Adaptation and content validation of measure yourself medical outcomes profile (MYMOP) for 7-11 year-old children.

BACKGROUND: The Measure Yourself Medical Outcome Profile (MYMOP) is an individualised tool designed for adults but used with children without any evidence of validation in this population. Individualised instruments are patient-specific rather than disease-specific and therefore can be applied across various health conditions. This study sought to adapt, and content validate the MYMOP for application in 7-11 year old children. METHODS: There were two main phases of the four iterations: expert consultation (three rounds) and interviews with child-parent pairs at the Outpatient clinics of a Children's Hospital. Thematic analysis was undertaken using an inductive, interpretative approach. RESULTS: Four paediatricians completed the first survey, five paediatricians participated in the focus group, and four paediatric health-related quality of life (HRQOL) research experts completed the second survey. Several changes were recommended to the MYMOP by the expert groups. Twenty-five children (17 general medicine, and 8 diabetes/endocrine clinic) aged 7-11 years completed the draft paediatric MYMOP (P-MYMOP) and were interviewed. Results demonstrated that the majority of participants were able to identify their own problems and activity limitations, and all participants understood the 7-point faces scale. Most parents and children perceived that the P-MYMOP would be useful to complete before clinic appointments. CONCLUSIONS: The P-MYMOP is the first content-validated generic individualised HRQOL measure for children 7-11 years old. Given that validation is an iterative process, further research to assess its feasibility, reliability, and construct validity is required.

A systematic review of randomised controlled trials evaluating the use of patient-reported outcome measures (PROMs).

BACKGROUND: Patient-reported outcome measures (PROMs) could play an important role in identifying patients' needs and goals in clinical encounters, improving communication and decision-making with clinicians, while making care more patient-centred. Comprehensive evidence that PROMS are an effective intervention is lacking in single randomised controlled trials (RCTs). METHODS: A systematic search was performed using controlled vocabulary related to the terms: clinical care setting and patient-reported outcome. English language studies were included if they were a RCT with a PROM as an intervention in a patient population. Included studies were analysed and their methodologic quality was appraised using the Cochrane Risk of Bias tool. The protocol was registered with PROSPERO (CRD42016034182). RESULTS: Of 4302 articles initially identified, 115 underwent full-text review resulting in 22 studies reporting on 25 comparisons. The majority of included studies were conducted in USA (11), among cancer patients (11), with adult participants only (20). Statistically significant and robust improvements were reported in the pre-specified outcomes of the process of care (2) and health care (3). Additionally, five, eight and three statistically significant but possibly non-robust findings were reported in the process of care, health and patient satisfaction outcomes, respectively. CONCLUSIONS: Overall, studies that compared PROM to standard care either reported a positive effect or were not powered to find pre-specified differences. There is justification for the use of a PROM as part of standard care, but further adequately powered studies on their use in different contexts are necessary for a more comprehensive evidence base.

Designing follow-up intervals.

When an examination is needed to determine if an event has occurred there will be a loss of efficiency in using the resulting interval-censored data instead of the exact event times. In designing follow-up intervals this loss for longer intervals needs to be weighed against extra visits required by shorter intervals. We obtain results to quantify this for the estimation of the median and mean survival and for covariates in parametric regression models with equally spaced examination times. Asymptotic information loss for the log-normal and Weibull distributions are similar when comparisons are made between corresponding members of the two families. For distributions with coefficients of variation of 50 per cent or more, a choice of interval from 0.25 to 0.7 times the median is recommended.

Autosomal dominant iridogoniodysgenesis: glaucoma management.

In a family of 55 people in seven generations 28 were known to be affected with autosomal dominant iridogoniodysgenesis. Their glaucoma was characterized by early onset of high intraocular pressures, lability of the pressure both with and without medical treatment, poor response to such treatment and resistance of the optic nerve head to damage even into early middle age. Among the surgical procedures undertaken, goniotomy was not successful but, oddly, iridencleisis was. All indications were that surgery could be delayed into adult life.

Autosomal dominant iridogoniodysgenesis: genetic features.

Twenty-two members of two families have been identified as being affected with iridogoniodysgenesis. The major clinical features of this disorder are mesodermal remnants in the iridociliary angle associated with abnormal angle vasculature, marked hypoplasia of the iris stroma and increased intraocular pressure leading to glaucoma. The involvement of the two eyes is remarkably symmetric. Pedigree analysis of the larger family provided firm evidence for regular autosomal dominant inheritance as the mechanism of genetic transmission.