ObjectiveDespite growing interest in children and young people’s (CYP) perspectives on healthcare, they continue to be excluded from many patient experience surveys. This study investigated the feasibility of, and additional information gained by, measuring CYP experiences of a recent hospital admission.DesignCross-sectional analysis of national survey data.SettingInpatients aged 8–15 years in eligible National Health Service hospitals, July–September 2014.Participants6204 parents/carers completed the parent section of the survey. The CYP section of the survey was completed by CYP themselves (n=3592), parents (n=849) or jointly (n=1763).Main outcome measuresPain relief, involvement, quality of staff communication, perceived safety, ward environment, overall experience.AnalysesSingle-measures intraclass correlations (ICCs) were used to assess the concordance between CYP and parent responses about the same inpatient episode. Multilevel logistic regression models, adjusted for individual characteristics, were used to compare the odds of positive responses when the CYP section of the survey was completed by parents, by CYP themselves or jointly.ResultsThe CYP section of the survey was completed independently by 57.8% of CYP. Agreement between CYP and parent responses was reasonably good for pain relief (ICC=0.61 (95% CI 0.58 to 0.63)) and overall experience (ICC=0.70 (95% CI 0.68 to 0.72)), but much lower for questions comparing professionals’ communication with CYP and with their parents (ICC range=0.28 (95% CI 0.24 to 0.32) to 0.51 (95% CI 0.47 to 0.54)). In the regression models, CYP were significantly less likely than parents to report feeling safe (adjusted OR (AOR)=0.54 (95% CI 0.38 to 0.76)), involvement in decisions (AOR=0.66 (95% CI 0.46 to 0.94)) or adequate privacy (AOR=0.68 (95% CI 0.52 to 0.89)).ConclusionsIncluding CYP (8–15 years) in patient experience surveys is feasible and enhances what is known from parents’ responses.

ObjectivesPatients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service provision.DesignCross-sectional questionnaire survey of patients with pancreatic cancer in the UK.SettingIndividuals at any stage along the care pathway were recruited via five National Health Service sites in the UK, and online, from January to June 2018.Participants274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274). Of 212 providing gender details, 82 were male and 130 were female. Ninety per cent (192/213) described themselves as White British.Primary outcome measuresExperiences of communication and information; involvement in treatment decisions; supportive care needs.ResultsCommunication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be. Supportive care needs were greatest in psychological and physical/daily living domains. 49% (108/221) of respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease.ConclusionsPatients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appears to be the biggest gap in care. Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.

The new surveys functioned well, with good evidence of validity, and were accessible to the SCD patient population, supporting their future use in assessing patient experience to inform service delivery and improvements in care quality.

With the greater need for specialist neonatal care in England over the last decade, increased attention has been given to developing and implementing quality measures to ensure that babies and their families receive the highest quality care. Patient experience is recognised as a key measure of quality, therefore it is essential to assess parents' experiences of neonatal services to understand how these can be improved. In this paper we detail findings from the second large scale survey of parents' experiences of neonatal care carried out in England in 2014, focusing on results that highlight aspects of family-centred care: information sharing; communication; support; and involvement. The results reveal great variations between individual units, as well as highlight key areas in which units could improve to provide family-centred care. This includes parents being able to speak to their doctor more, as well as receiving important information to understand their baby's condition, and about support services available. Positively, many parents felt they were able to visit their baby as much as they wanted and were involved in their day-today care, which are fundamental to parents forming a bond with their baby. The survey is a rich data source that provides neonatal units in England with results that allow them to focus improvement efforts on what matters most to those using their services. It also enables neonatal units to evaluate how they are performing on key standards of care, supporting them in striving for clinical best practice.

Background The COVID-19 pandemic has led to changes in health service utilization patterns and a rapid rise in care being delivered remotely. However, there has been little published research examining patients’ experiences of accessing remote consultations since COVID-19. Such research is important as remote methods for delivering some care may be maintained in the future. Objective The aim of this study was to use content from Twitter to understand discourse around health and care delivery in the United Kingdom as a result of COVID-19, focusing on Twitter users’ views on and attitudes toward care being delivered remotely. Methods Tweets posted from the United Kingdom between January 2018 and October 2020 were extracted using the Twitter application programming interface. A total of 1408 tweets across three search terms were extracted into Excel; 161 tweets were removed following deduplication and 610 were identified as irrelevant to the research question. The remaining relevant tweets (N=637) were coded into categories using NVivo software, and assigned a positive, neutral, or negative sentiment. To examine views of remote care over time, the coded data were imported back into Excel so that each tweet was associated with both a theme and sentiment. Results The volume of tweets on remote care delivery increased markedly following the COVID-19 outbreak. Five main themes were identified in the tweets: access to remote care (n=267), quality of remote care (n=130), anticipation of remote care (n=39), online booking and asynchronous communication (n=85), and publicizing changes to services or care delivery (n=160). Mixed public attitudes and experiences to the changes in service delivery were found. The proportion of positive tweets regarding access to, and quality of, remote care was higher in the immediate period following the COVID-19 outbreak (March-May 2020) when compared to the time before COVID-19 onset and the time when restrictions from the first lockdown eased (June-October 2020). Conclusions Using Twitter data to address our research questions proved beneficial for providing rapid access to Twitter users’ attitudes to remote care delivery at a time when it would have been difficult to conduct primary research due to COVID-19. This approach allowed us to examine the discourse on remote care over a relatively long period and to explore shifting attitudes of Twitter users at a time of rapid changes in care delivery. The mixed attitudes toward remote care highlight the importance for patients to have a choice over the type of consultation that best suits their needs, and to ensure that the increased use of technology for delivering care does not become a barrier for some. The finding that overall sentiment about remote care was more positive in the early stages of the pandemic but has since declined emphasizes the need for a continued examination of people’s preference, particularly if remote appointments are likely to remain central to health care delivery.