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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The most effective principles of the organization and intensification of the educational process on the subject of "Scientific style of speech" (Russian as a foreign language) are described. The development of a set of exercises of pre-text, pre-text and post-text exercises aimed at systematization and consolidation of knowledge, as well as the development of communication skills in a foreign language of future doctors (foreign medical students of the Faculty of Medicine 2-3 courses, topic "Angina pectoris", section "Patient Survey") is presented. Keywords: medical record, patient survey, role-playing game, communication, teaching method, methodology, specialty language, Russian as a foreign language.

Abstract 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.

Abstract 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.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: Despite limited evidence supporting its effectiveness, most guidelines recommend long-term, routinely scheduled in-person surveillance of patients with early breast cancer (EBC). The COVID-19 pandemic led to increased use of virtual care. This survey evaluated patient perspectives on follow-up care. Methods: Patients with EBC undergoing surveillance were surveyed about follow-up protocols, perceptions, and interest in clinical trials assessing different follow-up strategies. Results: Of 402 approached patients 270 completed the survey (response rate 67%). Median age 62.5 years (range 25–86) and median time since breast cancer diagnosis was 3.8 years (range < 1–33 years). Most (n = 148/244, 60%) were followed by more than one provider. Routine follow-ups with breast examination were mostly conducted by medical/radiation oncologists every 6 months (n = 110/236, 46%) or annually (n = 106/236, 44%). Participants felt routine follow-up was useful to monitor for recurrence, manage side effects of cancer treatment and to provide support/reassurance. Most participants felt regular follow-up care would detect recurrent cancer earlier (n = 214/255, 96%) and increase survival (n = 218/249, 88%). The COVID-19 pandemic reduced the number of in-person visits for 54% of patients (n = 63/117). Patients were concerned this reduction of in-person visits would lead to later detection of both local (n = 29/63, 46%) and distant recurrences (n = 25/63, 40%). While many felt their medical and radiation oncologists were the most suited to provide follow-up care, 55% felt comfortable having their primary care provider (PCP) conduct surveillance. When presented with a scenario where follow-up has no effect on earlier detection or survival, 70% of patients still wanted routine in-person follow-up for reassurance (63%) with the goal of earlier recurrence detection (56%). Conclusions: Despite limited evidence of effectiveness of routine in-person assessment, patients continue to place importance on regularly scheduled in-person follow-up. [ABSTRACT FROM AUTHOR]

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.

AbstractBackground 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.

BackgroundData from surveys of patient care experiences are a cornerstone of public reporting and pay-for-performance initiatives. Recently, increasing concerns have been raised about survey response rates and how to promote equity by ensuring that responses represent the perspectives of all patients.ObjectiveReview evidence on survey administration strategies to improve response rates and representativeness of patient surveys.Research designSystematic review adhering to the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines.Study selectionForty peer-reviewed randomized experiments of administration protocols for patient experience surveys.ResultsMail administration with telephone follow-up provides a median response rate benefit of 13% compared with mail-only or telephone-only. While surveys administered only by web typically result in lower response rates than those administered by mail or telephone (median difference in response rate: -21%, range: -44%, 0%), the limited evidence for a sequential web-mail-telephone mode suggests a potential response rate benefit over sequential mail-telephone (median: 4%, range: 2%, 5%). Telephone-only and sequential mixed modes including telephone may yield better representation across patient subgroups by age, insurance type, and race/ethnicity. Monetary incentives are associated with large increases in response rates (median increase: 12%, range: 7%, 20%).ConclusionsSequential mixed-mode administration yields higher patient survey response rates than a single mode. Including telephone in sequential mixed-mode administration improves response among those with historically lower response rates; including web in mixed-mode administration may increase response at lower cost. Other promising strategies to improve response rates include in-person survey administration during hospital discharge, incentives, minimizing survey language complexity, and prenotification before survey administration.

Background: Neuromyelitis optica spectrum disorder (NMOSD) is a rare and debilitating disease that has become more widely recognized in China. Legislative measures have been implemented by the government to improve treatment access for rare diseases. Objectives: To investigate the diagnostic journey, treatment status, treatment accessibility, and treatment satisfaction of the NMOSD patients on disease-modifying therapies (DMTs) in China. Design: A patient online survey. Methods: This cross-sectional online survey was conducted between November 2022 and January 2023. Patients over 18 years old and diagnosed with NMOSD were included. The questionnaire consisted of five sections covering demographics, diagnostic and treatment experiences, DMTs availability, cost and affordability, and treatment satisfaction using the Treatment Satisfaction Questionnaire for Medication (version II). Patient opinions and demands were also collected at the end of the survey. Results: A total of 375 patients diagnosed with NMOSD were recruited, of which 321 patients used DMTs. It required 1.22 ± 3.22 years and 3.58 ± 4.24 hospital visits for a definitive diagnosis. One-third of the patients still needed to travel for over 2 h to access DMTs. The total treatment expenditure was estimated to be CNY 59,827.00 (USD 8315.95) a year. Drug expenses alone accounted for 52.22% of the average annual household income. The most common challenges perceived were the inability to afford treatment and a lack of effective options. No significant difference was found in treatment satisfaction among DMTs, except that rituximab scored lowest in convenience compared to other DMTs. Patients' age and travel time required to obtain medications were negatively associated with global treatment satisfaction. Conclusion: In China, patients with NMOSD face challenges in obtaining proper treatment due to diagnostic difficulties, distant medication access, and high costs. Policies should prioritize improving disease education and alleviating financial burdens for the patients. [ABSTRACT FROM AUTHOR]

Background: Epithelioid hemangioendothelioma (EHE) is an ultra-rare, vascular sarcoma with clinical presentation ranging from an indolent to an aggressive form. Over 50% of patients present with metastatic disease, requiring systemic therapy, although no systemic therapies are specifically approved for EHE. Retrospective evidence supports the activity of mTOR inhibitors (e.g. sirolimus), although available only off-label. EHE patients and advocates are therefore working to support approval of effective treatments by collecting data on patient perspectives and experiences. Materials and methods: In February 2023, the EHE Rare Cancer Charity (UK) and The EHE Foundation (US), with other advocates, conducted a survey of perspectives and experiences of EHE patients regarding the use and accessibility of sirolimus. The survey consisted of 20 questions designed for individuals undergoing treatment, those who had been treated, or had never been treated with the drug. Widely promoted within the patient community, the online survey categorized patients into three cohorts for the analysis: liver transplant patients, non-transplant patients who had ever taken sirolimus and sirolimus-naïve non-transplant patients. Results: The survey evaluated data from 129 patient responses from 21 countries, mostly from USA, UK, Australia, and Canada (70%). The liver transplant, sirolimus and non-sirolimus cohorts were 16%, 25% and 59%, respectively. In the sirolimus group 66% reported treatment durations exceeding one year, with 16% exceeding five years, indicating the drug's efficacy. In the non-sirolimus group, the drug was not available for 42% and for 11% sirolimus was available but not selected for treatment because of its off-label status. Overall, 87% of all patients across all cohorts expressed the importance of the drug's availability as hugely or very important. Conclusion: The survey responses highlight the activity of sirolimus for EHE and the importance of securing a label extension for the drug delivering equitable access to this treatment for patients. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Pulmonary arterial hypertension (PAH) is a life-threatening, progressive disease often diagnosed late in its course. Objectives: To present patient-reported data that were captured within a large, multinational, point-in-time survey of PAH-treating physicians and their patients to better understand the diagnostic journey. Design: Cross-sectional survey conducted in five European countries (EU5), Japan and the USA. Methods: PAH-treating pulmonologists, cardiologists, rheumatologists or internists (USA only) completed a patient record form (PRF) for the next four consecutive adult PAH patients they saw; these patients filled in a patient self-completion (PSC) form on an anonymous, voluntary basis. Our report focuses on patient data; data are from PSC forms unless stated otherwise. Results: Physician-reported PRFs and self-completed PSC forms were obtained for 1152 and 572 patients, respectively. Patients' mean (SD) age was 59.1 (14.0) years, 55.6% were female, and 57.3% had idiopathic PAH. Patient-reported data showed an average delay of 17.0 months between symptom onset and PAH diagnosis. This is longer than physicians estimated (13.8 months): this disparity may be partly due to the time taken by patients to consult a physician about their symptoms [9.6 months overall, longest in the USA (15.3 months)]. Most patients (71.6%) initially consulted primary care physicians about their symptoms and 76.4% of patients were referred to a specialist. Misdiagnoses occurred in 40.9% of patients [most frequent in the USA (51.3%), least common in Japan (27.6%)] and they saw an average of 2.9 physicians overall (3.5 in EU5 versus 2.0 in Japan/USA) before being diagnosed. Diagnosis was most often made by cardiologists (50.4%) or pulmonologists (49.3%). Conclusion: Our data suggest that diagnostic delay in PAH results from patient- and physician-related factors, which differ across regions and include lack of awareness of PAH on both sides. Development of better screening strategies may help address this barrier to timely PAH diagnosis. [ABSTRACT FROM AUTHOR]

Research surrounding tumor boards has focused on patient outcomes and care coordination. Little is known about the patient experience with tumor boards. This survey examined aspects of the patient experience for patients presented at our multidisciplinary endocrine tumor board (ETB). A 15-item survey was distributed via the online patient portal to patients over the age of 18 whose case had been discussed at our ETB over an 18-month period. Descriptive statistics were reported, and a Fisher's exact test was used to examine relationships between variables. A total of 47 patients completed the survey (46%). A majority (72%) report their provider explained what the ETB is, and 77% report being informed their case would be discussed. Most patients were satisfied their case was being discussed (72%). A number of patients did report moderate or severe anxiety knowing their case was being discussed (15%). Sixty-four percent of patients report the ETB recommendations were clearly explained; however, satisfaction with the recommendations was slightly lower (53%). Despite the somewhat low satisfaction with the recommendations, 75% of patients felt more confident in their treatment plan knowing their case was discussed. Finally, if given the chance, 66% responded that they would have been interested in participating in their own ETB discussion. This study provides some insight into the patient experience surrounding tumor board discussions. Overall, patients are satisfied when their case is discussed at ETB. Patients can also experience anxiety about these discussions, and many patients desire to be present for their own discussions. [ABSTRACT FROM AUTHOR]

Introduction: The coronavirus disease 2019 (COVID-19) pandemic created challenges related to disease management of patients with ulcerative colitis (UC). Methods: The UC Narrative COVID-19 survey was conducted from August to December 2021 among adults with UC from the United States, Canada, Japan, France, and Finland. Patients were questioned on disease management, health care access and experience, and preferences for interactions with their doctor. Data were analyzed descriptively. Results: In total, 584 patients qualified for and completed the survey. Compared with 2019, 25% experienced more flares during the pandemic (from early 2020). Most patients (88%) taking prescription medication were very/somewhat satisfied with their current treatment plan; 53% were hesitant to make changes during the pandemic. Factors that patients agreed helped control UC symptoms during the pandemic included fewer social outings (37%), working from home (29%), and less busy schedules (28%). Greater anxiety/stress (43%) and hesitancy to visit a hospital/office (34%) made the control of UC symptoms more difficult. Compared with 2019, more patients relied on certain alternative support systems during the pandemic. Patients who used in-person and virtual appointments were equally very satisfied/satisfied with the quality of care (both 81%). In-person appointments were preferred by 68% of patients when meeting a new doctor, 55% when experiencing a flare, and 52% for regular check-ups; 41% preferred virtual appointments for UC prescription refills. Conclusion: During the pandemic, most patients were satisfied with their current UC treatment plan and access to care; more patients relied on certain alternative UC management support systems, and many were impacted by anxiety/stress. Plain Language Summary: The coronavirus disease 2019 (COVID-19) pandemic created challenges for patients with ulcerative colitis. These challenges included managing symptoms, lifestyle changes, and access to health care. We asked patients with ulcerative colitis to answer questions about their experience during the pandemic to try to understand how the pandemic was affecting them. A total of 584 patients from the United States, Canada, Japan, France, and Finland took part. Patients were asked questions online. We asked them about their disease activity during the COVID-19 pandemic compared with before the pandemic and how their disease was managed, their access to health care, and their experience during the pandemic. We also asked them about their satisfaction with the types of appointments they had during the pandemic (for example, in-person or virtual meetings), and their interactions and preference for interactions with their doctors. We found that most patients were satisfied with their current treatment plan, their access to health care, and the quality of the care they received. However, many patients experienced greater stress or anxiety, and there was a negative impact on their emotional well-being. During the pandemic, more patients relied on alternative support systems such as online patient portals or virtual appointments, but patients preferred in-person appointments with their doctors in most cases except for refilling prescriptions. This information may help doctors understand the impact of the COVID-19 pandemic on patients with ulcerative colitis, and may help doctors and patients develop treatment plans that include both in-person and virtual appointments. Graphical Plain Language Summary: [ABSTRACT FROM AUTHOR]

ObjectiveGenetic 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.MethodsA 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.ResultsThe 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

Abstract Background Progressive ataxias are rare and complex neurological disorders that represent a challenge for the clinicians to diagnose and manage them. This study explored the patient pathways of individuals attending specialist ataxia centres (SAC) compared with non–specialist settings. We investigated specifically how diagnosis was reached, the access to healthcare services, treatments, and care satisfaction. The focus of this study was on early intervention, coordination of treatment to understand the care provision in different countries. Methods A patient survey was done in the UK, Germany and Italy to gather information about diagnosis and management of the ataxias in specialist (SAC) and non-specialist settings, utilisation of other primary and secondary health care services, and patients’ satisfaction of received treatment. Results Patients gave positive feedback about the role of SAC in understanding their condition, ways to manage their ataxia (p

Describe and characterize treatment patterns, satisfaction, improvement in pain and functional impairment (health-related quality of life [HRQoL]) in users of over the counter (OTC) Voltaren gel diclofenac (VGD) 2.32% and 1.16% in a real-world setting. This observational real-world German study had prospective and retrospective components. The prospective data were collected from electronic surveys completed by adults who purchased VGD to treat their musculoskeletal pain at baseline and 4 and 12 weeks after baseline. Retrospective data were from a 12-month (March 2019 to February 2020) abstraction from dispensing software platforms used in select German pharmacies. Surveys from 467 participants (mean age 60.8 years) were analyzed. Average pain severity at baseline was 6.0 on an 11-point Numeric Rating Scale (0 = no pain, 10 = worst possible pain), improving by 0.8 and 1.2 points at Weeks 4 and 12, respectively. Performance of functional activities (daily/physical/social activities and errands/chores) improved and the proportion of participants with at least moderate interference decreased at both follow-up timepoints. Retrospective analyses indicated that majority of patients receiving VGD (n = 95,085) were ≥65 years old (67.9%), had one dispensed tube (70.8%) and did not switch to another topical treatment (including other NSAIDs) (77.3%), and were co-prescribed at least one cardiovascular medication (74.3%). This study provides the first real-world insights into OTC VGD use in Germany. The participants using VGD reported a decrease in pain severity and an improvement of HRQoL while under treatment, as well as resulting satisfaction with treatment. Patients infrequently switched to alternate topical therapies/NSAIDs. [ABSTRACT FROM AUTHOR]

Objective: To determine the impact of thyroid eye disease (TED) on patients in various stages of the disease. Background: TED is a debilitating and potentially sight-threatening inflammatory autoimmune disease that is frequently misdiagnosed. Challenging quality-of-life (QoL) issues can persist long after the active phase of disease has subsided. Methods: A 62-question survey was designed as a hypothesis-generating instrument to identify key issues confronting patients ≥18 years old with physician-diagnosed TED. Questions focused primarily on physical and emotional status, and QoL experiences in the 2 months prior to the survey. Data for individual questions are presented as summary statistics. Correlations between questions were determined using X² analyses. Results: The 443 respondents were 18 to >80 years old; >90% female, and >80% from the United States. Time since TED diagnosis ranged from <1 year to >10 years. Participants provided >500 free-form responses describing experiences of living with TED. Physical signs/symptoms were experienced by 307/443 (69%) patients. Of those responding to the QoL questions (N = 394), 53 (13%) reported symptoms improving, 73 (19%) reported symptoms worsening, and 255 (65%) reported no change in the 2 months prior to the survey. The most bothersome signs/symptoms were dry/gritty eyes, light sensitivity, bulging eyes, and pressure or pain behind the eyes. Respondents <60 years were significantly (p < 0.0001) more likely to report symptomatic TED than older patients. Of 394 respondents, 179 (45%) reported feeling depressed and/or anxious, 174 (44%) reported concern about their appearance, and 73 (19%) avoided public situations; 192 (49%) reported declines in confidence or feelings of general well-being, and 78 (20%) reported an inability to achieve goals. Activities limited by TED included reading, driving, and socializing. The proportion of respondents experiencing these negative QoL measures was higher when patients reported experiencing >5 symptoms, had been diagnosed within the last 5 years, or were <60 years of age. [ABSTRACT FROM AUTHOR]

Background: Progressive ataxias are rare and complex neurological disorders that represent a challenge for the clinicians to diagnose and manage them. This study explored the patient pathways of individuals attending specialist ataxia centres (SAC) compared with non–specialist settings. We investigated specifically how diagnosis was reached, the access to healthcare services, treatments, and care satisfaction. The focus of this study was on early intervention, coordination of treatment to understand the care provision in different countries. Methods: A patient survey was done in the UK, Germany and Italy to gather information about diagnosis and management of the ataxias in specialist (SAC) and non-specialist settings, utilisation of other primary and secondary health care services, and patients' satisfaction of received treatment. Results: Patients gave positive feedback about the role of SAC in understanding their condition, ways to manage their ataxia (p < 0.001; UK) and delivering care adapted to their needs (p < 0.001; UK), in coordinating referrals to other healthcare specialists, and in offering opportunities to take part in research studies. Similar barriers for patients were identified in accessing the SACs among the selected countries, UK, Germany, and Italy. Conclusions: This study provides crucial information about the ataxia patients care pathways in three European countries. Overall, the results showed a trend in patients' satisfaction being better in SAC compared to non-SAC. The outcomes can be used now for policy recommendations on how to improve treatment and care for people with these very rare and complex neurological diseases across Europe. [ABSTRACT FROM AUTHOR]

BackgroundEpithelioid hemangioendothelioma (EHE) is an ultra-rare, vascular sarcoma with clinical presentation ranging from an indolent to an aggressive form. Over 50% of patients present with metastatic disease, requiring systemic therapy, although no systemic therapies are specifically approved for EHE. Retrospective evidence supports the activity of mTOR inhibitors (e.g. sirolimus), although available only off-label. EHE patients and advocates are therefore working to support approval of effective treatments by collecting data on patient perspectives and experiences.Materials and methodsIn February 2023, the EHE Rare Cancer Charity (UK) and The EHE Foundation (US), with other advocates, conducted a survey of perspectives and experiences of EHE patients regarding the use and accessibility of sirolimus. The survey consisted of 20 questions designed for individuals undergoing treatment, those who had been treated, or had never been treated with the drug. Widely promoted within the patient community, the online survey categorized patients into three cohorts for the analysis: liver transplant patients, non-transplant patients who had ever taken sirolimus and sirolimus-naïve non-transplant patients.ResultsThe survey evaluated data from 129 patient responses from 21 countries, mostly from USA, UK, Australia, and Canada (70%). The liver transplant, sirolimus and non-sirolimus cohorts were 16%, 25% and 59%, respectively. In the sirolimus group 66% reported treatment durations exceeding one year, with 16% exceeding five years, indicating the drug’s efficacy. In the non-sirolimus group, the drug was not available for 42% and for 11% sirolimus was available but not selected for treatment because of its off-label status. Overall, 87% of all patients across all cohorts expressed the importance of the drug’s availability as hugely or very important.ConclusionThe survey responses highlight the activity of sirolimus for EHE and the importance of securing a label extension for the drug delivering equitable access to this treatment for patients.

Abstract Background Understanding how patient-reported experiences of care and overall rating of care vary among patients with different characteristics is useful to help interpret results from patient experience surveys and design targeted improvement interventions. The primary objective of this paper was to identify the socio-demographic and health-related characteristics independently associated with overall rating of cancer care. The secondary objective was to explore if and how these characteristics were associated with specific experiences of cancer care. Methods This cross-sectional multicenter study analyzed self-reported data collected from 2696 patients diagnosed with breast, prostate, lung, colorectal, skin, or hematological cancer from four large hospitals in French-speaking Switzerland. Multivariate logistic regressions with purposeful stepwise selection of independent variables were used to identify the socio-demographic and health-related characteristics independently associated with overall rating of cancer care in the primary analyses. In the secondary analyses, we ran the multivariate model from the primary analyses with specific experiences of care as outcomes to estimate the adjusted odds ratios (OR) and 95% confidence intervals (CI) of the selected characteristics. Results Respondents’ mean rating of overall cancer care was 8.5 on a scale from 0 to 10, with 17% categorized as reporting a low rating (0–7 rating). Being a woman (OR 1.43, 95% CI 1.12–1.83), not being Swiss (OR 1.47, 95% CI 1.12–1.94), reporting lower health literacy (OR 1.95, 95% CI 1.54–2.47), preferring making medical decisions alone (OR 1.92, 95% CI 1.38–2.67), having forgone care due to cost (OR 1.72, 95% CI 1.29–2.29), having used complementary medicine (OR 1.55, 95% CI 1.22–1.97), and reporting poorer health (OR 3.12, 95% CI 2.17–4.50) were all independently associated with a low rating of overall cancer care. Poorer health, lower health literacy, and having forgone care were the three characteristics most often associated with problematic experiences of care. Conclusions Our results identified several patient characteristics consistently associated with lower overall rating of care and specific experiences of cancer care. Among these determinants, health literacy and financial hardship emerged as key recurring factors shaping poor patient experiences that should be prioritized for attention by cancer care services.

Abstract The use of artificial intelligence (AI) in dentistry is rapidly evolving and could play a major role in a variety of dental fields. This study assessed patients’ perceptions and expectations regarding AI use in dentistry. An 18-item questionnaire survey focused on demographics, expectancy, accountability, trust, interaction, advantages and disadvantages was responded to by 330 patients; 265 completed questionnaires were included in this study. Frequencies and differences between age groups were analysed using a two-sided chi-squared or Fisher’s exact tests with Monte Carlo approximation. Patients’ perceived top three disadvantages of AI use in dentistry were (1) the impact on workforce needs (37.7%), (2) new challenges on doctor–patient relationships (36.2%) and (3) increased dental care costs (31.7%). Major expected advantages were improved diagnostic confidence (60.8%), time reduction (48.3%) and more personalised and evidencebased disease management (43.0%). Most patients expected AI to be part of the dental workflow in 1–5 (42.3%) or 5–10 (46.8%) years. Older patients (> 35 years) expected higher AI performance standards than younger patients (18–35 years) (p

Abstract Aim To describe adults' health‐related experiences with chronic cough. Design Survey and interviews. Methods Participants completed questionnaires and interviews, to explore chronic cough's impact and management. Data Sources Patients aged 18–85 years with at least three cough‐related encounters within 56–120 days. Results Forty‐one patients were surveyed. Mean cough severity was 4.5 (scale 0–9). Chronic cough‐related problems included embarrassment (66%), fatigue (56%), and anxiety or depression (49%). Testing was judged insufficient by 44%. Only 28% were satisfied with treatment; 20% reported abandoning treatment due to ineffectiveness. Interview themes (N = 30) included frustration with diagnostic uncertainty, and feelings of therapeutic futility. Some reported psychological distress. Work and socializing were commonly disrupted. Conclusion Diagnostic uncertainty, perceived limitations of testing, and treatment failures suggest needs for better approaches to evaluating and treating chronic cough. Special attention to identifying and addressing mental health issues appears warranted.

Javier Dominguez-Ortega,1 Vicente Plaza,2 Antonio Nieto,3 Julio Delgado Romero,4 Julio Ancochea,5– 7 Natalia Mejia,8 Mariano Pastor,9 Marina Blanco-Aparicio10 1Department of Allergy, La Paz University Hospital, Institute for Health Research (IdiPAZ), Madrid, Spain; 2Department of Respiratory Medicine, Hospital de la Santa Creu i Sant Pau, Instituto de Investigación Biomédica Sant Pau, Barcelona, Spain; 3Pediatric Pulmonology and Allergy Unit, Hospital Universitari i Politècnic La Fe, Health Research Institute La Fe, Valencia, Spain; 4Allergology Clinical Management Unit, Hospital Virgen Macarena, Sevilla, Spain; 5Pneumology Department, Instituto de Investigación Sanitaria de La Princesa, Madrid, Spain; 6Pneumology Department, Facultad de Medicina, Universidad Autónoma de Madrid, Madrid, Spain; 7Centro de Investigación en Red de Enfermedades Respiratorias (CIBERES), Instituto de Salud Carlos III (ISCIII), Madrid, Spain; 8Medical Department, Novartis Farmacéutica, Barcelona, Spain; 9Fundación Española de Asociaciones de Pacientes Alérgicos y con Enfermedades Respiratorias (FENAER), Madrid, Spain; 10Pneumology Department, A Coruña University Hospital, A Coruña, SpainCorrespondence: Javier Dominguez-Ortega, La Paz University Hospital, Institute for Health Research (IdiPAZ), Madrid, Spain, Tel +34 616 719 390, Email javier.dominguez@salud.madrid.orgPurpose: ATLAS ASMA described the psychosocial impact of asthma on patients’ daily life from patients’ perspectives (in terms of impaired personal and intimate relationships, sleep quality, leisure time, daily activities, and others) in Spain. Secondary objective includes description of time since diagnosis, expectations, and satisfaction of patients about disease, treatment and medical assistance received, adherence to treatment, perceived control of asthma, and health-related quality of life.Patients and Methods: This was a cross-sectional, observational study, based on a self-administered online survey for adult patients (≥ 18 years) with asthma. Patients with asthma diagnosis of any type and severity who voluntarily participated in the survey through a web link were included consecutively. In the present manuscript, only adult patients’ data are included.Results: A total of 132 adults with asthma were included. Moderate/severe asthma constituted 59.1% of the patients (females 71.2%). Overall, most relevant areas affected due to asthma were leisure activities (67.0%) and the quality/quantity of sleep (52.3%). Moderate/severe patients perceived some degree of impairment in work, school, or at home due asthma more frequently vs mild patients (55.2% vs 10.9%). Poorly controlled asthma (ACT≤ 19) was reported in 41 (70.7%) and 10 (21.7%) moderate/severe and mild patients (p< 0.000), respectively. Mild patients obtained higher mean (SD) Mini-AQLQ score than moderate/severe asthma patients (5.6 [1.0] vs 4.3 [1.1], p< 0.000), likewise higher significant results for every individual dimension. Most patients cited little limitation to intense efforts (20.5%). Half of the patients mentioned needing more information about asthma. Topics those patients like to have more information were difficulties that may can have and legal topics (78.6%), asthma evolution (78.6%), secondary effects or issues related to the treatment (61.9%) and legal topics (61.9%).Conclusion: The study reported important insights on psychosocial impact of asthma on patients’ daily life from patients’ perspectives along with health determinants in asthma-related health outcomes, sociodemographic and psychosocial factors.Keywords: patient survey, psychosocial impact, health-related quality of life, healthcare resources utilization, Asthma Control Test, Mini-AQLQ

ObjectiveTo determine the impact of thyroid eye disease (TED) on patients in various stages of the disease.BackgroundTED is a debilitating and potentially sight-threatening inflammatory autoimmune disease that is frequently misdiagnosed. Challenging quality-of-life (QoL) issues can persist long after the active phase of disease has subsided.MethodsA 62-question survey was designed as a hypothesis-generating instrument to identify key issues confronting patients ≥18 years old with physician-diagnosed TED. Questions focused primarily on physical and emotional status, and QoL experiences in the 2 months prior to the survey. Data for individual questions are presented as summary statistics. Correlations between questions were determined using χ2 analyses.ResultsThe 443 respondents were 18 to >80 years old; >90% female, and >80% from the United States. Time since TED diagnosis ranged from 10 years. Participants provided >500 free-form responses describing experiences of living with TED. Physical signs/symptoms were experienced by 307/443 (69%) patients. Of those responding to the QoL questions (N = 394), 53 (13%) reported symptoms improving, 73 (19%) reported symptoms worsening, and 255 (65%) reported no change in the 2 months prior to the survey. The most bothersome signs/symptoms were dry/gritty eyes, light sensitivity, bulging eyes, and pressure or pain behind the eyes. Respondents 5 symptoms, had been diagnosed within the last 5 years, or were

Background: Understanding how patient-reported experiences of care and overall rating of care vary among patients with different characteristics is useful to help interpret results from patient experience surveys and design targeted improvement interventions. The primary objective of this paper was to identify the socio-demographic and health-related characteristics independently associated with overall rating of cancer care. The secondary objective was to explore if and how these characteristics were associated with specific experiences of cancer care. Methods: This cross-sectional multicenter study analyzed self-reported data collected from 2696 patients diagnosed with breast, prostate, lung, colorectal, skin, or hematological cancer from four large hospitals in French-speaking Switzerland. Multivariate logistic regressions with purposeful stepwise selection of independent variables were used to identify the socio-demographic and health-related characteristics independently associated with overall rating of cancer care in the primary analyses. In the secondary analyses, we ran the multivariate model from the primary analyses with specific experiences of care as outcomes to estimate the adjusted odds ratios (OR) and 95% confidence intervals (CI) of the selected characteristics. Results: Respondents' mean rating of overall cancer care was 8.5 on a scale from 0 to 10, with 17% categorized as reporting a low rating (0–7 rating). Being a woman (OR 1.43, 95% CI 1.12–1.83), not being Swiss (OR 1.47, 95% CI 1.12–1.94), reporting lower health literacy (OR 1.95, 95% CI 1.54–2.47), preferring making medical decisions alone (OR 1.92, 95% CI 1.38–2.67), having forgone care due to cost (OR 1.72, 95% CI 1.29–2.29), having used complementary medicine (OR 1.55, 95% CI 1.22–1.97), and reporting poorer health (OR 3.12, 95% CI 2.17–4.50) were all independently associated with a low rating of overall cancer care. Poorer health, lower health literacy, and having forgone care were the three characteristics most often associated with problematic experiences of care. Conclusions: Our results identified several patient characteristics consistently associated with lower overall rating of care and specific experiences of cancer care. Among these determinants, health literacy and financial hardship emerged as key recurring factors shaping poor patient experiences that should be prioritized for attention by cancer care services. [ABSTRACT FROM AUTHOR]

Aims Same-day discharge (SDD) following catheter ablation (CA) of atrial fibrillation (AF) was already introduced in selected facilities in Europe, but a widespread implementation has not yet succeeded. Data on patients' perspectives are lacking. Therefore, we conducted a survey to address patients' beliefs towards SDD and identify variables that are associated with their evaluation. Methods and results As part of the prospective, monocentric FAST AFA trial, patients aged ≥20 years undergoing left atrial CA for AF were asked to participate in the survey consisting of a study-specific questionnaire, the AF knowledge scale, and pre-defined patient-reported outcome measures. The study cohort was stratified based on SDD willingness, and a logistic regression analysis was used to identify predictors for patients' valuation. Between 26 July 2021 and 01 July 2022, 256 of 376 screened patients consented to study participation of whom 248 (mean age 61.8 years, 33.9% female) completed the SDD survey. Of them, 50.0% were willing to have SDD concepts integrated into their clinical course with increased patient comfort (27.5%), shorter waiting times (14.6%), and a cost-efficient treatment (14.0%) being imaginable benefits. In contrast, expressed concerns included uncertainties with occurring complaints (50.6%), the insufficient recognition (47.8%), and treatment (48.9%) of complications. European Heart Rhythm Association class at baseline and inpatient treatments within the preceding year were predictors for SDD willingness whereas comorbidity burden or AF knowledge were not. Conclusion We provide a detailed survey expressing patients' beliefs towards SDD following left atrial CA. Our findings may facilitate adequate patient selection to improve the future implementation of SDD programs in suitable cohorts. [ABSTRACT FROM AUTHOR]

The objective of this work was to explore the needs and expectations of the users of the Alexander Fleming Institute (IAF) regarding patient-oriented information systems, with the purpose of planning and prioritizing the implementation of improvements in the patient portal. The textual comments of patients who were treated at the institution between November 2021 and April 2022 and answered the satisfaction survey sent by IAF were analyzed using the content analysis technique. The results showed 6 main emerging issues: (1) the need for patients to have their clinical and administrative information in a single platform; (2) to have their clinical documentation available at the appropriate time; (3) to have clearer and more friendly information on preparation before diagnostic studies and (4) chemotherapy first time talks; (5) more accessible information on complementary treatments in the oncological context; (6) in-app appointment queue functionalities. The findings reported in this work served as an input to design an improvement plan for the patient portal and the institution's digital ecosystem. [ABSTRACT FROM AUTHOR]

Abstract Background Gaucher disease is a rare, autosomal recessive genetic disorder. It is caused by a lack of sufficient activity of the lysosomal enzyme known as glucocerebrosidase, which leads to an accumulation of glucocerebroside, a fatty substance, in the spleen, liver, bone marrow, and rarely, the lungs or central nervous system. While there are several treatments available for people with Type 1 Gaucher disease and the visceral aspects of Type 3 Gaucher disease, no cure is present for any type of Gaucher disease. Clinical trials are currently underway to investigate the safety and efficacy of gene therapy in Gaucher disease, which has the potential to become a new type of (curative) treatment in the future. Gene therapy is a relatively new therapeutic approach, and with the desire to keep the community informed about new treatment developments, the International Gaucher Alliance (IGA) set-up a Gaucher disease specific survey to gauge current perceptions. The survey aimed to benchmark understanding of, and the educational needs surrounding, gene therapy among the Gaucher disease community. Body An international, online survey was developed, comprising twelve questions ranging from multiple choice, Likert scale, single tick-box, ranking and open questions. The survey was developed following three patient and caregiver focus groups and underwent review from members of the IGA for readability and accuracy before going live to respondents. The survey was available for two months and shared to audiences via specific Gaucher community channels. Conclusion Over 100 patients and parents/caregivers from the Gaucher disease community completed the survey, including people living with Type 1 Gaucher disease (52.88%), people living with Type 3 Gaucher disease (3.85%), parents/caregivers of people living with Type 1, 2 or 3 Gaucher disease (39.42%), and other (3.85%) who were defined as parents of multiple people with Gaucher disease. The survey uncovered various commonalities in perception of gene therapy among all groups, with large knowledge gaps identified on the mode of action, the usefulness of gene therapy and overall understanding of the therapeutic area. This survey provides an overview of the type of information that could be valuable to the Gaucher disease community when developing educational materials.

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.

BackgroundDespite the recent expansion of treatment options in atopic dermatitis (AD), most management responsibilities fall on the patient and/or caregivers. Disease control often requires vigilance about and avoidance of common exposures, however the concerns for patients and caregivers living with AD have not been well enumerated.MethodsAn IRB approved survey was distributed to the public to evaluate the patient and caregiver concerns for topical exposures and potential triggers.Results323 people accessed the link to the survey with 259 providing response to at least one section of questions (response rate 80.2%). Results indicated that temperature and other weather related changes were the most common trigger. Nearly all respondents avoided at least one topical ingredient, with fragrances being the most common. Steroid exposure was common, however respondents expressed concerns about overall steroid exposure.ConclusionsOur results attempt to enumerate the daily topical exposure concerns for patients and caregivers living with AD. While our online survey is both limited and without mechanistic insights, our results provide insight to providers by highlighting the role of temperature in AD symptoms; identifying commonly perceived triggers; indicating the value of provider insight for topical product selection; and indicating that no specific aspect of topical corticosteroid exposure may alleviate the general steroid concerns for patients or caregivers.

The use of artificial intelligence (AI) in dentistry is rapidly evolving and could play a major role in a variety of dental fields. This study assessed patients' perceptions and expectations regarding AI use in dentistry. An 18-item questionnaire survey focused on demographics, expectancy, accountability, trust, interaction, advantages and disadvantages was responded to by 330 patients; 265 completed questionnaires were included in this study. Frequencies and differences between age groups were analysed using a two-sided chi-squared or Fisher's exact tests with Monte Carlo approximation. Patients' perceived top three disadvantages of AI use in dentistry were (1) the impact on workforce needs (37.7%), (2) new challenges on doctor–patient relationships (36.2%) and (3) increased dental care costs (31.7%). Major expected advantages were improved diagnostic confidence (60.8%), time reduction (48.3%) and more personalised and evidencebased disease management (43.0%). Most patients expected AI to be part of the dental workflow in 1–5 (42.3%) or 5–10 (46.8%) years. Older patients (> 35 years) expected higher AI performance standards than younger patients (18–35 years) (p < 0.05). Overall, patients showed a positive attitude towards AI in dentistry. Understanding patients' perceptions may allow professionals to shape AI-driven dentistry in the future. [ABSTRACT FROM AUTHOR]

SCAN, an online survey, measured access to diagnosis, treatments and monitoring of neuroendocrine tumor (NET) patients globally. Between September and November 2019, NET patients and healthcare professionals (HCPs) completed an online, semi‐standardized survey with 54 patient questions and 33 HCP questions. A total of 2359 patients with NETs and 436 HCPs responded. Misdiagnosis was common (44% [1043/2359]). Mean time to diagnosis was 4.8 years (standard deviation [SD], 6.2). Compared with global figures (60% [1407/2359]), the availability of 68Ga‐DOTA positron emission tomography (PET)/computed tomography (CT) was significantly lower in Asia (45% [126/280]) and higher in Oceania (86% [171/200]). HCPs reported that 68Ga‐DOTA PET/CT was free/affordable to fewer patients in Emerging and Developing Economies (EDE) than Advanced Economies (AE; 17% [26/150] and 59% [84/142], respectively). Compared with global data (52% [1234/2359]), patient‐reported availability of peptide receptor radionuclide therapy (PRRT) was significantly lower in Asia (31% [88/280]) and higher in Oceania (61% [122/200]). Significant differences were observed in average annual NET specialist costs between AE and EDE ($1081 and $2915, respectively). Compared with AE, patients in EDE traveled further for NET specialists (1032 [SD, 1578] and 181 [SD, 496] km, respectively). Patients and HCPs both recommended referral to HCPs that were more knowledgeable in the field of NETs and had better access to NET experts/specialist centers. National care pathways, enhancing HCP NET knowledge and ensuring effective diagnostics and access to appropriate treatments are crucial to improving patient survival and NET care worldwide. [ABSTRACT FROM AUTHOR]

Aim: To describe adults' health‐related experiences with chronic cough. Design: Survey and interviews. Methods: Participants completed questionnaires and interviews, to explore chronic cough's impact and management. Data Sources: Patients aged 18–85 years with at least three cough‐related encounters within 56–120 days. Results: Forty‐one patients were surveyed. Mean cough severity was 4.5 (scale 0–9). Chronic cough‐related problems included embarrassment (66%), fatigue (56%), and anxiety or depression (49%). Testing was judged insufficient by 44%. Only 28% were satisfied with treatment; 20% reported abandoning treatment due to ineffectiveness. Interview themes (N = 30) included frustration with diagnostic uncertainty, and feelings of therapeutic futility. Some reported psychological distress. Work and socializing were commonly disrupted. Conclusion: Diagnostic uncertainty, perceived limitations of testing, and treatment failures suggest needs for better approaches to evaluating and treating chronic cough. Special attention to identifying and addressing mental health issues appears warranted. [ABSTRACT FROM AUTHOR]

Radiotherapy is delivered almost exclusively by therapeutic radiographers/radiation therapist (RTTs). Patient's perspectives of RTTs affect levels of trust and confidence in the profession and can have a significant impact on overall radiotherapy experience. The study reports patients' perspectives of RTTs from their experience of undergoing radiotherapy. Four partner sites collaborated in this research and included Malta, Poland, Portugal, and the UK (lead site). A survey was developed to gather information from patients receiving radiotherapy or who had had radiotherapy within the previous 24 months. Participants ranked their responses to 23 statements relating to person-centred care on a 5-point scale of 1 (strongly disagree) to 5 (strongly agree). Mann–Whitney or Kruskal Wallis tests were applied to test differences in responses to 5 key statements for patient characteristics including gender, age group, diagnosis, country, time spent with RTTs and number of fractions remaining at survey completion. Three hundred and forty-seven surveys are included. Patients report a positive perception of RTTs (95.4% agree with 'I feel cared for'). Statistically significant differences in responses were found between gender, diagnosis, country, time spent with RTTs and fractions of radiotherapy remaining. Patients who had more time with RTTs and completed their surveys during radiotherapy had a more positive perception of RTTs. This study suggests that sufficient time with RTTs is key to ensuring a positive radiotherapy patient experience. RTTs being attentive, understanding, and informative are most predictive of a positive overall patient experience. Timing of survey completion can influence responses. Implications for practice. RTT education programmes should incorporate training on person-centred care at all levels. Further research into patient experience of RTTs is warranted. [ABSTRACT FROM AUTHOR]

Background: Patients received care over telemedicine during the COVID-19 pandemic, and their perspective is useful for hand surgeons. Methods: Online surveys were sent October-November 2020 to 497 patients who received telemedicine care. Questions were free-response and multi-item Likert scales asking about telehealth in general, limitations, benefits, comparisons to in-person visits, and opinions on future use. Results: The response rate was 26% (n = 130). Prior to the pandemic, 55% had not used telemedicine for hand surgery consultation. Patients liked their telemedicine visit and felt their provider spent enough time with them (means = 9/10). In all, 48% would have preferred in-person visits despite the pandemic, and 69% would prefer in-person visits once the pandemic concludes. While 43% had no concerns with telemedicine, 36% had difficulties explaining their symptoms. Telemedicine was easy to access and navigate (M = 9/10). However, 23% saw telemedicine of limited value due to the need for an in-person visit soon afterward. Of these patients, 46% needed an in-person visit due to inadequate physical examination. Factors that make telemedicine more favorable to patients included convenience, lack of travel, scheduling ease, and time saved. Factors making telemedicine less favorable included need for in-person examination or procedure, pain assessment, and poor connectivity. There was no specific appointment time the cohort preferred. Patient recommendations to improve telemedicine included decreasing wait times and showing patient queue, wait time, or physician status online. Conclusions: Telemedicine was strongly liked by patients during the COVID-19 pandemic. However, nearly 70% of patients still preferred in-person visits for the future. [ABSTRACT FROM AUTHOR]

Background: Waiting time (WT) is commonly measured via both computerized systems and patient surveys. Comparison between these types of data can reveal important issues about the relationship between self-reported survey data and objective administrative measurement of WT. Aim: To compare national wait time data from two sources: patients' reported waiting time for community specialist appointments in Israel, with waiting time calculated from computerized administrative data, across specialties and geographic areas. Methods: Median WT for > 1 million appointments from over 6,000 physician practices in 5 specialties (ophthalmology, gynecology, otolaryngology, orthopedics, dermatology) were computed via an algorithm, for "specific" and "any" physician in the region, in December 2018. Results were compared with WT reported in a representative national sample survey of 3508 adults during August-December 2018. Results: Similar trends in WT were seen using both methods, with the longest wait times in dermatology, and in the Southern region. Correlation between survey and administrative data was high (r = 0.9, p < 0.01), with greater correlation for specific compared to any physician scenario. Survey respondents reported longer waiting times compared to administrative data. Conclusions: Patient survey data reflected trends in waiting time for community specialists derived from objective administrative data. Routine computation of WT from administrative data can save time and resources invested in patient surveys and provide a continuous, accurate and timely evaluation of trends. Surveys can provide deeper understanding of patient experience. Alternate use of both platforms provides a better understanding of access to care. [ABSTRACT FROM AUTHOR]

Background: Gaucher disease is a rare, autosomal recessive genetic disorder. It is caused by a lack of sufficient activity of the lysosomal enzyme known as glucocerebrosidase, which leads to an accumulation of glucocerebroside, a fatty substance, in the spleen, liver, bone marrow, and rarely, the lungs or central nervous system. While there are several treatments available for people with Type 1 Gaucher disease and the visceral aspects of Type 3 Gaucher disease, no cure is present for any type of Gaucher disease. Clinical trials are currently underway to investigate the safety and efficacy of gene therapy in Gaucher disease, which has the potential to become a new type of (curative) treatment in the future. Gene therapy is a relatively new therapeutic approach, and with the desire to keep the community informed about new treatment developments, the International Gaucher Alliance (IGA) set-up a Gaucher disease specific survey to gauge current perceptions. The survey aimed to benchmark understanding of, and the educational needs surrounding, gene therapy among the Gaucher disease community. Body: An international, online survey was developed, comprising twelve questions ranging from multiple choice, Likert scale, single tick-box, ranking and open questions. The survey was developed following three patient and caregiver focus groups and underwent review from members of the IGA for readability and accuracy before going live to respondents. The survey was available for two months and shared to audiences via specific Gaucher community channels. Conclusion: Over 100 patients and parents/caregivers from the Gaucher disease community completed the survey, including people living with Type 1 Gaucher disease (52.88%), people living with Type 3 Gaucher disease (3.85%), parents/caregivers of people living with Type 1, 2 or 3 Gaucher disease (39.42%), and other (3.85%) who were defined as parents of multiple people with Gaucher disease. The survey uncovered various commonalities in perception of gene therapy among all groups, with large knowledge gaps identified on the mode of action, the usefulness of gene therapy and overall understanding of the therapeutic area. This survey provides an overview of the type of information that could be valuable to the Gaucher disease community when developing educational materials. [ABSTRACT FROM AUTHOR]

Rationale: Funding for obstructive sleep apnea (OSA) treatment may impact how patients access care, wait times, and costs of care. Objectives: The aim of this study was to compare differences in diagnosis and treatment of OSA between Canadian jurisdictions with and without public funding for continuous positive airway pressure (CPAP). Methods: We administered an anonymous internet survey to Canadian adults reporting a physician diagnosis of OSA. Responses were categorized on the basis of whether the respondent's province provided full or partial funding for CPAP therapy for all patients. We assessed wait times for diagnosis and treatment, patient-borne costs, and model of care delivery compared between jurisdictions with and without universal CPAP funding. Results: We received 600 responses representing all Canadian provinces and territories. The median (interquartile range) age was 59 (49-66) years; 57% were male, and 21% were from rural settings. Patients living in provinces without public CPAP funding (n = 419) were more likely to be diagnosed using home sleep apnea testing (69% vs. 20%; P = 0.00019). Wait times were similar after adjustment for demographics, disease characteristics, and model of care. Although patient-borne costs of care were similar between jurisdictions, patients from regions without CPAP funding reported that cost had a greater influence on the choice of therapy. Sleep specialists were more commonly involved in OSA care in regions with CPAP funding. There was no difference in the current use of therapy between jurisdictions with and without public funding. Conclusions: This survey study demonstrates that public funding for CPAP therapy impacts how Canadians access OSA care but is not associated with differences in wait times or costs. Future research is required to determine the impact of different funding models for OSA care on clinical outcomes. [ABSTRACT FROM AUTHOR]

Introduction: The abuse potential of opioids and other controlled substances is well-known; however, reports of noncontrolled prescription medication (NCPM) misuse deserves further attention. Whereas several studies investigate patterns, motivations, and biochemical mechanisms underlying the misuse potential of NCPM, the clinical significance of NCPM misuse is not well-understood. The primary objectives of this project were to identify prescriber perceptions of NCPM misuse and evaluate patient reported patterns of misuse through survey responses. Methods: Adult patients admitted to psychiatry services and prescribers working in psychiatry or on a general medicine service during the study time frame were invited to participate. Surveys were collected anonymously for both patients and prescribers. Results: NCPM misuse was reported by 38.4% of patients. Trazodone (35%) and quetiapine (30%) were most commonly reported as being misused. Opioid (24.1% vs 4.3%; P = .023) and cannabis use disorders (13.8% vs 0%; P = .019) were reported more frequently in patients who misuse NCPM, whereas no difference was seen for other SUDs (P > .05). There was no difference between psychiatric and general medicine prescribers regarding familiarity with NCPM misuse (n = 21 [87.5%] vs n = 13 [81.3%]; P = .668). Discussion: High rates of NCPM misuse were seen in this patient population. Our findings confirm previous reports of quetiapine misuse and also reveal that trazodone is frequently misused. Based on the observations in this study, the misuse of NCPM is identified as prevalent and noteworthy at our institution, warranting provider education and future studies.

Background: Cushing’s syndrome (CS) is a rare condition of chronically elevated cortisol levels resulting in diverse comorbidities, many of which endure beyond successful treatment affecting the quality of life. Few data are available concerning patients’ experiences of diagnosis, care and persistent comorbidities. Objective: To assess CS patients’ perspectives on the diagnostic and care journey to identify unmet therapeutic needs. Methods: A 12-item questionnaire was circulated in 2019 by the World Association for Pituitary Organisations. A parallel, 13-item questionnaire assessing physician perceptions on CS patient experiences was performed. Results: Three hundred twenty CS patients from 30 countries completed the questionnaire; 54% were aged 35–54 and 88% were female; 41% were in disease remission. The most burdensome symptom was obesity/weight gain (75%). For 49% of patients, time to diagnosis was over 2 years. Following treatment, 88.4% of patients reported ongoing symptoms including, fatigue (66.3%), muscle weakness (48.8%) and obesity/weight gain (41.9%). Comparisons with delay in diagnosis were significant for weight gain (P = 0.008) and decreased libido (P = 0.03). Forty physicians completed the parallel questionnaire which showed that generally, physicians poorly estimated the prevalence of comorbidities, particularly initial and persistent cognitive impairment. Only a minority of persistent comorbidities (occurrence in 1.3–66.3%; specialist treatment in 1.3–29.4%) were managed by specialists other than endocrinologists. 63% of patients were satisfied with treatment. Conclusion: This study confirms the delay in diagnosing CS. The high prevalence of persistent comorbidities following remission and differences in perceptions of health between patients and physicians highlight a probable deficiency in effective multidisciplinary management for CS comorbidities.