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Cancer Carepartners: Improving patients' symptom management by engaging informal caregivers.

ABSTRACT: Previous studies have found that cancer patients undergoing chemotherapy can effectively manage their own symptoms when given tailored advice. This approach, however, may challenge patients with poor performance status and/or emotional distress. Our goal is to test an automated intervention that engages a friend or family member to support a patient through chemotherapy.We describe the design and rationale of a randomized, controlled trial to assess the efficacy of 10 weeks of web-based caregiver alerts and tailored advice for helping a patient manage symptoms related to chemotherapy. The study aims to test the primary hypothesis that patients whose caregivers receive alerts and tailored advice will report less frequent and less severe symptoms at 10 and 14 weeks when compared to patients in the control arm; similarly, they will report better physical function, fewer outpatient visits and hospitalizations related to symptoms, and greater adherence to chemotherapy. 300 patients with solid tumors undergoing chemotherapy at two Veteran Administration oncology clinics reporting any symptom at a severity of ?4 and a willing informal caregiver will be assigned to either 10 weeks of automated telephonic symptom assessment (ATSA) alone, or 10 weeks of ATSA plus web-based notification of symptom severity and problem solving advice to their chosen caregiver. Patients and caregivers will be surveyed at intake, 10 weeks and 14 weeks. Both groups will receive standard oncology, hospice, and palliative care.Patients undergoing chemotherapy experience many symptoms that they may be able to manage with the support of an activated caregiver. This intervention uses readily available technology to improve patient caregiver communication about symptoms and caregiver knowledge of symptom management. If successful, it could substantially improve the quality of life of veterans and their families during the stresses of chemotherapy without substantially increasing the cost of care.NCT00983892.

SUBMITTER: Silveira MJ

PROVIDER: S-EPMC3295676 | biostudies-literature | 2011 Nov

REPOSITORIES: biostudies-literature

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Cancer Carepartners: Improving patients' symptom management by engaging informal caregivers.

Silveira Maria J MJ Given Charles W CW Cease Kemp B KB Sikorskii Alla A Given Barbara B Northouse Laurel L LL Piette John D JD

BMC palliative care 20111125

<h4>Background</h4>Previous studies have found that cancer patients undergoing chemotherapy can effectively manage their own symptoms when given tailored advice. This approach, however, may challenge patients with poor performance status and/or emotional distress. Our goal is to test an automated intervention that engages a friend or family member to support a patient through chemotherapy.<h4>Methods/design</h4>We describe the design and rationale of a randomized, controlled trial to assess the ...[more]

PMID: 22117890

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Project description:CONTEXT:Little research has explored coping skills practice in relation to symptom outcomes in psychosocial interventions for cancer patients and their family caregivers. OBJECTIVES:To examine associations of coping skills practice to symptom change in a telephone symptom management (TSM) intervention delivered concurrently to lung cancer patients and their caregivers. METHODS:This study was a secondary analysis of a randomized pilot trial. Data were examined from patient-caregiver dyads (n = 51 dyads) that were randomized to the TSM intervention. Guided by social cognitive theory, TSM involved four weekly sessions where dyads were taught coping skills including a mindfulness exercise, guided imagery, pursed lips breathing, cognitive restructuring, problem solving, emotion-focused coping, and assertive communication. Symptoms were assessed, including patients' and caregivers' psychological distress and patients' pain interference, fatigue interference, and distress related to breathlessness. Multiple regression analyses examined associations of coping skills practice during the intervention to symptoms at six weeks after the intervention. RESULTS:For patients, greater practice of assertive communication was associated with less pain interference (β = -0.45, P = 0.02) and psychological distress (β = -0.36, P = 0.047); for caregivers, greater practice of guided imagery was associated with less psychological distress (β = -0.30, P = 0.01). Unexpectedly, for patients, greater practice of a mindfulness exercise was associated with higher pain (β = 0.47, P = 0.07) and fatigue interference (β = 0.49, P = 0.04); greater practice of problem solving was associated with higher distress related to breathlessness (β = 0.56, P = 0.01) and psychological distress (β = 0.36, P = 0.08). CONCLUSION:Findings suggest that the effectiveness of TSM may have been reduced by competing effects of certain coping skills. Future interventions should consider focusing on assertive communication training for patients and guided imagery for caregivers.

Project description:BackgroundThis systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.MethodsTen electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.ResultsFifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.ConclusionBoth advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.

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Cancer Carepartners: Improving patients' symptom management by engaging informal caregivers.

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Cancer Carepartners: Improving patients' symptom management by engaging informal caregivers.

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