Rising to the Challenge of Patient Reported Outcomes

June 9th, 2016 in Hot Topics

Sally Thorne

Author: Sally Thorne, RN, PhD, FAAN, FCAHS 

Affiliations: University of British Columbia School of Nursing

Cancer nurses have a strong commitment to the idea of documenting, interpreting and making use of that which patients report about their own cancer experiences and outcomes. As a consequence, many have taken up qualitative methods in an attempt to shed light on what it is for patients to live with diagnosis, treatment, and survivorship, to engage with cancer care systems, and to wrestle with the social and psychological implications of this disease. Historically, nurses drew directly upon social science methods (such as phenomenology, grounded theory, ethnography) for such work, but increasingly came to realise that such methods were designed more toward building theory than generating the kinds of useful knowledge that nurses need to inform practice.

Over the past three decades, I have been involved with figuring out how the great technique that was invented for social theorizing can be extracted, adapted and reworked to better match the real questions that nurses need to ask. For example, rather than assuming there is a singular dominant experience in any context, nurses will always expect important human variation. In fact, alerting the clinical imagination toward the detection and interpretation of that variation is a fundamental attribute of expert clinical practice. So our research approaches have to be applied rather than just theoretical in order for the knowledge we produce to shape the disciplinary need.

In the early days of qualitative research in nursing, we assumed that neophyte researchers (such as clinicians and graduate students) were best served by following a methodological rulebook. Now we understand that the core foundational ideas of nursing provide a great deal of direction for the “detective work” that constitutes a great qualitative study. We are freeing up nurse researchers to position their disciplinary knowledge needs and professional audiences front and centre in their thinking as they work through study design. Using nursing logic, they can build an accessible and credible line of reasoning from their research question through to its answer. An example from our previous work is a study of patient perceptions of poor communication, considered from the perspective of what we in the care system might actually do to prevent it.[1]

I have been honoured to be part of this ‘movement’ in emancipating qualitative methodology so that it becomes an accessible resource and tool in the hands of thoughtful practicing nurses, and not the exclusive privilege of those with elite academic training. Every day I encounter amazing nurses generating powerful insights with application at the point of care, challenging the status quo assumptions of our care systems on the basis of experiential knowledge they glean from the cancer patients they study, and filling in the gaps in our understanding that population-based (quantitative) evidence leaves behind. In the newly published second edition of my methods text[i], I am demonstrating how nurses build knowledge translation right into their designs, rather than considering it an afterthought. This is not something I ‘invented;’ rather, it is an approach to knowledge generation that I have observed throughout my career as the classic inquiry style of great nurse thinkers. And there are so many from whom to learn!

Cover Photo

[1] Thorne, S., Oliffe, J.L., Stajduhar, K. I., Oglov, V., Kim-Sing, C., Hislop, T.G. (2013). Poor communication in cancer care. Cancer Nursing, 36(6), 445-453

[i] Thorne, S. (2016). Interpretive description: Qualitative research for applied practice. New York & London: Routledge.


New Resources to Advance Palliative Care

May 12th, 2016 in Hot Topics

Authors: Jeanne M. Erickson, RN, PhD, AOCN

Affiliations: Assistant Professor, University of Wisconsin-Milwaukee College of Nursing

Oncology nurses continue to make progress to improve care for patients with advanced cancer at the end of life. An important group behind this progress is the American Association of Colleges of Nursing (AACN), who in 1997 developed recommendations for educating undergraduate nursing students about end-of-life care in Peaceful Death:  Recommended Competencies and Curricular Guidelines for End-of-life Nursing Care.1  AACN also developed the End-of-Life Nursing Education Consortium (ELNEC), a project to train health care providers and improve end-of-life care for patients in their communities. To date, the ELNEC project has reached over 550,000 health care providers in 88 countries.2

Today, nearly 20 years later, the emphasis is moving to educate nursing students and nurses about palliative care and to distinguish palliative care from end-of-life care.  Palliative care is defined as the management of symptoms and side effects in patients who have been diagnosed with a serious or life-threatening disease or condition, such as cancer.  A palliative care approach emphasizes that symptom relief needs to begin at the time of diagnosis and continue throughout the course of the disease.  Palliative care prioritizes the patient’s comfort and quality of life and should not be emphasized only at the end of life when cure or control of disease is no longer possible.

The AACN has again taken a lead in this educational endeavor and has developed recommendations to educate nursing students about palliative care concepts.  These recommendations for palliative care competencies, Competencies and Recommendations for Educating Undergraduate Nursing Students:  Preparing Nurses to Care for the Seriously Ill and Their Families, are built on the original work of the AACN related to end-of-life care and emerged from a roundtable of palliative care experts held in the fall of 2015.3  This latest AACN document suggests content and possible placement for the content in undergraduate nursing courses.  AACN also plans to make a series of modules with condensed ELNEC content available for nurse educators in 2017 to promote integration of palliative care content into schools of nursing.

The International Society of Nurses of Nurses in Cancer Care (ISNCC) also recognizes and supports the central role of oncology nurses in the delivery of palliative care.  In October 2015, ISNCC approved a Palliative Care Position Statement that recommends palliative care as an educational priority for health care providers, especially for the global workforce of nurses.4   This Statement also acknowledges the special needs of local and global communities with inadequate resources, where patients may suffer due to a lack of medications and other interventions to relieve distressing symptoms.

It is now up to us as oncology nurses and nurse educators to advance the competencies of current and future nurses to deliver palliative care to all patients throughout their course of cancer treatment, especially those patients who are vulnerable due to a lack of resources.   We can promote these recommendations for palliative care education by sharing them with our colleagues at affiliated schools of nursing.  As educators, we can work to incorporate this content as we teach in clinical and classroom settings and mentor nurses to become leaders in the field of palliative care.  As clinicians and administrators, we can ensure that we follow current, evidence-based palliative care interventions that prioritize the comfort of our patients and their families. As researchers, we can work to improve the science of symptom management to address the complex symptoms of our patients. As a global nursing workforce, we can promote the delivery of palliative care through our practice, education, research, and service.



  1. American Association of College of Nursing. Peaceful Death:  Recommended Competencies and Curricular Guidelines for End-of-life Nursing Care.  (1997).  Accessed March 26, 2016 at http://www.aacn.nche.edu/elnec/publications/peaceful-death
  2. American Association of College of Nursing. ELNEC Fact Sheet.  Accessed March 26, 2016 at http://www.aacn.nche.edu/elnec/about/fact-sheet
  3. American Association of College of Nursing. CARES:  Competencies And Recommendations for Educating Undergraduate Nursing Students.   Accessed March 26, 2016 at http://www.aacn.nche.edu/elnec/New-Palliative-Care-Competencies.pdf
  4. International Society of Nurses in Cancer Care. ISNCC Palliative Care Position Statement.  Accessed April 2, 2016 at http://c.ymcdn.com/sites/www.isncc.org/resource/resmgr/Position_Statements/ISNCC_Palliative_Care_Positi.pdf

Prompt Antibiotics for Neutropenic Fever: No More Excuse

December 22nd, 2015 in Hot Topics

by Wai Man Ling, Hong Kong East Cluster, Hong Kong, China.  ISNCC Communications Committee Member.

A 51-year-old leukaemia patient died of post chemotherapy septicaemia after a 5-hour delay in antibiotics treatment in Hong Kong 4 years ago. The incident has drawn the attention in the public and the healthcare community again after the verdict of Coroner’s Court in November 2015 (Lo, 2015). The coroner attributed the tragedy to a series of unfortunate mistakes, especially the multiple delays in the antibiotics treatment when the patient attended the two Accident and Emergency Departments (AEDs) for fever. She continued to urge the Hospital Authority (HA) of Hong Kong to review the existing clinical practice. Emergency protocol should be in place and there should be adequate instructions to the patients and the family members prior to post chemotherapy discharge (Lau, 2015).

Neutropenic fever is a known oncological emergency. Its mortality can be largely reduced by prompt and appropriate responses from the attending healthcare professionals. I believe that this unfortunate but real case can once again illustrate the risk vividly and further boost our vigilance. In response to the incident, the HA is now co-ordinating a number of remedial actions in the local public hospitals. Management guidelines will be developed. Emergency antibiotics kit is being considered to install in all the Accident and Emergency, Oncology, and Haematology Departments to facilitate a timely initiation of antibiotics treatment.

Moreover, concerns from the external accreditation body have given extra momentum to the move. Just take my hospital as an example, the external surveyors scrutinized the policies and performance of my Department in this area during their visit last year. Thereafter, we had implemented a number of improvement measures. We conducted a retrospective baseline audit on the door-to-needle (DTN) time for antibiotics treatment for the period of 2013-14. Similar to the findings of other local audits, our performance fell short of the international recommendations in terms of the mean DTN time (Chan, Wong, & Wu, 2015). Then, we developed the new clinical management guidelines, and collaborated with our AED and Pharmacy to establish a new workflow. Currently, we are conducting a post audit to review the effectiveness of our new practice.

On the other hand, our experience has underlined some pivotal roles played by the oncology nurses in enhancing the service. Firstly, we help to design the emergency protocol and the Chemotherapy Alert Card, and incorporate this new information in the pre-chemotherapy education for patients. Secondly, we liaise with the various Departments to establish an agreed workflow. We have then briefed the staff members on this workflow, and also educated the doctors and nurses of our AED on the use of different types of central catheters for blood culture and antibiotics treatment. Thirdly, we help to collect patient data for the post clinical audit.

Through this sharing, I would like to restate the importance of the prompt management of post chemotherapy neutropenic fever, and the significant contributions that oncology nurses can make in this area.


The new Chemotherapy Alert Card for the patients in our Department

The new Chemotherapy Alert Card for the patients in our Department


Chan, S. H. O., Wong, K. M. I., & Wu, Y. G. P. (2015). Clinical Audit on Initial Management of Neutropenic Fever Patients. Unpublished manuscript, Department of Clinical Oncology, Pamela Youde Nethersole Eastern Hospital, Hong Kong.

Lau, C. (2015, November 19). ‘A series of unfortunate events’: Hong Kong coroner rules cab driver whose hospital treatment was delayed died of natural cause. South China Morning Post. Retrieved from http://www.scmp.com/news/hong-kong/law-crime/article/1880148/series-unfortunate-events-hong-kong-coroner-rules-cab

Lo, K. (2015, November 19). Natural causes ruling after leukemia delays. The Standard. Retrieved from http://www.thestandard.com.hk/news_print.asp?art_id=163364&sid=45601959

Oral Anti-Cancer Agent Medication Adherence

August 25th, 2015 in Hot Topics

by Sandra L. Spoelstra, Michigan State University College of Nursing, East Lansing, United States.

Patients with cancer miss as much as one third of the prescribed doses of oral anti-cancer agents required for treatment of their disease. Even more disconcerting is that within the next three years, 25% of cancer treatment will be delivered in pill form. This shift in the treatment paradigm will result in increased care in the home, placing greater responsibility on patients. Barriers to oral agent adherence for patients include no or limited coverage for the medication, complex dosing regimens, difficulty obtaining the prescription, running out of the prescription, forgetting to take the pills, skipping or stopping because they believed the medication was not working or because it created symptoms from side effects, and not seeking help from others. Often, the more adherent patients are to oral chemotherapy agents, the more likely they are to experience symptoms. Patients prescribed oral agents have indicated titrating doses as they were unable to tolerate symptoms occurring as a side effect of the cancer treatment. Thus, prompt and aggressive management of symptoms becomes vital to managing adherence at home. Furthermore, pharmacy literature suggests a narrow therapeutic index for cancer therapy, increasing the importance of oral agent adherence, as non-adherence may affect time to disease progression and mortality. The therapeutic outcome for patients taking oral agents depends heavily on the ability of patients to adhere to the prescribed regimen. Healthcare research has not conclusively identified effective interventions to promote medication adherence. Chemotherapy classes are a common part of care for patients receiving IV treatment. However, training for patients on oral agents is underdeveloped, and needs to include adherence, monitoring and reporting of symptoms from side effects and toxicities, coordination of changes in dosing if altered or stopped, and management of insurance coverage and drug delivery. Oncology nurses must take the lead in structuring care settings that promote patient behavior to attain optimal adherence. Oncology nurses can help patients and their families understand what they are responsible for in many ways. The number of cancer patients who receive oral agents in pill form is increasing, and oncology nurses can lead the way enabling patients to adhere to and complete their cancer treatment.


Bassan, F., Peter, F., Houbre, B., Brennstuhl, M. J., Costantini, M., Speyer, E., & Tarquinio, C. (2014). Adherence to oral antineoplastic agents by cancer patients: Definition and literature review. European Journal of Cancer Care, 23, 22–35. doi:10.1111/ecc.12124

Lichtman, S. M., & Boparai, M. K. (2008). Anticancer drug therapy in the older cancer patient: pharmacology and polypharmacy. Current Treatment Options in Oncology, 9, 191–203. doi:10.1007/s11864-008-0060-6

Soria, J. C., Blay, J. Y., Spano, J. P., Pivot, X., Coscas, Y., & Khayat, D. (2011). Added value of molecular targeted agents in oncology. Annals of Oncology, 22, 1703–1716. doi: 10.1093/annonc/mdq675

Spoelstra, S. L., Given, B. A., Given, C. W., Grant, M., Sikorskii, A., You, M., & Decker, V. (2013a). An intervention to improve adherence and management of symptoms for patients prescribed oral chemotherapy agents: An exploratory study. Cancer Nursing, 36, 18–28.

Spoelstra, S. L., Given, B. A., Given, C. W., Grant, M., Sikorskii, A., You, M., & Decker, V. (2013b). Issues related to overadherence to oral chemotherapy or targeted agents. Clinical Journal of Oncology Nursing, 17, 604–609. doi:10.1188/13.CJON.17-06AP

Spoelstra, S. L., & Given, C. W. (2011). Assessment and measurement of adherence to oral antineoplastic agents. Seminars in Oncology Nursing, 27, 116–132. doi:10.1016/j.soncn.2011.02.004

Weingart, S. N., Brown, E., Bach, P. B., Eng, K., Johnson, S. A., Kuzel, T. M., . . . Walters, R. S. (2008). NCCN Task Force Report: Oral chemotherapy. Journal of the National Comprehensive Cancer Network: JNCCN, 6, S1–S14.

Nursing and the impact of non-communicable diseases: Are you ready to make a difference?

May 26th, 2015 in Hot Topics

by Catherine Johnson, Calvary Mater Newcastle, Newcastle, Australia.  ISNCC Finance and Audit Committee Member, ISNCC Corporate and Philanthropic Committee Member, ISNCC Knowledge Development and Dissemination Committee Member, ISNCC Communications Committee Member, ISNCC Member Development Committee Member.

Globally non-communicable diseases (NCDs) which include cancer, cardiovascular diseases, diabetes and chronic respiratory diseases make the largest contribution to mortality; approximately 60% (35 million) of all deaths and have the greatest impact in low and middle income countries (28 million deaths) (1).  Most of these deaths are from preventable causes: tobacco use, unhealthy diets, alcohol consumption and physical inactivity. In 2010 the International Council of Nurses (ICN) identified that nurses are well positioned to lead NCD prevention, care and treatment. The ICN have developed a website (www.growyourwellness.com) that has a variety of tool and resources to help nurses lead wellness including prevention and health promotion tools, health assessments, policy and advocacy and also a section on nurses’ own health.

The International Society of Nurses in Cancer Care (ISNCC) has strong leaders in the prevention and control of NCDs. Stella Bialous, current ISNCC president, with her colleague Linda Sarna have been advocates of tobacco cessation and the important role of nurses in helping smokers quit. They highlight tobacco cessation is incredibly important as it can lead to all four of the NCDs and have actively pursued capacity building of nurses in tobacco control. Of note, the ISNCC updated tobacco position statement was released in July 2014 and can be found at http://www.isncc.org/?page=Position_Statements. The ISNCC tobacco taskforce has been hosted in Eastern Europe (2012) and in China (2014) to increase nurses’ delivery of tobacco dependence treatment.

In 2014, at the World Cancer Leaders’ Summit, Sanchia Aranda, Past ISNCC president and current president of the Union for International Cancer Control, advocated for prevention strategies including higher tobacco taxes; implementation of prevention packages to improve diets and increase physical activity; development of effective workplace health promotion programs; and widespread vaccination programs, particularly in low-resource settings where routine screening and treatment services may not be available. Professor Aranda also spoke of the need for solutions that are accessible and affordable that deliver a return on investments for governments, particularly low and middle income countries where the burden of disease is greater and health services are not as well developed or resourced.

Nurses can play key roles in prevention and control of NCDs through key areas of policy, advocacy, research, education and clinical practice.

Do you feel prepared to contribute the prevention and control of NCDs?

Do you have the knowledge and skills to help patients, carers and their families modify their unhealthy behaviours to reduce their risk of developing one of the four key NCDs?

Will you be part of the solution?

  1. http://www.ncdalliance.org/globalepidemic