Health-related quality of life: implications for critical care interventional studies and why we need to collaborate with patients.

Purpose of review: Health-related quality of life (HRQoL) is an important patient-reported outcome measure following critical illness. ‘Validated’ and professionally endorsed generic measures are widely used to evaluate critical care intervention and guide practice, policy and research. Although recognizing that they are ‘here to stay’, leading QoL researchers are beginning to question their ‘fitness for purpose’. It is therefore timely to review critiques of their limitations in the wider healthcare and social science literatures and to examine the implications for critical care research including, in particular, emerging interventional studies in which HRQoL is the primary outcome of interest. Recent findings: Generic HRQoL measures have provided important yet limited insights into HRQoL among survivors of critical illness. They are rarely developed or validated in collaboration with patients and cannot therefore be assumed to reflect their experiences and perspectives. Summary: Collaboration with patients is advocated in order to improve the interpretation and utility of such data. Failure to do so may result in important study effects being overlooked and the dismissal of potentially useful interventions.

Development and preliminary psychometric properties of the Care Experience Feedback Improvement Tool (CEFIT).

Objective To develop a structurally valid and reliable, yet brief measure of patient experience of hospital quality of care, the Care Experience Feedback Improvement Tool (CEFIT). Also, to examine aspects of utility of CEFIT. Background Measuring quality improvement at the clinical interface has become a necessary component of healthcare measurement and improvement plans, but the effectiveness of measuring such complexity is dependent on the purpose and utility of the instrument used. Methods CEFIT was designed from a theoretical model, derived from the literature and a content validity index (CVI) procedure. A telephone population surveyed 802 eligible participants (healthcare experience within the previous 12 months) to complete CEFIT. Internal consistency reliability was tested using Cronbach's α. Principal component analysis was conducted to examine the factor structure and determine structural validity. Quality criteria were applied to judge aspects of utility. Results CVI found a statistically significant proportion of agreement between patient and practitioner experts for CEFIT construction. 802 eligible participants answered the CEFIT questions. Cronbach's α coefficient for internal consistency indicated high reliability (0.78). Interitem (question) total correlations (0.28–0.73) were used to establish the final instrument. Principal component analysis identified one factor accounting for 57.3% variance. Quality critique rated CEFIT as fair for content validity, excellent for structural validity, good for cost, poor for acceptability and good for educational impact. Conclusions CEFIT offers a brief yet structurally sound measure of patient experience of quality of care. The briefness of the 5-item instrument arguably offers high utility in practice. Further studies are needed to explore the utility of CEFIT to provide a robust basis for feedback to local clinical teams and drive quality improvement in the provision of care experience for patients. Further development of aspects of utility is also required.

Construct and content validity of the Greek version of the birth satisfaction scale (G-BSS).

Background: ‘Birth Satisfaction’ is a term that encompasses a woman’s evaluation of her birth experience. The term includes factors such as her appraisal of the quality of care she received, a personal assessment of how she coped, and her reconstructions of what happened on that particular day. Her accounts may be accurate or skewed, yet correspond with her reality of how events unfolded. Objective: To evaluate properties of an instrument designed to measure birth satisfaction in a Greek population of postnatal women. Study design: We assessed factor structure, internal consistency, divergent validity and known-groups discriminant validity of the 30-item Greek Birth Satisfaction Scale – Long Form (30-item G-BSS-LF) and its revised version the 10-item Greek-BSS-Revised (10-item-G-BSS-R), using survey data collected in Athens. Participants: A convenience sample of healthy Greek postnatal women (n = 162) aged 22–46 years who had delivered between 34 and 42 weeks’ gestation. Results: The 30-item-G-BSS-LF performed poorly in terms of factor structure. The short-form 10-item-G-BSS-R performed well in terms of measurement replication of the English equivalent version as a multidimensional instrument. The short-form 10-item-G-BSS-R comprises three subscales which measure distinct but correlated domains of: (1) quality of care provision (4 items), (2) women’s personal attributes (2 items), and (3) stress experienced during labour (4 items). Key conclusions: The 10-item-G-BSS-R is a valid and reliable multidimensional psychometric instrument for measuring birth satisfaction in Greek postnatal women.

Health-Related Quality of Life for individuals with hepatitis C: A narrative review.

BACKGROUND The assessment of Health-Related Quality of Life (HRQoL) in hepatitis C (HCV) infected individuals continues to gain importance. However, rarely do reviews of this literature consider quantitative and qualitative accounts of HRQoL collectively, which only allows partial insight into the topic. This narrative review aims to address this gap in the literature. METHODS Literature searches were conducted using seven databases with two separate search strategies, and results assessed for eligibility using specific inclusion/exclusion criteria; a data extraction sheet was used to identify the dominant themes for each research paradigm which were then distilled to key findings to construct the narrative. RESULTS Quantitative investigation reveals a low HRQoL in individuals with HCV due to a complex multifactorial cause. During treatment for HCV, a further transient reduction is observed, followed by improvement if a sustained virological response is achieved. Qualitative data provide a recognisable voice to the everyday challenges experienced by individuals with HCV including insights into diagnosis and stigmatisation, contextualising how a reduced HRQoL is experienced day-to-day. Methodological limitations of these findings are then discussed. Much of the quantitative data has little relevance to current substance users as they are excluded from most trials, and appraisal of the qualitative literature reveals a marked difference in the lived experience of HCV infected current substance users and that of other HCV groups. CONCLUSION Concurrent analysis of quantitative and qualitative paradigms provides a deeper understanding of the true burden of HCV illness on HRQoL. Greater utilisation of qualitative research within international clinical guidelines is likely to be of benefit in identifying relevant HRQoL outcomes for substance users.