Plain English summaryHealth technology appraisal involves reviewing the findings from clinical trials and economic data to produce guidance on how health technology should be used. This task is carried out by appraisal committees in NICE. One of the several ways in which patients can feed their views into these committees is via a written patient statement. We asked nine committee members about what difference the information from patients makes to their decision-making. The Committee members reported that written patient statements offer a different perspective when reviewing the clinical and economic data. This can have a profound impact when a committee draws conclusions based solely on the data, which may not reflect the reality of patients’ lives. The patients’ and carers’ input provides meaning to the data, ‘bringing the numbers to life’. It identifies if the technology has any wider impacts than what’s been reported in the clinical trial, and also if the trial has measured what’s important to patients. We conclude that the written patient statement adds value to the decision-making process by helping Committee members to make sense of the clinical and economic data-it makes them look at the evidence ‘in a different light’. Patients’ stories are very effective in this context, because they have the power to communicate and to challenge Committee members’ assumptions. Understanding this difference between analysing research evidence and drawing on patients’ insights is important in thinking about what’s needed in a written patient statement and the best way to obtain it.Abstract Background Health technology appraisal involves reviewing clinical and economic data to inform guidance on the use of technology. In England this task is carried out by appraisal committees within the National Institute for Health and Care Excellence (NICE). Patients are not committee members as they have a vested interest in the outcome, but one of the several ways they are involved is through submitting a written patient statement, which is considered by the committee during its deliberations. We aimed to find out how the written patient statement adds value to the decision-making process by exploring how it is used in practice. Methods Semi-structured interviews were conducted with nine members of NICE appraisal committees. The interviews were transcribed and analysed thematically. We drew on published evidence of the impact of patient involvement on clinical research and our experience of supporting organisations to produce written patient statements to analyse the findings. Results Committee members reported that written patient statements offer a different perspective when evaluating clinical and economic data. This can have a profound impact when a committee draws conclusions based on data that may not reflect the reality of the patient experience. Information from patients and carers also provides context and meaning to the data, by explaining its real-life implications. It identifies wider impacts of a technology that may no...

BackgroundThere are an estimated 125,000 deaf people in the UK who use British Sign Language (BSL) as their main form of communication, but there are no child mental health screening instruments that are accessible to deaf children whose first or main language is BSL (or to deaf adults reporting on children). This study sought to develop a new BSL translation of a commonly used mental health screening tool (Strengths and Difficulties Questionnaire, SDQ), with versions available for deaf young people (aged 11–16 years), parents and teachers. The psychometric properties of this translation, and its validity for use with the deaf signing UK population, were also investigated.Objectives(1) To translate the SDQ into BSL; and (2) to use this new version with a cohort of deaf children, deaf parents and deaf teachers fluent in BSL across England, and validate it against a ‘gold standard’ clinical interview.MethodsThis study was split into two broad phases: translation and validation. The BSL SDQ was developed using a rigorous translation/back-translation methodology with additional checks, and we have defined high-quality standards for the translation of written/oral to visual languages. We compared all three versions of the SDQ (deaf parent, deaf teacher and deaf young person) with a gold standard clinical interview by child mental health clinicians experienced in working with deaf children. We also carried out a range of reliability and validity checks.ResultsThe SDQ was successfully translated using a careful methodology that took into account the linguistic and cultural aspects of translating a written/verbal language to a visual one. We recruited 144 deaf young people (aged 11–16 years), 191 deaf parents of a child aged either 4–10 or 11–16 years (the child could be hearing or deaf) and 77 deaf teachers and teaching assistants. We sought deaf people whose main or preferred language was BSL. We also recruited hearing participants to aid cross-validation. We found that the test–retest reliability, factor analysis and internal consistency of the three new scales were broadly similar to those of other translated versions of the SDQ. We also found that using the established multi-informant SDQ scoring algorithm there was good sensitivity (76%) and specificity (73%) against the gold standard clinical interview assessment. The SDQ was successfully validated and can now be used in clinical practice and research. Factor analysis suggests that the instrument is good for screening for mental health problems but not for the identification of specific disorders, and so should be used as a screening instrument. It will also enable outcomes to be monitored.ConclusionsA BSL version of the SDQ can now be used for national studies screening for mental health problems in deaf children. This will help us better understand the needs of deaf children and will enable earlier detection of mental health difficulties. It can also be used within clinical settings to monitor outcomes.Future workFuture work may focus on using the SDQ in epidemiological research, and developing new assessment instruments for deaf children to improve assessment methods in the deaf population.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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One barrier to continued growth of palliative care is the shortage of qualified hospice and palliative care clinicians. Advanced practice registered nurses are an important part of the interdisciplinary palliative care team, and strengthening this workforce can help alleviate the shortage of clinicians and improve access to quality palliative care. However, there is a dearth of information about this workforce. The purpose of this study was to describe the current hospice and palliative care advanced practice registered nurse workforce, their educational needs, and barriers to practice. The investigators distributed an online survey between October 2016 and January 2017 and received 556 responses. Sixty-three percent had more than 20 years of experience as a registered nurse yet were newer to practice as a hospice and palliative care advanced practice nurse, with 53.8% having 0 to 5 years of experience in this role. Forty-one percent indicated that their traditional graduate educational preparation was insufficient in preparing them for their specialty role. Most indicated that they did not experience barriers to practice in their current position, but 7.3% identified significant issues. These results can inform future professional, educational, and regulatory efforts to support and develop the palliative care advanced practice registered nurse workforce.

Background: The Graduate Nurse Education (GNE) Demonstration seeks to increase the number of advanced practice registered nurses (APRNs) in clinical practice. With the overall increase in APRN programs and, particularly, enrollment in nurse practitioner (NP) programs, there is growing competition among students to secure quality clinical precepting experiences. Purpose: This study describes NPs' and physicians' experiences with precepting APRN students within the Greater Philadelphia GNE Consortium. Methods: This was a cross-sectional descriptive survey of 1,021 NP and physician preceptors who provided clinical practicum experiences for at least one of the nine Greater Philadelphia GNE Consortium schools. Results: Differences between NP and physician precepting experiences regarding the importance of various factors in their decisions to precept were explored. Both NP and physician preceptors provide clinical practicum experiences to APRN students because they enjoy doing so. However, they differ regarding what they find important in their decisions to precept such as having protected time to precept and educational opportunities. Implications for practice: As universities work to recruit quality preceptors, they should consider tailoring their approach based on the preceptor's clinical role. In addition, schools located within the same region should consider streamlining administrative processes to form sustaining and productive clinical partnerships.