The role and limitations of electronic medical records versus patient interviews for determining symptoms of, underlying comorbidities of, and medication use by patients with COVID-19.

Electronic medical records (EMRs) are important for rapidly compiling information to determine disease characteristics (eg, symptoms) and risk factors (eg, underlying comorbidities, medications) for disease-related outcomes. To assess EMR data accuracy, agreement between EMR abstractions and patient interviews was evaluated. Symptoms, medical history, and medication use among patients with COVID-19 collected from EMRs and patient interviews were compared using overall agreement (ie, same answer in EMR and interview), reported agreement (yes answer in both EMR and interview among those who reported yes in either), and κ statistics. Overall, patients reported more symptoms in interviews than in EMR abstractions. Overall agreement was high (≥50% for 20 of 23 symptoms), but only subjective fever and dyspnea had reported agreement of ≥50%. The κ statistics for symptoms were generally low. Reported medical conditions had greater agreement with all condition categories (n = 10 of 10) having ≥50% overall agreement and half (n = 5 of 10) having ≥50% reported agreement. More nonprescription medications were reported in interviews than in EMR abstractions, leading to low reported agreement (28%). Discordance was observed for symptoms, medical history, and medication use between EMR abstractions and patient interviews. Investigations using EMRs to describe clinical characteristics and identify risk factors should consider the potential for incomplete data, particularly for symptoms and medications.

Qualitative Analysis of Patient Experiences Reaching Urethroplasty for Recurrent Urethral Stricture Disease.

PURPOSE: Despite the inferior outcomes, urethral stricture patients often undergo multiple endoscopic procedures prior to undergoing definitive urethroplasty. We sought to qualitatively evaluate the patient experience of obtaining urethroplasty to better understand the impact of this experience on quality of life. MATERIALS AND METHODS: Patients treated with urethroplasty between September 2019 and July 2021 were identified and invited to participate in our study if they had undergone ≥ 2 endoscopic procedures prior to urethroplasty. Semistructured telephone interviews were conducted, coded, and analyzed using an iterative inductive-deductive approach. RESULTS: Of the 105 urethroplasty patients during the study period, 50 (47.6%) had undergone ≥ 2 endoscopic procedures prior (IQR 3-5), of whom 20 participated in the study. Qualitative themes related to repeat endoscopic procedures included unmet treatment expectations, dissatisfaction with catheterization and repeat procedures, and negative impacts of recurrent stricture symptoms and treatments on quality of life. External factors associated with a delay to urethroplasty included financial constraints, surgeon access, and time off work. CONCLUSIONS: A trajectory of declining quality of life and unmet treatment expectations are the primary factors driving the decision to proceed with urethroplasty. However, external factors such as recovery costs and access to specialists play important roles in delaying surgery. These findings illustrate the need for improved community provider education and patient counseling to better inform expectations of both patients and providers with various treatment outcomes. Furthermore, these data highlight the need to improve access to specialized care for urethral stricture patients.

A Pilot Survey on the Perceptions of Pediatric Subspecialty Fellows and Program Directors on Virtual Compared with In-Person Interview Experiences.

Pediatric fellowship programs have conducted virtual interviews since the start of the COVID-19 pandemic in 2020. In this national survey of fellowship program directors and fellows interviewed in-person and virtually, fellowship program directors and fellows formed accurate impressions, regardless of format, but our data did not clearly support one interview format over another.

Vascular In-person for Students In the match Trial: An investigation of postinterview site visits to address the limitations of virtual interviews.

PURPOSE: The graduate medical education community implemented virtual residency interviews in response to travel restrictions during the COVID-19 pandemic, and this approach has persisted. Although many residency applicants wish to visit in-person prospective training sites, such opportunities could bias programs toward those who are able to meet this financial burden, exacerbating equity concerns. One proposed solution is to offer applicants the opportunity to visit only after a program's rank list is "locked," avoiding favoritism to applicants who visit, but allowing applicants to experience some of the camaraderie, geography, and local effects of an in-person visit. As debate about the optimal format of residency interviews continues, it is important to investigate whether in-person program visits, completed after program rank list certification, provide meaningful benefits to applicants in the residency match process. METHODS: All vascular programs entering the 2023 integrated vascular surgery residency match were invited to participate. Programs agreed to certify their National Resident Matching Program rank lists by February 1, 2023. Applicants then had the opportunity to visit the programs at which they interviewed. The particulars of the visit were determined by the individual programs. Applicants completed their standard rank list and locked on the standard date: March 1, 2023. Applicants then completed a survey regarding the impact of the visits on their rank order list decision-making. Program directors (PDs) completed a survey regarding their experiences as well. Data were collected using REDCap. RESULTS: Twenty-one of the 74 (28%) programs participated. Nineteen PDs completed the postinterview site visit survey (response rate 90%). Applicants interviewing at the participating programs (n = 112) were informed of the study, offered the opportunity to attend postinterview site visits, and received the survey. Forty-seven applicants responded (response rate 42%). Eighty-six percent of applicants stated that the visit impacted their rank list. Most important factors were esprit de corps of the program (86%), the faculty/trainees/staff (81%), and the physical setting (62%). Seventy-one percent of those participating spent ≤$800 on their visit. Eighty-one percent were satisfied with the process. Twenty-one percent of PDs would have changed their rank list if they could have based on the applicants' in-person visit. Sixty-three percent of the visit sessions cost the programs ≤$500, and 63% were satisfied with the process. CONCLUSIONS: This study is the first to document the impact of in-person site visits by applicants on a graduate medical education match process in one specialty. Our results suggest that this process provides meaningful data to applicants that helped them with their decision-making evidenced by most altering their rank lists, while avoiding some of the critical equity issues that accompany traditional in-person interviews. This may provide a model for future interview processes for residency programs.

Internal Medicine Residency Program Applicant Perceptions of the SPLIT Recruitment Model Before and After Universal Virtual Interviews.

BACKGROUND: Enhancing residency recruitment with modifications to interviews has been an area of national interest, further catalyzed by the transition to universal virtual interviewing (UVI). In 2018, our internal medicine residency program redesigned the recruitment process using virtual interviews. OBJECTIVE: Evaluating this recruitment model allows programs to identify applicant perceptions of each component as they consider enhancements. DESIGN: The new model, termed "SPLIT," included separating optional applicant visit days (AVD) from interviews (S), a pre-interview supplemental form (P), learning program information from a dedicated website (L), virtual interviews (I), and flexible timing (remote interview day and site visit) (T). PARTICIPANTS: Applicants for the 2019 to 2023 Match who interviewed at one university-based internal medicine residency program. MAIN MEASURES: After rank list certification and before the annual Match, interviewed applicants were surveyed regarding their perceptions of the SPLIT process. Responses before (2019-2020 Matches) and after (2021-2023 Matches) UVIs were compared. KEY RESULTS: A total of 386 (75%) of 515 respondents favored video interviews. This preference was stronger in the post-UVI group (92%) than in the pre-UVI group (57%) (p < 0.001). In total, 76% of respondents attended an AVD (virtual or in-person). Applicants in the post-UVI group also favored having interviews separated from the AVD (p = 0.006) and optional AVDs (p < 0.001), more than those in the pre-UVI group. In the pre-UVI cohort, those who attended an in-person AVD tended to report a higher program understanding (OR 7.8), satisfaction with SPLIT (OR 2.1), and a better recruitment experience (OR 2.0). CONCLUSIONS: Virtual interviews were highly rated with increased preference following universal adoption. Optional AVDs separated from virtual interviews enhance applicant understanding of the program and were more effective when offered in-person before the pandemic-related restrictions. As programs begin to reintroduce in-person elements, the SPLIT recruitment model offers an innovative approach that addresses applicant and program needs.

Participants' perspectives of being recruited into a randomised trial of a weight loss intervention before colorectal cancer surgery: a qualitative interview study.

BACKGROUND: The period between cancer diagnosis and surgery presents an opportunity for trials to assess the feasibility of behaviour change interventions. However, this can be a worrying time for patients and may hinder recruitment. We describe the perspectives of patients with excess weight awaiting colorectal cancer surgery about their recruitment into a randomised trial of a prehabilitation weight loss intervention. METHODS: We interviewed the first 26 participants from the 8 recruitment sites across England in the 'CARE' feasibility trial. Participants were randomised into either usual care (n = 13) or a low-energy nutritionally-replete total diet replacement programme with weekly remote behavioural support by a dietitian (n = 13). The semi-structured interviews occurred shortly after recruitment and the questions focused on participants' recollections of being recruited into the trial. We analysed data rapidly and then used a mind-mapping technique to develop descriptive themes. Themes were agreed by all co-authors, including a person with lived-experience of colorectal surgery. RESULTS: Participants had a mean body mass index (± SD) of 38 kg/m2 (± 6), age of 50 years (± 12), and 42% were female. People who participated in the trial were motivated by the offer of structured weight loss support that could potentially help them improve their surgical outcomes. However, participants also had concerns around the potential unpalatability of the intervention diet and side effects. Positive attitudes of clinicians towards the trial facilitated recruitment but participants were disappointed when they were randomised to usual care due to clinical teams' overemphasis on the benefits of losing weight. CONCLUSIONS: Patients were motivated to take part by the prospect of improved surgical outcomes. However, the strong preference to be allocated to the intervention suggests that balanced communication of equipoise is crucial to minimise disappointment from randomisation to usual care and differential dropout from the trial. CLINICAL TRIAL REGISTRATION: ISRCTN39207707, Registration date 13/03/2023.

Patient- and caregiver-reported impact of symptoms in Duchenne muscular dystrophy.

INTRODUCTION/AIMS: To better understand the disease burden faced by individuals with Duchenne muscular dystrophy (DMD) of all ages and elucidate potential targets for therapeutics, this study determined the prevalence and relative importance of symptoms experienced by individuals with DMD and identified factors associated with a higher disease burden. METHODS: We conducted qualitative interviews with individuals with DMD and caregivers of individuals with DMD to identify potential symptoms of importance to those living with DMD. We subsequently performed a cross-sectional study to assess which symptoms have the highest prevalence and importance in DMD and to determine which factors are associated with a higher disease burden. RESULTS: Thirty-nine individuals, aged 11 years and above, provided 3262 quotes regarding the symptomatic burden of DMD. Two hundred participants (87 individuals with DMD and 113 caregivers) participated in a subsequent cross-sectional study. Individuals with DMD identified limitations with mobility or walking (100%), inability to do activities (98.9%), trouble getting around (97.6%), and leg weakness (97.6%) as the most prevalent and life altering symptomatic themes in DMD. The symptomatic themes with the highest prevalence, as reported by caregivers on behalf of those with DMD for whom they care, were limitations with mobility or walking (90.3%), leg weakness (89.2%), and emotional issues (79.6%). Steroid/glucocorticoid use (e.g., prednisone or deflazacort) was associated with a lower level of disease burden in DMD. DISCUSSION: There are many symptomatic themes that contribute to disease burden in individuals with DMD. These symptoms are identified by both individuals with DMD and their caregivers and have a variable level of importance and prevalence in the DMD population.

Perceptions of reproductive healthcare providers regarding their involvement in offering expanded carrier screening in fertility clinics: a qualitative study.

RESEARCH QUESTION: What are the main arguments of reproductive healthcare providers in favour or against their involvement in offering expanded carrier screening (ECS) for recessive disorders at fertility clinics in the Netherlands? DESIGN: Semi-structured interview study with 20 reproductive healthcare providers between May 2020 and January 2021. Participants included 11 gynaecologists, seven fertility doctors, one nurse practitioner and one clinical embryologist, recruited from academic medical centres (n = 13), peripheral facilities associated with academic centres (n = 4), and independent fertility treatment centres (n = 3) in the Netherlands. An interview guide was developed, and thematic content analysis was performed using ATLAS.ti software. RESULTS: Arguments of reproductive healthcare providers in favour of their potential involvement in offering ECS included: (i) opportunities offered by the setting; (ii) motivation to assist in reproduction and prevent suffering; and (iii) to counter unwanted commercialization offers. Arguments against involvement included: (i) lack of knowledge and familiarity with offering ECS; (ii) insufficient staff and resources, and potential high costs for clinics and/or couples; (iii) the emotional impact it may have on couples; (iv) perceived complexity of counselling and expected elongation of waiting lists; and (v) expected low impact on reducing the burden of diseases. Participants felt that more evidence and research on the costs-benefits, implications and demand are needed prior to their involvement. CONCLUSION: While agreeing that the field of medically assisted reproduction provides a unique opportunity to offer ECS, reproductive healthcare workers feel a lack of capability and limited motivation to offer ECS to all or a selection of couples at their fertility clinics.

Direct-to-consumer DNA testing: the perspectives and experiences of donor conceived young adults in the UK.

RESEARCH QUESTION: What meanings do donor conceived young adults give to direct-to-consumer DNA testing, and how does direct-to-consumer DNA testing relate to their lived experiences? DESIGN: Thirty-three young adults participated in in-depth interviews in November 2020 and September 2021 as part of a study of donor conceived people in the UK that focuses on the period of young adulthood. All participants were aged between 18 and 31 years, had been conceived by sperm donation at a time of legal donor anonymity, and were mainly resident in the UK. Interviews were analysed using reflexive thematic analysis. RESULTS: Nineteen participants (58%) had used at least one direct-to-consumer DNA test, and 14 (46%) had not. Three participants (9%) had learned about their donor conception inadvertently through a direct-to-consumer DNA test. Twelve participants (36%) had matched with their donor, someone conceived using the same donor, or both. Four related themes that capture participants' perspectives and experiences of direct-to-consumer DNA testing were identified: ruptures, disclosures, webs and temporalities. CONCLUSIONS: To the authors' knowledge, this is the first study to evidence both active interest and disinterest in direct-to-consumer DNA testing among individuals who are donor conceived. The meanings ascribed to, and uses of, direct-to-consumer DNA testing vary significantly among donor conceived young adults. Findings relating to the relationship between 'informal' and 'formal' information systems, and the absence of guidance and support for those using direct-to-consumer DNA tests, should be considered carefully by practitioners, regulatory bodies and policymakers going forward.

The golden tickets: impact of preference signaling on obstetrics and gynecology residency applicants.

BACKGROUND: With the residency selection process becoming more competitive and programs receiving unprecedented numbers of applications, some specialties have introduced preference signaling in an attempt to help applicants target programs of interest. In the 2022-2023 application cycle, obstetrics and gynecology also introduced a 2-tiered system with a limited number of gold signals (n=3) and silver signals (n=15). OBJECTIVE: Given the novelty of preference signaling in the obstetrics and gynecology residency application process, this study aimed to (1) assess the effect of signals on interview offers and match and (2) discuss applicant attitudes toward this preference signaling system. STUDY DESIGN: This was a voluntary cross-sectional survey study conducted in April 2023 that was open to all fourth-year medical students who applied to an obstetrics and gynecology residency in the United States. Self-reported demographics, signaling, interview, and match data were collected. In addition, students were asked about attitudes toward signaling on a 5-point Likert scale. RESULTS: Of the 1507 applicants who entered an obstetrics and gynecology residency via match or Supplemental Offer and Acceptance Program process, 969 (64.3%) completed the survey. Moreover, an additional 22 applicants who did not match responded to the survey. More respondents used all 3 gold tokens (98.3%) and all 15 silver tokens (94.3%). The mean number of applications sent was 74.3±35.1, and the mean number of interviews received per applicant was 12.8±6.6. The interviews or token yields were 64.0%±31.5% for gold tokens, 43.8%±23.1% for silver tokens, and 9.8%±10.0% for no token. Of the survey respondents, 340/951 (35.8%) matched to a gold token program, 338/951 (35.5%) matched to a silver token program, and 244/951 (25.7%) matched to a nontoken program. Furthermore, 499/951 applicants (52.5%) reported feeling slightly positive or very positive about signaling. CONCLUSION: Most obstetrics and gynecology applicants in this survey participated in preference signaling. Gold and silver tokens were associated with high ratios of interview invitations compared with no token. However, the overall number of applications did not decrease in the 2022-2023 cycle, and only half of survey respondents reported feeling positive about the signaling process. These results can inform program directors and students about application number and strategy in upcoming cycles.

Changes and challenges in the residency application process in obstetrics and gynecology.

Faculty career advisors who guide applicants applying to obstetrics and gynecology residency programs need updated information and resources, given the constant changes and challenges to the residency application process. Initial changes included standardization of the application timeline and interview processes. More recent changes included the utilization of a standardized letter of evaluation, initiation of program signaling, second look visit guidelines, and updated sections in the Electronic Residency Application Service. Challenges in advising include the unmatched applicant and the applicant who is couples matching in the era of program signaling. Additional considerations include applying with the current status of reproductive health law restrictions and preparing for a new residency application platform. The Undergraduate Medical Education Committee of the Association of Professors of Gynecology and Obstetrics provides this updated guide of the prior 2021 resource for advisors to increase confidence in advising students, boost professional fulfillment with advising activities, and aid in satisfaction with advising resources. This guide covers the continuing challenges and future opportunities in the resident application process.

Exploring exercise, physical wellbeing and the role of physiotherapy: perspectives from people with narcolepsy.

Narcolepsy is associated with reduced quality of life and physical performance. The study aimed to explore the attitudes of people with Type 1 narcolepsy towards exercise and physical activity, their physical wellbeing, and the potential role of physiotherapy. Semi-structured interviews were conducted with 22 people with narcolepsy attending a dedicated outpatient narcolepsy clinic located in Dublin, Ireland. Transcripts were iteratively coded; a thematic analysis was undertaken, and key themes were identified. Four themes were identified: 'Barriers and Facilitators to Exercising', 'Social Concerns', 'Health Concerns' and 'Suggestions for the Role of Physiotherapy'. Future research should explore the potential role of exercise to help manage narcolepsy-related symptoms in this population.

Understanding how and why travel mode changes: analysis of longitudinal qualitative interviews.

BACKGROUND: Encouraging alternatives to the car such as walking, cycling or public transport is a key cross-sector policy priority to promote population and planetary health. Individual travel choices are shaped by individual and environmental contexts, and changes in these contexts - triggered by key events - can translate to changes in travel mode. Understanding how and why these changes happen can help uncover more generalisable findings to inform future intervention research. This study aimed to identify the mechanisms and contexts facilitating changes in travel mode. METHODS: Prospective longitudinal qualitative cohort study utilising semi-structured interviews at baseline (in 2021), three- and six-month follow up. Participants were residents in a new town in Cambridgeshire, UK, where design principles to promote walking, cycling and public transport were used at the planning stage. At each interview, we followed a topic guide asking participants about previous and current travel patterns and future intentions. All interviews were audio recorded and transcribed. Data analysis used the framework approach based on realist evaluation principles identifying the context and mechanisms described by participants as leading to travel behaviour change. RESULTS: We conducted 42 interviews with 16 participants and identified six mechanisms for changes in travel mode. These entailed increasing or reducing access, reliability and financial cost, improving convenience, increasing confidence and raising awareness. Participants described that these led to changes in travel mode in contexts where their existing travel mode had been disrupted, particularly in terms of reducing access or reliability or increasing cost, and where there were suitable alternative travel modes for their journey. Experiences of the new travel mode played a role in future travel intentions. IMPLICATIONS: Applying realist evaluation principles to identify common mechanisms for changes in travel mode has the potential to inform future intervention strategies. Future interventions using mechanisms that reduce access to, reduce reliability of, or increase the financial cost of car use may facilitate modal shift to walking, cycling and public transport when implemented in contexts where alternative travel modes are available and acceptable.

Examining the Aftermath of Virtual Interviewing on Surgical Residency Matches.

INTRODUCTION: Residency interviews have traditionally been conducted in person; however, COVID-19 forced programs to shift to virtual interviewing. This study delineated the nationwide trends observed after virtual interviewing across multiple application cycles on both surgical residency applicant competitiveness and program workload. METHODS: Publicly available National Residency Matching Program applicant and program data were retrospectively reviewed. Applicant competitiveness was assessed using a validated competitive index (# positions ranked/match rate). Interview types included in-person (2010-2020) or virtual (2021-2023), and programs were classified as general surgery (GS), surgical subspecialty (SS) - orthopedics, otolaryngology and neurosurgery, and integrated specialty (IS) - plastic, thoracic, and vascular surgery. RESULTS: When comparing in-person to virtual cohorts, the competitive index has increased in GS (0.97 ± 0.00 to 1.05 ± 0.01, P < 0.001), SS (0.97 ± 0.02 to 1.06 ± 0.01 P < 0.001), and IS (0.93 ± 0.06 to 1.12 ± 0.03, P = 0.001). United Sates Medical Licensing Examination Step scores and research experiences increased over time in GS and SS (P < 0.05). Program workload, represented by number of applications received per program increased in GS, IS, and SS (P < 0.05), as well as the number of interviews conducted in GS and SS (P < 0.05). Importantly, match rate remained stable in GS and IS, with a decrease in SS (0.69 ± 0.03 to 0.63 ± 0.02, P = 0.04). CONCLUSIONS: The residency application process has been irrevocably changed due to COVID-19. The rise in applicant volume and competitiveness places unique strains on applicants and programs. Additional modifications such as signaling and ACGME guidance are needed to help alleviate strain and ensure that residents and programs alike find their best fit.

Understanding General Surgery Recruitment and Attrition During the COVID-Era: A 1-Year Follow-Up Study.

INTRODUCTION: The COVID-19 pandemic resulted in modifications to resident selection. The success of these new recruitment strategies as well as the impact on trainee attrition and competency is unknown. We previously evaluated how selection of general surgery applicants changed early in the pandemic. Here we supplement that work by reporting further modifications to the recruitment process and the perceived impact on resident attrition and competency. METHODS: An anonymous cross-sectional survey sent via the Association of Program Directors in Surgery listserv in June 2022 to programs directors (PDs) at Accreditation Council for Graduate Medical Education accredited general surgery programs. Surveys contained demographic questions, 5-point Likert scale questions evaluating factors related to recruitment and match process, and postgraduate year 1 performance. RESULTS: 60 PDs responded to the survey. PDs continue to value the same post-COVID factors related to determining a resident's commitment to surgery but began to shift back to nonvirtual based strategies to recruit applicants in this new interview cycle. PD commentary frequently noted desire to return to in-person interviewing. 5.4% of postgraduate year 1s comprising this first class of residents who underwent virtual-only interviews and rotations did not reach Accreditation Council for Graduate Medical Education level 1 milestones, similar to prior years. The attrition rate amongst this class increased from 1.3% to 2.7%. CONCLUSIONS: The attrition rate for postgraduate year 1 categorical general surgery residents has increased since the onset of the pandemic. The recruitment strategies adopted early in the pandemic have not maintained their initial perceived impact.

Centering Amah Mutsun voices in the analysis of a culturally important, fire-managed coastal grassland.

Indigenous communities throughout California, USA, are increasingly advocating for and practicing cultural fire stewardship, leading to a host of social, cultural, and ecological benefits. Simultaneously, state agencies are recognizing the importance of controlled burning and cultural fire as a means of reducing the risk of severe wildfire while benefiting fire-adapted ecosystems. However, much of the current research on the impacts of controlled burning ignores the cultural importance of these ecosystems, and risks further marginalizing Indigenous knowledge systems. Our work adds a critical Indigenous perspective to the study of controlled burning in California's unique coastal grasslands, one of the most biodiverse and endangered ecosystems in the country. In this study, we partnered with the Amah Mutsun Tribal Band to investigate how the abundance and occurrence of shrubs, cultural plants, and invasive plants differed among three adjacent coastal grasslands with varying fire histories. These three sites are emblematic of the state's diverging approaches to grassland management: fire suppression, fire suppression followed by wildfire, and an exceedingly rare example of a grassland that has been repeatedly burned approximately every 2 years for more than 30 years. We found that Danthonia californica was significantly more abundant on the burned sites, whereas all included shrub species (Baccharis pilularis, Frangula californica, and Rubus ursinus) were significantly more abundant on the site with no recorded fire, results that have important implications for future cultural revitalization efforts and the loss of coastal grasslands to shrub encroachment. In addition to conducting a culturally relevant vegetation survey, we used Sentinel-2 satellite imagery to compare the relative severities of the two most recent fire events within the study area. Critically, we used interviews with Amah Mutsun tribal members to contextualize the results of our vegetation survey and remote sensing analysis, and to investigate how cultural burning contrasts from typical Western fire management approaches in this region. Our study is a novel example of how interviews, field data, and satellite imagery can be combined to gain a deeper ecological and cultural understanding of fire in California's endangered coastal grasslands.

Experiences of families post treatment for childhood brain tumours during medical clinic consultations regarding health-related quality of life, unmet needs and communication barriers: A qualitative exploration.

BACKGROUND: Many studies highlight poor health-related quality of life (HRQoL) in children treated for brain tumours and their parents. However, little is known about the extent to which their informational, healthcare and communication needs regarding HRQoL are met during medical outpatient consultations. AIM: To explore the experiences of families regarding communication with physicians about HRQoL issues during consultations after treatment for childhood brain tumours. METHODS: Interviews were conducted with 18 families of children and adolescents aged 8-17 years after completion of brain tumour treatment. Participants had completed treatment within the last 5 years and were receiving regular outpatient follow-up care. Thematic analysis was undertaken using the Framework Method. RESULTS: Five main themes were identified: (i) unmet emotional and mental health needs; (ii) double protection; (iii) unmet information needs; (iv) communication barriers within consultations; and (v) finding a new normal. CONCLUSION: There was a need to improve communication between clinicians and these families, improve information provision, and overcome barriers to conversing with children within these outpatient consultations. Children and their parents should be supported to voice their current needs and concerns regarding their HRQoL. These findings will inform further development of the UK version of the 'KLIK' patient- and parent-reported outcome (PROM) portal.

Symptoms at stroke onset as described by patients: a qualitative study.

BACKGROUND: Stroke is a common and severe disease that requires prompt care. Symptom expressions as one-sided weakness and speech difficulties are common and included in public stroke campaigns. For some patients stroke can present with subtle and less common symptoms, difficult to interpret. The symptom severity assessed by the National Institutes of Health Stroke Scale has decreased, and symptoms at onset may have changed. Therefore, we aimed to investigate how patients describe their symptoms at the onset of a first-time stroke. METHODS: The study used a qualitative descriptive design and conventional content analysis. Data were collected through recorded interviews with 27 patients aged 18 years and older hospitalised with a first-time stroke between October 2018 and April 2020. Data were analysed on a manifest level. RESULTS: Symptoms at stroke onset were presented in two themes: Altered Reality and Discomfort and Changed Body Functions and described in five categories. Various types of symptoms were found. All symptoms were perceived as sudden, persistent, and never experienced before and this appear as a "red thread" in the result. Regardless of symptom expressions, no specific symptom was described as more severe than another. CONCLUSIONS: Stroke symptoms were described with a variety of expressions. Many described complex symptoms not typical of stroke, which can make it difficult to recognise the symptoms as a stroke and delay medical care. Public stroke campaigns should emphasize the importance of seeking medical care at the slightest suspicion of stroke and could be designed to help achieve this.

An Exploration of the Peri-Diagnostic Experiences of Lesbian, Gay and Bisexual People With Dementia Using the Candidacy Framework.

OBJECTIVES: How dementia affects lesbian, gay, bisexual, trans, queer people or those with other minoritised sexual/gender identities (LGBTQ+) is not well understood. Furthermore, existing research often excludes the voices of LGBTQ+ people living with dementia and focuses instead on their care partners. This study addresses this evidence gap by drawing on the ESRC/NIHR funded DETERMIND cohort, consisting of 940 newly diagnosed people with dementia, to explore the peri-diagnostic experiences of people living with dementia who identify as LGBTQ+. METHODS: We recruited five people (who identified as lesbian, gay or bisexual [LGB]) and completed semi-structured interviews with them and their partner caregivers (n = 3) discussing their experiences of (1) engaging with dementia health care services, (2) receiving a dementia diagnosis, and (3) the support they were offered after diagnosis. Interviews were shaped by the Candidacy Framework, a theoretical model for understanding accessibility of health services, and an inductive thematic analysis was employed to develop common themes. FINDINGS: Participants did not routinely disclose their LGBTQ+ identities to health service professionals, despite feeling this was an essential aspect of who they are. They relied on their resilience of overcoming previous experiences of lifetime discrimination to navigate complicated dementia care systems. The importance of 'chosen families' as informal support networks for LGBTQ+ people living with dementia was highlighted, particularly given the lack of formal care services they felt comfortable accessing. All participants were concerned about their future care needs and whether they would receive home-based or community-based support that respected their LGBTQ+ identities. CONCLUSIONS: This study adds to the limited evidence base that can be used to inform future research, policy and practice seeking to address inequalities across the dementia care pathway. We only interviewed people who identified as LGB so generalizability to the whole LGBTQ+ population is limited, however our data suggest dementia health care professionals should encourage and support disclosures of LGBTQ+ identities so that inclusive care and support planning can be provided to LGBTQ+ people at every stage of dementia.

Development and pilot testing of a patient-reported outcome measure to assess symptoms of parastomal hernia.

AIM: The aim was to develop and pilot a patient-reported outcome measure (PROM) to assess symptoms of parastomal hernia (PSH). METHODS: Standard questionnaire development was undertaken (phases 1-3). An initial list of questionnaire domains was identified from validated colorectal cancer PROMs and from semi-structured interviews with patients with a PSH and health professionals (phase 1). Domains were operationalized into items in a provisional questionnaire, and 'think-aloud' patient interviews explored face validity and acceptability (phase 2). The updated questionnaire was piloted in patients with a stoma who had undergone colorectal surgery and had a computed tomography scan available for review. Patient-reported symptoms were examined in relation to PSH (phase 3). Three sources determined PSH presence: (i) data about PSH presence recorded in hospital notes, (ii) independent expert review of the computed tomography scan and (iii) patient report of being informed of a PSH by a health professional. RESULTS: For phase 1, 169 and 127 domains were identified from 70 PROMs and 29 interviews respectively. In phase 2, 14 domains specific to PSH were identified and operationalized into questionnaire items. Think-aloud interviews led to three minor modifications. In phase 3, 44 completed questionnaires were obtained. Missing data were few: 5/660 items. PSH symptom scores associated with PSH presence varied between different data sources. The scale with the most consistent differences between PSH presence and absence and all data sources was the stoma appearance scale. CONCLUSION: A PROM to examine the symptoms of PSH has been developed from the literature and views of key informants. Although preliminary testing shows it to be understandable and acceptable it is uncertain if it is sensitive to PSH-specific symptoms and further psychometric testing is needed.