Perceptions of Burden in Patients With Late-Stage Cancer and Their Caregivers
RATIONALE: Gathering information over time about patients' sense of being a burden on their caregiver, and caregivers' sense of burden on themselves, may help doctors learn more about the desire to die in patients with late-stage cancer.
PURPOSE: This clinical trial is studying perceptions of burden in patients with late-stage cancer and their caregivers.
|Brain and Central Nervous System Tumors Chronic Myeloproliferative Disorders Depression Leukemia Lymphoma Multiple Myeloma and Plasma Cell Neoplasm Myelodysplastic Syndromes Myelodysplastic/Myeloproliferative Neoplasms Psychosocial Effects of Cancer and Its Treatment Unspecified Adult Solid Tumor, Protocol Specific||Other: medical chart review Other: questionnaire administration Procedure: psychosocial assessment and care|
|Study Design:||Observational Model: Cohort
Time Perspective: Prospective
|Official Title:||Perception of Caregiver Burden|
- Relationship between patient's sense of being a burden on primary caregiver & increase in patient desire for hastened death (DHD) by Caregiver Demands Scale (CDS) at baseline & Schedule of Attitudes toward Hastened Death (SAHD) at 2 & 4 mo.
- Contribution of the caregiver's sense of caregiver burden, as measured by the caregiver version of the CDS at baseline, on increases in patient DHD over time
- Identification of coping and personality factors in both caregivers and patients that may be related to the patients' DHD and changes in their DHD
|Study Start Date:||May 2008|
|Study Completion Date:||February 2010|
|Primary Completion Date:||January 2010 (Final data collection date for primary outcome measure)|
- To measure psychosocial correlates of desire for hastened death (DHD) and change in DHD in patients with late-stage cancer by examining the relationship among a patient's perception of being a burden, their caregiver's perceptions of the patient's burdensomeness, and DHD changes over time.
- To identify coping and personality factors in both caregivers and patients that may be related to the patients' DHD and changes in their DHD.
OUTLINE: Patients and caregiver dyads complete questionnaires at baseline, 2 months, and 4 months. The dyads complete demographic questionnaire, the Hospital Anxiety and Depression Scale (HADS), the Beck Hopelessness Scale (BHS), the Dyadic Adjustment Scale (DAS), and the Life Orientation Test-Revised (LOT-R). Patients also complete the Schedule of Attitudes Toward Hastened Death (SAHD), the Brief Coping Orientation to Problems Experienced (Brief COPE), the Memorial Symptom Assessment Scale-Short Form (MSAS-SF), and the Caregiver Demands Scale (CDS). Caregivers also complete the Katz Index of Independence in Activities of Daily Living (IADL).
Patients' medical charts are reviewed for stage and node status at primary diagnosis, previous oncology surgeries, previous adjuvant treatments, treatment at time of recurrence, disease free interval, site of metastasis, and response to current treatment.
Please refer to this study by its ClinicalTrials.gov identifier: NCT00770419
|Principal Investigator:||Linda Patrick-Miller, PhD||Rutgers Cancer Institute of New Jersey|