BackgroundPatient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end–points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13–24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention.MethodsA three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14–25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14–24 years.ResultStage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people’s cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments.ConclusionCollaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive.
ObjectivesIn many countries, minority ethnic groups report poorer care in patient surveys. This could be because they get worse care or because they respond differently to such surveys. We conducted an experiment to determine whether South Asian people in England rate simulated GP consultations the same or differently from White British people. If these groups rate consultations similarly when viewing identical simulated consultations, it would be more likely that the lower scores reported by minority ethnic groups in real surveys reflect real differences in quality of care.DesignExperimental vignette study. Trained fieldworkers completed computer-assisted personal interviews during which participants rated 3 video recordings of simulated GP–patient consultations, using 5 communication items from the English GP Patient Survey. Consultations were shown in a random order, selected from a pool of 16.SettingGeographically confined areas of ∼130 households (output areas) in England, selected using proportional systematic sampling.Participants564 White British and 564 Pakistani adults recruited using an in-home face-to-face approach.Main outcome measureMean differences in communication score (on a scale of 0–100) between White British and Pakistani participants, estimated from linear regression.ResultsPakistani participants, on average, scored consultations 9.8 points higher than White British participants (95% CI 8.0 to 11.7, p<0.001) when viewing the same consultations. When adjusted for age, gender, deprivation, self-rated health and video, the difference increased to 11.0 points (95% CI 8.5 to 13.6, p<0.001). The largest differences were seen when participants were older (>55) and where communication was scripted to be poor.ConclusionsSubstantial differences in ratings were found between groups, with Pakistani respondents giving higher scores than White British respondents to videos showing the same care. Our findings suggest that the lower scores reported by Pakistani patients in national surveys represent genuinely worse experiences of communication compared to the White British majority.
ABSTRACT. In this paper a secure communication method is proposed, based on left invertibility of output-quantized dynamical systems. The sender uses an output-quantized linear system with a feedback function to encode messages, which are sequences of inputs of the system. So left invertibility property enables the receiver to recover the messages. The secret key is formed by the system's parameters, including the feedback function. The use of quantization makes the cryptographic system work exactly, and without asymptotic estimates. Simulations of encoding-decoding procedure and results about security of the method are finally shown.
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