Developing and exploring the validity of a patient reported experience measure for adult inpatient diabetes care.

AIM: To develop and explore the validity of a Patient Reported Experience Measure (PREM) for adult inpatient diabetes care. METHOD: 27 in-depth interviews were conducted to inform the development of the 42-item PREM which was cognitively tested with 10 people. A refined 38-item PREM was piloted with 228 respondents completing a paper (n = 198) or online (n = 30) version. The performance of the PREM was evaluated by exploring (i) uptake/number of responses and (ii) survey validity by investigating whether the PREM data were of adequate quality and delivered useful information. RESULTS: The PREM had low drop-out or missing data rates suggesting it was appropriately constructed. Analysis of item frequencies and variances, and problem score calculations concluded that questions provided sufficient score differentiation. CONCLUSIONS: This new PREM allows for experiences of inpatient diabetes care to be measured, understood and reported on to help identify priority areas for improving care quality.

Hypothyroidism and Somatization: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey.

Background: Between 10% and 15% of hypothyroid patients experience persistent symptoms despite achieving biochemical euthyroidism. Unexplained persistent symptoms can be a sign of somatization. This is associated with distress and high health care resource use and can be classified as somatic symptom disorder (SSD). Prevalence rates for SSD differ depending on classification criteria and how they are ascertained, varying between 4% and 25%. As this has not been studied in hypothyroid patients before, the aim of this study was to document somatization in people with hypothyroidism and to explore associations with other patient characteristics and outcomes. Methods: Online, multinational cross-sectional survey of individuals with self-reported, treated hypothyroidism, which included the validated Patient Health Questionnaire-15 (PHQ-15) for assessment of somatization. Chi-squared tests with the Bonferroni correction were used to explore outcomes for respondents with a PHQ-15 score ≥10 (probable somatic symptom disorder [pSSD]) versus a PHQ-15 score <10 (absence of SSD). Results: A total of 3915 responses were received, 3516 of which contained the valid PHQ-15 data (89.8%). The median score was 11.3 (range 0-30 [confidence interval 10.9-11.3]). The prevalence of pSSD was 58.6%. Associations were found between pSSD and young age (p < 0.001), women (p < 0.001), not working (p < 0.001), having below average household income (p < 0.001), being treated with levothyroxine (LT4) (rather than combination of LT4 and L-triiodothyronine [LT3], LT3 alone, or desiccated thyroid extract) (p < 0.001), expression of the view that the thyroid medication taken did not control the symptoms of hypothyroidism well (p < 0.001), and with number of comorbidities (p < 0.001). pSSD was associated with respondent attribution of most PHQ-15 symptoms to the hypothyroidism or its treatment (p < 0.001), dissatisfaction with care and treatment of hypothyroidism (p < 0.001), a negative impact of hypothyroidism on daily living (p < 0.001), and with anxiety and low mood/depression (p < 0.001). Conclusions: This study demonstrates a high prevalence of pSSD among people with hypothyroidism and associations between pSSD and negative patient outcomes, including a tendency to attribute persistent symptoms to hypothyroidism or its treatment. SSD may be an important determinant of dissatisfaction with treatment and care among some hypothyroid patients.

Parents' Experiences of Communication in Neonatal Care (PEC): a neonatal survey refined for real-time parent feedback.

OBJECTIVE: Assessing parent experiences of neonatal services can help improve quality of care; however, there is no formally evaluated UK instrument available to assess this prospectively. Our objective was to refine an existing retrospective survey for 'real-time' feedback. METHODS: Co-led by a parent representative, we recruited a convenience sample of parents of infants in a London tertiary neonatal unit. Our steering group selected questions from the existing retrospective 61-question Picker survey (2014), added and revised questions assessing communication and parent involvement. We established face validity, ensuring questions adequately captured the topic, conducted parent cognitive interviews to evaluate parental understanding of questions,and adapted the survey in three revision cycles. We evaluated survey performance. RESULTS: The revised Parents' Experiences of Communication in Neonatal Care (PEC) survey contains 28 questions (10 new) focusing on communication and parent involvement. We cognitively interviewed six parents, and 67 parents completed 197 PEC surveys in the survey performance evaluation. Missing entries exceeded 5% for nine questions; we removed one and format-adjusted the rest as they had performed well during cognitive testing. There was strong inter-item correlation between two question pairs; however, all were retained as they individually assessed important concepts. CONCLUSION: Revised from the original 61-question Picker survey, the 28-question PEC survey is the first UK instrument formally evaluated to assess parent experience while infants are still receiving neonatal care. Developed with parents, it focuses on communication and parent involvement, enabling continuous assessment and iterative improvement of family-centred interventions in neonatal care.

The Impact of Hypothyroidism on Satisfaction with Care and Treatment and Everyday Living: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey.

Background: Hypothyroid patients often report dissatisfaction and poor quality of life. This survey explored the impact of hypothyroidism on patient satisfaction, everyday living, experiences with health care professionals, and influence of demographic and socioeconomic factors. Methods: Cross-sectional questionnaire survey targeting an international population of hypothyroid patients. Multilevel regression modeling was used for analyses. Results: The total number of responses was 3915 from 68 countries. Satisfaction with care and treatment was not associated with type of treatment for hypothyroidism. Having no confidence and trust in health care professionals was strongly associated with dissatisfaction (p < 0.001). Controlling for all other variables, significant differences were found among satisfaction rates between countries. A weak inverse relationship was found between satisfaction with care and treatment and impact on everyday living (p < 0.001). Respondents taking levothyroxine (LT4) alone were more likely to report a positive impact on everyday living (pooled odds ratio 2.376 [confidence interval: 0.941-5.997]) than respondents taking liothyronine-containing treatments. Conclusions: Low levels of satisfaction with care and treatment for hypothyroidism were strongly associated with lack of confidence and trust and negative experiences with health care professionals. Differences in responses between countries were noted, implying the potential influence of national health care systems, socioeconomic and cultural factors. Contrary to widespread anecdotes in social media, this large-scale survey shows no association between type of treatment for hypothyroidism and patient satisfaction, as well as better outcomes on everyday living associated with LT4, compared with liothyronine-containing treatments.

Using Twitter Comments to Understand People's Experiences of UK Health Care During the COVID-19 Pandemic: Thematic and Sentiment Analysis.

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.

How can patient experience scores be used to predict quality inspection ratings? A retrospective cross-sectional study of national primary care datasets in the UK.

OBJECTIVES: The relationship between patient feedback in the General Practice Patient Survey (GPPS) and Care Quality Commission (CQC) inspections of practices was investigated to understand whether there is an association between patient views and regulator ratings of quality. The specific aims were to understand whether patients' self-reported experiences of primary care can predict CQC inspection ratings of GP practices by: (i) Measuring the association between GPPS results and CQC inspection ratings of GP practices; (ii) Building a predictive model of GP practice quality ratings that use GPPS results; and (iii) Evaluating the predictive model for risk stratification. DESIGN: Retrospective analysis of routinely collected data using decision tree modelling. SETTING: Primary care: GP practices in England. PRIMARY AND SECONDARY OUTCOME MEASURES: GPPS scores and GP practice CQC inspection ratings during 2018. RESULTS: Most GP practices (72%, 974/1350) were rated as 'Good' overall by CQC. Simply assuming that all practices will be rated as 'Good' results in a correct prediction 72% of the time, and it was not possible to improve on this overall level of predictive accuracy using decision tree modelling (correct in 73% of cases). However, a set of GPPS questions were found to have value in identifying practices at elevated risk of a poor inspection rating. CONCLUSIONS: Although there were some associations between GPPS data and CQC inspection ratings, there were limitations to the use of GPPS data for predictive analysis. This is a likely result of the majority of CQC inspections of GPs resulting in a 'Good' or 'Outstanding' rating. However, some GPPS questions were found to have value in identifying practices at higher risk of an 'Inadequate' or 'Requires Improvement' rating, and this may be valuable for surveillance purposes. For example, the CQC could use key questions from the survey to target inspection planning.

Experiences and supportive care needs of UK patients with pancreatic cancer: a cross-sectional questionnaire survey.

OBJECTIVES: Patients 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. DESIGN: Cross-sectional questionnaire survey of patients with pancreatic cancer in the UK. SETTING: Individuals 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. PARTICIPANTS: 274 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 MEASURES: Experiences of communication and information; involvement in treatment decisions; supportive care needs. RESULTS: Communication 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. CONCLUSIONS: Patients 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.

Patient-reported experience measure in sickle cell disease.

OBJECTIVES: To develop patient-reported experience measure surveys for patients with sickle cell disease (SCD) to understand their healthcare and lived experience in the UK and for their use in future to inform healthcare service development. DESIGN: Picker methodology was used as follows: (1) qualitative scoping by focus group discussions; (2) questionnaire development through stakeholder consultations; (3) construct validation of questionnaires through cognitive testing; and (4) further assessment of construct validity by a nationwide pilot survey. SETTING: Patients with SCD and their carers were eligible. Focus group discussions took place in non-hospital settings, arranged out of hours. Cognitive testing took place in specialist sickle cell clinics. The pilot survey was available to UK participants only and was administered through web-based questionnaires, face-to face completion and in sickle cell community events. PARTICIPANTS: Thirty-three patients and carers took part in the focus groups, 21 participants undertook cognitive testing and 722 respondents completed the pilot survey. RESULTS: Findings highlighted a widespread prevalence of poor knowledge about SCD among healthcare providers and the public. Poorer experience of care was present in the emergency setting compared with planned care, of which lack of timely provision of pain relief was of concern. Adolescents and young people reported significantly poorer experience of care in several domains compared with children or adults. CONCLUSIONS: 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.

Children and young people's versus parents' responses in an English national inpatient survey.

OBJECTIVE: Despite 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. DESIGN: Cross-sectional analysis of national survey data. SETTING: Inpatients aged 8-15 years in eligible National Health Service hospitals, July-September 2014. PARTICIPANTS: 6204 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 MEASURES: Pain relief, involvement, quality of staff communication, perceived safety, ward environment, overall experience. ANALYSES: Single-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. RESULTS: The 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)). CONCLUSIONS: Including CYP (8-15 years) in patient experience surveys is feasible and enhances what is known from parents' responses.

Little voice: giving young patients a say.

BACKGROUND: Patient experience is widely measured in healthcare settings, but few tools exist that gather feedback directly from young patients. AIM: To develop a paediatric questionnaire to gain meaningful feedback from young hospital outpatients. METHOD: Two paper questionnaires were designed and tested--one for parents and one for young people. These were piloted in 2009 with 1,200 recent outpatients and their parents/carers from Sheffield Children's Foundation Trust. Rollout to 14 acute NHS trusts in England achieved an average response rate of 33%. RESULTS: The main problems for young outpatients related to waiting, pre-appointment information and communication. Questionnaire validation showed that both surveys were accessible and a reliable measure of patient experience. CONCLUSIONS: It is important to give children and young people a say in their healthcare via tested methods that are appropriate to their needs and abilities. Results can help hospital outpatient departments to identify the main issues and problems experienced by their young patients.

Acute anorectic response to cannabinoid CB1 receptor antagonist/inverse agonist AM 251 in rats: indirect behavioural mediation.

Despite a large and consistent literature on the suppressant effects of cannabinoid CB1 receptor antagonists/inverse agonists (e.g. rimonabant, AM 251) on food intake and weight gain in rodents, surprisingly little is known about the behavioural selectivity of such effects. In this study, ethological scoring was used to characterize the acute behavioural effects of the rimonabant analogue AM 251 (1.5 and 3.0 mg/kg, intraperitoneally) in nondeprived male rats during a 1-h test with palatable mash. Data were also collected on daily weight gain and on retest food intake 7 days after dosing. Results showed that the higher dose of AM 251 significantly inhibited mash consumption (32% decrease relative to vehicle control), reduced time spent feeding during the test and suppressed body weight gain over the 48-h period that followed acute dosing. No effects on mash consumption were observed when the animals were retested drug-free 1 week after drug treatment. Detailed video analysis of the test sessions showed that, over the dose range tested, AM 251 did not significantly interfere with the vast majority of noningestive behaviours. Both doses of the compound, however, significantly increased the incidence of and the time spent on scratching, whereas the higher dose additionally increased both the number and duration of grooming episodes. The latter effect in particular disrupted the normal structure of behaviour (behavioural satiety sequence) with atypically high levels of grooming displacing feeding during the middle part of the test session. Overall, the behavioural profile of AM 251 in a free-feeding context is very similar to (but approximately two-fold less potent than) that recently reported for the parent molecule, rimonabant. Together, these data strongly suggest that the acute anorectic response to CB1 receptor antagonists/inverse agonists is indirectly mediated via major alterations to other components of the behavioural repertoire.