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 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. 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

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

Development of a gait module to complement the 12-item Multiple Sclerosis Walking Scale: a mixed methods study.

Background and objective: The 12-item Multiple Sclerosis Walking Scale (MSWS-12) is a patient-reported outcome instrument that quantifies the progressive loss of walking ability from the patient perspective. However, previous psychometric analyses indicated floor and ceiling effects across the multiple sclerosis severity spectrum. This study aimed to address floor effects by creating a gait module that can be used in conjunction with the MSWS-12 for better measurement of treatment benefit in the higher functioning multiple sclerosis population. Methods: We used a step-wise mixed methods study design, with relapsing-remitting multiple sclerosis patients (wave 1, Results: Thirty-seven walking ability concepts were identified, and a five-domain conceptual framework was created. Draft items were generated and refined with patient and neurologist input. Draft items covered gait-related concepts such as dragging, shuffling, limping, tripping and falling. Rasch measurement theory psychometric analysis indicated administering MSWS-12 plus gait items improved measurement precision in targeted populations with better walking ability. Conclusion: Study findings indicate that new gait items could improve sensitivity to detect clinical change in walking ability for higher functioning multiple sclerosis patients

Addressing the targeting range of the ABILHAND-56 in relapsing-remitting multiple sclerosis: A mixed methods psychometric study.

Background: ABILHAND, a manual ability patient-reported outcome instrument originally developed for stroke patients, has been used in multiple sclerosis clinical trials; however, psychometric analyses indicated the measure\u27s limited measurement range and precision in higher-functioning multiple sclerosis patients. Objective: The purpose of this study was to identify candidate items to expand the measurement range of the ABILHAND-56, thus improving its ability to detect differences in manual ability in higher-functioning multiple sclerosis patients. Methods: A step-wise mixed methods design strategy was used, comprising two waves of patient interviews, a combination of qualitative (concept elicitation and cognitive debriefing) and quantitative (Rasch measurement theory) analytic techniques, and consultation interviews with three clinical neurologists specializing in multiple sclerosis. Results: Original ABILHAND was well understood in this context of use. Eighty-two new manual ability concepts were identified. Draft supplementary items were generated and refined with patient and neurologist input. Rasch measurement theory psychometric analysis indicated supplementary items improved targeting to higher-functioning multiple sclerosis patients and measurement precision. The final pool of Early Multiple Sclerosis Manual Ability items comprises 20 items. Conclusion: The synthesis of qualitative and quantitative methods used in this study improves the ABILHAND content validity to more effectively identify manual ability changes in early multiple sclerosis and potentially help determine treatment effect in higher-functioning patients in clinical trials

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

Psychometric performance of the PROMIS® depression item bank: a comparison of the 28- and 51-item versions using Rasch measurement theory

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.Medicine, Faculty ofNon UBCOccupational Science and Occupational Therapy, Department ofReviewedFacult

Additional file 1: of 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

Patient Uncertainty Questionnaire - Rheumatology (PUQ-R). (PDF 425 kb

The FATIGUE-PRO:a new patient-reported outcome instrument to quantify fatigue in patients affected by systemic lupus erythematosus

OBJECTIVES: This study aimed to implement a patient-centred and evidence-based approach to develop a novel patient-reported outcome (PRO) instrument to measure fatigue in patients with SLE. METHODS: A three-step mixed methods psychometric (MMP) approach was followed. Steps comprised first draft item generation and review using interview data; evaluation and refinement of second draft items using mixed methods data, including interview and quantitative data from a phase 2 clinical study in SLE analysed using Rasch Measurement Theory (RMT) analysis; and evaluation of the final FATIGUE-PRO items using RMT and complementary Classical Test Theory (CTT) analyses. Guided by MMP criteria, a team of clinicians and outcome-measurement experts assessed evidence to inform instrument development. RESULTS: Step 1 culminated in 55 items (n = 39 patients interviewed). Their refinement in step 2 using mixed methods evidence led to the final FATIGUE-PRO instrument comprising 31 items across three scales of fatigue: physical fatigue (9 items), mental and cognitive fatigue (11 items) and susceptibility to fatigue (11 items). Qualitative (n = 43 patients) and quantitative (n = 106 patients) evidence strongly supported the scales’ content comprehensiveness and targeting, item quality and fit, conceptual uniqueness and appropriateness of the response scale. The FATIGUE-PRO further benefited from excellent reliability (RMT: 0.92–0.94 and CTT: 0.95–0.96) and supportive evidence of construct validity from assessments against other PROs. CONCLUSION: The conceptual advances, comprehensive coverage and strong psychometric properties of the FATIGUE-PRO will significantly advance the measurement and management of fatigue in SLE, both in clinical trials and routine practice. TRIAL REGISTRATION: ClinicalTrials.gov (https://clinicaltrials.gov), NCT0280476