Perceptions of Burden in Patients With Late-Stage Cancer and Their Caregivers

Rutgers, The State University of New Jersey

Overview

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.

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.

Study Type

OBSERVATIONAL

Conditions

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

Interventions

medical chart reviewOTHER

questionnaire administrationOTHER

psychosocial assessment and carePROCEDURE

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

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

Secondary Outcomes

Identification of coping and personality factors in both caregivers and patients that may be related to the patients' DHD and changes in their DHD

Data from ClinicalTrials.gov

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