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Abstract Introduction Foot pain can be a significant burden for patients. Custom foot orthoses (CFOs) have been a mainstay in podiatry treatment for foot pain management and improving foot function. However, little is known about podiatrists' experience of prescribing CFOs or patient experience of using foot orthoses (FOs), including CFOs, for foot pain. Methods A focus group (FG) discussion with three FOs users (Female = 2 and Male = 1) was conducted in November 2022 within a private podiatry practice. This group represented non‐experts from the general local population of individuals with existing or previous foot pain who have personally experienced using either over‐the‐counter FOs or CFOs. An online FG discussion with five musculoskeletal (MSK) specialist podiatrists (Female = 2 and Male = 3) was also conducted in December 2022. This group represented podiatrists with specialist knowledge in foot biomechanics and clinical experience in CFO provision. The FG discussions were recorded and lasted 49 and 57 min respectively. Transcribed data was manually coded, and a thematic analysis was undertaken to identify patterns within the collected data. Results The participants in the patient FG detailed mixed experiences of the prescription process and CFOs received, with reports of limited involvement/input in their prescription, the need for frequent adjustments and high costs. The impact on footwear choices, replicability and transferability of CFOs into different types of shoes and technologies to aid design were also highlighted. In the podiatrist FG, lack of confidence in design and manufacture processes, prescription form language, relationship and communication building with manufacturers, variability in the CFOs issued and the need for better student education in CFO provision emerged as key themes. Conclusion Patients and podiatrists shared similar views on CFO provision, namely poor communication with manufacturers leading to dissatisfaction with the CFOs prescribed causing negative impacts on patient experiences. Podiatrists called for greater education at registration level to increase new graduate podiatrist knowledge in CFO design and manufacture and better collaboration with manufacturing companies.

Abstract Introduction Bladder cancer is one of the most common cancers worldwide and can be managed with a range of approaches, including conservative, medical and surgical therapies. Treatment may be associated with considerable morbidity, but despite this, little data exist to reflect patients' subsequent experience. This study aims to evaluate patients' experiences of bladder cancer care by linking data from a national cancer experience survey with data routinely collected from National Health Service (NHS) sources. This study considers patient perspectives and makes recommendations to improve the patient experience of bladder cancer care. Methods Anonymised data from the National Cancer Patient Experience Survey (NCPES) for patients who had received care for bladder cancer were collated and linked with demographic and treatment data. Questions from the NCPES were then categorised into different themes based on their content. This study focused on themes relating to lifestyle, activities of daily living (ADL), symptoms, psychological impact and body perception. Statistical analyses were used to investigate the relationship between patient reported experience, demographics and type of care received. Results NCPES data from 673 patients (487 male, 29 undisclosed) with at least T1 bladder cancer were analysed. Statistically significant differences were identified across the five investigated patient experience themes. No significant difference was seen in patient reported experience between bladder cancer drug treatments (such as intravesical BCG vs. intravesical chemotherapy vs. systemic chemotherapy) and radiotherapy types (curative vs. palliative). Patients treated with cystectomy had significantly worse experiences relating to body image and ADL but not when compared with patients treated with radical radiotherapy. Patients with long‐term health conditions reported worse experiences for all five themes compared with those without. Conclusion The literature surrounding the experience of patients with bladder cancer is limited. This data linkage study demonstrates the impact of bladder cancer care on five patient experience themes, including the effect of different treatment types and the presence of long‐term health conditions. While limited by sample size and data comprehensiveness, this study aims to inform clinicians and service providers of factors affecting patient experience of bladder cancer care, to stimulate service review and development.

Abstract Background It is anticipated that by 2030, 20% of the world's population will live with obesity. Success in the management of obesity is predominately determined in terms of BMI or percentage weight loss, yet the limitations of these have been widely recognized. This study aimed to understand patient definitions of success in obesity treatment. Methods A series of in‐depth focus groups, carried out with n = 30 adults living with obesity, offered a qualitative insight into patient definitions of success. Results A thematic analysis of data yielded four thematic findings: Success as freedom from stigma, bias and the mental burden of obesity; success as being able to participate fully in the world; success as measured by NSVs [non‐scale victories]; and success is not a number on a scale. Conclusions What this study highlights is (1) how current measures of success do not accurately encompass the priorities of people living with obesity, (2) the importance of addressing the psychological and emotional aspects of living with obesity in any definition of success , and (3) the importance of meaningful co‐creation of goals and indicators of success between clinician and patient for the effective management of the disease of obesity.

ABSTRACT Introduction There have been some concerns about the impact of temporary doctors, otherwise known as locums, on patient safety and the quality of care. Despite these concerns, research has paid little attention to the implications of locum working on patient experience. Methods A qualitative semi‐structured interview study was conducted with 130 participants including locums, people working with locums and patients with experience of being seen or treated by locums. Analysis was conducted using a reflexive thematic approach and abductive analysis to position themes against wider knowledge. Results Three main themes were constructed through analysis: (1) Awareness and disclosure; patients were not always aware if their doctor was a locum, and there was some debate about whether patients had a right to know, particularly if locum working presented quality and safety risks. (2) Continuity and accessibility of care; access was regarded as priority for acute conditions, but for long‐term or serious conditions, patients preferred to see a permanent doctor who knew their history, although it was acknowledged that locums could provide fresh perspectives. (3) Communication and practice; locums and patients described how consultations were approached differently when doctors worked as locums. Patients evaluated their interactions based on how safe they felt with practitioners. Conclusion Patients reported that they were unlikely to have continuity of care with any doctors delivering care, regardless of their contractual status. Locums sometimes provided new perspectives on care which could be beneficial for patient outcomes, but for patients with long‐term, complex or serious conditions continuity of care was important, and these patients may avoid or delay seeking care when locums are the only available option. Patient or Public Contribution Patients and carers were involved in our study from inception to dissemination. Our Patient and Public Involvement (PPI) forum was involved throughout project design and planning and gave us feedback and guidance on research materials and outputs (e.g., study protocol, participant information sheets, survey tools, interview schedules, emerging findings). Our PPI forum co‐produced our patient interview schedule, two members of our PPI forum led the patient focus groups and all were involved in analysis of patient interviews. Our PPI Chair was involved in the preparation of this manuscript.

Abstract Introduction Patient‐reported measures that assess satisfaction and experience are increasingly utilised in healthcare sectors, including the alcohol and other drug (AOD) sector. This scoping review identifies how and to what extent people accessing AOD services have been involved in the development of satisfaction and experience measures to date. Methods PubMed, EMBASE, CINAHL, Scopus, ProQuest, Google and Google Scholar were searched. Included papers described the development and/or implementation of a multiple‐item measure of patient‐reported experience or satisfaction specifically for people accessing AOD treatment and/or harm reduction programmes. If there was more than one paper, key papers were chosen that described each measure. The method of development, including service user involvement, was assessed against a framework generated for this review. Two reviewers were involved at each stage. Results Thirty measures—23 satisfaction and 7 experience—were identified. Sixteen measures reported some level of involvement by people accessing AOD services in their development, although, for most measures, at a relatively low level. This involvement increased over the time span of the review becoming more frequent in later years. Only four measures were developed for use in harm reduction‐specific settings, and fewer than half reported undertaking analysis of underlying scale structure and constructs. Conclusion Several gaps could be addressed to enhance the measurement of patient‐centred care in the AOD sector, including: developing experience measures for use in harm reduction settings and across various AOD settings in a service system; improved reporting of psychometric properties of these measures and increasing commitment to the meaningful involvement of AOD service users in measure development. Patient or Public Contribution This scoping review is part of a broader codesign project that involves a partnership between the peak organisation for AOD services and the peer‐based AOD consumer organisation in the Australian Capital Territory, Australia. These organisations are working closely together to engage with AOD service users, service providers and policy makers in this codesign project. As such, the Executive Director of the peer‐based AOD consumer organisation is involved as a co‐author of this scoping review.

Abstract Introduction Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this ‘point of access’ barrier. Methods We conducted semi‐structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board. Results We interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so. Conclusion Legal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria. Patient or Public Contribution Families and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants.

Abstract Context Patient experience is an important component of high‐quality care and is linked to improved clinical outcomes across a range of different conditions. Patient‐reported experience measures (PREMs) are psychometrically validated instruments designed to identify where strengths and vulnerabilities in care exist. Currently, there is no validated instrument available to measure patient experience among people aged over 65 years attending the emergency department (ED). Objective This paper aims to describe the process of generating, refining and prioritising candidate items for inclusion in a new PREM measuring older adults' experiences in ED (PREM‐ED 65). Design One hundred and thirty‐six draft items were generated via a systematic review, interviews with patients and focus groups with ED staff exploring older adults' experiences in the ED. A 1‐day multiple stakeholder workshop was then convened to refine and prioritise these items. The workshop entailed a modified nominal groups technique exercise comprised of three discrete parts—(i) item familiarisation and comprehension assessment, (ii) initial voting and (iii) final adjudication. Setting and Participants Twenty‐nine participants attended the stakeholder workshop, conducted in a nonhealthcare setting (Buckfast Abbey). The average age of participants was 65.6 years. Self‐reported prior experiences of emergency care among the participants included attending the ED as a patient (n = 16, 55.2%); accompanying person (n = 11, 37.9%) and/or as a healthcare provider (n = 7, 24.1%). Results Participants were allocated time to familiarise themselves with the draft items, suggest any improvements to the item structure or content, and suggest new items. Two additional items were proposed by participants, yielding a total of 138 items for prioritisation. Initial prioritisation deemed most items ‘critically important’ (priority 7–9 out of 9, n = 104, 75.4%). Of these, 70 items demonstrated suitable inter‐rater agreement (mean average deviation from the median

Abstract Aim To explore and gain knowledge of the experiences and needs among patients with amyotrophic lateral sclerosis (ALS) of their decision‐making processes whether to choose invasive home mechanical ventilation or not. Design A qualitative study. Methods A phenomenological‐hermeneutic approach influenced by Ricoeur's interpretation theory was used. Seven patients with ALS were interviewed. The Consolidated Criteria for Reporting Qualitative Research checklist was used for reporting. Results Three themes were evident in patients' accounts of the decision‐making process: (1) being taken care of directly after receiving the diagnosis, (2) living in uncertainty about what the future would bring and (3) doubt causing patients with ALS to change their minds. Patients with ALS were burdened with everyday life challenging decision‐making processes about future treatment and doubt caused patients to change their minds about their future treatment. It is necessary to support patients in their decision‐making processes using shared decision‐making. Patient or Public Contribution No Patient or Public Contribution.

Abstract Aim The main aim of the present study is to examine the expectations and feelings of people awaiting lung transplantation. Background The assessment of the benefits of lung transplant should consider, among other things, the subjective perceptions of patients about the procedure, especially in relation to the context and to their values, goals and expectations. This is an issue that has not been studied in depth, especially in Spain. Design Exploratory qualitative study. Methods Data were collected through semi‐structured interviews during the period of being on the waiting list for transplantation. Thematic analysis of the data was supported by the Atlas.ti software. Results The study population comprised 16 patients awaiting lung transplant, a number sufficient to reach data saturation. Four categories were identified to describe patients' feelings and expectations: (1) reasons for undergoing the transplant, (2) expectations about life post‐transplant, (3) emotional state, and (4) relationship with the healthcare team. Conclusions Patients have high expectations of lung transplantation. They see it as offering them a second chance at life, although the future creates uncertainty. The healthcare professionals are identified as key actors, providing essential support and information throughout the various stages of the process. Future research should explore recipients' experiences of lung transplant at later stages. Relevance to clinical practice It is important to adapt care through all the lung transplant process, which is accompanied by intense and complex emotions since the beginning. Thus, providing social and psychological support from the beginning may contribute to their health status, helping them deal with all the emotions and feelings experienced, and find balance between expectations and reality. Patient or public contribution Sixteen patients awaiting lung transplant were interviewed. Interview transcripts were returned to participants to check for accuracy with their experiences.

Abstract Background Indiscriminate use of laboratory blood testing in hospitals contributes to patient discomfort and healthcare waste. Patient engagement in low‐value healthcare can help reduce overuse. Understanding patient experience is necessary to identify opportunities to improve patient engagement with in‐hospital laboratory testing. Objectives To understand patient experience with the process of in‐hospital laboratory blood testing. Methods We used a qualitative study design via semistructured interviews conducted online or over the phone. Participants were adult patients or family members/caregivers (≥18 years of age) with a recent (within 12 months of interview) experience of hospitalization in Alberta or British Columbia, Canada. We identified participants through convenience sampling and conducted interviews between May 2021 and June 2022. We analysed transcripts using thematic content analysis. Recruitment was continued until code saturation was reached. Results We interviewed 16 participants (13 patients, 1 family member and 2 caregivers). We identified four themes from patients' experiences of in‐hospital laboratory blood testing: (i) patients need information from healthcare teams about expected blood testing processes, (ii) blood draw processes should consider patient comfort and preferences, (iii) patients want information from their healthcare teams about the rationale and frequency of blood testing and (iv) patients need information on how their testing results affect their medical care. Conclusion Current laboratory testing processes in hospitals do not facilitate shared decision‐making and patient engagement. Patient engagement with laboratory testing in hospitals requires an empathetic healthcare team that provides clear communication regarding testing procedures, rationale and results, while considering patient preferences and offering opportunities for involvement. Patient or Public Contribution We interviewed 16 patients and/or family members/caregivers regarding their in‐hospital laboratory blood testing experiences. Our findings show correlations between patient needs and patient recommendations to make testing processes more patient‐centred. To bring a lived‐experience lens to this study, we formed a Patient Advisory Council with 9–11 patient research partners. Our patient research partners informed the research design, co‐developed participant recruitment strategies, co‐conducted data collection and informed the data analysis. Some of our patient research partners are co‐authors of this manuscript.

Abstract Introduction Long COVID (LC) is a multisystem illness, with fluctuating symptoms that affect the daily activities of patients. There are still no standardised diagnostic criteria or treatment approaches for managing LC. The LC‐Optimal Health Programme (LC‐OHP) was designed to support the mental wellbeing and physical health of people with LC. Gaining an in‐depth understanding of patients' experiences and support strategies is imperative to identifying appropriate supports to guide them through their recovery. This study aimed to elicit the experiences and perceptions of adults with LC regarding symptoms, support strategies and the LC‐OHP. Methods As part of a wider randomised controlled trial of the LC‐OHP, participants in the intervention group had their sessions audio‐recorded. Transcripts were thematically analysed to identify common emergent themes. Findings The LC‐OHP was delivered to 26 participants. Data were collected between January 2022 and February 2023. Four main themes emerged: ‘Symptoms and impact of LC’; ‘Other sources of support and perceived challenges’; ‘Strategies to support LC’ and ‘Perceptions of the LC‐OHP’. Conclusion LC experiences were mostly described as fluctuating and burdensome that significantly impacted daily activities, and physical and mental health. The LC‐OHP was perceived as beneficial. Access and experiences of other sources of support were varied. Increasing LC awareness amongst health practitioners and the wider community has the potential to improve the experiences of those affected by LC. Patient or Public Contribution The LC‐OHP was derived from the OHP. It was adapted to people with LC following consultation with practitioners at an LC clinic. Additionally, the mode and timing of delivering the programme to this population were taken into account for its delivery at the convenience of participating patients. While considering that fatigue and brain fog are amongst the most reported complaints of people with LC, public members with LC were not involved directly in this study; however, feedback obtained from practitioners working with this population was implemented in amending the programme and its delivery. Additionally, feedback from patients with other chronic health conditions who used the OHP in previous studies has been implemented to make the programme more user‐friendly. Moreover, feedback obtained from participants receiving this programme in this study was implanted immediately and shared with other participants. Finally, this study was overviewed by a data management committee that included two public members with LC, who contributed and provided guidance to support this study.

Abstract Background Poor quality sleep in hospitals may be problematic for patients, negatively impacting their recovery and wellbeing. This project aimed to investigate the effectiveness of codesign in addressing key issues affecting sleep disruption in the healthcare setting. Methods Codesign with patients, staff and consumer representatives was conducted in an acute metropolitan tertiary public hospital in Sydney, Australia. Through a four‐stage process, a multimodal intervention to address and reduce the impact of sleep disruptions among hospital inpatients was created. Pre‐ and post‐intervention evaluation was used to determine changes in patient‐reported sleep disruption. Results ‘The HUSH Project’ (Help Us Support Healing) intervention resulted from the codesign process, which included the provision of HUSH Sleep Packs (with earplugs, eye masks and herbal tea), patient information resources, and ward‐based Sleep Champions. Survey data from 210 patients revealed a statistically significant decrease in patient‐reported noise disturbances for patients in shared rooms following the 4‐week intervention period of the HUSH program. Conclusion The HUSH Project demonstrated that a novel multimodal intervention may be valuable in reducing sleep disruption in hospitals. These findings also indicate the benefits of using codesign methodology to support improvement projects that seek to enhance patient experiences of care. Patient or Public Contribution This project utilised codesign methodology, which involved significant contributions from patients and consumer representatives, from research conceptualisation into intervention design, implementation and project evaluation.

Abstract Objectives This study aimed to develop and validate a tailored patient‐reported outcome measure (PROM) evaluating the patient experience of recurrent urinary tract infection (rUTI) symptom severity. This measure was designed to supplement clinical testing methods, allowing full assessment of the patient experience of rUTI symptom burden, while enhancing patient‐centred UTI management and monitoring. Subjects and Methods The Recurrent Urinary Tract Infection Symptom Scale (RUTISS) was developed and validated using a three‐stage methodology, in accordance with gold‐standard recommendations. Firstly, a two‐round Delphi study was conducted to gain insights from 15 international expert clinicians working in rUTI, developing an initial pool of novel questionnaire items, assessing content validity and making item refinements. Next, two phases of one‐to‐one semi‐structured cognitive interviews were conducted with a diverse sample of 28 people experiencing rUTI to assess questionnaire comprehensiveness and comprehensibility, making refinements after each phase. Finally, a comprehensive pilot of the RUTISS was conducted with 240 people experiencing rUTI across 24 countries, providing data for psychometric testing and item reduction. Results Exploratory factor analysis indicated a four‐factor structure comprising: ‘urinary pain and discomfort’, ‘urinary urgency’, ‘bodily sensations’ and ‘urinary presentation’, together accounting for 75.4% of the total variance in data. Qualitative feedback from expert clinicians and patients indicated strong content validity for items, which was supported by high content validity indices in the Delphi study (I‐CVI > 0.75). Internal consistency and test–retest reliability of the RUTISS subscales were excellent (Cronbach's α = 0.87–0.94 and ICC = 0.73–0.82, respectively), and construct validity was strong (Spearman's ρ = 0.60–0.82). Conclusion The RUTISS is a 28‐item questionnaire with excellent reliability and validity, which dynamically assesses patient‐reported rUTI symptoms and pain. This new PROM offers a unique opportunity to critically inform and strategically enhance the quality of rUTI management, patient‐clinician interactions, and shared‐decision making by monitoring key patient‐reported outcomes.

Abstract Background Involving patients is a key premise of national and international policies on patient safety, which requires understanding how patients or carers want to be involved and developing resources to support this. This paper examines patients' and carers' views of being involved in patient safety in primary care and their views of potentially using a co‐designed patient safety guide for primary care (PSG‐PC) to foster both involvement and their safety. Methods A qualitative study using semistructured face‐to‐face interviews with 18 patients and/or carers in primary care. Interviews were transcribed and analysis was conducted using an inductive thematic approach. Results Overall participants expressed enthusiasm for the PSG‐PC as a tool to support patients and carers to be involved in patient safety in primary care. However, for some participants being involved in patient safety was seen as taking on the role of General Practitioner and had the potential to add an additional workload for patients. Participants' willingness or ability to be involved in patient safety was influenced by a range of factors including an invisible, often underacknowledged role of everyday safety for patients' interactions with primary care; the levels of involvement that patients wanted in their care and safety and the work of embedding the PSG‐PC for patients into their routine interactions with primary care. Participants identified components of the PSG‐PC that would be useful to them, in particular, if they had a responsibility for caring for a family member if they had more complex care or long‐term conditions. Conclusion Involving patients and carers in patient safety needs a tailored and personalized approach that enables patients and carers to use resources like the PSG‐PC routinely and helps challenge assumptions about their willingness and ability to be involved in patient safety. Doing so would raise awareness of opportunities to be involved in safety in line with personal preference. Patient or Public Contribution Patient and public involvement were central to the research study. This included working in partnership to develop the PSG‐PC with patients and carers and throughout our study including in the design of the study, recruiting participants, interpretation of findings.

Abstract Aim This study aimed to clarify the treatment experience of patients undergoing negative pressure wound therapy (NPWT). Design This study used a qualitative design. Methods Seventeen inpatients were semi‐structured interviewed about their experiences of treatment with negative pressure wound therapy. Results Inpatients' answers were categorized into seven themes: pain and discomfort associated with treatment, physical limitations owing to attached device, mental burden owing to the odour and noises of the attached device, social limitations owing to the attached device, advances in medical care and science, device personification and mixed feelings towards medical staff. The patients were able to tolerate the aforementioned limitations while feeling attachment and gratitude towards the device created through advances in medical care and science, and towards medical staff who helped them heal. In the future, we plan to develop an NPWT care guide.

Background Patients experience atrial fibrillation (AF) as a complex disease given its adversity, chronicity, and necessity for long‐term treatments. Few studies have examined the experience of rural individuals with AF. We conducted qualitative assessments of patients with AF residing in rural, western Pennsylvania to identify barriers and facilitators to care. Methods and Results We conducted 8 semistructured virtual focus groups with 42 individuals living in rural western Pennsylvania using contextually tailored questions to assess participant perspectives. We inductively analyzed focus group transcripts using paragraph‐by‐paragraph and focused coding to identify themes with the qualitative description approach. We used Krippendorff α scoring to determine interreviewer reliability. We harnessed investigator triangulation to augment the reliability of our findings. We reached thematic saturation after coding 8 focus groups. Participants were 52.4% women, with a median age of 70.9 years (range, 54.5–82.0 years), and most were White race (92.9%). Participants identified medication costliness, invisibility of AF to others, and lack of emergent transportation as barriers to care. Participants described interpersonal support and use of technology as important for AF self‐care, and expressed ambivalence about how relationships with health care providers affected AF care. Conclusions Focus group participants described multiple social and structural barriers to care for AF. Our findings highlight the complexity of the experience of individuals with AF residing in rural western Pennsylvania. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT 04076020.

Abstract Background Critical care bed capacity per capita in Ireland is among the lowest in Europe. The COVID‐19 pandemic has put additional strain on an over‐stretched healthcare system. COVID‐19 community assessment hubs (CAHs) were established to prevent unnecessary admission to acute hospitals and to reduce infection spread. Objective The aim of this study was to assess the effectiveness and acceptability of CAHs and identify how the service might be improved or adapted for possible future use. Design This was a mixed methods study, incorporating co‐design with clinical stakeholders. Data collection was via an online survey and semistructured telephone interviews with staff and patients conducted between January and May 2021. Setting and participants Thirty‐one patients completed the survey and nine were interviewed. Twenty interviews were conducted with staff. Results The findings suggest that the CAH model was successful in providing a dedicated pathway for assessing patients with COVID‐19 symptoms, whilst mitigating the risk of infection. Patients were particularly positive about the timely, comprehensive and holistic care they received, as well as the accessibility of the clinics and the friendly attitudes of the staff. Staff welcomed the training and clinical protocols which contributed to their feelings of safety and competency in delivering care to this cohort of patients. They also highlighted the benefits of working in a multidisciplinary environment. Both staff and patients felt that the hubs could be repurposed for alternative use, including the treatment of chronic diseases. Discussion This study describes staff and patients' experiences of these hubs. An unexpected outcome of this study is its demonstration of the true value of effective multidisciplinary working, not only for the staff who were deployed to this service but also for the patients in receipt of care in these hubs. Conclusion This multidisciplinary patient‐centred service may provide a useful model for the delivery of other services currently delivered in hospital settings. Patient or Public Contribution An earlier phase of this study involved interviews with COVID‐19‐positive patients on a remote monitoring programme. The data informed this phase. Several of the authors had worked in the CAHs and provided valuable input into the design of the staff and patient interviews.

Abstract Introduction Our aim is to explore the ways in which a patient and a general practitioner (GP) negotiate knowledge claims stemming from different epistemic domains while dealing with a mismatch between experiential and biomedical knowledge during the clinical consultation. We interpret their interaction in relation to the sociocultural context in which their negotiation is embedded and identify factors facilitating their successful negotiation (a medical error is avoided). Methods Based on a narrative analysis of a verbatim transcript of a complete naturally occurring primary care consultation, we explore the moment‐to‐moment unfolding of talk between the patient and the GP (two women). Findings The patient experiences symptoms of what she interprets as a thyroid condition, and indirectly asks for medication. She presents her case by drawing on experiential knowledge (‘it feels like my metabolism has shut down’) and biomedical knowledge (while suggesting a diagnosis and a diagnostic test). The GP informs her that her thyroid blood tests are normal and uses biomedical knowledge to explain why she turns down the patient's request. This stages a potential conflict between the patient's embodied experiential knowledge and the doctor's biomedical knowledge. However, during their encounter, the patient and the GP manage to co‐construct the patient's illness story and make shared decisions about further actions. Conclusion The transition from potential conflict to consensus is a result of the mutual efforts of two parties: a patient who persistently claims experiential as well as biomedical knowledge while at the same time deferring to the GP's professional knowledge, and a GP who maintains her epistemic authority while also acknowledging the patient's experiential and biomedical knowledge. Patient and Public Contribution Our empirical data are sourced from a data archive and patients were not involved in the design or conduct of the study, but our study is based on a naturally occurring clinical consultation with a patient.

Abstract Introduction Patient‐centred care (PCC) has come to the forefront for many institutions, funding agencies and clinicians, and is integrated into care. Does a disconnect in understanding still exist between patients, healthcare organizations and clinicians in what PCC means and how outstanding issues might be addressed? Methods We conducted interviews and focus groups with self‐reported chronic care patients and clinicians providing care to these patients exploring PCC experiences, expectations and practices. These data were initially analysed using inductive thematic analysis. This paper reports on the findings of a secondary analysis examining the alignment between patients and clinicians on five key predetermined dimensions of PCC. Results Eighteen patients participated, representing a range of chronic conditions. Thirty‐eight clinicians participated. One thousand and three hundred patient and 1800 clinician codes were identified and grouped into 5 main topics with 140 unique themes (patients) and 9 main topics with 54 unique themes (clinicians). A total of 166 quotes (patient = 93, clinician = 73) were identified for this PCC definition alignment analysis. Partial or complete alignment of patient and clinician perspectives was seen on most dimensions. Key disconnects were observed in patient involvement, patient empowerment and clinician–patient communication. Only 18% of patients reported experiencing patient‐centred communication, whereas 57% of clinicians reported using patient‐focused communication approaches. Conclusion Overall, study patients and clinicians endorse that many PCC elements occur. This study highlights key differences between patients and clinicians, suggesting persistent challenges. Clinician participants relayed their PCC approaches of informing and educating patients; however, patients often perceive these approaches as didactic, role‐diminishing and noncollaborative. Collaborative approaches, such as shared decision‐making, hold promise to bridge persistent PCC gaps and should be integrated into medical education programmes. Patient or Public Contribution This project was conceived and executed with a co‐design approach wherein patients with chronic conditions who are trained in research (i.e., see descriptions of Patient and Community Engagement Research in the text) were involved in all stages of the research project alongside other researchers on the project team. Healthcare providers were involved as participants and as principal investigators in the project.

Abstract Background Patient‐Reported Experience Measures (PREMs) are key in improving healthcare quality, but no PREM exists for inflammatory bowel disease (IBD). This study aimed to co‐produce a PREM with IBD service users for IBD service evaluation and quality improvement programme. Methods A pool of 75 items was drawn from published survey instruments covering interactions with services and aspects of living with IBD. In Stage 1, during two workshops, eight expert service users reduced candidate items through a ranked‐choice voting exercise and suggested further items. During Stage 2, 18 previously uninvolved people with IBD assessed the face and content validity of the candidate items in ‘Think Aloud’ interviews. During two final workshops (Stage 3), the expert service users removed, modified and added items based on the interview findings to produce a final version of the PREM. Results Stage 1 generated a draft working PREM mapped to the following four domains: Patient‐Centred Care; Quality; Accessibility; Communication and Involvement. The PREM included a set of nine items created by the expert group which shifted the emphasis from ‘self‐management’ to ‘living with IBD’. Stage 2 interviews showed that comprehension of the PREM was very good, although there were concerns about the wording, IBD‐relevance and ambiguity of some items. During the final two workshops in Stage 3, the expert service users removed 7 items, modified 15 items and added seven new ones based on the interview findings, resulting in a 38‐item PREM. Conclusions This study demonstrates how extensive service user involvement can inform PREM development. Patient or Public Contribution Patients were involved as active members of the research team and as research participants to co‐produce and validate a PREM for IBD services. In Stage 1, eight expert service users (‘the expert group’) reduced candidate items for the PREM through a voting exercise and suggested new items. During Stage 2, 18 previously uninvolved people with IBD (the ‘think aloud’ participants) assessed the validity of the candidate items in ‘Think Aloud’ interviews as research participants. In Stage 3, the expert group removed, changed and added items based on the interview findings to produce a final version of the 38‐item PREM. This study shows how service user involvement can meaningfully inform PREM development.

Abstract Background In recent years, attempts have been made to incorporate patients' experiences into healthcare processes, to complement clinical indicators, with what are known as patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs). While the research into PROMs is more developed, the application of PREMs faces some difficulties. The incorporation of emotional indicators into assessments of the experience is an area that remains to be explored. Objectives This study proposes a new technique to analyse the emotions experienced by patients during the care process, examines how these emotions influence their satisfaction and propose that if healthcare services focus more on patients' emotions, they can improve the effectiveness of the sector. Methods The first, qualitative stage, gathered data from patients to design a patient journey (PJ). The PJ was then reproduced as a video. In a subsequent, quantitative stage, the video was shown to experimental participants, and their emotions were measured through facial expression analysis and a questionnaire. Results A new technique to gather emotional data showed that the emotions patients experience do not affect their satisfaction with their clinical care or the physical aspects of the process. However, their emotions did affect their satisfaction with people and organizations. Conclusions The importance of the emotional component of patients' experiences was underlined. Therefore, healthcare organizations should take account of this dimension, as well as the cognitive, to increase patient satisfaction and improve their care processes. Understanding the impact of the emotions identified at the subconscious level can help improve the patient experience. A new methodology was applied that may help health professionals to collect emotional data about patients' experiences and to develop PREMs. Patient/Public Contribution Patients were involved in all stages of this research. In the exploratory phase, some helped define the touchpoints of the PJ. The data from the subsequent experimental phase were collected from another group, and the emotions they experienced were identified through the analysis of their facial expressions. Based on the results of this study, a working group including patients has been established to work on improvements in the PJ.

Abstract Introduction This article analyzes experiences of antibiotic use and bacterial infections among Primary Health Care users of the Brazilian Unified Health System (SUS) and the possible implications for antimicrobial resistance (AMR). The aim is to map aspects that shape users' lay knowledge regarding antibiotics use and AMR. Methods This is an exploratory study, which consists primarily of individual in‐depth interviews with 19 respondents. Recurrent interview topics were coded and analysed according to thematic content analysis. Results Our findings show users' lived experiences constitute three dimensions related to users' previous antibiotic use: (1) lay knowledge about medicines; (2) previous bacterial infections and (3) communication during the consultation. Lay knowledge encompasses the users' understanding of how antibiotics work in comparison to other drugs and experimentations they make with medication. Users' narratives about bacterial infections are divided into situations of urinary tract infections and antibiotic treatments for other conditions. Communication during the consultation is mainly characterized by a lack of shared knowledge and trust in the doctor–patient relationship. Discussion Users bring together knowledge learned from their own experiences to create the rationale, which shapes how they understand antibiotic use, bacterial infections and medical advice. These experiences are interwoven with information received from healthcare professionals (HPs) on these topics, creating a scenario that goes beyond professional information about antibiotic use. Users have knowledge about medication, antibiotics use and bacterial infection but do not have room to share it with HP, allowing lived experiences to take precedence over professional information. Conclusion Users ascribe symbolic meanings to antibiotics creating a lay knowledge frame, even if this knowledge is not scientifically correct. The personal experiences of bacterial infections and their treatment are also an important source of knowledge about antibiotic use and AMR among users. Users demand from their HPs both trust and willingness to listen to their health narratives and experiences. By considering lay knowledge as part of the assessment of a user's health condition, rather than dismissing it as erroneous and therefore unworthy of attention, HPs may enhance the compliance of users. Patient or Public Contribution Patients or community members did not participate in the design stage of the study. Primary Care patients were invited to participate as respondents of in‐depth interviews, which were carried out by the first author at a Primary Care Unit (PCU) in the suburb of Campo Limpo, Southern region of São Paulo, Brazil. Patients were interviewed after reading and signing a Free and Informed Consent Form, holding with them a copy of the Form. Among the final activities of the project, a feedback session at the same PCU is planned to report on the results of the study. All respondents will have the opportunity to contribute further information regarding their antibiotic use and exchange knowledge and experiences on antimicrobial resistance.

Abstract Background Patient‐reported Experience (PRE) is an emerging concept integrating patient perspectives and amplifying voices often marginalized in discussions surrounding health systems. However, it remains a challenge to use and integrate PREs when studying patient agency and access to quality services, particularly with data from multiple sources. In this article, using study materials from the Swiss MIWOCA project, we present and reflect upon a multistage PRE approach to study healthcare access. Methods The MIWOCA project, a study on healthcare access and quality among immigrant women with chronic illnesses living in Switzerland, provided data from multiple sources for the integration of PRE data. These sources included interviews with women (n = 48), two focus group discussions with women (n = 15), interviews with service providers (n = 12) and observations from stakeholder dialogues (n = 3). In addition, we utilized field notes, focus group illustration maps, patient vignettes and policy briefs to develop a multistage data linking model. PRE data served as starting themes and reference topics in each of the interlinked stages of knowledge production. Results Deploying PREs, we coherently linked the data from preceding stages and used them to inform subsequent stages. This, in turn, enabled us to identify, reflect and rectify factors limiting immigrant women's agency and access to quality services. Ultimately, the approach engaged patients as knowledge co‐producers for system‐level changes. This knowledge was transformed into a set of practice recommendations and a policy brief addressing ways to improve health systems to better serve immigrant women in Switzerland. Conclusions Building on PREs to systematically combine multiple data sources and engage patients continuously can improve our understanding of barriers in health systems. Beyond individual patient‐doctor encounters, a multistage PRE approach can identify structural problems and provide clues for resolving them at the systems level. The PREs approach presented may serve as an example and encourage more public health experts to consider PREs in future research and practice. Patient and Public Contribution Women with chronic illness and immigration experience contributed to interview‐guideline development, provided PREs in interviews, identified priority areas for health‐service change and actively participated in the development of practice recommendations.

Abstract Introduction Patients discharged following hospitalization for COVID‐19 require clear discharge protocols, information resources and communications to adequately prepare them to safely and successfully transition from hospital to home. Our study focuses on the patients' transition to recovering at home including their hospital discharge preparation and hospital experiences. Methods A qualitative descriptive study design involved interviewing patients who had been hospitalized for COVID‐19 in one urban Alberta, Canada centre. Purposive sampling was used to select patients from a centralized COVID‐19 hospital patient database stratified by month between March 2020 and February 2021. Other inclusion criteria (e.g., sex and age) were also considered. Semi‐structured interviews with patients were recorded, transcribed and analysed using thematic analysis. Data sufficiency and saturation were determined. Results Twelve patients shared their lived experiences and recovery journey from COVID‐19. Themes were reported under three main areas as framed by the study aim—the current status of patients recovering at home, including the supports they used to manage; their discharge process and preparation to go home; and their various hospital‐related experiences. Suggestions for improving aspects of the patient journey were also captured. Conclusion Findings provided details of the needs, information gaps and what matters most to patients when they are recovering from COVID‐19 at home, including their preparation to safely and successfully transition from hospital to home (i.e., feeling well prepared to go home, including being adequately assessed and having clear discharge protocols and communication). Key learnings were applied to improve or develop patient discharge and transition resources. Patient or Public Contribution A patient/family advisor and patient experience partners were involved throughout the study, codeveloping all aspects, from the study design to the reporting and application of the findings. Leading into the study, patient experiences and feedback regarding the home from hospital recovery journey informed multiple aspects, including the codevelopment of the interview guide.

Abstract Background Patient experience is a complex phenomenon that presents challenges for appropriate and effective measurement. With the lack of a standardized measurement approach, efforts have been made to simplify the evaluation and reporting of patient experience by using single‐item measures, such as the Net Promoter Score (NPS). Although NPS is widely used in many countries, there has been little research to validate its effectiveness and value in the healthcare setting. The aim of this study was to systematically evaluate the evidence that is available about the application of NPS in healthcare settings. Methods Studies were identified using words and synonyms that relate to NPS, which was applied to five electronic databases: Medline, CINAHL, Proquest, Business Journal Premium, and Scopus. Titles and abstracts between January 2005 and September 2020 were screened for relevance, with the inclusion of quantitative and qualitative studies in the healthcare setting that evaluated the use of NPS to measure patient experience. Results Twelve studies met the inclusion criteria. Four studies identified benefits associated with using NPS, such as ease of use, high completion rates and being well‐understood by a range of patients. Three studies questioned the usefulness of the NPS recommendation question in healthcare settings, particularly when respondents are unable to select their service provider. The free‐text comments section, which provides additional detail and contextual cues, was viewed positively by patients and staff in 4 of 12 studies. According to these studies, NPS can be influenced by a wide range of variables, such as age, condition/disease, intervention and cultural variation; therefore, caution should be taken when using NPS for comparisons. Four studies concluded that NPS adds minimal value to healthcare improvement. Conclusion The literature suggests that many of the proposed benefits of using NPS are not supported by research. NPS may not be sufficient as a stand‐alone metric and may be better used in conjunction with a larger survey. NPS may be more suited for use in certain healthcare settings, for example, where patients have a choice of provider. Staff attitudes towards the use of NPS for patient surveying are mixed. More research is needed to validate the use of NPS as a primary metric of patient experience. Patient or Public Contribution Consumer representatives were provided with the research findings and their feedback was sought about the study. Consumers commented that they found the results to be useful and felt that this study highlighted important considerations when NPS data is used to evaluate patient experience.

Abstract Introduction Remote home monitoring models were implemented during the COVID‐19 pandemic to shorten hospital length of stay, reduce unnecessary hospital admission, readmission and infection and appropriately escalate care. Within these models, patients are asked to take and record readings and escalate care if advised. There is limited evidence on how patients and carers experience these services. This study aimed to evaluate patient experiences of, and engagement with, remote home monitoring models for COVID‐19. Methods A rapid mixed‐methods study was carried out in England (conducted from March to June 2021). We remotely conducted a cross‐sectional survey and semi‐structured interviews with patients and carers. Interview findings were summarized using rapid assessment procedures sheets and data were grouped into themes (using thematic analysis). Survey data were analysed using descriptive statistics. Results We received 1069 surveys (18% response rate) and conducted interviews with patients (n = 59) or their carers (n = 3). ‘Care’ relied on support from staff members and family/friends. Patients and carers reported positive experiences and felt that the service and human contact reassured them and was easy to engage with. Yet, some patients and carers identified problems with engagement (e.g., hesitancy to self‐escalate care). Engagement was influenced by patient factors such as health and knowledge, support from family/friends and staff, availability and ease of use of informational and material resources (e.g., equipment) and service factors. Conclusion Remote home monitoring models place responsibility on patients to self‐manage symptoms in partnership with staff; yet, many patients required support and preferred human contact (especially for identifying problems). Caring burden and experiences of those living alone and barriers to engagement should be considered when designing and implementing remote home monitoring services. Patient or Public Contribution The study team met with service users and public members of the evaluation teams throughout the project in a series of workshops. Workshops informed study design, data collection tools and data interpretation and were conducted to also discuss study dissemination. Public patient involvement (PPI) members helped to pilot patient surveys and interview guides with the research team. Some members of the public also piloted the patient survey. Members of the PPI group were given the opportunity to comment on the manuscript, and the manuscript was amended accordingly.

Abstract Background The Bowel Screening Wales complex polyp removal service was introduced to address variations in surgery rates for screen‐detected complex benign colorectal polyps, to improve the quality of the screening service and to make management of these polyps more equitable across Wales. Little is known about patient experiences and the potential impact on quality of life when undergoing complex polyp removal. This study is part of a wider research programme evaluating the decision‐making, pathways and outcomes from complex polyp removal. Objective This study aimed to understand experiences of having a complex polyp removed and how this may influence quality of life. Design Semi‐structured telephone interviews were conducted, and a thematic approach was used for data analysis. Setting and Participants All participants had a complex polyp removed after a positive stool test and review by Bowel Screening Wales' Network Multi‐Disciplinary Team. Results Twenty‐one participants were interviewed. Most participants had their complex polyps removed endoscopically and reported no or minor problems or negative outcomes following their procedure. For a small minority, worse problems (e.g., pain, bowel dysfunction) and negative outcomes (e.g., cancer) followed their procedures. Most participants felt supported and reassured throughout their procedures. Any physical and emotional changes to quality of life were mainly linked to procedure outcomes. Discussion Experiences of complex polyp removal were generally positive, with minimal changes in quality of life. Conclusions While most people had a positive experience of having a complex polyp removed, support initiatives, such as counselling or signposting to coping strategies, may be helpful to reduce any potential negative effects of procedures on quality of life. Patient or Public Contribution Four patient and public involvement partners provided feedback on participant materials.

Abstract Introduction Multiple sclerosis (MS) is a chronic autoimmune disease with a substantial impact on quality of life and functional capability. The prognosis of MS has changed over time due to the development of increasingly effective therapies. As the knowledge and perceptions of persons living with chronic conditions increasingly have been acknowledged, it has become important to understand lived experiences with a focus on everyday events and experiences as a way of knowing and interpreting the world. Exploring context‐specific lived experiences as a source of knowledge about the disease and care may contribute to more precision in designing care services. The aim of this study was to explore the lived experience of persons living with MS in a Swedish context. Materials and methods A qualitative interview study was conducted with both purposeful and random sampling strategies, resulting in 10 interviews. Data were analyzed using inductive thematic content analysis. Results The analysis generated 4 overarching themes with 12 subthemes, the 4 themes were: perspectives on life and health, influence on everyday life, relations with healthcare, and shared healthcare processes. The themes are concerned with the patients’ own perspectives and context as well as medical and healthcare‐related perspectives. Patterns of shared experiences were found, for example, in the diagnosis confirmation, future perspectives, and planning and coordination. More diverse experiences appeared concerning relations with others, one's individual requirements, symptoms and consequences, and knowledge building. Conclusion The findings suggest a need for a more diverse and coproduced development of healthcare services to meet diverse needs in the population with greater acknowledgement of the person's lived experience, including consideration of the complexity of the disease, personal integrity, and different ways of knowing. Findings from this study will be further explored together with other quantitative and qualitative data.

Abstract Introduction Poor client−provider communication is a critical barrier to long‐term retention in care among people living with HIV. However, standardized assessments of this key metric are limited in Africa. We used the Roter Interaction Analysis System (RIAS) to quantitatively characterize patterns of person‐centred communication (PCC) behaviours in Zambia. Methods We enrolled pairs of people living with HIV making routine HIV follow‐up visit and their providers at 24 Ministry of Health‐facilities supported by the Centre for Infectious Disease Research in Zambia in Lusaka province between August 2019 and November 2021. Client−provider encounters were audio‐recorded and coded using RIAS by trained research staff. We performed latent class analysis to identify interactions with distinctive patterns of provider PCC behaviours (i.e. rapport building, person‐centred counselling, PCC micropractices [e.g. brief empathy statements], assessing barriers to care, shared decision‐making and leveraging discretionary power) and compared their distribution across client, provider, interaction and facility characteristics. Results We enrolled 478 people living with HIV and 139 providers (14% nurses, 73.6% clinical officers, 12.3% were medical officers). We identified four distinct profiles: (1) “Medically Oriented Interaction, Minimal PCC Behaviours” (47.6% of interactions) was characterized by medical discussion, minimal psychosocial/non‐medical talk and low use of PCC behaviours; (2) “Balanced Medical/Non‐medical Interaction, Low PCC Behaviours” (21.0%) was characterized by medical and non‐medical discussion but limited use of other PCC behaviours; (3) “Medically Oriented Interaction, Good PCC Behaviours” (23.9%) was characterized by medically oriented discussion, more information‐giving and increased use of PCC behaviours; and (4) “Highly person‐centred Interaction” (7.5%) was characterized by both balanced medical/non‐medical focus and the highest use of PCC behaviours. Nurse interactions were more likely to be characterized by more PCC behaviours (i.e. Class 3 or 4) (44.8%), followed by medical officers (33.9%) and clinical officers (27.3%) (p = 0.031). Longer interactions were also more likely to integrate more PCC behaviours (p < 0.001). Conclusions PCC behaviours are relatively uncommon in HIV care in Zambia, and often limited to brief rapport‐building statements and PCC micropractices. Strengthening PCC, such as shared decision‐making and leveraging discretionary power to better accommodate client needs and preferences, may be an important strategy for improving the quality in HIV treatment programmes.

Abstract Introduction Cardiac disease affects an estimated 1%–4% of all pregnancies and is a leading cause of maternal morbidity and mortality. There is a lack of data on the healthcare experiences of affected women to inform health service delivery and person‐centred care. This study sought to explore and understand the healthcare experiences of women with cardiac disease in pregnancy and postpartum. Methods This qualitative study used semi‐structured interviews with women who had cardiac disease in pregnancy or the first 12 months postpartum. Data were analysed using thematic analysis. Results Participants were 25 women with pre‐existing or newly diagnosed acquired, genetic and congenital cardiac disease. Analysis of the interviews highlighted the discrepancy between care aspirations and experiences. The participants had a wide range of cardiac diseases and timing of diagnoses, but had similar healthcare experiences of being dismissed, not receiving the information they required, lack of continuity of care and clinical guidelines and of feeling out of place within a healthcare system that did not accommodate their combined needs as a mother and a cardiac patient. Conclusion This study identified a lack of person‐centred care and responsiveness of the healthcare system in providing fit‐for‐purpose healthcare for women with complex disease who are pregnant or new mothers. In particular, cardiac and maternity care providers have an opportunity to listen to women who are the experts on their emergent healthcare needs, contributing to development of the knowledge base on the healthcare experiences of having cardiac disease in pregnancy and postpartum. Patient or Public Contribution Public and patient input into the value and design of the study was gained through NSW Heart Foundation forums, including the Heart Foundation's women's patient group.

Abstract Background Countries are adapting their health and social care systems to better meet the needs of growing populations with (multiple) chronic conditions. To guide this process, assessment of the ‘patient experience’ is becoming increasingly important. For this purpose, the Person‐Centred Coordinated Care Experience Questionnaire (P3CEQ) was developed in the United Kingdom, and translated into several languages. Aim This study aimed to assess the internal and construct validity of the Dutch P3CEQ to capture the experience of person‐centred coordinated care of people with chronic conditions in the Netherlands. Participants and Methods Adults with chronic conditions (N = 1098) completed the Dutch P3CEQ, measures of health literacy and patient activation, and reported the use and perceived quality of care services. Data analysis included Principal Component and reliability analysis (internal validity), analysis of variance and Student's T‐tests (construct validity). Results The two‐component structure found was pretty much the same as in the UK validation study. Sociodemographic correlates also resembled those found in the United Kingdom. Women, persons who were less educated, less health‐literate or less activated experienced less person‐centred coordinated care. P3CEQ scores correlated positively with general practitioner performance scores and quality ratings of the total care received. Conclusion The Dutch P3CEQ is a valid instrument to assess the experience of person‐centred coordinated care among people with chronic conditions in the Netherlands. Awareness of inequity and more attention to communication skills in professional training are needed to ensure that care professionals better recognize the needs of women, lower educated or less health‐literate persons, and improve their experiences of care. Patient Contribution The P3CEQ has been developed in collaboration with a range of stakeholders. Eighteen persons with (multiple) chronic conditions participated as patient representatives and codesign experts in (four) codesign workshops. Other patient representatives participated in cognitive testing of the English‐language instrument. The usability of the P3CEQ to capture the experience of person‐centred coordinated care of older persons has been examined by interviewing 228 older European service users, including 13 living in the Netherlands, as part of the SUSTAIN project. More than a thousand persons with chronic conditions participated in the validation study of the Dutch P3CEQ.

Abstract Aims Heart failure (HF) substantially limits the ability of patients to engage in physical activities. A detailed understanding of how patients experience these limitations is required to develop valid and sensitive measures for use in clinical research. This qualitative study was designed to provide a thorough description of how HF patients experience physical activity limitations in their daily lives. Methods and results Semi‐structured interviews were conducted with 40 HF patients. Interview transcripts were coded with the aim of identifying key aspects of physical activity. Patients were divided between HF with preserved ejection fraction (n = 21, 52.5%) and HF with reduced ejection fraction (n = 19, 47.5%); the majority of patients were New York Heart Association Class II (n = 22, 52.5%) or Class III (n = 16, 40.0%). Relevant physical activity themes, including mobility and broader daily function areas, were identified. The most frequently reported mobility limitations involved difficulty walking (up a steep incline, up steps, and long distances), limited walking speed, difficulty standing for long periods of time, and difficulty carrying and lifting objects. These limitations were principally related to three HF symptoms: dyspnoea, tiredness/fatigue, and peripheral oedema. Patients adapted to their symptoms and related mobility limitations in several ways, including taking rests during an activity, doing an activity more slowly, and avoiding/refraining from an activity altogether. The broader daily function areas most commonly impacted by the mobility limitations were housework, exercising or playing sports, and going shopping. Conclusions Heart failure patients report numerous physical activity limitations. These specific mobility and daily function areas can be measured using clinical outcome assessments (e.g. patient‐reported outcomes and performance outcomes) in clinical trials and observational research. Accelerometry can be used to contribute to a holistic picture of patient functioning by passively collecting this type of data.

Abstract Background Involvement of end‐users in research can enhance its quality, relevance, credibility and legitimacy; however, the processes through which these changes occur are unclear. Our aim was to explore a coproduction research team's experiences of their involvement in research about young people with type 1 diabetes mellitus (T1DM). Methods Semi‐structured interviews conducted with two young people with T1DM, two parents, one diabetes educator, one endocrinologist‐scientist and one research‐engineer explored experiences of coproduction research and its impact on both the research and the participants. Drawing on grounded theory, we undertook inductive analysis and storyline mapping to develop a theorized framework of mechanisms supporting the process of coproduction in T1DM research with young people. Findings The framework involving coproduction partners in research about young people with type 1 diabetes centres on the unique expertize that different team members bring to the research and describes conditions that enable expert contributions through the enactment of a variety of expert roles. The framework also describes outcomes—the impact of the expert contributions on both the research and the team members involved. Conclusion The findings of this small exploratory study provide a sound foundation to develop further understanding about structures and processes that are integral for the success of coproduction research teams. The framework may provide a guide for researchers planning to incorporate coproduction, on elements that are important for this model of research to succeed. It may also inform coproduction impact assessment research and be used for hypothesis testing and expansion in future studies.

Abstract Background The English Cancer Patient Experience Survey (CPES) is a regularly conducted survey measuring the experience of cancer patients. We studied the survey's underlying structure using factor analysis to identify potential for improvements in reporting or questionnaire design. Methods Cancer Patient Experience Survey 2015 respondents (n = 71,186, response rate 66%) were split into two random subgroups. Using exploratory factor analysis (EFA) on the first subgroup, we identified the survey's latent structure. EFA was then applied to 12 sets of items. A first (“core”) set was formed by questions that applied to all participants. The subsequent sets contained the “core set” plus questions corresponding to specific care pathways/patient groups. We used confirmatory factor analysis (CFA) on the second data subgroup for cross‐validation. Results The EFA suggested that five latent factors underlie the survey's core questions. Analysis on the remaining 11 care pathway/patient group items also indicated the same five latent factors, although additional factors were present for questions applicable to patients with an overnight stay or those accessing specialist nursing. The five factors models had an excellent fit (comparative fit index = 0.95, root mean square error of approximation = 0.045 for core set of questions). Items loading on each factor generally corresponded to a specific section or subsection of the questionnaire. CFA findings were concordant with the EFA patterns. Conclusion The findings suggest five coherent underlying sub‐constructs relating to different aspects of cancer health care. The findings support the construction of evidence‐based composite indicators for different domains of experience and provide options for survey re‐design.

Abstract Background Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative condition of the central nervous system that commonly strikes in young adulthood and has no cure. Many people living with MS (PwMS) will have significant contact with a range of healthcare professionals (HCPs). To achieve optimal health outcomes in MS, it is important to understand factors that contribute to positive or negative healthcare experiences. Previous studies have shown that PwMS want clear communication and in‐depth relationships with their HCPs. However, many studies have lacked qualitative feedback from HCPs. Objective This study aimed to investigate healthcare experiences of PwMS and HCPs and identify areas that are working well and areas that could be improved. Methods Semistructured interviews with 15 PwMS and 11 HCPs (seven neurologists, four MS nurses) from across Australia were conducted. Interviews were transcribed verbatim and analysed thematically. Results Both PwMS and HCPs valued clear communication, recognized uncertainties associated with MS and highlighted the importance of rapport. PwMS focused on decision‐making, understanding roles and expectations, self‐directed management and their needs for support. HCPs discussed issues related to medical management, providing hope and reassurance, barriers to healthcare and multidisciplinary care. Conclusion Greater transparency and communication, particularly around the approach to care and the roles played by HCPs, is likely to enhance healthcare experiences and contribute to better health outcomes for PwMS. Public Contribution PwMS and HCPs volunteered to be interviewed, and PwMS assisted with the development of interview content and structure.

Purpose: To understand good care from the perspective of hospitalised older persons., Background: Older persons are the largest group of hospital users, and numbers will increase in the next decades. Hospital organisations are attempting to transform traditional care models to meet the specialised needs of hospitalised older persons. To achieve this, healthcare providers including nurses and administrators need to understand the perspectives of hospitalised older persons on what constitutes good care. This knowledge is critical to nursing to ensure that care aligns with the perceived needs of hospitalised older persons. However, good care from the viewpoints of hospitalised older persons remains ambiguous and poorly delineated in the literature., Methods: We conducted a concept analysis using the pragmatic utility method. To identify peer-reviewed articles, we searched CINAHL, MedLine, PsycINFO, Scopus and Embase databases for related literature using the keywords and related terms to 'good care', 'hospital or acute care' and 'older persons'., Results: Twenty-two peer-reviewed articles out of 2144 search results were included. The heterogeneity of older persons' perspectives and limitations in the literature on good care led to a tentative understanding. Good care, a partially mature concept, is the provision of person-centred, culturally sensitive, holistic and integrated care that fosters autonomy, control and participation, resulting in a sense of belonging, smooth transitions, optimal management of clinical conditions, satisfaction in care and informed older persons and family caregivers., Conclusion: Older persons are a heterogeneous group with diverse perceptions of good care. Instead of seeking a common understanding of good care, efforts should be focused on identifying individual preferences, values and goals of hospitalised older persons., Implications for Practice: The components of good care are important for many hospitalised older persons and can serve as a starting point for improvements in practice settings. However, this understanding is tentative and may overlook critical aspects of care at an individual level. Hospital organisations, healthcare providers and nurses should be cognizant of this limitation and cultivate adaptability for an individualised approach to care., (© 2024 The Author(s). International Journal of Older People Nursing published by John Wiley & Sons Ltd.)

As indications for hereditary cancer genetic testing (GT) for patients with breast cancer (BC) expand, breast surgery teams offer GT to newly diagnosed patients to inform surgical plans. There is, however, limited data on the experiences of patients undergoing cancer GT by non-genetic providers. This study used in-depth interviews with 21 women recently diagnosed with BC at a large academic health system to capture their experiences. Post-positivist codebook thematic analysis was used to identify major themes from the interviews. Participants reported an overall positive experience of this GT process, stating that they prefer GT at an existing appointment shortly after their diagnosis, even though they described the conversation as brief. Many participants indicated thinking about or desiring GT before the offer was made. Interestingly, most participants did not see surgical decision-making as the main reason for GT and were instead motivated by concern for relatives and to have complete information. Interview data indicated areas for improvement in patient-provider communication, and most participants agreed that additional reference information on GT in the form of written or video materials would be helpful. Offering GT at an initial breast surgery appointment is acceptable and desired by patients with a new BC diagnosis and should be considered as a way to increase access to GT for these patients. However, additional information for patients is needed to close gaps in communication and provide a trustworthy reference following a busy medical appointment., (© 2024 National Society of Genetic Counselors.)

Purpose: Near real-time patient experience feedback (NRTPEF) can enable a patient-centric, immediate service recovery but has not been widely used in inpatient rehabilitation. We 1) assess the utility, feasibility, and acceptability of implementing a new NRTPEF, perceived by patients and providers; and 2) understand how the NRTPEF became embedded into routine provider practices., Materials and Methods: Mixed methods process evaluation of the 8-month implementation of an innovative NRTPEF in an inpatient rehabilitation unit, using interviews and focus groups with all the service-unit leaders and interviews with a randomised sample of patients. Beyond descriptive statistics and content analysis, the Normalisation Process Theory (NPT) informed a framework analysis., Results: Patients and service-unit leaders perceived high utility in the NRTPEF (median: 9 for both; 0-10 scale) and qualitative comments emphasised the value of providing/obtaining timely feedback. The system was found feasible and acceptable for patients (median: 9.5), but with an improvement margin for providers (median: 7.3). Suggestions include strengthening the data-relay format. Even in the pilot form, providers found the NRTPEF became embedded into practice (median 10; average: 8.6). The analysis based on the NPT shows how providers saw differential value, engaged with, and used the patient feedback into reconfigured practices., Conclusion: An innovative NRTPEF was found useful, feasible and acceptable, but with refinement opportunities before scale-up., (© 2024 The Author(s). The International Journal of Health Planning and Management published by John Wiley & Sons Ltd.)

Objective: Dietitians have a central role in eating disorder (ED) treatment, however few studies exist investigating therapeutic aspects of dietetic care and factors influencing the dietitian-patient relationship. To address the gap, this study aimed to use a qualitative description approach to explore the experiences of delivering and receiving dietetic care in ED treatment in the UK., Method: Semi-structured interviews were conducted with 6 specialist ED dietitians and focus groups with 11 recovered ED patients. Interviews were transcribed and inductive thematic analysis was performed to identify key themes describing the data., Results: Six key themes were generated: (1) Building trust, (2) Appropriate timing, (3) Adapting, (4) Dietitians as experts, (5) Boundaries, and (6) Difficult relationships. Participants highlighted the importance of building trust and considering nutritional risk and readiness in treatment approach. Patients expressed a desire for dietitians to have experience in EDs, facilitating understanding of their illness. However, dietitians identified the nature of EDs making their role challenging at times., Discussion: This study described various factors affecting dietetic care in EDs and provided a valuable insight into patients' perceptions of treatment. The findings support advancements in ED dietitians' knowledge and understanding, helping to enhance quality of care., (© 2024 The Author(s). European Eating Disorders Review published by Eating Disorders Association and John Wiley & Sons Ltd.)

Objective: The purpose of this study was to gain an in-depth understanding of the lived experiences of women with CVD regarding their care by a pregnancy heart team (PHT) during pregnancy and the immediate postpartum period., Methods: Using a qualitative phenomenological study, data were collected through semi-structured interviews with 13 women receiving follow-up care from a PHT at a large tertiary center. Data were collected between December 2022 and September 2023, and thematic content analysis was conducted., Results: The lived experiences of women with CVD were reflected in the PHT by two main themes: "emotional distress" and "(dis-)organization of care." The "emotional distress" theme had sub-themes of "awareness and impact of CVD on pregnancy," "loneliness," and "need for psychological support." The theme of "(dis)organization of care" was expressed through the sub-themes of "(dis-)continuity of care" and "(expected) skills of healthcare providers.", Conclusion: The current study findings highlight the impact of CVD on pregnancy and the emotional challenges faced by women with CVD during the course of their pregnancy. Improvements in accessibility, timeliness, reciprocity and shared decision-making, and psychological support could contribute to more patient-centered care., (© 2024 International Federation of Gynecology and Obstetrics. Published by John Wiley & Sons Ltd.)

Background: Recovery Colleges (RCs) represent an approach to enhancing mental wellbeing through education, lived experience and co-production. Despite their increasing presence, scant literature explores the operationalisation of RCs and their embodiment of co-production principles. The aim of this scoping review was to investigate the operationalisation of RCs and their application of co-production in RCs located in high-income countries over the past decade., Methods: Employing an established scoping review methodology, searches were conducted across seven academic databases. Ten primary studies met the inclusion criteria. In addition, stakeholders were consulted to validate themes and uncover knowledge gaps., Results: Findings suggest that RCs are inherently idiosyncratic, adapted to suit local contexts. Discussions persist regarding their optimal institutional contexts and positioning and the interpretation of key terms such as 'recovery' and 'co-production', influencing daily operations and stakeholder involvement. Challenges surrounding measuring success against fidelity criteria underscore the need for a broader understanding of RC value and sustainability., Conclusion: This review offers a synopsis of the existing literature offering insights concerning the operationalisation of RCs. Through a synthesis of diverse primary studies, it systematically identifies and describes the operational nuances within the RC landscape and the fundamental elements underpinning RC operations, while shedding light on critical knowledge gaps in both research and practice. SO WHAT?: This review underscores the importance of a broader understanding of RC value and sustainability, offering insights for both research and practice in the field of mental health and wellbeing. This review highlights the significance of further exploration and refinement of RC operationalisation to enhance their effectiveness and impact in supporting mental wellbeing., (© 2024 The Authors. Health Promotion Journal of Australia published by John Wiley & Sons Australia, Ltd on behalf of Australian Health Promotion Association.)

Abstract Background People with multiple sclerosis (MS), who are often immunocompromised, require complex care and engage with a variety of health‐care providers to manage their health. Objective To elucidate people with MS' experiences of accessing health care during the COVID‐19 pandemic in Australia. Design A qualitative study involving semi‐structured interviews and thematic analysis. Settings and participants Eight adults with a clinical diagnosis of MS participated in telephone or video call interviews between June and July 2020. Results Participants were aware that having MS made them more vulnerable to contracting COVID‐19. In some cases, usual care was postponed or not sought. Some circumstances warranted the risk of a face‐to‐face consultation. Benefits of telehealth consultations included improved access, convenience and being contact‐free. In comparison with video consultations, those via telephone were considered less personal and limited capacity to read body language, and for physical examination. Most participants hoped to incorporate telehealth into their future health‐care routines. Discussion and conclusion Personal risk assessment and trust in health‐care professionals are determinants of the mode through which people with MS accessed health care during the COVID‐19 pandemic. Telehealth has been a valuable tool to mitigate COVID‐19 transmission through enabling contact‐free consultations. People with MS may find specific value in video consultations, which enable visualization of physical function. There is a need for training and support for all clinicians to conduct remote consultations. Patient or public contribution This study was conducted by a team comprised of four people with MS, a neurologist and four health services researchers.

Abstract Background There has been a paradigm shift in cancer treatment from curing disease to both curing disease and caring for patients. In terms of care for patients, the opinions of patients and their families are important for improving medical services. Aim The opinions of patients and families were collected at Shizuoka Cancer Center (SCC) and examined from the standpoint of characteristics, response status, and temporal changes. Methods Patients' and families' opinions submitted to suggestion boxes at SCC over an 11‐year period (2005–2015) were analyzed. Opinions were categorized as complaints or compliments, with sub‐categories including “facilities, goods, and medical care,” “people,” “time,” and “other.” The status of facilities' response to complaints was categorized as “responded,” “did not respond”, and “difficult to respond”. Results Changes in the number of opinions and content over time were examined. In total, 3419 opinions were collected; 69.1% were complaints, and 30.5% were compliments. Of the complaints, 53.4% were related to “facilities, goods, and medical care” (mainly focusing on “poor product quality” and “shortage of goods”), 38.7% were related to “people,” and 7.7% to “time.” Of the compliments, 82.4% were about “people,” all of which concerned facility staff. Facilities' responses to complaints were as follows: “responded” (42.4%), “did not respond” (14.3%), and “difficult to respond” (43.3%). Conclusion Understanding patients' and families' opinions is effective for strengthening trust between patients and healthcare professionals, promoting holistic care.

Abstract Aims This study aimed to analyse community management of patients during the symptomatic period prior to admission with acute decompensated heart failure (ADHF). Methods and results We conducted a prospective, two‐centre, two‐country observational study evaluating care pathways and patient experience in patients admitted to hospital with ADHF. Quantitative and qualitative data were gathered from patients, carers, and general practitioners (GPs). From the Irish centre, 114 patients enrolled, and from the English centre, 50 patients. Symptom duration longer than 72 h prior to hospitalization was noted among 70.4% (76) Irish and 80% (40) English patients, with no significant difference between those with a new diagnosis of HF [de novo HF (dnHF)] and those with known HF [established HF (eHF)] in either cohort. For the majority, dyspnoea was the dominant symptom; however, 63.3% (31) of these Irish patients and 47.2% (17) of these English patients did not recognize this as an HF symptom, with no significant difference between dnHF and eHF patients. Of the 46.5% (53) of Irish and 38% (19) of English patients reviewed exclusively by GPs before hospitalization, numbers prescribed diuretics were low (11.3%, six; and 15.8%, three, respectively); eHF patients were no more likely to receive diuretics than dnHF patients. Barriers to care highlighted by GPs included inadequate access to basic diagnostics, specialist support and up‐to‐date patient information, and lack of GP comfort in managing HF. Conclusion The aforementioned findings, consistent across both health care jurisdictions, show a clear potential to intervene earlier and more effectively in ADHF or to prevent the need for hospitalization.

Abstract Background Patient and public involvement and engagement (PPIE) is recognized as important for improved quality in health service provision and research. Vitamin B12 deficiency is one area where PPIE has potential to benefit patients, as patients often report sub‐optimal care due to diagnostic delay, insufficient treatment and poor relationships with health professionals. Objective In an effort to engage an understudied patient population in health‐care quality and safety discussions, and provide patients with an opportunity to have a voice, contribute to research priorities and express their current quality and safety concerns, we hosted a PPIE workshop. Methods One researcher (with lived experience) facilitated a one day workshop with 12 patients with varied demographics. The workshop had four components (a) one‐to‐one sessions with an artist, (b) quality and safety research/education priority setting, (c) comments on research proposals, and (d) development of a PPIE group for future research. Results All elements of the workshop elicited a number of quality and safety priorities for the group. Priority setting highlighted issues with interpretation of test results, symptom‐based treatment, self‐medication and relationship with primary care health‐care professionals. One of the major safety issues highlighted in the visual art element was feeling ignored, silenced or not listened too by health‐care professionals. Discussion Visual art methods to express experiences of health, and research priority setting tasks achieved the aim of providing patients with an opportunity to have a voice and express concerns about health‐care quality and safety issues. The addition of visual art allowed patients to articulate emotions and impacts on everyday life associated with quality and safety. Patient or public contribution A public contributor was involved in preparation of this manuscript. The event aimed to enable PPIE contribution in future research.

Abstract Background Physician associates (PAs) are one of many new mid‐level health practitioner roles being introduced worldwide. They are a recent innovation in English hospitals. Patient confusion with novel mid‐level practitioner titles and roles is well documented, alongside evidence of a positive association between patients’ ability to identify practitioners and patient satisfaction. No prior research developed an intervention to introduce PAs or any other new practitioner role to hospital patients. Objective To develop, with patient and public involvement and engagement (PPIE), an intervention for introducing the PA role to hospital patients, and to test feasibility. Methods Intervention development was underpinned by an experience‐based co‐design approach. Workshop participants generated ideas for introducing PAs, subsequently explored in semi‐structured interviews with hospital patients (n = 13). Interview findings were used by participants in a second workshop to design the intervention. Feasibility of the intervention was assessed in relation to its acceptability and efficacy using semi‐structured interviews with hospital patients (n = 20) and PAs (n = 3). Results The intervention developed was a patient information leaflet. It was considered feasible to use in the hospital setting, helpful to patients in understanding the PA role and acceptable to both patients and PAs. The intervention was also appreciated by patients for providing reassurance of care and support. Conclusions An experience‐based co‐design approach enabled development of an intervention tailored to patients’ experiential preferences. Positive evidence of feasibility and utility is encouraging, supporting future larger‐scale testing. Patient and public contribution PPIE representatives were involved in the study design, intervention development and data interpretation.

Abstract Background Patients and carers should be actively involved in patient safety and empowered to use person‐centred approaches where they are asked to both identify safety concerns and partner in preventing them. Objectives The aim of this study was to co‐design a patient safety guide for primary care (PSG‐PC) to support patients and carers to address key patient safety questions and identify key points where they can make their care safer. The objectives were to i) identify when and how patients and carers can be involved in primary care patient safety, and ii) identify the relevant information to include in the PSG‐PC. Design An experience‐based co‐design approach. Setting and Participants We conducted three workshops with patients, carers, community pharmacists and general practitioners to develop and refine the PSG‐PC. Results Participants identified both explicit and implicit issues of primary care patient safety especially relating to technical and relational components of involving patients and carers. The importance of communication, understanding roles and responsibilities, and developing partnerships between patients and health‐care providers were considered essential for actively involving patients in patient safety. Co‐developing the PSG‐PC provided insight to improve care to develop the PSG‐PC. Discussion The PSG‐PC is the first guide to be developed for primary care, co‐designed with patients, carers, general practitioners and pharmacists. The PSG‐PC will support patients and carers to partner with health‐care professionals to improve patient safety addressing international and national priorities to continuously improve patient safety.

Abstract Background Finger prick blood glucose (BG) monitoring remains a mainstay of management in people with type 2 diabetes (T2DM) who take sulphonylurea (SU) drugs or insulin. We recently examined patient experience of BG monitoring in people with type 1 diabetes (T1DM). There has not been any recent comprehensive assessment of the performance of BG monitoring strips or the patient experience of BG strips in people with T2DM in the UK. Methods An online self‐reported questionnaire containing 44 questions, prepared following consultation with clinicians and patients, was circulated to people with T2DM. 186 responders provided completed responses (25.5% return rate). Fixed responses were coded numerically (eg not confident = 0 fairly confident = 1). Results Of responders, 84% were treated with insulin in addition to other agents. 75% reported having had an HbA1c check in the previous 6 months. For those with reported HbA1c ≥ 65 mmol/mol, a majority of people (70%) were concerned or really concerned about the shorter term consequences of running a high HbA1c This contrasted with those who did not know their recent HbA1c, of whom only 33% were concerned/really concerned and those with HbA1c

Abstract Background/objective Oncology guidelines recommend earlier communication with patients about prognosis and goals‐of‐care in serious illness. However, current evidence leaves gaps in our understanding of the experience of these conversations. This analysis evaluates the patient and clinician experience of a conversation using a Serious Illness Conversation Guide (SICG). Design/setting Secondary analysis from a cluster‐randomized clinical trial in a northeastern cancer center. Participants Physicians, advanced practice clinicians, and patients with advanced cancer who received the intervention. Intervention SICG, clinician training, systems‐changes. Main outcomes and measures The patient questionnaire assessed perceptions of the conversation and impact on anxiety, hopefulness, peacefulness, sense of control over medical decisions, closeness with their clinician, and behaviors. The clinician questionnaire assessed feasibility, acceptability, and impact on satisfaction in their role. Results We enrolled 54 clinicians and 163 patients; 41 clinicians and 118 patients had a SICG discussion. Most patients described the conversation as worthwhile (79%) and reported no change or improvement in their sense of peacefulness, hopefulness, and anxiety (on average 79%); 56% reported feeling closer with their clinician. Qualitative patient data described positive behavior changes, including enhanced planning for future care and increased focus on personal priorities. Nearly 90% of clinicians agreed that the SICG facilitated timely, effective conversations, and 70% reported increased satisfaction in their role. Conclusion Conversations using a SICG were feasible, acceptable, and were associated with positive experiences for both patients and clinicians in oncology in ways that align with national recommendations for serious illness communication. This trial is registered at ClinicalTrials.gov: NCT01786811 https://clinicaltrials.gov/ct2/show/NCT01786811.