Clinical features, treatments, their impact, and quality of life for Myasthenia Gravis patients in Australia.

This survey provides an update on the experience of Myasthenia Gravis (MG) patients in Australia. Items were drawn from the 2011 Australian Survey and a 2019 US survey allowing for comparative discussion of survey findings. Patients were recruited through the Myasthenia Alliance Australia. Following consent, patients completed an online survey using REDCap software. Questions included demographics, clinical features, treatment side-effects and quality of life (QOL) scales. Samples for completion of survey sections ranged from N = 242-280 representing a power level of over 80%. Female and seronegative patients reported a significantly greater symptom load, earlier disease onset, longer time to diagnosis, more MG exacerbations, treatment side-effects, and poorer QOL. For exacerbation management there was a higher rate of oral corticosteroid use (66%), a lower use of Intravenous Immunoglobulin (IVIg, 47%) and particularly, Therapeutic Plasma Exchange (TPE, 4.5%) within this sample. Although steroid induced side-effects were rarer (9-34%), a comparatively high use of corticosteroids was reported for current and overall treatments including those for MG crises (52-83%). Common treatment side-effects reported by 57-85% of patients, included fatigue, weight gain, a decrease in the ability to fight infections, gastrointestinal symptoms, and muscle weakness. The impact of MG on daily activities and QOL was considerable, but those who had a thymectomy reported better QOL. The survey identified areas for potential practice improvement in MG treatments (corticosteroids, IVIg, TPE), particularly for exacerbation management, and review is recommended. Further research on gender and antibody status differentials regarding clinical features is required.

Preliminary development of recommendations for the inclusion of patient-reported outcome measures in clinical quality registries.

BACKGROUND: Clinical quality registries (CQRs) monitor compliance against optimal practice and provide feedback to the clinical community and wider stakeholder groups. Despite a number of CQRs having incorporated the patient perspective to support the evaluation of healthcare delivery, no recommendations for inclusion of patient-reported outcome measures (PROMs) in CQRs exist. The aim of this study was to develop a core set of recommendations for PROMs inclusion of in CQRs. METHOD: An online two-round Delphi survey was performed among CQR data custodians, quality of life researchers, biostatisticians and clinicians largely recruited in Australia. A list of statements for the recommendations was identified from a literature and survey of the Australian registries conducted in 2019. The statements were grouped into the following domains: rationale, setting, ethics, instrument, administration, data management, statistical methods, and feedback and reporting. Eighteen experts were invited to participate, 11 agreed to undertake the first online survey (round 1). Of these, nine experts completed the online survey for round 2. RESULTS: From 117 statements presented to the Delphi panel in round 1, a total of 72 recommendations (55 from round 1 and 17 from round 2) with median importance (MI) ≥ 7 and disagreement index (DI) < 1 were proposed for inclusion into the final draft set and were reviewed by the project team. Recommendations were refined for clarity and to read as stand-alone statements. Ten overlapped conceptually and, therefore, were merged to reduce repetition. The final 62 recommendations were sent for review to the panel members for their feedback, which was incorporated into the final set. CONCLUSION: This is the first study to develop preliminary recommendations for PROMs inclusion in CQRs. Recommendations for PROMs implementation are critically important for registries to assure meaningful PROMs data capture, use, interpretation, and reporting to improve health outcomes and healthcare value.

A Delphi study to develop indicators of cancer patient experience for quality improvement.

PURPOSE: The purpose of this study was to develop prioritised indicators to measure cancer patient experience and thus guide quality improvement in the delivery of patient care. METHODS: A Delphi study, consisting of two surveys and three workshops, was employed to gather expert opinions on the most important indicators to measure. Survey participants were 149 health professionals, academics/technical experts and consumers. The first survey was based on a literature review which identified 105 elements of care within 14 domains of patient experience. These were rated on a 7-point Likert scale, with '1' representing high importance. Elements with mean ratings between 1.0 and 2.0 were retained for the second survey. The 43 least-important elements were omitted, four elements were revised and nine new elements added. Consensus was defined as at least 70% of participants rating an element '1' or '2'. Multivariate and cluster analyses were used to develop 20 draft indicators, which were presented to 51 experts to refine and prioritise at the three workshops. RESULTS: All elements in the second survey were rated '1' or '2' by 81% of participants. Workshop participants agreed strongly on the four most important indicators: coordinated care, access to care, timeliness of the first treatment, and communication. Other indicators considered highly important were follow-up care for survivors; timeliness of diagnosis; information relating to side effects, pain and medication; comprehensibility of information provided to patients; and needs assessment. CONCLUSIONS: Experts identified priorities with a high level of consensus, providing a rigorous foundation for developing prioritised indicators of quality in cancer patient experience.

Younger Onset Dementia.

This literature review focused on the experience, care, and service requirements of people with younger onset dementia. Systematic searches of 10 relevant bibliographic databases and a rigorous examination of the literature from nonacademic sources were undertaken. Searches identified 304 articles assessed for relevance and level of evidence, of which 74% were academic literature. The review identified the need for (1) more timely and accurate diagnosis and increased support immediately following diagnosis; (2) more individually tailored services addressing life cycle issues; (3) examination of the service needs of those living alone; (4) more systematic evaluation of services and programs; (5) further examination of service utilization, costs of illness, and cost effectiveness; and (6) current Australian clinical surveys to estimate prevalence, incidence, and survival rates. Although previous research has identified important service issues, there is a need for further studies with stronger research designs and consideration of the control of potentially confounding factors.

Question Prompt Lists in health consultations: A review.

OBJECTIVES: This review examines the use and effectiveness of Question Prompt Lists (QPL) as communication aids to enhance patient question asking, information provision to patients and patient participation in health and medical consultations. METHODS: A systematic search was undertaken to identify relevant literature concerning QPLs including academic databases, Google-based and snowball searching. Forty-two relevant studies reporting 50 interventions were identified. RESULTS: Although findings varied there was some evidence that a QPL endorsed by the physician increased total question asking. Using a QPL increased question asking concerning specific content areas (e.g. prognosis). There was some evidence that physicians provided more information during consultations. There were no consistent findings concerning effects on patient knowledge recall, anxiety and satisfaction or consultation time. Some interventions that increased question asking had longer consultation times. CONCLUSION: There is evidence that an appropriate QPL, endorsed by the physician and provided immediately before the consultation, may increase patient question asking and lead to more information being provided by the physician. PRACTICE IMPLICATIONS: There is increasing evidence to support QPL use in routine practice. Further trials might address the issues identified including an assessment of QPL optimal length and QPL adaptation for cultural and special needs groups.

The revised faecal incontinence scale: a clinical validation of a new, short measure for assessment and outcomes evaluation.

BACKGROUND: The patient perspective on fecal incontinence can only be captured through the use of participant-reported measures. There are few psychometric evaluations of such measures, and these evaluations have reported some problems with existing measures. OBJECTIVE: This study clinically evaluated the new Revised Faecal Incontinence Scale which was developed to provide a short, psychometrically sound measure for epidemiological and evaluative research. DESIGN: A sample of consecutive patients was recruited and administered a questionnaire pre and posttreatment (Continence Advising, Physiotherapy and Surgery). SETTINGS: The study was conducted at 6 incontinence clinics across Australia. PATIENTS: : The sample included 61 people with fecal incontinence at baseline and 38 at follow-up. MAIN OUTCOME MEASURES: Measures included the Revised Faecal Incontinence Scale, the Wexner Continence Scale, and the St Mark's Incontinence Score. Additionally, patient and clinician ratings of severity and improvement were collected. RESULTS: The internal reliability of the Revised Faecal Incontinence Scale had a Cronbach's α = 0.78 compared with 0.65 for both the Wexner and St Mark's scales. Test-retest reliabilities were 0.80, 0.74, and 0.68. All 3 instruments were similarly responsive to change at follow-up. Correlations with other fecal incontinence measures were high and significant. LIMITATIONS: The small sample size, particularly at posttreatment, provides limitations concerning generalizability and subanalyses that could be undertaken. CONCLUSIONS: The Revised Faecal Incontinence Scale possessed evaluative discrimination between different levels of incontinence severity. In this sample it had superior internal consistency and test-retest reliability to the Wexner and St Mark's Incontinence Scales. It was at least as responsive as the Wexner and St Mark's in detecting change in incontinence status following treatment. Although ongoing clinical validation is required, these findings suggest it is a short, reliable, and valid scale that could be considered for use by researchers, epidemiologists, and clinicians.