Consent and assent to participate in research from people with dementia.

Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the capacity to provide this informed consent. The rationale for assessing the assent or dissent of vulnerable individuals and obtaining informed consent by authorized representatives is discussed. Practical guidelines for recruitment of and data collection from people in the middle or late stage of dementia are proposed. These guidelines were used by research assistants in a minimal risk study.

Special care facility compared with traditional environments for dementia care: a longitudinal study of quality of life.

OBJECTIVES: To compare the effect of a specialized care facility (SCF) on quality of life (QoL) for residents with middle- to late-stage dementia over a 1-year period with residence in traditional institutional facilities. DESIGN: A prospective, matched-group design with assessments of QoL every 3 months for 1 year. SETTING: Twenty-four long-term care centers and four designated assisted living environments in an urban center in western Canada. PARTICIPANTS: One hundred eighty-five residents with Global Deterioration Scores of 5 or greater were enrolled: 62 in the intervention SCF group and 123 in the traditional institutional facilities groups. INTERVENTION: The SCF is a 60-bed purpose-built facility with 10 people living in six bungalows. The facility followed an ecologic model of care that is responsive to the unique interplay of each person and the environment. This model encompasses a vision of long-term care that is more comfortable, more like home, and offers more choice, meaningful activity, and privacy than traditional settings. MEASUREMENTS: QoL outcomes were assessed using the Brief Cognitive Rating Scale, Functional Assessment Staging, Cohen-Mansfield Agitation Inventory, Pleasant Events Scale-Alzheimer's disease, Multidimensional Observation Scale of Elderly Subjects, and Apparent Affect Rating Scale. RESULTS: The intervening SCF group demonstrated less decline in activities of daily living, more sustained interest in the environment, and less negative affect than residents in the traditional institutional facilities. There were no differences between groups in concentration, memory, orientation, depression, or social withdrawal. CONCLUSION: The present study suggests that QoL for adults with middle- to late-stage dementia is the same or better in a purpose-built and staffed SCF than in traditional institutional settings.

Quality of life in sleep disorders.

Quality of life is a major outcome variable in choosing and evaluating treatment alternatives for sleep disorders. However, the number of well validated and sufficiently responsive quality of life measures for use with this population is limited. The SF-36, Nottingham Health Profile (NHP) and Sickness Impact Profile (SIP) are the most frequently used generic measures. The Functional Outcomes of Sleep Questionnaire (FOSQ) and Sleep Apnoea Quality of Life Index (SAQLI) are useful as condition/disease specific measures. However there are not yet specific measures in common use for other sleep disorders. Results across the sleep disorders that have been studied, primarily sleep apnea, narcolepsy, restless legs and insomnia, have consistently shown poorer quality of life than population norms prior to treatment, particularly in those dimensions related to sleep, energy and fatigue. Before treatment scorespes typically are of similar magnitude to those found among individuals with other chronic diseases such as hypertension and chronic obstructive pulmonary disease. With treatment quality of life scores may or may not improve to the level of population norms, suggesting that currently available treatments may not fully reverse the effects of the common sleep disorders.

Workplace violence in Alberta and British Columbia hospitals.

Workplace violence is a significant and widespread public health concern among health care workers, including nurses. With growing awareness of how practice environments influence patient outcomes and the retention of health professionals, it is timely to consider the impact of workplace violence in hospitals. Registered nurses in Alberta and British Columbia, Canada were surveyed on their experiences of violence in the workplace over the last five shifts. Our results suggest that nurses are experiencing many incidences of violence in a given work week, particularly in the emergency, psychiatric, and medical-surgical settings. Most violent acts are perpetrated by patients, but there is also a significant portion of violence and abuse committed by hospital co-workers, particularly emotional abuse and sexual harassment. Our results also indicate that the majority of workplace violence is not reported. We suggest that using the Broken Windows theory might be a useful tool to conceptualize why workplace violence occurs, and that this framework be used to begin to develop new violence prevention policies and strategies.

Major depressive disorder and health care costs in multiple sclerosis.

OBJECTIVE: Multiple Sclerosis (MS) is associated with elevated levels of depressive symptoms and an elevated frequency of depressive disorders. Depressive disorders, in general, are associated with substantial direct and indirect economic costs, and have been shown to increase the costs associated with the management of medical conditions in a variety of clinical settings. However, the impact of depressive disorders on costs associated with MS have not been evaluated. The objective of this study was to evaluate this association. METHODS: The Composite International Diagnostic Interview (CIDI) was used to identify subjects with major depressive disorder in a sample who had earlier been selected for a broader economic evaluation of the costs associated with MS. Costs were measured in two ways: retrospectively (by questionnaire covering a 2-year period) and prospectively (using a 6-month diary). The proportion of subjects reporting any costs and the proportion exceeding various cost thresholds were calculated in subjects with and without lifetime major depression. These proportions were compared using exact statistical tests and confidence intervals. Non-parametric (rank sum) tests were used to compare median costs. RESULTS: Of 136 subjects, 31 had a lifetime history of major depression. MS-related expenses evaluated retrospectively (e.g., house and vehicle alterations and purchases) did not differ depending on major depression status. In the prospective analysis, subjects with lifetime major depression were more likely to purchase vitamins, herbs, and naturopathic remedies (p < 0.01) and more likely to incur costs associated with utilization of services provided by alternative practitioners (p = 0.04). Other differences (e.g., in mental health care, medical specialists, general practitioner visits) were not observed. CONCLUSIONS: Contrary to expectation, this study did not find increased direct medical costs in persons with comorbid major depressive disorder and multiple sclerosis. Persons with comorbid MS and (lifetime) major depression did not incur greater costs or utilize more services. The Canadian health care system is guided by principles of universality and is publicly funded and administered, however, the lack of an impact of major depression on utilization may reflect limited access to services. The lack of an association between costs and major depression may or may not be generalizable to health care systems in other countries.

Measurement properties of the calgary sleep apnea quality of life index.

Sleep apnea patients were studied three times prior to and 4 wk after a trial of nasal continuous positive airway pressure to determine the measurement properties of the Calgary Sleep Apnea Quality of Life Index (SAQLI), a disease-specific quality of life questionnaire. All patients completed the Medical Outcome Survey Short Form (SF-36), the Ferrans and Powers Quality of Life Index, and a global assessment of quality of life before and after treatment. The SAQLI was found to have a very high responsiveness index of 1.9 and an effect size of 1.1, which was much greater than the domains of the SF-36 and the FPQLI. There were statistically significant longitudinal correlations (range: 0.24 to 0.54) between the SAQLI and seven of the SF-36 domains in a pattern that was predicted beforehand and which demonstrated the validity of the SAQLI as an evaluative instrument. The SAQLI also had a range of correlations at baseline with the SF-36 (range: 0.36 to 0.71), the Epworth Sleepiness Scale (-0.26), and the FPQLI (0.29 to 0.66), and with a global rating of quality of life (0.61). The SAQLI had a high reliability coefficient of 0.92 on testing and retesting at 2 wk. We conclude that the SAQLI has excellent measurement properties for an evaluative instrument, and beginning evidence of validity as a discriminative index. It measures components of quality of life that are important to sleep apnea patients, and will be an important outcome measure in clinical trials.