Sara N. Edmond

Long-Term Disease-Specific Functioning Among Prostate Cancer Survivors and Noncancer Controls in the Prostate, Lung, Colorectal, and Ovarian Cancer Screening Trial

PURPOSE Within the Prostate, Lung, Colorectal, and Ovarian Cancer Screening Trial (PLCO), we assessed the long-term disease-specific functioning among prostate cancer (PCa) survivors versus noncancer controls, the impact of trial arm (screening/usual care) on functioning, and the effect of treatment modality on functioning. PATIENTS AND METHODS PCa survivors (n = 529), 5 to 10 years postdiagnosis, were frequency-matched to noncancer controls (n = 514) for race, screening center, year of enrollment, and trial arm. Participants completed a telephone interview regarding PCa-specific symptomatology. Weights accounted for patient selection from the five PLCO screening centers. Propensity-score methods were used to balance groups of interest with respect to demographic and medical characteristics. RESULTS Weighted linear regression analyses revealed poorer sexual and urinary function among PCa survivors compared with noncancer controls (P < .001). Trial arm was not significantly related to any outcome (P > .31). Compared with radical prostatectomy patients (n = 201), radiation-therapy patients (n = 110) reported better sexual (P < .05) and urinary (P < .001) functioning but poorer bowel outcomes (P < .05). Survivors who received treatment combinations including androgen deprivation (n = 207) reported significantly poorer hormone-related symptoms compared with radical prostatectomy patients (P < .05). CONCLUSION This study demonstrated the persistence of clinically significant, long-term PCa treatment-related sexual and urinary adverse effects up to 10 years postdiagnosis. To our knowledge, this was the first comparison of prostate-related dysfunction among screened survivors versus screened noncancer controls and indicated that these long-term problems were attributable to PCa treatment and not to aging or comorbidities. Finally, differences in long-term adverse effects between treatment modalities are particularly relevant for patients and clinicians when making treatment decisions.

Validating pain communication: current state of the science.

There is growing recognition that pain communication is important, and the way that people (e.g. partners, healthcare providers) respond to patients sharing their pain-related thoughts and feelings may have significant implications for pain-related outcomes[8]. One potentially important factor that has been relatively understudied until recently is the level of validation that may or may not be provided by people who are the recipients of a pain communication [4]. Many patients with chronic pain believe that others do not understand their pain or even consider their pain condition to be legitimate[9], beliefs which are likely to lead to increases in psychological distress and negative affect. It is possible that validation of pain-related thoughts and feelings for these patients may lead to reductions in negative affect. Furthermore, validation from a romantic partner may enhance relationship intimacy, which is related to several positive benefits (e.g. increased positive affect, improved psychological well-being) [10; 11]. Despite the potential benefits of validation, some research suggests that receiving social reinforcement (including validation) after sharing pain-related thoughts and feelings may be associated with worse patient outcomes such as increased pain[22]. This paper highlights studies examining the effects of validation of pain-related thoughts and feelings. It is divided into four sections. In the first section, we describe the concept of validation. The second section describes several theories that attempt to explain the impact of validation on patient outcomes (e.g. affect, report of pain intensity). In the third section, we review a number of studies examining validation and invalidation in the context of pain. In the final section of the paper, we highlight several important future directions for research on the influence of validation on chronic pain.

Holding Back Moderates the Association Between Health Symptoms and Social Well-Being in Patients Undergoing Hematopoietic Stem Cell Transplantation

CONTEXT Holding back, or withholding discussion of disease-related thoughts and emotions, is associated with negative outcomes including lower quality of life, diminished well-being, and relational distress. For patients undergoing hematopoietic stem cell transplantation (HSCT), the degree to which one holds back from discussing illness-related concerns may be an important determinant of social well-being and health; however, this has not been systematically assessed in this population. OBJECTIVES The purpose of the present study was to assess the moderating effects of holding back discussion of disease-related concerns on the relationship between health-related symptoms and social well-being in adult patients undergoing HSCT. METHODS Seventy autologous (n = 55) and allogeneic (n = 15) HSCT patients completed measures of holding back, social well-being, and health symptoms (i.e., pain, fatigue, sleep problems, cognitive problems) both before and after transplantation (i.e., three months after transplantation and six months after transplantation). RESULTS In patients with average to high levels of holding back, health symptoms were significantly related to lower levels of social well-being; however, for patients with low levels of holding back, the relationship between health symptoms and social well-being was not significant. CONCLUSION The results of the present study suggest that the level of holding back may be important in understanding how health-related symptoms relate to social well-being in patients undergoing HSCT. These findings underscore the importance of addressing how patients undergoing HSCT communicate about their disease with others as this may be related to their adjustment to illness and treatment.

Medication taking behaviors among breast cancer patients on adjuvant endocrine therapy

PURPOSE To explore how symptoms and psychosocial factors are related to intentional and unintentional non-adherent medication taking behaviors. METHODS Included were postmenopausal women with hormone receptor positive, stage I-IIIA breast cancer, who had completed surgery, chemotherapy, and radiation, and were taking endocrine therapy. Self-administered, standardized measures were completed during a routine clinic visit: Brief Fatigue Inventory, Brief Pain Inventory, Menopause Specific Quality of Life Questionnaire, Functional Assessment of Cancer Therapy General and Neurotoxicity scales, and Self-Efficacy for Appropriate Medication Use Scale. Regression analyses were performed to determine the degree to which demographic, medical, symptom, and psychosocial variables, explain intentional, such as changing ones doses or stopping medication, and unintentional, such as forgetting to take ones medication, non-adherent behaviors. RESULTS Participants were 112 women: mean age 64 (SD = 9) years; 81% white; mean time from surgery 40 (SD = 28) months; 49% received chemotherapy (39% including a taxane); mean time on endocrine therapy, 35 (SD = 29.6) months; 82% taking an aromatase inhibitor. Intentional and unintentional non-adherent behaviors were described in 33.9% and 58.9% of participants, respectively. Multivariate analysis showed that higher self-efficacy for taking medication was associated with lower levels of unintentional (p = 0.002) and intentional (p = 0.004) non-adherent behaviors. The presence of symptoms (p = 0.03) and lower self-efficacy for physician communication (p = 0.009) were associated with higher levels of intentional non-adherent behaviors. CONCLUSIONS These results suggest that women who report greater symptoms, lower self-efficacy for communicating with their physician, and lower self-efficacy for taking their medication are more likely to engage in both intentional and unintentional non-adherent behaviors.

Symptom communication in breast cancer: relationships of holding back and self-efficacy for communication to symptoms and adjustment.

Adjuvant endocrine therapy improves overall survival for women with breast cancer. However, side effects may compromise patients’ quality of life (QOL). This study examined how two communication variables (self-efficacy for symptom communication [SE] and holding back from discussing cancer-related concerns [HB]) relate to QOL, pain and menopausal symptoms. Participants with breast cancer (N = 61) completed questionnaires regarding symptoms, communication, and QOL. SE was positively related to QOL and negatively related to pain interference. HB from discussing cancer-related concerns was related negatively to QOL and positively to pain interference. HB mediated the relationship between SE and QOL as well as between SE and pain interference. Increased SE is beneficial among women on endocrine therapy for breast cancer. Future research should determine if interventions to improve SE are feasible and can improve QOL and symptom tolerability.

Cognitive problems following hematopoietic stem cell transplant: relationships with sleep, depression and fatigue

Cognitive problems are a significant, persistent concern for patients undergoing hematopoietic stem cell transplant (HSCT). Sleep is important for many cognitive tasks; however, the relationship between sleep and cognitive problems for HSCT patients is unknown. This study examined the relationship between sleep and cognitive problems for HSCT patients from pre to post transplant. Patients undergoing HSCT (N=138) completed questionnaires at pre-transplant and during the 12 months following transplant. Questionnaires assessed sleep and cognitive problems as well as commonly co-occurring symptoms: depressive symptoms, fatigue and pain. Post hoc analyses examined the relationship of specific sleep problems with cognitive problems. Sleep problems covaried with cognitive problems even after controlling for depressive symptoms, fatigue and pain. Depressive symptoms and fatigue were also uniquely related to cognitive problems. Post hoc analyses suggest that sleep somnolence, shortness of breath, snoring and perceptions of inadequate sleep may contribute to the association found between sleep and cognitive problems. Findings suggest that sleep problems are associated with and may contribute to cognitive problems for HSCT patients. However, sleep problems are rarely screened for or discussed during clinic visits. Assessing and treating specific sleep problems in addition to depressive symptoms and fatigue may have implications for improving cognitive problems for HSCT patients.

Persistent Breast Pain Among Women With Histories of Breast-conserving Surgery for Breast Cancer Compared With Women Without Histories of Breast Surgery or Cancer.

Objectives: This study compared persistent breast pain among women who received breast-conserving surgery for breast cancer and women without a history of breast cancer. Methods: Breast cancer survivors (n=200) were recruited at their first postsurgical surveillance mammogram (6 to 15 mo postsurgery). Women without a breast cancer history (n=150) were recruited at the time of a routine screening mammogram. All women completed measures of breast pain, pain interference with daily activities and intimacy, worry about breast pain, anxiety symptoms, and depression symptoms. Demographic and medical information were also collected. Results: Persistent breast pain (duration ≥6 mo) was reported by 46.5% of breast cancer survivors and 12.7% of women without a breast cancer history (P<0.05). Breast cancer survivors also had significantly higher rates of clinically significant persistent breast pain (pain intensity score ≥3/10), as well as higher average breast pain intensity and unpleasantness scores. Breast cancer survivors with persistent breast pain had significantly higher levels of depressive symptoms, as well as pain worry and interference, compared with survivors without persistent breast pain or women without a breast cancer history. Anxiety symptoms were significantly higher in breast cancer survivors with persistent breast pain compared with women without a breast cancer history. Discussion: Results indicate that persistent breast pain negatively impacts women with a history of breast-conserving cancer surgery compared with women without that history. Strategies to ameliorate persistent breast pain and to improve adjustment among women with persistent breast pain should be explored for incorporation into standard care for breast cancer survivors.