The Responsiveness, Content Validity, and Convergent Validity of the Measure Yourself Concerns and Wellbeing (MYCaW) Patient-Reported Outcome Measure

Objective Measure Yourself Concerns and Wellbeing (MYCaW) is a patient-centred questionnaire that allows cancer patients to identify and quantify the severity of their ‘Concerns’ and Wellbeing, as opposed to using a pre-determined list. MYCaW administration is brief and aids in prioritising treatment approaches. Our goal was to assess the convergent validity and responsiveness of MYCaW scores over time, the generalisability of the existing qualitative coding framework in different complementary and integrative healthcare settings and content validity. Methods Baseline and 6-week follow-up data (n=82) from MYCaW and FACIT-SpEx questionnaires were collected for a service evaluation of the ‘Living Well With The Impact of Cancer’ course at Penny Brohn Cancer Care. MYCaW construct validity was determined using Spearman's Rank Correlation test, and responsiveness indices assessed score changes over time. The existing qualitative coding framework was reviewed using a new dataset (n=158) and coverage of concern categories compared to items of existing outcome measures. Results Good correlation between MYCaW and FACIT-SpEx score changes were achieved (r= -0.57, p≥0.01). MYCaW Profile and Concern scores were highly responsive to change: SRM=1.02 and 1.08; effect size=1.26 and 1.22. MYCaW change scores showed the anticipated gradient of change according to clinically relevant degrees of change. Categories including ‘Spirituality’, ‘weight change’ and ‘practical concerns’ were added to the coding framework to improve generalisability. Conclusions MYCaW scores were highly responsive to change, allowing personalized patient outcomes to be quantified; the qualitative coding framework is generalisable across different oncology settings and has broader coverage of patient-identified concerns compared with existing cancer-related patient-reported outcome measures.

A review of dynamic Bayesian network techniques with applications in healthcare risk modelling

Coping with an ageing population is a major concern for healthcare organisations around the world. The average cost of hospital care is higher than social care for older and terminally ill patients. Moreover, the average cost of social care increases with the age of the patient. Therefore, it is important to make efficient and fair capacity planning which also incorporates patient centred outcomes. Predictive models can provide predictions which their accuracy can be understood and quantified. Predictive modelling can help patients and carers to get the appropriate support services, and allow clinical decision-makers to improve care quality and reduce the cost of inappropriate hospital and Accident and Emergency admissions. The aim of this study is to provide a review of modelling techniques and frameworks for predictive risk modelling of patients in hospital, based on routinely collected data such as the Hospital Episode Statistics database. A number of sub-problems can be considered such as Length-of-Stay and End-of-Life predictive modelling. The methodologies in the literature are mainly focused on addressing the problems using regression methods and Markov models, and the majority lack generalisability. In some cases, the robustness, accuracy and re-usability of predictive risk models have been shown to be improved using Machine Learning methods. Dynamic Bayesian Network techniques can represent complex correlations models and include small probabilities into the solution. The main focus of this study is to provide a review of major time-varying Dynamic Bayesian Network techniques with applications in healthcare predictive risk modelling.

Bevacizumab in NF2-related vestibular schwannomas: a nationally coordinated approach to delivery and prospective evaluation

Background: NF2 patients develop multiple nervous system tumors including bilateral vestibular schwannomas (VS). The tumors and their surgical treatment are associated with deafness, neurological disability, and mortality. Medical treatment with bevacizumab has been reported to reduce VS growth and to improve hearing. In addition to evaluating these effects, this study also aimed to determine other important consequences of treatment including patient-reported quality of life and the impact of treatment on surgical VS rates. Methods: Patients treated with bevacizumab underwent serial prospective MRI, audiology, clinical, CTCAE-4.0 adverse events, and NFTI-QOL quality-of-life assessments. Tumor volumetrics were classified according to the REiNs criteria and annual VS surgical rates reviewed. Results: Sixty-one patients (59% male), median age 25 years (range, 10–57), were reviewed. Median follow-up was 23 months (range, 3–53). Partial volumetric tumor response (all tumors) was seen in 39% and 51% had stabilization of previously growing tumors. Age and pretreatment growth rate were predictors of response. Hearing was maintained or improved in 86% of assessable patients. Mean NFTI-QOL scores improved from 12.0 to 10.7 (P < .05). Hypertension was observed in 30% and proteinuria in 16%. Twelve treatment breaks occurred due to adverse events. The rates of VS surgery decreased after the introduction of bevacizumab. Conclusion: Treatment with bevacizumab in this large, UK-wide cohort decreased VS growth rates and improved hearing and quality of life. The potential risk of surgical iatrogenic damage was also reduced due to an associated reduction in VS surgical rates. Ongoing follow-up of this cohort will determine the long-term benefits and risks of bevacizumab treatment.

Interaction Rituals and Jumbled Emotions Among “Relative Strangers”: Simulated Patient Work on a Trainee Complementary Therapy Practitioner Program

Learning games such as role-play (which we refer to as “simulated interaction rituals”) are commonly used as social tools to develop trainee health practitioners. However, the effect of such rituals on individual and group participant emotions has not been carefully studied. Using a heuristic approach, we explore the experiences of complementary therapy practitioner trainees (and their trainers) participating in a personal development course. Ten trainees and two tutors were interviewed, observational notes taken, and a secondary qualitative analysis undertaken. Participants and tutors described a medley of disparate emotional and moral responses to group rituals, conceptualized in this article as “jumbled emotions.” Such emotions required disentangling, and both trainees and staff perceived participating in unfamiliar rituals “with relative strangers” as challenging. Front of stage effects are frequently processed “backstage,” as rituals threaten social embarrassment and confusion. Concerns around emotional triggers, authenticity, and outcomes of rituals arise at the time, yet trainees can find ways to work through these issues in time.