Further explorations of illness uncertainty: Carer’s experiences of Parkinson’s disease

Objective: Dominant models of illness uncertainty define uncertainty as ‘an inability to determine the meaning of illness-related events’. Recent research has shown patient uncertainty to be multidimensional encompassing personal issues indirectly affected by illness. The nature of carer uncertainty has yet to be fully explored. The present study aimed to investigate the nature of illness uncertainty in the carers of patients with Parkinson’s disease (PD). Design: Eighteen carers of a spouse with PD participated in semi-structured interviews. Transcripts were thematically analysed, statements were coded as uncertain if they reflected ‘a lack of certainty, or a state of limited knowledge, understanding or worry regarding an existing or future outcome’. Results: The domains of uncertainty expressed by carers closely fitted the five domain framework of patient uncertainty: symptoms and prognosis, medical management, self-management, social functioning and impact. An additional ‘carer-role’ domain was identified. Conclusions: Carer uncertainty about PD went beyond issues directly related to the illness. The findings have implications for research into uncertainty suggesting that widely used measures may not be accurately capturing the nature of carer uncertainty about chronic illness. The breadth of uncertainty reported has implications for the provision of appropriate support to improve caregiver well-being

Patient Uncertainty Questionnaire-Rheumatology (PUQ-R): development and validation of a new patient-reported outcome instrument for systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) in a mixed methods study

Background An in-depth qualitative exploration of uncertainty in systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) led to the development of a five-domain conceptual framework of patient uncertainty in these two conditions. The purpose of this study was to develop and evaluate a new patient-reported outcome (PRO) instrument for patient uncertainty in SLE and RA on the basis of this empirically developed conceptual framework. Methods Cognitive debriefing interviews were conducted to pre-test the initial items generated on the basis of the preliminary qualitative exploration of patient uncertainty in SLE and RA. Two separate field tests were conducted in five hospital sites to evaluate the measurement properties of the new instrument; the first to identify and form scales, and the second to assess measurement properties of the final version in an independent sample. Psychometric evaluation was conducted in line with the Rasch Measurement Theory (RMT), examining the extent to which sample to scale targeting was satisfactory, measurement scales were constructed effectively and the sample was measured successfully. Traditional psychometric techniques were also used to provide complementary analyses best understood by clinicians. Results Pre-testing supported the relevance, acceptability and comprehensibility of the initial items. Findings indicated that the Patient Uncertainty Questionnaire for Rheumatology PUQ-R instrument fulfilled the expectations of RMT to a large extent (including person separation index 0.73 – 0.91). The PUQ-R comprises 49 items across five scales; symptoms and flares (14 items), medication (11 items), trust in doctor (8 items), self-management (6 items) and impact (10 items) which further displayed excellent measurement properties as assessed against the traditional psychometric criteria (including Cronbach’s alpha 0.82 – 0.93). Conclusion The PUQ-R has been developed and evaluated specifically for patients with SLE and RA. By quantifying uncertainty, the PUQ-R has the potential to support evidence-based management programmes and research

Quantifying beliefs regarding telehealth: Development of the Whole Systems Demonstrator Service User Technology Acceptability Questionnaire

Introduction: Telehealth (TH) is a potential solution to the increased incidence of chronic illness in an ageing population. The extent to which older people and users with chronic conditions accept and adhere to using assistive technologies is a potential barrier to mainstreaming the service. This study reports the development and validation of the Whole Systems Demonstrator (WSD) Service User Technology Acceptability Questionnaire (SUTAQ). / Methods: Questionnaires measuring the acceptability of TH, quality of life, well-being and psychological processes were completed by 478 users of TH. The 22 acceptability items were subject to principal components analysis (PCA) to determine sub-scales. Scale scores, relationships between scales and other patient-reported outcome measures (PROMs), and group differences on scales were utilised to check the reliability and validity of the measure. / Results: PCAs of SUTAQ items produced six TH acceptability scales: enhanced care, increased accessibility, privacy and discomfort, care personnel concerns, kit as substitution and satisfaction. Significant correlations within these beliefs and between these scales and additional PROMs were coherent, and the SUTAQ sub-scales were able to predict those more likely to refuse TH. / Discussion: The SUTAQ is an instrument that can be used to measure user beliefs about the acceptability of TH, and has the ability to discriminate between groups and predict individual differences in beliefs and behaviour. Measuring acceptability beliefs of TH users can provide valuable information to direct and target provision of services to increase uptake and maintain use of TH

Red cell distribution width correlates with fatigue levels in a diverse group of patients with systemic lupus erythematosus irrespective of anaemia status

Objectives: Fatigue remains a debilitating feature of systemic lupus erythematosus (SLE). Although in some cases this may be the result of intercurrent fibromyalgia, mood disorder or untreated metabolic syndrome, in many cases the cause is unclear. The aim of this study was to investigate the relationship between fatigue and red cell distribution width (RDW), a measure of variability in erythrocyte size and volume. Method: A total of 225 patients were recruited from three clinics in England and Australia. Patients completed the Functional Assessment of Chronic Illness Therapy (FACIT) Fatigue Score or 12-item Short Form survey (SF-12) to measure fatigue, which was compared with RDW and haemoglobin. In a subgroup of 72 patients, markers of disease activity were also assessed for correlation with fatigue using univariate and multivariate analysis with fatigue as the dependent variable. Results: In all three groups, significant correlations between fatigue and RDW were observed (p<0.001; p=0.02; p<0.001 respectively) and this was preserved in multivariate analysis. There was no correlation between fatigue and haemoglobin in two groups (with the correlation between RDW and fatigue remaining significant in non-anaemic patients in the third group). In subgroup analysis, fatigue was not associated with any measures of disease activity. Conclusions: We report a reproducible, statistically significant association between RDW and fatigue levels in a diverse population of patients with SLE. The findings of this study raise the possibility of a potential novel biological basis for fatigue in those in whom there is a lack of an alternate explanation

Non-contact ultrasonic measurements of the elastic constants of magnetic materials

Ultrasonic testing using contacting transducers such as quartz or PZT is well established. However, standard measurement techniques used require physical contact of the sample and ultrasonic transducer and some sort of couplant between the two. With this configuration there is a possibility of damaging the sample, transducer or bond during testing, thermal cycling, or removal of the transducer. We present results taken using recent advances in non-contact methods of ultrasound generation and detection using electromagnetic acoustic transducers (EMATs), which offer some significant benefits over contact ultrasonic techniques. Circumventing the need for couplant removes the possibility of contaminating the system, which is an issue for some material property measurements, and allows easier measurements over a wider range of temperatures. An automated data analysis system has been developed which allows the velocity of sound in the sample, and hence the elastic constants, to be determined to a high accuracy. This technique is illustrated using measurements of the alloy Gd(64)Sc(36)

Uncertainty in Systemic Lupus Erythematosus (SLE) and Rheumatoid Arthritis (RA): Development and Validation of a New Patient Reported Instrument

Background: Patient uncertainty is considered to be an inherent part of the illness experience, and particularly relevant in unpredictable conditions; however, it has not been thoroughly investigated in systemic lupus erythematosus (SLE) or rheumatoid arthritis (RA) and no appropriate instrument is available for its quantification. This thesis presents mixed-method studies aiming to address this gap in the literature. Phase-1: Qualitative interviews with 32 patients and 8 health care professionals were conducted in order to conceptualise patient uncertainty in SLE and RA. These findings were used to develop a new self-report instrument for patient uncertainty. Items of the new instrument were qualitatively tested through cognitive debriefing interviews. Phase-2: A field test was set up to evaluate and revise the newly developed instrument psychometrically, using the modern technique of Rasch analysis in a sample of 388 patients. The instrument was subsequently evaluated using traditional psychometrics tests. Phase-3 (part-1): A second field test was set up to evaluate the psychometric properties of the second draft of the new instrument using a combination of modern and traditional psychometric techniques in an independent sample of 279 patients. The final draft of the instrument consisted of five scales; symptoms and flares, medication, trust in doctor, self-management and impact. Phase-3 (part-2): The construct validity of the new instrument, as well as the contribution of the five patient uncertainty scales to SLE and RA patient outcomes, including treatment adherence, mood and health related quality of life, were explored. Statistical tests, including correlational analyses and multiple linear regressions, were used for this exploration. Conclusions: This thesis offers a conceptual framework and a self-report instrument for the assessment of patient uncertainty in SLE and RA. The findings offer implications for the role of patient uncertainty in these conditions and demonstrate the importance of comprehensive methodology in assessing such constructs