The Phyllis F. Cantor Center for Research in Nursing & Patient Care Services
Current Research
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Ongoing Studies
Computerized Assessment for Patients with Cancer (ESRA-C II)
Principal Investigator: Donna Berry, PhD, RN, FAAN, AOCN
Co-Investigators: Seth Wolpin, William Lober, Jesse Fann, Anthony Back, Dagmar Amtmann, Upendra Parvathaneni (University of Washington); Nigel Bush (Fred Hutchinson Cancer Research Center)
Funded by the National Institute of Nursing Reserch (R01 NR008726), this study further develops the Electronic Self-Report Assessment for Cancer (ESRA-C), a Web tool patients use to self-report symptoms and quality of life issues (SQIs), which also delivers summaries to the clinical care team. In a previous randomized trial, the ESRA-C intervention was successful in promoting patient-clinician communication and management of SQIs.
This study will test an enhanced, patient-focused intervention (ESRA-C 2) that provides patients with the following: SQI tracking and graphing; educational information about SQI prevalence, etiology, and management; and coaching on communicating SQI information to clinicians. The trial of the new patient-focused intervention (treatment arm) versus the existing clinician-focused intervention (usual care) will enroll 700 patients and 250 clinicians at Dana-Farber and Seattle Cancer Care Alliance/University of Washington Medical Center, beginning in 2009.
A Lung Cancer Symptom Assessment and Management Intervention (SAMI)
Principal Investigator: Mary Cooley, PhD, RN
Co-Investigators: Janet Abrahm, Karen Emmons, Joanne Wolfe, Donna Berry (DFCI); David Harrington (Biostatistics, DFCI); Ken Zaner, Gail Wilkes (Boston Medical Center); David Lobach, Kawamoto Kensaku (Duke University)
This study, funded by the National Cancer Institute (R01 CA125256), will develop and evaluate the usability (in phase I) and feasibility in clinical use (in phase II) of a coordinated symptom assessment and management intervention for lung cancer patients. The intervention uses patient reports of symptoms and prior adherence to treatment, standards-based clinical guidelines, and lab values to generate patient-specific recommendations for symptom management.
The intervention will be tested for its effects on patient-health care provider (HCP) communication, clinical management of symptoms, and health-related quality of life. The study will be conducted in Dana-Farber and Boston Medical Center. It will enroll 10 HCPs and 12 patients in phase I (2009), and 18 HCPs and 180 patients in phase II (2010-11).
Mindfulness in Autologous/Stem cell Transplantation to Enhance Resiliency (MASTER)
Principal Investigator: Susan Bauer-Wu, PhD, RN
Co-Investigators: Mary Cooley, PhD, RN, APNC, Ann S. LaCasce, MD (Medical Oncology)
This multi-site, randomized clinical trial (RCT) is aimed at examining the bio-behavioral effects of mindfulness meditation (MM) in cancer patients undergoing stem cell/autologous bone marrow transplantation (SCI/ABMT). A total of 270 patients will be randomized to one of three groups (1. mindfulness instruction by trained registered nurses; 2. nurse education/attention control; 3. standard care), and will be followed throughout SC/ABMT and six months after discharge from the hospital. Outcomes include psychological and physical symptoms, quality of life, cardiovascular arousal, neuro-endocrine function, and transplant-related immune outcomes. Recruitment and data collection are underway.
The Experience of Living with Metastatic Breast Cancer: Insight Gained from Women's Expressive Writing
Principle Investigator: Susan Bauer-Wu, PhD, RN
Co-Investigators: Marsha Fonteyn, PhD, RN, OCN, Peggy Vettese, PhD, RN, Diane Lancaster, PhD, RN, Ann-Marie Barron, PhD, RN, CS, Carolyn Hayes, PhD, RN, Ulrika Kreicbergs, PhD, RN,
Writing deeply about the issues and concerns of living with advanced breast cancer can be a therapeutic and cathartic process for women undergoing this experience. The content of their writing can be a source for healthcare providers and researchers to better understand the nature of the process as well as the thoughts and feelings associated with this experience. The purpose of this study was to identify and describe the content of the expressive writing texts of a group of women who were living with metastatic breast cancer.
A team of nurse scientists conducted a secondary analysis using qualitative research methods to examine the transcripts of 85 women with Stage IV breast cancer who participated in an expressive writing intervention study. The participants in the original study had given informed consent for a subsequent analysis of their expressive writing texts, which were transcribed verbatim prior to the content analysis. To help ensure intercoder reliability, the team first developed a comprehensive codebook, iteratively, by reaching consensus on the concepts identified in a set of transcripts that all team members had analyzed. The codebook that was ultimately developed contained the concepts (codes), definitions, inclusion and exclusion criteria, and exemplar text. The team then divided up the transcripts and individually conducted their analysis, using the codebook as a guide. Periodic team meetings were held to discuss and resolve any issues associated with the codebook and to identify and describe any new concepts that needed to be added. The team used the QRS® NVivo software program to maintain an electronic database of the coded transcripts.
A total of 22 concepts were identified, which illustrate the scope of the experience of living with advanced stage breast cancer. Those that predominated were: Impact of Cancer, Coping, Relationships, Living with Dying and Loss. Among other concepts identified were: Self-Perception, Self-Transcendence, Questioning, Hopes, Cause, Decisions, Comparisons and Metaphors for Cancer.
The development of a codebook helped facilitate the team's accurate analysis of the large data set of expressive writing transcripts. The description of the focus of participants' thoughts and feelings when writing deeply provides a beginning description of the experience of living with advanced breast cancer that can be used to guide future research and promote an empathetic understanding of women who are undergoing this process.
The codebook methodology was presented at the 8th National Conference on Cancer Nursing Research, held in Ft. Lauderdale, FL, February, 2005 and was published in 2008:
Fonteyn, ME, Vettese, M, Lancaster, DR, Sauer-Wu, S. Appl. Nurs Res. 2008 Aug;21(3):165-8. A manuscript of the study findings is in review.
Prevalence and Correlates of Smoking Behaviors in Adults with Cancer
Principal Investigator: Mary E. Cooley, PhD, RN
Co-Investigators: Karen Emmons, PhD (Population Sciences), Arthur Garvey, PhD (Harvard School of Dental Medicine), Bruce Johnson, MD (Thoracic Oncology), Jean Lukanich, MD (Thoracic Surgery, Brigham and Women's Hospital), Robert Haddad, MD (Head and Neck Oncology), Marshall Posner, MD (Head and Neck Oncology)
The objectives of the current study are to identify point prevalence and continued abstinence rates among adult smokers with lung and head and neck cancers, and identify factors related to relapse among smokers with cancer. The results from this research will provide information needed to develop interventions and target those who need more intensive smoking cessation interventions.
Recruitment and data collection are underway for this study.
Mentoring Studies
Lymphoma Patients End of Treatment Transition
Principal Investigator: Kristin Roper, MSN, ONC, RN (Radiation Oncology) Co-Investigators: Kecia Boyd, BSN, RN, OCN (Dana 1 Infusion), Christine Coakley, MPH, RN (Dana 1 Infusion), Kathleen McDermott, BSN, RN, OCN (Hematologic Malignancies), Mary Cooley, PhD, RN, and Jacqueline Fawcett, PhD, FAAN (UMass Boston)
In this study, Kristen Roper, RN, MSN, OCN, Christine Coakley, RN, MPH, Kathleen McDermott, RN, and Keisha Boyd, BSN, RN, OCN, are examining the adaptation of patients with Hodgkin's disease (HD) following treatment. This descriptive, longitudinal study focuses on the adaptation of HD patients by describing individual physical symptoms, emotional distress, intimate relationships, and functional status during, at the end of, and after cancer treatment. Another aim of this exploratory study is to identify the types of supportive care services used by this patient population. Such a study is central to developing effective clinical interventions to enhance HD patients' adaptation after treatment.
During the course of this research a review of studies examining the quality of life of both younger and older adults with HD was presented as a podium presentation at the 8th annual Conference on Cancer Nursing Research in 2004. This abstract has also been accepted as a poster presentation at the Annual Boston Area Cancer Survivorship Research Meeting in October 2006, as well as an abstract entitled "Lessons Learned in the Recruitment and Retention of Young Adult Cancer Survivors in a Longitudinal Clinical Trial." Dissemination of the findings of this study began in the summer of 2007.
This research team of clinical nurses has been closely mentored by Dr. Cooley and Jacqueline Fawcet, PhD, RN, FAAN (Cantor Center associate clinical scientist), which has enabled them to secure funding from the national Oncology Nursing Society and the Friends of Dana-Farber. Preliminary findings were presented at the National Conference for Cancer Nursing Research in February 2007. A manuscript of the results is currently in development.
Completed Studies
A Feasibility Study Comparing Two Methods of Port-a-Cath Access in the Pediatric Oncology Patient
Principal Investigator: Ann Deady, MS, RN, NP (Jimmy Fund Clinic)
Co-Investigators: Susan Bauer-Wu, PhD, RN, Martha Healey, MSN, FNP, Deb Yokoe, MD (Infectious Disease), Kristen Graham, RN, BSN (Jimmy Fund Clinic)
The objectives of this pilot study are to access feasibility and to compare outcomes of two implantable venous access techniques – sterile versus clean – in a small sample of 42 pediatric oncology patients undergoing active treatment. Outcome measures will be infection rate, time, and cost.
Dr. Bauer-Wu served as a co-investigator and mentor to Jimmy Fund Clinic Nurse Ann Deady in this exploratory study funded by the Friends of Dana-Farber. The study is complete and results were presented at APHON in October 2007.
Evaluation of the Clinical Trials Video on the Patient's Experience of the Informed Consent Process
Principal Investigator: Susan Hitchcock-Bryan, RN, MPH (Medical Oncology)
Co-Investigators: Susan Bauer-Wu, PhD, RN, Steven Joffe, MD, MPH (Pediatric Oncology), Christina Parker, MD (Office of Research), Andrew Wolanski, NP (Medical Oncology), Mark Powell (Biostatistics & Computational Biology)
The study evaluates the audiovisual program, "Entering a Clinical Trial: Is it Right for You?," to determine whether the program dispels patients' misconceptions about clinical trials. This study assessed the impact of viewing the video on patients' understanding of clinical trials and how that understanding contributes to the informed consent process. The study was completed in 2006 and the results were presented at the National Conference for Cancer Nursing Research in February 2007. The poster was awarded a second-place ribbon among all presenters.
Expressive Writing for Young Women with Newly Diagnosed Breast Cancer
Principal Investigator: Susan Bauer-Wu, PhD, RN
Co-Investigators: Ann Partridge, MD, and Anne Elperin, MS, NP (Women's Cancers); Lidia Schapira, MD, and Mary Artery, MS, NP (Massachusetts General Hospital [MGH])
Funded by the CALGB Foundation, this two-site (Dana-Farber and Massachusetts General Hospital [MGH]) pilot study prospectively evaluates the feasibility and estimated effect size of participation in a four-month expressive writing intervention (Web-based or handwritten) in a group of 90 young women receiving systemic adjuvant therapy for breast cancer. The study is complete and plans are underway to disseminate the results.
Activities of Daily Living in Women with Metastatic Breast Cancer
Dr. Bauer-Wu, Susan DeSanto-Madeya, PhD, RN, of the University of Massachusetts Boston, and Abigail Gross, BA, of the Cantor Center, conducted a secondary analysis of activity logs written by women with metastatic breast cancer. These activity logs were kept over four days per participant (study size: 90 women) as the control writing for the parent study described previously. This data analysis provides insight into the level and extent of activities done by women living with advanced breast cancer.
The study was presented at the Oncology Nursing Society Congress in May 2006, and results of the study were published in Oncology Nursing Forum 2007.
Symptoms in Post-Surgical Lung Cancer Patients
Dr. Cooley, together with Linda Sarna, RN, PhD, from the University of California, Los Angeles, and Jeanne Lukanich, MD, Raphael Bueno, MD, and Michael Jaklitsch, MD, of the Division of Thoracic Surgery at Brigham and Women's Hospital are collaborating on this multi-site study. The overall goal of this project is to determine the profile and characteristics of symptoms of patients who have had surgery for non-small cell lung cancer. The specific aims for this study are to
- Determine the prevalence and trajectory of symptoms and symptom clusters experienced during recovery from treatment,
- Determine demographic, health status, and disease/treatment predictors of the symptom recovery experience,
- Determine the relationship of the symptom experience trajectory to perceptions of quality of life,
- Describe the linkage between types of self-care management strategies for individual symptoms and for symptom clusters, and
- Compare the symptom profile and self-care management strategies used by men and women.
Recruitment and data collection have been completed and data analysis is underway.
Tobacco Use in Women with Lung Cancer
Dr. Mary E. Cooley, together with Linda Sarna PhD, RN, from University of California, Los Angeles Jean Brown PhD, RN from University at Buffalo, State University of New York, Cynthia Chernecky PhD, RN, from Medical College of Georgia, and Roma Williams PhD, RN, formerly from University of Alabama, Birmingham, conducted a secondary analysis using data from 230 women with lung cancer. This analysis aimed to determine smoking prevalence, describe patterns of smoking, identify readiness to quit and cessation strategies, identify factors associated with continued smoking among women with lung cancer, and determine smoking prevalence among household members. The mean age of the sample was 65 years: 84% were Caucasian, 11% were African American, and 81% had early stage disease. The mean time since diagnosis was 2 years. Data were collected through reliable and valid standardized questionnaires and interviews, medical record review, and anthropometrics. Current smoking was determined through self-report and biochemical verification with urinary cotinine. Descriptive statistics, chi-square, and t-tests were used for analyses.
Results from this study revealed that 87% of women reported ever smoking and 37% reported smoking at the time of their diagnosis. Ten percent of women were smoking at entry to the study, 13% were smoking at 3 months and 11% at 6 months. Fifty-five percent of smokers planned a quit attempt within the next month. One-third of smokers received cessation assistance at diagnosis, and pharmacotherapy was the most common strategy. Significant factors associated with continued smoking included younger age, depression, and household member smoking. Continued smoking among household members was 21%. Twelve percent of household members changed their smoking behavior: 77% quit smoking but 13% started smoking.
These findings suggest that the diagnosis of cancer is a strong motivator for behavioral change and some patients need additional support in order to quit smoking. Family members should also be targeted for cessation interventions. The results of this study are currently in press.
Gender Differences in Smoking Relapse
Dr. Mary E. Cooley, Dr. Arthur Garvey and colleagues Mark Powell, Emily Blood and Randy Hoskinson have completed a secondary analysis using data from 608 participants. The purposes of this study were to examine whether pre-cessation and post-quit-day-1 (D1) biopsychosocial and behavioral factors associated with smoking relapse differed among men and women, and to examine potential differences in self-reported reasons for SR. Salivary cotinine was used to confirm smoking abstinence. Descriptive statistics, chi-square, and time-to-event analysis were performed.
Controlling for nicotine replacement gum dose, pre-cessation factors associated with time-to-relapse among men included higher social stress and partner smoking, whereas women with higher financial stress and higher temptation to smoke in positive affect situations were at greater risk for smoking relapse. In a combined model, only the effect of being tempted to smoke in positive affect situations appeared to be different in time-to-relapse among men and women. Controlling for nicotine gum dose, the only D1 factor associated with time-to-relapse in men was having a higher temptation to smoke in negative affect situations. For women, having lower motivation, lower temptation to smoke in negative-affect situations, and higher temptation to smoke in habitual-craving situations were associated with greater risk of smoking relapse. In a combined model, the effects of being tempted to smoke in negative-affect and habitual-craving situations appeared to be significantly different among men and women.
Analysis of self-reported reasons for early smoking relapse showed 24% of women and 37% of men identified smoking out of habit as the reason for smoking relapse. Another 24% of women identified negative affect as the reason for smoking relapse as compared to 14% of men.
The results suggest that factors associated with smoking relapse may differ among men and women. An important finding is that women may underestimate the effect of negative affect on their risk of smoking relapse. Thus, interventions that focus on helping women to anticipate and deal with negative affect situations during smoking cessation attempts may help increase long-term abstinence rates. Results from this study were presented at national conferences and a manuscript is underway.
Age-related Differences in Smoking Relapse among Women
Dr. Mary E. Cooley, Dr. Arthur Garvey and colleagues Mark Powell, Emily Blood and Randy Hoskinson have completed another secondary analysis using data from a community-based sample. This study examined whether pre-cessation and post-quit-day-1 (D1) factors associated with smoking relapse differed among younger (< 40) and older (> 40) women, and examined differences in self-reported reasons for smoking relapse.
The biobehavioral model of nicotine addiction was used to guide this study. Data were collected from 312 women using standardized reliable and valid questionnaires. Salivary cotinine was used to confirm smoking abstinence. Chi-square and multivariate time-to-event analyses were performed. Controlling for nicotine gum dose, pre-cessation factors significantly associated with time-to-relapse were increased depression among younger women and lower motivation and among older women. There was a significant age interaction with depression, and motivation but not dose suggesting that depression and motivation affect time-to-relapse differently in younger versus older women. D1 factors associated with time-to-relapse were increased craving and lower temptation to smoke in negative affect situations among younger women and lower motivation among older women. There was a significant age interaction with craving, temptation to smoke in negative affect situations, and motivation indicating that time-to-relapse differs among younger and older women. Twenty-one percent of younger women as compared to 10% of older women identified use of alcohol as the reason for early smoking relapse. Another 13% of younger women as compared to 24% of older women identified craving tobacco as the reason for early smoking relapse.
Results from this study suggest that factors associated with smoking relapse differ by age. It appears that behavioral treatments targeting enhanced coping in negative affect situations may be beneficial among younger women, whereas behavioral treatments that increase motivation to quit smoking are needed among older women. Results from this study were presented at a national conference and a draft manuscript is underway.
Music Therapy for Women With Metastatic Breast Cancer
Co-Principal Investigators: Susan Bauer-Wu, PhD, RN and Suzanne Hanser, EdD, MT-BC (Cantor Center Associate, Berklee College of Music and the Zakim Center for Integrated Therapies)
Co-Investigator: Craig Bunnell, MD (Women's Cancers)
This randomized, two-group study was aimed at improving quality of life and stress-related outcomes in women with metastatic breast cancer through the use of music therapy. The music therapy program consisted of three individual 45-minute sessions with a music therapist and listening to music every day over the course of the nine weeks.
During the sessions participants learned simple techniques to enhance mood and relaxation through music. Findings from this study, which were published in the Journal of the Society for Integrative Oncology (Vol. 4, Number 3, Summer 2006), revealed significant improvements on immediate measures of anxiety, mood, and comfort as well as lowered heart rate after that music therapy sessions, although no statistically significant differences between the music therapy and control groups on the over-time measures. Qualitative data strongly demonstrates the value of music therapy for some of the participants. The findings were presented at the National Conference for Cancer Nursing Research in 2005.
Presentations Given at the Biannual National Nursing Research Conference: State of the Science of and Alignment with Research Priorities
Principal Investigator: Marsha Fonteyn, PhD, RN, OCN
Co-Investigators: Patrizia Lannen, PhD, Hailun Le and Donna Berry, PhD, RN, AOCN, FAAN
The Oncology Nursing Society research agenda priorities are determined through a consensus-building process that incorporates stakeholder and expert opinion to identify the gaps in scientific knowledge needed to guide current oncology nursing practice. These areas become the research priorities in the ONS Research Agenda that are published on the ONS web site every four years. A logical assumption is that the majority of the research findings that are presented at the ONS National Conference of Cancer Nursing Research would be focused on one or more of these research priorities and that the level of evidence of this research would be consistently increasing. These assumptions are being tested through this study.
All presentation abstracts (poster and podium) given at the National Conference on Cancer Nursing Research from 2003-2007 were categorized by the level of evidence produced by the study findings (based on the ONS continuum of levels of evidence) and by fit with one or more of the ONS research priorities. Study findings have been analyzed and will be presented at the National Conference for Cancer Nursing Research in February 2009.
Fate of Presentations at the Oncology Nursing Society (ONS) National Conference for Cancer Nursing Research: Rate and Type of Subsequent Publications
Principal Investigator: Marsha Fonteyn, PhD, RN, OCN
Co-Investigators: Patrizia Lannen, PhD , Hailun Le and Donna Berry, PhD, RN, AOCN, FAAN
Research presented at scientific meetings is not widely or readily available to clinicians unless it is published in a professional journal. Failure to publish a full-text article after presenting at a meeting is a limitation to evidence-based practice. A clearer description of the extent of this problem in oncology nursing research is needed before interventions can be developed to address any need for improvement. The purpose of this study is to provide a full description of the pattern of the full-text publication of presentations given at the ONS National Conference on Cancer Nursing Research and to identify and describe areas for improvement in the wider dissemination of presentations through publication in professional journals.
A search was conducted in Pub Med and CINAL to locate all full-text publications of the research presented (as either a poster and on the podium) at the 7th (2003) and 8th (2005) National Conference for Cancer Nursing Research. A variety of categories were used to describe the full-text dissemination, including: rate of publication, time to publication, type and referee process of journals identified, whether it was interdisciplinary, and impact factor.
Findings from this study will be presented at the 10th National Conference on Cancer Nursing Research, Orlando, FL, February 2009.
Assessment of Adult Cancer Patient Issues Associated with Oral Chemotherapy Adherence
Principal Investigator: Marsha Fonteyn, PhD, RN, OCN
Co-Investigators: Anne Gross, MS, RN, CNNA and Leslie Spencer, RN
Oral chemotherapy is increasingly being prescribed to many oncology patients, yet the range of problems and issues associated with adherence to this type of therapy have yet to be fully described and interventions are still being developed and tested. This study focused on the development of a survey instrument to identify and describe patient issues and concerns associated with their adherence to oral chemotherapy. It is hoped that the findings from this study will provide a preliminary description of the issues associated with adult patients’ adherence to oral chemotherapy. Participants complete an anonymous, self-administered survey during their regularly scheduled appointment. The 24-item questionnaire will provide information about three broad areas: medication teaching, management, and procurement. It will also gather general demographic data.
Thus far, the survey is proving to be useful and feasible. It takes less than 20 minutes for patients to complete and shows minimal occurrences of incomplete answers. Surprisingly, participants are reporting that they rarely skip or miss even one dose. The survey has identified several areas of concern, most notably that participants are experiencing multiple side effects from the medication and are having some difficulty obtaining and paying for oral chemotherapy prescriptions at commercial pharmacies.
The findings will contribute to the growing body of knowledge about issues associated with patients’ adherence to oral chemotherapy. The survey tool used would be useful to oncology nurses from a variety of practice settings who care for patients receiving oral chemotherapy.
Details about this project were presented at the Oncology Nursing Society Congress held in May 2008. A manuscript is in development.
Assessment of Current Nursing Practice Associated With Oral Cemotherapy Adherence
Principal Investigator: Marsha Fonteyn, PhD, RN, OCN
Co-Investigators: Anne Gross, MS, RN, CNNA, Leslie Spencer, RN, Karen Schulte, MSN, NP, RN, Terry Mazeika, RN and Elizabeth Tracey, PhD, RN
Although the number of patients who are prescribed oral chemotherapy has been steadily increasing, there are not yet established practice standards for the care of these patients. The purpose of this study was to identify and describe the current nursing practice of the direct care registered nurses (RNs) at our ambulatory care cancer center associated with caring for patients receiving oral chemotherapy.
All direct care Dana-Farber Cancer Institute nurses were sent an e-mail inviting them to participate by completing an anonymous web-based survey. The survey instrument was developed from information that was obtained by holding a series of focus groups where subsets of RNs (representing the various direct care roles at our institution) were interviewed about their current practice associated with caring for patients receiving oral chemotherapy. The data was collected through a web-based survey and analyzed using descriptive statistics.
Findings from this study contribute to the development of best practice standards at our facility, to facilitate and support patients' adherence to oral chemotherapy, and will add to the growing body of knowledge about oncology nursing practice associated with patients' adherence to oral chemotherapy.
Findings from this study were presented at the Oncology Nursing Society Congress held in May 2008. A manuscript is in development.
