OBJECTIVES:Cancer screening is crucial for early detection and improved outcomes globally. Screening must be "acceptable" to health professionals and the public. However, acceptability definitions and measures have not always been made explicit. This scoping review aimed to explore the definitions, theories, and methods used by researchers investigating acceptability. METHODS:We conducted a term-based scoping review of published literature in six databases. Two independent reviewers screened citations for inclusion. Study characteristics (publication year, country, study design, sample size, population, methodological characteristics), characteristics of acceptability (definition, theory, test or device), and screening context (cancer type, screening procedure) were extracted by one author and checked independently by a second author. Results were reported descriptively. Definitions and operationalisations of acceptability were analysed through content analysis. RESULTS:We identified 393 studies, largely published after 2013. Most examined patient or public attitudes towards self-sampling for cervical screening. Few studies cited theory (n = 55, 14%) or provided a definition of acceptability (n = 17, 4.3%). Acceptability was typically defined as a multidimensional construct or as perceptions or attitudes towards screening. Studies operationalised acceptability most often as physical side-effects (n = 68, 42.8%), willingness to attend screening (n = 59, 29.4%), screening method preference (n = 55, 27.4%), ease of use (n = 52, 25.9%), and general attitudes (n = 51, 25.4%). CONCLUSIONS:Research focussed on acceptability in cancer screening has not been based on theory and uses a range of operationalisations, including loosely related constructs such as uptake. A specific definition of acceptability in cancer screening and reporting guidelines for interdisciplinary research are needed to support evidence-based decision-making.
Objective: No standardised approach exists to provide advice after urgent suspected cancer (USC) referral when cancer is not found. This study aimed to assess preferences and acceptability of receiving advice after USC referral related to: 1) managing ongoing symptoms, 2) responding to early symptoms of other cancers, 3) cancer screening, 4) reducing risks of future cancer. Methods: 2,541 patients from two English NHS Trusts were mailed a survey 1-3 months after having no cancer found following urgent suspected gastrointestinal or head and neck cancer referral. Participants were asked about: willingness to receive advice; prospective acceptability; preferences related to mode, timing and who should provide advice; and previous advice receipt. Results: 406 patients responded (16.0%) with 397 in the final analyses. Few participants had previously received advice, yet most were willing to. Willingness varied by type of advice: fewer were willing to receive advice about early symptoms of other cancers (88.9%) than advice related to ongoing symptoms (94.3%). Acceptability was relatively high for all advice types. Reducing the risk of future cancer advice was more acceptable. Acceptability was lower in those from ethnic minority groups, and with lower levels of education. Most participants preferred to receive advice from a doctor; with results or soon after; either face to face or via the telephone. Conclusions: There is a potential unmet need for advice after USC referral when no cancer is found. Equitable intervention design should focus on increasing acceptability for people from ethnic minority groups and those with lower levels of education.
OBJECTIVES:Each year in the United Kingdom there are around 5,000 inter-hospital transfers of critically ill children into PICUs. There are few published descriptions of what this experience is like for parents. The objective was to describe parents' experiences of the inter-hospital transfer of their critically ill child to a PICU.DESIGN:Qualitative in-depth interviews.SETTING:Twenty-four PICUs in England and Wales.PARTICIPANTS:Parent interview participants ( n = 30) were purposively sampled from a larger pool of parent questionnaire respondents to create a sample diverse in child's age, presenting medical illness, retrieval team and whether a parent traveled in the ambulance.MEASUREMENT AND MAIN RESULTS:Open-ended semi-structured interviews using topic guides to encourage parents to describe their experiences of transfer. Interviews were audio recorded, transcribed verbatim and thematically analyzed using Framework Analysis. Parents' perceptions of transport staff as confident and competent through observation of clinical care, and positive communication experiences during the transfer process, were related to feelings of trust and being supported, as well as relief from distress. Parents varied in their needs for conversation and support. Parents who did not travel in the ambulance had fewer opportunities to interact with the transport team and experienced different challenges in the period prior to their child's admission to the PICU.CONCLUSIONS:Retrieval teams can influence how parents experience their child's emergency transfer to the PICU, offering parents proximity to knowledgeable staff. Satisfaction may be related to matching parents' needs. Understanding parents' needs and optimizing opportunities for effective communication between parents and staff are beneficial to parents.
Background Following referral for investigation of urgent suspected cancer within the English National Health Service referral system, 7% of referred individuals are diagnosed with cancer. This study aimed to investigate the risk of cancer occurrence within 1-5 years of finding no cancer following an urgent suspected cancer referral. Methods This national cohort study used urgent suspected cancer referral data for England from the Cancer Waiting Times dataset and linked it with cancer diagnosis data from the National Cancer Registration dataset. Data were extracted for the eight most commonly referred to urgent suspected cancer referral pathways (breast, gynaecological, head and neck, lower and upper gastrointestinal, lung, skin, and urological) for the period April 1, 2013, to March 31, 2014, with 5-year follow-up for individuals with no cancer diagnosis within 1 year of referral. The primary objective was to investigate the occurrence and type of subsequent cancer in years 1-5 following an urgent suspected cancer referral when no cancer was initially found, both overall and for each of the eight referral pathways. The numbers of subsequent cancers were compared with expected cancer incidence in years 1-5 following referral, using standardised incidence ratios (SIRs) based on matched age-gender distributions of expected cancer incidence in England for the same time period. The analysis was repeated, stratifying by referral group, and by calculating the absolute and expected rate of all cancers and of the same individual cancer as the initial referral.Findings Among 1 center dot 18 million referrals without a cancer diagnosis in years 0-1, there were 63 112 subsequent cancers diagnosed 1-5 years post-referral, giving an absolute rate of 1338 (95% CI 1327-1348) cancers per 100 000 referrals per year (1038 [1027-1050] in females, 1888 [1867-1909] in males), compared with an expected rate of 1054 (1045-1064) cancers per 100 000 referrals per year (SIR 1 center dot 27 [95% CI 1 center dot 26-1 center dot 28]). The absolute rate of any subsequent cancer diagnosis 1-5 years after referral was lowest following suspected breast cancer referral (746 [728-763] cancers per 100 000 referrals per year) and highest following suspected urological (2110 [2070-2150]) or lung cancer (1835 [1767-1906]) referral. For diagnosis of the same cancer as the initial referral pathway, the highest absolute rates were for the urological and lung pathways (1011 [984-1039] and 638 [598-680] cancers per 100 000 referrals per year, respectively). The highest relative risks of subsequent diagnosis of the same cancer as the initial referral pathway were for the head and neck pathway (SIR 3 center dot 49 [95% CI 3 center dot 22-3 center dot 78]) and lung pathway (3 center dot 00 [2 center dot 82-3 center dot 20]). Interpretation Cancer risk was higher than expected in the 5 years following an urgent suspected cancer referral. The potential for targeted interventions, such as proactive monitoring, safety-netting, and cancer awareness or risk reduction initiatives should be investigated.
Artificial intelligence (AI) in healthcare describes algorithm-based computational techniques which manage and analyse large datasets to make inferences and predictions. There are many potential applications of AI in the care of older people, from clinical decision support systems that can support identification of delirium from clinical records to wearable devices that can predict the risk of a fall. We held four meetings of older people, clinicians and AI researchers. Three priority areas were identified for AI application in the care of older people. These included: monitoring and early diagnosis of disease, stratified care and care coordination between healthcare providers. However, the meetings also highlighted concerns that AI may exacerbate health inequity for older people through bias within AI models, lack of external validation amongst older people, infringements on privacy and autonomy, insufficient transparency of AI models and lack of safeguarding for errors. Creating effective interventions for older people requires a person-centred approach to account for the needs of older people, as well as sufficient clinical and technological governance to meet standards of generalisability, transparency and effectiveness. Education of clinicians and patients is also needed to ensure appropriate use of AI technologies, with investment in technological infrastructure required to ensure equity of access.
Objective: This study investigated perspectives of healthcare professionals (HCPs) on the feasibility of giving additional support to patients after cancer is not found following urgent referral. We sought to understand key facilitators or barriers to offering such support.Methods: A convenience sample of primary and secondary care healthcare professionals (n = 36) participated in semi-structured interviews. Interviews were transcribed verbatim and analysed using Framework Analysis, inductively and deductively, guided by the Theoretical Domains Framework.Results: HCPs indicated that support should be offered if proven to be efficacious. It needs to avoid potential negative consequences such as patient anxiety and information overload. HCPs were more hesitant about whether support could feasibly be offered, due to resource restrictions and perceived remit of the urgent pathway for suspected cancer.Conclusion: HCP support after discharge from urgent cancerreferral pathways needs to be resource efficient, developed in collaboration with patients and should have proven efficacy. Development of brief interventions for delivery by a range of staff, and use of technology could mitigate barriers to implementation.Practice implications: Changes to discharge procedures to provide information, endorsement or direction to ser-vices could offer much needed support. Additional support would need to overcome logistical challenges and address limited capacity.
•Functional aspects of experience are most likely to dissatisfy if not met.•Relational aspects of experience drive increasing satisfaction with service.•Patients want to be informed about and supported through the experience.•Patients value the connection with imaging staff when undergoing an MRI.•Time is well acknowledged as a barrier to meeting patient needs in MRI.•Acknowledge, Introduce, Describe, Explain, Reassure, Take through next steps is proposed as an alternative communication framework to support rapid rapport and meet patient needs.
User feedback is an important element of health-service evaluation and can be used to improve services but can be difficult to obtain, particularly in acute care situations. As part of a national study, we explored stakeholders’ perspectives on paediatric critical care retrieval processes through questionnaires and interviews. Obtaining feedback in a highly charged, stressful and busy paediatric intensive care unit (PICU) environment is fraught with difficulties so we aimed to optimise each stage of data collection by being both proactive and reactive. Patient and public involvement occurred throughout and engagement with sites and supporting local research staff to approach and recruit families were prioritised. High-quality study materials were developed to reduce local staff burden and promote and maintain study awareness. We describe strategies used and what worked/did not work. We suggest approaches for optimising elicitation of parents’ experiences in difficult circumstances, highlighting the importance of engagement and commitment of PICU staff.
There are national and global moves to improve effective digital data design and application in healthcare. This New Horizons commentary describes the role of digital data in healthcare of the ageing population. We outline how health and social care professionals can engage in the proactive design of digital systems that appropriately serve people as they age, carers and the workforce that supports them. KEY POINTS:Healthcare improvements have resulted in increased population longevity and hence multimorbidity. Shared care records to improve communication and information continuity across care settings hold potential for older people. Data structure and coding are key considerations. A workforce with expertise in caring for older people with relevant knowledge and skills in digital healthcare is important.
Background Centralisation of paediatric intensive care has increased the need for specialist critical care transport teams to transfer sick children from general hospitals to tertiary centres. National audit data show variation in how quickly transport teams reach the patient’s bedside and in the models of care provided during transport; however, the impact of this variation on clinical outcomes and the experience of patients, families and clinicians is unknown. Objectives We aimed to understand if and how clinical outcomes and experience of children transported for intensive care are affected by timeliness of access to a transport team and different models of transport care. Methods We used a mixed-methods approach with a convergent triangulation study design. There were four study workstreams: a retrospective analysis of linked national clinical audit data (2014–16) (workstream A), a prospective questionnaire study to collect experience data from parents of transported children and qualitative analysis of interviews with patients, families and clinicians (workstream B), health economic evaluation of paediatric transport services (workstream C) and mathematical modelling evaluating the potential impact of alternative service configurations (workstream D). Results Transport data from over 9000 children were analysed in workstream A. Transport teams reached the patient bedside within 3 hours of accepting the referral in > 85% of transports, and there was no apparent association between time to bedside and 30-day mortality. Similarly, the grade of the transport team leader or stabilisation approach did not appear to affect mortality. Patient-related critical incidents were associated with higher mortality (adjusted odds ratio 3.07, 95% confidence interval 1.48 to 6.35). In workstream B, 2133 parents completed experience questionnaires pertaining to 2084 unique transports of 1998 children. Interviews were conducted with 30 parents and 48 staff. Regardless of the actual time to bedside, parent satisfaction was higher when parents were kept informed about the team’s arrival time and when their expectation matched the actual arrival time. Satisfaction was lower when parents were unsure who the team leader was or when they were not told who the team leader was. Staff confidence, rather than seniority, and the choice for parents to travel with their child in the ambulance were identified as key factors associated with a positive experience. The health economic evaluation found that team composition was variable between transport teams, but not significantly associated with cost and outcome measures. Modelling showed marginal benefit in changing current transport team locations, some benefit in reallocating existing teams and suggested where additional transport teams could be allocated in winter to cope with the expected surge in demand. Limitations Our analysis plans were limited by the impact of the pandemic. Unmeasured confounding may have affected workstream A findings. Conclusions There is no evidence that reducing the current 3-hour time-to-bedside target for transport teams will improve patient outcomes, although timeliness is an important consideration for parents and staff. Improving communication during transport and providing parents the choice to travel in the ambulance with their child are two key service changes to enhance patient/family experience. Future work More research is needed to develop suitable risk-adjustment tools for paediatric transport and to validate the short patient-related experience measure developed in this study. Trial registration This trial is registered as ClinicalTrials.gov NCT03520192. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research ; Vol. 10, No. 34. See the NIHR Journals Library website for further project information.
OBJECTIVES:Dentists and other members of the dental team could raise awareness by talking about oral cancer during routine dental check-ups. A communication guide has been developed to facilitate this. However, it has been suggested that discussions about oral cancer may raise patients' anxiety and this has been documented by dentists as a barrier to having these conversations. The current research aimed to investigate implementation of the communication guide and its impact on the dental patient.METHODS:A consecutive-case sample of adult dental patients attending primary dental care for a routine NHS check-up at one dental practice were invited to take part in the study via letter prior to their appointment. Consultations of participating patients (n = 77) were audio-recorded. Before and after their appointment, patients were asked to rate their current anxiety via the six-item version of Spielberger's State-Trait Anxiety Inventory. Audio recordings of each consultation were reviewed by two raters to determine the extent to which the dentist covered the topics recommended in the communication guide.RESULTS:The dentist informed all patients that they were being checked for oral cancer, spoke about signs and symptoms, and discussed risk factors. However, they rarely recommended where help should be sought or addressed barriers to seeking help. Discussions took an average of 95 s. The extent to which oral cancer was discussed did not correlate with patients' post-appointment anxiety. Patients made positive or neutral responses to the discussions. The few questions that were asked were easily addressed.CONCLUSIONS:As findings are based on one dentist working at one practice, generalization of these results should be cautious. The study indicated that using an evidence-based guide to talk about oral cancer did not appear to raise patients' anxiety in this practice population. This could help to increase awareness of oral cancer in the endeavour to facilitate early cancer diagnosis.
BACKGROUND:A third of children admitted to paediatric intensive care units (PICUs) in the United Kingdom (UK) are transported by paediatric critical care transport services (PCCTs). Parents have described the transfer journey as particularly stressful. Critical care nurses have a key role in mitigating the impact of the journey on parents. Evaluating parents' experiences is important to inform service improvements.AIM AND OBJECTIVES:Our aim was to describe the development of a new measure of parents' experiences of PCCTs, derived from data collected in the Differences in access to Emergency Paediatric Intensive Care and care during Transport (DEPICT) study.DESIGN:A descriptive cross-sectional survey was used.METHODS:As part of the DEPICT study, a 17-item transport experience questionnaire was developed and given to parents of children transported by PCCTs to 24 UK PICUs during a 12-month period. Analyses included exploratory factor analysis and a validation review by a PCCT stakeholder group.RESULTS:Families of 1722 children (1798 journeys) completed questionnaires. Five items were excluded from further analysis as correlation coefficients were <0.3. Two factors explained 53% of the variance and all 12 items loaded on one of these factors. Factor 1 (8 items) explained 47% of the variance, had excellent internal reliability and the clustered items were conceptually coherent with a specific relevance to PCCTs; these were offered for consideration, with other items possibly discarded. Twenty-eight PCCT clinicians reviewed the questions. Using a 70% agreement threshold, one additional, previously discarded, item was identified for inclusion, resulting in a nine-item experience measure.CONCLUSION:Our brief measure of parents' experience of critical care transport provides a standardized measure that can be used across all PCCTs, enabling national benchmarking of services and potentially increasing the collection and use of parent experience data to improve services.RELEVANCE TO CLINICAL PRACTICE:Being able to measure experience provides an opportunity to understand how to make services better to improve experience.
OBJECTIVES: Quality standards for pediatric intensive care transport services in the U.K. state that at least one parent should be allowed to travel with their child during emergency transport to a PICU. We aimed to identify the reasons why parents do, or do not, accompany their child and whether there is an association between parental presence in the ambulance and their satisfaction with the transport. DESIGN: National cross-sectional parent questionnaire. SETTING: Pediatric Critical Care Transport (PCCT) teams and PICUs in England and Wales. PARTICIPANTS: Parents of children transferred to one of 24 participating PICUs between January 2018 and January 2019. INTERVENTIONS: None. MEASUREMENTS and MAIN RESULTS: A parent feedback questionnaire was completed by parents whose child received an emergency interhospital transfer. As part of the questionnaire, a brief nine-item scale was developed to summarize parental transport experience (ranging from 1 to 5). The association between parental presence in the ambulance and parental experience was analyzed. A total of 4,558 children were transported during the study. Consent was obtained from 2,838 parents, and questionnaires received in 2,084 unique transports (response rate: 45.7%). In 1,563 transports (75%), at least one parent traveled in the ambulance. Parents did not travel in 478 transports (23%) and, in most instances (442 transports; 93%), offered reasons (emotional, practical, and health-related) for declining to travel or explanations why they were not permitted to travel (mainly due to space restrictions). Most parents rated their experience with the retrieval teams very highly, and within this context, we found evidence of greater variability in experience ratings if parents were not present in the ambulance and if this was not their choice. CONCLUSIONS: Most parents who completed questionnaires rated their experience with their PCCT team highly. Parental presence and choice to travel in the ambulance were associated with a more positive experience.
ABSTRACT People undergoing investigations for suspected cancer have to undergo a number of investigations before they know their full diagnosis and treatment plan. We examined predictors of distress among patients undergoing staging investigations for suspected colorectal or lung cancer. Patients were prospectively recruited to two multi-centre trials comparing WB-MRI with standard scans. Patients completed a questionnaire, administered at trial recruitment, measuring demographic and psychological variables (n = 129, 66 colorectal, 63 lung; median age 66.4, range: 31–89). Predictors of distress were analysed using logistic regression. Forty percent of patients reported high distress (a score of 4 or higher on the GHQ-12). Higher deprivation and greater intolerance of uncertainty (IU) predicted high distress in both unadjusted (low deprivation: OR 0.352, 95% CIs 0.144 to 0.860, p = 0.022; IU: OR 1.972, 95% CIs: 1.357 to 2.865, p < 0.001) and adjusted analyses (low deprivation: OR 0.243, 95% CIs 0.083 to 0.714, p = 0.010; IU: OR 2.231, 95% CIs 1.429 to 3.485, p < 0.001). Age, gender, presence of comorbid illness, cancer type, probable knowledge of cancer diagnosis, and a final diagnosis of cancer did not predict high distress. Future research should examine how to reduce distress in patients undergoing investigations for cancer, particularly among those who find uncertainty difficult to manage.
BackgroundEach year, nearly 5000 critically ill children and young people (CYP) are transported by paediatric intensive care retrieval teams (PICRTs) from general hospitals to UK paediatric intensive care units (PICUs). Great Ormond Street Hospital (GOSH) accepts the greatest proportion of patients annual (circa 600) most retrieved by the GOSH based retrieval service CATS (Children’s Acute Transport Service). Our study aimed to understand the experiences of families whose child used these services including those who were transferred using CATS.MethodsParents of transported CYP were approached while in PICU and invited to participate in the study, which included filling out a questionnaire about their experience of their child’s journey.Results24 (of 25) UK PICUs located in 21 NHS Trusts participated, 4558 CYP were identified as eligible for the study over a recruitment period of 12 consecutive months (January 2018–2019); 2838 consented (response rate of 62%), 2133 completed questionnaires were received (73.5% of consenting parents) and 1796 (84.2%) questionnaires related to unique transfers by the 9 specialist PICRT in England and Wales, 16% of responses were received from patients transferred into GOSH. Most families reported the overall experience and quality of care as ‘excellent’ (n=1574; 87.6%; n=1615; 89.9% respectively) but a small proportion of families reported feeling confused about what was happening during transport (n=193; 10.7%), felt the transport team did not listen to them (n=27; 1.5%), and did not understand answers to questions asked (n=37; 2.1%).ConclusionsService development is helped by understanding when and why experiences are sub-optimal and while quality of care delivered by PICRT appears to be almost universally perceived as ‘excellent’ families’ experience is impacted by communication and could be improved through individualised –tailored- communication. Acknowledgement this study was funded by the NIHR HS&DR.
INTRODUCTION:Whole body magnetic resonance imaging (WB-MRI) may be more efficient in staging cancers, but can be harder for patients to tolerate. We examined predictors of patient preference for WB-MRI vs. CT/ PET-CT for staging colorectal or lung cancer. METHODS:Patients recruited prospectively to two multicentre trials comparing diagnostic accuracy of WB-MRI with standard staging scans were sent two questionnaires: the first, administered at trial registration, captured demographics, educational level and comorbidities; the second, administered after staging completion, measured emotional distress (GHQ-12), positive mood (PANAS), perceived scan burden, patients' beliefs about WB-MRI, and preference for either WB-MRI or CT (colorectal trial), WB-MRI or PET-CT (lung trial). Preference for WB-MRI or CT/ PET-CT was analysed using logistic regression. RESULTS:Baseline and post-staging questionnaires were completed by 97 and 107 patients, respectively. Overall, 56/107 (52%) preferred WB-MRI over standard scans and were more likely to have no additional comorbidities, higher positive mood, greater awareness of potential benefits of WB-MRI and lower levels of perceived WB-MRI scan burden. In adjusted analyses, only awareness of potential WB-MRI benefits remained a significant predictor (OR: 1.516, 95% CIs 1.006-2.284, P = 0.047). Knowledge that WB-MRI does not use radiation predicted preference (adjusted OR: 3.018, 95% CIs 1.099-8.288, P = 0.032), although only 45/107 (42%) patients were aware of this attribute. CONCLUSIONS:A small majority of patients undergoing staging of colorectal or lung cancer prefer WB-MRI to CT/ PET-CT. Raising awareness of the potential benefits of WB-MRI, notably lack of ionizing radiation, could influence preference.
To determine the importance placed by patients on attributes associated with whole-body MRI (WB-MRI) and standard cancer staging pathways and ascertain drivers of preference. Patients recruited to two multi-centre diagnostic accuracy trials comparing WB-MRI with standard staging pathways in lung and colorectal cancer were invited to complete a discrete choice experiment (DCE), choosing between a series of alternate pathways in which 6 attributes (accuracy, time to diagnosis, scan duration, whole-body enclosure, radiation exposure, total scan number) were varied systematically. Data were analysed using a conditional logit regression model and marginal rates of substitution computed. The relative importance of each attribute and probabilities of choosing WB-MRI-based pathways were estimated. A total of 138 patients (mean age 65, 61% male, lung n = 72, colorectal n = 66) participated (May 2015 to September 2016). Lung cancer patients valued time to diagnosis most highly, followed by accuracy, radiation exposure, number of scans, and time in the scanner. Colorectal cancer patients valued accuracy most highly, followed by time to diagnosis, radiation exposure, and number of scans. Patients were willing to wait 0.29 (lung) and 0.45 (colorectal) weeks for a 1% increase in pathway accuracy. Patients preferred WB-MRI-based pathways (probability 0.64 [lung], 0.66 [colorectal]) if they were equivalent in accuracy, total scan number, and time to diagnosis compared with a standard staging pathway. Staging pathways based on first-line WB-MRI are preferred by the majority of patients if they at least match standard pathways for diagnostic accuracy, time to diagnosis, and total scan number. • WB-MRI staging pathways are preferred to standard pathways by the majority of patients provided they at least match standard staging pathways for accuracy, total scan number, and time to diagnosis. • For patients with lung cancer, time to diagnosis was the attribute valued most highly, followed by accuracy, radiation dose, number of additional scans, and time in a scanner. Preference for patients with colorectal cancer was similar. • Most (63%) patients were willing to trade attributes, such as faster diagnosis, for improvements in pathway accuracy and reduced radiation exposure.
IntroductionFollowing centralisation of UK paediatric intensive care, specialist retrieval teams were established who travel to general hospitals to stabilise and transport sick children to regional paediatric intensive care units (PICUs). There is national variation among these PICU retrieval teams (PICRTs) in terms of how quickly they reach the patient’s bedside and in the care provided during transport. The impact of these variations on clinical outcomes and the experience of stakeholders (patients, families and healthcare staff) is however unknown. The primary objective of this study is to address this evidence gap.Methods and analysisThis mixed-methods project involves the following: (1) retrospective analysis of linked data from routine clinical audits (2014–2016) to assess the impact of service variations on 30-day mortality and other secondary clinical outcomes; (2) a prospective questionnaire study conducted at 24 PICUs and 9 associated PICRTs in England and Wales over a 12-month period in 2018 to collect experience data from parents of transported children as well as qualitative analysis of in-depth interviews with a purposive sample of patients, parents and staff to assess the impact of service variations on patient/family experience; (3) health economic evaluation analysing transport service costs (and other associated costs) against lives saved and longer term measurements of quality of life at 12 months in transported children and (4) mathematical modelling evaluating the costs and potential impact of different service configurations. A final work stream involves a series of stakeholder workshops to synthesise study findings and generate recommendations.Ethics and disseminationThe study has been reviewed and approved by the Health Research Authority, ref: 2 18 569. Study results will be actively disseminated through peer-reviewed journals, conference presentations, social media, print and broadcast media, the internet and stakeholder workshops.
Objective: To evaluate perceived patient burden and acceptability of whole body MRI (WB-MRI) compared to standard staging investigations, and identify predictors of reduced tolerance. Methods: Patients recruited to multicentre trials comparing WB-MRI with standard staging scans for lung and colorectal cancer were invited to complete two questionnaires: a baseline questionnaire at recruitment, measuring demographics, comorbidities, and distress; and a follow-up questionnaire after staging, measuring recovery time, comparative acceptability/satisfaction between WB-MRI and CT (colorectal cancer) and PET-CT (lung cancer), and perceived scan burden (scored 1, low; 7, high). Results: 115 patients (median age 66.3 years; 67 males) completed follow up and 103 baseline questionnaires. 69 (63.9%) reported "immediate" recovery from WB-MRI and 73 (65.2%) judged it "very acceptable". Perceived WB-MRI burden was greater than for CT (p < 0.001) and PET-CT (p < 0.001). High distress and comorbidities were associated with greater WB-MRI burden in adjusted analyses, with deprivation only approaching significance (adjusted regression β = 0.223, p = 0.025; β = 0.191, p = 0.048; β = −0.186, p = 0.059 respectively). Age (p = 0.535), gender (p = 0.389), ethnicity (p = 0.081) and cancer type (p = 0.201) were not predictive of WB-MRI burden. Conclusion: WB-MRI is marginally less acceptable and more burdensome than standard scans, particularly for patients with pre-existing distress and comorbidities. Advances in knowledge: This research shows that WB-MRI scan burden, although low, is higher than for current staging modalities among patients with suspected colorectal or lung cancer. Psychological and physical comorbidities adversely impact on patient experience of WB-MRI. Patients with high distress or comorbid illness may need additional support to undergo a WB-MRI.
ObjectiveTo describe the experience and acceptability of whole-body magnetic resonance imaging (WB-MRI) staging compared with standard scans among patients with highly suspected or known colorectal or lung cancer.DesignQualitative study using one-to-one interviews with thematic analysis.SettingPatients recruited from 10 hospitals in London, East and South East England between March 2013 and July 2014.Participants51 patients (31 male, age range 40–89 years), with varying levels of social deprivation, were recruited consecutively from two parallel clinical trials comparing the diagnostic accuracy and cost-effectiveness of WB-MRI with standard scans for staging colorectal and lung cancer (‘Streamline-C’ and ‘Streamline-L’). WB-MRI was offered as an additional scan as part of the trials.ResultsIn general WB-MRI presented a greater challenge than standard scans, although all but four patients completed the WB-MRI. Key challenges were enclosed space, noise and scan duration; reduced patient tolerance was associated with claustrophobia, pulmonary symptoms and existing comorbidities. Coping strategies facilitated scan tolerance and were grouped into (1) those intended to help with physical and emotional challenges, and (2) those focused on motivation to complete the scan, for example focusing on health benefit. Our study suggests that good staff communication could reduce anxiety and boost coping strategies.ConclusionsAlthough WB-MRI was perceived as more challenging than standard scans, it was sufficiently acceptable and tolerated by most patients to potentially replace them if appropriate.Trial registration numberISRCTN43958015 andISRCTN50436483.