Heidi S. Donovan

A Randomized Trial of a Representational Intervention to Decrease Cancer Pain (RIDcancerPain)

OBJECTIVE Based on theories regarding cognitive representations of illness and processes of conceptual change, a representational intervention to decrease cancer pain (RIDcancerPain) was developed and its efficacy tested. DESIGN A two-group RCT (RIDcancerPain versus control) with outcome and mediating variables assessed at baseline (T1) and 1 and 2 months later (T2 and T3). Subjects were 176 adults with pain related to metastatic cancer. MAIN OUTCOME MEASURES Outcome variables were two pain severity measures (BPI and TPQM), pain interference with life, and overall quality of life. Mediating variables were attitudinal barriers to pain management and coping (medication use). RESULTS One hundred and fifty subjects completed the study. Subjects in RIDcancerPain (T1-T2 and T1-T3) showed greater decreases in Barrier scores than those in control. Subjects in RIDcancerPain (T1-T3) showed greater decreases in pain severity than those in control. Change in Barriers scores mediated the effect of RIDcancerPain on pain severity. CONCLUSION RIDcancerPain was efficacious with respect to some outcomes. Further work is needed to strengthen it.

Guiding research in family care: a new approach to oncology caregiving.

Objective: Much research has documented both negative emotional and physical health conditions that may result from providing care to a family member with an illness. However, little has been done in family caregiving, particularly in oncology, to evaluate pathways in which biological and behavioral responses to stress may interact. The purpose of this article is to describe how a mind‐body (biobehavioral) model can be adapted to study family caregivers of persons with a brain tumor.

I could lose everything: understanding the cost of a brain tumor

Although studies have quantified the costs of cancer treatment, few have evaluated the widespread impact of cancer costs on the family unit. Specifically, little is known regarding how cancer affects patients and their families financially, and how they cope with these costs. The purpose of this descriptive study was to explore the financial impact of cancer care in neuro-oncology. Content analysis was used to examine data from interviews with 20 adults receiving treatment for a primary malignant brain tumor. Participants were recruited from across the United States through an advertisement in a national support group newsletter. Four major themes were identified -“paying for medication/healthcare”, “strategies to offset costs”, “impact of cancer costs”, and “fear/uncertainty”. Within the major themes several sub-themes were also recognized. In the theme of paying for medication/healthcare, participants emphasized sub-themes such as frustrations over “not qualifying/red tape” and being “thankful” for what was covered. Some of the strategies used to offset cancer costs included “cashing in” and relying on “family/friends” for financial support. When describing the impact of cancer costs, participants mentioned sub-themes including the “cost to their family”, the “cost of their disability”, and the impact of a “change in income/job”. Results elucidate the financial concerns and coping strategies of persons undergoing treatment for cancer. These data help target patients’ support needs during treatment, such as providing for their family and navigating their insurance policies, and suggest more efficient implementation of financial interventions are needed to alleviate the emotional burden of cancer costs.

Nonspecific Effects in Psychoeducational Intervention Research

Randomized clinical trials support the efficacy of a wide range of psychoeducational interventions. However, the mechanisms through which these interventions improve outcomes are not always clear. At times, the theoretically specified factors within interventions have been shown to have specific effects on patient outcomes. But it has also been argued that other factors not identified in the intervention theory (e.g., “nonspecific” factors such as patient expectations and therapeutic patient—clinician alliances) have powerful nonspecific effects that account for most, if not all, of the observed efficacy of psychoeducational interventions. This article describes important concepts in this debate and discusses key issues in distinguishing between specific and nonspecific effects of psychoeducational nursing interventions. Four examples are used to illustrate potential methods of identifying and controlling for nonspecific effects in clinical intervention trials.

Effects of an intervention to improve communication about end-of-life care among African Americans with chronic kidney disease

The prevalence of and mortality from chronic kidney disease (CKD) are high among African Americans. Interventions to improve knowledge of the likely illness course and the benefits and risks of life-sustaining treatment at the end-of-life are needed for African Americans with CKD and their surrogate decision makers. Nineteen African Americans with stage 5 CKD and their surrogates were randomized to either patient-centered advance care planning (PC-ACP) or usual care. PC-ACP dyads showed greater improvement in congruence in end-of-life treatment preferences (p < .05) and higher perceived quality of communication (p < .05) than do control dyads, but the two groups did not differ on other primary outcomes or acceptability measures, such as perceptions of cultural appropriateness. At posttest, 80% of patients in the intervention group reported that they would choose to continue all life-sustaining treatments in a situation of a low chance of survival, whereas 28.6% of patients in the control group reported that they would make that choice. At posttest, 90% of patients in the intervention group reported that they would choose to undergo cardiopulmonary resuscitation even if the chance of surviving the attempt would be low, whereas 57% of patients in the control group reported that they would make that choice. PC-ACP can be effective in improving patient and surrogate congruence in end-of-life treatment preferences. However, the results suggest a need for further improvements in the intervention to enhance cultural appropriateness for African Americans with CKD.

Representations of fatigue in women receiving chemotherapy for gynecologic cancers

PURPOSE/OBJECTIVES To describe womens representations of fatigue and fatigue-related coping efforts by women receiving chemotherapy. DESIGN Descriptive, correlational. SETTING Outpatient gynecologic oncology clinic. SAMPLE Women receiving chemotherapy for gynecologic cancers. Fifty-four women were recruited; 49 (91%) completed measures. This report focuses on the 27 women who identified fatigue as one of their most noticed symptoms and subsequently completed the fatigue representations measure. METHODS Women completed measures of key research variables at home seven days after receiving chemotherapy. MAIN RESEARCH VARIABLES Representations of fatigue (identity, cause, timeline, consequences, cure or controllability, and emotional representation), fatigue-related coping efforts (communication with healthcare provider, adherence, and self-directed coping strategies), and overall symptom interference with life activities. FINDINGS Women reported a mean of 13.44 different symptoms. They reported a mean fatigue identity (severity) score of 6.48 on a scale of 0-10. On a 0-4 scale, women reported mean fatigue consequences of 2.21, cure or controllability of 1.58, and emotional representations (distress) of 2.16. A majority (59%) had not communicated with their healthcare providers about fatigue at their last appointments, and 56% reported never receiving recommendations for managing fatigue. Sleep or rest was the most common strategy used for managing fatigue. CONCLUSIONS Fatigue is a prevalent, severe symptom that is perceived as distressing and uncontrollable by women receiving chemotherapy for gynecologic cancers. These perceptions may be reinforced by a lack of recommendations from healthcare providers for managing fatigue. IMPLICATIONS FOR NURSING Nurses must make extra efforts to ask patients about fatigue and to provide self-care suggestions for coping with fatigue. Research efforts must continue to evaluate the efficacy of nursing interventions aimed at decreasing cancer-related fatigue.

Symptom clusters in adults with chronic health problems and cancer as a comorbidity.

PURPOSE/OBJECTIVES To identify and compare symptom clusters in individuals with chronic health problems with cancer as a comorbidity versus individuals with chronic health problems who do not have cancer as a comorbidity and to explore the effect of symptoms on their quality of life. DESIGN Secondary analysis of data from two studies. Study 1 was an investigation of the efficacy of an intervention to improve medication adherence in patients with rheumatoid arthritis (RA). Study 2 was an investigation of the efficacy of an intervention for urinary incontinence (UI) in older adults. SETTING School of Nursing at the University of Pittsburgh. SAMPLE The sample for study 1 was comprised of 639 adults with RA. The sample for study 2 was comprised of 407 adults with UI. A total of 154 (15%) subjects had a history of cancer, 56 (9%) of the subjects with RA and 98 (25%) of the subjects with UI. METHODS Analysis of existing comorbidity and symptom data collected from both studies. MAIN RESEARCH VARIABLES Symptom clusters, chronic disease, and cancer as a comorbidity. FINDINGS Individuals with chronic health problems who have cancer may not have unique symptom clusters compared to individuals with chronic health problems who do not have cancer. CONCLUSIONS The symptom clusters experienced by the study participants may be more related to their primary chronic health problems and comorbidities. IMPLICATIONS FOR NURSING Additional studies are needed to examine symptom clusters in cancer survivors. As individuals are living longer with the disease, a comprehensive understanding of the symptom clusters that may be unique to cancer survivors with comorbidities is critical.

Recommended Patient-Reported Core Set of Symptoms and Quality-of-Life Domains to Measure in Ovarian Cancer Treatment Trials

There is no consensus as to what symptoms or quality-of-life (QOL) domains should be measured as patient-reported outcomes (PROs) in ovarian cancer clinical trials. A panel of experts convened by the National Cancer Institute reviewed studies published between January 2000 and August 2011. The results were included in and combined with an expert consensus-building process to identify the most salient PROs for ovarian cancer clinical trials. We identified a set of PROs specific to ovarian cancer: abdominal pain, bloating, cramping, fear of recurrence/disease progression, indigestion, sexual dysfunction, vomiting, weight gain, and weight loss. Additional PROs identified in parallel with a group charged with identifying the most important PROs across cancer types were anorexia, cognitive problems, constipation, diarrhea, dyspnea, fatigue, nausea, neuropathy, pain, and insomnia. Physical and emotional domains were considered to be the most salient domains of QOL. Findings of the review and consensus process provide good support for use of these ovarian cancer-specific PROs in ovarian cancer clinical trials.

Symptom control in patients with recurrent ovarian cancer: measuring the benefit of palliative chemotherapy in women with platinum refractory/resistant ovarian cancer.

Most women with advanced ovarian cancer will relapse and subsequently develop platinum-resistant/refractory ovarian cancer. The benefit of treatment is currently based on objective response rates, which are a crude measure of benefit. It would be clinically meaningful if we were better able to measure the benefit of palliative therapy and, in particular, ascertain whether cancer-related symptoms improve with treatment and how this impacts on quality of life. This paper reviews the management of patients with platinum-resistant/refractory ovarian cancer and highlights the gaps in our knowledge and shortcomings with the current approaches to measure the benefit of treatment. The ultimate objective is to describe and encourage recruitment to the Gynecologic Cancer Intergroup study that has recently opened. This study will recruit a large number of patients from around the world in an effort to develop more robust instruments to measure the benefit of chemotherapy and to understand the impact of chemotherapy on symptom control and quality of life. In addition, this study will give us an insight into how all patients are managed rather than a select minority who are treated in clinical trials.

Development of the measure of ovarian symptoms and treatment concerns: aiming for optimal measurement of patient-reported symptom benefit with chemotherapy for symptomatic ovarian cancer.

Objective The aim of this study was to determine the optimal patient-reported outcome measure (PROM) for assessing symptom benefit in trials of palliative chemotherapy for women with symptomatic ovarian cancer. Methods Candidate PROMs were EORTC QLQ-C30 plus ovarian-specific QLQ-OV28, Functional Assessment of Cancer Therapy-Ovarian (FACT-O), FACT Ovarian Symptom Index (FOSI), and gynecologic cancer-specific Symptom Representation Questionnaire. Predefined optimality criteria were inclusion of all symptoms necessary for the specified purpose, recall period covering typical length of palliative chemotherapy, numerical item rating scales, and all necessary symptoms included in a single symptom index. Qualitative and quantitative methods were applied to data from stage 1 of the Gynecologic Cancer Intergroup Symptom Benefit Study to determine the set of necessary symptoms and to objectively assess candidate PROMs against the optimality criteria. Results Ten necessary symptoms were identified: pain, fatigue, abdominal bloating/discomfort, sleep disturbance, bowel disturbance, nausea and vomiting, shortness of breath, poor appetite, urinary symptoms, and weight changes. Although QLQ-C30 and QLQ-OV28 together cover all these symptoms, they split them into numerous scales, dissipating potential symptom-benefit signal. Conversely, FACT-O does not cover all necessary symptoms and contains many other HRQoL-related items and treatment side effects, diluting potential symptom-benefit signal when summed into scales. Item response scales and composite scoring of all candidate PROMs were suboptimal to our specific purpose. We therefore developed a new PROM, the Measure of Ovarian Symptoms and Treatment (MOST) concerns, to provide optimal measurement for the specified purpose. Conclusions This article documents the development of the MOST, a new PROM designed to assess patient-reported benefits and burden as end points in clinical trials of palliative chemotherapy for women with symptomatic ovarian cancer. The validity, reliability, and statistical efficiency of the MOST, relative to the best candidate scales of existing PROMs, will be assessed in the stage 2 of Gynecologic Cancer Intergroup Symptom Benefit Study.