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Patients' Stories Provide Insights

Miaskowski, Christine PhD, RN, FAAN

doi: 10.1097/NCC.0b013e31822389f6

Author Affiliation: Department of Physiological Nursing, University of California, San Francisco.

Correspondence: Christine Miaskowski, PhD, RN, FAAN, Department of Physiological Nursing, University of California, 2 Koret Way, Box 0610 San Francisco, CA 94143-0610 (

The author has no conflicts of interest to disclose.

My first intervention study focused on testing the efficacy of a psychoeducational intervention, called the PRO-SELF Pain Control Program compared with standard care, in improving pain management in oncology patients with pain from bone metastasis.1-3 One of the major critiques when the grant was reviewed initially was that we had not identified a method to monitor the fidelity of the intervention (ie, that the nurses who worked with the standard care group did not intervene on pain management and that the nurses who worked with the PRO-SELF group followed the intervention protocol). The approach that we decided to use to respond to this critique was to tape record all of the conversations with the patients and the research nurses. We noted in the resubmission of the grant application that we would listen to the tapes on a regular basis and monitor the fidelity of our intervention. This seemed like a very reasonable and straightforward approach to maintain the fidelity of our intervention, and we viewed this approach as a way to provide the research nurses, who were delivering the PRO-SELF Program, with feedback on the effectiveness of the interventions they were using with their patients.

One of the biggest surprises we had-as we listened to the tape recordings of these clinical interactions-was the richness of the dialogue between the patients and the nurses in terms of highlighting the struggles patients were having on a daily basis with implementing effective cancer pain management regimens at home. We were enthralled with listening to each story unfold in front of us. It became clear to my research team-who had expertise in quantitative methods-that we needed to collaborate with a colleague who had expertise in qualitative methods. We contacted Dr Karen Schumacher and asked her to join our research team. We were fortunate to obtain funding to conduct qualitative analyses of these tape-recorded interactions between the patients and the research nurses.

Dr Schumacher et al4 began a systematic analysis of these tape-recorded interactions that were collected within the context of a randomized clinical trial. These analyses provided us with insights into oncology patients' and their family caregivers' difficulties dealing with cancer pain on a daily basis. Of note, we never would have obtained any of these insights from our questionnaire data. In a beautifully written article, Dr Schumacher et al5 captured the voices of our patients as they shared with the research nurses the challenges associated with cancer pain management. These challenges are not on the list of routine questions that oncology nurses ask as part of a comprehensive pain assessment in the oncology clinic. For example, how many of us ask oncology patients to provide information on challenges with filling a prescription at the pharmacy? How many of us take the time to determine if patients are having difficulty cognitively processing the information that we give to them about pain management? How many of us focus on a systematic evaluation of the impact of other symptoms associated with cancer and its treatment on the patient's ability to manage their pain at home?

These problems that patients faced on a daily basis would never have been uncovered if we "stuck" with an evaluation of our questionnaire booklets and diary information. The voices of our patients would never have been heard if we had not included an analysis of these clinical interactions between the patients and the research nurses in our study. The most exciting and important part of these analyses for me was that they provided directions for both clinical practice and research-related activities. The difficulties that patients face on an ongoing basis need to be assessed by oncology nurses, and plans implemented to assist patients to overcome these difficulties in real time. This work demonstrated for me that effective cancer pain management is more than an evaluation of pain intensity scores and medication intake. Effective pain management requires that oncology patients be allowed to tell their "pain management stories" particularly in terms of what works and what does not work for them on a daily basis. These conversations between patients and oncology nurses form the foundation of new strategies to improve pain management.

An equally important insight for me as a nurse scientist is that intervention studies need to use a mixed-methods approach. As scientists, we need to listen to the challenges and difficulties that oncology patients face in managing a particular symptom as well as in implementing the various components of our symptom management interventions. The insights gained from the first study of the PRO-SELF Pain Control Program became the foundation for our ongoing trial that is evaluating 2 different doses of a psychoeducational intervention to improve cancer pain management. All of the difficulties that patients enumerated in our first study were incorporated into our initial patient assessment. In our ongoing study, the nurses perform a systematic assessment of these difficulties and challenges at the initial intervention visit. By uncovering specific challenges at the first visit, the research nurses can assist the patients to design strategies to overcome these difficulties. Hopefully, this rapid and focused assessment will increase the efficacy of the PRO-SELF PLUS intervention. Because we are doing qualitative analyses of the interactions between the patients and the intervention nurses, we will gain new insights, through listening to the patients' voices, in how to improve cancer pain management.

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1. West CM, Dodd MJ, Paul SM, et al. The PRO-SELF(c): Pain Control Program-an effective approach for cancer pain management. Oncol Nurs Forum. 2003;30(1):65-73.
2. Kim JE, Dodd M, West C, et al. The PRO-SELF Pain Control Program improves patients' knowledge of cancer pain management. Oncol Nurs Forum. 2004;31(6):1137-1143.
3. Miaskowski C, Dodd M, West C, et al. Randomized clinical trial of the effectiveness of a self-care intervention to improve cancer pain management. J Clin Oncol. 2004;22(9):1713-1720.
4. Schumacher KL, Koresawa S, West C, et al. Qualitative research contribution to a randomized clinical trial. Res Nurs Health. 2005;28(3):268-280.
5. Schumacher KL, Koresawa S, West C, et al. Putting cancer pain management regimens into practice at home. J Pain Symptom Manage. 2002;23(5):369-382.
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