Patient-reported measures of well-being in older multiple myeloma patients: use of secondary data source

Background!#!Changes in well-being of patients with multiple myeloma (MM) before and after diagnosis have not been quantified.!##!Aims!#!Explore the use of secondary data to examine the changes in the well-being of older patients with MM.!##!Methods!#!We used the Health and Retirement Study (HRS), linked to Medicare claims to identify older MM patients. We compared patient-reported measures (PRM), including physical impairment, sensory impairment, and patient experience (significant pain, self-rated health, depression) in the interviews before and after MM diagnosis using McNemar's test. We propensity-matched each MM patient to five HRS participants without MM diagnosis based on baseline characteristics. We compared the change in PRM between the MM patients and their matches.!##!Results!#!We identified 92 HRS patients with MM diagnosis (mean age = 74.6, SD = 8.4). Among the surviving patients, there was a decline in well-being across most measures, including ADL difficulty (23% to 40%, p value = 0.016), poor or fair self-rated health (38% to 61%, p value = 0.004), and depression (15% to 30%, p value = 0.021). Surviving patients reported worse health than participants without MM across most measures, including ADL difficulty (40% vs. 27%, p value = 0.04), significant pain (38% vs. 22%, p value = 0.01), and depression (29% vs. 11%, p value = 0.003).!##!Discussion!#!Secondary data were used to identify patients with MM diagnosis, and examine changes across multiple measures of well-being. MM diagnosis negatively affects several aspects of patients' well-being, and these declines are larger than those experienced by similar participants without MM.!##!Conclusion!#!The results of this study are valuable addition to understanding the experience of patients with MM, despite several data limitations

Insight Into the Posthospital Syndrome: A 3-Month Longitudinal Follow up on Geriatric Syndromes and Their Association With Functional Decline, Readmission, and Mortality

Background: Acute hospitalization may lead to posthospital syndrome, but no studies have investigated how this syndrome manifests and geriatric syndromes are often used as synonym. However, studies on longitudinal associations between syndromes and adverse outcomes are scarce. We aimed to analyze longitudinal associations between geriatric syndromes and functional decline (FD), readmission, and mortality.Methods: Prospective cohort study, including 401 acutely hospitalized patients (aged ≥ 70). We performed: (i) logistic regression analyses to assess associations between patterns of geriatric syndromes as they develop over time (between admission and 1 month postdischarge), and FD and readmission; (ii) generalized estimating equations to assess longitudinal associations between geriatric syndromes over five time points (admission, discharge, 1, 2, and 3 months postdischarge) and FD, mortality, and readmission at 3 months postdischarge.Results: After syndrome absent, syndrome present at both admission and 1 month postdischarge was most prevalent. Persistent patterns of apathy (odds ratio [OR] = 4.35, 95% confidence interval [CI] = 1.54-12.30), pain (OR = 3.26, 95% CI = 1.21-8.8), malnutrition (OR = 3.4, 95% CI = 1.35-8.56), mobility impairment (OR = 6.65, 95% CI = 1.98-22.38), and fear of falling (OR = 3.17, 95% CI = 1.25-8.02) were associated with FD. Developing cognitive impairment (OR = 6.40, 95% CI = 1.52-26.84), fatigue (OR = 4.71, 95% CI = 1.03-21.60), and fall risk (OR = 4.30, 95% CI = 1.21-16.57) postdischarge, was associated with readmission; however, only 4%-6% developed these syndromes. Over the course of five time points, mobility impairment, apathy, and incontinence were longitudinally associated with FD; apathy, malnutrition, fatigue, and fall risk with mortality; malnutrition with readmission.Conclusion: Most geriatric syndromes are present at admission and patients are likely to retain them postdischarge. Several geriatric syndromes are longitudinally associated with mortality and, particularly, persistently present syndromes place persons are at risk of FD. Although few persons develop syndromes postdischarge, those developing cognitive impairment, fatigue, and fall risk were at increased readmission risk.</p

Leveraging the Health and Retirement Study To Advance Palliative Care Research

Background: The critical need to expand and develop the palliative care evidence base was recently highlighted by the Journal of Palliative Medicine's series of articles describing the Research Priorities in Geriatric Palliative Care. The Health and Retirement Study (HRS) is uniquely positioned to address many priority areas of palliative care research. This nationally representative, ongoing, longitudinal study collects detailed survey data every 2 years, including demographics, health and functional characteristics, information on family and caregivers, and personal finances, and also conducts a proxy interview after each subject's death. The HRS can also be linked with Medicare claims data and many other data sources, e.g., U.S. Census, Dartmouth Atlas of Health Care. Setting: While the HRS offers innumerable research opportunities, these data are complex and limitations do exist. Therefore, we assembled an interdisciplinary group of investigators using the HRS for palliative care research to identify the key palliative care research gaps that may be amenable to study within the HRS and the strengths and weaknesses of the HRS for each of these topic areas. Conclusion: In this article we present the work of this group as a potential roadmap for investigators contemplating the use of HRS data for palliative care research.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/140117/1/jpm.2013.0648.pd

Validation of the Thai version of the family reported outcome measure (FROM-16)© to assess the impact of disease on the partner or family members of patients with cancer

© The Author(s). 2019Background: Cancer not only impairs a patient's physical and psychosocial functional behaviour, but also contributes to negative impact on family members' health related quality of life. Currently, there is an absence of a relevant tool in Thai with which to measure such impact. The aim of this study was to translate and validate the Family Reported Outcome Measure (FROM-16) in Thai cancer patients' family members. Methods: Thai version of FROM-16 was generated by interactive forward-backward translation process following standard guidelines. This was tested for psychometric properties including reliability and validity, namely content validity, concurrent validity, known group validity, internal consistency, exploratory and confirmatory factor analysis. Construct validity was examined by comparing the Thai FROM-16 version with the WHOQOL-BREF-THAI. Results: The internal consistency reliability was strong (Cronbach's alpha = 0.86). A Negative moderate correlation between the Thai FROM-16 and WHOQOL-BREF-THAI was observed (r = - 0.4545, p < 0.00), and known group validity was proved by a statistically significant higher score in family members with high burden of care and insufficient income. The factor analysis supported both 3-factor and 2-factor loading model with slight difference when compared with the original version. Conclusions: The Thai FROM-16 showed good reliability and validity in Thai family members of patients with cancer. A slight difference in factor analysis results compared to the original version could be due to cross-culture application.Peer reviewedFinal Published versio

Burden, coping, physical symptoms and psychological morbidity in caregivers of functionally dependent family members

Objectives: this study assessed burden, coping, physical symptoms and psychological morbidity in caregivers of functionally dependent family members. Methods: fifty family caregivers completed self-reported measures of burden, physical symptoms, psychological morbidity and coping strategies. Results: there was a significant negative correlation between coping strategies and the different clinical variables, as well as a significant positive correlation between coping strategies and duration of care. It appears that the stronger bond between caregiver and family member leads to a poorer use of adaptive coping strategies. It also appears that the deterioration of the relationship between them and the lower perceived self-efficacy are more prominente in caregivers of family members with cognitive impairment, indicating that caregivers with family members without cognitive impairment face fewer difficulties. Conclusion: these results emphasize the need for interventions to include coping strategies, since they are important in reducing caregivers’ burden, psychological morbidity and physical symptoms

Validity and reliability of the Arabic version of Activities of Daily Living (ADL)

Background. The Activity of Daily Living (ADL) is an instrument that screens elderly respondents for physical functioning and assesses whether they are dependent or independent in their daily activities. This study demonstrates a translation procedure and obtains the reliability and validity of a translated, Arabic ADL. Methods. The ADL was translated to Arabic through a forward translation method followed by a committee-consensual approach. The ADL and the Arabic Mini-Mental State Examination (AMMSE) were administered to an opportunistic sample of 354 Lebanese elderly living in nursing homes who did not have dementia. Results. Reliability split half measures, sensitivity, and negative predictive values were high across all dimensions of the ADL with the exception of feeding. There were non-significant differences on the scored ADL between the three age groups: young age, middle age and older old. In addition, a non-significant difference was found on the scored ADL between the high and low AMMSE scores. Conclusion. Overall, the translated ADL was consistent and valid measure for assessing daily activities in elderly nursing home residents. As it is quick and easy to use, the ADL in Arabic could help caregivers and doctors to prescribe appropriate physical exercise for elderly Arabic speaking patients

Alertness and visuospatial attention in clinical depression

<p>Abstract</p> <p>Background</p> <p>Cognitive deficits are a substantial burden in clinical depression. The present study considered dysfunction in the right-hemispheric attention network in depression, examining alertness and visuospatial attention.</p> <p>Methods</p> <p>Three computerized visuospatial attention tests and an alertness test were administered to 16 depressive patients and 16 matched healthy controls.</p> <p>Results</p> <p>Although no significant group effect was observed, alertness predicted reduced visuospatial performance in the left hemifield. Furthermore, sad mood showed a trend towards predicting left visual field omissions.</p> <p>Conclusions</p> <p>Decreased alertness may lead to lower left hemifield visuospatial attention; this mechanism may be responsible for a spatial bias to the right side in depression, even though treatment of depression and anxiety may reduce this cognitive deficit.</p

Design of the Advance Directives Cohort: a study of end-of-life decision-making focusing on Advance Directives

<p>Abstract</p> <p>Background</p> <p>ADs are documents in which one can state one's preferences concerning end-of-life care, aimed at making someone's wishes known in situations where he/she is not able to do so in another manner. There is still a lot unclear about ADs. We designed a study aimed at investigating the whole process from the formulating of an AD to its actual use at the end of life.</p> <p>Methods/Design</p> <p>The study has mixed methods: it's longitudinal, consisting of a quantitative cohort-study which provides a framework for predominantly qualitative sub-studies. The members of the cohort are persons owning an AD, recruited through two Dutch associations who provide the most common standard ADs in the Netherlands, the NVVE (Right to Die-NL), of which 5561 members participate, and the NPV (Dutch Patient Organisation), of which 1263 members participate. Both groups were compared to a sample of the Dutch general public. NVVE-respondents are more often single, higher educated and non-religious, while amongst NPV-respondents there are more Protestants compared to the Dutch public. They are sent a questionnaire every 1,5 year with a follow-up of at least 7,5 years. The response rate after the second round was 88% respectively 90% for the NVVE and NPV. Participants were asked if we were allowed to approach close-ones after their possible death in the future. In this way we can get insight in the actual use of ADs at the end of life, also by comparing our data to that from the Longitudinal Aging Study Amsterdam, whose respondents generally do not have an AD.</p> <p>Discussion</p> <p>The cohort is representative for people with an AD as is required to study the main research questions. The longitudinal nature of the study as well as the use of qualitative methods makes it has a broad scope, focusing on the whole course of decision-making involving ADs. It is possible to compare the end of life between patients with and without an AD with the use of data from another cohort.</p

Hospitalizations during the last months of life of nursing home residents: a retrospective cohort study from Germany

BACKGROUND: To describe hospitalisations of nursing home (NH) residents in Germany during their last months of life. METHODS: Retrospective cohort study on 792 NH residents in the Rhine-Neckar region in South-West Germany, newly institutionalized in the year 2000, who died until the study end (December 2001). Baseline variables were derived from a standardized medical examination routinely conducted by the medical service of the health care insurance plans in Germany. Information on hospitalisations and deaths was extracted form records of the pertinent health insurance plans. RESULTS: NH residents who died after NH stay of more than 1 year spent 5.8% of their last year of life in hospitals. Relative time spent in hospitals increased from 5.2% twelve months before death (N = 139 persons) to 24.1% in their last week of life (N = 769 persons). No major differences could be observed concerning age, gender or duration of stay in NH. Overall, 229 persons (28.9%) died in hospital. Among these, the last hospital stay lasted less than 3 days for 76 persons (31.9%). Another 25 persons (3.2%) died within three days after hospital discharge. CONCLUSION: Our study indicates that proximity of death is the most important driver of health care utilization among NH residents. The relation of age or gender to health care expenditures seem to be weak once time to death is controlled for. Duration of NH stay does not markedly change rates of hospitalisation during the last months of life