Experiences of patients with hard-to-heal wounds: insights from a pilot survey.

OBJECTIVE: To learn about the experiences of people who seek treatment for hard-to-heal wounds, we distributed a nationwide pilot survey, asking questions about the nature of their wound, how it shaped their daily lives, pathways to receiving care and experiences with treatment. The long-term objective is to quantify the journey of patients with hard-to-heal wounds to identify ideal intervention points that will lead to the best outcomes. This article summarises the findings, implications, limitations and suggestions for future research. METHOD: Qualitative data were self-reported from patients with hard-to-heal wounds (open for ≥4 weeks) in a pilot chatbot survey, (Wound Expert Survey (WES)) provided online in the US on Meta platforms (Facebook and Instagram) between 2021 and 2022. RESULTS: The US national pilot survey attracted responses from 780 patients, 27 of whom provided a video testimonial. Some 57% of patients delayed treatment because they believed their wound would heal on its own, and only 4% saw a wound care specialist. Respondents reported the cost of care as the most frequent reason for not following all of a doctor's treatment recommendations. Queries regarding quality of life (QoL) revealed that more than half (65%) said they have negative thoughts associated with their wound at least every few days. Some 19% of respondents said their wound had an odour and, of them, 34% said odour had a major or severe negative impact on their self-confidence. Economically, nearly one-quarter of respondents said having a wound led to a drop in their total household income and 17% said their wound led to a change in their employment status. CONCLUSION: A national pilot survey of patients with hard-to-heal wounds revealed that many delay seeking professional assistance and only a small minority see a wound care specialist. Experiencing an ulcer, even for a few months, can have significant negative effects on a patient's QoL. Patients frequently had negative thoughts associated with their wound, and odour compounded these negative effects, leading to major or severe negative impacts on self-confidence. Households experienced a decline in income, due to both the direct reduction or loss of patient employment and the additional time spent by family members assisting in patient recovery. Thus, a variety of factors contribute to poor outcomes for patients with hard-to-heal wounds. To validate and extend these preliminary results, future surveys of patients with hard-to-heal wounds should focus on additional reasons patients do not seek professional help sooner. To improve health outcomes and QoL, assessment of patient socioeconomic variables should occur whenever wound closure stalls.

Patient and Healthcare Provider Perspectives on the Pathway to Diagnosis of Seborrheic Dermatitis in the United States.

INTRODUCTION: Seborrheic dermatitis (SD) is a common, chronic inflammatory skin condition associated with significant impact on quality of life, yet its etiology and pathophysiology are not well understood. With significant impact on patients' quality of life, understanding the diagnostic pathway from the perspectives of patient and healthcare providers (HCPs) is crucial. METHODS: An online survey was developed and administered in conjunction with the Harris Poll to gain insight into patient and HCP perspectives about SD diagnosis and management from December 2021 to January 2022. RESULTS: Most patients were unaware of SD before their diagnosis (71%) and experienced difficulty finding information online (56%). Patients delayed seeking medical attention for SD by an average of 3.6 years, with most patients feeling their symptoms did not require medical attention (63%), a perception that HCPs correctly anticipated. Additionally, most patients (58%) reported embarrassment discussing their SD symptoms with HCPs, a factor HCPs underestimated. HCPs also underestimated the percentage of patients self-reporting moderate-severity SD. Patients preferred dermatology HCPs for SD treatment (79%), and reported visiting an average of 2.3 different HCPs, with 75% of patients seeing more than one provider. CONCLUSION: These insights highlight the complexities in the diagnostic and management pathways of SD and underscore the need for a more nuanced understanding and approach in addressing the condition. Infographic available for this article. INFOGRAPHIC.

Perioperative Patient Perspectives on Orthognathic Surgery - A Prospective Study.

Introduction: Understanding patient motivations and expectations of orthognathic surgery are critical aspects of the perioperative assessment, as these factors have been demonstrated to influence patient satisfaction with surgical outcomes. Materials and Methods: Consecutive patients undergoing orthognathic surgery by a tertiary oral and maxillofacial surgeon underwent two structured interviews to explore their pre-operative motivations for orthognathic surgery, their post-operative reflections on the surgery and their outcomes. Interviews were transcribed verbatim and analysed using thematic analysis. Results: Eighteen patients were recruited and interviewed preoperatively, and seven completed interviews postoperatively. Pre-operative themes describe patient hopes for aesthetic improvements, socio-emotional improvements, functional improvements and reduced pain, as well as fears about surgical risks, surgical recovery and changing appearance. Post-operative themes describe the challenging recovery process, the absence of regrets and functional, aesthetic and socio-emotional improvements. Discussion: Orthognathic surgery patients may be motivated by functional, aesthetic and socio-emotional improvements before surgery.

Real-world evidence evaluation on consumer experience and prescription journey of diclofenac gel in Sweden.

OBJECTIVES: The aim of this study was to understand profiles of topical Voltaren gel diclofenac (VGD) 2.32 and 1.16% consumers through analyzing prescription patterns and to characterize treatment satisfaction, functional impairment, and pain relief after over-the-counter (OTC) VGD use in Sweden under real-world conditions. METHODS: This observational, real-world study conducted in Sweden had retrospective and prospective segments. The retrospective secondary data segment utilized 12-month diclofenac gel prescription data from the Swedish eHealth Agency (E-hälsomyndigheten). The prospective segment included electronic surveys completed at baseline and weeks 4 and 12 by adult consumers who purchased OTC VGD to treat their pain. RESULTS: Secondary data analyses (n = 12,145) showed that 56.7% of patients receiving diclofenac gel were females ≥70 years old. Most patients did not switch pain treatments; the mean time between diclofenac gel refills was about 2.5 months. From the surveys (n = 264), VGD provided pain relief, indicated by improvement in 11-point pain numeric rating scale scores. Average pain severity at baseline was 5.8 - improving by a mean of 1.3 and 1.9 points at weeks 4 and 12, respectively. The majority of consumers reported improvement in daily functioning (i.e., health-related quality of life [HRQoL]), and most were at least somewhat satisfied with VGD treatment results. CONCLUSIONS: This real-world study provides important insights into the prescription patterns of diclofenac gel and the consumer experience with OTC VGD in Sweden. Patients rarely switched to other topical nonsteroidal anti-inflammatory drugs, and VGD consumers reported pain relief and improved HRQoL compared to baseline - resulting in treatment satisfaction.

Patient perspective on symptoms of Notalgia paresthetica: subpopulation results from the Neuropathic Itch Patient Survey (NIRVE).

Background: Notalgia paresthetica (NP) is a form of neuropathic itch characterized by recurrent itch in the mid back. Much about NP remains unclear, especially the patient experience.Objectives: The Neuropathic Itch Patient Survey (NIRVE) was a global, online survey conducted to better characterize the symptom burden of neuropathic itch from the patient perspective.Patients and methods: This report focuses on the symptom burden of the subpopulation of NIRVE participants with a self-reported diagnosis of NP (N = 91). Respondents reported visiting a median of 2 healthcare providers (HCPs) for their symptoms before receiving an accurate diagnosis of NP.Results: The most common cutaneous symptoms ever experienced were itch/pruritus, sensitive skin, painful or raw skin, numbness, and tingling. The symptoms reported by the most respondents as currently being experienced included itch/pruritus, numbness, painful or raw skin, tingling, and burning or hot sensation. Of patients currently experiencing symptoms, numbness and itch/pruritus were ranked as the most intense, followed by tingling, burning or hot sensation, and then painful or raw skin. Most patients consult multiple healthcare providers (HCPs) before receiving a diagnosis for their condition.Conclusion: Itch is overwhelmingly the most prevalent symptom of the condition, although half of patients also report experiencing sensitive skin, painful or raw skin, numbness, or tingling.

Identifying the drivers of overall rating of cancer care: Insights from the second wave of the Swiss Cancer Patient Experiences study.

BACKGROUND: Patient experience surveys gather information on various aspects of care via numerous survey items. Identifying the most critical areas of patient experience to prioritize for quality care improvement can be challenging. The objective of this study was to determine which care experience items are the drivers influencing patients' overall rating of cancer care. METHODS: Data from 2750 adult patients with cancer from the second wave of the Swiss Cancer Patient Experiences study were analyzed. This cross-sectional survey was conducted in eight Swiss hospitals from September 2021 to February 2022. Stepwise logistic regression examined the relationship between overall care rating and 29 patient experience items covering different patient-centered care dimensions while adjusting for sociodemographic and health variables. RESULTS: Overall, patients rated their cancer care experience at 8.9 out of 10. Stepwise regression identified seven drivers contributing to overall care rating. The strongest drivers were "professionals worked well together" (odds ratio [OR], 4.81) and "tests were not repeated" (OR, 2.09) from the coordination and integration dimension, "offered support for symptoms during treatment" (OR, 2.11) from the physical comfort dimension, followed by "hospital staff ensured available home support" (OR, 1.99), "offered to see health professional for concerns" (OR, 1.91), "treatment options were explained" (OR, 1.75), and "involved in treatment decisions as desired" (OR, 1.68). CONCLUSIONS: This study evaluated the care experiences of patients with cancer with a comprehensive tool that identified seven key factors independently associated with overall care rating. By concentrating on these areas, hospitals can not only improve the patient care experience but also efficiently allocate resources to quality improvement initiatives.

Quality of Care and Management of Atopic Dermatitis Across Different Levels of Healthcare-A Survey-Based Patient Experience.

Atopic dermatitis (AD) is a chronic and fluctuating disease. Optimal management of AD and related comorbidities requires seamless coordination across multiple layers of the healthcare system. The objective of this survey was to explore patients' experiences with current management of AD. Out of 251 responders to this anonymous survey, 76% reported to have moderate or severe AD. Sixty-nine percent with moderate and 45% with severe AD were followed up at primary care level only. Use of advanced systemic treatment options was rare, and the majority experienced itch (97%), dry skin, rash, negative impact on self-esteem and comorbidities despite ongoing treatment. Only 36% received a treatment plan, more often in secondary (78.3%) than primary care (25.0%). Forty-three percent did not know who was responsible for their follow-up and 54% felt no one was responsible. Treatment options were commonly not known or understood. The survey results demonstrate undertreatment, lack of a holistic approach for management of AD. A national pathway including clear referral criteria and timelines can streamline management of AD across multiple levels of the healthcare system.

The Use of Online Consultation Systems and Patient Experience of Primary Care: Cross-Sectional Analysis Using the General Practice Patient Survey.

BACKGROUND: NHS England encourages the use of online consultation (OC) systems alongside traditional access methods for patients to contact their general practice online and for practices to manage workflow. Access is a key driver of patients' primary care experience. The use of online technology and patient experience vary by sociodemographic characteristics. OBJECTIVE: This study aims to assess the association between OC system use and patient experience of primary care in English general practice and how that varies by OC system model and practice sociodemographic characteristics (rurality, deprivation, age, and ethnicity). METHODS: We categorized practices as "low-use" or "high-use" according to the volume of patient-initiated contacts made via the OC system. We considered practices using one of 2 OC systems with distinct designs and implementation models-shorter "free text" input with an embedded single workflow OC system (FT practices) and longer "mixed text" input with variation in implemented workflow OC system (MT practices). We used 2022 General Practice Patient Survey data to capture 4 dimensions of patient experience-overall experience, experience of making an appointment, continuity of care, and use of self-care before making an appointment. We used logistic regression at the practice level to explore the association between OC system use and patient experience, including interaction terms to assess sociodemographic variation. RESULTS: We included 287,194 responses from 2423 MT and 170 FT practices. The proportions of patients reporting positive experiences at MT and FT practices were similar or better than practices nationally, except at high-use MT practices. At high-use MT practices, patients were 19.8% (odds ratio [OR] 0.802, 95% CI 0.782-0.823) less likely to report a good overall experience; 24.5% (OR 0.755, 95% CI 0.738-0.773) less likely to report a good experience of making an appointment; and 18.9% (OR 0.811, 95% CI 0.792-0.83) less likely to see their preferred general practitioner; but 27.8% (OR 1.278, 95% CI 1.249-1.308) more likely to use self-care, compared with low-use MT practices. Opposite trends were seen at FT practices. Sociodemographic inequalities in patient experience were generally lower at high-use than low-use practices; for example, gaps in overall experience between practices with the most and fewest White patients decreased by 2.7 percentage points at MT practices and 6.4 percentage points at FT practices. Trends suggested greater improvements in experience for traditionally underserved groups-patients from urban and deprived areas, younger patients, and non-White patients. CONCLUSIONS: An OC system with shorter free text input and an integrated single workflow can enhance patient experience and reduce sociodemographic inequalities. Variation in patient experience between practices with different sociodemographic characteristics and OC systems underscores the importance of tailored design and implementation. Generalizing results across different OC systems is difficult due to variations in how they are integrated into practice workflows and communicated to patients.

Advice after urgent suspected cancer referral when cancer is not found in England: Survey of patients' preferences and perceived acceptability.

Objective: No standardised approach exists to provide advice after urgent suspected cancer (USC) referral when cancer is not found. This study aimed to assess preferences and acceptability of receiving advice after USC referral related to: 1) managing ongoing symptoms, 2) responding to early symptoms of other cancers, 3) cancer screening, 4) reducing risks of future cancer. Methods: 2,541 patients from two English NHS Trusts were mailed a survey 1-3 months after having no cancer found following urgent suspected gastrointestinal or head and neck cancer referral. Participants were asked about: willingness to receive advice; prospective acceptability; preferences related to mode, timing and who should provide advice; and previous advice receipt. Results: 406 patients responded (16.0%) with 397 in the final analyses. Few participants had previously received advice, yet most were willing to. Willingness varied by type of advice: fewer were willing to receive advice about early symptoms of other cancers (88.9%) than advice related to ongoing symptoms (94.3%). Acceptability was relatively high for all advice types. Reducing the risk of future cancer advice was more acceptable. Acceptability was lower in those from ethnic minority groups, and with lower levels of education. Most participants preferred to receive advice from a doctor; with results or soon after; either face to face or via the telephone. Conclusions: There is a potential unmet need for advice after USC referral when no cancer is found. Equitable intervention design should focus on increasing acceptability for people from ethnic minority groups and those with lower levels of education.

Recent daily life burdens associated with neovascular age-related macular degeneration involve difficulties in use of electronic devices.

Neovascular age-related macular degeneration (nAMD) is a prevalent cause of permanent vision loss and blindness in the elderly worldwide, with a significant impact on patients' daily lives. However, burdens related to nAMD from the patients' perspective have not been well documented. Here we developed a new questionnaire after eliciting nAMD patients' daily challenges followed by a pilot survey. Seven daily life burden domains were identified, and a quantitative survey was conducted using the questionnaire in the real-world clinic. Of the total 153 participants (mean age, 76.3 ± 8.3 years), 67 (43.8%) had bilateral nAMD, and 79 (52.7%) were classified into severe nAMD according to the best-corrected visual acuity with cut-off value of 0.52 in logMAR. Patients with bilateral and severe nAMD had significantly higher burden scores across all domains. Network models for the bilateral and severe disease subgroups identified the interactions between "activity of daily living" and "hand-eye coordination" and between "use of electronic devices" and "face recognition" domains, which were considered to be important burdens for the patients. These results can advance ophthalmologists' understanding of the impact of nAMD on patients' daily lives and the importance of active and continuing treatment for patients with nAMD.

Perceptions of digital technology use for monitoring health in people living with neurological disorders.

BACKGROUND: Digital technology offers individuals the opportunity to monitor their symptoms. Information gathered from apps, devices, and web platforms may be used to direct clinical care and to support research. AIM: Using this survey, we aim to explore the views of people attending the Anne Rowling Regenerative Neurology Clinic (ARRNC) and their relatives/caregivers regarding the use of digital health technologies to monitor health. METHOD: People attending the ARRNC were invited to complete a structured 18-item questionnaire evaluating their experience and attitudes to using technology for monitoring health. People with neurodegenerative disease (pwND) and their caregivers completed a mix of closed and open-ended questions. RESULTS: 249 people responded, 51 relatives/caregivers and 198 pwND. 67.1% (n= 167) of respondents do not use technology for monitoring their health, but 98.2% (n = 164) of these are interested in their future use. 29.7% (n = 74) respondents currently use a smartphone for health monitoring, 20.9% (n = 52) use a wearable device, and 13.3% (n = 33) use a tablet. 79.3% (n = 65) of users use their technology for monitoring physical activity, 37.8% (n = 31) use it for assisting with self-management, and 41.5% (n = 34) use it for tracking sleep. Factors which would encourage use of technology are ease of access to devices and ability to monitor health. Respondents reported data security concerns and difficulty using technology as potential barriers. CONCLUSION: People attending a neurology clinic, and their relatives/caregivers, support the use of digital technologies as an adjunct to routine care. There is a need for coordinated digital strategies for development and delivery of validated measures.

Inequalities in patients' experiences with cancer care: the role of economic and health literacy determinants.

BACKGROUND: Patients with fewer socioeconomic and health literacy resources are disadvantaged in their access and use of healthcare, which may give rise to worse experiences with care and thus inequalities in patient experiences. However, only a limited number of studies have examined how socioeconomic and health literacy factors shape inequalities in patients' experiences with cancer care. OBJECTIVE: To examine whether patients' experiences with cancer care differ according to their economic status and health literacy. METHODS: Secondary analysis of data on 2789 adult patients diagnosed with cancer from the Swiss Cancer Patient Experiences-2 (SCAPE-2) study, a cross-sectional survey conducted in eight hospitals across Switzerland from September 2021 to February 2022. Regression analysis was applied to examine the independent effect of patients' economic status and health literacy on various outcomes of experiences with cancer care, covering eight different dimensions of patient-centred care, controlling for confounding factors. RESULTS: Adjusted regression analysis showed that patients with lower economic status reported significantly worse experiences with cancer care in 12 out of 29 specific care experiences, especially in the dimensions of 'respect for patients' preferences' and 'physical comfort' where all items of experiences were associated with economic status. Additionally, lower health literacy was associated with worse patient experiences in 23 specific care experiences. All items in the dimensions of 'respect for patients' preferences', 'physical comfort' and 'emotional support' were associated with health literacy. DISCUSSION: This study revealed significant inequalities in experiences with cancer care shaped by the economic status and health literacy of patients across different dimensions of patient-centred care. It is essential to address the needs of more disadvantaged patients who face obstacles in their access and use of the healthcare system, not only to mitigate inequalities in cancer care but also to avoid inequalities in health outcomes.

Understanding Patient Experiences to Inform Future Studies to Optimize Personalization of Treatment for Early Breast Cancer.

BACKGROUND: Breast cancer treatment is multimodal, but not all patients benefit from each treatment, and many experience morbidities significantly impacting quality of life. There is increasing interest in tailoring breast cancer treatments to optimize oncological outcomes and reduce treatment burden, but it is vital that future trials focus on treatments that most impact patients. This study was designed to explore patient experiences of treatment to inform future research. METHODS: An online survey was co-developed with patient advocates to explore respondents' experiences of breast cancer treatment. Questions included simple demographics, treatments received, and views regarding omitting treatments if that is deemed safe. The survey was circulated via social media and patient advocacy groups. Responses were summarized by using simple statistics; free text was analyzed thematically. RESULTS: Of the 235 participants completing the survey, 194 (82.6%) would choose to omit a specific treatment if safe to do so. The most commonly selected treatments were chemotherapy (n = 69, 35.6%) and endocrine therapy (n = 61, 31.4%) mainly due to side effects. Fewer respondents would choose to omit surgery (n = 40, 20.6%) or radiotherapy (n = 20, 10.3%). Several women commented that survival was their "absolute priority" and that high-quality evidence to support the safety of reducing treatment would be essential. CONCLUSIONS: Patients with breast cancer are individuals who may wish to optimize different components of their treatment. A portfolio of studies co-designed with patients is needed to establish an evidence base for greater treatment personalization with studies focused on reducing avoidable chemotherapy and endocrine therapy a priority.

Health-related quality of life of adult and adolescent patients living with alopecia areata in Australia.

INTRODUCTION: To understand the experiences of adolescent and adult patients living with alopecia areata (AA) in Australia regarding symptom severity and the impact on psychosocial well-being and work/classroom productivity. MATERIALS AND METHODS: A cross-sectional online patient survey among adolescent and adult patients diagnosed with AA was recruited via the Australia Alopecia Areata Foundation. Patient-reported outcomes were also assessed. RESULTS: A total of 337 patients (49 adolescents; 288 adults), with a mean ± standard deviation age of 14.7 ± 1.55 and 38.9 ± 13.31 years for adolescents and adults, respectively, were included. In the group with extensive hair loss (Scalp Hair Assessment Patient-Reported Outcome, categories 3 + 4, n = 172), we observed higher emotional symptom and activity limitation scores (Alopecia Areata Patient Priority Outcomes, emotional symptoms: adults 2.5 ± 1.03, adolescents 2.2 ± 1.15; activity limitations: adults 1.4 ± 1.15, adolescents 1.2 ± 0.99). Additionally, in adults, the Alopecia Areata Symptom Impact Scale global score was 4.0 ± 2.10 (symptoms subscale score 4.1 ± 1.91; interference subscale scores 3.8 ± 2.73). Hospital Anxiety and Depression Scale scores were high across participants, irrespective of hair loss extent (adults: anxiety 9.2 ± 3.85, depression 6.6 ± 3.95; adolescents: anxiety 9.7 ± 4.65, depression 5.2 ± 3.59). Work and classroom productivity were substantially impaired due to AA, with 70.5% of adults and 57.1% of adolescents reporting activity impairment, and overall work/classroom impairment reported at 39.2% and 44.9%, respectively. CONCLUSIONS: AA impacts the physical, emotional and psychosocial well-being of both adult and adolescent patients. More extensive hair loss more profoundly impacts those living with AA. Patients may benefit from patient-centred care approaches addressing the impact of hair loss on mental and emotional well-being, daily activities and work productivity.

Real-world use, perception, satisfaction, and adherence of calcipotriol and betamethasone dipropionate PAD-cream in patients with plaque psoriasis in Spain and Germany: results from a cross-sectional, online survey.

BACKGROUND: Psoriasis significantly impacts patients' quality of life (QoL). Dissatisfaction and non-adherence are major barriers associated with topical treatments. A cream based on the polyaphron dispersion (PAD) Technology containing a fixed-dose of calcipotriol (CAL) and betamethasone dipropionate (BDP) was designed for a patient-friendly psoriasis management. The CAL/BDP PAD-cream demonstrated efficacy, convenience, and safety/tolerability in clinical trials. OBJECTIVES: This research assesses the real-world use, perception, satisfaction, and adherence of CAL/BDP PAD-cream among plaque psoriasis patients. METHODS: Between September-November 2023, psoriasis patients from Spain and Germany using or having used CAL/BDP PAD-cream for >2 weeks were recruited via Wefight network to complete a 30-questions online survey. Anonymized results were pooled for descriptive statistical analysis. RESULTS: The survey was completed by 129 patients (mean age: 43 years; 66% females; mean psoriasis duration: 12 years). Most patients (93%) were satisfied with CAL/BDP PAD-cream. The 66% reported high adherence (visual analogue scale 80-100) and 91% preferred CAL/BDP PAD-cream to their previous topical(s). Patients highlighted its ease/convenience of application, tolerability, and lack of itching/burning. CONCLUSIONS: Psoriasis patients treated with CAL/BDP PAD-cream in a real-world setting show high satisfaction, good adherence, and a positive perception of the product, suggesting that favorable outcomes observed in clinical trials translate to real clinical practice.

MAGENTA: a Multinational patient survey assessing the Awareness, perceptions and unmet needs in GENetic Testing and counselling among patients with breAst cancer.

Objective: Genetic testing and counselling are critical in assessing breast cancer risk and tailoring treatment strategies. However, several barriers hinder patients from opting for genetic testing/counselling, leading to fewer than one-third of patients undergoing testing and even fewer being offered counselling. A granular understanding of these barriers is essential in overcoming them. Methods: A multinational survey developed by patient authors was conducted in 9 countries, to identify the specific local/regional barriers. The survey question pathway was individualized, based on responses to prior questions. Percentage responses to a response option were calculated based on the total number of respondents to that question. Chi-square tests were used to assess the significance of the results, if applicable. Results: The final analysis set (FAS) included 1,176 respondents, with a subset of this responding to all questions. In the FAS, 63% of respondents had undergone testing. Among those who got tested, 70% were offered testing. Among untested respondents, only 40% were offered the test but eventually did not get tested. In the tested population, 44% received counselling, which was significantly higher than 7% (p<0.00001) in the untested group. Among those reporting on awareness, 71% reported awareness level between 'very low' and 'moderate' prior to cancer diagnosis. Most respondents (71%) agreed that all breast cancer patients should undergo testing before treatment initiation. However, Asian patients were less likely to endorse this view compared to respondents from other regions (25% vs ≥50%; p<0.00001). A higher proportion of tested respondents were 'very willing' to get their family members tested (44%) versus untested respondents (11%), with relatively higher willingness among Australian (77%) and Russian respondents (56%), the regional variation being statistically significant (p<0.00001). Conclusions: Critical gaps remain in the access, awareness and perceived value of genetic testing and counselling, with regional variance or difference between the tested and untested groups. Most patients are not offered counselling, which may be associated with the low uptake of testing. Strategic action is needed to drive policy-shaping and improve access to testing and counselling, including raising patient awareness and improving patient experience for better treatment outcomes.

[Reasons for non-participation in a patient survey in the context of prehospital emergency medical care by community emergency paramedics - A retrospective observational study]. / Gründe für die Nichtteilnahme an einer Patientenbefragung im Kontext der prähospitalen Notfallversorgung durch Gemeindenotfallsanitäter - eine retrospektive Beobachtungsstudie.

BACKGROUND: In order to evaluate whether the new rescue means "community emergency paramedics" (Gemeindenotfallsanitäter [G-NFS]) relieves the emergency medical service (EMS) in the care of low-priority emergencies, the perspective of general practitioners and patients was also surveyed in a written questionnaire as part of an innovation fund project. Recruitment for participation in the study proved to be difficult. The aim of this study is to evaluate why the G-NFS decided against providing information on study participation and what measures would be necessary to include more emergency patients in surveys in the future. METHODS: Retrospective analysis of the assignment protocols from April 1, 2021 to June 30, 2022. In addition to patient characteristics, data on treatments, interventions and recommendations to patients as well as reasons for non-participation in the patient survey were collected. RESULTS: 5,395 G-NFS protocols that contained information on non-participation were included in the analysis. The average age of the patients was 62.4 years (SD 22.7), and 50.2% were female. 57.4% of the cases were categorised as non-urgent, and 35.2% of the cases required an additional ambulance to be alerted. 404 (7.5%) patients used the EMS more than once, 1,120 (20.8%) did not have sufficient language skills, 1,012 (18.8%) patients declined study participation, and 2,975 (55.1%) patients were not able to participate according to the G-NFS assessment. Dementia/neurocognitive impairment (35%), acute/emergency situation (26.5%), mental health impairment (10.3%), and substance abuse (6.5%) were given as reasons for non-participation from the G-NFS perspective. DISCUSSION: The results show that more than half of the patients were unable to take part in a written survey for various reasons, even though there was no need for urgent care. This could be due to a high demand for care and the complex consent procedure. In addition, further resources are required to provide needs-based care for these patients in order to relieve the burden on emergency medical care. Over half of the patients were unable to take part in a written survey for various reasons. Further research is needed to determine what consent procedures are appropriate to facilitate patients' study participation.

Patient Experiences and Challenges in the Management of Autoinflammatory Diseases-Data from the International FMF & AID Global Association Survey.

BACKGROUND: Autoinflammatory diseases (AIDs) are rare, mostly genetic diseases that affect the innate immune system and are associated with inflammatory symptoms. Both paediatric and adult patients face daily challenges related to their disease, diagnosis and subsequent treatment. For this reason, a survey was developed in collaboration between the FMF & AID Global Association and the Erlangen Center for Periodic Systemic Autoinflammatory Diseases. METHODS: The aim of the survey was to collect the personal assessment of affected patients with regard to their current status in terms of diagnostic timeframes, the interpretation of genetic tests, the number of misdiagnoses, and pain and fatigue despite treatment. RESULTS: In total, data from 1043 AID patients (829 adults and 214 children/adolescents) from 52 countries were collected and analyzed. Familial Mediterranean fever (FMF) (521/50%) and Behçet's disease (311/30%) were the most frequently reported diseases. The average time to diagnosis was 3 years for children/adolescents and 14 years for adults. Prior to the diagnosis of autoinflammatory disease, patients received several misdiagnoses, including psychosomatic disorders. The vast majority of patients reported that genetic testing was available (92%), but only 69% were tested. A total of 217 patients reported that no increase in acute-phase reactants was detected during their disease episodes. The intensity of pain and fatigue was measured in AID patients and found to be high. A total of 88% of respondents received treatment again, while 8% reported no treatment. CONCLUSIONS: AID patients, particularly adults, suffer from significant delays in diagnosis, misdiagnosis, and a variety of symptoms, including pain and fatigue. Based on the results presented, raising awareness of these diseases in the wider medical community is crucial to improving patient care and quality of life.

A quantitative and qualitative analysis of patient group narratives suggests common biopsychosocial red flags of undiagnosed rare disease.

BACKGROUND: The 'diagnostic odyssey' is a common challenge faced by patients living with rare diseases and poses a significant burden for patients, their families and carers, and the healthcare system. The diagnosis of rare diseases in clinical settings is challenging, with patients typically experiencing a multitude of unnecessary tests and procedures. To improve diagnosis of rare disease, clinicians require evidence-based guidance on when their patient may be presenting with a rare disease. This study aims to identify common experiences amongst patients with rare diseases, to inform a series of 'red flags' that can aid diagnosis of rare diseases in non-specialist settings. A questionnaire was developed by Medics for Rare Diseases, informed by the experiences of clinicians, rare disease patients and patient advocates, and was shared with UK-based rare disease patient groups. Study participants were engaged via social media platforms, blogs and email newsletters of three umbrella rare disease organisations. The questionnaire, comprising 22 questions, was designed to identify typical experiences relating to physical and psychosocial manifestations and presentation of disease, patient interactions with healthcare providers, and family history. RESULTS: Questionnaire responses were received from 79 different rare disease patient groups and the common experiences identified were used to inform seven red flags of rare disease: multi-system involvement (3 or more); genetic inheritance pattern; continued presentation throughout childhood and adulthood; difficulties at school, especially relating to absences, difficulty participating in physical education and experiences of bullying or social isolation; multiple specialist referrals; extended period with unexplained symptoms; and misdiagnosis. In light of the red flags identified, recommendations for primary care and education settings have been proposed, focusing on the need for holistic assessment and awareness of both physical and psychosocial factors. CONCLUSIONS: This study identified key commonalities experienced by patients with rare disease across physical and psychosocial domains, in addition to understanding patients' history and experiences with healthcare providers. These findings could be used to develop a clinical decision­making tool to support non-specialist practitioners to consider when their patient may have an undiagnosed rare condition, which may minimise the challenges of the 'diagnostic odyssey' and improve the patient experience.