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ObjectivesDelay in the induction of labour (IOL) process is associated with poor patient experience and adverse perinatal outcome. Our objective was to identify factors associated with delay in the IOL process and develop interventions to reduce delay.Design and settingsWe performed a retrospective cohort study of maternity unit workload in a large UK district general hospital. Electronic hospital records were used to quantify delay in the IOL process and linear regression analysis was performed to assess significant associations between delay and potential causative factors. A novel computer maternity unit simulation model, MUMSIM (Maternity Unit Management SIMulation), was developed using real-world data and interventions were tested to identify those associated with a reduction in delay.ParticipantsAll women giving birth at Stoke Mandeville Hospital, Buckinghamshire National Health Service (NHS) Trust in 2018 (n=4932).Primary outcome measureDelay in the IOL process of more than 12 hours.ResultsThe retrospective analysis of real-world maternity unit workload showed 30% of women had IOL and of these, 33% were delayed >12 hours with 20% delayed >24 hours, 10% delayed >48 hours and 1.3% delayed >72 hours. Delay was significantly associated with the total number of labouring women (p=0.008) and the number of booked IOL (p=0.009) but not emergency IOL, spontaneously labouring women or staffing shortfall. The MUMSIM computer simulation predicted that changing from slow release 24-hour prostaglandin to 6-hour prostaglandin for primiparous women would reduce delay by 4% (pConclusionsPlanned obstetric workload of booked IOL is associated with delay rather than the unpredictable workload of women in spontaneous labour or emergency IOL. We present a novel maternity unit computer simulation model, MUMSIM, which allows prediction of the impact of interventions to reduce delay.

ObjectiveWithin Australia, Aboriginal and Torres Strait Islander (First Nations) populations perceive health and well-being differently to non-Indigenous Australians. Existing health-related quality of life (HR-QoL) measurement tools do not account for these differences. The objective of this study was to develop and validate a culturally specific parent-proxy HR-QoL measurement tool for First Nations children.DesignScale development was informed by parents/carers of children with a chronic illness and an expert panel. The preliminary 39-item survey was reviewed (n=12) and tested (n=163) with parents/carers of First Nations children aged 0–12 years at baseline with comparative scales: the Kessler Psychological Distress Scale, generic HR-QoL (Paediatric QoL Inventory 4.0, PedsQL4.0) and Spence Children’s Anxiety Scale, and repeated (n=46) 4 weeks later. Exploratory Factor Analysis was used for scale reduction. Reliability and validity were assessed by internal consistency, test–retest, and correlations with comparison scales.ResultsItems within our First Nations-Child Quality of Life (FirstNations-CQoL) were internally consistent with Cronbach’s alpha coefficients of ≥0.7 (quality of life, 0.808; patient experience, 0.880; patient support, 0.768) and overall test–retest reliability was good (r=0.75; 95% CI 0.593 to 0.856). Convergent validity was observed with the PedsQL4.0 with Pearson’s coefficients of r=0.681 (ages 2–4 years); r=0.651 (ages 5–12 years) and with the Kessler Psychological Distress scale (r=−0.513). Divergent validity against the Spence Anxiety Scale was not demonstrated.ConclusionsThe FirstNations-CQoL scale was accepted by the participants, reliable and demonstrated convergent validity with comparison measures. This tool requires further evaluation to determine responsiveness, its minimal important difference and clinical utility.

ObjectiveExplore the interaction between patient experienced symptoms and burden of treatment (BoT) theory in chronic heart failure (CHF). BoT explains how dynamic patient workload (self-care) and their capacity (elements influencing capability), impacts on patients’ experience of illness.DesignReview of qualitative research studies.Data sourcesCINAHL, EMBASE, MEDLINE, PsycINFO, Scopus and Web of Science were searched between January 2007 and 2020.Eligibility CriteriaJournal articles in English, reporting qualitative studies on lived experience of CHF.Results35 articles identified related to the lived experience of 720 patients with CHF. Symptoms with physical and emotional characteristics were identified with breathlessness, weakness, despair and anxiety most prevalent. Identifying symptoms’ interaction with BoT framework identified three themes: (1) Symptoms appear to infrequently drive patients to engage in self-care (9.2% of codes), (2) symptoms appear to impede (70.5% of codes) and (3) symptoms form barriers to self-care engagement (20.3% of codes). Symptoms increase illness workload, making completing tasks more difficult; simultaneously, symptoms alter a patient’s capacity, through a reduction in their individual capabilities and willingness to access external resources (ie, hospitals) often with devasting impact on patients’ lives.ConclusionsSymptoms appear to be integral in the patient experience of CHF and BoT, predominately acting to impede patients’ efforts to engage in self-care. Symptoms alter illness workload, increasing complexity and hardship. Patients’ capacity is reduced by symptoms, in what they can do and their willingness to ask for help. Symptoms can lower their perceived self-value and roles within society. Symptoms appear to erode a patient’s agency, decreasing self-value and generalised physical deconditioning leading to affective paralysis towards self-care regimens. Together describing a state of overwhelming BoT which is thought to be a contributor to poor engagement in self-care and may provide new insights into the perceived poor adherence to self-care in the CHF population.PROSPERO registration numberCRD42017077487.

ObjectiveThe current study aims to define patient-centred infertility care (PCIC) from the perspective of Arab women with infertility.DesignSemistructured in-depth telephone interviews.SettingHospitals providing infertility care, Jeddah, Saudi Arabia.ParticipantsArab women who received infertility treatment during the 6 months preceding the interview at any hospital in Jeddah, Saudi Arabia. Interviews were conducted with Arab women experiencing infertility from January 2017 to December 2018. A purposive sample of 14 women were included in the final analysis with maximum variation.ResultsParticipants highlighted nine important PCIC dimensions. Of these, four were agreed on by all participants: accessibility, minimising cost, information and education, and staff attitudes and communication. The remaining five dimensions were staff competence, physical comfort, privacy, psychological and emotional support, and continuity and coordination of care. The concept of PCIC was related to three major contributors: participants’ demographics, patient experience with infertility care and health-seeking behaviour.ConclusionsThe current study provided nine PCIC dimensions and items, which can guide efforts to improve the quality of infertility care in Arab countries in two ways: first, by raising infertility care providers’ awareness of their patients’ needs, and second, by developing a validated tool based on the dimensions for measuring PCIC from Arab patients’ perspective. Clear differences between the Arab and the European PCIC model were found. Our findings concluded that women continued to exhibit basic unmet needs.

ObjectiveThis study aims to advance understanding of globally valid versus country-specific quality dimensions and indicators, as perceived by relevant stakeholders. It specifically addresses patient-level indicators for cataract surgery.DesignA mixed-methods case study comparing Singapore and The NetherlandsSettingSingapore (2017–2019) and The Netherlands (2014–2015).ParticipantsStakeholder representatives of cataract care in Singapore and The Netherlands.InterventionBased on the previously identified complete set of stakeholders in The Netherlands, we identified stakeholders of cataract care in Singapore. Stakeholder representatives then established a multi-stakeholder perspective on the quality of cataract care using a concept mapping approach. This yielded a multidimensional cluster map based on multivariate statistical analyses. Consensus-based quality dimensions were subsequently defined during a plenary session. Thereafter, Singaporean dimensions were matched with dimensions obtained in The Netherlands to identify commonalities and differences.Main outcome measureHealth-services quality dimensions of cataract care.Results19 Singaporean stakeholders representing patients, general practitioners, ophthalmologists, nurses, care providers, researchers and clinical auditors defined health-services quality of cataract care using the following eight dimensions: clinical outcome, patient outcomes, surgical process, surgical safety, patient experience, access, cost and standards of care. Compared with the Dutch results, 61% of the indicators were allocated to dimensions of comparable names and compositions. Considerable differences also existed in the composition of some dimensions and the importance attached to indicators.Conclusions and relevanceThis study on cataract care in Singapore and The Netherlands shows that cataract care quality measurement instruments can share a common international core. At the same time, it emphasises the importance of taking a country-specific multi-stakeholder approach to quality definition and measurement. Complementing an international core set with country-specific measures is required to ensure that the included dimensions and indicators adequately capture the country-specific quality views.

ObjectivesHow general practice is delivered in many countries has drastically changed due to the COVID-19 pandemic. This study aimed to answer the question of how general practice has changed in Ireland in response to COVID-19.DesignThe Irish College of General Practitioners surveyed its membership before and after the global pandemic hit Ireland using a cross-sectional online survey instrument.SettingThis study focuses on primary care, specifically general practice, in Ireland.ParticipantsIn February 2020 before the global pandemic, 526 general practices across Ireland submitted responses to the survey; 538 general practices responded to the second survey during the pandemic in June 2020. This covers 32% and 33% of practices in Ireland, respectively.Main outcome measuresThe type of consultations by general practitioners (GPs) and practice nurses in both surveys is the main outcome measure reported in this paper. Other changes such as the perceived change in attendance by certain patient groups and practice income are also reported.ResultsFace-to-face consultations significantly (pConclusionsIt is likely that the way general practice is delivered will not return to as it was before the COVID-19 pandemic and increased telemedicine can be expected. However, it is necessary to assess the impact of this shift on patient health and to assess healthcare provider and patient experience to ensure continued high-quality care and patient safety.

ObjectivesThe Carefully Selected and Easily Accessible at No charge Medicines randomised controlled trial showed that patients receiving free access to medicines had improved diabetes and hypertension outcomes compared with patients who had usual access to medicines. In this study, we aimed to test the impact of providing free access to medicine to people with diabetes and hypertension on process of care indicators.DesignIn this post hoc analysis of randomised controlled trial findings, we identified process of care indicators for the management of diabetes and hypertension using relevant guidelines. The following process of care indicators were identified for diabetes management: encounters with healthcare professionals, blood pressure measurements, self-monitoring of blood glucose, annual eye and foot examination, annual administration of the influenza vaccine, and laboratory testing for glycated haemoglobin (HbA1c), low-density lipoprotein-cholesterol, serum creatinine and urine albumin to creatinine ratio. We identified the following process of care indicators for hypertension: encounters with healthcare professionals, blood pressure measurements, self-measuring of blood pressure, and serum tests for electrolytes, HbA1c, lipids and creatinine. Chart extractions were performed for all patients and the indicators for diabetes and hypertension were recorded. We compared the indicators for patients in each arm of the trial.ResultsThe study included 268 primary care patients. Free distribution of medicines may improve self-monitoring behaviours (adjusted rate ratio (aRR) 1.30; 95% CI 0.66 to 2.57) and reduce missed primary care appointments for patients with diabetes (aRR 0.80; 95% CI 0.48 to 1.33) or hypertension (aRR 0.41; 95% CI 0.18 to 0.90). Free distribution may also reduce primary care and consultant appointments and laboratory testing in patients with hypertension.ConclusionsImproving medicine accessibility for patients with diabetes and hypertension not only improves surrogate health outcomes but also improves the patient experience and may also reduce healthcare costs by encouraging self-monitoring.Trial registration numberThe randomised controlled trial mentioned is clinicaltrials.gov identifier: NCT02744963.

IntroductionIn Europe, the social inequalities in perinatal health are usually found to be to the disadvantage of non-European immigrants and women with lower levels of education and income. Among the possible underlying mechanisms are inadequate access to healthcare services and suboptimal care. To explore this hypothesis in the Belgian context, our research will describe detailed maternal socioeconomic and migration characteristics, explore how these factors relate to each other, and how they relate to women’s perinatal care trajectories and experiences of care.MethodsUsing a modified version of the Migrant-Friendly Maternity Care Questionnaire, we will survey 900 mothers of Belgian nationality or a nationality from a North or Sub-Saharan African country, and having given birth in four maternity wards in Brussels. The questionnaire has been adapted to the study objectives and the Belgian context. Interviewers will administer the 116-item questionnaire to all women agreeing to participate and meeting inclusion criteria, within 14 days of having given birth. Clinical information will be extracted from hospital records.AnalysisWe will estimate the associations of women’s socioeconomic and migration characteristics with:Women’s antenatal care trajectories (timing of first antenatal consultation, minimum recommended number of consultations, and problems accessing care).Obstetric practices such as episiotomies, emergency caesarean sections, and inductions.Patient experience such as feelings of discrimination, respect, and understanding of information.We will use descriptive statistics, multiple correspondence analysis, and simple and multiple logistic regressions.Ethics and disseminationEthical approval has been obtained from the hospital Ethics Committees and from the Université libre de Bruxelles (No: P2017/055/B406201730877). Written informed consent will be sought from all participants.In addition to disseminating findings and recommendations to the scientific community through open-source journal articles and conferences, we will also address local organisations and healthcare professionals via a written report and seminars.

ObjectiveA number of studies have explored delayed help-seeking practices for acute coronary syndrome (ACS) and have indentified multiple intersecting factors which may play a role, for example, attributing symptoms, age, gender, ethnicity and contextual influences. However, the pathway to diagnosis for suspected coronary heart disease (CHD) symptoms in a rapid access chest pain clinic (RACPC) context is underexplored. The objective of this study was to examine patients’ help-seeking experiences of accessing RACPC services, from the point at which they notice and interpret symptoms, to their decision to seek help from their general practitioner.DesignQualitative study.SettingInterviews were conducted in the RACPC at Queen Mary’s Roehampton Hospital, London, UK.ParticipantsMaximum variation sampling was used to recruit 30 participants (15 men and 15 women) referred to a RACPC, using sampling dimensions of age, ethnicity and occupation.MethodsSemi-structured interviews focussed on the patient experience of their pathway to the RACPC. Thematic analysis was used to analyse the interview data.ResultsParticipant interpretation of symptoms was shaped by multiple influences; reluctance to seek help contributed to delay; various factors acted as drivers as well as barriers to help-seeking; and GP referrals to RACPC were based on symptoms as well as patients’ need for reassurance.ConclusionWe found complex issues shaped the patient’s decision-making when accessing the RACPC, including making sense of symptoms and help-seeking practices. These findings can be used to develop health promotion literature to encourage early help-seeking and improve RACPC services.

ObjectiveTo study if patient-related factors are associated with patient-evaluated quality of care in surgery. To examine if there is an association with postoperative complications and patient-evaluated low quality of care.DesignA correlation cross-sectional study, in addition, a phone call interview at 30 days postoperatively to examine complications.SettingThe data on patients admitted for non-cardiac general and orthopaedic surgery at a central hospital in Southwestern Finland were collected in two phases during an 8-month period.Participants436 consecutive consenting and eligible in-ward non-cardiac general surgery and orthopaedic surgery adult patients. Ambulatory, paediatric and memory disorder patients were excluded. 378 patients completed the questionnaire (Good Nursing Care Scale for Patients (GNCS-P)).MethodsPerceived quality of care was examined by the GNCS-P questionnaire. Patient-related factors were obtained from electronic patient records and questionnaire. A telephone interview related to postdischarge complications was conducted 30 days after discharge.Main outcome measuresPatient evaluation of quality of care at discharge, its association with patient-related factors and patient-reported postdischarge complications.ResultsThe overall quality was evaluated high or very high by the patients. The lowest overall quality of care rate was assessed by surgical patients living alone (p=0.0088) and patients who evaluated their state of health moderate or poor (p=0.0047). Surgical patients reporting postoperative complications after discharge evaluated lower overall quality of care (p=0.0105) than patients with no complications.ConclusionPatient demographic factors do not seem to influence the perceptions of the quality of care. Instead, subjective state of health and living conditions (living alone) may have an influence on the patient experience of quality of care. The perceived quality of care in healthcare staff technical and communication skills may have an association with reported postoperative complications.

BackgroundTo develop items for an early warning score (RECAP: REmote COVID-19 Assessment in Primary Care) for patients with suspected COVID-19 who need escalation to next level of care.MethodsThe study was based in UK primary healthcare. The mixed-methods design included rapid review, Delphi panel, interviews, focus groups and software development. Participants were 112 primary care clinicians and 50 patients recovered from COVID-19, recruited through social media, patient groups and snowballing. Using rapid literature review, we identified signs and symptoms which are commoner in severe COVID-19. Building a preliminary set of items from these, we ran four rounds of an online Delphi panel with 72 clinicians, the last incorporating fictional vignettes, collating data on R software. We refined the items iteratively in response to quantitative and qualitative feedback. Items in the penultimate round were checked against narrative interviews with 50 COVID-19 patients. We required, for each item, at least 80% clinician agreement on relevance, wording and cut-off values, and that the item addressed issues and concerns raised by patients. In focus groups, 40 clinicians suggested further refinements and discussed workability of the instrument in relation to local resources and care pathways. This informed design of an electronic template for primary care systems.ResultsThe prevalidation RECAP-V0 comprises a red flag alert box and 10 assessment items: pulse, shortness of breath or respiratory rate, trajectory of breathlessness, pulse oximeter reading (with brief exercise test if appropriate) or symptoms suggestive of hypoxia, temperature or fever symptoms, duration of symptoms, muscle aches, new confusion, shielded list and known risk factors for poor outcome. It is not yet known how sensitive or specific it is.ConclusionsItems on RECAP-V0 align strongly with published evidence, clinical judgement and patient experience. The validation phase of this study is ongoing.Trial registration numberNCT04435041.

IntroductionThe patient experience is a critical dimension of colonoscopy quality. Sedative and analgesic drugs are commonly used to improve the patient experience of colonoscopy, with predominant regimens being deep sedation, typically achieved with propofol, and moderate sedation, typically achieved with an opioid and a benzodiazepine. However, non-pharmacological interventions exist that may be used to improve patient experience. Furthermore, by identifying non-pharmacological interventions to increase the quality of patient experience under moderate sedation, jurisdictions facing rising use of deep sedation for colonoscopy and its significant associated costs may be better able to encourage patients and clinicians to adopt moderate sedation. Advancing either of these aims requires synthesising the evidence and raising awareness around these non-pharmacological interventions to improve the patient experience of colonoscopy.Methods and analysisA systematic review will be conducted that searches multiple electronic databases from inception until 2020 to identify randomised controlled trials evaluating what, if any, non-pharmacological interventions are effective compared with placebo or usual care for improving the patient experience of routine colonoscopy under moderate or no sedation. Two reviewers will independently perform a three-stage screening process and extract all study data using piloted forms. Study quality will be assessed using the Cochrane Risk of Bias Tool V.2.0. Where multiple studies evaluate a single intervention, evidence will be quantitatively synthesised using pairwise meta-analysis, otherwise narrative syntheses will be undertaken.Ethics and disseminationThis is a review of existing literature not requiring ethics approval. The review findings will be included in future efforts to develop an implementation strategy to reduce the use of deep sedation for routine colonoscopy. They will also be published in a peer-reviewed journal, presented at conferences and contribute to a doctoral thesis.PROSPERO registration numberCRD42020173906.

ObjectivesTo understand from a patient and carer perspective: (1) what features of the discharge process could be improved to avoid early unplanned hospital readmission (within 72 hours of acute care discharge) and (2) what elements of discharge planning could have enhanced the discharge experience.DesignA qualitative descriptive design was used. Study data were collected using semi-structured interviews that were transcribed verbatim and analysed using inductive thematic analysis. Data related to participant characteristic were collected by medical record audit and summarised using descriptive statistics.SettingThree acute care hospitals from one health service in Australia.ParticipantsPatients who had an early unplanned hospital readmission and/or their carers, if present during the interviews and willing to participate, with patient permission.FindingsThirty interviews were conducted (23 patients only; 6 patient and carer dyads; 1 carer only). Five themes were constructed: ‘experiences of care’, ‘hearing and being heard’, ‘what’s wrong with me’, ‘not just about me’ and ‘all about going home’. There was considerable variability in patients’ and carers’ experiences of hospital care, discharge processes and early unplanned hospital readmission. Features of the discharge process that could be improved to potentially avoid early unplanned hospital readmission were better communication, optimal clinical care including ensuring readiness for discharge and shared decision-making regarding discharge timing and goals on returning home. The discharge experience could have been enhanced by improved communication between patients (and carers) and the healthcare team, not rushing the discharge process and a more coordinated approach to patient transport home from hospital.ConclusionsThe study findings highlight the complexities of the discharge process and the importance of effective communication, shared decision-making and carer engagement in optimising hospital discharge and reducing early unplanned hospital readmissions.

ObjectiveTo develop a multidimensional framework representing patients’ perspectives on comfort to guide practice and quality initiatives aimed at improving patients’ experiences of care.DesignTwo-stage qualitative descriptive study design. Findings from a previously published synthesis of 62 studies (stage 1) informed data collection and analysis of 25 semistructured interviews (stage 2) exploring patients’ perspectives of comfort in an acute care setting.SettingCardiac surgical unit in New Zealand.ParticipantsCulturally diverse patients in hospital undergoing heart surgery.Main outcomesA definition of comfort. The Comfort ALways Matters (CALM) framework describing factors influencing comfort.ResultsComfort is transient and multidimensional and, as defined by patients, incorporates more than the absence of pain. Factors influencing comfort were synthesised into 10 themes within four inter-related layers: patients’ personal (often private) strategies; the unique role of family; staff actions and behaviours; and factors within the clinical environment.ConclusionsThese findings provide new insights into what comfort means to patients, the care required to promote their comfort and the reasons for which doing so is important. We have developed a definition of comfort and the CALM framework, which can be used by healthcare leaders and clinicians to guide practice and quality initiatives aimed at maximising comfort and minimising distress. These findings appear applicable to a range of inpatient populations. A focus on comfort by individuals is crucial, but leadership will be essential for driving the changes needed to reduce unwarranted variability in care that affects comfort.

ObjectivesClinicians are facing increasing demands on their time, exacerbated by fiscal constraints and increasing patient complexity. Volunteers are an essential part of the many healthcare systems, and are one resource to support improved patient experience and a mechanism through which to address unmet needs. Hospitals rely on volunteers for a variety of tasks and services, but there are varying perceptions about volunteers’ place within the healthcare team. This study aimed to understand the role of volunteers in stroke rehabilitation, as well as the barriers to volunteer engagement.DesignA qualitative case study was conducted to understand the engagement of volunteers in stroke rehabilitation services within a complex rehabilitation and continuing care hospital in Ontario, Canada.Participants28 clinicians, 10 hospital administrators and 22 volunteers participated in concurrent focus groups and interviews. Organisational documents pertaining to volunteer management were retrieved and analysed.ResultsWhile there was support for volunteer engagement, with a wide range of potential activities for volunteers, several barriers to volunteer engagement were identified. These barriers relate to paid workforce/unionisation, patient safety and confidentiality, volunteer attendance and lack of collaboration between clinical and volunteer resource departments.ConclusionsAn interprofessional approach, specifically emphasising and addressing issues related to key role clarity, may mediate these barriers. Clarity regarding the role of volunteers in hospital settings could support workforce planning and administration.

ObjectivesTo ascertain the relationship between online patient feedback and the General Practice Patient Survey (GPPS) and the Friends and Family Test (FFT). To consider the potential benefit it may add by describing the content of public reviews found on NHS Choices for all general practices in one Clinical Commissioning Group in England.DesignMultimethod study using correlation and thematic analysis.Setting1396 public online reviews and ratings on NHS Choices for all General Practices (n=70) in Oxfordshire Clinical Commissioning Group in England.ResultsSignificant moderate correlations were found between the online patient feedback and the GPPS and the FFT. Three themes were developed through the qualitative analysis: (1) online feedback largely provides positive reinforcement for practice staff; (2) online feedback is used as a platform for suggesting service organisation and delivery improvements; (3) online feedback can be a source of insight into patients’ expectations of care. These themes illustrate the wide range of topics commented on by patients, including their medical care, relationships with various members of staff, practice facilities, amenities and services in primary care settings.ConclusionsThis multimethod study demonstrates that online feedback found on NHS Choices is significantly correlated with established measures of quality in primary care. This suggests it has a potential use in understanding patient experience and satisfaction, and a potential use in quality improvement and patient safety. The qualitative analysis shows that this form of feedback contains helpful information about patients’ experiences of general practice that provide insight into issues of quality and patient safety relevant to primary care. Health providers should offer patients multiple ways of offering feedback, including online, and should have systems in place to respond to and act on this feedback.

ObjectiveThis study aimed to investigate factors associated with patient experience with primary care in a large public health system in Mexico and determine the amount of variability in experience attributable to facility-level and state-level factors.MethodsWe analysed cross-sectional 2016 national satisfaction survey data from the Mexican Social Security Institute (IMSS). Patient-level data were merged with facility-level data and information on poverty by state. We assessed general contextual effects and examined the relationship of patient, facility and state factors with four patient experience measures using random effects logistic regression.Results25 745 patients’ responses from 319 facilities were analysed. The majority experienced good communication (78%), the opportunity to share health concerns (91%) and resolution of doubts (85%). 29% of visits were rated as excellent. Differences between facilities and states accounted for up to 12% and 6% of the variation in patient experience, respectively. Inclusion of facility-level contextual effects improved model predictions by 8%–12%; models with facility random effects and individual covariates correctly predicted 64%–71% of individual outcomes. In adjusted models, larger patient population was correlated with worse reported communication, less opportunity to share concerns and less resolution of doubts. Men reported more positive communication; older individuals reported more positive communication and experiences overall, but less opportunity to share concerns; and more educated individuals were less likely to report positive communication but more likely to report resolution of doubts and overall positive experiences. Preventive care visits were rated higher than curative visits for resolution of doubts, but lower for opportunity to share concerns, and specific conditions were associated with better or worse reported experiences in some cases.ConclusionQuality improvement efforts at IMSS facilities might bolster individual experiences with primary care, given that up to 12% of the variation in experience was attributable to facility-level differences. The relationship between individual characteristics and experience ratings reinforces the importance of patients’ expectations of care and the potential for differential treatment by providers to impact experience.

ObjectiveTo explore patients’ experience of receiving pain relief injection for suspected hip fracture from paramedics at the location of the injury.DesignQualitative interviews within a feasibility trial about an alternative to routine prehospital pain management for patients with suspected hip fracture.SettingPatients treated by paramedics in the catchment area of one emergency department in South Wales.ParticipantsSix patients and one carer of a patient who received fascia iliaca compartment block (FICB).InterventionFICB administered to patients with suspected hip fracture by trained paramedics. We randomly allocated eligible patients to FICB—a local anaesthetic injection directly into the hip region—or usual care—most commonly morphine—using audited scratch cards.OutcomesAcceptability and experience of receiving FICB, assessed through interview data. We audio-recorded, with participants’ consent, and conducted thematic analysis of interview transcripts. The analysis team comprised two researchers, one paramedic and one lay member.ResultsPatients had little or no memory of being offered, consenting to or receiving FICB. They recalled the reassuring manner and high quality of care received. They accepted FICB without question. Partial or confused memory characterised experience of subsequent hospital care until surgery. They said their priorities when calling for emergency help were to receive effective care. After hospital treatment, they wanted to regain their health and mobility and resume the quality of life they experienced before their injury.ConclusionsThis study did not raise any concerns about the acceptability of FICB administered at the scene of injury by paramedics to people with suspected hip fracture. It adds to existing evidence about patient and carer experience of on-scene care for people with suspected hip fracture. Further research is needed to assess safety, effectiveness and cost effectiveness of this health technology in a new setting.Trial registration numberNCT60065373.

Objectives: Hip and knee replacements are common major elective surgical interventions with over 200,000 performed annually in the UK. Not all patients achieve optimal outcomes or experience problems or delays in recovery. The number of patients needing these operations are set to increase and routine clinical monitoring is time and resource consuming for patients and healthcare providers, therefore innovative evaluation of surgical outcomes are needed. The aim of this qualitative study was to capture the patient experience of living with a novel home monitoring sensing system during the period around joint replacement. \ud \ud Setting: One secondary care hospital in the South West, UK\ud \ud Participants: 13 patients, (8 female, 63-89y) undergoing total hip or knee replacement enrolled into the study \ud \ud Design: Qualitative study with thematic analysis. The system remained in situ for up to 12 weeks after their surgery and comprised a group of low powered sensors monitoring the environment (temperature, light and humidity) and activity of people within the home. Patients were interviewed at two timepoints: before and after surgery. Interviews explored views about living with the technology, its acceptability as well as attitudes towards health technology. \ud \ud Results: Three main themes emerged: installation of home sensing technology on the journey to surgery; the home space and defining unobtrusiveness and pivotal role of social support networks\ud \ud Conclusions: Patients who agreed to the technology found living with it acceptable. A home sensing system that monitors the environment and activity of the people in the home could provide an innovative way of assessing patients’ surgical outcomes. At a time, characterised by reduced mobility, functional limitations and increased pain, patients in this study relied on informal and formal supportive networks to help maintain the system through the busy trajectory of the perioperative period. \ud \ud \ud Strengths and limitations of this study\ud • In-depth one-to-one interviews provided insight into patients’ real experiences and views as they lived with the technology in their own homes\ud • Although the sample size was small, lacked ethnic diversity and only included people willing to have technology installed in their homes, there was good diversity in age and gender and some diversity in patients undergoing hip and knee replacement \ud • Use of thematic analysis enabled robust analysis of data, including focus on the acceptability of the technology in real health-related circumstances.

ObjectivesThis paper explores patient experiences and identifies barriers and opportunities for improving access to healthcare for patients from the Canadian north who travel to receive medical care in a Southern province.DesignA mixed-methods, cross-sectional study involved one-on-one interviews, focus group discussions and key informant interviews.Participants52 one-on-one interviews with Northwest Territories (NWT) patients and patient escorts and two focus group discussions (n=10). Fourteen key informant interviews were conducted with health workers, programme managers and staff of community organisations providing services for out-of-province patients. A Community Advisory Board guided the development of the questionnaires and interpretation of results.ResultsRespondents were satisfied with the care received overall, but described unnecessary burdens and bureaucratic challenges throughout the travel process. Themes relating to access to healthcare included: plans and logistics for travel; level of communication between services; clarity around jurisdiction and responsibility for care; indirect costs of travel and direct costs of uninsured services; and having a patient escort or advocate available to assist with appointments and navigate the system. Three themes related to healthcare experiences included: cultural awareness, respect and caring, and medical translation. Respondents provided suggestions to improve access to care.ConclusionsPatients from NWT need more information and support before and during travel. Ensuring that medical travellers and escorts are prepared before departing, that healthcare providers engage in culturally appropriate communication and connecting travellers to support services on arrival have the potential to improve medical travel experiences.

ObjectivesCompassion is a key indicator of quality care that is reportedly eroding from patients’ care experience. While the need to assess compassion is recognised, valid and reliable measures are lacking. This study developed and validated a clinically informed, psychometrically rigorous, patient-reported compassion measure.DesignData were collected from participants living with life-limiting illnesses over two study phases across four care settings (acute care, hospice, long term care (LTC) and homecare). In phase 1, data were analysed through exploratory factor analysis (EFA), with the final items analysed via confirmatory factor analysis (CFA) in phase 2. The Schwartz Center Compassionate Care Scale (SCCCS), the revised Edmonton Symptom Assessment Scale (ESAS-r) and Picker Patient Experience Questionnaire (PPEQ) were also administered in phase 2 to assess convergent and divergent validity.Setting and participants633 participants were recruited over two study phases. In the EFA phase, a 54-item version of the measure was administered to 303 participants, with 330 participants being administered the final 15-item measure in the CFA phase.ResultsBoth EFA and CFA confirmed compassion as a single factor construct with factor loadings for the 15-item measure ranging from 0.76 to 0.86, with excellent test–retest reliability (intraclass correlation coefficient range: 0.74–0.89) and excellent internal reliability (Cronbach’s alpha of 0.96). The measure was positively correlated with the SCCCS (r=0.75, pConclusionsThere is strong initial psychometric evidence for the Sinclair Compassion Questionnaire (SCQ) as a valid and reliable patient-reported compassion measure. The SCQ provides healthcare providers, settings and administrators the means to routinely measure patients experiences of compassion, while providing researchers a robust measure to conduct high-quality research.

ObjectivesPatient experience is being widely considered in the evaluation of healthcare service quality, which is a key target for public hospitals under China’s New Healthcare Reform. This study aimed to illustrate patients’ experiences in county-level public hospitals, and identify aspects that need to be improved.Setting and participantsBetween 2016 and 2018, a cross-sectional study with 500 outpatients and 800 inpatients was conducted in 10 county-level public hospitals from Shandong Province, Hubei Province and Chongqing Municipality.MethodA three-part questionnaire was used to evaluate patients’ experiences during their visits to hospitals. It comprised a questionnaire for basic information, the Picker Patient Experience (PPE-15) Questionnaire and the overall evaluation (a 3-point Likert scale to express patients’ satisfaction and patient loyalty). Patients’ experiences were classified according to six dimensions (information transmission and patient education, respect for patient preference, emotional support, physical comfort, involvement of family or friends and continuity of medical service). Both univariate and multivariate analyses were performed to evaluate patient experience.ResultsA total of 1241 valid questionnaires were analysed. The mean PPE-15 score was 41.33 (range, 23–56). The better the patient experience and satisfaction, the higher the patient loyalty (pConclusionsHospital managers and staff members should pay close attention to the preferences of patients and their families to improve patient experience.

ObjectivesTreatment of open fractures is complex and patients may require muscle and skin grafts. The aim of this study was to gain a greater understanding of patient experience of recovery from open fracture of the lower limb 2–4 years postinjury.DesignA phenomenological approach was used to guide the design of the study. Interviews took place between October 2016 and April 2017 in the participants’ own homes or via telephone.SettingEngland, UK.ParticipantsA purposive sample of 25 patients were interviewed with an age range of 26–80 years (median 51), 19 were male and six female, and time since injury was 24–49 months (median 35 months).ResultsThe findings identified a focus on struggling to recover as participants created a new way of living, balancing moving forward with accepting how they are, while being uncertain of the future and experiencing cycles of progress and setbacks. This was expressed through three themes: (i) ‘being disempowered’ with the emotional impact of dependency and uncertainty, (ii) ‘being changed’ and living with being fragile and being unable to move freely and (iii) ‘being myself’ with a loss of self, feeling and looking different, alongside recreation of self in which they integrated the past, present and future to find meaningful ways of being themselves.ConclusionThis study identified the long-term disruption caused by serious injury, the hidden work of integration that is required in order to move forward and maximise potential for recovery. Supportive strategies that help people to self-manage their everyday emotional and physical experience of recovery from injury are required. Research should focus on developing and testing effective interventions that provide support and self-management within a holistic rehabilitation plan.Trial registration numberCurrent Controlled TrialsISRCTN33756652; Post-results.

ObjectiveTo examine the forms, scale and role of community and voluntary support for community hospitals in England.DesignA multimethods study. Quantitative analysis of Charity Commission data on levels of volunteering and voluntary income for charities supporting community hospitals. Nine qualitative case studies of community hospitals and their surrounding communities, including interviews and focus groups.SettingCommunity hospitals in England and their surrounding communities.ParticipantsCharity Commission data for 245 community hospital Leagues of Friends. Interviews with staff (89), patients (60), carers (28), volunteers (35), community representatives (20), managers and commissioners (9). Focus groups with multidisciplinary teams (8 groups across nine sites, involving 43 respondents), volunteers (6 groups, 33 respondents) and community stakeholders (8 groups, 54 respondents).ResultsCommunities support community hospitals through: human resources (average=24 volunteers a year per hospital); financial resources (median voluntary income = £15 632); practical resources through services and activities provided by voluntary and community groups; and intellectual resources (eg, consultation and coproduction). Communities provide valuable supplementary resources to the National Health Service, enhancing community hospital services, patient experience, staff morale and volunteer well-being. Such resources, however, vary in level and form from hospital to hospital and over time: voluntary income is on the decline, as is membership of League of Friends, and it can be hard to recruit regular, active volunteers.ConclusionsCommunities can be a significant resource for healthcare services, in ways which can enhance patient experience and service quality. Harnessing that resource, however, is not straight forward and there is a perception that it might be becoming more difficult questioning the extent to which it can be considered sustainable or ‘renewable’.

ObjectivesThis study aimed to investigate the experience of patients with wet age-related macular degeneration (wAMD) in treatment decision-making process.DesignA descriptive qualitative study was designed by using semistructured interviews, and the data analysis was conducted with the thematic analysis approach.Participants and settingA convenient and purposive sample of 21 participants diagnosed with wAMD was recruited from May 2018 to September 2018. The study was conducted in the Eye Clinic of Southwest Hospital of Army Medical University in Chongqing located in the southwest of China.ResultsThe mean age of the participants was 64.48 years (ranging 50–81 years), and the duration of the disease ranged from 6 months to 48 months. Four major themes were identified from the original data analysis. These themes included facing the darkness (choosing from light and darkness and living in pain), constraints on decision making (doctor-oriented decision making, inadequacy of options and time), weighing alternatives (family influence, financial burden and maintaining social function) and decision-making support (professional decision-making assistance and peer support).ConclusionThis is a qualitative study attempting to explore the patient experience of treatment decision making for wAMD disease in China. Previous literature has focused on treatment effect and symptoms, rather than the individual experience and the wide contexts from a sociocultural perspective. Further studies, such as cross-sectional studies, can be used to describe the status and determine the influencing factors of decision0making process, so as to develop an impact factor model of decision making and to formulate an intervention for patients with wAMD.

ObjectivesChina launched the National Healthcare Improvement Initiative (NHII) in 2015 to improve patient experiences in healthcare. This study aimed to generate evidence of hospital care quality from the patients’ perspective.DesignThis nationwide cross-sectional study interviewed participants from 31 provinces, municipalities and autonomous regions across China.SettingA total of 117 tertiary hospitals in mainland China.Participants48 422 responses from outpatients and 35 957 responses from inpatients were included in this study.Primary outcome measureThe scores of six predefined domains in the Chinese Patient Experience Questionnaire, five of which were designed to reflect specific dimensions of care, and one of which indicated the overall rating.ResultsMore than 80% of the respondents viewed their care experiences as positive. The NHII seems to have had a positive impact, as indicated by the steady, although unremarkable, increase in the patient experience scores over the 2016–2018 period. The Chinese patients generally reported a positive experience with the clinical aspects of care, but reported a less positive experience with the environmental, interpersonal and social services aspects of care. The institutional factors, including region and type of hospital, and personal factors, such as gender, age, education and occupation, were factors affecting the patient experience in China. Humanistic care was the aspect of care with the greatest association with the overall patient experience rating in both the outpatient and inpatient settings.ConclusionsThe national survey indicated an overall positive patient perspective of care in China. Older age, higher education level and formal employment status were found to be correlated with positive care experiences, as were higher levels of economic development of the region, a more generous insurance benefits package and a higher degree of coordinated care. The interpersonal-related initiatives had substantial roles in the improvement of the patient experience. In the regions where farmers and users of traditional Chinese medicine services constitute a greater proportion of the population, improvement of patient experiences for these groups deserves special policy attention.

ObjectiveThe prevalence of type 2 diabetes mellitus (T2DM) is increasing globally and there is critical need develop interventions to improve health outcomes among older people. The Group Appointments in Primary Care (GAP) study was a randomised controlled trial designed to test the efficacy of a group and team-based medical visit programme to lower haemoglobin A1c among patients with T2DM. We aimed to understand the barriers and facilitators to implement the GAP intervention within a primary care setting, with an emphasis on patient experience.Research design and methodsThis was a qualitative exploratory study. Data were gathered from semistructured interviews conducted with the first cohort of GAP study participants (n=15) at baseline and intervention completion. GAP participants were aged >65, diagnosed with T2DM and from one primary care clinic. The interview questions identified the patient perspectives and factors relating to their attendance at seven group medical visits that were part of the intervention programme. Data were analysed using framework analysis.ResultsWe identified four themes that captured participants’ experiences: (1) Education: learning with professionals, learning with one another; (2) Social Support: common interests, common problems; (3) Setting: ease of location, ease of conversation and (4) Impact: expectations met, empowerment gained. The GAP intervention increased participants’ self-reported diabetes literacy and self-management skills.ConclusionsWe learnt that: accessible community centres, not primary care offices, were the ideal location for GAP; the consistent leadership of the primary care physician was valued by participants; and, the content related to exercise and healthy diet were viewed as impactful. Also, learning was achieved through content delivered by clinical experts, and by T2DM experts with lived experience—the GAP peers. Our findings highlight the important role of group learning.Trial registration numberNCT02002143

ObjectiveWe aimed to describe patients’ views of a new referral pathway of general practitioner (GP) direct access to MRI, versus imaging after referral to a specialist.DesignThis qualitative study involved 20 semistructured interviews. Twenty patients (10 from each pathway) were purposively recruited and interviewed to describe their attitudes.SettingA neurology headache clinic and neuroradiology services from the boroughs of Southwark and Lambeth in South London, UK.ParticipantsTwenty patients were involved in this study.ResultsOver half of the participants felt relieved once they received their scan results, while some remained uncertain about the underlying cause of their symptoms. Some participants described a long wait to see a specialist. Others described a long wait time to receive scan results, especially from their GP. Spontaneous reduction in headache symptoms occurred for some participants and for others, normal imaging results allowed them to focus more on symptom management.ConclusionRelief was reported especially when scan results had been explained clearly and without too much delay. Those with continuing pain focused on how to get relief from symptoms. Patient experience might be improved with clearer information from GPs about how patients can access results, standard reporting procedures and closer liaison between neuroradiology and GPs.

ObjectivesTo assess the degree to which variations in publicly reported hospital scores arising from the English Cancer Patient Experience Survey (CPES) are subject to chance.DesignSecondary analysis of publically reported data.SettingEnglish National Health Service hospitals.Participants72 756 patients who were recently treated for cancer in one of 146 hospitals and responded to the 2016 English CPES.Main outcome measuresSpearman-Brown reliability of hospital scores on 51 evaluative questions regarding cancer care.ResultsHospitals varied in respondent sample size with a median hospital sample size of 419 responses (range 31–1972). There were some hospitals with generally highly reliable scores across most questions, whereas other hospitals had generally unreliable scores (the median reliability of question scores within individual hospitals varied between 0.11 and 0.86). Similarly, there were some questions with generally high reliability across most hospitals, whereas other questions had generally low reliability. Of the 7377 individual hospital scores publically reported (146 hospitals by 51 questions, minus 69 suppressed scores), only 34% reached a reliability of 0.7, the minimum generally considered to be useful. In order for 80% of the individual hospital scores to reach a reliability of 0.7, some hospitals would require a fourfold increase in number of respondents; although in a few other hospitals sample sizes could be reduced.ConclusionsThe English Patient Experience Survey represents a globally unique source for understanding experience of a patient with cancer; but in its present form, it is not reliable for high stakes comparisons of the performance of different hospitals. Revised sampling strategies and survey questions could help increase the reliability of hospital scores, and thus make the survey fit for use in performance comparisons.

DesignA qualitative study informed by grounded theory principles to explore the experiences of parents who had extremely preterm or babies with antenatally diagnosed life-threatening diagnoses who were cared for in a regional tertiary neonatal unit. The study was conducted when the child was old enough to be diagnosed with long-term neurodevelopmental or medical sequelae.SettingNorth Queensland is a large area in Eastern Australia of 500 000 km2, which is served by one tertiary neonatal unit.ParticipantsSeventeen families representing 21 extremely preterm babies and one baby with congenital malformations who was not expected to survive prior to delivery (but did) were interviewed using grounded theory principles. Interviews were coded and themes derived.ResultsParents who recollect their neonatal experiences from 3 to 7 years after the baby was cared for in the neonatal intensive care described negative themes of grief and loss, guilt and disempowerment. Positive enhancers of care included parental strengths, religion and culture, family supports and neonatal unit practices. Novel findings included that prior pregnancy loss and infertility formed part of the narrative for parents, and hope was engendered by religion for parents who did not usually have a religious faith.ConclusionsAn understanding of both the negative aspects of neonatal care and the positive enhancers is necessary to improve the neonatal experience for parents. Parents are able to contextualise their previous neonatal experiences within both the long-term outcome for the child and their own life history.

ObjectivesThis study aimed to explore healthcare professionals’ (HCPs’) perspectives of asthma through their drawings, and their responses when viewing patients’ drawings of their experiences of asthma.DesignA qualitative exploratory study with a purposive, convenience sample of participants. Participants were asked to first express their perspectives of asthma in a drawing, which was followed by a review of drawings made by patients with asthma.SettingPrimary and tertiary HCPs from Sydney, Australia.ParticipantsTwenty-three HCPs from a range of health professions.ResultsThe HCPs illustrated their perspective of asthma through drawings which were largely biomedically framed, depicting physiological and clinical aspects of asthma. In contrast, their discussion around the patients’ drawings centred on the person more than the condition. The patients’ drawings triggered the HCPs to revisit their personal expectations of their patients’ illness experience; prompted differing degrees of acknowledgement and empathy regarding the patient experience; and encouraged clinical reflexivity.ConclusionsOur findings provide support for the educational application of patients’ drawings in bringing HCPs closer to the patient lived experience. The drawings fostered deeper insight into patient perspectives of asthma and stimulated critical reflection on current healthcare practices.

ObjectivesHealth system responsiveness is a complicated issue that guides researchers wishing to design an efficient methodology for enhancing understanding of perspectives regarding healthcare systems. This study examined the relationship between patient experience profiles and satisfaction with expectations of treatment effects.DesignThis was a cross-sectional study. We used eight items obtained from latent class analysis to develop patient experience profiles.SettingPrimary care users in Taiwan.ParticipantsThis study conducted an annual National Health Insurance survey in Taiwan and sampled from those who had experience with the medical service in primary care clinics in 2015.Primary outcome measureRespondents were asked to indicate the extent of their satisfaction with their expectation of treatment effects (or symptom improvement).ResultsThe proportions of participants in groups 1–4 were 34%, 24%, 29% and 12%, respectively. Patients in good health were more satisfied with their expectations of treatment effects (OR 1.639, p=0.007). Furthermore, group 4 (-eAll) were less satisfied with their expectations of treatment effects than those in the other three groups (ORs: group 1 (+eAll): 9.81, group 2 (-CwR): 4.14 and group 3 (-CnR): 4.20).ConclusionsThe results revealed that experiences of poor accessibility and physician–patient relationships affected the patients’ expectations. Therefore, greater accessibility and more positive physician–patient relationships could lead to higher patient satisfaction with their expectations of treatment effects. Furthermore, the findings could assist authorities in targeting specific patients, with the objective of improving their healthcare service experience. They could also serve as a mechanism for improving the quality of healthcare services and increase accountability in healthcare practices.

ObjectivesTo investigate the deployment of physician associates (PAs); the factors supporting and inhibiting their employment and their contribution and impact on patients’ experience and outcomes and the organisation of services.DesignMixed methods within a case study design, using interviews, observations, work diaries and documentary analysis.SettingSix acute care hospitals in three regions of England in 2016–2017.Participants43 PAs, 77 other health professionals, 28 managers, 28 patients and relatives.ResultsA key influencing factor supporting the employment of PAs in all settings was a shortage of doctors. PAs were found to be acceptable, appropriate and safe members of the medical/surgical teams by the majority of doctors, managers and nurses. They were mainly deployed to undertake inpatient ward work in the medical/surgical team during core weekday hours. They were reported to positively contribute to: continuity within their medical/surgical team, patient experience and flow, inducting new junior doctors, supporting the medical/surgical teams’ workload, which released doctors for more complex patients and their training. The lack of regulation and attendant lack of authority to prescribe was seen as a problem in many but not all specialties. The contribution of PAs to productivity and patient outcomes was not quantifiable separately from other members of the team and wider service organisation. Patients and relatives described PAs positively but most did not understand who and what a PA was, often mistaking them for doctors.ConclusionsThis study offers new insights concerning the deployment and contribution of PAs in medical and surgical specialties in English hospitals. PAs provided a flexible addition to the secondary care workforce without drawing from existing professions. Their utility in the hospital setting is unlikely to be completely realised without the appropriate level of regulation and authority to prescribe medicines and order ionising radiation within their scope of practice.

ObjectiveTransitional care is important to successful hospital discharge. Providing patients with a clear and concise summary of medication-related information can help improve outcomes, in particular, among older adults. The present study aimed to propose a framework for the development of salient medication reminders (SMR), which include drug-related risks and precautions, using the Delphi process.DesignIdentification of potential SMR statements for 80% of medication types used by older adult patients discharged from geriatric medicine departments, followed by a Delphi survey and expert panel discussion.SettingsMedical and geriatric departments of public hospitals in Hong Kong.ParticipantsA panel of 13 geriatric medical experts.Outcome measureA Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree) points, scoring item relevance, importance and clarity. The minimum of 70% consensus was required for each statement to be included.ResultsThe expert panel achieved consensus through the Delphi process on 80 statements for 44 medication entities. Subsequently, the SMR steering group endorsed the inclusion of these statements in the SMR to be disseminated among older adults at the time of discharge from geriatric medicine departments.ConclusionsThe Delphi process contributed to the development of SMR for older adult patients discharged from public hospitals in Hong Kong. Patient experience with and staff response to the SMR were assessed at four hospitals before implementation at all public hospitals.

IntroductionHospitals commonly examine patient safety culture and other quality indicators to evaluate and improve performance in relation to quality and safety. A growing body of research has separately examined relationships between patient safety culture and patient experience on clinical outcomes and other quality indicators. However, there is a knowledge gap regarding the relationship between these two important domains. This article describes the protocol for a scoping review of published literature examining the relationship between patient safety culture and patient experience in hospital settings. The scoping review will provide an overview of research into the relationship between patient safety culture and patient experience in hospital contexts, map key concepts underpinning these domains and identify research gaps for further study.Methods and analysisThe scoping review will be conducted using the five stages of Arksey and O’Malley’s framework: identify the research question; identify relevant studies; study selection; chart data; and collate, summarise and report the results. The inclusion criteria will be applied using the Population, Concept and Context Framework. Searches will be conducted in the CINAHL, Cochrane Library, ProQuest, MEDLINE, PsycINFO, Scopus and SciELO databases, without applying date range limits. Hand-searching of grey literature will also be performed to find relevant, non-indexed literature. Data will be extracted using a standardised data extraction form developed by the Joanna Briggs Institute. Both descriptive and thematic analyses will be undertaken to scope key concepts within the body of reviewed literature.Ethics and disseminationThis type of study does not require an ethics review. The results will be submitted for publication in a peer-reviewed journal and presented at conferences.

ObjectiveIn the field of palliative care (PC) as it is integrated into heart failure (HF) treatment, it is essential to explore the patient experience and build on this knowledge for the further development of PC practice and policy. Based on an intervention study, this paper explores what patients with HF find significant in integrated sessions using a narrative S’ approach.DesignWe conducted a semistructured interview study with a qualitative analysis focused on meaning making. The study follows the guidelines of Consolidated Criteria for Reporting Qualitative Research.Participants and settingThe inclusion criteria for the PC intervention were (1) a new diagnosis of HF, (2) follow-up treatment at this local Danish HF clinic and (3) informed consent to participate in the integrated PC intervention. The only exclusion criterion was if the patient was already engaged in a PC programme. 20 patients agreed to participate in the intervention, and 12 of these completed the S’ approach sessions and participated in this interview study.ResultsOverall, the analysis showed that the integrated S’ approach sessions were successful in joining an embodied patient perspective with a medical perspective. The thematic analysis resulted in three themes supporting the overall findings: sessions bring comfort, telling your story provides a sense of meaningfulness, and integrating perspectives of HF into everyday life.ConclusionThe method using the S’ approach in integrated PC and HF sessions was significant in various ways. First, patients experienced a calm and safe atmosphere and perceived that the nurse was truly interested in them. Second, the integrated sessions based on the S’ approach were able to bring comfort to lived physical, psychosocial and existential issues. Last, it allowed patients to combine their embodied understanding of HF with a medical perspective, thereby finding meaning in the sense of how everything is connected.

ObjectivesThe 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.DesignRetrospective analysis of routinely collected data using decision tree modelling.SettingPrimary care: GP practices in England.Primary and secondary outcome measuresGPPS scores and GP practice CQC inspection ratings during 2018.ResultsMost 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.ConclusionsAlthough 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.

ObjectiveThe standard data-collection procedure in the Norwegian national patient experience survey programme is post-discharge mail surveys, which include a pen-and-paper questionnaire with the option to answer electronically. A purely electronic protocol has not previously been explored in Norway. The aim of this study was to compare response rates, background characteristics, data quality and main study results for a survey of patient experiences with general practitioners (GPs) administered by the standard mail data-collection procedure and a web-based approach.DesignCross-sectional survey.SettingGP offices in Norway.ParticipantsThe sample consisted of 6999 patients aged 16 years and older registered with a GP in November 2018.InterventionBased on a three-stage sampling design, 6999 patients of GPs aged 16 or older were randomised to one of two survey administration protocols: Group A, who were mailed an invitation with both a pen-and-paper including an electronic response option (n=4999) and Group B, who received an email invitation with electronic response option (n=2000).Main outcome measuresResponse rates, background characteristics, data quality and main study results.ResultsThe response rate was markedly higher for the mail survey (42.6%) than for the web-based survey (18.3%). A few of the background variables differed significantly between the two groups, but the data quality and patient-reported experiences were similar.ConclusionsWeb-based surveys are faster and less expensive than standard mail surveys, but their low response rates and coverage problems threaten their usefulness and legitimacy. Initiatives to increase response rates for web-based data collection and strategies for tailoring data collection to different groups should be key elements in future research.

BackgroundFrequent users of healthcare services are often categorised as ‘heavy-cost patients’. In the recent years, many jurisdictions have attempted to implement different public policies to optimise the use of health services by frequent users. However, throughout this process, little attention has been paid to their experience as patients.ObjectiveTo thematically synthesise qualitative studies that explore the experience of frequent users of primary care and emergency department services.DesignQualitative systematic review and thematic synthesis.SettingPrimary care and emergency department.ParticipantsFrequent users of primary care and emergency department services.MethodsA qualitative systematic review was conducted using three online databases (MEDLINE with full text, CINAHL with full text and PsycINFO). This search was combined to an extensive manual search of reference lists and related citations. A thematic synthesis was performed to develop descriptive themes and analytical constructs.Study selectionTwelve studies were included. All included studies met the following inclusion criteria: qualitative design; published in English; discussed frequent users’ experiences from their own perspectives and users’ experiences occurred in primary care and/or emergency departments.ResultsThe predominant aspects of frequent users’ experiences were: (1) the experience of being ill and (2) the healthcare experience. The experience of being ill encompassed four central themes: physical limitations, mental suffering, impact on relationships and the role of self-management. The healthcare experience embraced the experience of accessing healthcare and the global experience of receiving care.ConclusionThis synthesis sheds light on potential changes to healthcare delivery in order to improve frequent users’ experiences: individualised care plans or case management interventions to support self-management of symptoms and reduce psychological distress; and giving greater importance on the patient–providers relationship as a central facet of healthcare delivery. This synthesis also highlights future research directions that would benefit frequent users.

ObjectivesTo assess the experience of people with long-term respiratory conditions regarding the impact of measures to reduce risk of COVID-19.DesignAnalysis of data (n=9515) from the Asthma UK and British Lung Foundation partnership COVID-19 survey collected online between 1 and 8 April 2020.SettingCommunity.Participants9515 people with self-reported long-term respiratory conditions. 81% female, age ranges from ≤17 years to 80 years and above, from all nations of the UK. Long-term respiratory conditions reported included asthma (83%), chronic obstructive pulmonary disease (10%), bronchiectasis (4%), interstitial lung disease (2%) and ‘other’ (Outcome measuresStudy responses related to impacts on key elements of healthcare, as well as practical, psychological and social consequences related to the COVID-19 pandemic and social distancing measures.Results45% reported disruptions to care, including cancellations of appointments, investigations, pulmonary rehabilitation, treatment and monitoring. Other practical impacts such as difficulty accessing healthcare services for other issues and getting basic necessities such as food were also common. 36% did not use online prescriptions, and 54% had not accessed online inhaler technique videos. Psychosocial impacts including anxiety, loneliness and concerns about personal health and family were prevalent. 81% reported engaging in physical activity. Among the 11% who were smokers, 48% reported they were planning to quit smoking because of COVID-19.ConclusionsCOVID-19 and related social distancing measures are having profound impacts on people with chronic respiratory conditions. Urgent adaptation and signposting of services is required to mitigate the negative health consequences of the COVID-19 response for this group.

Objective To explore factors shaping the experiences of patients with relapsing-remitting multiple sclerosis with infusible disease-modifying drugs in a hospital setting.Design and settings The critical incident technique served as a framework for collecting and analysing patients’ qualitative account practices involving infusible disease-modifying drugs. Data were collected through semistructured interviews and one single-case study. Participants were recruited from all five regions in Denmark. Inductive thematic analysis was used to identify and interpret factors shaping patients’ infusion journey over time.Participants Twenty-two patients with relapsing-remitting multiple sclerosis receiving infusion with disease-modifying drugs (natalizumab, alemtuzumab and ocrelizumab).Results Four time scenarios—preinfusion, day of infusion, long-term infusion and switch of infusion—associated with the infusion of disease-modifying drugs were analysed to reveal how different factors could both positively and negatively affect patient experience. Time taken to make the treatment decision was affected by participants’ subjective perceptions of their disease activity; this may have set off a treatment dilemma in the event of a pressing need for treatment. Planning and routine made infusion practices manageable, but external and internal surroundings, including infusion room ambience and the quality of relationships with healthcare professionals and fellow patients, affected patients’ cognitive state and well-being irrespective of the infusion regimen. Switching the infusion regimen can reactivate worries akin to the preinfusion scenario.Conclusion This study provides novel insight into the positive and negative factors that shape patients’ experience of infusion care practices. From a patient’s perspective, an infusion practice is not a solitary event in time but includes planning and routine which become an integral part of their multiple sclerosis management. The quality of space and the ambience of the infusion room, combined with the relationship with healthcare professionals and fellow patients, can be a significant source of knowledge and support people with relapsing-remitting multiple sclerosis in their experience of agency in life. Objective To explore factors shaping the experiences of patients with relapsing-remitting multiple sclerosis with infusible disease-modifying drugs in a hospital setting. Design and settings The critical incident technique served as a framework for collecting and analysing patients' qualitative account practices involving infusible disease-modifying drugs. Data were collected through semistructured interviews and one single-case study. Participants were recruited from all five regions in Denmark. Inductive thematic analysis was used to identify and interpret factors shaping patients' infusion journey over time. Participants Twenty-two patients with relapsing-remitting multiple sclerosis receiving infusion with disease-modifying drugs (natalizumab, alemtuzumab and ocrelizumab). Results Four time scenarios-preinfusion, day of infusion, long-term infusion and switch of infusion-associated with the infusion of disease-modifying drugs were analysed to reveal how different factors could both positively and negatively affect patient experience. Time taken to make the treatment decision was affected by participants' subjective perceptions of their disease activity; this may have set off a treatment dilemma in the event of a pressing need for treatment. Planning and routine made infusion practices manageable, but external and internal surroundings, including infusion room ambience and the quality of relationships with healthcare professionals and fellow patients, affected patients' cognitive state and well-being irrespective of the infusion regimen. Switching the infusion regimen can reactivate worries akin to the preinfusion scenario. Conclusion This study provides novel insight into the positive and negative factors that shape patients' experience of infusion care practices. From a patient's perspective, an infusion practice is not a solitary event in time but includes planning and routine which become an integral part of their multiple sclerosis management. The quality of space and the ambience of the infusion room, combined with the relationship with healthcare professionals and fellow patients, can be a significant source of knowledge and support people with relapsing-remitting multiple sclerosis in their experience of agency in life.

Objective To estimate the economic burden to the health service of surgical site infection following caesarean section and to identify potential savings achievable through implementation of a surveillance programme.\ud Design Economic model to evaluate the costs and benefits of surveillance from community and hospital healthcare providers’ perspective.\ud Setting England.\ud Participants Women undergoing caesarean section in National Health Service\ud hospitals.\ud Main outcome measure Costs attributable to treatment and management of surgical site infection following caesarean section.\ud Results The costs (2010) for a hospital carrying out 800 caesarean sections a year based on infection risk of 9.6% were estimated at £18,914 (95% CI 11,521 to 29,499) with 28% accounted for by community care (£5,370). With inflation to 2019 prices, this equates to an estimated cost of £5.0m for all caesarean sections performed annually in England 2018-19, approximately £1,866 and £93 per infection managed in hospital and community respectively. The cost of surveillance for a hospital for one calendar quarter was estimated as £3,747 (2010 costs).\ud Modelling a decrease in risk of infection of 30, 20 or 10% between successive surveillance periods indicated that a variable intermittent surveillance strategy achieved higher or similar net savings than continuous surveillance. Breakeven was reached sooner with the variable surveillance strategy than continuous surveillance\ud when the baseline risk of infection was 10 or 15% and smaller loses with a baseline risk of 5%.\ud Conclusion Surveillance of surgical site infections after caesarean section with feedback of data to surgical teams offers a potentially effective means to reduce infection risk, improve patient experience and save money for the health service.\ud Strengths and limitations\ud • The model estimated both community (28%) and hospital costs (72%), providing a more representative estimate of overall economic burden to the health service.\ud • Time-matching of patients with and without infection according to length of post-operative stay provided a more accurate assessment of excess bed-days attributable to surgical site infection (2.6 days) than average excess length of stay (median difference 5 days) comparison by disentangling the impact of prolonged length of stay on increased chance of detecting an infection.\ud • Through capture and assessment of the costs and impact of surveillance, our model demonstrated the potential for savings through reductions in incidence of surgical site infections.\ud • Costs were obtained from NHS National Schedule Reference Costs and other sources rather than observed expenditure and assumptions made about the number of extra midwife and general practitioner appointments resulting from infection.\ud • The study was based on healthcare utilisation and did not assess direct and indirect costs borne by the patients or their carers.

ObjectivesWe aimed to evaluate test usage and patient and clinician experience following the introduction of point-of-care (POC) blood tests into a primary care out-of-hours service.DesignA mixed methods service evaluation comprising quantitative records of the clinical contexts of tests taken and qualitative interviews with clinicians. Research permissions and governance were obtained for patient interviews.SettingOut-of-hours primary care.ParticipantsAll patients requiring home visits from the service during the implementation period.InterventionsThe i-STAT POC blood test platform was introduced to two bases providing home visits for a period of 8 months. Venous blood samples were used and two cartridges were available. The CHEM8 cartridge measures sodium, potassium, chloride, total carbon dioxide (TCO2), anion gap, ionised calcium, glucose, urea, creatinine, haematocrit and haemoglobin. The CG4 cartridge measures lactate, pH, PaO2 and PCO2, TCO2, bicarbonate, base excess and oxygen saturation.Primary and secondary outcome measuresThe proportion of home visits where tests were taken, the clinical contexts of those tests, the extent to which clinicians felt the tests had influenced their decisions, time taken to perform the test and problems encountered. Clinician and patient experiences of using POC tests.Resultsi-STAT POC tests were infrequently used, with successful tests taken at just 47 contacts over 8 months of implementation. The patients interviewed felt that testing had been beneficial for their care. Clinician interviews suggested barriers to POC tests, including practical challenges, concerns about time, doubt over whether they would improve clinical decision making and concern about increased medicolegal risk. Suggestions for improving adoption included sharing learning, adopting a whole team approach and developing protocols for usage.ConclusionsPOC tests were not successfully adopted by an out-of-hours home visiting service in Oxfordshire. While some clinicians felt they could not add value, in other cases they resulted in improved patient experience. Adoption could be promoted by improving technical, team and education factors.

Objective To determine the role of patient demographics, care domains and self-perceived health status in the analysis and interpretation of results from the Canadian Patient Experience Survey–Inpatient Care. Design Cross-sectional survey. Setting Single large Canadian two campus tertiary care academic centre. Participants Random sampling of hospital patients postdischarge. Intervention and main outcome measures Logistic regression models were developed to analyse topbox scoring on four questions of global care (rate experience, recommend hospital, rate hospital, overall helped). Means of each composite domain were correlated to the four overall scores at the patient level to determine Spearman’s rank correlation coefficients which were plotted against the overall (hospital) domain score for the key driver analysis. Results Topbox scoring was decreased with worse degrees of perceived physical and mental health in all four global questions (p

ObjectiveTo determine the role of patient demographics, care domains and self-perceived health status in the analysis and interpretation of results from the Canadian Patient Experience Survey–Inpatient Care.DesignCross-sectional survey.SettingSingle large Canadian two campus tertiary care academic centre.ParticipantsRandom sampling of hospital patients postdischarge.Intervention and main outcome measuresLogistic regression models were developed to analyse topbox scoring on four questions of global care (rate experience, recommend hospital, rate hospital, overall helped). Means of each composite domain were correlated to the four overall scores at the patient level to determine Spearman’s rank correlation coefficients which were plotted against the overall (hospital) domain score for the key driver analysis.ResultsTopbox scoring was decreased with worse degrees of perceived physical and mental health in all four global questions (pConclusionsGlobal measures of overall care are influenced by patient-perceived physical and mental health. Caution should be exercised in using patient-satisfaction surveys to compare performance between different healthcare provision entities, as apparent differences could be explained by variation in patient mix rather than variation in performance.

ObjectivesThe rate of admissions for ambulatory care sensitive conditions (ACSCs) is a key outcome indicator for primary care, and patient experience (PX) is a crucial process indicator. Studies have reported higher rates of admission for ACSCs in rural areas than in urban areas. Whether there is an association between admissions for ACSCs and PX in rural areas has not been examined. This study aimed to document admissions for ACSCs on Japanese rural islands, and assess whether there was an association between the rate of admissions for ACSCs and PX.DesignMulticentred, prospective, cohort studySettingThis study was conducted on five rural islands in Okinawa, Japan.ParticipantsThe study participants were all island inhabitants aged 65 years or older.Primary outcome measuresThis study examined the association between ACSCs and PX assessed by a questionnaire, the Japanese Version of Primary Care Assessment Tool. ACSCs were classified using the International Classification of Diseases, Tenth Revision, and the rate of admissions for ACSCs in 1 year.ResultsOf 1258 residents, 740 completed the questionnaire. This study documented 38 admissions for ACSCs (29 patients, males/females: 15/14, median age 81.9) that included congestive heart failure (11), pneumonia (7) and influenza (5). After adjusting for covariates and geographical clustering, admissions for ACSCs had a significant positive association with each patient’s PX scores (OR per 1 SD increase=1.62, 95% CI 1.02–2.61).ConclusionsPhysicians serving rural areas need to stress the importance of preventive interventions for heart failure, pneumonia and influenza to reduce the number of admissions for ACSCs. Contrary to previous studies, our findings might be explained by close patient–doctor relationships on the rural islands.

ObjectiveTo assess the representativeness of National Cancer Patient Experience Survey (CPES) responders compared with the English cancer registry population in term of age, sex, socioeconomic deprivation, ethnicity, disease stage and median survival.DesignPopulation-based case-control study.SettingEngland.PopulationWe identified 103 186 colorectal, lung, breast and prostate cancer patients responding to at least one survey during 2010–2014 and randomly selected one non-responder from the cancer registry matched on cancer type and yearly quarter of diagnosis.Main outcome measureWe compared age, sex, socioeconomic deprivation, ethnicity and disease stage between the two groups using logistic regression. We also compared survival (in years) using the Mann-Whitney test.ResultsAcross all cancer types survey responders were younger, more likely to have a White ethnic background, to be resident in less deprived areas and diagnosed with earlier stage disease although they varied between cancers. Median survival for responders was also higher than for the cancer registry population (colorectal: 4.8 vs 3.2; lung: 2.0 vs 0.3; breast: 5.7 vs 5.4; and prostate: 5.7 vs 5.2 years; all p-valuesConclusionCPES responders with the four most common cancers do not necessarily represent all patients with these cancers in terms of demographic characteristics and tumour stage at diagnosis. These limitations should be considered when interpreting findings. To capture the experiences of patients currently underrepresented in CPES, different approaches may need to be taken.