Stage 1 Development of a Patient Reported Experience Measure (PREM) for Chronic Obstructive Pulmonary Disease (COPD)

The study aimed to explore patients’ experience of living with COPD and their perspective of their community health care for COPD to extract affective responses in order to develop potential items for a patient reported experience measure (PREM) for Chronic Obstructive Pulmonary Disease (COPD). Qualitative face-face interviews were conducted, in the community, with 64 patients with COPD recruited from General Practices and Breath-Easy community groups in the Outer North East, East and City, London and Essex, UK. A two phase analysis of the qualitative data was conducted to identify themes arising from patients’ description of living with COPD and their perceptions of their community health care and subsequently the affective responses underlying the themes raised by patients, which gave emotional colour to the themes, bringing the thematic analysis closer to the subjective patient experience. Five themes were identified from the interview data: ‘Journey to diagnosis’; ‘Smoking’; ‘Usual care’; ‘My everyday life’; and ‘Exacerbations’. Twenty affective responses were identified and categorised as either ‘negative’, ‘positive’ or ‘bivalent’. ‘Frustration’, a negative affective response was prevalent in four themes. ‘Gratitude’, ‘hope’ and ‘happiness/enjoyment’ were among the more positive responses more prevalent across several themes. By conducting a novel two-way analysis (thematic and affective) it was possible to identify themes and affective responses that were aligned to those themes. This enabled the development of 38 COPD specific experience items to take forward for further testing including item reduction and validity and reliability in the next stage of the PREM development

Assessment of the quality of measures of child oral health-related quality of life

Background Several measures of oral health-related quality of life have been developed for children. The most frequently used are the Child Perceptions Questionnaire (CPQ), the Child Oral Impacts on Daily Performances (C-OIDP) and the Child Oral Health Impact Profile (COHIP). The aim of this study was to assess the methodological quality of the development and testing of these three measures. Methods A systematic search strategy was used to identify eligible studies published up to December 2012, using both MEDLINE and Web of Science. Titles and abstracts were read independently by two investigators and full papers retrieved where the inclusion criteria were met. Data were extracted by two teams of two investigators using a piloted protocol. The data were used to describe the development of the measures and their use against existing criteria. The methodological quality and measurement properties of the measures were assessed using standards proposed by the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) group. Results The search strategy yielded 653 papers, of which 417 were duplicates. Following analysis of the abstracts, 119 papers met the inclusion criteria. The majority of papers reported cross-sectional studies (n = 117) with three of longitudinal design. Fifteen studies which had used the original version of the measures in their original language were included in the COSMIN analysis. The most frequently used measure was the CPQ. Reliability and construct validity appear to be adequate for all three measures. Children were not fully involved in item generation which may compromise their content validity. Internal consistency was measured using classic test theory with no evidence of modern psychometric techniques being used to test unidimensionality of the measures included in the COSMIN analysis. Conclusion The three measures evaluated appear to be able to discriminate between groups. CPQ has been most widely tested and several versions are available. COHIP employed a rigorous development strategy but has been tested in fewer populations. C-OIDP is shorter and has been used successfully in epidemiological studies. Further testing using modern psychometric techniques such as item response theory is recommended. Future developments should also focus on the development of measures which can evaluate longitudinal change

The concept of individualised care

© Springer International Publishing AG, part of Springer Nature 2019. The conceptual investigation of individualised care includes the meaning attributed to the term, the uses of the concept in nursing literature and the various proposed definitions of the concept found in the nursing literature. This chapter outlines the utilisation of the individualised care concept in nursing science literature but also in some other health disciplines. Furthermore, the development of the concept in regard to its different meanings and definitions used over time will be examined