Dataset Information

Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity.

ABSTRACT:

Background

Clinicians and researchers often have to rely on information from caregivers to assess patients with advanced cancer. This study aims to assess the validity (using patients' assessment as the gold standard) of caregiver reports of patient concerns and the roles of caregiver burden and positivity.

Methods

A total of 64 advanced cancer patient and informal caregiver dyads were recruited from regional palliative care services and interviewed. Patients' outcomes were assessed with both the patient and the caregiver version of the Palliative Outcome Scale (POS); caregiver burden and positivity were collected with the Zarit Burden interview (ZBI) and three questions on achievements and relationships. The agreement between patient- and caregiver-rated POS was measured with weighted kappa statistics. The roles of caregiver burden and positivity in POS agreement were studied with logistic regression controlling for potential confounders; adjusted odds ratios were estimated from the models.

Results

Agreement was substantial for pain, moderate for four items, fair for three items and slight for two items. Compared with patients self-ratings, caregivers described more problems with information given and sharing feelings and were less likely to assess the patient felt their life was worthwhile or felt good about themselves. Disagreement for three POS item ratings was significantly associated with higher caregiver burden: "feeling anxious"(OR: 4.5; 95%CI: 1.3 to 15.6), "life worthwhile"(OR: 12.4; 95%CI: 2.9 to 54.3) and "felt good" (OR: 7.7; 95%CI: 2.0 to 29.6). Caregivers with higher positivity scores were more likely to agree patients' rating of "felt good"(OR: 0.3; 95%CI: 0.1-0.9) but at increased risk of disagreeing about patient's "practical problems"(OR: 4.2; 95%CI: 1.1 to 16.6).

Conclusion

Caregiver burden and positivity affect their assessments, especially of psychological patient domains and whether patients assess their life as worthwhile. Awareness of this might help clinicians and researchers better interpret caregiver assessments.

SUBMITTER: Higginson IJ

PROVIDER: S-EPMC2435233 | biostudies-literature | 2008 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity.

Higginson Irene J IJ Gao Wei W

Health and quality of life outcomes 20080602

<h4>Background</h4>Clinicians and researchers often have to rely on information from caregivers to assess patients with advanced cancer. This study aims to assess the validity (using patients' assessment as the gold standard) of caregiver reports of patient concerns and the roles of caregiver burden and positivity.<h4>Methods</h4>A total of 64 advanced cancer patient and informal caregiver dyads were recruited from regional palliative care services and interviewed. Patients' outcomes were assess ...[more]

PMID: 18518961

Similar Datasets

Project description:BackgroundCaregivers of adults with cancer often report a different understanding of the patient's prognosis than the oncologist. We examine the associations of caregiver-oncologist prognostic concordance with caregiver depressive symptoms, distress, and quality of life (QoL). We also explore whether these relationships differed by caregiver environment mastery, an individual's sense of control, and effectiveness in managing life situations.Materials and methodsWe used data from a national geriatric assessment cluster-randomized trial (URCC 13070) that recruited patients aged 70 years and older with incurable cancer considering any line of cancer treatment at community oncology practices, their caregivers, and their oncologists. At enrollment, caregivers and oncologists estimated the patient's prognosis (0-6 months, 7-12 months, 1-2 years, 2-5 years, and >5 years; identical responses were concordant). Caregivers completed the Ryff's environmental mastery at enrollment. At 4-6 weeks, caregivers completed the Patient Health Questionnaire-2 (depressive symptoms), distress thermometer, and 12-Item Short-Form Health Survey (quality of life [QoL]). We used generalized estimating equations in models adjusted for covariates. We then assessed the moderation effect of caregiver mastery.ResultsOf 411 caregiver-oncologist dyads (mean age = 66.5 years), 369 provided responses and 28% were concordant. Prognostic concordance was associated with greater caregiver depressive symptoms (β = 0.30; p = .04) but not distress or QoL. A significant moderation effect for caregiver depressive symptoms was found between concordance and mastery (p = .01). Specifically, among caregivers with low mastery (below median), concordance was associated with greater depressive symptoms (β = 0.68; p = .003).ConclusionsCaregiver-oncologist prognostic concordance was associated with caregiver depressive symptoms. We found a novel moderating effect of caregiver mastery on the relationship between concordance and caregiver depressive symptoms.Implications for practiceCaregiver-oncologist prognostic concordance is associated with greater caregiver depressive symptoms, particularly in those with low caregiver mastery. When discussing prognosis with caregivers, physicians should be aware that prognostic understanding may affect caregiver psychological health and should assess their depressive symptoms. In addition, while promoting accurate prognostic understanding, physicians should also identify strengths and build resilience among caregivers.

Project description:ImportancePhysicians must participate in end-of-life discussions, but they understand poorly their patients' end-of-life values and preferences. A better understanding of these preferences and the effect of baseline attitudes will improve end-of-life discussions.ObjectiveTo determine how baseline attitudes toward quality vs quantity of life affect end-of-life resource allocation.Design, setting, and participantsOtolaryngology-head and neck surgery (OHNS) physicians were recruited to use a validated online tool to create a Medicare health plan for advanced cancer patients. During the exercise, participants allocated a limited pool of resources among 15 benefit categories. These data were compared with preliminary data from patients with cancer and their caregivers obtained from a separate study using the same tool. Attitudes toward quality vs quantity of life were assessed for both physicians and patients and caregivers.InterventionsParticipation in online assessment exercise.Main outcomes and measuresMedicare resource allocation.ResultsOf 9120 OHNS physicians e-mailed, 767 participated. Data collected from this group were compared with data collected from 146 patients and 114 caregivers. Compared with patients and caregivers, OHNS physician allocations differed significantly in all 15 benefit categories except home care. When stratified by answers to 3 questions about baseline attitudes toward quality vs quantity of life, there were 3 categories in which allocations of patients and caregivers differed significantly from the group with the opposite attitude for at least 2 questions: other medical care (question 1, P < .001; question 2, P = .005), palliative care (question 1, P = .008; question 2, P = .006; question 3, P = .009), and treatment for cancer (questions 1 and 2, P < .001). In contrast, physician preferences showed significant differences in only 1, nonmatching category for each attitude question: cash (question 1, P = .02), drugs (question 2, P = .03), and home care (question 3, P = .048).Conclusions and relevancePatients with cancer and their caregivers have different preferences from physicians. These preferences are, for these patients and their caregivers, affected by their baseline health attitudes, but physician preferences are not. Understanding the effect of baseline attitudes is important for effective end-of-life discussions.

Project description:BackgroundUsing available communication technologies, clinicians may offer timely support to family caregivers in managing symptoms in patients with advanced cancer at home.AimTo assess the effects of an online symptom reporting system on caregiver preparedness, physical burden, and negative mood.DesignA pooled analysis of two randomized trials (NCT00214162 and NCT00365963) was conducted to compare caregiver outcomes at 6 and 12 months after intervention between two randomized, unblinded groups using General Linear Mixed Modeling. Caregivers in one group (Comprehensive Health Enhancement Support System-Only) were given access to an interactive cancer communication system, the Comprehensive Health Enhancement Support System. Those in the other group (Comprehensive Health Enhancement Support System + Clinician Report) received access to Comprehensive Health Enhancement Support System plus an online symptom reporting system called the Clinician Report. Clinicians of patients in the Comprehensive Health Enhancement Support System + Clinician Report group received e-mail alerts notifying them when a symptom distress was reported over a predetermined threshold.Setting/participantsDyads (n = 235) of advanced-stage lung, breast, and prostate cancer patients and their adult caregivers were recruited at five outpatient oncology clinics in the United States.ResultsCaregivers in the Comprehensive Health Enhancement Support System + Clinician Report group reported less negative mood than those in the Comprehensive Health Enhancement Support System-Only group at both 6 months (p = 0.009) and 12 months (p = 0.004). Groups were not significantly different on caregiver preparedness or physical burden at either time point.ConclusionsThis study provides new evidence that by using an online symptom reporting system, caregivers may experience less emotional distress due to the Clinician Report's timely communication of caregiving needs in symptom management to clinicians.

Dataset Information

Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity.

Background

Methods

Results

Conclusion

Publications

Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets