Background antipsychotic drugs are regularly prescribed as first-line treatment for neuropsychiatric symptoms in persons with dementia although guidelines clearly prioritise non-pharmacological interventions. Objective we investigated a person-centred care approach, which has been successfully evaluated in nursing homes in the UK, and adapted it to German conditions. Design a 2-armed 12-month cluster-randomised controlled trial. Setting nursing homes in East, North and West Germany. Methods all prescribing physicians from both study arms received medication reviews for individual patients and were offered access to 2 h of continuing medical education. Nursing homes in the intervention group received educational interventions on person-centred care and a continuous supervision programme. Primary outcome: proportion of residents receiving at least one antipsychotic prescription after 12 months of follow-up. Secondary outcomes: quality of life, agitated behaviour, falls and fall-related medical attention, a health economics evaluation and a process evaluation. Results the study was conducted in 37 nursing homes with n = 1,153 residents (intervention group: n = 493; control group: n = 660). The proportion of residents with at least one antipsychotic medication changed after 12 months from 44.6% to 44.8% in the intervention group and from 39.8 to 33.3% in the control group. After 12 months, the difference in the prevalence was 11.4% between the intervention and control groups (95% confidence interval: 0.9–21.9; P = 0.033); odds ratio: 1.621 (95% confidence interval: 1.038–2.532). Conclusions the implementation of a proven person-centred care approach adapted to national conditions did not reduce antipsychotic prescriptions in German nursing homes. Trial registration ClinicalTrials.gov NCT02295462.

Background The concept of cancer identity is gaining attention as more individuals are living with cancer as a chronic illness. Research is limited, and results suggest that a self-identity as “cancer patient” rather than a “cancer survivor” is associated with depression and lower health-related quality of life (HRQL). We aimed to identify factors associated with patient identity and investigate the associations between patient identity and treatment, health care use, psychosocial distress, and HRQL. Methods We used data from the population-based CAncEr Survivorship: A multi-Regional (CAESAR) study. Breast, colorectal, and prostate cancer survivors diagnosed during 1994–2004 completed a postal survey on patient identity, HRQL, psychological distress, and health care use in 2009–2011. We calculated odds ratios and the 95% confidence interval of having a patient identity. Analyses were adjusted for age, sex, education, and cancer stage, where appropriate. Results Of the 6057 respondents, colorectal cancer survivors (25%) were least likely to consider themselves patients, and prostate cancer survivors (36%) the most likely. Being male, younger age, comorbidity, higher cancer stage, and disease recurrence were associated with patient identity. Treatment was associated with patient identity, except among female colorectal cancer survivors. Having a patient identity was associated with higher health care use within the past 12 months. Survivors who still consider themselves patients were more likely to be depressed and reported significantly lower HRQL. Conclusions A significant proportion of cancer survivors still consider themselves patients five to 15 years postdiagnosis. Sensitivity to individuals’ self-identity should be considered when exploring their cancer experience.

BackgroundThe Quality of Life in Alzheimer’s disease scale (QoL-AD) is a widely used Health Related Quality of Life (HRQoL) instrument. However, studies investigating the instrument’s inter-rater reliability (IRR) are missing. This study aimed to determine the item distribution and IRR of the German proxy version of the QoL-AD (13 Items) and a nursing home-specific instrument version (QoL-AD NH, 15 Items).MethodsThe instruments were applied to 73 people with dementia living in eight nursing homes in Germany. Individuals with dementia were assessed two times by blinded proxy raters. The IRR analyses were based on methodological criteria of the quality appraisal tool for studies of diagnostic reliability (QAREL), the COSMIN group and the single-measure Intra-Class Correlation Coefficient (ICC) for absolute agreement ≥0.70.ResultsAll items for both instrument versions demonstrated acceptable item difficulty, with the exception of one item (QoL-AD proxy). The IRR was moderate for the QoL-AD (ICC: 0.65) and insufficient for the QoL-AD NH (ICC: 0.18). The additional computation of the average measure ICC for two proxy-raters demonstrated a strong IRR (ICC: 0.79) for the QoL-AD and a weak IRR for the QoL-AD NH (ICC: 0.31). The detailed analysis of the IRR for each item underpinned the need for the further development of both instruments.ConclusionsThe unsatisfactory IRRs for both instruments highlight the need for the development of a user guide including general instructions for instrument application as well as definitions and examples reflecting item meaning. Priority should be given to the development of reliable proxy-person versions of both instruments.Trial registrationClinicalTrials.gov: NCT02295462, Date of registration: 11–20-2014.

Dementia is a chronic and currently incurable syndrome. Therefore, quality of life (QoL) is a major goal when caring for people with dementia (Gibson et al., 2010) and a major outcome in dementia research (Moniz-Cook et al., 2008). The measurement of QoL, especially proxy-rating, is challenging because of the proxy-perspective (Pickard and Knight, 2005), reliability (Dichter et al., 2016), validity (O'Rourke et al., 2015), and responsiveness (Perales et al., 2013). Probably due to these challenges, it has not been possible to show positive effects for QoL in almost all non-pharmacological interventions for people with dementia (Cooper et al., 2012). One recommended (Moniz-Cook et al., 2008) and frequently used instrument is the Quality of Life in Alzheimer's Disease scale (QoL-AD), which was originally developed in the US for community-dwelling people with dementia. The QoL-AD consists of 13 items based on a 4-point Likert scale ranging from “1”=poor to “4”=excellent (Logsdon et al., 1999). The original instrument has been adapted for people living in nursing homes (NH) by Edelmann et al. (2005).