Proxy reporting of health-related quality of life for people with dementia: a psychometric solution.

BACKGROUND: The growing move towards personalised health and social care systems means that every effort needs to be made to generate patient-reported outcome data. However, the deteriorating nature of dementia can make it difficult for people with dementia to complete self-reported questionnaires and it is often necessary to rely on a family member (proxy) to report on their behalf. There is little evidence to guide how the difference between self- and proxy-reports of health reported quality of life (HRQL) in dementia can be interpreted. METHODS: We recruited people with dementia and their family carers from 78 memory Assessment Services in the UK. We used Rasch measurement methods to investigate whether a HRQL questionnaire known as DEMQOL (self-reported by the person with dementia) and DEMQOL-Proxy (proxy-reported by a family carer) can be placed on the same continuum and whether a revised scoring algorithm, based on this equated model, can be developed that takes account of the relationship between self- and proxy-reports. RESULTS: In a sample of 1434 patients and 1030 carers, our findings supported equating DEMQOL/DEMQOL-Proxy (overall fit to the model; no mis-fitting items) after addressing specific issues (eight disordered items requiring re-scoring, four pairs locally dependent items, and five items showing DIF). Cross walk tables have been produced. CONCLUSIONS: We have established for the first time that DEMQOL and DEMQOL-Proxy can be placed on the same continuum and that patients and carer proxies are reporting on the same construct when they complete these questionnaires. Where possible both DEMQOL and DEMQOL-Proxy should still be administered together, using the improved scoring algorithm reported here. Where only DEMQOL-Proxy is available, the cross walk tables provide an estimate of DEMQOL for a particular person from their DEMQOL-Proxy score.

Is personality a determinant of patient satisfaction with hospital care?

OBJECTIVE: We investigated to what extent personality is associated with patient satisfaction with hospital care. A sizeable association with personality would render patient satisfaction invalid as an indicator of hospital care quality. DESIGN: Overall satisfaction and satisfaction with aspects of care were regressed on the Big Five dimensions of personality, controlled for patient characteristics as possible explanatory variables of observed associations. PARTICIPANTS: A total of 237 recently discharged inpatients aged 18-84 years (M = 50, SD = 17 years), 57% female, who were hospitalized for an average of 8 days. INSTRUMENTS: The Satisfaction with Hospital Care Questionnaire addressing 12 aspects of care ranging from admission procedures to discharge and aftercare and the Five-Factor Personality Inventory assessing a person's standing on Extraversion, Agreeableness, Conscientiousness, Emotional stability, and Autonomy. RESULTS: Agreeableness significantly predicted patient satisfaction in about half of the scales. After controlling for shared variance with age and educational level, the unique contribution of Agreeableness shrank to a maximum of 3-5% explained variance. When one outlier was dropped from the analysis, the contribution of Agreeableness was no longer statistically significant. CONCLUSION: Patient satisfaction seems only marginally associated with personality, at least at the level of the broad Big Five dimensions.

Reliability and validity of the Satisfaction with Hospital Care Questionnaire.

OBJECTIVE: To establish the psychometric properties of the Satisfaction with Hospital Care Questionnaire (SHCQ) for measuring patient satisfaction and evaluations of hospital care quality. DESIGN AND PARTICIPANTS: Patients (n = 275) and staff members (n = 83) of four hospital wards completed the 57-item SHCQ addressing 13 aspects of care. Staff members completed the SHCQ from the patient's perspective. The data were analyzed within the framework of generalizability theory. MAIN OUTCOME MEASURES: Generalizability coefficients (GCs) and standard errors of measurement (SEs). RESULTS: GCs indicating differentiation among patients with different overall levels of satisfaction (SHCQ mean scores) were high (> 0.90). GCs indicating differentiation among patients as to satisfaction with aspects of care (SHCQ scale scores) were generally satisfactory (> 0.75) to high. Patients agreed well on overall level of hospital care quality (GCs > 0.90) and differentiated reliably (GCs > 0.80) among aspects of care. No differentiation among wards was found with respect to quality of care. Patients and staff agreed to a considerable extent (0.78) on ranking the SHCQ items on care quality, but staff ratings were lower. Reliability and validity of patients' evaluations of quality of hospital care varied according to aspect of care. CONCLUSIONS: The SHCQ reliably establishes both patient satisfaction and overall quality of hospital care. Whereas patients' ratings may be too lenient, their ranking of the items on care quality appears to be valid, and is therefore suitable for monitoring and improving hospital care. Within scales, however, results should be interpreted more cautiously: for some items, patients cannot really tell the difference in quality of care.