Self and proxy symptom reporting in glioma patient-caregiver dyads: the role of psychosocial function in rating accuracy.

BACKGROUND: Illness-related communication and depressive symptoms within families may play an important role in caregivers' ability to accurately understand patients' symptom burden. We examined the associations between these psychosocial factors and symptom accuracy in patients with glioma and their family caregivers. METHODS: Patients and caregivers (n = 67 dyads) completed measures of depressive symptoms (CES-D), illness communication (CICS), and QOL (SF-36). Patients reported on their own cancer-related symptoms (MDASI-BT) while caregivers reported on their perception of the patients' symptoms (i.e., proxy reporting). Paired t-tests and difference scores were used to test for agreement (absolute value of difference scores between patients and caregiver proxy symptom and interference severity reports) and accuracy (caregiver underestimation, overestimation, or accurate estimation of patient symptom and interference severity). RESULTS: Clinically significant disagreement was found for all means scores of the MDASI-BT subscales except for gastrointestinal symptoms and general symptoms. Among caregivers, 22% overestimated overall symptom severity and 32% overestimated overall symptom interference. In addition, 13% of caregivers underestimated overall symptom severity and 21% of caregivers underestimated overall symptom interference. Patient illness communication was associated with agreement of overall symptom severity (r=-0.27, p = 0.03) and affective symptom subscale (r=-0.34, p < 0.01). Caregivers' reporting of illness communication (r=-0.33, p < 0.01) and depressive symptoms (r = 0.46, p < 0.0001) were associated with agreement of symptom interference. Caregiver underestimating symptom severity was associated with lower patient physical QOL (p < 0.01); caregiver underestimating symptom interference was associated with lower patient physical QOL (p < 0.0001) and overestimating symptom interference was associated with lower patient physical QOL (p < 0.05). Patient and caregiver mental QOL was associated with caregiver underestimating (p < 0.05) and overestimating (p < 0.05) symptom severity. CONCLUSION: The psychosocial context of the family plays an important role in the accuracy of symptom understanding. Inaccurately understanding patients experience is related to poor QOL for both patients and caregivers, pointing to important targets for symptom management interventions that involve family caregivers.

Words matter: The use of generic "you" in expressive writing in an oncology setting.

The use of generic "you" (GY) in writing samples fosters psychological distancing and functions as a linguistic mechanism to facilitate emotion regulation. This method of creating psychological distance from the traumatic experience of cancer may be used by patients processing emotions. We used behavioral coding to analyze expressive writing samples collected from 138 cancer patients to examine the association between the use of "you" and cancer-related symptoms and psychological outcomes. Occurrences of GY were low, but our qualitative results showed how the use of GY could create a universal experience of cancer. The use of GY was not associated with cancer-related symptoms and depressive symptoms, but longitudinal analyses revealed that those using GY had fewer intrusive thoughts and avoidance behaviors across the follow-up period of 1, 4, and 10 months after the intervention. The development of psychological self-distancing prompts to use in writing interventions or as a clinical tool for cancer patients should be explored.

Preliminary validation of the Cognitive Affective Mindfulness Scale-Revised in cancer populations.

OBJECTIVE: A brief, valid, and comprehensive measure of mindfulness is needed for cancer populations. This study examined the factor structure, internal consistency, construct validity, and measurement invariance of the 10-item Cognitive Affective Mindfulness Scale-Revised (CAMS-R) in patients with cancer. METHODS: Patients with breast, gastrointestinal, lung, or prostate cancer (N = 404, 50% stage IV cancer, 51% women) were recruited from academic and public clinics in Indianapolis, IN. Patients completed the CAMS-R and other psychological measures at one time point. Confirmatory factor analysis (CFA) was used to examine the dimensionality of the CAMS-R. Internal consistency and construct validity were also assessed. Measurement invariance was examined for gender, cancer type, and cancer stage. RESULTS: CFA showed that the original CAMS-R structure with four first-order factors (attention, present focus, awareness, and acceptance) and one second-order factor (mindfulness) had a reasonable fit (RMSEA = 0.09, CFI = 0.95, SRMR = 0.04). Internal consistency was excellent (α = 0.90). The CAMS-R total score showed significant positive associations with several subscales of a widely used mindfulness questionnaire and self-compassion (rs = 0.61-0.66) and significant negative associations with anxiety, depressive symptoms, rumination, psychological inflexibility, and avoidant coping (rs = -0.35-0.58). Measurement invariance testing indicated that the CAMS-R was invariant across populations of varying genders, cancer types, and stages. CONCLUSIONS: Findings provide preliminary support for using the CAMS-R in cancer populations. Future research should assess the responsiveness of the CAMS-R to intervention.

Preliminary Validation of the Injustice Experience Questionnaire in Patients With Advanced Cancer.

CONTEXT: When diagnosed with advanced cancer, patients may perceive their situation as an injustice. The Injustice Experience Questionnaire (IEQ) is a 12-item measure of perceived unfairness originally developed for patients with chronic pain. The factor structure, reliability, and validity of the IEQ in patients with cancer have not been assessed. OBJECTIVES: To examine the factor structure, internal consistency, and construct validity of the IEQ in patients with advanced cancer. METHODS: Patients with advanced lung or prostate cancer (N = 201) were recruited from academic and public clinics in Indianapolis, IN. Patients completed the 12-item IEQ and other measures of psychological processes and distress. IEQ instructions were modified to focus on cancer-related perceived injustice. Confirmatory factor analysis (CFA) was used to examine the dimensionality of the measure. Internal consistency reliability and construct validity were examined. RESULTS: CFA showed that the original IEQ's 2-factor structure had an adequate fit (RMSEA = 0.07, CFI = 0.96, SRMR = 0.05). The factors included Severity/irreparability and Blame/unfairness. Internal consistency was excellent (α = 0.92, ω = 0.94). The IEQ showed significant positive associations with physical and psychological symptoms (rs = 0.20 - 0.65, Ps < 0.05). The IEQ also showed significant negative associations with quality of life and acceptance of cancer (rs=-0.51 - -0.46, Ps < 0.05). CONCLUSION: Findings provide preliminary support for using the IEQ in patients with advanced cancer. Future research should assess the sensitivity of the IEQ to change in an interventional context.

Dyadic versus individual delivery of a yoga program for family caregivers of glioma patients undergoing radiotherapy: Results of a 3-arm randomized controlled trial.

BACKGROUND: Despite their significant distress, supportive care interventions for caregivers of glioma patients are generally lacking. And, whether caregivers are more likely to benefit from interventions targeting patient-caregiver dyads or caregivers individually is unknown. This pilot randomized controlled trial compared the feasibility and preliminary efficacy of a dyadic yoga (DY) versus an individual caregiver yoga (CY) intervention as a supportive care strategy for family caregivers. METHODS: Patient-caregiver dyads were randomized to a DY, CY or usual care (UC) arm. DY and CY interventions were delivered over 15 sessions. Caregivers completed assessments of their depressive symptoms, quality of life (QOL), and caregiving reactions at baseline, 6 weeks, and 12 weeks, and a subset completed qualitative interviews at 12 weeks. RESULTS: With a consent rate of 63%, 67 dyads were randomized. Attendance in the DY was higher than in the CY group (session means, DY = 12.23, CY = 9.00; p = 0.06). Caregivers (79% female; 78% non-Hispanic White; mean age, 53 years) reported significantly more subjective benefit in the CY arm than in the DY arm (d = 2.1; p < .01), which was consistent with the qualitative assessment. There were medium effect sizes for improved mental QOL (d = 0.46) and financial burden (d = 0.53) in favor of the CY over the UC group. Caregivers in the CY group reported more caregiving esteem (d = 0.56) and less health decline (d = 0.60) than those in the DY group. CONCLUSION: Individual rather than dyadic delivery may be a superior supportive care approach for this vulnerable caregiver population. A larger, adequately powered efficacy trial is warranted.

Moderators of the association between stigma and psychological and cancer-related symptoms in women with non-small cell lung cancer.

OBJECTIVE: Lung cancer patients, particularly women, are vulnerable to experience disease-related stigma, which is linked to greater psychological distress and worse treatment outcomes. To inform future stigma-resilience interventions, we examined if mindfulness, self-compassion, and social support might buffer the associations between perceived lung cancer stigma and psychological and cancer-related symptoms. METHODS: In this cross-sectional study, women with recently diagnosed non-small cell lung cancer undergoing cancer treatment completed measures of Cataldo Lung Cancer Stigma Scale, depressive (Center for Epidemiologic Studies Depression Scale), stress (Impact of Events Scale) and cancer-related (MD Anderson Symptom Inventory-Lung Cancer) symptoms, mindfulness (Mindful Attention Awareness Scale), self-compassion (Self-Compassion Scale), and social support (Social Provisions Scale). RESULTS: The sample included 56 women (mean age = 65 years; 71% non-Hispanic White; 50% college educated; 74% advanced stage) who had consented to participate in an online support group study. Most (70%) had a smoking history and reported moderate levels of stigma (M = 36.28, SD = 10.51). Based on general linear modeling, mindfulness moderated the associations between stigma and depressive symptoms (F = 5.78, p = 0.02), cancer-related stress (F = 12.21, p = 0.002), and cancer-related symptom severity (F = 4.61, p = 0.04), such that, only for women scoring low in mindfulness, the associations between stigma and symptoms were significant. For those scoring high in mindfulness, the associations between stigma and symptoms were not significant supporting a buffering effect. Self-compassion and social support did not significantly moderate the stigma and symptom associations. CONCLUSIONS: Higher levels of mindfulness may protect women from psychological and cancer-related symptoms typically associated with the stigmatizing experience of a lung cancer diagnosis. Yet, longitudinal studies and randomized controlled designs are needed to identify mindfulness as a causal protective factor.

Pilot Randomized Controlled Trial in Women With Non-Small Cell Lung Cancer to Assess the Feasibility of Delivering Group-Based Psychosocial Care via Videoconference.

BACKGROUND: The goal of this pilot randomized controlled trial was to examine the feasibility and acceptability of delivering group-based psychosocial care via videoconference (ie, Zoom) to women with lung cancer undergoing treatment. METHODS: At baseline, women indicated their typical computer and internet use and were then randomized to a group-based intervention that either focused on mindfulness training or psychoeducation. Participants completed 1 Zoom "practice run" prior to starting the 5 group sessions (1 per week). After the last session, they evaluated their experiences with the intervention and its delivery. RESULTS: With a consent rate of 68%, 54 women (mean age = 66 years; 69% non-Hispanic White; 48% with stage IV disease) were equally randomized. Attendance was high in both arms (session mean, mindfulness = 4.38; education = 4.75; 85% attended all sessions). Across arms, all women rated the program as useful; most preferred group-based delivery (67%) and remote delivery (50%) or had no preference. Although the sample's typical computer use was relatively low (eg, 19% said that they rarely or never use a computer), most women (76%) indicated that Zoom was "very easy" or "easy" to use. After only 0 to 1 attempts, 56% felt comfortable but 26% stated that they never felt comfortable with the technology. CONCLUSIONS: It seems to be feasible to deliver group-based psychosocial interventions via videoconference in women with lung cancer undergoing treatment. Challenges regarding scheduling the group sessions and familiarizing older rather than infrequent computer users with the technology were encountered but resolved over the course of the trial.

Videoconferenced Yoga Interventions for Cancer Patients and their Caregivers during the COVID-19 Pandemic: A Report from a Clinician's Perspective.

BACKGROUND: The acceptability of videoconferencing delivery of yoga interventions in the advanced cancer setting is relatively unexplored. The current report summarizes the challenges and solutions of the transition from an in-person (ie, face-to-face) to a videoconference intervention delivery approach in response to the Coronavirus Disease pandemic. METHOD: Participants included patient-family caregiver dyads who were enrolled in ongoing yoga trials and 2 certified yoga therapists who delivered the yoga sessions. We summarized their experiences using recordings of the yoga sessions and interventionists' progress notes. RESULTS: Out of 7 dyads participating in the parent trial, 1 declined the videoconferenced sessions. Participants were between the ages of 55 and 76 and mostly non-Hispanic White (83%). Patients were mainly male (83%), all had stage III or IV cancer and were undergoing radiotherapy. Caregivers were all female. Despite challenges in the areas of technology, location, and setting, instruction and personal connection, the overall acceptability was high among patients, caregivers, and instructors. Through this transition process, solutions to these challenges were found, which are described here. CONCLUSION: Although in-person interventions are favored by both the study participants and the interventionists, videoconference sessions were deemed acceptable. All participants had the benefit of a previous in-person experience, which was helpful and perhaps necessary for older and advanced cancer patients requiring practice modifications. In a remote setting, the assistance of caregivers seems particularly beneficial to ensure practice safety. CLINICALTRIALS.GOV: NCT03948100; NCT02481349.