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 6 TH acceptability scales: enhanced care, increased accessibility, privacy & discomfort, care personnel concerns, kit as substitution, and satisfaction. Scale scores indicated, individuals with long term conditions held beliefs.Significant correlations within these beliefs and between these scales and additional PROMs were coherent and the SUTAQ subscales were able to predict those more likely to refuse TH.2 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 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. IntroductionA TH service allows healthcare professionals (HCP) to monitor patients' condition remotely and enables the patient to receive remote care from the comfort of their homes and where appropriate direct healthcare intervention in a timely manner. Patients are provided with kit appropriate to their condition that require users to measure vital signs (e.g. blood pressure, blood glucose, blood oxygen levels). These readings are electronically sent back to HCPs, who via computerised algorithms and professional experience, examine changes in the patients conditions and take action if necessary including direct response to the patient. (1)). The monitoring system defined above has been referred to with different terms within the literature (e.g. telecare, telemonitoring, telemedicine), but we use the term TH as defined within the Whole Systems Demonstrator (WSD) Telehealth study (3).TH aims to reduce the burden upon the healthcare system through reducing the rates of high cost services, reducing travel costs and identifying potential problems early before they become serious medical episodes (2). Furthermore from the patient perspective TH also can be perceived as increasing access to services, a means of reducing health concerns, and a tool enable them be more actively involved in their health care (3).One potential obst...

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Fatigue is one of the most complex and ill understood symptoms of chronic illness often reported as the number one complaint by patients with systemic lupus erythematosus (SLE). This paper aims to provide a comprehensive review of the literature on fatigue in SLE. A pool of 55 relevant articles was retrieved via electronic searches of six databases including MEDLINE, EMBASE, CINAHL, AMED, PsychINFO and PubMed. Fatigue in the studies reviewed was assessed by a range of self-report instruments, the content of which is varied. The results displayed a consensus on the high prevalence of fatigue in SLE, which is significantly higher when compared with controls. The aetiology of fatigue appears to be multifactorial. Disease activity is not always significantly associated with fatigue, in comparison with other secondary features of SLE and psychological variables. The literature is limited by the cross-sectional nature of most of the studies, which does not permit for any firm conclusion regarding the direction of causal relationships to be made. The high prevalence of fatigue in SLE emphasizes the need for further detailed prospective research to inform the understanding of its aetiology, course and management.

We recorded the usage of foot pumps during the post-operative period in 29 patients undergoing knee or hip arthroplasty and made 621 recordings. Effective utilisation of foot pumps was seen in 37.2% of cases. There was a gradual reduction in correct utilisation with each day that passed post-operatively (day 1, 60.4%; day 2, 48.8%; day 3, 28.8%; day 4, 21.4%; day 5, 23%). This gradual reduction was statistically significant (P=0.001) and mainly occurred between the second and third postoperative days. Effective usage was 60.2% overall at night and 36.4% during the day. Our results question the efficiency of foot pumps in deep venous thrombosis prophylaxis in the context of a true clinical setting.Résumé Nous avons étudié l'usage de pompes plantaires chez 29 malades pendant la période postopératoire aprés arthroplastie du genou ou de la hanche. Un total de 621 enregistrements a été fait. Une utilisation efficace des pompes a été notée dans 37.2% de cas. Il y avait une réduction graduelle de l'utilisation correcte au fil des jours post-opératoires (1er jour, 60.4%; 2e jour, 48.8%; 3e jour, 28.8%; 4e jour, 21.4%; 5e jour, 23%). Cette ré-duction graduelle était statistiquement significative (P=0.001) et s'est principalement produite entre les 2e et 3e jours postopératoires. L'usage efficace était de 60.2% la nuit et 36.4% dans la journée. Nos résultats questionnent l'efficacité des pompes plantaires dans la prophylaxie de la thrombose veineuse profonde dans un contexte clinique réel.

This is the accepted version of the paper.This version of the publication may differ from the final published version. Permanent repository link AbstractObjective: 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, selfmanagement, 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.

Introduction: Qualitative research on patient experiences in early-stage Parkinson's disease (PD) is limited. It is increasingly acknowledged that clinical outcome assessments used in trials do not fully capture the range of symptoms/ impacts that are meaningful to people with early-stage PD. We aimed to conceptualize the patient experience in early-stage PD and identify, from the patient perspective, those cardinal symptoms/impacts which might be more useful to measure in clinical trials. Methods: In a mixed-methods analysis, 50 people with early-stage PD and nine relatives were interviewed. Study design and results interpretation were led by a multidisciplinary

Background Myasthenia gravis (MG) is a chronic autoimmune neuromuscular disease, characterised by fluctuating muscle weakness which makes it challenging to assess symptom severity. Mixed methods psychometrics (MMP), which combines evidence from qualitative research and modern psychometrics, is a versatile approach to the development of patient-centred outcome measures (PCOM) in the context of rare disease. Our objective was to develop the MG Symptom patient-reported outcome (PRO) to assess key aspects of MG severity from the patient perspective. Methods We used MMP to develop a novel PRO instrument in a multi-step process. An initial conceptual model for MG patient experience was developed and expanded based on preliminary literature review and two waves of concept elicitation interviews with people with MG (Step 1). Based on this, the novel PRO instrument, the MG Symptoms PRO, was drafted. The draft instrument was refined by combining qualitative and quantitative data collected in a Phase 2 clinical study (Step 2). Results Findings from the literature review and concept elicitation interviews (n = 96) indicated that patient experience in MG includes proximal muscle weakness symptoms related to several body parts, along with muscle weakness fatigability and general fatigue. Then, a set of 42 items across five scales (ocular-, bulbar-, and respiratory muscle weakness, physical fatigue, and muscle weakness fatigability) was developed. Qualitative evidence endorsed its relevance, clarity, and ease of completion; quantitative analysis with Rasch measurement theory methods demonstrated strong measurement properties, including good targeting and high reliability. Classical test theory analyses showed adequate reliability of the instrument and mild to moderate correlations with other widely used MG-specific outcome measures. Conclusions The MG Symptoms PRO has potential to be used both to measure treatment benefit in clinical trials and monitor symptom severity in clinical practice. Its component scales were purposefully designed to stand alone, enhancing interpretability of scores given the heterogeneity of MG, and enabling modular use. Compared with existing MG PROs, it contains more detailed assessments of muscle weakness and muscle weakness fatigability symptoms, which are of key importance to people with MG. The MMP approach used may serve as a case study for developing PCOMs across rare disease indications.

Purpose The aim of this study is to illustrate an example application of Rach Measurement Theory (RMT) in the evaluation of patient-reported outcome (PRO) measures. RMT diagnostic methods were applied to evaluate the PROMIS® Depression items as part of a series of papers applying different psychometric paradigms in parallel to the same data. Methods RMT was used to examine scale-to-sample targeting, scale performance and sample measurement of two PROMIS depression item pools including respectively 28 and 51- items. Results Sub-optimal but improved targeting was displayed in the 51-item pool which covered 27% of the range of depression measured in the sample compared to only 15% in the 28-item bank, further reducing the sample percentage with lower depression not covered by the scale (28% Vs 34%). Satisfactory scale performance was observed by the 28-item bank with marginal item misfit. However, deviations from the RMT criteria in the 51-itempool were observed including: 9 reversed thresholds; 12 misfitting items and 12 item-pairs displaying dependency. Overall reliability was good for sets of items (Person Separation Index = 0.93 and 0.95), but sub-optimal sample measurement (17% Vs 19% fit residuals outside of the recommended range). Conclusions The RMT approach in this exercise provided evidence that compared to the 28-item bank, the extended 51-item version of the PROMIS depression, improved sample-to-scale targeting. However, targeting in the lower end of the concept of interest remained sub-optimal and scale performance deteriorated. There may be a need to improve the conceptual breadth of the construct under investigation to ensure the inclusion of items that capture the full range of the concept of interest for this context of use.