Patient Journey Research Articles

Hereditary angioedema in Spain: medical care and patient journey

BackgroundHereditary angioedema due to C1 inhibitor deficiency (HAE-C1INH) is a genetic rare disease characterized by recurrent, transient and unpredictable episodes of cold, non-pruriginous oedema without associated urticaria. The characteristics of the disease have a considerable impact on the quality of life of patients. The aim of this study was to increase understanding of the patient journey of HAE in Spain.MethodsA multidisciplinary committee of 16 HAE experts (allergy, immunology, emergency department, hospital pharmacy and nursing) and 3 representatives of the Spanish Hereditary Angioedema Patient Association (AEDAF) who were patients or caregivers participated in the study. A review of the publications on HAE treatment was performed. Semi-structured interviews were performed to HAE experts, patients, or caregivers. Three meetings with the experts, patients and caregivers were held to share, discuss, and validate data obtained from literature and interviews and to build the model.ResultsThroughout the project, the patient journey has been drawn up, dividing it into the stages of pre-diagnosis, diagnosis and treatment/follow-up. Some areas for improvement have been identified. Firstly, there is a need to enhance awareness and training on HAE among healthcare professionals, with a particular emphasis on primary care and emergency department personnel. Secondly, efforts should be made to minimize patient referral times to allergy/immunology specialists, ensuring timely access to appropriate care. Thirdly, it is crucial to encourage the study of the relatives of diagnosed patients to early identify potential cases. Fourthly, equitable access to self-administered treatments should be ensured, facilitated by systems that enable medication delivery at home and proper education and training for patients. Equitable access to long-term prophylactic treatment should also be prioritized for all patients in need. To standardize HAE management, the development of consensus guidelines that reduce variability in clinical practice is essential. Lastly, promoting research studies to enhance knowledge of the disease and align its treatment with new developments in the healthcare field should be encouraged.ConclusionsThe knowledge of the patient journey in HAE allowed us to identify improvement areas with the final aim to optimize the disease management.

Patient-reported outcomes in HSCT for autoimmune diseases: Considerations on behalf of the EBMT ADWP, PAC, and Nurses Group

BackgroundOver the last three decades, hematopoietic stem cell transplantation (HSCT) has been successfully used to treat severe and refractory autoimmune diseases (AIDs). A multidisciplinary appraisal of potential benefits and risks by disease and transplant specialists is essential to determine individual suitability for HSCT. ObjectivesPatient-reported outcomes (PROs) and Health-related Quality of Life (HRQoL) instruments can capture the unique patient perspective on disease burden and impact of treatment. MethodsHerein, we describe the basis and complexity of endpoints measuring patient-reported perceptions of efficacy and tolerability used in clinical practice and trials for patients with ADs undergoing autologous HSCT. ResultsPatient-reported outcome measures (PROMs) and patient-reported experience measures (PREM) are key tools to evaluate the impact and extent of disease burden for patients affected by ADs. For formal scientific assessment, it is essential that validated general instruments are used, while adaptations have resulted in disease specific instruments that may help guiding tailored interventions. An additional approach relates to qualitative evaluations, from carefully structured qualitative research to informal narratives, as patient stories. The patients’ subjectively reported responses to HSCT may be influenced by their pre-procedure expectations and investment in HSCT journey. ConclusionsThe complexity of AIDs advocates for individualized and multidisciplinary approach to impact positively the patient journey. PROs and HRQoL need to be collected using validated instruments in clinical practice and trials to enable robustness of data, ensure the impact of the intervention is comprehensively assessed, addressing the main questions and needs of the involved stakeholders.

Single German centre experience with patient journey and care-relevant needs in amyloidosis: The German AMY-NEEDS research and care program.

Amyloidosis is a rare multi-system disorder associated with frequently delayed diagnosis, enormous disease burden and psychosocial distress. Systematic assessment of needs was performed by a subtype-spanning questionnaire-based survey within the AMY-NEEDS research and care program. 118 patients with proven amyloidosis (62.7% ATTR, 22.0% AL, 15.3% other forms) were included in August 2020 until February 2021 (mean age 71.2 ±11.3 years; 30% women). The median diagnostic delay between onset of symptoms and diagnosis was 9.0 (range: 2.5; 33.0) months. Local health care providers (HCPs) play a central role on the way to diagnosis. Diagnosis itself typically requires a clinical but not necessarily a university setting. In the treatment phase, the focus moves to the amyloidosis centre as primary contact and coordinator, with general practitioners (GPs) acting predominantly as a contact point in crisis and link to additional services. About half of patients reported impaired quality of life and one third suffering from anxiety and depressed mood, respectively. The majority of patients talk about their concerns with close caregivers and local HCPs. Advance care planning is a relevant, yet insufficiently met need. The journey of patients with amyloidotic disease, their contact partners and needs at different stages were characterized in detail within the German health care system. An amyloidosis-specific care concept has to master the multitude of interfaces connecting the numerous treatment providers involved with the amyloidosis centre and GPs as key players. Telemedical approaches could be a promising and well-accepted option allowing optimal coordination and communication.

Improving Accessibility to Patients with Interstitial Lung Disease (ILD): Barriers to Early Diagnosis and Timely Treatment in Latin America.

Delayed initiation of effective antifibrotic therapy in patients with interstitial lung diseases (ILD) may influence the progression and outcome of the disease. This study analyzes the differences in the journey of patients with ILD in the Brazilian and Mexican health systems. An evaluative study was conducted in reference centers for interstitial lung diseases in Brazil and Mexico with a panel of four specialists. The patient's journey in both countries begins when the patient seeks medical care after observing a chronic respiratory symptom. In both countries, due to diagnostic complexity, these patients arrive at ILD referral centers at an advanced stage of the disease. Once diagnosis is established, the treatment onset differs between Mexico and Brazil. In Brazil, access to antifibrotic drugs through the public health system has been a significant challenge, and their cost makes them unaffordable for most people. This situation forces medical specialists to provide only supportive care to patients until these drugs can be accessed. In Mexico, antifibrotics have been available in health sectors since 2018. Brazil and Mexico have several similarities regarding the initial journey of the patient due to diagnosis difficulties. Still, the outcome tends to be different due to a difference in access to treatment with antifibrotics. For this reason, advancing health policies that ensure proper treatment for patients with ILD is crucial for the sustainability and reliability of the health system.

Clinical journey for patients with aortic regurgitation: A retrospective observational study from a multicenter database.

Data using real-world assessments of aortic regurgitation (AR) severity to identify rates of Heart Valve Team evaluation and aortic valve replacement (AVR), as well as mortality among untreated patients, are lacking. The present study assessed these trends in care and outcomes for real-world patients with documented AR. Using a deidentified data set (January 2018-March 2023) representing 1,002,853 patients >18 years of age from 25 US institutions participating in the egnite Database (egnite, Inc.) with appropriate permissions, patients were classified by AR severity in echocardiographic reports. Rates of evaluation by the Heart Valve Team, AVR, and all-cause mortality without AVR were examined using Kaplan-Meier estimates and compared using the log-rank test. Within the data set, 845,113 patients had AR severity documented. For moderate-to-severe or severe AR, respectively, 2-year rates (95% confidence interval) of evaluation by the Heart Valve Team (43.5% [41.7%-45.3%] and 65.4% [63.3%-67.4%]) and AVR (19.4% [17.6%-21.1%] and 46.5% [44.2%-48.8%]) were low. Mortality at 2 years without AVR increased with greater AR severity, up to 20.7% for severe AR (p < 0.001). In exploratory analyses, 2-year mortality for untreated patients with left ventricular end-systolic dimension index > 25 mm/m2 was similar for moderate (34.3% [29.2%-39.1%]) and severe (37.2% [24.9%-47.5%]) AR. Moderate or greater AR is associated with poor clinical outcomes among untreated patients at 2 years. Rates of Heart Valve Team evaluation and AVR were low for those with moderate or greater AR, suggesting that earlier referral to the Heart Valve Team could be beneficial.

Abstract A017: Patient-reported experience related to aspects of quality of life after cystectomy from an exploratory focus group

Abstract Purpose: These exploratory focus groups examined patient experiences after having a cystectomy following bladder cancer. Methods: US individuals aged &amp;gt;50 years with self-reported diagnosis of non-muscle invasive bladder cancer (NMIBC) or muscle invasive bladder cancer (MIBC) who had undergone partial or radical cystectomy were recruited through a Patient Engagement Research Council program and invited to participate in an exploratory focus group (October 2022). Patients completed a prework survey on initial diagnosis, treatments, and how aspects of their life changed over time from pre-diagnosis, around the time of decision to undergo cystectomy, 90 days after cystectomy, and at present day. Patients attended gender-specific focus group sessions to discuss their patient journey, support needs, and how having a cystectomy affected their lives. Discussions were facilitated by a gender-matched moderator using a semi-structured discussion guide. Patients provided written informed consent and were compensated for their time. Key themes were identified by coding of audio transcripts and direct observations via the qualitative research analysis software MAXQDA. Results: Patients were six White adults (female n=3, male n=3, median age 68 years) with NMIBC (n=2) or MIBC (n=4) who underwent radical cystectomy between 2000 and 2020. Patients reported that bladder-sparing approaches were rarely introduced or discussed by their care team during their diagnostic journey, instead identifying disease eradication and pain improvement as primary drivers for choosing cystectomy. In the first 90 days post-surgery, patients reported that cystectomy negatively affected their ability to perform daily activities, mental health, and physical intimacy while adapting to a “new normal,” citing challenges with urinary diversion routes. Female patients cited a general lack of female-centric support (e.g. feminine hygiene and care education) as their support groups were mostly comprised of male patients focusing on male-centric issues (e.g., erectile dysfunction). In the present day, patients reported lower sex drive, satisfaction with body image, and physical intimacy. Patients called for more privacy consideration during medical examinations, better ostomy care support, increased awareness among healthcare professionals about the struggles patients face throughout their cystectomy journey, and improved education about available treatment options (including bladder preservation) and possible ramifications of cystectomy on all aspects of life (including sexual health and female-centric needs). Conclusions: Cystectomy can negatively affect patients’ lives, affecting their ability to participate in daily activities, mental health, and physical intimacy among those with NMIBC and MIBC. Patients expressed the need for holistic, long-term support (including awareness of treatment options, emotional support, and ostomy care) before, during, and after cystectomy. Citation Format: Nida Imran, Wesley Peters, Karen Fixler, Priyanka Madireddi, Lisa M. Shea, Andrea Ireland. Patient-reported experience related to aspects of quality of life after cystectomy from an exploratory focus group [abstract]. In: Proceedings of the AACR Special Conference on Bladder Cancer: Transforming the Field; 2024 May 17-20; Charlotte, NC. Philadelphia (PA): AACR; Clin Cancer Res 2024;30(10_Suppl):Abstract nr A017.

Patterns of Service Utilization across the Full Continuum of Care: Using Patient Journeys to Assess Disparities in Access to Health Services

Healthcare organizations have a contractual obligation to the public to address population-level inequities to health services access and shed light on them. Various studies have focused on achieving equitable access to healthcare services for vulnerable patients. However, these studies do not provide a nuanced perspective based on the local reality across the full continuum of care. In previous work, graph topology was used to provide visual depictions of the dynamics of patients’ movement across a complex healthcare system. Using patients’ encounters data represented as a graph, this study expands on previous work and proposes a methodology to identify and quantify cohort-specific disparities in accessing healthcare services across the continuum of care. The result has demonstrated that a more nuanced approach to assessing access-to-care disparity is doable using patients’ patterns of service utilization from a longitudinal cross-continuum healthcare dataset. The proposed method can be used as part of a toolkit to support healthcare organizations that wish to structure their services to provide better care to their vulnerable populations based on the local realities. This provides a first step in addressing inequities for vulnerable patients in accessing healthcare services. However, additional steps need to be considered to fully address these inequities.

Challenges Nurses Face in Providing Care for Patients with Juvenile Idiopathic Arthritis

Abstract Objectives: This study aimed at identifying challenges nurses face in caring for patients with juvenile idiopathic arthritis (JIA) in Japan. Methods: Nurses certified by the Japan Rheumatism Foundation were asked to describe their challenges with caring for JIA patients. Data was analyzed using qualitative content analysis. Results: Responses were collected from 89 participants. 58 issues were identified from 40 participants with experience caring for JIA patients. Sixteen categories emerged, grouped into five challenges: communication, understanding, expertise, system, and collaboration. Care for JIA patients included different challenges from adult patients with rheumatoid arthritis, such as complicated patient-parent relationships, inadequate patient independence and insufficient patient information. Moreover, 76 issues from 49 participants with no experience were identified. Seven categories emerged, grouped into two challenges: expertise and opportunity. Issues included in expertise between both groups were similar. Even with no experience caring for JIA patients, nurses recognized the importance of acquiring knowledge. Conclusion: This is the first study in Japan regarding the difficulties nurses face in caring for JIA patients. Multidisciplinary team care and a comprehensive understanding of the patient journey, including relationships with guardians, acquaintances, and healthcare providers, is crucial to improve treatment outcome and overall patient quality of life.

Evaluating a Novel AI Tool for Automated Measurement of the Aortic Root and Valve in Cardiac Magnetic Resonance Imaging.

Objective Evaluating an artificial intelligence (AI) tool (AIATELLA, version 1.0; AIATELLA Oy, Helsinki, Finland) in interpreting cardiac magnetic resonance (CMR) imaging to produce measurements of the aortic root and valveby comparison ofaccuracy and efficiencywith that of three National Health Service (NHS) cardiologists. Methods AI-derived aortic root and valve measurements were recorded alongside manual measurements from three experienced NHS consultant cardiologists (CCs) over three separate sites in the northeast part of the United Kingdom. The study utilised a comprehensive dataset of CMR images, with the intraclass correlation coefficient (ICC) being the primary measure of concordance between the AI and the cardiologist assessments. Patient imaging was anonymised and blinded at the point of transfer to a secure data server. Results The study demonstrates a high level of concordance between AI assessment of the aortic root and valve with NHS cardiologists (ICC of 0.98). Notably, the AI delivered results in 2.6 seconds (+/- 0.532) compared to a mean of 334.5 seconds (+/- 61.9) by the cardiologists, a statistically significant improvement in efficiency without compromising accuracy. Conclusion AI's accuracy and speed of analysis suggest that it could be a valuable tool in cardiac diagnostics, addressing the challenges of time-consuming and variable clinician-based assessments. This research reinforces AI's role in optimising the patient journey and improving the efficiency of the diagnostic pathway.

Abstract PO3-16-06: Perceptions and experiences of patients and healthcare providers on genetic testing and treatment of early breast cancer: qualitative findings

Abstract Background: Olaparib is approved as adjuvant therapy for high-risk HER2-negative early breast cancer (eBC) patients with germline BRCA mutations (BRCAm). Understanding patients’ preferences for genetic testing and treatment in the context of shared decision-making is needed to support optimal care in eBC. This study elicited the perspectives of patients with eBC and healthcare providers (HCP) treating eBC regarding treatment decision-making, and drivers and barriers to BRCA testing. Methods: Semi-structured interviews were conducted in the United States from Jan-Feb 2023 with women (n=12) diagnosed with eBC from 2017-2021. Community and academic oncologists treating eBC (n=12) and genetic counselors (GCs; n=8) were also interviewed. Patients who were tested (n=7) and untested (n=5) for BRCAm were included. A content and thematic analysis was performed which identified key factors from the data; these analyses provided both a range and common responses that may influence BRCA testing and treatment decisions. Results: BRCA-tested patients considered testing beneficial. In choosing to receive testing, &amp;gt;50% of patients reported HCP recommendation (n=7) and the opportunity to have “all of the information” about their eBC (n=7) as strong influencers. Patients declined genetic testing noting fear around negative impact to their insurance coverage (n=2) or mental health (n=3), or if they did not have family who would benefit from the information. Cost did not strongly influence testing choice. In choosing a treatment, patients sought to maintain their quality of life (QoL) with fewer side effects while minimizing chance of recurrence. They expressed the dual goals of normalcy during treatment, including curtailing side effects that impact QoL, and returning to normalcy after treatment (n=7). Patients were willing to accept unpleasant side effects to have a more effective treatment if those side effects do not severely impact their QoL and the treatment is highly effective (n=9). Side effects that may lead to hospitalization were the least accepted as they disrupt normalcy. HCPs reported that patients eagerly accept testing and face minimal familial or access barriers to testing. HCPs observed that among their non-Medicare patients, testing is usually covered by insurance with minimal out-of-pocket costs, thus alleviating financial constraints observed in previous years. HCPs believe BRCA testing is driven by updated hereditary cancer testing guidelines (e.g., NCCN), lower testing costs, closer collaborations of physicians and genetic counselors, and greater awareness among patients. HCPs reported that they embrace patient-led decision-making in eBC, especially as it relates to patients with BRCAm considering additional prophylactic surgery, and GCs further emphasized patient autonomy. Oncologists mentioned that they discuss risk status starting at diagnosis and these conversations evolve over the patient journey as new information emerges. In HR+ eBC, oncologists offered most patients with BRCAm adjuvant olaparib, which they perceive as well tolerated. In triple-negative eBC, oncologists opted for neoadjuvant Keytruda regimen prior to considering adjuvant olaparib for gBRCAm patients. Conclusions: Patients value information that empowers them to achieve their goals of normalcy and remission that can be achieved by addressing QoL, side effects, and patients' goals of living “normally”. Though prior research highlighted insurance coverage and costs as significant barriers to BRCA testing, results from this study suggest that cost was not a major factor in testing decisions. Prior barriers to testing access have been mitigated making it more available and affordable than in the past, which could be broadly communicated to patients and HCPs to minimize misperception. Citation Format: Jagadeswara Earla, Emily Mulvihill, Josh Lankin, Lauren Howell, Alex Kissling, Weiyan Li, Jaime Mejia. Perceptions and experiences of patients and healthcare providers on genetic testing and treatment of early breast cancer: qualitative findings [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO3-16-06.

Assessing current handover practices in surgery: A survey of non-consultant hospital doctors in Ireland

BackgroundHandovers of care are potentially hazardous moments in the patient journey and can lead to harm if conducted poorly. Through a national survey of surgical doctors in Ireland, this paper assesses contemporary surgical handover practices and evaluates barriers and facilitators of effective handover. MethodsAfter ethical approval and pre-testing with a representative sample, a cross-sectional, online survey was distributed to non-consultant hospital doctors (NCHDs) working in the Republic of Ireland. A mixed-methods approach was used, combining data using triangulation design. Main findingsA total of 201 responses were received (18.5%). Most participants were senior house officers or senior registrars (49.7% and 37.3%). Most people (85.1%) reported that information received during handover was missing or incorrect at least some of the time. One-third of respondents reported that a near-miss had occurred as a result of handover within the past three months, and handover-related errors resulted in minor (16.9%), moderate (4.9%), or major (1.5%) harm. Only 11.4% had received any formal training. Reported barriers to handover included negative attitudes, a lack of institutional support, and competing clinical activities. Facilitators included process standardisation, improved access to resources, and staff engagement. ConclusionsSurgical NCHDs working in Irish hospitals reported poor compliance with international best practice for handover and identified potential harms. Process standardisation, appropriate staff training, and the provision of necessary handover-related resources is required at a national level to address this significant patient safety concern.

Developing an integrated nurse and physiotherapist-led bladder, bowel and pelvic health team.

A service redesign in 2019 led to the formation of an integrated team of nurses and physiotherapists working together to form a bladder, bowel and pelvic health team across two hospitals and the community in Lewisham and Greenwich NHS Trust. The last few years have had their challenges, but the team is now very successful and has won awards for the integration and achievements, particularly in the redesign of the containment product service. Integrating two professional groups has led to excellent team-work and smoother patient journeys.

3145: The role of metastasis directed therapy in the oligometastic prostate cancer patient journey

3145: The role of metastasis directed therapy in the oligometastic prostate cancer patient journey

6276542 Identifying latent risk: Use of large-scale multiprofessional in-situ simulation to evaluate safety across the intrapartum patient journey

6276542 Identifying latent risk: Use of large-scale multiprofessional in-situ simulation to evaluate safety across the intrapartum patient journey

Emotional Journey of Breast Cancer Patients: A Nominal Group Technique Analysis

This study explores the emotional acceptance process of breast cancer patients in Malaysia using the Nominal Group Technique (NGT) to understand and support patients' emotional journeys from diagnosis through treatment. The study categorizes and rates five stages of emotional acceptance: behavioral acceptance, non-acceptance, willingness-to-accept, passive acceptance, and transcendence-of-acceptance, using a sample of 11 breast cancer survivors. The results show a non-linear route to emotional acceptance, with the participants reaching the greatest consensus at the transcendence-of-acceptance level. In addition to potentially guiding more effective support treatments. This research provides a comprehensive knowledge of emotional acceptance in breast cancer patients.

Difficulties and Disparities in Colorectal Cancer End-of-Life Care: A Patient's Story

AbstractPatients with advanced colorectal cancer nearing the end of life require a multidisciplinary approach to address the unique challenges they face. Using a case vignette, we outline the various stages of a patient's journey with advanced rectal cancer and the common obstacles to their care as they interface with the medical system. We highlight how Black persons might be vulnerable to differences in screening, treatment, procedural interventions, end-of-life care, and health care decision-making. The article also addresses how health inequities and barriers relating to concordant treatment goals can impact the relationship between patient and surgeon. This vignette illustrates the importance of ensuring a team approach to treatment and the value of early involvement of palliative medicine for patients with advanced colorectal cancer.

The journey of lung cancer patients from symptoms to diagnosis in Greece. A mixed methods approach

The early diagnosis of lung cancer improves the probability of successful treatment. However, patients and physicians face several difficulties that can considerably delay the diagnostic process. A mixed-methods study that would follow the patient’s journey throughout the diagnostic process could alleviate these difficulties. This study aimed to (a) track the patients’ journey from the onset of symptoms until diagnosis and, (b) explore the patients’ perspective of the journey until diagnosis, on the largest island of Greece. A convergent mixed-methods study was conducted with 94 patients with lung cancer. Patients completed a self-report questionnaire and were interviewed about their symptoms and journey through the healthcare system before their diagnosis. Our findings revealed several problems and delays in the diagnostic process. Both quantitative and qualitative data showed that patients did not recognize their symptoms and sought medical advice in time because they overlooked or attributed their symptoms to ‘simpler’/‘more common’ causes. Furthermore, most patients were diagnosed 1–3 months after their first visit to a physician for their symptoms. Qualitative data analysis revealed three broad categories of problems that delayed diagnosis: (1) physician missteps, (2) administrative problems, and (3) the effect of the Covid-19 pandemic. This study found that major issues and delays prolong the diagnostic process for lung cancer. Therefore, optimization of diagnostic processes at each level of healthcare and interspecialty cooperation programs are needed. Furthermore, population-based interventions and patient education can help lung cancer patients be diagnosed early and improve their quality of life and disease outcomes.

Helping Patients Navigate the Emergency Department: Assessing the Utility of a Poster Illustrating the Patient Journey

Helping Patients Navigate the Emergency Department: Assessing the Utility of a Poster Illustrating the Patient Journey

P074 Diagnostic Journeys of Patients with Hypophosphatasia

Abstract Background/Aims Hypophosphatasia (HPP) is an ultra-rare genetic disorder characterised by low activity of tissue non-specific alkaline phosphatase (TNAP). Due to heterogeneity of clinical presentation and lack of definitive biochemical testing, misdiagnosis and diagnostic delay are common. Methods We used information reported by HPP patients to the Rare and Undiagnosed Diseases Study (RUDY) online registry (www.rudystudy.org). We included patients with a self-reported diagnosis of HPP and information on at least one of our outcomes. We described their diagnostic journey, including diagnostic delays, initial symptoms, incorrect diagnoses and healthcare professionals seen. Results 16 participants with a self-reported diagnosis of HPP were included in the analysis with 14/16 female. Of those reporting the date of initial symptom onset, 9/14 participants had symptom onset before the age of 18, whereas five had symptom onset in adulthood. The median time from symptom onset to HPP final diagnosis was 26.5 years (N = 8, IQR 11.2 to 34.6). From the first GP visit related HPP to final diagnosis the median time was 9.5 years (N = 6, IQR 6.2 to 11.1), and from the first hospital visit related to HPP, the median time to final diagnosis was 3.9 years (N = 10, IQR 0.8 to 10.5). Among participants reporting initial symptoms (N = 13), 16 categories of initial symptom were reported, with a median of two initial symptom categories per participant (IQR 1 to 2). The most prevalent initial symptom was pain (10/13, 77%). Of these 10 participants, four had lower limb pain, one had upper limb pain, one had back pain, and five had pain of unspecified location. Skeletal deformity at birth, dental manifestations, joint swelling, and infantile feeding problems were each present in 2/13 participants (15%). Among participants reporting whether they had received other diagnoses prior to that of HPP (N = 13), nine participants (75%) received at least one other diagnosis, with diagnoses of 10 different conditions reported across the cohort. The most common other diagnosis was fibromyalgia (4/13, 31%), followed by hypermobility (2/13, 15%). 21 different types of healthcare professionals were seen prior to final diagnosis. General Practitioners were the most commonly consulted (9/14, 64%). This was followed by allied health professionals (8/14, 57%). Of the eight participants seeing allied health professionals, all eight saw physiotherapists, and 4 (29% of total) also saw at least one other allied health professional. Other types of healthcare professional seen by multiple responders included orthopaedic surgeons (5/14, 36%), rheumatologists (5/14, 36%), geneticists (4/14, 29%), endocrinologists (3/14, 21%), metabolic specialists (3/14, 21%) and dentists (2/14, 14%). Conclusion Patients typically present with a cluster of symptoms, often including pain, and are often seen by general practitioners and physiotherapists before diagnosis. Increasing awareness of HPP in these professions may improve early recognition of the disease. Disclosure D. Marsden: None. R. Ridley: None.

General practice management after transition events: protocol for an experience-based co-design study.

Discharge from hospital is a critical part of the patient journey, particularly for older patients with multimorbidity and polypharmacy. General practice has a key role in managing the post-discharge course of patients. A communication intervention for use in general practice in the immediate post-discharge period has great potential to improve shared decision making, enhancing patient experiences of post-discharge care. General Practice Management After Transition Events (GP-MATE) aims to produce a tool for older patients and their carers (GP-MATE), which will assist better communication with their general practice about their care after discharge, thereby improving patient safety outcomes. Experience-based co-design (EBCD) study involving general practices across the West Midlands. A slightly modified approach to EBCD will be followed to create GP-MATE. A focused ethnography undertaken at general practices will provide an understanding of practices' systems for post-discharge management of older patients. Semi-structured video interviews with recently discharged older patients or their carers will be edited into a trigger film. Finally, co-design workshops with older people, carers, and healthcare staff working in general practices will take place with participants from three regions across England. EBCD will be used to take a patient-centric approach towards creating GP-MATE; patients' and carers' priorities will be directly reflected within the tool. GP-MATE will be a low-cost intervention that improves health literacy, empowering patients to fill the emerging gap in continuity in the post-discharge period and enhancing patient experiences of post-discharge care.