PURPOSE: Approximately 20% of caregivers (CGs) live > 1 hour away from the patient and are considered distance caregivers (DCGs) who often report higher distress and anxiety than local CGs. The purpose of this study was to test the effectiveness of an intervention aimed at reducing anxiety and distress in DCGs of patients with cancer. METHODS: This randomized controlled trial enrolled DCGs of patients with all cancer types who were being seen monthly by oncologists in outpatient clinics. There were three arms of the intervention delivered over a 4-month period: arm 1 (a) received 4 monthly videoconference-tailored coaching sessions with an advanced practice nurse or social worker focused on information and support, (b) participated in patient’s appointments with the oncologist via videoconference over the 4-month study period, and (c) had access to a website designed for DCGs. Arm 2 did not receive the coaching sessions but received the other two components, and arm 3 received access to the DCG website only. RESULTS: There were 302 DCGs who provided pre- and postintervention data. There were significant anxiety by group ( P = .028 and r = 0.16) and distress by group interactions ( P = .014 and r = 0.17). Arm 1 had the greatest percentage of DCGs who demonstrated improvement in anxiety (18.6%) and distress (25.2%). CONCLUSION: Coaching and use of videoconference technology (to join the DCG into the patient-oncologist office visit) were effective in reducing both anxiety and distress for DCGs. These components could be considered for local CGs who—with COVID-19—are unable to accompany the patient to oncologist visits.
Distance caregivers (DCGs) represent a growing demographic. The emotional burden of caregiving for a family member with cancer is amplified by the logistical challenges of providing support from afar. DCGs feel higher levels of distress, anxiety, and depression compared with local caregivers. Videoconference technology may alleviate both the emotional and practical burdens faced by DCGs. This is an ongoing randomized controlled trial in 32 outpatient ambulatory clinics at a large, urban, comprehensive cancer center. To date, 332 patient‐DCG dyads have been enrolled. DCGs must have internet access and have been identified by the patient as a source of support. The intervention period is 4 months. DCGs are randomized to one of three arms: DCGs in Arm 1 receive four coaching sessions with an advanced practice nurse or social worker and four videoconference appointments during the oncologist‐patient office visit. DCGs in Arm 2 participate in four videoconference appointments with the oncologist and patient, and Arm 3 is the control group, which receives access to information through a website. Primary outcome variables are DCG distress, anxiety, depression, burden, self‐efficacy, and emotional support. These data are collected electronically at baseline, 4 months, and 6 months. Patient distress, anxiety, and depression are also assessed at these same intervals using brief in‐person interviews. The change in each of the DCG outcomes over time will be examined by a repeated measures analysis of covariance.
Introduction-The ability of oncologists to understand patients' goals of care is recognized as a key component of quality care. The purpose of this study is to examine the influence of patientoncologist agreement regarding goals of care upon aggressive care at end of life (EOL) for patients with advanced cancer.Methods-Patients with advanced cancer and their oncologists were interviewed at study enrollment and every 3 months thereafter until patient death or end of the study period (15 months). A 100 point visual analogue scale was used to represent goals of care, with quality of life (scored as 0) and survival (scored as 100) as anchors. Strong goal of care agreement for survival was defined as oncologist and patient dyadic goal of care scores that fell between 70-100 (100=highest goal for survival) and for comfort, dyadic goal of care values that fell between 0-30 (0=high goal for comfort).Results-Two hundred and six patients and eleven oncologists provided data. At the last interview prior to death, 23.3% of dyads had strong goal of care agreement for either survival (8.3%) or comfort (15%) and 76.7% had no strong agreement. There was a significant association between aggressive care use and categories of dyadic agreement regarding goals of care (p=.024, Cramer's V=.15).
In the United States, there is no consensus about who should make decisions in acute but non-emergent situations for incapacitated patients who lack surrogates. For more than a decade, our academic medical center has utilized community volunteers from the hospital ethics committee to engage in shared decision-making with the medical providers for these patients. In order to add a different point of view and minimize conflict of interest, the volunteers are non-clinicians who are not employed by the hospital. Using case examples and interviews with the community members, this paper describes how the protocol has translated into practice over the years since its inception. Members reported comfort with the role as well as satisfaction with the thoroughness of their discussions with the medical team. They acknowledged feelings of moral uncertainty, but expressed confidence in the process. Questions raised by the experience are discussed. Overall, the protocol has provided oversight, transparency, and protection from conflict of interest to the decision-making process for this vulnerable patient population.
Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.
12123 Background: Family caregivers are increasingly involved in providing care and support for patients with cancer. Approximately 20% of caregivers live > 1 hour away from the patient and are considered DCGs. DCGs report higher distress and anxiety than local caregivers—often due to lack of first hand information and a high degree of uncertainty regarding the patient’s condition. Methods: This RCT was conducted at a large, urban comprehensive cancer center. Patients of all cancer types were eligible if they had monthly oncologist appointments and were receiving treatment. DCGs were randomized to one of three arms. Arm 1 received 4 monthly videoconference coaching sessions with a nurse practitioner or social worker focused upon information and support, participated in patient’s appointments with the oncologist via videoconference over the 4 month study period, and had access to a website designed for DCGs. Arm 2 did not receive the coaching sessions but received the other 2 components of Arm 1. Arm 3 received access to the DCG website only. Primary variables of interest were DCG distress and anxiety. DCGs completed online surveys prior to randomization and at the completion of the intervention period. PROMIS Anxiety and the NCCN distress thermometer were used. Results: Between November, 2016 and October, 2019, 441 patient-dyads were enrolled. Mean DCG age was 47 years; 71% were female, 65% Caucasian, 63% were the child of the patient and 81% were employed. Mean patient age was 65 years, 60% were female, 30% had GI cancer and 18% had hematologic cancer. For patients with solid tumor cancers, 59% were Stage IV. RMANOVA was used to examine the change in anxiety t-scores over time by arms of the intervention, controlling for DCG age, race, and gender. There was a significant anxiety by group interaction (p = .03) with Arm 1 being the only group that showed a significant reduction in anxiety over time (21.2% improved, ES = .57). Distress followed a similar pattern with a significant distress by group interaction (p = .02) with Arm 1 demonstrating the greatest improvement in distress over time (54.3%). Conclusions: These data suggest that the use of a coaching videoconference intervention made significant and clinically meaningful differences in anxiety and distress for these important members of the family caregiving team. Clinical trial information: NCT02666183 .
e24198 Background: Distance Caregivers (DCGs) – caregivers living > 1 hour away from the patient – face unique challenges regarding frustration at receiving second hand information about the patient’s condition and uncertainty regarding how to assist the patient. Videoconferencing allows DCGs to connect for the patient’s oncology appointments while avoiding costly travel expenses and time away from work and family. Methods: 441 patient-DCG dyads enrolled in a randomized controlled trial at a large, urban comprehensive cancer center. Patients of all cancer types were eligible if they had monthly oncologist appointments. DCGs were randomized to one of three arms. Arm 1 – received four monthly videoconference coaching sessions with a nurse or social worker, connected for the patient’s oncology appointments, and had access to a website designed for DCGs; Arm 2 – connected for the patient’s oncology appointments over four months and had access to the DCG website; Arm 3 – received access to the DCG website. To evaluate the impact on clinical practice, outpatient oncology appointments were timed. Helpfulness of the intervention was rated from 0-10 with higher scores representing greater amounts of helpfulness. Descriptive statistics, ANOVA, and Pearson’s correlation were conducted to describe features, determine group differences, and identify relationships among variables. Results: Mean helpfulness ratings were 9.06 (patients), 9.30 (local caregivers), 9.08 (DCGs), and 7.98 (oncologists). Average appointment times (in minutes) for Arm 1, Arm 2, and Arm 3 were 19.63 (SD = 7.69), 21.34 (SD = 9.95), and 17.80 (SD = 10.20), respectively. Arm 2 had significantly longer appointments than Arm 3 (mean difference: 3.54, p = .025). No relationships were found between length of appointment time and helpfulness ratings. Conclusions: The videoconferencing intervention was well-received by oncologists, patients, and DCGs. Appointments were longest in Arm 2, followed by Arm 1, then Arm 3 (control). It makes sense that connecting an additional person lengthened the meetings, but it was noteworthy that Arm 2 was longest. DCGs in Arm 2 (who did not have the coaching) likely had more unanswered questions that were discussed with the oncologist compared to Arm 1 DCGs. Cancer centers should consider this when implementing videoconferencing technology. Clinical trial information: NCT02666183 .
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