Teresa L. Hagan

Patient Education vs. Patient Experiences of Self-advocacy: Changing the Discourse to Support Cancer Survivors

A growing emphasis on patient self-advocacy has emerged in the public discourse on cancer survivorship. This discourse shapes patients’ conceptualizations about self-advocacy and in turn influences their health care attitudes and behaviors. The purpose of this discourse analysis is to explore the language of self-advocacy by comparing a published self-advocacy guide with the lived experiences of women with ovarian cancer. Data sources include (1) a self-advocacy patient education guide published by the National Coalition for Cancer Survivorship and (2) transcripts of focus groups conducted with ovarian cancer survivors. Discourse analysis techniques were used to take a close look at the language used by both to uncover the meaning each group ascribed to self-advocacy. Challenges and inconsistencies were noted between the patient education guide and transcripts including viewing self-advocacy as a skill set to assert one’s needs as opposed to a means by which to preserve a positive attitude and maintain a trusting relationship with health care providers, respectively. Some women saw themselves as self-advocates yet struggled to locate relevant health information and hesitated to upset their relationship with their health care providers. This analysis highlights tensions between the discourses and points to ways in which patient education materials can be adjusted to support cancer survivors in advocating for their needs according to their unique situations and preferences.

Creating Individualized Symptom Management Goals and Strategies for Cancer-related Fatigue for Patients With Recurrent Ovarian Cancer

Background: Cancer-related fatigue (CRF) is one of the most common symptoms among women with recurrent ovarian cancer, yet it remains extremely difficult to manage. Symptom management typically requires patients to set goals and strategies to manage their CRF, but little is known about how to create individualized CRF symptom management goals and strategies. Objective: The aim of this study was to describe cancer patients’ goals and strategies for managing CRF along with their process of individualizing both. Methods: This study is a qualitative analysis with supportive quantitative description of a Web-based symptom management randomized clinical trial, the WRITE (Written Representational Intervention to Ease) Symptoms study. Researchers conducted a content analysis on 47 participants’ CRF symptom care plans to identify common themes in participants’ goals, categorize strategies, and describe the individualization process. Results: Four general themes were identified among participants’ CRF goals: (1) enjoying time with friends and family, (2) doing the things I enjoy, (3) having energy to be physically active, and (4) keeping up with what I need to do. Cancer-related fatigue strategies were categorized into 13 groups including conserving energy, increasing activity, and talking with healthcare providers. A multistep individualization process resulted in personally meaningful strategies. Conclusions: The process by which participants individualized their CRF strategies consisted of identifying, confirming, testing, and evaluating different CRF strategies and resulted in refined, specific, and individualized strategies intended to eventually ensure participants achieve their goal. Implications for Practice: Clinicians can assist patients in individualizing their CRF goals and strategies. Individualization of CRF goals and strategies assists patients in visualizing how improving CRF will impact their life.

Symptom management in women with recurrent ovarian cancer: Do patients and clinicians agree on what symptoms are most important?

OBJECTIVE We sought to compare symptoms identified as a priority by patients with recurrent ovarian cancer to symptoms most frequently documented by their clinicians, and examine the association between clinician documentation of symptoms and subsequent clinical intervention. METHODS Single-institution, retrospective chart review of patients enrolled in WRITE Symptoms Study (GOG 259), a randomized controlled trial of internet-based recurrent ovarian cancer symptom management. As part of the trial, women completed the Symptom Representation Questionnaire for 28 symptoms and selected 3 priority symptoms (PS). We compared patient-reported PS to clinician documentation of symptoms and interventions over the time period corresponding to study enrollment. RESULTS At least one PS was documented in 92% of patients. Of 150 PS reported by patients, 53% were never documented by clinicians; these symptoms tended to be less directly related to disease or treatment status. Symptoms not identified by patients as PS were frequently documented by clinicians; these symptoms tended to relate to physiologic effects of disease and treatment toxicity. 58% of patients had at least one PS intervention. PS intervened for were documented at 2.58 visits vs 0.50 visits for PS not receiving intervention (p≤0.0001). CONCLUSIONS Discordance was identified between symptoms reported by patients as important and symptoms documented by clinicians. Symptoms more frequently documented were also more frequently intervened for. Our study illustrates the need to improve identification of symptoms important to patients, and suggests that improving communication between patients and clinicians could increase intervention rates to enhance quality of life in women with recurrent ovarian cancer.

Cancer and treatment-related symptoms are associated with mobility disability in women with ovarian cancer: A cross-sectional study

OBJECTIVE To examine the prevalence of symptom-related mobility disability and identify specific symptoms and other factors associated with mobility disability among a national sample of ovarian cancer (OC) survivors. METHODS Descriptive, correlational secondary analysis of a National Ovarian Cancer Coalition mailed survey of women with a history of OC (n=713). We used the Symptom Representation Questionnaire (SRQ), the MD Anderson Symptom Inventory (MDASI) Interference Scale, and medical and demographic information to determine prevalence of symptom-related mobility disability. We constructed a multiple linear regression model to determine the relative contributions of specific symptoms and other factors to mobility disability. RESULTS A majority of the sample (60.0%) reported symptom-related mobility disability. Independent predictors included: > one comorbidity (β=0.112, p=0.001), active OC (β=0.111, p=0.037), abdominal bloating (β=0.097, p=0.006), fatigue (β=0.314, p<0.001), lack of appetite (β=0.072, p=0.045), numbness/tingling (β=0.134, p<0.001), and pain (β=0.194, p<0.001). The model explained 41.5% of the variance in symptom-related mobility disability (R2=0.415). Unexpectedly, age (β=-0.028, p=0.412) and current chemotherapy (β=0.107, p=0.118) were not significant predictors. CONCLUSIONS Symptom-related mobility disability is common among women with OC and is associated with medical comorbidities, abdominal bloating, fatigue, lack of appetite, numbness/tingling, and pain. Longitudinal research should clarify the relationship of these symptoms to mobility disability and determine whether effective symptom management minimizes disability.

Measurements in Quantitative Research: How to Select and Report on Research Instruments

Measures exist to numerically represent degrees of attributes. Quantitative research is based on measurement and is conducted in a systematic, controlled manner. These measures enable researchers to perform statistical tests, analyze differences between groups, and determine the effectiveness of treatments. If something is not measurable, it cannot be tested.

Nursing's role in leading palliative care: A call to action

Palliative care aims to alleviate the suffering of patients with life-limiting illness while promoting their quality of life. In this call to action commentary, we review the ways in which nursing care and palliative care align, describe barriers to nurses engaging in palliative care, and provide specific recommendations for nurses involved in education, training, and administration to assist nurses at all levels of practice to engage in palliative care for their patients.

Symptom Burden and Self-Advocacy: Exploring the Relationship Among Female Cancer Survivors

BACKGROUND: Although patient self‐advocacy is a critical component of patient‐centered care, the association between symptom burden and self‐advocacy has received little attention. OBJECTIVES: This analysis evaluates the degree to which self‐advocacy is associated with symptom burden among women with a history of cancer. METHODS: Participants completed online or paper questionnaires. Descriptive statistics and ordinary least squares regression models were used to analyze the association between the three dimensions of self‐advocacy and two dimensions of symptom burden: symptom severity and interference. FINDINGS: Participants reported moderate levels of symptom burden. Fatigue, disturbed sleep, and memory problems were most common. Informed decision making was positively associated with symptom burden and participants’ burden across the three most severe symptoms. Effective communication was negatively associated with total symptom burden and the degree to which symptoms interfered with daily life.

Not the last word: dissemination strategies for patient-centred research in nursing

Research results hold value for many stakeholders, including researchers, patient populations, advocacy organisations and community groups. The aim of this study is to describe our research team’s systematic process in designing a dissemination strategy for a completed research study. We organised a dissemination event to feed the results of our study to participants and stakeholders and collect feedback regarding our study. We applied the Agency for Healthcare Research and Quality’s dissemination framework to guide the development of the event and collected participant feedback during the event. We describe our dissemination strategy along with attendees’ feedback and suggestions for our research as an example of a way to design a patient- and community-focused dissemination. We explain the details of our dissemination strategy, including (a) our process of reporting a large research study into a stakeholder event, (b) stakeholder feedback collected at the event and (c) the translation of feedback into our research team’s studies. We also describe challenges encountered during the dissemination process and ways to handle issues such as logistics, funding and staff. This analysis provides key insights and practical advice for researchers looking for innovative ways to disseminate their findings within the lay and scientific communities.

Associations between peripheral neuropathy and nausea/vomiting in survivors of ovarian cancer: Evidence of persistent vagal neuropathies?

165 Background: Persistent numbness and tingling in extremities are reported by many ovarian cancer survivors and are widely recognized symptoms of chemotherapy-induced peripheral neuropathy. Minimal research has addressed the possibility that chemotherapy may also result in vagal neuropathy, with associated adverse effects on somatosensory input to the brain. We hypothesize that ovarian cancer survivors with persistent numbness and tingling, hallmark symptoms of peripheral neuropathy, will report higher levels of nausea and vomiting, consistent with vagal neuropathy. METHODS A secondary analysis was conducted with data from 713 respondents to a survey of randomly selected members of the National Ovarian Cancer Coalition with a history of ovarian cancer. A validated questionnaire was used to assess symptom severity (0-10) at it worst over the past week for 22 commonly reported symptoms. For the present study, analyses were limited to women reporting no evidence of disease following chemotherapy (n = 362) at a mean of 50.3 months post-treatment. The mean age of the sample was 53.1y; 71.7% were married; 54.5% were college graduates. The symptom experiences of women with persistent numbness and tingling , N/T, (n = 206) were statistically compared to those without numbness and tingling (n = 156) with age and time since treatment included as covariates. RESULTS Ovarian cancer survivors with N/T had significantly higher levels of nausea (p < 0.001) and vomiting (p < 0.001), as well as several other symptoms consistent with vagal neuropathy, compared to women without N/T. Sensitivity analysis indicated that among women with the highest N/T severity (7-10), nausea severity was nearly three times higher than among women with the lowest levels of N/T severity (1-3), p < 0.002. CONCLUSIONS Consistent with the study hypothesis, ovarian cancer survivors with persistent numbness and tingling also reported higher levels of nausea and vomiting. These results suggest the importance of new research efforts to examine vagal neuropathy in ovarian cancer survivors.