Caregiver Quality of Life Before and After Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy.

BACKGROUND: Cytoreductive surgery plus intraperitoneal hyperthermic chemotherapy (CRS+HIPEC) is a formidable procedure, often affecting the quality of life (QOL) of the caregiver as well as the patient. We explored the impact of quality of life and depressive symptom burdens of CRS+HIPEC caregivers prospectively. STUDY DESIGN: Patient and caregiver dyads were both consented per IRB-approved protocol; CRS ± HIPEC was performed. The impact on QOL and depressive symptom burdens was assessed on patient-caregiver dyads via the Caregiver Quality of Life (CG QOL-C), CES-D (Center for Epidemiological Studies - Depression) instruments; pre-CS+HIPEC (T1), postoperative (T2), 6 (T3), and 12 (T4) months. RESULTS: Seventy-seven dyads were approached, with 73 participating. Both caregiver and patient depressive symptom trajectories changed significantly. CES-D means for caregivers were (T1-4): 15.1 (SE [standard error] 1.7), 15.0 (1.4), 10.3 (1.4), 13.1 (2.1), p = 0.0008; for patients were: 10.3 (SE 1.1), 13.7 (1.4), 9.0 (1.2), and 10.3 (1.5), p = 0.0002. Preoperatively, caregivers scored 4.8 points (SD 13.4) (p = 0.026) higher than patients. Patients experienced an increase in depression scores at the postoperative visit. At T3, both groups dropped to less concerning levels; yet caregiver CES-D scores increased again at T4 4.7 points (SD 12.5) higher than the patients, and financial well-being became worse from T1 to T3. Possible, probable, and "cases" of depression were higher for caregivers were at all measured time points. CONCLUSIONS: Significant numbers of caregivers endured high depressive symptom burdens and financial concerns. Different caregiver-patient trajectories reflect the need for differential timing of supportive interventions. Evaluation of quality of life and impact of CRS+HIPEC procedures must move beyond assessment of only the patient.

Goals and Adverse Effects: Rate of Concordance Between Patients and Providers.

PURPOSE: Adequate understanding of the goals and adverse effects of cancer treatment has important implications for patients' decision making, expectations, and mood. This study sought to identify the degree to which patients and clinicians agreed upon the goals and adverse effects of treatment (ie, concordance). METHODS: Patients completed a demographic questionnaire, the National Comprehensive Cancer Network Distress Thermometer, the Medical Outcomes Study Social Support Survey, the Functional Assessment of Chronic Illness Therapy-Treatment Satisfaction-General questionnaire, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being questionnaire, and a 13-item questionnaire about the goals and adverse effects of treatment. Providers completed a 12-item questionnaire. RESULTS: One hundred patients (51 female) and 34 providers participated (questionnaire return rate mean difference, 5 days; SD, 16 days). Patient and provider dyads agreed 61% of the time regarding the intent of treatment. In cases of nonagreement, 36% of patients reported more optimistic therapy goals compared to providers. Patients and providers agreed 69% of the time regarding the patient's acknowledgement and understanding of adverse effects. Patients who reported an understanding of likely adverse effects endorsed significantly lower distress scores (mean, 2.5) than those who endorsed not understanding associated adverse effects (mean, 4.1; P = .008). CONCLUSION: Timely data capturing of patient-provider dyadic ratings is feasible. A significant discrepancy exists between a substantial percentage of patients' and providers' views of the intent and adverse effects of treatment. Patients were almost always more optimistic about the intent of treatment. Higher rates of distress were noted in cases of discordance. Providers may benefit from conversational feedback from patients as well as other integrated feedback systems to inform them about patient understanding.

Quality-of-Life Evaluation After Cytoreductive Surgery with Hyperthermic Intraperitoneal Chemotherapy.

BACKGROUND: Cytoreductive surgery (CS) with hyperthermic intraperitoneal chemotherapy (HIPEC) for peritoneal metastases can alleviate symptoms and prolong survival at the expense of morbidity and quality of life (QoL). This study aimed to monitor QoL and outcomes before and after HIPEC. METHODS: A prospective QoL trial of patients who underwent HIPEC for peritoneal metastases from 2000 to 2015 was conducted. The patients completed the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), the Functional Assessment of Cancer Therapy + Colon Subscale (FACT-C), the Brief Pain Inventory, the Center for Epidemiologic Studies Depression scale, and the Eastern Cooperative Oncology Group (ECOG) performance status at baseline, then 3, 6, 12, and 24 months after HIPEC. The trial outcome index (TOI) was analyzed. Proportional hazards modeled the effect of baseline QoL on survival. RESULTS: The 598 patients (53.8 % female) in the study had a mean age of 53.3 years. The overall 1-year survival rate was 76.8 %, and the median survival period was 2.9 years. The findings showed a minor morbidity rate of 29.3 %, a major morbidity rate of 21.7 %, and a 30-day mortality rate of 3.5 %. The BPI (p < 0.0001) and worst pain (p = 0.004) increased at 3 months but returned to baseline at 6 months. After CS + HIPEC, FACT-C emotional well-being, SF-36 mental component score, and emotional health improved (all p < 0.001). Higher baseline FACT-General (hazard ratio [HR], 0.92; 95 % confidence interval [CI], 0.09-0.96), FACT-C (HR, 0.73; 95 % CI 0.65-0.83), physical well-being (HR, 0.71; 95 % CI 0.64-0.78), TOI (HR, 0.87; 95 % CI 0.84-0.91), and SF-36 vitality (HR, 0.88; 95 % CI 0.83-0.92) were associated with improved survival (all p < 0.001). Higher baseline BPI (HR, 1.1; 95 % CI 1.05-1.14; p < 0.0001), worst pain (HR, 1.06; 95 % CI 1.01-1.10; p = 0.01), and ECOG (HR, 1.74; 95 % CI 1.50-2.01; p < 0.0001) were associated with worse survival. CONCLUSIONS: Although HIPEC is associated with morbidity and detriments to QoL, recovery with good overall QoL typically occurs at or before 6 months. Baseline QoL is associated with morbidity, mortality, and survival after HIPEC.

The process of advance care planning in HCT candidates and proxies: self-efficacy, locus of control, and anxiety levels.

The purpose of this study was to examine the relationship between hematopoietic cell transplant candidate and proxy advance care planning (ACP) behavior and attitudes. A total of 49 candidates and 44 proxies completed the Advance Directive Attitudes Survey, Multidimensional Health Locus of Control Scale, Family Decision Making Self-Efficacy Scale, and the State-Trait Anxiety Inventory. In all, 45% of candidates reported completing an advance directive (AD), while only 26% had ADs on file; 80% of candidates discussed ACP wishes with their loved ones and 15% discussed ACP wishes with their medical team. The AD completers were significantly (1) older, (2) more positive about ADs, and (3) were less likely to believe that health events happen by chance. Discrepancies between reported ACP behavior and communication with health care practitioners have implications for end-of-life care.

Hematopoietic stem cell transplant candidate and designated proxy distress levels prior to hematopoietic stem cell transplantation.

Hematopoietic stem cell transplantation (HCT) is associated with a high risk of morbidity, making advance care planning (ACP) essential. The purpose of this study was to assess and compare proxy and HCT candidate distress levels (Distress Thermometer) before (T1) and after (T2) ACP question completion. 79 participants (40 HCT candidates, 39 proxies) rated their distress. The T1, T2 mean distress scores (SD) for HCT candidates were 3.13(2.27), 2.96(2.10); 43% and 38% endorsed clinically significant distress (≥4). Proxies reported 4.21(2.48), 4.33 (2.46); 62% endorsed significant distress at T1, T2. The majority of proxies endorsed distress levels that were clinically significant and comparatively higher (T1 (p = 0.047) and T2 (p = 0.009)) than their paired HCT recipients. Responding to questions about ACP did not increase overall distress ratings.

Patient rated outcomes and survivorship following cytoreductive surgery plus hyperthermic intraperitoneal chemotherapy (CS + HIPEC).

BACKGROUND: Cytoreductive surgery plus hyperthermic intraperitoneal chemotherapy (CS + HIPEC) is a treatment combining cytoreductive surgery with hyperthermic chemotherapy directly into the peritoneal cavity. Recipients may gain extended life when compared with best supportive care; yet results often are achieved with substantial morbidity and health-related quality of life (HRQOL) deficits. The purpose of this study was to record patient rated outcomes and the HRQOL of long-term survivors. METHODS: One hundred and two patients living 12+ months post-treatment completed a survey including the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), Functional Assessment of Cancer Therapy-Colon (FACT-C), and Pittsburgh Sleep Quality Index. RESULTS: SF-36 Physical Component scores were significantly lower than general population norms (46.7, z= -2.943, P=0.003), while Mental Component scores were significantly higher (53.6, z=4.208, P ≤ 0.001). FACT scores were higher than general FACT normative scores. The majority (56%) of these survivors reported significant sleep quality impairment. CONCLUSION: Although most HRQOL scores were comparable to or higher than those of the general population, long-term physical and functional deficits remain. These deficits, along with the poor sleep quality of recipients, may be improved by survivorship programs or targeted psychosocial interventions.