Search

Objective The majority of scales to measure family member distress in dementia are designed for community settings and do not capture the unique burdens of the nursing home (NH) environment. We report the psychometric properties of a new Family Distress in Advanced Dementia Scale for use in the NH setting. Design, Setting, Participants Cross-sectional questionnaire of 130 family member health care proxies of NH residents with advanced dementia in 31 Boston-area NHs. Methods Thirty-one initial items were evaluated, measuring the frequency over the past 3 months of sources of distress. Exploratory factor analysis identified domains of distress; Cronbach's alpha was computed for each domain. Associations between the domains and other measures were evaluated using Pearson correlation coefficients, including measures of depression (PHQ-9), satisfaction with care (Satisfaction with Care at the End-of-Life in Dementia [SWC-EOLD]), and caregiver burden (Zarit Burden Interview short version). Results Factor analysis suggested 3 domains: emotional distress (9 items), dementia preparedness (5 items), and NH relations (7 items). Cronbach's alpha coefficients were 0.82, 0.75, and 0.83 respectively. The PHQ-9 correlated most strongly with the emotional distress factor (r = 0.34), the SWC-EOWD correlated most strongly with the NH relations factor (r = 0.35), as did the Zarit Burden Scale (r = 0.50). Conclusions The Family Distress in Advanced Dementia Scale encompasses 3 domains of distress. This scale represents a much needed tool to assess distress among family members of NH residents with advanced dementia and provides a metric to evaluate interventions in the population. [ABSTRACT FROM AUTHOR]

Introduction: Although survivorship care recommendations exist, there is limited evidence about current practices and patient preferences. Methods: A cross-sectional survey was completed by survivors of lymphoma, head and neck, and gastrointestinal cancers at an academic cancer center. The survey was designed to capture patients' reports of receipt of survivorship care planning and their attitudes, preferences, and perceived needs regarding content and timing of cancer survivorship care information. Elements of survivorship care were based on the Institute of Medicine recommendations, literature review, and clinical experience. Results: Eighty-five survivors completed the survey (response rate, 81%). More than 75% reported receiving a follow-up plan or appointment schedule, a monitoring plan for scans and blood tests, information about short- and long-term adverse effects, and a detailed treatment summary. These elements were reported as desired by more than 90% of responders. Approximately 40% of these elements were only verbally provided. Although more than 70% described not receiving information about employment, smoking cessation, sexual health, genetic counseling, fertility, or financial resources, these elements were not reported as desired. However, “strategies to cope with the fear of recurrence” was most often omitted, yet desired by most respondents. Survivors' preferences regarding optimal timing for information varied depending on the element. Conclusions: Our study suggests that cancer survivorship care planning is heterogeneous and may not need to be comprehensive, but rather tailored to individual survivors' needs. Providers must assess patient needs early and continue to revisit them during the cancer care continuum. [ABSTRACT FROM AUTHOR]