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Purpose: Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers.Methods: We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care.Results: Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English- and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia.Conclusions: Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care. [ABSTRACT FROM AUTHOR]

To survey continence specialists (CSs) about their assessment practice including their use of quality of life (QoL) information, perceived barriers, benefits and training needs. Cross-sectional national postal survey of 624 practicing CSs in the UK. The questionnaire included open and closed questions relating to assessment practice. Completed questionnaires were returned by 299 (49%) CSs. Although 80% routinely assessed QoL, fewer than 54% demonstrated awareness of published questionnaires. The majority used structured questions (41%) many of which were non-standardised single items (26%) or locally developed questionnaires (19%). Only 22% used standardised patient-completed questionnaires such as the King’s Health Questionnaire and the Incontinence Quality of Life questionnaire. Perceived assessment barriers included the availability of appropriate questionnaires, patient disability, limited guidance, resources and time. Of those routinely assessing QoL, 77% wanted more support; the most useful media cited being the internet, followed by professional guidance and training courses. Although QoL measurement is highly valued, there was wide variation in assessment practice with few adopting standardised approaches. Most CSs require greater guidance and support that takes account of their diverse needs. Familiar assessment barriers exist which the use of web-based information, in association with professional guidance might help overcome. Clear mechanisms are required to direct standardised and appropriate assessment practice. [ABSTRACT FROM AUTHOR]