Abstract
Breast cancer is the most common cancer diagnosis among Latinas, and Hispanic women diagnosed with breast cancer have a higher mortality rate than their white non-Hispanic counterparts. ...Moreover, Latina survivors appear to have greater distress related to their diagnosis and treatment than non-Latina white women, in large part due to their lower access to care, financial and linguistic barriers, and cultural issues. These concerns have significant influence on women's quality of life (QOL), yet research indicates their impact may be buffered by the presence of mental health and social support services. Research conducted with predominantly non-Latina survivors suggests that social support positively influences women's adjustment to breast cancer by reducing the intensity of their psychological distress, enhancing their optimism and QOL and encouraging treatment adherence. There is, however, an acknowledged gap in the availability of adequate support interventions for minority groups. Nueva Vida is a community-based organization that provides comprehensive psychosocial support to Latinas with cancer in the Washington, DC, area.
Purpose: The goal of this community-based participatory research (CBPR) project is to evaluate the impact of Nueva Vida's model on levels of self-efficacy, psychological distress, and quality of life. The NV model provides a variety of services that include patient navigation, support groups, individual counseling, peer support, and resources and information. This study looked at the impact of this model for one year.
Procedures: This study is a time-series design with Time 1 (T1) data collection on the day of initial contact with NV, time 2 (T2) within 3 - 10 days of initial contact, time 3 (T3) at 4 months, and time 4 (T4) at 12 months. The instruments used in this study include: Cancer Behavior Inventory - Version 2.0 (CBI) measuring self-efficacy, the Brief Symptom Inventory-18 (BSI-18) measuring psychological distress, and the Satisfaction with Life Domains Scale- Breast Cancer (SLDS-BC) measuring QOL. The sample included 92 Latina women diagnosed with breast cancer that contacted NV and agreed to participate in the study. The interventions offered over the course of the twelve months include, individual counseling, various support group participation, patient navigation, and peer support.
Unpublished data: Eighty-seven participants completed data at Time 1, 69 at T2, 64 at T4, and 57 at T4. There was a statistically significant decrease in depression from T1 to T4 (t = 2.131, df = 55, p < .05) and distress from T1 to T4 (t = 2.302, df = 55, p < .05). In addition, there were trends toward significant decrease in anxiety scores from T1 to T4 ( t = 1,827, df, 55, p < .10) and somatization from T1 to T4 (t = 1.784, df = 55, p < .10). There was a statistically significant improvement in QOL from T1 to T4 (t = -3.453, 49, p < .01). There was no change found in self-efficacy.
Conclusions: The findings support the model that NV uses in improving the lives of Latinas diagnosed with breast cancer, demonstrating that a community-based organization with comprehensive social support services can help reduce distress levels and increase QOL. No change in self-efficacy has brought into question the cultural transferability the instrument selected to measure this variable in this population.
Citation Format: Margaret LG Darling, Claudia Campos, Larisa Caicedo, Karlynn BrintzenhofeSzoc, James R. Zabora, Marcela Blinka, Florencia Gonzalez. Impact of Nueva Vida's model on disparate levels of quality of life, distress, and self-efficacy in Latinas with breast cancer. abstract. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A32. doi:10.1158/1538-7755.DISP13-A32
BACKGROUND:Allogeneic hematopoietic stem cell transplantation (HSCT) generates multiple problems that vary in complexity and create significant distress for both patients and their caregivers. ...Interventions that address patient and family caregiver distress during allogeneic hematopoietic stem cell transplantation (HSCT) have not been tested.
OBJECTIVE:To evaluate the feasibility of conducting an individualized dyadic problem-solving education (PSE) intervention during HSCT and estimate a preliminary effect size on problem-solving skills and distress.
METHODS:The PSE intervention consisted of 4 sessions of the Prepared Family Caregiver PSE model. Data were collected with an interventionist log, subject interviews and standardized questionnaires.
RESULTS:Of the 34 adult dyads screened, 24 were ineligible primarily because of being non-English-speaking (n = 11) and inconsistent caregivers (n = 10). Ten dyads (n = 20) were enrolled, and 8 dyads (n = 16) completed the intervention. Of the 31 sessions, 29 were completed (94%). Worsening patient condition was the primary reason for sessions to be incomplete. Patients attended 90% of the sessions; caregivers attended 74%. Reasons for missed sessions included patient symptom distress and limited caregiver availability. Dyads reported being very satisfied (mean, 4.8 SD, 1.8; range, 1-5), stating "an opportunity to talk" and "creative thinking" were most beneficial.
CONCLUSION:Results suggest that dyads can participate in PSE during HSCT and view it as beneficial. Participants identified the active process of solving problems as helpful.
IMPLICATIONS FOR PRACTICE:Targeted interventions that promote effective, meaningful behaviors are needed to guide patients and caregivers through HSCT. Future research recommendations include testing a version of PSE with fewer sessions, including spousal and nonspousal caregivers and those who are non-English speaking.
Research has demonstrated that the diagnosis of cancer generates more fear than any other medical diagnosis. For most patients with the diagnosis of multiple myeloma, it takes time to fully ...understand how the disease may impact their lives. Given that multiple myeloma is a chronic disease characterized by re-occurring phases of cancer remission and relapse, this diagnosis presents an initial challenge for these patients and their families to grasp what lies ahead with treatment, side effects, and long-term physical, emotional, and social consequences. Although it is a relatively rare disease, patients with multiple myeloma face an unusually complex course of treatment that could include proteasome inhibitors, chemotherapy agents, immunomodulatory agents, radiation therapy, and stem cell transplantation (SCT) and will likely persist for the remainder of their lives. However a model of psychosocial care specific for patients with multiple myeloma and their caregivers has not yet been proposed. We sought to develop a model of care that considered the specific profile of this disease. The authors, representing the multidisciplinary care team, met in December 2012 to identify a model of psychosocial care for patients with multiple myeloma and their caregivers. The model was determined by consensus during the meeting and final agreement following the meeting. The meeting was sponsored by Onyx Pharmaceuticals. The need for targeted psychosocial care for the multiple myeloma patient and caregiver throughout the disease process is essential to ensure quality of life and optimal treatment outcomes. We propose herein the first known model of care for the treatment of multiple myeloma that engages both the patient and their caregivers. Innovative partnerships between psychosocial providers and other entities such as pharmaceutical companies can maximize resources for comprehensive program development. This presentation proposes a model of care that promotes active engagement in therapies for multiple myeloma while engaging the individual patient and their family caregivers. This treatment approach must be evidence-based in terms of distress screening tools, comprehensive psychosocial assessments, and most importantly, in the interventions and measurements of response that clinicians apply to this population.
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Purpose: A program evaluation was conducted to explore the potential effects of a 90‐minute problem‐solving education session for persons with advanced cancer and their families.
Description of ...program: Patients with advanced cancer and their families, who were visiting a tertiary‐care outpatient setting, were invited to attend a 90‐minute individualized educational session that taught basic problem‐solving principles using a cognitive‐behavioral framework. Pre‐education and posteducation data were collected about the confidence of participants in providing care, their feelings about being informed about resources, and their perceptions of their problem‐solving ability.
Results: At baseline, most participants reported low confidence about their ability to provide cancer care and felt uninformed about community resources, but they viewed themselves as moderate‐to‐good problem solvers. Forty‐two educational sessions were delivered to 49 caregivers and 40 patients. Two months later, participants reported feeling more informed about community resources and achieved higher posteducation scores for problem‐solving ability. More caregivers than patients reported that reading The Home Care Guide for Cancer made a great deal of difference in their approach to home care.
Clinical implications: Most educational sessions for families affected by cancer focus on delivering information, not on building skills. These findings suggest that a one‐on‐one educational session that teaches problem‐solving skills can be successfully delivered in a busy clinic setting. Family caregivers are especially likely to benefit from this program.
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A model of psychosocial care specific for patients with multiple myeloma and their caregivers has not yet been proposed. We sought to develop a model of care that considers the specific profile of ...this disease.
The authors, representing a multidisciplinary care team, met in December of 2012 to identify a model of psychosocial care for patients with multiple myeloma and their caregivers. This model was determined by consensus during the meeting and via total agreement following the meeting. The meeting was sponsored by Onyx Pharmaceuticals.
The need for targeted psychosocial care for the multiple myeloma patient and caregiver throughout the disease process is essential to ensure quality of life and optimal treatment outcomes. We propose herein the first known model of care for the treatment of multiple myeloma that engages both the patient and their caregivers.
Innovative partnerships between psychosocial providers and other entities such as pharmaceutical companies can maximize resources for comprehensive program development. This manuscript proposes a model of care that promotes active engagement in therapies for multiple myeloma while engaging the individual patient and their family caregivers. This treatment approach must be evidence based in terms of distress screening tools, comprehensive psychosocial assessments, and, most importantly, in the interventions and measurements of response that clinicians apply to this population.
Abstract
Background: Latina survivors appear to have greater distress related to their diagnosis and treatment than non-Latina White women due to lower access to care, financial, linguistic barriers ...& cultural issues. These concerns have a significant influence on women's quality of life yet research indicates their impact may be buffered by the presence of mental health and social support services. Based on this data and the lived experiences of Latinas with breast cancer in the Washington, DC area, NV was founded in 1996 by a group of Latina breast cancer survivors and health professionals. Purpose: The goal of this community based organization-academic partnership project is to evaluate the impact of NV's social support model on levels of self-efficacy, psychological distress, and quality of life. The NV model provides comprehensive services including patient navigation, support groups, individual counseling, peer support, and information. This study is looking at the impact of this model on participants over one year.
Methods: A time-series design with time 1 (T1) data collection on the day of initial contact with NV, time 2 (T2) within 3–10 days of initial contact, time 3 (T3) at 4 months, and time 4 (T4) at 12 months. The instruments used in this study include: Cancer Behavior Inventory - Version 2.0 (CBI) measuring self-efficacy, the Brief Symptom Inventory-18 (BSI-18) measuring psychological distress, and the Satisfaction with Life Domains Scale-Breast Cancer (SLDS-BC) measuring quality of life. The sample includes women diagnosed with breast cancer who contacted NV and agreed to participate in the study. The interventions offered over the course of the twelve months include, individual counseling, various support group participation, patient navigation, and peer support.
Results: Data collection took place between March 2008 to December 2010. Eighty-nine participants completed data at Time 1, 69 at T2, 64 at T3, and 57 at T4. At T1 62.9% of the participants reported distress needing psychosocial intervention. This is almost twice as the prevalence rate of 32.8% for breast cancer among the general population reported by Zabora et al. (2001). There was a statistically significant decrease in depression (p< .05), overall distress (p< .05), and QOL (p < .01). There was a decrease in anxiety (p = .07) and somatization (p =.07) but no change in level of self-efficacy.
Conclusions: The findings support the model that NV uses in improving the lives of Latinas diagnosed with breast cancer. Its findings demonstrate that a community based organization with comprehensive social support services can help reduce distress levels and increase quality of life. The high rate of distress is an important finding and highlights the need for community organizations to be prepared to provide support for Latinas with breast cancer. No change in self-efficacy has brought into question the instrument selected to measure this variable in this population.
Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A58.
Oncology social workers are the primary providers of psychosocial care for cancer patients, thus they are well positioned to implement and oversee psychosocial distress screening. A national survey ...of members of the Association of Oncology Social Work was conducted to examine screening knowledge, attitudes, behaviors, and perceived competency. The findings indicated that most participants screened for psychosocial distress using a standardized instrument and identified institutional and individual barriers to implementing screening. Analyses revealed that social workers who perceived patient benefits from screening and were knowledgeable about guidelines were significantly more likely to implement screening procedures and use a standardized instrument.
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Despite a recent growth in our understanding of the impact of psychosocial factors on the outcome of patients with cancer there is still relatively little known about the effect of these issues on ...patients with genitourinary malignancies. We determined the prevalence of psychological distress in patients with bladder cancer prior to and following radical cystectomy.
A total of 74 consecutive patients with clinically organ confined bladder cancer were prospectively surveyed preoperatively using the Basic Symptom Inventory-18, a validated instrument that measures the psychological domains of general distress, anxiety, depression and somatization. Of the initial 74 patients 62 were available for postoperative assessment 1 month following cystectomy. Preoperative and postoperative distress scores were evaluated with respect to age, sex, marital status, type of surgical reconstruction and tumor stage.
The preoperative prevalence of psychological distress in patients diagnosed with bladder cancer was 45% and it remained somewhat increased at 34% approximately 4 weeks after cystectomy. Demographic factors such as gender, age, and marital status were not significantly associated with the overall prevalence of distress. In the entire study group there was a statistically significant decrease in general distress (p = 0.028), depression (p = 0.034) and anxiety (p = 0.0004) from the preoperative to the postoperative assessments. Pathological stage was significantly associated with post-cystectomy anxiety (p = 0.040) and general distress (p = 0.042).
Our findings indicate that a large proportion of patients with bladder cancer undergoing radical cystectomy experience psychological distress during the perioperative period. The identification of psychological distress in this population has the potential to influence health related quality of life as well as recovery in all individuals with bladder cancer.
Identifying cancer patients who are experiencing psychosocial challenges during the early phase of oncology treatment can prevent escalating patient distress. Standardized screening methods allow the ...medical team to identify those at high risk for poor adjustment. The purpose of this study was to provide preliminary psychometric evidence for a brief, self-administered screening instrument, the Psycho-Oncology Screening Tool (POST), designed to evaluate emotional and physical distress, depressive symptoms, and social concerns. Participants included 944 radiation oncology patients who completed the POST prior to their treatment appointment and a subgroup of 516 patients who completed the POST and one of six concurrent validity measures. Psychometric analysis included construct validity evidence provided through confirmatory factor analysis (CFA), internal reliability estimates, and concurrent validity estimates assessed with bivariate correlations between POST subscales scores and conceptually similar established measures. A three-factor CFA model was found to produce acceptable model fit, supporting the three domain structure of the POST. Furthermore, the three subscales-emotional and physical distress, depressive symptoms and social concerns-were found to produce acceptable internal reliability estimates (α = .73-.88). Concurrent validity evidence was observed with significant, moderate to large correlations between the POST subscales and all relevant measures (i.e., Profile of Mood States, Hospital Anxiety and Depression Scale, Functional Assessment of Cancer Therapy Fatigue, Beck Depression Inventory, Pain Disability Index, and the Interpersonal Support Evaluation List) with correlations ranged from 0.42 to 0.83, p < 0.01. Patients and clinic staff reported no problems administering or completing the POST. Results of this study support the psychometric soundness as well as the feasibility and acceptability of the POST as a brief screening tool for oncology patients receiving outpatient services.
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