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Associations between advanced cancer patients' survival and family caregiver presence and burden.

ABSTRACT: We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival.

SUBMITTER: Dionne-Odom JN

PROVIDER: S-EPMC4864814 | biostudies-literature | 2016 May

REPOSITORIES: biostudies-literature

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Associations between advanced cancer patients' survival and family caregiver presence and burden.

Dionne-Odom J Nicholas JN Hull Jay G JG Martin Michelle Y MY Lyons Kathleen Doyle KD Prescott Anna T AT Tosteson Tor T Li Zhongze Z Akyar Imatullah I Raju Dheeraj D Bakitas Marie A MA

Cancer medicine 20160210 5

We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver ...[more]

PMID: 26860217

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Project description:BackgroundClinicians 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.MethodsA 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.ResultsAgreement 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).ConclusionCaregiver 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.

Project description:BACKGROUND:Polypharmacy may be particularly burdensome near the end of life, as patients "accumulate" medications to treat and prevent multiple diseases. OBJECTIVE:To evaluate associations between polypharmacy, symptom burden, and quality of life (QOL) in patients with advanced, life-limiting illness (clinician-estimated, 1 month-1 year). DESIGN:Secondary analysis of baseline data from a trial of statin discontinuation. PARTICIPANTS:Adults with advanced, life-limiting illness. MAIN MEASURES:Polypharmacy was assessed by summing the number of non-statin medications taken regularly or as needed. Symptom burden was assessed using the Edmonton Symptom Assessment Scale (range 0-90; higher scores indicating greater symptom burden) and QOL was assessed using the McGill QOL Questionnaire (range 0-10; higher scores indicating better QOL). Linear regression models assessed associations between polypharmacy, symptom burden, and QOL. KEY RESULTS:Among 372 participants, 47% were age 75 or older and 35% were enrolled in hospice. The mean symptom score was 27.0 (standard deviation (SD) 16.1) and the mean QOL score was 7.0 (SD 1.3). The average number of non-statin medications was 11.6 (SD 5.0); one-third of participants took ≥ 14 medications. In adjusted models, higher polypharmacy was associated with higher symptom burden (coefficient 0.81; p < .001) and lower QOL (coefficient - .06; p = .001). Adjusting for symptom burden weakened the association between polypharmacy and QOL (coefficient - .03; p = .045) without a significant interaction, suggesting that worse quality of life associated with polypharmacy may be related to medication-associated symptoms. CONCLUSIONS:Among adults with advanced illness, taking more medications is associated with higher symptom burden and lower QOL. Attention to medication-related symptoms and shared decision-making regarding deprescribing are warranted in this setting. NIH TRIAL REGISTRY NUMBER:ClinicalTrials.gov Identifier for Parent Study - NCT01415934.

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Associations between advanced cancer patients' survival and family caregiver presence and burden.

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Associations between advanced cancer patients' survival and family caregiver presence and burden.

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