera E. & MacDonald R.N. (1998) Nutrition in cancer patients: an update and review of our experience. Issues in symptom control. 3. J Pain Symptom Manage 3, 133–140.
CrossRefCarver C.S., Scheier M.F. & Weintraub J.K. (1989) Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology 56, 267–283.
CrossRef,PubMed,CASCrowley C., Harre R. & Tagg C. (2002) Qualitative research and computing: Methodological issues and practices in using QSR NVivo and NUD*IST. International Journal of Social Research Methodology 5(3), 193–197.
CrossRefDewey A. & Dean T. (2007b) Assessment and monitoring of nutritional status in patients with advanced cancer: Part I. International Journal of Palliative Nursing 13, 258–265.
PubMedDewey A., Baughan C., Dean T.P., Higgins B. & Johnson I. (2007a) Eicosapentaenoic acid (EPA, an omega-3 fatty acid from fish oils) for the treatment of cancer cachexia. Cochrane Database of Systematic Reviews Issue 1, CD004597. doi:10.1002/14651858.CD004597.pub2.
CrossRef,Web of Science® Times Cited: 38Fearon K., Strasser F., Anker S.D., Bosaeus I., Bruera E., Fainsinger R.L., Jatoi A., Loprinzi C., MacDonald N., Mantovani G., Davis M., Muscaritoli M., Ottery F., Radbruch L., Ravasco P., Walsh D., Wilcock A., Kaasa S. & Baracos V.E. (2011) Definition and classification of cancer cachexia: an international consensus. Lancet Oncology 12, 489–495.
CrossRef,Web of Science® Times Cited: 143Firth P. (2005) Patients and their families. In Communication in Cancer Care (Stiefel F., ed.), Springer-Verlag, Berlin, pp. 61–72.

Gessler S., Low J., Daniells E., Williams R., Brough V., Tookman A. & Jones L. (2008) Screening for distress in cancer patients: is the distress thermometer a valid measure in the UK and does it measure change over time? A prospective validation Study. Psycho-Oncology 17, 538–547.
Direct Link:AbstractPDF(478K)ReferencesWeb of Science® Times Cited: 34
Goldberg D. & Williams P. (1988) A User's Guide to the General Health Questionnaire. NFER-Nelson, London.

Gordon J.N., Trebble T.M., Ellis R.D., Duncan H.D., Johns T. & Goggin P.M. (2005) Thalidomide in the treatment of cancer cachexia: a randomised placebo controlled trial. Gut 54, 540–545.
CrossRef,PubMed,CAS,Web of Science® Times Cited: 95Hopkinson J.B., Fenlon D.R., Okamoto I., Wright D.N., Scott I., Addington-Hall J.M. & Foster C. (2010) cluster-randomized, exploratory trial of a psychosocial intervention for weight- and eating-related distress in people with advanced cancer. Journal of Pain and Symptom Management 40(5), 684–695.
CrossRef,Web of Science® Times Cited: 4Hopkinson J.B., Brown J.C., Okamoto I. & Addington-Hall J.M. (2012) The effectiveness of patient-family carer (couple) intervention for the management of symptoms and other health-related problems in people affected by cancer: A systematic literature search and narrative review. Journal of Pain and Symptom Management 43(1), 111–142.
CrossRef,Web of Science® Times Cited: 4Hughes N. & Neal R.D. (2000) Adults with terminal illness: A literature review of their needs and wishes for food. Journal of Advanced Nursing 32(5), 1101–1107.
Direct Link:AbstractFull Article (HTML)PDF(71K)ReferencesWeb of Science® Times Cited: 15
Lazarus R. & Folkman S. (1984) Stress, Appraisal and Coping. Springer Publishing Co, New York.

Lincoln N.B., Yuill F., Holmes J., Drummond A.E., Constantinescu C.S., Armstrong S. & Phillips C. (2011) Evaluation of an adjustment group for people with Multiple sclerosis and low mood: a randomised controlled trial. Multiple Sclerosis 17(10), 1250–1257.
CrossRef,Web of Science® Times Cited: 6Mauri D., Tsiara A., Valachis A., Kalopita K., Tsali L., Tolis P. & Polyzos N.P. (2013) Cancer cachexia: global awareness and guidelines implementation on the web. BMJ Support Palliat Care. Retrieved from http://spcare.bmj.com/content/early/2013/01/16/bmjspcare-2012-000227.abstract-aff-1; http://spcare.bmj.com/content/early/2013/01/16/bmjspcare-2012-000227.abstract-aff-3on 15 May 2013. doi:10.1136/bmjspcare-2012-000227.
CrossRefMcClement S.E., Degner L.F. & Harlos M.S. (2004) Family responses to declining intake and weight loss in a terminally ill relative. Part I: Fighting back. Journal of Palliative Care 20(2), 93–101.
PubMed,Web of Science® Times Cited: 22Millar C., Reid J. & Porter S. (2013) Refractory cachexia and truth-telling about terminal prognosis: a qualitative study. European Journal of Cancer Care (England) 22(3), 326–333.
Direct Link:AbstractFull Article (HTML)PDF(81K)ReferencesWeb of Science®
Miles M.B. & Huberman A.M. (1994) Qualitative Data Analysis: An Expanded Sourcebook, 2nd edn. Sage, Thousand Oaks, CA.

Munhall P. (2011) Nursing Research: A Qualitative Perspective, 5th edn. Ones and Bartlett Learning, Burlington, MA.

Murphy K.T. & Lynch G.S. (2009) Update on emerging drugs for cancer cachexia. Expert Opinion on Emerging Drugs 14, 619–632.
CrossRef,CAS,Web of Science® Times Cited: 20Oberholzer R., Hopkinson J.B., Baumann K., Omlin A., Kaasa S., Fearon K.C. & Strasser F. (2012) Psychosocial effects of cancer cachexia: a systematic literature search and qualitative analysis. Journal of Pain and Symptom Management 46(1), 77–95.
CrossRef,Web of Science® Times Cited: 1Porter S., Millar C. & Reid J. (2012) Cancer cachexia care: the contribution of qualitative research to evidence-based practice. Cancer Nursing 35(6), E30–E38.
CrossRef,Web of Science® Times Cited: 1Quek K.F., Low W.Y., Razack A.H. & Loh C.S. (2001) Reliability and validity of the General Health Questionnaire (GHQ-12) among urological patients: a Malaysian study. Psychiatry and Clinical Neurosciences 55(5), 509–513.
Direct Link:AbstractFull Article (HTML)PDF(50K)ReferencesWeb of Science® Times Cited: 13
Radbruch L., Elsner F., Trottenberg P., Strasser F. & Fearon K. (2010) Clinical Practice Guidelines on Cancer Cachexia in Advanced Cancer Patients. Department of Palliative Medicinen/European Palliative Care Research Collaborative, Aachen.

Ramos E.J.B., Sukuzi S., Marks D., Inui A., Asakawa A. & Meguid M.M. (2004) Cancer anorexia-cachexia syndrome. Current Opinion Clinical Nutrition and Metabolic Care 7, 427–434.
CrossRef,PubMed,CAS,Web of Science® Times Cited: 77Reid J. (2009) Conducting qualitative research with advanced cancer patients and their families: ethical considerations. International Journal of Palliative Nursing 15(1), 30–33.
PubMedReid J., McKenna H., Fitzsimons D. & McCance T. (2009) Fighting over food: patient and family understanding of cancer cachexia. Oncology Nursing Forum 36(4), 439–445.
CrossRef,PubMed,Web of Science® Times Cited: 9Reid J., McKenna H., Fitzsimons D. & McCance T. (2010) An exploration of the experience of cancer cachexia: what patients and their families want from health care professionals. European Journal of Cancer Care 19(5), 682–689.
Direct Link:AbstractFull Article (HTML)PDF(90K)ReferencesWeb of Science® Times Cited: 9
Reid J., Mills M., Cantwell M., Cardwell C.R., Murray L.J. & Donnelly M. (2012) Thalidomide for managing cancer cachexia. Cochrane Database Systematic Review. doi:10.1002/14651858.CD008664.pub2.
CrossRef,Web of Science®Reid J., Hughes C., Parsons C., Murray L. & Cantwell M. (2013) Non-steroidal anti-inflammatory drugs for the treatment of cancer cachexia: a systematic review. Palliative Medicine 27(4), 295–303.
CrossRef,CAS,Web of Science®Ruiz Garcia V., López-Briz E., Carbonell Sanchis R., Gonzalvez Perales J.L. & Bort-Marti S. (2013) Megestrol acetate for treatment of anorexia-cachexia syndrome. Cochrane Database Systematic Review. doi: 10.1002/14651858.CD0 04310.pub3
CrossRef,Web of Science®Tisdale M.J. (2002) Cachexia in cancer patients. Nature Reviews Cancer 2, 862–871.
CrossRef,PubMed,CAS,Web of Science® Times Cited: 301Tisdale M.J. (2009) Mechanisms of cancer cachexia. Physiological Reviews 89, 381–410.
CrossRef,PubMed,CAS,Web of Science® Times Cited: 193


Dive into the research topics of 'Evaluation of a Psychoeducational intervention for patients with Advanced Cancer who have Cachexia and their lay Carers (EPACaCC): study protocol'. Together they form a unique fingerprint.

Cite this