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.
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.
BACKGROUND The Covid-19 pandemic has led to changes in health service utilization patterns and a rapid rise in care being delivered remotely. 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 To use content from Twitter to understand public discourse around health and care delivery in the UK as a result of Covid-19, in particular views on and attitudes to care being delivered remotely. METHODS Tweets posted from the UK between January 2018 and October 2020 were extracted using the Twitter API. 1,408 tweets across three search terms were extracted into Excel. 161 tweets were removed following de-duplication, and 610 were identified as irrelevant to the research question. 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 was imported back into Excel so that each tweet was associated with both a theme(s) 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 publicising 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 the 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 a breadth of attitudes to remote care delivery at a time when it would have been difficult to conduct primary research due to Covid-19. It allowed us to examine public discourse on remote care over a relatively long period and explore shifting public attitudes at a time of rapid changes in care delivery. The mixed attitudes towards remote care highlights the importance that patients have a choice over the type of consultation that best suits their needs, and 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 since declined emphasises the need for a continued examination of people’s preference, particularly if remote appointments are likely to remain central to healthcare delivery.
AimsThe survey implementation aimed to collect data which could give insights into the experiences of young outpatients regarding the healthcare they received. The overall aim is to provide actionable results for NHS trusts which will allow them to focus improvement efforts on what matters most to those using their services.MethodsThe paediatric outpatient survey (first piloted in 2009 and since repeated annually for interested NHS Trusts) was conducted with nine acute NHS trusts in England in 2015. There were two survey versions – one for parents of children aged 0–7 years, and one for young outpatients aged 8–16. The survey sections are designed to mirror the patient journey. It has been designed specifically for young patients and includes child friendly questions and design. A random sample of 7650 young outpatients who attended an appointment in February 2015 were invited to give feedback via a postal questionnaire. A copy of the relevant questionnaire was sent via post to patients' home addresses, followed by two reminder mailings to non-responders.ResultsThe overall response rate for eligible patients across all participating trusts was 26% (n = 1955). Although parents and children gave similar responses to some questions, they contrasted on others. 96% of children felt they were looked after well and 95% of parent rated their child’s care as (very) good or excellent overall. Despite these positive overall care ratings, 33% of children were not fully involved in decisions about what happened to them in hospital, and 29% felt scared or frightened during their appointment. Additionally, 48% of parents were not told fully about medication side effects, and more than half did not fully know before the appointment what was going to happen.ConclusionAs well as highlighting areas of good performance, the survey identified areas for improvement for participating trusts. Additionally, it demonstrated the capacity and willingness of young patients to give feedback on their care. Understanding the hospital experience of young outpatients and learning what is important to them is valuable for improving services for this patient population.
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