Patient Experience Research Articles

Shining a Spotlight on Stigma: Exploring Its Impact on Oral Health-Seeking Behaviours Through the Lenses of Patients and Caregivers.

Introduction The unique nature of a lack of good oral health, coupled with the lack of discussion and recognition surrounding the associated stigma, highlights it as a distinct issue. This stigma causes discomfort, devalues individuals, and necessitates urgent care and intervention. In Pakistan, a variety of reasons, including cultural beliefs, socioeconomic gaps, and poor access to dental care services, tend to exacerbate the stigma that is associated with dental care. This study aimed to determine the impact of stigma on oral health-seeking behaviours amongst the population of South Punjab in Pakistan. Methodology The study employed a qualitative design with a phenomenological approach, and the data collection was preceded by the administration of semi-structured interview guides and discussion guides to the patients and the consultant group, respectively. The targeted population was composed of patients who had reported stigmatization and a focus group of 10 dental consultants from various specialisations in dentistry. Data was collected until saturation from 16 patients who were recruited through the purposive convenience sampling technique. Results The study identified three themes, including perceived stigmaimpact on health-seeking behaviours and coping mechanisms; 10 subthemes emerged. Results showed social attitudes and unhealthy perceptions of oral conditions that lead to shame, loss of self-esteem, and lack of confidence among affected individuals. Behavioural reactions like mockery and discrimination further made it difficult for the participants who sought dental care and treatment. The study highlighted that stigma resulted in the avoidance of dental care, deterioration of oral health, and a tendency towards self-medication. People also used coping strategies such as hiding dental issues by avoiding social gatherings and seeking help from close friends to manage oral health stigma. Dental consultants had the strong opinion that care quality could be enhanced by utilising compassionate communication and patient education campaigns. Conclusions The experiences of patients and consultants related to dental stigmahighlighted the complex interplay of sociocultural norms and healthcare practices. The study demonstrated that perceived stigmaimpacted the health-seeking behaviours of patients. Social support and education about oral health helped patients overcome this stigma. The study revealed that patients avoided dental treatments due to stigmatised behaviour from health professionals, a lack of affordability, and a feeling of shame to show and discuss the condition of their teeth, which got even worse due to self-remedy. The experiences of patients and consultants highlighted the need for increased advocacy, educational campaigns, and policies that can reduce inequalities in oral health and improve health equity. The study recommends specific intervention strategies and policy formulation to address oral health inequalities and contribute to advancing oral health equity in Pakistan.

Revolutionizing Reproduction: The Impact of Robotics and Artificial Intelligence (AI) in Assisted Reproductive Technology: A Comprehensive Review.

Assisted reproductive technology (ART) has revolutionized the field of reproductive medicine, offering hope to millions of individuals and couples facing infertility challenges. In recent years, integrating robotics and artificial intelligence (AI) has emerged as a promising avenue for advancing ART. This comprehensive review explores the transformative impact of robotics and AI on ART, examining recent advancements, technological applications, clinical implications, and ethical considerations. Robotics enables precise and minimally invasive procedures, enhancing the efficiency and accuracy of various reproductive techniques such as sperm retrieval, embryo handling, and surgical interventions. Meanwhile, AI offers predictive analytics, personalized treatment protocols, and decision support systems tailored to individual patient needs, optimizing treatment outcomes and expanding access to reproductive care. Key findings highlight the significant advancements made possible by robotics and AI in ART, including improved success rates, reduced risks, and enhanced patient experience. However, challenges such as regulatory considerations, adoption barriers, and ethical dilemmas must be addressed to realize the full potential of these technologies. The transformative impact of robotics and AI on ART is profound, shaping the future of fertility treatment and family-building worldwide. Continued research, interdisciplinary collaboration, and investment are essential to further harness the potential of robotics and AI in advancing reproductive medicine and ensuring accessible, equitable, and effective care for all individuals and couples.

Real-world experiences of migraine patients on Erenumab: a Kuwait single center cohort

ABSTRACT Background Migraine is a prevalent headache disorder with a significant impact on the quality of life. This study aims to investigate the effectiveness and safety of erenumab, mAb targeting the CGRP receptor, in treating chronic (CM) and episodic (EM) migraine in clinical practice Kuwait, providing region-specific insights to treatment options. Method This was a prospective observational cohort study of patients diagnosed with EM or CM treated with erenumab. The primary outcome of the study was to assess the proportion of patients achieving ≥ 50% reduction in monthly mean migraine days, and several changes including the mean number of monthly migraine days, the frequency of analgesic use, attack severity, AEs, and QoL. Results The study included 151 patients with a mean age of 44.0±11.4 years, and 81.9% female. The primary outcome was achieved in 74.2% of patients, with a significant (p < 0.001) reduction in headache frequency, pain severity, analgesic use, and improvement in QoL. Age and duration of migraine were significant predictors of achieving a ≥ 50% reduction in headache frequency after therapy (OR = 0.955; p = 0.009) and (OR = 0.965; p = 0.025), respectively. Treatment compliance was observed in 76.2% of patients, and 24.5% discontinued treatment. Constipation was the most commonly reported AEs (6.0%), and conservative management was the most common approach to managing AEs. Conclusion Erenumab was effective in reducing the frequency and severity of migraine attacks and improving QoL, and safe with manageable AEs in a real-world setting in Kuwait. Further research is needed to better understand erenumab’s effectiveness and safety in different populations and settings, as well as to compare it with other migraine prophylactic treatments.

Recommendations for patient-centered emergency care.

Patient-centred care is more than just an aspiration, it represents a fundamental shift in the way healthcare must be delivered. Patient-centred emergency care is important for improving the patient and clinician experience and is essential for optimizing health outcomes. Creating a patient-centred emergency department emphasizes the importance of the patient's experience, preferences, and values. To formulate recommendations for patient-centred care, we synthesized a literature review, stakeholder interviews, consensus from an expert panel of diverse healthcare professionals and a patient advocate, andreviewed our recommendations for feedback with a presentation at the Canadian Association of Emergency Physicians (CAEP) 2023 Annual Conference Academic Symposium. This paper gives practical recommendations for areas and strategies to improve patient-centredness in Emergency Medicine. It delves into the various dimensions of this approach, including the role of the physical environment, communications and interpersonal interactions, systems of care, and measurement, all of which are essential in providing optimal care to match the patients' needs. We seek to inspire a renewed commitment of placing the patient at the heart of emergency care, recognizing that patient-centredness is not merely an option but a fundamental aspect of delivering highquality, compassionate and effective healthcare in the emergency setting. In an era marked by technological advancements and evolving healthcare paradigms, the essence of medicine as a deeply human endeavour is becoming in some ways more possible, if we seize the opportunities.

Hypoglossal Nerve Stimulation Therapy in a Belgian Cohort of Obstructive Sleep Apnea Patients.

Hypoglossal nerve stimulation (HGNS) has emerged as a widespread and innovative treatment option for selected moderate-to-severe obstructive sleep apnea (OSA) patients who cannot be treated effectively with traditional treatment modalities. In this observational cohort study, the objective and subjective outcomes of Belgian OSA patients treated with HGNS therapy were analyzed at 6 and 12 months post-implantation. Thirty-nine patients implanted with a respiration-synchronized HGNS device at the Antwerp University Hospital w ere included in this study. Patients underwent baseline in-laboratory polysomnography and a follow-up sleep study 6 and 12 months post-implantation. Questionnaires on patient experience and daytime sleepiness were filled out and data on objective therapy usage were collected. All 39 patients completed the 6-month follow-up and 21 patients (54%) completed the 12-month follow-up. Median AHI decreased from 33.8 [26.1;45.0] to 10.2 [4.8;16.4] at the 6-month follow-up, and to 9.6 [4.1;16.4] at the 12-month follow-up (p < 0.001). The surgical success rate, according to the Sher20 criteria, was 80% and 76% at the 6- and 12-month follow-ups, respectively. Median ESS improved from 12.0 [7.0;18.0] at baseline to 6.0 [2.5;11.0] at 6 months (p < 0.001) and to 6.5 [2.8;11.5] at 12 months (p = 0.012). Objective therapy usage was 7.4 [6.6;8.0] and 7.0 [5.9:8.2] h/night at the 6- and 12-month follow-ups, respectively. A high overall clinical effectiveness of HGNS therapy, as shown by a mean disease alleviation of 58%, was demonstrated at 12 months post-implantation. Overall, HGNS therapy using respiration-synchronized neurostimulation of the XII cranial nerve resulted in a significant improvement in both objective and subjective OSA outcomes, with a high level of patient satisfaction and high treatment adherence.

End-of-life care needs in cancer patients: a qualitative study of patient and family experiences

BackgroundCancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death.MethodsSemi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach.ResultsFour major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance.ConclusionsA lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.

Experiences and preliminary effects of the Comprehensive chrOnic caRe outpatiEnt (CORE) clinic for patients with multimorbidity in the hospital setting.

Healthcare systems remain disease oriented despite growing sustainability concerns caused by inadequate management of patients with multimorbidity. Comprehensive care programmes (CCPs) can play an important role in streamlining care delivery, but large differences in setup and results hinder firm conclusions on their effectiveness. Many elements for successful implementation of CCPs are identified, but strategies to overcome barriers and embed programmes within health systems remain unknown. To address this knowledge gap through a detailed study of implementing a CCP in a Dutch hospital setting, including patient experiences, facilitators, barriers and ways to overcome those barriers. Additionally, this study aims to explore effects on patient satisfaction and healthcare use. A qualitative study design with 39 semistructured interviews and focus groups between July 2020 and February 2023 with 16 patients and 17 involved professionals. Additionally, effects on quantitative outcomes for patient satisfaction (PACIC-20) and healthcare use were explored. Professionals expressed a wide range of topics related to implementation and ways to overcome barriers at hospital and system level. Alterations in the design to accommodate varying care demands, focus on inclusions through referrals, and lack of long-term support and appropriate financing were key topics. Patients expressed varying experiences, stated a strong desire for comprehensive information, and emphasised the importance of trust in caregivers. Patient satisfaction showed no effects, while healthcare use showed slight decreases in trends, but patient numbers were limited. The introduction of a CCP is feasible, and exploratory analysis on effectiveness shows lower hospital care use without decreasing patient satisfaction. However, this is accompanied by several challenges that show current fragmented systems still do not support implementation of integrated care initiatives. Overcoming those comes with substantial costs and may require a strong bottom-up implementation within a motivated team and actions on all levels of healthcare systems.

Team climate, job satsfaction and burnout: results from a national survey of staff in general practice in England.

Measures are needed to address recruitment and retention problems in general practice. A good team climate (relational processes of team working) can mitigate the effects of pressured work environments, but little is known about it in British general practice. To assess team climate, explore practice characteristics and workforce combinations associated with favourable team climates, and analyse associations between practice team climate and job satisfaction, intention to remain in post, burnout and measures of practice performance. An online questionnaire distributed to practices (for all their staff) via Clinical Research Networks, mid 2022, comprising validated measures: 14 item Team Climate Inventory (TCI) and single items on job satisfaction and emotional exhaustion/burnout; a question on intention to remain in post; participant role, age group, gender. Anonymous completion; submission through the Oxford RCGP RSC. Responses received from 4.8% of national staff headcount, n = 9835, (21.6% GP, 22.9% nurse/direct patient care, 55.5% non-clinical). Mean TCI score, 3.73 (scale 1-5 best); 78.3% were satisfied in their jobs; 26.1% reported high burnout. GPs perceived significantly better team climate, and reported lower job satisfaction, higher burnout (especially male GPs) and lower intention to quit than other groups. After adjusting for practice and workforce characteristics, team climate was better in smaller practices and associated with more job satisfaction, less burnout, increased intention to remain and improved patient-reported experiences; climate was unrelated to QOF performance. Team climate could be used to improve morale and patient experience. Micro teams might be beneficial in larger practices.

Attitudes and experiences of cancer patients toward the provision of audio recordings of their own medical encounter: a cross-sectional online survey.

The provision of audio recordings of their own medical encounters to patients, termed consultation recordings, has demonstrated promising benefits, particularly in addressing information needs of cancer patients. While this intervention has been explored globally, there is limited research specific to Germany. This study investigates the attitudes and experiences of cancer patients in Germany toward consultation recordings. We conducted a nationwide cross-sectional quantitative online survey, informed by semi-structured interviews with cancer patients. The survey assessed participants' attitudes, experiences and desire for consultation recordings in the future. The data was analyzed using descriptive statistics and subgroup analyses. A total of 287 adult cancer patients participated. An overwhelming majority (92%) expressed a (very) positive attitude. Overall, participants strongly endorsed the anticipated benefits of the intervention, such as improved recall and enhanced understanding. Some participants expressed concerns that physicians might feel pressured and could become more reserved in their interactions with the use of such recordings. While a small proportion (5%) had prior experience with audio recording medical encounters, the majority (92%) expressed interest in having consultation recordings in the future. We observed positive attitudes of cancer patients in Germany toward consultation recordings, paralleling international research findings. Despite limited experiences, participants acknowledged the potential benefits of the intervention, particularly related to recalling and comprehending information from medical encounters. Our findings suggest that the potential of the intervention is currently underutilized in German cancer care. While acknowledging the possibility of a positive bias in our results, we conclude that this study represents an initial exploration of the intervention's potential within the German cancer care context, laying the groundwork for its further evaluation.

Green synthesis and characterization of AgNPs, liposomal loaded AgNPs and ZnPcS4 photosensitizer for enhanced photodynamic therapy effects in MCF-7 breast cancer cells

Breast cancer remains a formidable challenge in oncology despite significant advancements in treatment modalities. Conventional therapies such as surgery, chemotherapy, radiation therapy, and hormonal therapy have been the mainstay in managing breast cancer for decades. However, a subset of patient's experiences treatment failure, leading to disease recurrence and progression. Therefore, this study investigates the therapeutic potential of green-synthesized silver nanoparticles (AgNPs) using an African medicinal plant (Dicoma anomala methanol root extract) as a reducing agent for combating breast cancer. AgNPs were synthesized using the bottom-up approach and later modified with liposomes (Lip) loaded with photosensitizer (PS) zinc phthalocyanine tetrasulfonate (Lip@ZnPcS4) using thin film hydration method. The successful formation and Lip modification of AgNPs, alongside ZnPcS4, were confirmed through various analytical techniques including UV–Vis spectroscopy, Fourier-transform infrared spectroscopy (FT-IR), high-resolution transmission electron microscopy (HR-TEM), scanning electron microscopy (SEM) and energy dispersive X-ray spectroscopy (EDS). Following a 24 h treatment period, MCF-7 cells were assessed for viability using 3-[4,5-dimethylthiazol-2-yl]-2,5 diphenyl tetrazolium bromide (MTT viability assay), cell death analysis using mitochondrial membrane potential (MMP) (ΔΨm), Annexin V-fluorescein isothiocyanate (FITC)-propidium iodide (PI) kit, and caspase- 3, 8 and 9 activities. The experiments were repeated four times (n = 4), and the results were analyzed using SPSS statistical software version 27, with a confidence interval set at 0.95. The synthesized nanoparticles and nanocomplex, including AgNPs, AgNPs-Lip, Lip@ZnPcS4, and AgNPs-Lip@ZnPcS4, exhibited notable cytotoxicity and therapeutic efficacy against MCF-7 breast cancer cells. Notably, the induction of apoptosis, governed by the upregulation of apoptotic proteins i.e., caspase 8 and 9 activities. In addition, caspase 3 was not expressed by MCF-7 cells in both control and experimental groups. Given the challenging prognosis associated with breast cancer, the findings underscore the promise of liposomal nanoformulations in cancer photodynamic therapy (PDT), thus warranting further exploration in clinical settings.

Factors Influencing Patient Decision-Making in the Treatment of Muscle-Invasive Bladder Cancer

BACKGROUND: In 2023, an estimated 82,290 individuals were diagnosed with bladder cancer in the United States. For muscle-invasive bladder cancer (MIBC), the American Urological Association recommends offering radical cystectomy with cisplatin-based neoadjuvant chemotherapy. However, patients are increasingly requesting alternative treatments. OBJECTIVE: To describe factors influencing selection of radical cystectomy with cisplatin-based neoadjuvant chemotherapy (NAC + RC), radical cystectomy monotherapy (RC), or tri-modality therapy (TMT) among patients with MIBC. METHODS: Individual, semi-structured phone interviews were conducted with 18 adults who underwent MIBC treatment at the University of North Carolina, recruiting six patients each from three treatment groups: 1) NAC + RC, 2) RC, and 3) TMT. Interview transcriptions were qualitatively analyzed using QSR NVivo, with major themes and sub-themes extracted. Patients also completed the Shared Decision-Making Questionnaire (SDM-Q-9; range 0–100). RESULTS: Concern for survival and risks, quality of life, and varied patient preferences for involvement influenced the decision-making process. Concern surrounding sexual function, bladder preservation, and urostomy bags drove patients towards TMT. High levels of shared decision-making were observed overall, with a median SDM-Q-9 score of 95 (IQR 89–100). Patients undergoing TMT reported the highest median SDM-Q-9 score (97, IQR 94–100), while those receiving radical cystectomy alone had the lowest (66, IQR 37–96). CONCLUSIONS: Patients with MIBC described a multifaceted treatment decision-making process, highlighting key influences, concerns, and unmet needs. Understanding this process can help address misconceptions and align treatment choices with patient goals. Physicians can use these insights to engage in shared decision-making, ultimately improving patient experiences and outcomes.

A Systemic Review of the “Informed Consent” Process for Aesthetic Cosmetic Surgery Procedures

Informed consent is a foundational component of ethical patient care and may be effectively provided when a competent patient is given pertinent information to make well-informed decisions on their health care. Various studies have considered patients’ experiences with surgery for aesthetic reasons, rather than plastic surgery procedures which are medically warranted for reasons such as restoring form and function. Current empirical discourse on the consenting process, and ultimately how informed patients undergoing cosmetic surgical procedures are, is scant, particularly in Australia. The key aim of this review was to synthesize qualitative and quantitative research which considers the consenting process and the factors which impact on the patient’s decision-making process to undergo invasive cosmetic procedures. Eligible studies were identified via systematic searching across the PubMed and Medline databases; and hand searches were conducted of gray literature databases including university databases and Google Scholar. Reference lists of included studies were also examined for relevant studies. Eligible studies had to meet specific participant criteria including an age requirement of 19 to 64 years and discuss factors or present discussion surrounding the “informed consent” process for invasive cosmetic procedures. The characteristics and findings of each study were extracted. The studies were analyzed and presented under question categories. The Mixed Methods Appraisal Tool was used to assess the quality of evidence. Thirty-one studies were eligible for inclusion. Most studies were quantitative (90.3%). The highest proportion of these studies were focused on the United States (51.6%), followed by the United Kingdom (12.9%). The dominant methodology utilized by these studies was questionnaires/surveys (37.5%). The literature identified was classed into one of the 5 groups based on their overall concepts and objective. These 5 categories included (1) articles focusing on the types of information which should be communicated to a patient before they undergo their procedure or provide consent; (2) legal claims and cases based on a lacking informed consent; (3) sources of information patients access to become “informed” on their procedure; (4) studies exploring the readability of online information on certain invasive cosmetic procedures; and (5) studies focusing on the most effective methods of obtaining patient consent for cosmetic surgery procedures. These categories were reformulated into research questions and addressed in the section “Results of the Findings.” Most of the studies included in this review were quantitative (90.3%). Most studies (where gender was mentioned) had a higher population of female participants or respondents. Women have a greater tendency to have cosmetic surgery opposed to men. There are few studies (particularly qualitative studies) exploring the pre-operative patient experience in Australia for those having or seeking cosmetic surgery. A key stage in this process is obtaining and providing informed consent. A “lack of informed consent” is one of the more dominant factors identified consistently throughout these studies which focus on legal case reviews and claims. A significant source of information patients use to become informed of their procedure is through the Internet. This may be problematic as the readability of online materials is most commonly above the recommended reading level in multiple jurisdictions; and some online materials may have questionable accuracy or validity. Whether or not patients verify the information they access through external sources such as this, is of concern. There have been minimal studies identified exploring the patient experience pre-operatively including during their consultations and decision to provide consent.

(086) MEDICAL GASLIGHTING AND VULVOVAGINAL PAIN DISORDERS

Abstract Introduction Gaslighting is a form of epistemic injustice that involves testimonial injustice, in which patient’s experiences are discounted by others. The incidence of epistemic injustice has been described in a number of pain conditions including chronic fatigue syndrome and fibromyalgia, as well as in marginalized obstetric populations. Little research has been directed towards epistemic injustice in populations seeking treatment for benign gynecologic conditions or the unique context of vulvovaginal pain conditions. Additionally, little is known about the consequence of this type of injustice on patient’s perception of their care or willingness to seek care. Objective The purpose of this study was to develop a patient-validated instrument to measure patient experience of epistemic injustice in their past gynecologic care and to use the instrument to explore patient experiences in a vulvovaginal pain referral center. Methods An instrument was designed by the study team to quantify the incidence and distressed caused by gaslighting in patients seek care for vulvovaginal pain conditions. This was created based on common themes from written testimonials of patients available from National Vulvodynia Association. After construction, the instrument was submitted for feedback to officers from two vulvovaginal pain disorder patient societies. The survey was modified to include the feedback from these sources. The survey was then completed by patients establishing care with the clinic prior to their first appointment. Results 187 patients completed the survey in part or in full. Patients reported having seen an average of 5.7 providers prior to presentation. Patients felt supported by only 42% of past providers. Patients felt belittled by 27% of past providers. Patients felt 21% of past providers did not believe their symptoms. 45% of patients were told they “just needed to relax more”; 18% percent were recommended to drink alcohol to improve their condition; 55% considered giving up seeking care because they felt their concerns were not being addressed; 31% were told their symptoms were caused by high levels of anxiety; 22% were referred to psychiatry without other medical treatment for their symptoms; 19% felt unsafe during a medical encounter. 39% percent of patients were made to feel they were “crazy” and this was the most distressing of the questions asked (average 7.3/10 on a likert scale for distress for patients who had experienced this). Conclusions A survey based on patient concerns and validated by patients affected by vulvovaginal pain conditions has not been previously reported. This instrument was applied to a patient population at a large referral center for vulvovaginal pain conditions and the results showed that patients commonly experienced many forms of epistemic injustice, and greater than half of patients consider cessation of care for their condition because of these experiences. Disclosure Any of the authors act as a consultant, employee or shareholder of an industry for: Dr. Jill Krapf is a medical advisor for Evvy. Dr. Andrew Goldstein is a part time Employee of Daré Bioscience. He is a member of the board of directors of The Gynecologic Cancers Research Foundation. He is an advisor for: AbbVie, Incyte, and the National Vulvodynia Association. He has received research funding from Incyte.

Psychometric evaluation of the patient-reported experience of cognitive impairment in schizophrenia (PRECIS) scale

BackgroundCognitive impairment associated with schizophrenia (CIAS) represents a distinct, persistent, and core group of schizophrenia symptoms. Cognitive symptoms have been shown to have an impact on quality of life. There are several published CIAS measures, but none based on direct patient self-report. It is important to capture the patient’s perspective to supplement performancebased outcome measures of cognition to provide a complete picture of the patient’s experience. This paper describes additional validation work on the Patient-Reported Experience of Cognitive Impairment in Schizophrenia (PRECIS) instrument.MethodsData from two large, international, pharmaceutical clinical trials in medically and psychiatrically stable English-speaking patients with schizophrenia and 88 healthy controls were analyzed. An exploratory factor analysis (EFA) was conducted in one trial (n = 215), using the original 35-item PRECIS. The factor structure suggested by EFA was further evaluated using item response theory (IRT; Samejima’s graded response model), and tested using confirmatory factor analysis (CFA). Both EFA and CFA results were tested in a second trial with similar inclusion/exclusion characteristics (n = 410). Additional statistical properties were evaluated in healthy controls.ResultsEFA suggested that the best solution after item reduction suggested a factor structure of 6 factors based on 26 items (memory, communication, self-control, executive function, attention, sharpness of thought), supporting a total score, with an additional 2-item bother score (28 items in all). IRT analysis indicated the items were well-ordered within each domain. The CFA demonstrated excellent model fit, accounting for 69% of the variance. The statistical properties of the 28-item version of the PRECIS were confirmed in the second trial. Evidence for internal consistency and test-retest reliability was robust. Known-groups validity was supported by comparison of healthy controls with patients with schizophrenia. Correlations indicated moderate associations between PRECIS and functioning instruments like the Schizophrenia Cognition Rating Scale (SCoRS), but weak correlations with performance-based outcomes like MATRICS Consensus Cognitive Battery (MCCB).DiscussionUsing two clinical trial samples, we identified a robust factor structure for the PRECIS and were able to replicate it in the second sample. Evaluation of the meaningful score difference (MSD) should be repeated in future studies, as these samples did not show enough change for it to be evaluated.ConclusionsThis analysis provides strong evidence for the reliability and validity of the PRECIS, a 28-item, patient-reported instrument to assess cognitive impairment associated with schizophrenia. The correlation with functioning and the weak correlation with performance on cognitive tasks suggests that patient reports of cognitive impairment measure a unique aspect of patient experience.

RWD170 Real-World Experience of Patients Newly Initiated on Pexidartinib for Tenosynovial Giant Cell Tumor

RWD170 Real-World Experience of Patients Newly Initiated on Pexidartinib for Tenosynovial Giant Cell Tumor

PCR47 Characterization of Variability in Response Set Composition Across Pros: Insights for Reducing Complexity and Improving the Patient Experience of Clinical Research

PCR47 Characterization of Variability in Response Set Composition Across Pros: Insights for Reducing Complexity and Improving the Patient Experience of Clinical Research

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

BackgroundPatients 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.ObjectiveTo examine whether patients’ experiences with cancer care differ according to their economic status and health literacy.MethodsSecondary 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.ResultsAdjusted 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.DiscussionThis 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.

Factors Influencing Perception of Social Support among Patients with Advanced Cancer Receiving Palliative Care in Bangladesh

The perception of social support among patients with advanced diseases is influenced by various factors. The socio-cultural context of Bangladesh significantly shapes the experience of patients with advanced cancer and their perception of social support. This study’s aim was to assess the perceived social support by these patients and investigate the factors that shape their perception. This cross-sectional study was conducted among 115 advanced cancer patients admitted to the palliative medicine department of a tertiary care hospital in Bangladesh. Perceived social support was measured by the Multidimensional Scale of Perceived Social Support (MSPSS). Perceived social support was moderate to high for most (74.7%) of the participants. The majority (97.4%) perceived moderate to high level of support from their families. The lowest level of support was perceived from friends (53%). Factors such as economic status, family size, companionship of children, and emotional support from spouses influenced the level of perceived social support. Social support is one of the important aspects of palliative care. Identifying the factors influencing the perception of social support among cancer patients is essential for palliative care professionals to effectively address their care needs.

Promoting equity, diversity, and inclusion in surveys: insights from a patient-engaged study to assess long COVID health-care needs in Brazil

Background and ObjectiveLong COVID (LC) refers to persistent symptoms after acute COVID-19 infection, which may persist for months or years. LC affects millions of people globally, with substantial impacts on quality of life, employment, and social participation. Ensuring access to effective, patient-centered care for LC demands evidence, grounded in inclusive representation of those affected by the condition. Yet survey studies frequently under-represent people with the most disabling disease presentations and racially and socioeconomically marginalized groups. We aimed to describe a patient-engaged approach to developing a survey to inform public LC health care and to assess its implementation in terms of enabling participation by diverse LC patients in Brazil. MethodsSurvey development was iterative, achieved through an interdisciplinary collaboration among researchers including people living with LC, and grounded in 3 guiding principles: (1) evidence-based; (2) inclusive, intersectional, and patient-centered understanding of chronic illness and research participation; and (3) sensitivity to the context of health-care access. ResultsThe product of our collaboration was a longitudinal survey using a questionnaire assessing: LC symptoms; their clinical and functional evolution; and impacts on quality of life, household income, health service access, utilization, and out-of-pocket expenses. We illustrate how we operationalized our 3 principles through survey content, instrument design, and administration. Six hundred fifty-one participants with diverse LC symptoms, demography, and socioeconomic status completed the survey. We successfully included participants experiencing disabling symptoms, Black and mixed race participants, and those with lower education and income. ConclusionBy centering patient experience, our novel, principles-based approach succeeded in promoting equity, diversity, and inclusion in LC survey research. These principles guiding patient-engaged collaboration have broad transferability. We encourage survey researchers working on chronic illness and in other contexts of marginalization and inequality to adopt them.

Clinical Evaluation of Vital Inflamed Pulp Therapy as Treatment Options for Deciduous Molars with Periapical Periodontitis

Deciduous teeth, owing to their special anatomical structure, are highly vulnerable to apical periodontitis, particularly when afflicted with deep caries or other endodontic diseases. Traditionally, root canal therapy (RCT) has been the gold standard among pediatric dentists all along. Nevertheless, due to its inherent limitations, researchers are actively exploring alternative therapeutic approaches these years. This study introduces a new treatment modality known as vital inflamed pulp therapy (VIPT). The primary aim of this investigation was to assess the practical feasibility and therapeutic efficacy of VIPT in managing apical periodontitis in deciduous teeth comparing to RCT. After rigorous patients evaluation and examination, VIPT was chosen as the preferred treatment plan, followed by one year long-term follow-up observations. The outcomes revealed that most positive seamless healing of the periapical lesion without any complications in VIPT as the ones in RCT. Notably, the development of the permanent tooth embryo remained unaffected and progressed as anticipated. In conclusion, this study validates the therapeutic potential of VIPT in treating apical periodontitis in deciduous teeth, offering a novel approach for managing deciduous tooth diseases. The clinical application of this method is expected to enhance patient experiences and prognostic outcomes in the treatment of deciduous tooth pathologies.