Patient Priorities Research Articles

Patient and OBGYN Perspectives on Considering Long-Acting Reversible Contraception for Postpartum Patients Who Desire Permanent Contraception

Objective(s)We sought to understand patients’ and obstetrician-gynecologists’ priorities in seeking or recommending long-acting reversible contraceptive methods (LARC; intrauterine devices and contraceptive implants) versus permanent contraception in the postpartum period when permanent contraception was the patient’s initial contraceptive preference. Study DesignWe interviewed 81 postpartum patients who desired permanent contraception and their delivering obstetrician-gynecologist (n=67) from four U.S. institutions to explore patient and OBGYN perspectives navigating permanent contraception counseling and decision-making. We used thematic content analysis to analyze interview transcripts using NVivo 12 Pro software. ResultsOur analysis revealed a mismatch between patient and OBGYN priorities when considering permanent contraception versus LARC. Many OBGYNs in our study described a preference for LARC methods over permanent contraception and often prioritized factors such as reversibility and menstrual suppression. However, many patients sought permanent contraception for reasons that were not adequately addressed by LARC methods such as method permanence, desire to avoid menstrual suppression, cancer prevention, prior negative experiences with LARC, and a preference to avoid a foreign body. Conclusion(s)These results suggest that priorities in selecting a preferred contraceptive method may sometimes not be aligned between patients and clinicians and that LARC methods may not always be an acceptable alternative for patients who desire permanent contraception. The findings from this study highlight the importance of eliciting and centering a patient’s goals and desires for pursuing permanent contraception during contraceptive counseling. Clinicians should be aware of the various perspectives and values patients have on these methods and include them in patient-centered share decision-making.

The impact of dentofacial characteristics and malocclusions on dissatisfaction with dentofacial appearance.

To assess how, and to what extent, dentofacial features and malocclusions affect the perceived dissatisfaction with the appearance of dentofacial region in different age groups. Dissatisfaction with dental appearance (DDA) and facial appearance (DFA) of 430 patients were assessed using self-reported 5-point Likert scores (1: very satisfied - 5:very dissatisfied). Number of decayed, filled, and missing teeth, oral hygiene status, crowding in the upper/lower arches, molar relationship, overjet, overbite, posterior-crossbite, upper/lower midline deviations, face type, profile, nasal tip and chin deviations were assessed by an experienced orthodontist. Ordinal logistic regression analysis was performed to determine how the examined variables affected DDA and DFA scores. The median age of the 430 patients (271 female, 159 male) was 23.0 years. 60.9% of the patients had Angle Class I, 32.3% had Angle Class II, and 6.7% had Angle Class III molar relationship. According to the IOTN (DC), 37.4% of the patients had grade 4 and grade 5. Gender had no impact on DDA and DFA. Being young (teenagers OR = 4.78, CI:2.43-9.40, young adults (OR = 3.15, CI: 1.70-5.83), having poor oral hygiene (OR = 2.32, CI: 1.37-3.92), missing teeth (OR = 1.19, CI:1.10-1.29), convex profile (OR = 1.94, CI:1.03-3.67), diastema (OR = 3.18, CI:1.33-7.61), crowding in the upper arch (moderate: OR = 2.10, CI:1.30-3.68, severe: OR = 5.94, CI:3.15-11.19) affected the DDA scores negatively. Class III malocclusion (OR = 5.60, CI:1.85-16.91), decreased overbite (OR = 2.44, CI:1.21-4.89), and increase in DDA scores (OR = 1.88, CI: 1.50-2.35) all increased the DFA scores. Certain dentofacial characteristics and age of the patients significantly affect self-reported dissatisfaction with dental and facial appearance levels, with varying degrees of severity. Awareness of the impacts of malocclusions and dentofacial features that result in patient dissatisfaction among those who apply for dental treatment at the clinic enables a deeper understanding of the patient's priorities, expectations from orthodontic treatment, and satisfaction with the outcome.

A core outcome set for prophylaxis and perioperative treatment of von Willebrand disease: The coreVWD initiative.

Treatment options are expanding for von Willebrand disease (VWD). A core outcome set (COS)-a minimum set of agreed-upon outcomes to be used in every clinical trial for a given condition-provides guidance on which outcomes are most important to measure to ensure necessary data is collected for a variety of stakeholders and enable comparison across products and trials. coreVWD aimed to develop a COS for trials for prophylaxis and perioperative treatments for VWD. A modified Delphi consensus process was used to condense/prioritize a long list of potential outcomes. Over three Delphi rounds, a multi-stakeholder panel (patients, clinicians, pharmaceutical company representatives, HTA organizations, payer, and government organization representatives) rated each outcome from 1 (not important to include in a COS) to 9 (essential to include). Outcomes were eliminated or retained based on pre-determined criteria; a special provision to elevate patient priorities was included. An in-person consensus meeting was held after Delphi round 2. Thirty-nine panellists participated. The final COS for prophylaxis treatment included 18 outcomes, seven of which are part of a special subset selected for women, girls and people with the potential to menstruate. There were 11 outcomes in the final perioperative branch COS. Six outcomes overlapped both COS. The coreVWD COS represents a consensus list of outcomes for clinical trials for both factor and non-factor VWD therapies. These outcomes will be useful across the lifecycle of a product, from clinical development through regulatory and market access phases and into patient-provider decision-making.

Patient-reported outcome measures-use in diagnosing depression, anxiety, and stress

Patient-reported outcome measures (PROMs) is an umbrella term for various self-report instruments used to assess subjective health-related impressions and treatment success from the patient's perspective. In psychosomatic medicine, PROMs are often used to record subjective symptoms, psychosocial distress, and changes in health status, particularly in patients with comorbid (affective) disorders and frequent contact with physicians, but also in preventive health care and to monitor the effectiveness of treatment. In otolaryngology (ENT), self-report questionnaires (PROMs) are used, among other things, to assess the impact of hearing, speech, swallowing, and breathing disorders on patients' quality of life. Such scientifically validated tools make it possible to better understand the needs and priorities of patients and to integrate them into clinician-patient communication and treatment to promote individual, patient-centered care. Three dimensions for the assessment of subjective health-related experiences (depression, anxiety, stress) with corresponding instruments for the German-speaking area for use in clinical and research settings are presented in more detail, specifically for otolaryngology.

A landscape review to identify what matters to patients with thrombotic cardiovascular diseases and patient-reported outcome instruments which can be used to capture the patient experience.

Thrombotic cardiovascular diseases profoundly impact patients' health-related quality of life (HRQoL). However, patient-reported outcome (PRO) instruments that are disease-specific or antithrombotic-treatment focused, developed according to US Food and Drug Administration (FDA) guidance on PROs, and can be used in clinical trials, are lacking. The aim of this study was to understand concepts important to patients diagnosed with coronary artery disease (CAD) or acute coronary syndrome (ACS), atrial fibrillation (AF), or stroke who require antithrombotic treatment for reducing risk of future thrombotic events (indications being evaluated for an investigational new drug), identify PROs that measure relevant symptoms and impacts, and determine acceptability of PROs from a health technology assessment (HTA) perspective. A landscape review, conducted between January 2009 and October 2020, included a search of qualitative literature (OVID), a review of PRO instruments using multiple sources (e.g., OVID and clinical trials databases), and a survey of HTA decisions for antithrombotic medications. The qualitative literature review identified 27 publications used to develop a high-level conceptual summary of symptoms and HRQoL impacts reported by patients. The instrument landscape review indicated that generic PROs have been utilized for thrombotic indications, but disease-specific, fit-for-purpose instruments are lacking, and the HTA review revealed that although HTA agencies discussed PRO instruments, evidence of specific recommendations was not found. To ensure patients' experiences, perspectives, and priorities are incorporated into drug development and evaluation, a core set of PROs for thrombotic indications that meet health authority guidance and are acceptable to HTA agencies is needed.

Patient Preferences in Cochlear Implant Manufacturer Selection.

To assess the factors that drive a patient's selection of cochlear implant (CI) manufacturer. Prospective survey study. Tertiary referral center. One hundred twenty-eight adult patients undergoing primary CI. Survey administered in the preoperative area. Sources of information regarding CI manufacturer offerings, factors that were most important in deciding on a manufacturer, and manufacturer ultimately selected. One hundred twenty-eight patients were included (average age, 63.7 years; 97% White). The most cited source of information that patients used to choose a device was his/her audiologist (80.5% of patients). When asked his/her number 1 reason for choosing their CI manufacturer, the most commonly cited reason was technology (e.g., battery life, device pairing), regardless of manufacturer. When asked about specific technology offerings, hearing aid pairing was rated as the most important. The numbers 2 and 3 reasons for choosing a manufacturer were cosmetics/structure of the wearable portion of the device and audiologist recommendation of that manufacturer, respectively. The relative weight given to each of the top 3 reasons differed significantly across the three manufacturers (p = 0.017). Audiologists are by far the leading source of information used by patients choosing a CI manufacturer. Patients prioritize technology most when choosing an implant manufacturer, but audiologist recommendation and the cosmetics and structure of the wearable device are also important. CI manufacturers should be mindful of patient priorities when designing and marketing their devices.

Discordance Between Caregiver and Transplant Clinician Priorities Regarding Post-Heart Transplant Education.

Patient and caregiver education following pediatric heart transplant (HTx) is a cornerstone of post-HTx care. Despite the importance of post-HTx education, there are no standardized guidelines for topics and content. Education practices vary across clinicians and centers. Patient and caregiver priorities regarding post-HTx education are unknown. This national survey study aimed to characterize adolescent HTx recipient, caregiver, and clinician values specific to post-HTx educational topics. A cross-sectional, national electronic survey was performed. Eligible participants included pediatric HTx recipients between the ages of 13-18, adult caregivers of pediatric HTx recipients, and pediatric HTx clinicians. An investigator-designed survey was developed to assess the importance of 20 educational topics. Average scores on educational topics were compared between HTx recipients/caregivers and HTx clinicians using two-sample t-tests. 120 survey responses were included, with a majority completed by HTx caregivers (N = 73; 61%) and clinicians (N = 43; 36%). Of the 20 educational topics assessed, there was a significant difference (p < 0.05) between educational values of HTx recipients/caregivers compared to HTx clinicians for 40% (N = 8) of the topics. For each educational topic that revealed a significant difference, HTx recipients/caregivers consistently placed greater value on the educational topic compared to HTx clinicians. Priorities regarding post-HTx education do not always align between HTx recipients/caregivers and HTx clinicians. Results suggest that HTx recipients/caregivers place higher value on educational topics regarding daily life after HTx compared to HTx clinicians. We hope these findings better inform the approach to post-HTx education and care for future pediatric HTx patients.

Generic vs. Disease-Specific Patient Reported Outcome (PRO) Instruments for Assessing HRQoL Burden Among Patients Diagnosed with Alopecia Areata: Evidence from TARGET-DERM AA

Introduction Alopecia areata (AA) is a chronic, autoimmune disease characterized by patchy hair loss. Compared to other disease areas, recent work has signaled a potential shortcoming, that generic quality of life (QOL) questionnaires are not sufficiently sensitive to the impact of AA disease severity. This cross-sectional analysis investigates the Short-Form 36, the dermatology life quality index (DLQI), and the Alopecia Areata Patient Priority Outcomes (AAPPO) for similar shortcomings. Methods Patients of all ages enrolled from December 2021 to June 2024 in TARGET-DERM AA (data collection on-going) in the United States and Canada were grouped by Severity of Alopecia Tool (SALT) score (1-20, 21-49, or 50-100). At enrollment, patients completed the AAPPO and DLQI questionnaire as well as the RAND MOS Short-Form 36. The SF-36 has 8 subdomain scores (vitality, physical function, bodily pain, general health, physical role function, emotional role function, social role function, mental health) along with the physical component summaries (PCS), mental component summaries (MCS), and the SF-6D utility index score. The Kruskal-Wallis test compared differences in mean scores across SALT subgroups defined by severity. Results Of the 141 AA patients, 61.7% were female; 95.0% adults, and 67.4% Non-Hispanic White. When comparing the SALT 1-20 and the &gt;50 subgroups, significant differences in SF-36 derived mean scores were only observed in the PCS and the physical function score (p&lt;0.05). None of the other scores (MCS, SF-6D, or other SF-36 subdomains) showed any differences. Mean DLQI scores were similar across subgroups (p&gt;.05) Notably, the hair loss and activity limitation domains of the AAPPO demonstrated significant differences between the patient subgroups (p&lt;.0001 and p&lt;.05, respectively) Discussion In this real-world cohort, generic QoL instruments, namely the SF-36 and DLQI, did not capture differences in the underlying health-related QoL burden of AA patients with different AA severity. Such differences were clear when HRQoL was measured for AA patients with mild hair loss AAPPO.

LUTS in Older Adults: Definitions, Comorbidity Impact, Patient Priorities, and Treatment Strategies for Managing Daytime and/or Nighttime Symptoms - ICI-RS 2024.

Lower urinary tract symptoms (LUTS) are prevalent among older adults, a population that faces multiple medical challenges, with frailty being a major concern. Despite the high prevalence of LUTS, current treatment strategies for older adults are often inadequate. This paper aims to address these issues by defining daytime and/or nighttime LUTS and examining the impact of comorbid conditions on these symptoms. We will identify the priorities of older patients regarding LUTS management and propose treatment strategies to improve outcomes in this vulnerable population. This review is based on discussions at the ICI-RS 2024 meeting in Bristol, UK, alongside an extensive literature review examining LUTS in older adults. The review explores distinctions between daytime and nighttime symptoms, the impact of frailty, patient priorities, treatment strategies and the role of comorbidities. LUTS in older adults present a complex and multifaceted challenge, with notable differences between daytime and nighttime manifestations, which may coexist. Clear definitions are needed. There is a lack of evidence that treating associated comorbidities will improve LUTS or urinary incontinence. Personalized care approaches, integrated into broader geriatric health strategies, are essential for addressing these symptoms. An ideal treatment strategy is proposed, focusing on daytime, nighttime or combined day- and nighttime LUTS. Further research is needed to refine treatment pathways and optimize outcomes for this population. A comprehensive, individualized approach is necessary to address LUTS in older adults. Future research should focus on refining diagnostic definitions, exploring the interplay between comorbidities and LUTS, and developing patient-centered treatment strategies that account for both daytime and nighttime (or combined) symptoms.

"None of us asked to be in this community." Understanding nephrotic syndrome through TikTok: patient and caregiver perspectives.

TikTok, a popular social media platform, is increasingly used for health information dissemination; however, the accuracy and quality of medical content remain uncertain, including in the context of nephrotic syndrome (NS). This study aims to identify prominent patient and caregiver experiences with NS on TikTok and demonstrate how they may vary. A convenience sample of TikTok videos containing the hashtag "nephrotic syndrome" posted between July 1, 2020, and February 29, 2024, was analyzed. Videos underwent cyclical and inductive coding, followed by content and discourse analysis to identify common themes and narratives. One hundred twenty-three videos were included in the analysis. 62.6% of videos (N = 77) consisted of caregivers sharing their experiences of their child's disease. Three prominent topics included: (1) navigating healthcare and managing illness, where users shared their disease journeys; (2) emotional and physical wellbeing, where caregivers focused on physical disease signs while patients highlighted the mental health toll of the illness; and (3) education, awareness, and support systems, where users shared feelings of social isolation post-diagnosis. The discourse analysis revealed language portraying patients as "warriors," reflecting the resiliency promoted by TikTok support systems. We uncovered a hidden disease burden associated with NS that affects everyday life, reinforcing the importance of the journey and stress patients and caregivers experience outside of the clinician's office. Our findings also highlight that patient priorities may differ from those reported by caregivers, particularly in pediatrics. TikTok may also be an outlet for feelings of isolation and community-building within NS.

Evaluating the impact of work from home policies on Google search Trends related to ankle surgery during the COVID-19 pandemic.

The COVID-19 pandemic caused notable shifts in healthcare behavior, influenced by remote work policies. This study examines the impact of Work from Home (WFH) policies on public interest in ankle-related orthopaedic surgeries, utilizing Google search trends. Understanding these trends is crucial for healthcare providers, enabling them to adapt services and communication to evolving patient needs during challenging times. To comprehend variations in search volume and trends for ankle-related queries due to WFH policies during the COVID-19 pandemic. Ankle-related terms accessible to laypersons were analyzed using Google Trends data from March 2018 to March 2022 in the United States. Data were divided into pre-pandemic (March 2018-March 2020) and post-pandemic (March 2020-March 2022) periods. Weekly search interest data for 20 terms were analyzed using a Mann-Whitney U test. The study aimed to identify significant changes in search interest, providing insights into public information-seeking behavior concerning ankle surgeries. Among the 20 terms analyzed, 11 exhibited significant changes. Ankle arthritis and ankle bursitis showed increased interest, suggesting heightened concern during the pandemic. Conversely, post-pandemic interest decreased for terms 9 terms, including ankle pain and ankle tendonitis, indicating reduced worry. Moderate declines were noted for ankle gout, Achilles tendonitis, and heel bursitis, reflecting shifting patient priorities. Some terms, including ankle fracture and ankle arthroplasty, showed stable information-seeking behavior despite the pandemic. The study underscores the nuanced impact of WFH policies on public interest in ankle-related orthopaedic surgeries. Varied search trends highlight changing patient concerns. Healthcare providers can use these insights to tailor services effectively, meeting evolving patient needs and enhancing communication strategies.

Improving Collaborative Management of Multiple Mental and Physical Health Conditions: A Qualitative Inquiry into Designing Technology-Enabled Services for Eliciting Patients' Values

People with multiple chronic conditions (MCC) face challenges planning health care collaboratively with primary care clinicians, particularly when their priorities conflict. These challenges intensify with symptoms of anxiety or depression. Elicitation of patients' values is promoted as a means to aligning patient and clinician priorities in primary care, and as a component of psychotherapy for anxiety and depression. But, these approaches remain siloed. We conducted a qualitative interview study to understand patients' preferences for Technology Enabled Services (TESs) to coordinate values elicitation across primary and mental health care settings. Many participants preferred face-to-face elicitation by a mental health clinician; some preferred elicitation via telehealth and some preferred self-directed elicitation. Participants' preferences were influenced by: 1) how they perceived the rationale and benefits of values elicitation; 2) how they perceived the training and credibility of people facilitating elicitation; and 3) how they perceived their own capacity to engage in values elicitation. Participants also shared numerous concerns about values elicitation that warrant critical examination of TESs to support it.

Evaluating the Importance of Return to Sports and Hamstring Strength in a Discrete Choice Experiment for Anterior Cruciate Ligament Injury.

With emerging treatments for anterior cruciate ligament (ACL) injury, analysis of patient preferences is lacking to align clinical care and research with patient priorities. To identify patient priorities for outcomes after surgical intervention if they were to sustain an ACL tear, analyze what outcome measures influenced preferences, and determine whether patient demographics influenced preferences. Cross-sectional study. The authors screened patients aged 18 to 30 years who presented for upper extremity complaints to a single institution in 2023. Patients were excluded for current lower extremity injury or history of a knee injury requiring surgical consultation. The authors designed a discrete choice experiment through literature review of outcome measures for bridge-enhanced ACL restoration (BEAR) and ACL reconstruction (ACLR) with hamstring tendon autograft. Measures included return to sports, risk of arthritis, risk of reinjury, and hamstring strength. Patients chose surgery A (ACLR with hamstring tendon autograft) or surgery B (BEAR) and then rated the importance of each outcome measure on their selection. In total, 100 participants (36 female; mean age, 25.1 ± 4.0 years) completed the discrete choice experiment. Overall, 56.0% participated in sports and 80.0% were employed. Based on surgery choice group, there were no significant differences in sex, age, Marx Activity Scale score, sports participation, or employment status between patients who selected BEAR or ACLR with hamstring tendon autograft (all P > .361). Return to sports and hamstring strength were significant priorities for patients in procedure selection (P ≤ .011). Of the patients who selected ACLR with hamstring tendon autograft, 31.6% would not elect to undergo this procedure. In this discrete choice experiment of adults without prior ACL injury, return to sports and hamstring strength were identified as patient priorities when selecting a procedure for ACL injury. Risk of reinjury, however, was not a significant factor in procedure selection. Importantly, these priorities were maintained regardless of patient characteristics, activity level, or employment status.

Theoretically informed codesign of a tailored intervention to support pressure ulcer prevention behaviours by older people living in their own homes in the UK and their lay carers: an intervention codesign study (C-PrUP)

ObjectiveTo codesign a theoretically underpinned, healthcare practitioner-mediated, tailored intervention to support housebound older patients and their lay carers to adopt pressure ulcer prevention behaviours.DesignTheoretical domains framework informed codesign.SettingOne geographical area...

Mild Asthma- What Matters to Patients and Parents

BackgroundMild asthma has received less attention despite accounting for the majority of asthma patients. However, asthma complications including hospitalizations and progressive loss of lung function frequently occur in such patients. The priorities of mild asthma patients are unknown, hindering the ability to advance care. ObjectiveTo identify patient and parent perspectives on the definition of mild asthma, treatment preferences, concerns and goals of care. MethodsParticipants with self-defined mild/intermittent asthma were recruited using emails distributed through the Allergy & Asthma Network (AAN) and Allergy Foundation of America (AAFA). A demographic survey and measures of asthma control/quality of life were completed. Focus groups consisting of approximately 5 participants and a focus group leader were conducted. ResultsA total of 20 patients and 20 parents of children with mild asthma participated. Focus groups revealed significant variability in the definition and treatment preferences. Frequency of symptoms appears to be a key driver in treatment decisions for mild asthma, and those with infrequent symptoms were opposed to the addition of an inhaled corticosteroid to albuterol. Use of recommended asthma monitoring strategies such as asthma action plans or peak flow meters was low among adults. Participants desired more education from their providers regarding asthma remission and long-term complications associated with mild asthma. ConclusionThere is significant heterogeneity in the definition and treatment preferences among patients and parents of those with mild asthma. Shared decision making between patients and providers is necessary to personalize medical decisions in those with mild asthma.

Patient-reported and Clinical Outcomes following Gender-affirming Chest Surgery: A Comparison of Binary and Nonbinary Transmasculine Individuals.

Nonbinary individuals assigned female at birth are increasingly presenting for gender-affirming chest surgery (GCS). However, little is known about psychosocial outcomes in this group. We compare patient-reported and clinical outcomes after GCS between nonbinary and binary transmasculine individuals who underwent GCS. We performed an institutional retrospective chart review. Demographic information, medical comorbidities, history of gender-affirming medical care, operative details, and complications were collected and compared between nonbinary and binary patients. Two validated patient-reported outcomes measures, the Gender Congruence and Life Satisfaction (GCLS) scale and the chest dysphoria measure were administered postoperatively. A total of 281 patients were included, of which 40.6% (114) identified as nonbinary and 59.4% (167) identified as binary transgender men. Fewer nonbinary patients used testosterone (P < 0.001). Nonbinary patients underwent a wider variety of masculinizing chest operations than binary patients, with fewer nonbinary patients electing for free nipple-areolar complex grafts (P < 0.001) and more nonbinary patients undergoing breast reduction (P = 0.001). A total of 137 (48.7%) patients responded to postoperative surveys. Nonbinary and binary respondents had comparable scores on the overall GCLS (P = 0.86), GCLS chest subscale (P = 0.38), and chest dysphoria measure (P = 0.40). The absence of nipple-areolar complex grafts was associated with higher GCLS chest scores (P = 0.004). Nonbinary individuals have similarly positive outcomes following GCS compared with binary individuals. Surgeons should be aware of greater medical and surgical heterogeneity in this population and seek to understand individual patients' goals and priorities.

Development of a core outcome set for recurrent acute and chronic pancreatitis: Results of a Delphi poll

Background/objectiveRecurrent acute pancreatitis (RAP) and chronic pancreatitis (CP) lack effective therapies. There is no consensus or guidance on which endpoints or outcome measures should be used in clinical trials. This study aimed to develop a core outcome set aligned with both patient and provider priorities for RAP and CP. Utilizing the Outcomes Measures in Rheumatology (OMERACT) framework, a multi-stakeholder approach was adopted to identify and prioritize outcome domains. MethodsA two-round Delphi poll was conducted among four stakeholder groups: adult patients, parents and pediatric patients, adult health care providers and pediatric health care providers. Steering committee consensus further refined the core outcome domains, categorizing them as mandatory, important but optional, or research agenda domains, with full consensus achieved. ResultsPain severity, ability to participate in social roles and activities, pancreatitis related hospitalization/ER visits and acute pancreatitis flare-ups were recommended as mandatory outcome domains for future clinical trials in RAP/CP. ConclusionsUsing the OMERACT framework, we developed a core outcome set for RAP and CP. Future research will focus on identifying validated measures for each domain, facilitating standardized assessments across clinical trials.

Pregnancy care experiences for adults with congenital heart disease in the United States

BackgroundResearch to reduce maternal morbidity due to cardiovascular disease is vitally important in the United States, especially for the growing number of individuals with congenital heart disease (CHD) reaching childbearing age. Understanding patient experiences through patient engagement is critical to designing research that is aligned with the needs of adults with CHD undergoing pregnancy. MethodsThis patient engagement project, grounded in human centered design, focuses on the discovering patient and healthcare provider priorities for reducing maternal morbidity in CHD through patient centered outcomes research (PCOR). In this first stage, a capacity building consortium of over 90 key partners, including patients, advocates, healthcare providers, and researchers, was assembled. Baseline education on patient engagement, PCOR, and survey instrument design was delivered virtually. Two questionnaires were designed to elicit tacit knowledge – one for patients and one for providers – regarding gaps and needs across four key pillars: access to clinical care, patient and provider education, mental health, and research opportunities. The pillars were determined through thematic summaries from consortium discussions. ResultsThe patient questionnaire received 828 responses (age range: 18-60 years) from 48 U.S. states. The provider questionnaire garnered 218 responses from professionals. Several common themes for areas of research were observed across all pillars including improved access to specialized cardio-obstetric care and improved education about the need for specialized care. Healthcare providers cited insufficient care coordination models and resources as a major barrier to providing effective clinical care. Both patients and providers expressed a need for improved access to mental health care. While only 28% of patient respondents who underwent a pregnancy reported a pre-existing mental health diagnosis, nearly 2/3 reported having significant anxiety symptoms related to their pregnancy. Of those with significant symptoms, 44% were unable to access mental health services. Additionally, only 55% of healthcare providers reported referral for assessment and treatment if mental health concerns arose during or after pregnancy. ConclusionThe results provide valuable insights into the unique challenges faced by patients with CHD and their providers during pregnancy. By addressing the identified gaps through PCOR, we can work towards a goal to improve maternal care for women with CHD.

Deep caries and pulp exposures management preferences in permanent teeth: A survey amongst Spanish dentists.

To assess Spanish dentists' management preferences for deep caries removal and exposed pulps in permanent teeth. A web-based open and anonymous survey was distributed by social media and a specific website for this project amongst dentists practicing in Spain. The questionnaire comprised 40 questions, divided into five sections: (1) demographic data and professional activity; (2) carious tissue removal; (3) decision-making regarding pulp exposure; (4) direct pulp capping and (5) pulpotomy procedures in permanent teeth. Results were descriptively analysed. Logistic regression (95% CI) analyses and X2 tests were carried out. A total of 538 responses were received. Half the respondents (53.7%) preferred to perform complete caries excavation for shallow and moderate carious dentin lesions, and selective excavation to firm dentin for deep lesions (57.8%). Selective removal to soft dentin and stepwise removal were much less indicated (15.4% and 10.9%, respectively). Exposed pulps in asymptomatic teeth were treated by direct pulp capping (over 80%), decreasing in the presence of reversible pulpitis symptoms (57.1%). If irreversible pulpitis was diagnosed, a pulpectomy would be performed by 53.5% and 89.9% of the respondents in, respectively, immature and mature teeth. Pulpotomy was performed routinely only by 26.4% of the clinicians. Patients' attitudes and priorities were the most relevant criteria when performing direct pulp capping and pulpotomy, together with the history of pain and the presence of bleeding. Regarding the clinical procedure, dry cotton was preferred to obtain haemostasis and Biodentine was the material of election. Caries removal preferences and management of pulp exposure by dentists practicing in Spain deviated from vital pulp treatment guidelines, mainly regarding indications and case selection. Pulp exposure was managed by direct pulp capping in asymptomatic cases, whilst immature permanent molars favoured the indication of pulpotomy when pulpitis was diagnosed. Most clinicians used hydraulic calcium silicate cement, specifically Biodentine, to perform vital pulp treatments. Postgraduate formation and continuing education in caries lesions management and vital pulp treatments were consistently related to more conservative and updated decisions.

Non-Hormonal Therapy for Endometriosis Based on Angiogenesis, Oxidative Stress and Inflammation.

Endometriosis is a common gynecological disease that occurs in between 6 and 10% of women who are at reproductive maturity. The presence of endometrial tissue outside the uterine cavity is the defining characteristic of this disease. Although the etiology of endometriosis remains controversial, there is a general consensus that multiple biological processes such as angiogenesis and vasculogenesis, oxidative stress, and inflammation contribute to its complex pathophysiology. Patients' expectations and priorities influence the treatment plan that is selected. For instance, therapy with hormone medications is inappropriate for endometriosis patients who wish to become pregnant since these medications interfere with ovulation. On the other hand, considering that the current endometriosis treatments are associated with recurrence of pain and disease despite the treatment of the disease and have many side effects, the design and application of non-hormonal drugs in this field is very necessary. Therefore, in this article, we tried to have an overview on non-hormonal treatments by considering angiogenesis, oxidative stress, and inflammation as important biological processes involved in endometriosis.