Perceptions of Burden in Patients With Late-Stage Cancer and Their Caregivers
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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.
Condition | Intervention |
---|---|
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 Type: | Observational |
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. [ Designated as safety issue: No ]
- 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 [ Designated as safety issue: No ]
- Identification of coping and personality factors in both caregivers and patients that may be related to the patients' DHD and changes in their DHD [ Designated as safety issue: No ]
Enrollment: | 0 |
Study Start Date: | May 2008 |
Study Completion Date: | January 2010 |
Primary Completion Date: | January 2010 (Final data collection date for primary outcome measure) |
OBJECTIVES:
Primary
- 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.
Secondary
- 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.
Ages Eligible for Study: | 18 Years and older |
Genders Eligible for Study: | Both |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
Caregivers and patients with late-stage oncological disease.
DISEASE CHARACTERISTICS:
Meets 1 of the following criteria
Patient with a diagnosis of cancer
- Confirmed late-stage disease refractory to standard primary therapy
- Reside with a non-paid primary caregiver
- Receiving care at the Cancer Institute of New Jersey
Caregiver
- Must be at least 18 years old
PATIENT CHARACTERISTICS:
- Life expectancy ≥ 4 months
- No documented or observable cognitive (e.g., dementia) or psychiatric (e.g., psychosis) problems that would interfere with study participation
- Able to read and write English (patient and caregiver)
PRIOR CONCURRENT THERAPY:
- Not specified
United States, New Jersey | |
Cancer Institute of New Jersey at UMDNJ - Robert Wood Johnson Medical School | |
New Brunswick, New Jersey, United States, 08903 |
Principal Investigator: | Linda Patrick-Miller, PhD | Cancer Institute of New Jersey |
No publications provided
Responsible Party: | Patrick-Miller, Linda, Cancer Institute of New Jersey at UMDNJ - Robert Wood Johnson Medical School |
ClinicalTrials.gov Identifier: | NCT00770419 History of Changes |
Other Study ID Numbers: | CDR0000597594, P30CA072720, CINJ-130601, CINJ-IRB-0220080083 |
Study First Received: | October 9, 2008 |
Last Updated: | February 1, 2011 |
Health Authority: | United States: Institutional Review Board |
Keywords provided by University of Medicine and Dentistry New Jersey:
depression psychosocial effects of cancer and its treatment unspecified adult solid tumor, protocol specific acute undifferentiated leukemia adult acute lymphoblastic leukemia in remission adult acute myeloid leukemia in remission adult acute myeloid leukemia with 11q23 (MLL) abnormalities adult acute myeloid leukemia with inv(16)(p13;q22) adult acute myeloid leukemia with t(15;17)(q22;q12) adult acute myeloid leukemia with t(16;16)(p13;q22) adult acute myeloid leukemia with t(8;21)(q22;q22) atypical chronic myeloid leukemia, BCR-ABL negative chronic myelomonocytic leukemia mast cell leukemia meningeal chronic myelogenous leukemia |
prolymphocytic leukemia recurrent adult acute lymphoblastic leukemia recurrent adult acute myeloid leukemia recurrent adult T-cell leukemia/lymphoma refractory chronic lymphocytic leukemia refractory hairy cell leukemia relapsing chronic myelogenous leukemia secondary acute myeloid leukemia T-cell large granular lymphocyte leukemia AIDS-related diffuse large cell lymphoma AIDS-related diffuse mixed cell lymphoma AIDS-related diffuse small cleaved cell lymphoma AIDS-related immunoblastic large cell lymphoma AIDS-related lymphoblastic lymphoma AIDS-related peripheral/systemic lymphoma |
Additional relevant MeSH terms:
Neoplasms Depression Depressive Disorder Leukemia Lymphoma Lymphoma, Non-Hodgkin Multiple Myeloma Neoplasms, Plasma Cell Plasmacytoma Myelodysplastic Syndromes Preleukemia Myeloproliferative Disorders Nervous System Neoplasms Lymphoma, Large-Cell, Immunoblastic Central Nervous System Neoplasms |
Myelodysplastic-Myeloproliferative Diseases Behavioral Symptoms Mood Disorders Mental Disorders Neoplasms by Histologic Type Lymphoproliferative Disorders Lymphatic Diseases Immunoproliferative Disorders Immune System Diseases Hemostatic Disorders Vascular Diseases Cardiovascular Diseases Paraproteinemias Blood Protein Disorders Hematologic Diseases |
ClinicalTrials.gov processed this record on February 24, 2013