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

Rutgers The State University of New Jersey

Status: Withdrawn

Conditions: Multiple Myeloma and Plasma Cell Neoplasm; Brain and Central Nervous System Tumors; Unspecified Adult Solid Tumor, Protocol Specific; Chronic Myeloproliferative Disorders; Psychosocial Effects of Cancer and Its Treatment; Lymphoma; Depression; Leukemia; Myelodysplastic Syndromes; Myelodysplastic/Myeloproliferative Neoplasms

Treatments: Procedure: psychosocial assessment and care; Other: medical chart review; Other: questionnaire administration

Study type: Observational

Funder types: Other; NIH

Identifiers

NCT00770419

CDR0000597594

P30CA072720 (U.S. NIH Grant/Contract)

CINJ-IRB-0220080083

130601

Details and patient eligibility

About

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.

Full description

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.

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

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