National service evaluation of the quality of care for children and young people with congenital adrenal hyperplasia in the United Kingdom: survey responses from patients and clinicians.

INTRODUCTION: Quantifying differences in service provision for children and young people (CYP) living with Congenital Adrenal Hyperplasia (CAH) across the United Kingdom. METHODS: A national service evaluation using online questionnaires circulated to patients and clinicians from secondary and tertiary UK centres managing CYP with CAH, and via the "Living with CAH" support group mailing list. RESULTS: Total of 195 responses relating to patients aged 0-20 years attending 33 clinics (43 patients, 152 carers), as well as 34 clinicians from 18 trusts working across the 33 clinics. Only 12% of clinicians were 'completely satisfied' with the service provided, compared to 68% of carers and 76% of patients. Whilst 94% of clinicians reported providing formal training to families with CAH, over 80% of both patients and carers reported not attending what they considered formal training. Appetite for further training was higher in carers (86%) than patients (55%), although further 'unsure' responses suggested formal training sessions would likely be well attended. Access to psychological services was difficult for 44% of clinicians. Biochemical monitoring of treatment was broadly in keeping with international guidelines, with 67% of clinicians reporting regular use of dried blood spots, and 12% regular urinary steroid metabolites. CONCLUSION: While there is overall good satisfaction with care provision among patients and carers with CAH in the UK, extra resources addressing the psychological and educational needs about the disease and its management would benefit patients and carers. Improved access to allied health professionals and psychologists will help support families and improve patient outcomes.

Cervical Cancer Prognosis and Diagnosis Using Electrical Impedance Spectroscopy.

Electrical impedance spectroscopy (EIS) has been used as an adjunct to colposcopy for cervical cancer diagnosis for many years, Currently, the template match method is employed for EIS measurements analysis, where the measured EIS spectra are compared with the templates generated from three-dimensional finite element (FE) models of cancerous and non-cancerous cervical tissue, and the matches between the measured EIS spectra and the templates are then used to derive a score that indicates the association strength of the measured EIS to the High-Grade Cervical Intraepithelial Neoplasia (HG CIN). These FE models can be viewed as the computational versions of the associated physical tissue models. In this paper, the problem is revisited with an objective to develop a new method for EIS data analysis that might reveal the relationship between the change in the tissue structure due to disease and the change in the measured spectrum. This could provide us with important information to understand the histopathological mechanism that underpins the EIS-based HG CIN diagnostic decision making and the prognostic value of EIS for cervical cancer diagnosis. A further objective is to develop an alternative EIS data processing method for HG CIN detection that does not rely on physical models of tissues so as to facilitate extending the EIS technique to new medical diagnostic applications where the template spectra are not available. An EIS data-driven method was developed in this paper to achieve the above objectives, where the EIS data analysis for cervical cancer diagnosis and prognosis were formulated as the classification problems and a Cole model-based spectrum curve fitting approach was proposed to extract features from EIS readings for classification. Machine learning techniques were then used to build classification models with the selected features for cervical cancer diagnosis and evaluation of the prognostic value of the measured EIS. The interpretable classification models were developed with real EIS data sets, which enable us to associate the changes in the observed EIS and the risk of being HG CIN or developing HG CIN with the changes in tissue structure due to disease. The developed classification models were used for HG CIN detection and evaluation of the prognostic value of EIS and the results demonstrated the effectiveness of the developed method. The method developed is of long-term benefit for EIS-based cervical cancer diagnosis and, in conjunction with standard colposcopy, there is the potential for the developed method to provide a more effective and efficient patient management strategy for clinic practice.