Rummans, Teresa A.

AbstractObjectivesCaregiving can negatively impact well‐being. Cancer caregivers face unique challenges given the intense nature of cancer and treatment, which increases their risk for burden, poor quality of life (QOL), and burnout. Studies to reduce caregiver burden demonstrate QOL improvement and distress reduction in the short term. However, few studies exist to address long‐term benefits. We assessed changes in various QOL domains after participation in a QOL intervention for caregivers of patients having newly diagnosed advanced cancer.MethodsOur institutional review board‐approved study randomized patient–caregiver dyads to either usual care or an in‐person group intervention composed of six 90‐min sessions of structured multidisciplinary QOL components delivered over 4 weeks, with 10 follow‐up phone calls within 20 weeks. Caregivers attended four of the six sessions attended by patients. Sessions included physical therapy, coping and communication strategies, mental health education, spirituality, and social needs. Caregiver QOL (Caregiver Quality of Life Index‐Cancer Scale [CQOLC] and Linear Analogue Self‐Assessment [LASA]) and mood (Profile of Mood States‐Brief [POMS‐B]) were measured at baseline and 4, 27, and 52 weeks. Wilcoxon tests and effect sizes were used to compare the caregiver groups.ResultsOf the 131 caregivers (65 intervention and 66 usual care), 116 completed the study. Caregivers post‐intervention (at 4 weeks) had improved scores on LASA Spiritual Well‐being; POMS‐B total score, Vigor/Activity, and Fatigue/Inertia; and CQOLC Adaptation. At long term (at 27 weeks), caregivers retained improvement in POMS‐B Fatigue/Inertia and gained improvements in CQOLC Disruptiveness and Financial Concerns.ConclusionsCaregivers who received the intervention had higher QOL ratings for specific QOL domains but not for overall QOL. Although a comprehensive intervention was helpful, more specific, targeted interventions tailored for individual needs are recommended. Copyright © 2015 John Wiley & Sons, Ltd.

Background: The burden associated with caregiving has been well documented. Caregivers have multiple responsibilities, and technology may be accessible as a potential burden-alleviating resource. Materials and Methods: We surveyed cancer caregivers regarding current technology use and willingness to use technology for easing burden or distress. Because age has been associated with technology use, responses were compared between geriatric (≥65 years old) and nongeriatric (18–64 years old) caregivers. Results: We had 112 respondents. Based on nonmissing responses, 66% ( n =71) were women, 95% ( n =106) were white, and 84% ( n =91) had post–high school education. Almost all caregivers reported having Internet (105 [94%]) and e-mail (102 [91%]) access. Nongeriatric caregivers indicated more willingness to access Internet-based tools that help caregivers (54 [93%] versus 41 [76%]; p =0.04) and were more frequent users of social media (37 [64%] versus 16 [30%]; p =0.01), smartphones (33 [57%] versus 16 [30%]; p =0.01), and other mobile wireless devices (42 [72%] versus 19 [35%]; p <0.001) than geriatric caregivers. They also more frequently expected technologies to improve their own quality of life ( p =0.009), increase their feelings of being effective as a caregiver ( p =0.02), and save time ( p =0.003). Regardless of age, a majority of caregivers (67 [62%]) endorsed the potential benefit of caregiving technologies in preventing burnout. Conclusions: Most caregivers have high access to and use of technology. Geriatric and nongeriatric caregivers were receptive to technology-based tools to help with their caregiving roles. Although nongeriatric caregivers expected to derive more benefit from such tools, both groups believed that caregiving technologies could reduce burden.

This study's aims were to describe the spirituality of depressed elderly psychiatric inpatients and to examine associations among spirituality, depression, and quality of life (QOL). Forty-five persons participated. Most reported frequent, stable spiritual practices and experiencing spiritual comfort and guidance. Some reported spiritual distress and changes in spirituality. During hospitalization, participants demonstrated increased spiritual well-being (SWB) and peacefulness, and reduced hopelessness, worthlessness, and guilt. Positive associations were found between SWB and QOL and negative associations between SWB and depression.

AbstractObjective The high level of stress associated with caring for others with medical conditions has been recognized for some time. Reducing caregiver stress can improve caregiver quality of life as well as improve the care they provide to loved ones. This systematic review assesses the effectiveness of internet-based interventions to decrease caregiver stress.Materials and methods A comprehensive literature search of Ovid MEDLINE (1946–2013), Embase (1988–2013), PsycINFO (1987–2013), and CINAHL was conducted using terms related to caregiver and internet-based interventions. Internet-based interventions involving informal caregivers in an open-label or randomized controlled trial setting were included. A pair of raters independently reviewed all published abstracts. Data regarding participants, interventions, and outcomes were extracted and, for randomized trials, methodology quality was also reviewed.Results Eight open-label trials met the review criteria: three showed positive benefit in reducing caregiver stress, four were partially positive (some outcomes positive, others negative), and one was a negative study. Sixteen randomized trials met the review criteria: six showed positive benefit, five were partially positive, and five were negative. There were no clear patterns as to the variables (such as study duration and complexity of intervention) associated with better outcomes, although earlier studies typically had more negative outcomes.Discussion Internet-based interventions were mostly effective in reducing aspects of caregiver stress and improving their well-being. Further studies to assess outcomes for caregivers and their recipients’ health, different technology delivery methods, and the cost of such interventions are needed.

AbstractObjectiveThe aim of this randomized controlled trial for patients with advanced cancer receiving radiation therapy was to determine the effect of a multidisciplinary intervention on spiritual quality of life (QOL) at the end of the intervention (week 4) and at two follow‐up time points (weeks 26 and 52).MethodsOne hundred thirty‐one persons were randomized to either the intervention or control (forms only) groups. The intervention included six 90‐min in‐person sessions based on the physical, emotion, social, and spiritual domains of QOL. Three sessions included the spiritual component. Caregivers were present for four sessions, one which included a spiritual component. Ten follow‐up phone calls were made to the patients in the intervention group during the 6‐month follow‐up period. Patients completed the Functional Assessment of Cancer Therapy: General Scale, the Linear Analog Self‐Assessment which includes an assessment of spiritual QOL, and the Functional Assessment of Chronic Illness Therapy‐Spiritual Well‐Being (FACIT‐Sp) at enrollment, and weeks 4, 27, and 52.ResultsFollowing the intervention, the intervention group demonstrated improved spiritual QOL on the FACIT‐Sp, whereas the spiritual QOL of the control group decreased, resulting in significant mean changes between groups (total score: 1.7 vs. −2.9; p < 0.01; meaning/peace subscale: 1.0 vs. −3.5; p < 0.01; faith subscale: 3.1 vs. −1.7; p = 0.04).ConclusionsThe results indicate that a multidisciplinary intervention which includes a spiritual component can maintain the spiritual QOL of patients with advanced cancer during radiation therapy. Copyright © 2013 John Wiley & Sons, Ltd.

Background— The increasing prevalence of heart failure (HF) and high associated costs have spurred investigation of factors leading to adverse outcomes in patients with HF. Studies to date report inconsistent evidence on the link between depression and outcomes with only limited data on emergency department and outpatient visits. Methods and Results— Olmsted, Dodge, and Fillmore county, Minnesota residents with HF were prospectively recruited between October 2007 and December 2010 and completed a 1-time 9-item Patient Health Questionnaire for depression categorized as: none to minimal (Patient Health Questionnaire score, 0–4), mild (5–9), or moderate to severe (≥10). Andersen-Gill models were used to determine whether depression predicted hospitalizations and emergency department visits, whereas negative binomial regression models explored the association of depression with outpatient visits. Cox proportional hazards regression characterized the relationship between depression and all-cause mortality. Among 402 patients with HF (mean age, 73±13 years; 58% men), 15% had moderate to severe depression, 26% mild, and 59% none to minimal depression. During a mean follow-up of 1.6 years, 781 hospitalizations, 1000 emergency department visits, 15 515 outpatient visits, and 74 deaths occurred. After adjustment, moderate to severe depression was associated with nearly a 2-fold increased risk of hospitalization (hazard ratio, 1.79; 95% confidence interval, 1.30–2.47) and emergency department visits (hazard ratio, 1.83; 95% confidence interval, 1.34–2.50), a modest increase in outpatient visits (rate ratio, 1.20; 95% confidence interval, 1.00–1.45), and a 4-fold increase in all-cause mortality (hazard ratio, 4.06; 95% confidence interval, 2.35–7.01). Conclusions— In this prospective cohort study, depression independently predicted an increase in the use of healthcare resources and mortality. Greater recognition and management of depression in HF may optimize clinical outcomes and resource utilization.

Fatigue is the problematic symptom identified by patients with cancer. However, fatigue has not been widely examined in caregivers of patients with cancer. In this study, 131 caregivers of patients diagnosed with advanced stage cancer and actively receiving radiotherapy reported experiencing the most difficulties with fatigue (mean 46.9; on a 0-100 scale, with a 10-point difference having clinical meaning) at baseline and at a 6-month follow-up (mean 48.3). This is in sharp contrast to other domains of quality of life and functioning being rated in the 60s, 70s and 80s by the caregivers of patients with cancer. Given the level of fatigue reported by the caregivers of patients with cancer, if confirmed by other investigators in larger and more diverse samples, interventions targeting caregiver fatigue should be explored.

Background/Aim: Despite existing diagnostic criteria for Charles Bonnet syndrome (CBS), clinical manifestations vary greatly. We examined the clinical course and mortality of patients diagnosed with CBS. Methods: We conducted a retrospective chart review of patients with CBS. We collected demographic and clinical information and medical burden scores. Kaplan-Meier mortality curves were compared using log-rank test. Cox proportional hazard model was used for multivariate analysis and hazard ratio (HR). Mortality was compared to expected mortality from Minnesota population. Results: Seventy-seven patients with CBS had a mean age of 79.5 (standard deviation ± 13.0) and were predominantly Caucasian (97%) and female (73%). In all, 20 (26%) subsequently developed a dementia syndrome, most often Lewy body. A total of 46 (60%) deaths occurred with an average follow-up time of 33.0 months. Characteristics associated with mortality included older age (75-84 [HR 3.34, P = .029], >85 [HR 4.58, P = .007]) and renal disease (HR 3.39 with 95% confidence interval 1.31-8.80, P = .012). Medical burden scores were not associated with overall mortality. Mortality was high compared to Minnesota population ( P < .0001). Conclusions: A large proportion of patients with CBS developed dementia, and there was a high mortality rate associated with older age and renal disease. Medical burden was not associated with mortality.