Expanding access to cancer peer support: development of a website to deliver written peer support that meets patients' individual emotional and informational needs while reducing potential harms.

Cancer patients often want information from "peers" with the same diagnosis or treatment. To increase access to this valuable resource, we developed a website to deliver written peer support to cancer patients undergoing stem cell transplant. Because little evidence describes how to optimize benefits or reduce potential harms of written peer support, we gathered multiple forms of stakeholder feedback to inform the website's ethical approach, personalization, design, function, and content: a Community Advisory Board; a longitudinal study of patients' written peer support needs and motivations; focus groups; semi-structured interviews; and usability testing. Findings provide a rich foundation for website development.

Optimizing use of written peer support as a supportive resource in cancer: Focus group insights.

PURPOSE: Cancer survivors frequently describe wanting to learn from others who have had similar diagnoses or treatments (peer support). We conducted focus groups to investigate hematopoietic stem cell transplant survivors' attitudes and preferences regarding accessing written peer support through a website. Although written peer support does not allow for interpersonal interactions with peers, it could increase transplant recipients' access to evidence-based benefits of informational and emotional peer support. METHODS: We conducted four videoconference focus groups with 34 adult transplant survivors who were diverse in their medical and sociodemographic characteristics and geographic location. Discussions were recorded, transcribed, and content analyzed. RESULTS: Many participants reported need for information about transplant beyond what they received from their healthcare providers. Needs varied across participants, as did preferences for characteristics and timing of information optimally provided through peer support. Participants were enthusiastic about the value of written peer support but emphasized that it should be delivered in a way that accommodates variation in transplant experiences, underscores its trustworthiness, and pairs it with useful psychoeducational content. CONCLUSIONS: Findings provide guidance for making written peer support an accessible, supportive resource for transplant survivors. Future research should evaluate personalized online delivery of written peer support paired with psychoeducational content that enhances its benefits. IMPLICATIONS FOR CANCER SURVIVORS: Written peer support delivered online could be a useful, valued resource for transplant survivors.

Rationale and usability findings of an e-health intervention to improve oral anticancer adherence among breast cancer survivors: The My Journey mindfulness study.

BACKGROUND: Approximately 80% of breast cancer survivors are prescribed oral endocrine therapy (ET) medication for 5-10 years following primary treatment, making adherence to ET a critical aspect of cancer survivorship care. Despite the benefits of ET, non-adherence is problematic, and up to half of breast cancer survivors ave been documented to discontinue ET early. Our team developed My Journey, an online, mindfulness-based program designed to improve adherence to ET. This manuscript describes the usability testing of My Journey and the protocol development for the My Journey randomized feasibility trial. METHODS: Usability participants were women (N = 15) with a diagnosis of hormone receptor-positive non-metastatic breast cancer who had initiated ET. Participant impressions and feedback were collected qualitatively and quantitatively using items on usefulness, satisfaction, and ease of use. Participants in the 8-week feasibility trial (N = 80) will be randomized to receive the web-based My Journey intervention or a health education comparison condition. RESULTS: Quantitative feedback on the usability trial was favorable, with a mean overall usability score of 106.3 (SD = 7.7; Range: 83-115) indicating above average usability. Qualitative data showed that participants found several strengths in the initial design of the My Journey online tool and that participants liked the layout of My Journey. CONCLUSIONS: Findings indicate that the My Journey online tool is useable. The program's feasibility is being evaluated in a randomized trial.

Unmet Spiritual Care Needs in Women Undergoing Core Needle Breast Biopsy.

OBJECTIVE: Spiritual care is an important part of healthcare, especially when patients face a possible diagnosis of a life-threatening disease. This study examined the extent to which women undergoing core-needle breast biopsy desired spiritual support and the degree to which women received the support they desired. METHODS: Participants (N = 79) were women age 21 and older, who completed an ultrasound- or stereotactic-guided core-needle breast biopsy. Participants completed measures of spiritual needs and spiritual care. Medical and sociodemographic information were also collected. Independent sample t-tests and chi-square tests of examined differences based on demographic, medical, and biopsy-related variables. RESULTS: Forty-eight participants (48/79; 60.8%) desired some degree of spiritual care during their breast biopsy, and 33 participants (33/78; 42.3%) wanted their healthcare team to address their spiritual needs. African American women were significantly more likely to desire some type of spiritual support compared to women who were not African American. Among the 79 participants, 16 (20.3%) reported a discrepancy between desired and received spiritual support. A significant association between discrepancies and biopsy results was found, χ 2(1) = 4.19, P = .04, such that 2 (7.4%) of 27 participants with results requiring surgery reported discrepancies, while 14 (26.9%) of 52 participants with a benign result reported discrepancies. CONCLUSION: Most women undergoing core-needle breast biopsy desired some degree of spiritual care. Although most reported that their spiritual needs were addressed, a subset of women received less care than desired. Our results suggest that healthcare providers should be aware of patients' desires for spiritual support, particularly among those with benign results.

Persistent breast pain in post-surgery breast cancer survivors and women with no history of breast surgery or cancer: associations with pain catastrophizing, perceived breast cancer risk, breast cancer worry, and emotional distress.

Background: Persistent breast pain (PBP) is prevalent among breast cancer survivors and has powerful negative psychological consequences. The present study provided a first test of the hypothesis that: (a) pain catastrophizing, (b) heightened perceived risk of cancer, and (c) worry that pain indicates cancer may be independent mediating links between breast cancer survivors' experiences of PBP and heightened emotional distress. Methodology: We assessed levels of PBP and psychological factors in breast cancer survivors (Survivor Group: n = 417; Stages I-IIIA; White = 88.7%; Age M = 59.4 years) at their first surveillance mammogram post-surgery (6-15 months). A comparison group of women without histories of breast surgery or cancer (Non-cancer Group: n = 587; White = 78.7%; Age M = 57.4 years) was similarly assessed at the time of a routine screening mammogram. All women completed measures of breast pain, pain catastrophizing, perceived breast cancer risk, and worry that breast pain indicates cancer, as well as measures of emotional distress (symptoms of anxiety, symptoms of depression, and mammography-specific distress). Analyses included race, age, BMI, education, and menopausal status as covariates, with significance set at 0.05. Results: As expected, PBP prevalence was significantly higher in the Survivor Group than in the Non-cancer Group (50.6% vs. 17.5%). PBP+ survivors also had significantly higher levels of emotional distress, pain catastrophizing, mammography-specific distress, and worry that breast pain indicates cancer, compared to PBP- survivors. Structural equation modeling results were significant for all hypothesized mediational pathways. Interestingly, comparisons of PBP+ to PBP- women in the Non-cancer Group showed similar results. Conclusion: These findings suggest the importance of (a) pain catastrophizing, (b) perceived breast cancer risk and, (c) worry that breast pain may indicate cancer, as potential targets for interventions aimed at reducing the negative psychological impact of PBP in post-surgery breast cancer survivors, as well as in unaffected women with PBP due to unknown reasons.

Higher symptom burden is associated with lower function in women taking adjuvant endocrine therapy for breast cancer.

OBJECTIVE: To explore the impact of symptoms on physical function in women on adjuvant endocrine therapy for breast cancer. METHODS: Eligible women were postmenopausal, had hormone receptor positive, stage I-IIIA breast cancer, completed surgery, chemotherapy, radiation, and on adjuvant endocrine therapy. At a routine follow-up visit, women (N = 107) completed standardized symptom measures: Brief Fatigue Inventory, Brief Pain Inventory, Menopause Specific Quality of Life Questionnaire, Functional Assessment of Cancer Therapy Neurotoxicity scales. Two performance measures assessed function: grip strength (Jamar dynamometer; n = 71) and timed get-up-and-go (TUG; n = 103). Analyses were performed with an overall symptom composite score. Correlations and multiple linear regression analyses were performed to test adverse effects on physical function. RESULTS: The mean age was 64 years (range 45-84), 81% white, 84% on an aromatase inhibitor, and on endocrine therapy for mean 35 months (range 1-130 months). Dominant hand grip strength was inversely correlated with symptom composite scores (r = -0.29, p = .02). Slower TUG was positively correlated with higher Charlson comorbidity level (r = 0.36, p < .001) and higher symptom composite scores (r = 0.24, p = .01). In multivariate analyses, weaker dominant and non-dominant hand grip strength were significantly associated with greater symptom composite scores (ß = -0.27, t = 2.43, p = .02 and ß = -0.36, t = 3.15, p = .003, respectively) and slower TUG was associated with higher symptom composite scores (ß = 0.18, t = 1.97, p = .05). CONCLUSIONS: Higher symptom burden is associated with worse physical function, as measured by hand grip strength and TUG. Further study to determine the impact of endocrine therapy and its side effects on function is warranted.

Self-Efficacy for Pain Communication Moderates the Relation Between Ambivalence Over Emotional Expression and Pain Catastrophizing Among Patients With Osteoarthritis.

Pain catastrophizing (ie, the tendency to focus on and magnify pain sensations and feel helpless in the face of pain) is one of the most important and consistent psychological predictors of the pain experience. The present study examined, in 60 patients with osteoarthritis pain who were married or partnered: 1) the degree to which ambivalence over emotional expression and negative network orientation were associated with pain catastrophizing, and 2) whether self-efficacy for pain communication moderated these relations. Hierarchical multiple linear regression analyses revealed a significant main effect for the association between ambivalence over emotional expression and pain catastrophizing; as ambivalence over emotional expression increased, the degree of pain catastrophizing increased. In addition, the interaction between ambivalence over emotional expression and self-efficacy for pain communication was significant, such that as self-efficacy for pain communication increased, the association between ambivalence over emotional expression and pain catastrophizing became weaker. Negative network orientation was not significantly associated with pain catastrophizing. Findings suggest that higher levels of self-efficacy for pain communication may help weaken the effects of ambivalence over emotional expression on pain catastrophizing. In light of these results, patients may benefit from interventions that target pain communication processes and emotion regulation. PERSPECTIVE: This article examines interpersonal processes involved in pain catastrophizing. This study has the potential to lead to better understanding of maladaptive pain coping strategies and possibly better prevention and treatment strategies.

The relationship between holding back from communicating about breast concerns and anxiety in the year following breast biopsy.

PURPOSE: Evidence suggests open communication about breast cancer concerns promotes psychological adjustment, while holding back can lead to negative outcomes. Little is known about the relationship between communication and distress following breast biopsy. Design/ Sample: Women (N = 128) were assessed at the time of breast biopsy and again one week and three, six, and 12 months post-result. METHODS: Linear mixed modeling examined relationships between holding back and anxiety for women with benign results (n = 94) or DCIS/invasive disease (n = 34) following breast biopsy. FINDINGS: Anxiety increased among women with a benign result engaging in high but not low or average levels of holding back. Holding back was positively associated with anxiety post-result in breast cancer survivors, with anxiety decreasing over time. Conclusions/ Implications: Interventions to enhance communication are warranted, and knowledge of the differences among women with benign results and/or DCIS/invasive disease may allow for the development of tailored interventions.

Optimizing delivery of a behavioral pain intervention in cancer patients using a sequential multiple assignment randomized trial SMART.

BACKGROUND/AIMS: Pain is common in cancer patients and results in lower quality of life, depression, poor physical functioning, financial difficulty, and decreased survival time. Behavioral pain interventions are effective and nonpharmacologic. Traditional randomized controlled trials (RCT) test interventions of fixed time and dose, which poorly represent successive treatment decisions in clinical practice. We utilize a novel approach to conduct a RCT, the sequential multiple assignment randomized trial (SMART) design, to provide comparative evidence of: 1) response to differing initial doses of a pain coping skills training (PCST) intervention and 2) intervention dose sequences adjusted based on patient response. We also examine: 3) participant characteristics moderating intervention responses and 4) cost-effectiveness and practicality. METHODS/DESIGN: Breast cancer patients (N=327) having pain (ratings≥5) are recruited and randomly assigned to: 1) PCST-Full or 2) PCST-Brief. PCST-Full consists of 5 PCST sessions. PCST-Brief consists of one 60-min PCST session. Five weeks post-randomization, participants re-rate their pain and are re-randomized, based on intervention response, to receive additional PCST sessions, maintenance calls, or no further intervention. Participants complete measures of pain intensity, interference and catastrophizing. CONCLUSIONS: Novel RCT designs may provide information that can be used to optimize behavioral pain interventions to be adaptive, better meet patients' needs, reduce barriers, and match with clinical practice. This is one of the first trials to use a novel design to evaluate symptom management in cancer patients and in chronic illness; if successful, it could serve as a model for future work with a wide range of chronic illnesses.

Behavioral interventions may prolong remission in patients with inflammatory bowel disease.

UNLABELLED: Inflammatory Bowel Diseases (IBDs) are chronic, relapsing and remitting gastrointestinal conditions with no known cure. Previous studies have linked behavioral factors, including stress and medication adherence, to relapse. PURPOSE: We sought to determine the effect of participation in a behavioral self-management program on incidence of flare within 12 months following behavioral intervention when compared to the natural history of flare incidence prior to program participation. RESULTS: Results from a 2-level regression model indicated that those participants in the treatment group were 57% less likely to flare in the following 12 months (compared to 18% in the control group). The decline in "flare odds" was about 2 times greater in treatment versus controls (OR=0.52, t(34)=2.07, p<0.05). Office visits, ER visits, and disease severity (all p<0.05) were identified as moderators of flare risk. CONCLUSIONS: We have demonstrated 1) a statistical model estimating the likelihood of flare rates in the 12 months following a behavioral intervention for IBD (compared to a control condition), and 2) that the introduction of a behavioral intervention can alter the natural course of a chronic, relapsing and remitting gastrointestinal condition such as IBD.