Understanding Of Patient Experience Research Articles

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.

Characterization of Telecare Conversations on Lifestyle Management and Their Relation to Health Care Utilization for Patients with Heart Failure: Mixed Methods Study.

Telehealth interventions where providers offer support and coaching to patients with chronic conditions such as heart failure (HF) and type 2 diabetes mellitus (T2DM) are effective in improving health outcomes. However, the understanding of the content and structure of these interactions and how they relate to health care utilization remains incomplete. This study aimed to characterize the content and structure of telecare conversations on lifestyle management for patients with HF and investigate how these conversations relate to health care utilization. We leveraged real-world data from 50 patients with HF enrolled in a postdischarge telehealth program, with the primary intervention comprising a series of telephone calls from nurse telecarers over a 12-month period. For the full cohort, we transcribed 729 English-language calls and annotated conversation topics. For a subcohort (25 patients with both HF and T2DM), we annotated lifestyle management content with fine-grained dialogue acts describing typical conversational structures. For each patient, we identified calls with unusually high ratios of utterances on lifestyle management as lifestyle-focused calls. We further extracted structured data for inpatient admissions from 6 months before to 6 months after the intervention period. First, to understand conversational structures and content of lifestyle-focused calls, we compared the number of utterances, dialogue acts, and symptom attributes in lifestyle-focused calls to those in calls containing but not focused on lifestyle management. Second, to understand the perspectives of nurse telecarers on these calls, we conducted an expert evaluation where 2 nurse telecarers judged levels of concern and follow-up actions for lifestyle-focused and other calls (not focused on lifestyle management content). Finally, we assessed how the number of lifestyle-focused calls relates to the number of admissions, and to the average length of stay per admission. In comparative analyses, lifestyle-focused calls had significantly fewer utterances (P=.01) and more dialogue acts (Padj=.005) than calls containing but not focused on lifestyle management. Lifestyle-focused calls did not contain deeper discussions on clinical symptoms. These findings indicate that lifestyle-focused calls entail short, intense discussions with greater emphasis on understanding patient experience and coaching than on clinical content. In the expert evaluation, nurse telecarers identified 24.2% (29/120) of calls assessed as concerning enough for follow-up. For these 29 calls, nurse telecarers were more attuned to concerns about symptoms and vitals (19/29, 65.5%) than lifestyle management concerns (4/29, 13.8%). The number of lifestyle-focused calls a patient had was modestly (but not significantly) associated with a lower average length of stay for inpatient admissions (Spearman ρ=-0.30; Padj=.06), but not with the number of admissions (Spearman ρ=-0.03; Padj=.84). Our approach and findings offer novel perspectives on the content, structure, and clinical associations of telehealth conversations on lifestyle management for patients with HF. Hence, our study could inform ways to enhance telehealth programs for self-care management in chronic conditions.

Discovering a “sense of community”: patient experiences of connection in intentionally remote eating disorder care

BackgroundWhile some findings indicate high levels of patient satisfaction with remote eating disorder treatment, others reflect feelings of disconnection due to unique telehealth treatment challenges. The COVID-19 pandemic presented circumstances that likely impacted the findings established thus far. As such, the present study sought to understand patient experiences of connection in an intentionally remote eating disorder treatment program, specifically in a context outside of pandemic transition.MethodsA secondary analysis of de-identified qualitative data previously obtained for quality improvement purposes via a client satisfaction survey was conducted. Adult patient responses (N = 38) were analyzed via reflexive thematic analysis within a critical realist framework.ResultsFour themes were generated from the data: (1) Embracing one’s humanity paves the way for connection, (2) Discovering a “sense of community” in remote care, (3) “They made me feel I was worth recovering”: connection as a vehicle for healing, and (4) Aligning expectations and reality: reconceptualizing the journey to connection in remote eating disorder care.ConclusionsOverall, findings suggest that it is possible for patients to form strong, impactful connections in remote treatment. Importantly, patient perspectives indicated that there were shifts in how these connections were experienced as a result of the remote care environment (e.g., how support could be provided and by whom). Considerations unique to remote care (e.g., offering training to improve clients’ comfort with technology) may be important to fostering connection, thereby contributing to improved patient experiences and treatment outcomes.

Patient Experiences With Group Teletherapy for the Treatment of Mental Illness: A Qualitative Study.

The authors sought to understand patient experiences with group teletherapy to inform improvements in service delivery. From December 2022 to October 2023, semistructured interviews were conducted with 20 adults with depression or bipolar disorder who had received outpatient group teletherapy in the past 2 years. A rapid thematic analysis was conducted by using a matrix to identify patterns and synthesize data. A logic model from the patients' perspective was developed by extracting common themes related to elements of effective group teletherapy. Telehealth allowed for more empowered engagement in group teletherapy and enabled better access and longitudinal attendance for many patients, compared with in-person group therapy. However, many patients reported a reduced sense of emotional intimacy and connectedness with telehealth, and some reported that technology challenges and distractions contributed to feelings of disconnection. Patients were divided in their modality preferences, but many expressed an interest in receiving at least some of their group therapy sessions by telehealth. Although group teletherapy has the potential to meet patients' needs and preferences, more work is needed to improve the quality of the experience for patients.

Understanding patient experiences to improve care for females groin hernia.

Thousands of females undergo inguinal hernia repair annually, yet females have been excluded from prior clinical trials evaluating inguinal hernia repairs. Research shows females face worse outcomes after hernia repair compared to males, including higher recurrence rates, increased chronic pain, and limited data to guide treatment. Prospective studies focused on optimizing outcomes for females are critically needed. Prior to conducting such trials, it is essential to obtain preliminary data from female participants to ensure that the studies are designed appropriately to address their priorities and improve sex disparities in outcomes. Semi-structured qualitative interviews were conducted between July 7 and December 31, 2023, with 34 females evaluated for groin hernia. Interviews were conducted via Zoom at an academic medical center. The discussions aimed to explore the challenges in diagnosing hernias, the considerations for selecting treatment options, and the priorities for future research. The transcripts were analyzed using descriptive content analysis, facilitated by MAXQDA software. Diagnostic challenges included delayed recognition due to underappreciation of female hernias. Participants desired greater familiarity with hernias and treatment options from providers. For surgical decisions, fear of complications drove some towards surgery, while others prioritized avoiding recovery time for asymptomatic hernias. Participants called for research on female-specific risk factors, pain experiences, recovery impacts, and non-operative approaches. The majority of participants agreed or considered participating and serving as an advisor in a future study. Females with hernia face sex-based disparities in diagnosis and treatment. Improving provider awareness and developing guidelines are needed. This qualitative study identifies key areas for future research to optimize person-centered hernia care for females based directly on personal perspectives and priorities, laying the groundwork for prospective trials aimed at improving outcomes.

In Their Own Words: Patient Narratives of Breast Cancer Surgery and Reconstruction.

Breast cancer's global burden prompts a comprehensive understanding of patient experiences surrounding surgical interventions. Social media platforms serve as a new potential avenue for analysis, reflecting patients' coping mechanisms and support-seeking behaviors. This study's objective is to further understand patient experiences regarding breast cancer interventions via social media to improve physician-patient dialogue. A cross-sectional study was conducted of Instagram and TikTok posts surrounding breast cancer surgeries using procedure-related hashtags. Content was categorized to prevalent themes related to Breast-Q foci and was subsequently analyzed. Data from 1,028 individuals were analyzed. Posts encompassed double mastectomy (39%), single mastectomy (22%), and combineddeep inferior epigastric perforator flap, latissimus dorsi flap, and transverse rectus abdominis muscle flapreconstruction (39%). Frequently identified themes included 'Raising Awareness' (86.87%), 'Spreading Positivity' (53.11%), 'Resiliency' (31.03%), 'Online Support' (24.61%), 'Update of Appearance' (20.82%), 'Recovery/Rehab' (19.94%), and 'Scientific Explanation' (19.75%). Instagram posts more likely encompassed positivity (p < 0.001), resiliency (p = 0.001), and mental health (p = 0.011). TikTok posts more likely (p = 0.001) discussed scientific explanations, decision-making, and symptoms (p < 0.001). Preoperative posts more likely (p < 0.001) surrounded scientific explanations, decision-making, and fear. Postoperative posts more likely (p < 0.001) highlighted appearance updates, recovery/rehab, and positivity (p = 0.012). Experiences with mastectomy and reconstruction differed: recovery/rehab (p < 0.001), scientific explanations (p = 0.015), treatment process (p = 0.003), range of motion (p < 0.001), self-esteem (p = 0.017), and wound management (p = 0.008). Concerns of patients online reflect Breast-Q measures. Understanding these nuanced patient discussions can provide novel insights for providers. Tailoring interactions through these insights may facilitate enhanced support, discussions, and experiences throughout the treatment journey. Main Points Social media offers a unique insight into personal patient experiences Online breast surgery patient perspectives reflect Breast-Q measures Outlooks from shared online posts may facilitate physician-patient dialogue LEVEL OF EVIDENCE V: This journal requires that authors assign a level of evidence to each article. For a full description of these Evidence-Based Medicine ratings, please refer to the Table of Contents or the online Instructions to Authors www.springer.com/00266 .

The impact of COVID-19 on time toxicity in patients with advanced cancer.

267 Background: The COVID-19 pandemic necessitated the rapid adoption of telemedicine but little is known about whether the changes in care delivery has led to differences in time toxicity for patients with advanced cancer. This study examines the impact of the pandemic on time toxicity, defined as the time burden of interacting with the healthcare system, by comparing healthcare contact days between pre-COVID and post-COVID periods. Methods: A retrospective cohort study was performed on patients with advanced (stage 4) cancer who died within one year of diagnosis at Kaiser Permanente Northern California between January 1, 2015 and June 30, 2023. Time toxicity was defined as the percentage of healthcare contact days over the course of survival period between cancer diagnosis and death (contact days/survival days). We included outpatient days (imaging, labs, treatment, provider visits), inpatient stays (emergency department, acute inpatient, non-acute institutional stays), and in-home days (in-home care, virtual care, home hospice). Differences between pre-COVID (diagnosed and died before March 1, 2020) and post-COVID (diagnosed after March 1, 2020) periods were analyzed using Wilcoxon tests. Results: The cohort included 9643 patients, with 6558 pre-COVID and 3085 post-COVID. Median age at diagnosis was 74 years, and the cohort was 46.9% female, largely white (64.5%), with a high comorbidity score (median Elixhauser score: 4). Post-COVID, there was an increase in institutional stay (8.7% vs. 9.3%) and outpatient service (imaging and labs) (4.4% vs. 3.1%), while in-person outpatient visits decreased (5.9% vs. 8.7%, p&lt;0.0001). Additionally, in-home days increased (25.0% vs. 20.8%), with a significant rise in in-home virtual care (3.9% vs. 1.8%, all p&lt;0.01). Conclusions: The COVID-19 pandemic led to notable shifts in healthcare utilization for patients with advanced cancer in the last year of life. The increase in telehealth and in-home services in the post-COVID era was accompanied by a slight increase in emergency and ancillary services. Further understanding patient experiences around these shifts is crucial for optimizing care and managing time toxicity in the evolving healthcare landscape. Description of outcomes pre and post-COVID-19 pandemic. Total Pre-COVID Post-COVID P-value Survival Days, median 86.0 84.0 89.0 0.02 Percentage of Contact, median (interquartile range) Comprehensive Contact 63.3 (41.0-92.0) 62.5 (40.7-91.0) 65.2 (41.7-94.1) 0.01 Institutional stay 9.0 (2.7-26.2) 8.7 (2.7-25.9) 9.3 (2.9-26.8) 0.11 Outpatient 12.4 (5.3-19.8) 12.9 (5.6-20.6) 11.2 (4.8-18.1) &lt;.001 Outpatient visit 7.7 (2.8-13.4) 8.7 (3.5-14.6) 5.9 (1.6-10.7) &lt;.0001 Outpatient service 3.5 (0.8-6.3) 3.1 (0.4-5.8) 4.4 (1.5-7.1) &lt;.0001 In-home 22.2 (7.4-50.0) 20.8 (6.0-48.4) 25.0 (10.4-51.7) &lt;.001 In-home care 18.1 (1.7-46.6) 17.4 (1.2-46.2) 19.2 (2.4-47.2) 0.03 In-home virtual care 2.2 (0.0-4.8) 1.8 (0.0-3.8) 3.9 (0.7-7.0) &lt;.0001

An Evaluation of the Maternal Patient Experience through Natural Language Processing Techniques: The Case of Twitter Data in the United States during COVID-19

The healthcare sector constantly investigates ways to improve patient outcomes and provide more patient-centered care. Delivering quality medical care involves ensuring that patients have a positive experience. Most healthcare organizations use patient survey feedback to measure patients’ experiences. However, the power of social media can be harnessed using artificial intelligence and machine learning techniques to provide researchers with valuable insights into understanding patient experience and care. Our primary research objective is to develop a social media analytics model to evaluate the maternal patient experience during the COVID-19 pandemic. We used the “COVID-19 Tweets” Dataset, which has over 28 million tweets, and extracted tweets from the US with words relevant to maternal patients. The maternal patient cohort was selected because the United States has the highest percentage of maternal mortality and morbidity rate among the developed countries in the world. We evaluated patient experience using natural language processing (NLP) techniques such as word clouds, word clustering, frequency analysis, and network analysis of words that relate to “pains” and “gains” regarding the maternal patient experience, which are expressed through social media. The pandemic showcased the worries of mothers and providers on the risks of COVID-19. However, many people also shared how they survived the pandemic. Both providers and maternal patients had concerns regarding the pregnancy risks due to COVID-19. This model will help process improvement experts without domain expertise to understand the various domain challenges efficiently. Such insights can help decision-makers improve the patient care system.

Understanding the Perspectives and Experiences of Patients with Acute Severe Ulcerative Colitis in the Hospital: A Qualitative Analysis.

Acute severe ulcerative colitis (ASUC) is a life-treating presentation of ulcerative colitis (UC) that requires prompt initiation of treatment to avoid complication. Unfortunately, outcomes for ASUC are suboptimal, with as many as 20-30% of patients requiring colectomy. This can be challenging for patients and highlights the need to understand patient experiences and perspectives navigating ASUC. A qualitative descriptive study utilizing semi-structured interviews was conducted to understand perspectives and experiences of patients navigating ASUC. Adult patients hospitalized for ASUC between January 2017 and March 2024 were eligible. Interviews were conducted both retrospectively among patients with a recent hospitalization and prospectively among patients within 24h of hospitalization for ASUC. Interviews were analyzed using a well-established hybrid inductive-deductive approach. Thirty-four patients (44.2% response rate) hospitalized for ASUC were interviewed. Hybrid thematic analysis uncovered five major themes: (1) the pervasive impact of UC on QoL and mental health, (2) challenges associated with navigating uncertainty, (3) prioritizing colon preservation, (4) bridging the divide between outpatient expectations and inpatient realities, and (5) balancing rapid symptom improvement with steroid safety. Our findings advocate for transparent approach to care, emphasizing the need for effective communication, education, and better alignment with patient values and expectations. Five key themes were identified, each with significant implications for developing a more patient-centered approach to ASUC care. These themes captured meaningful insight into patient perceptions and experiences, identifying multiple areas for actionable interventions to improve care.

Similar accuracy and patient experience with different one-step ovulation predictor kits

To examine the accuracy of five different at home ovulation predictor kits (OPKs), and to understand patient experience with the use of those kits. Prospective cohort study. Single academic fertility practice. Patients with regular menses undergoing monitored natural cycle frozen embryo transfer, timed intercourse, and intrauterine insemination cycles involving daily blood luteinizing hormone (LH) level monitoring between 2022 and 2024. Use of five commercially available OPKs for the first five days of blood LH monitoring with a daily experience survey. The primary outcome was accuracy of the ovulation predictor kits defined as concordance between test result (positive or negative) and blood LH level (above or below 25mIU/ml). Secondary outcomes included positive predictive value, negative predictive value, sensitivity, and specificity of OPK surge detection. We also examined patient report regarding clarity of kit instructions, confidence in kit results, and likelihood of future purchase and use. 23 patients completed 97 total days of ovulation predictor kit testing and 13 patients had a documented blood LH surge during their testing. OPK surge detection accuracy when compared to blood LH surge was similar across the five kits (Easy@Home 95.88%, Wondfo 94.85%, Pregmate 96.90%, Clearblue 91.75%, Clinical Guard 91.75%, p-value 0.06). Sensitivity was slightly better for Easy@ Home (75.00%), Wondfo (69.23%) and Pregmate (76.92%) than for Clearblue (61.54%) and Clinical Guard (38.46%). There were no clinically significant differences between the five OPKs regarding positive predictive value, negative predictive value, or specificity of surge detection. Participant experience was qualitatively similar across all five OPKs with exception of slightly fewer patients reporting that they were likely to purchase and use Clinical Guard again in the future. All five tested at home one step OPKs were highly accurate and performed similarly regarding patient experience despite variation in price.

Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study.

Remote and digital consulting in primary care has rapidly expanded since March 2020. It is important to understand patient experiences, particularly for those living with complex long-term conditions, to identify how care can best be delivered, including within the remote space. To explore the experiences of people living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis [CFS/ME] and Fibromyalgia when consulting remotely in primary care. Semi-structured interviews with patients living with CFS/ME and fibromyalgia in general practice in England METHOD: Semi-structured interviews were carried out with 13 participants. The interviews were transcribed and analysed thematically according to a Foucauldian theoretical framework. All participants highlighted needing to feel believed by clinicians. Many reported difficulties with telephone and online consulting due to the lack of physical communication. Positive outcomes were reported when there was a good relationship with a clinician. Continuity in care and recognising the complexity of these conditions were also considered important. This study allowed people living with CFS/ME and Fibromyalgia to describe their experiences when consulting remotely. Participants highlighted needing to feel listened to and felt they benefited from an ongoing relationship with a clinician although this was difficult to achieve when consulting remotely. Some advantages of remoted consulting were reported, particularly when symptoms were troublesome. Flexible access systems with a range of consultation modalities or preferred clinician(s) availability could improve healthcare encounters, particularly given the increased use of remote consulting, in primary care.

Living with faecal incontinence: a qualitative investigation of patient experiences and preferred outcomes through semi-structured interviews.

Faecal incontinence (FI) is a prevalent and debilitating anorectal problem causing embarrassment, anxiety, and social isolation, diminishing quality of life. At present there is no optimal treatment option for FI. Consequently, treatments primarily focus on symptom reduction and improving quality of life. Understanding patient experiences and outcomes they seek from treatment is crucial for improving care. This study aims to explore how FI impacts patients' lives and identify important treatment outcomes as part of the development of a Core Outcome Set (COS). Patients with FI were recruited from outpatient clinics in the Netherlands. Semi-structured interviews were performed, audio recorded, transcribed per verbatim and coded. Thematic analysis was performed to identify (sub)themes and categories relevant to the patients. Twelve interviews were conducted before saturation was reached (75% female, 25% male, mean age 63, range 39-83 year). Four main themes emerged 'Physical symptoms', 'Impact on daily life', 'Emotional impact' and 'Coping'. Patients expressed how FI severely limits daily activities and emotional wellbeing. Treatment priorities centred on resuming normal activities rather than solely on symptom reduction. The impact of FI extends far beyond uncontrolled loss of faeces, affecting psychological, emotional, and social wellbeing. Patients prioritise outcomes focussed on reclaiming normalcy and independence rather than focusing on physical symptoms alone. Integrating these patient-centered outcomes in future studies could enhance treatment satisfaction and patient-perceived treatment success. Furthermore, the outcomes identified in this study can be included in a Delphi survey alongside other relevant outcomes, paving the way for the development of a COS.

Experience of Patients With Heroin Addiction Receiving Methadone Maintenance Treatment in Community Settings in Taiwan.

The World Health Organization has identified methadone maintenance therapy (MMT) as the most effective treatment for reducing patient dependence on heroin. In Taiwan, MMT has been used as a heroin harm reduction strategy since 2006. Although the effectiveness of MMT in reducing heroin addiction has been examined quantitatively in prison samples, little attention has been paid to the experiences and perspectives of patients with heroin addiction receiving MMT. This study was designed to address this gap in scientific knowledge. The aim of this study was to investigate the experiences of individuals struggling with heroin addiction who are receiving MMT in the community. A qualitative descriptive research approach and semistructured interviews were used in this study. We interviewed 14 participants who had received MMT in a medical center in central Taiwan. All of the interview data were recorded, transcribed, and analyzed using qualitative content analysis. Four themes emerged: (a) a chance to change one's life, (b) the helpfulness of MMT, (c) a sense of being restricted and controlled, and (d) need for support. This article fills a gap in current scholarly understanding of patient experiences and their perspectives on the helpfulness of MMT. Understanding patient experiences and perspectives is critical to informing and developing concrete strategies for clinical practice and MMT policy. Clinical professionals should assess patient needs and concerns to determine whether they are met by current treatment programs. Policymakers should design more flexible policies to facilitate easier access by patients to methadone to reduce the risk of relapse.

Assessment of Patient Satisfaction Regarding Clinic Visits in Riyadh, Kingdom of Saudi Arabia: A Cross-Sectional Study.

Background Understanding patient experiences and opinions is crucial to improving the quality of treatment given as healthcare services in Riyadh continue to expand. This study attempts to evaluate various aspects of patient satisfaction with clinic visits. Objectives To assess and analyze patient satisfaction with clinic visits in Riyadh, Kingdom of Saudi Arabia, in order to identify areas for improvement and enhance the overall quality of healthcare services in the region. Methods This cross-sectional study collected data from 350 adults aged 18 and above in Riyadh, Kingdom of Saudi Arabia. A paper-based questionnaire was distributed using a snowball convenience sampling technique at various locations. The survey assessed different aspects of patient satisfaction, including demographics, accessibility, quality of care, and patient experience. Ethical approval was obtained, and informed consent was acquired from all participants. Results The study's demographic distribution revealed that the majority of participants were female (77.4%), with the largest age group being 24-35 years old (34.9%). Saudi nationals constituted the majority (72.6%). Regarding accessibility and convenience of healthcare services, a significant proportion of participants agreed that the distance between their residence and the health center was reasonable (73.4%). However, opinions were mixed regarding waiting times, with some considering it reasonable (47.4%) and others disagreeing (25.4%). Participants also had varying views on appointment availability, with a notable percentage finding it difficult (33.7%). In terms of continuity of care and communication, most participants agreed that the clinic proactively contacts them for appointments (67.4%), but there were mixed responses regarding the ease of transferring patients to a hospital (37.7% agreed, 13.1% disagreed). The agreement on seeing the same doctor at each visit was moderate (41.1%), and a majority agreed that doctors had easy access to medical records (74.9%). Regarding the quality of care and patient experience, most participants agreed that doctors treated them with respect (83.7%) and that nurses and staff members were respectful and cooperative (54.3%). The majority agreed that health centers provided services during emergencies (78%). In terms of evaluating the quality of medical services and facilities, most participants agreed that vital signs were checked during each visit (78.6%), while satisfaction with laboratory facilities was moderate (60.3%). When it came to doctor-patient communication and counseling, most participants agreed that doctors provided detailed information about their disease and medications (73.4%) and addressed patients' queries (74.9%). However, some participants said that doctors did not inform them well about their disease (23.4%). Most participants agreed that doctors showed empathy and friendliness (73.7%) and allocated adequate time during visits (71.7%). However, satisfaction with post-visit accessibility to the doctor was mixed (35.1% agreed it was easy). Conclusion The findings revealed that while participants expressed satisfaction with certain aspects of care, there were areas requiring improvement. These areas included reducing waiting times, enhancing appointment availability, improving transfer procedures, ensuring consistency in doctor-patient relationships, and enhancing communication and counselling.

The lived experience of patients going under hyperbaric oxygen therapy in Saudi Arabia: A phenomenological study.

Hyperbaric oxygen therapy (HBOT) has emerged as an effective treatment or adjunct therapy for various disorders, prioritizing improving oxygen delivery to tissues. This qualitative inquiry aims to explore the psychological experiences of patients undergoing their first hyperbaric session, focusing on the emotional responses and information needs of patients. The study addresses the gap in understanding patient experiences and seeks to contribute to holistic care approaches and improved health outcomes for patients undergoing HBOT. Using a phenomenological-hermeneutical approach, this study engaged 6 participants from KAASH in Taif City who had undergone at least 1 HBOT session. Data were collected through in-person interviews using a semistructured guide, focusing on patients' initial HBOT experiences. Giorgi 4-step method was applied for data analysis, allowing for rich descriptions and thematic categorization of the participants' lived experiences. The analysis is centered around "Walking into the unknown" with emerged subthemes (feeling anxious or being calm; immediate or evolving outcomes; formal orientation and management; success stories and self-learning) organized under 2 revised categories, "Transitioning from fear to reassurance" and "Navigating the path of understanding." The study also highlighted the critical role of healthcare providers in addressing information gaps and enhancing patient preparedness. The findings revealed the importance of comprehensive patient education and effective communication by healthcare providers to alleviate initial fears and improve treatment experiences for HBOT patients. Future research should expand to other regions and include healthcare providers' perspectives to further validate these findings and enhance HBOT practices. Integrating psychological support into the treatment process may also benefit patients, promoting holistic care and improving overall health outcomes.

Addressing the gaps: What social media tells us about patient experiences with hypoglossal nerve stimulation

PurposeHypoglossal nerve stimulation (HNS) can be an effective treatment for moderate to severe obstructive sleep apnea (OSA) in positive airway pressure (PAP) intolerant patients. To better understand patient perceptions of HNS therapy, we explored three Facebook groups pertaining to HNS therapy. Materials and methodsA retrospective analysis of Facebook posts from three HNS-related Facebook groups, from October 1, 2022 to October 1, 2023, was performed. Posts were analyzed for author attitude, content (adverse events, inquiries, or sharing information), and the inclusion of media within the post. ResultsFrom 737 Facebook posts, 752 events were identified, predominantly authored by patients or family (99.5 %). Few posts included media attachments (7.3 %), primarily photos (85.5 %). Post tone was mainly neutral (79.4 %), rather than positive (12.9 %) or negative (7.7 %). Most posts (53.6 %) were queries to the Facebook group, as opposed to sharing information (28.9 %) or detailing adverse events (17.6 %). Notably queries posed by Facebook group members included those pertaining to the postoperative recovery course (10.17 %), physical activity restrictions (6.20 %), HNS therapy eligibility (4.71 %), financial considerations (4.22 %), and more. ConclusionOverall, Facebook group members reported a predominantly neutral tone, typically posting queries to the group rather than sharing information or detailing adverse events. These findings illustrate how diverse data sources, such as social media, can enhance our understanding of patient experiences and identify gaps in patient education with HNS therapy.

Understanding the experience, treatment preferences and goals of people living with chronic lymphocytic leukemia (CLL) in Australia

BackgroundListening to patient voices is critical, in terms of how people experience their condition as well as their treatment preferences. This research explored the patient journey, therapy attributes and goals among treatment experienced adults with chronic lymphocytic leukemia (CLL). We sought to understand patient experiences, needs and expectations to identify areas for improvement of treatment and care delivery.MethodsTwo online surveys were developed for completion by CLL patients. In Stage 1, participants completed a best-worst scaling (BWS) task to evaluate eleven previously validated healthcare journey moments that matter (MTM). Responses were used to generate the patient experience index (PEI) score. In Stage 2, participants completed a survey that included both a discrete choice experiment (DCE) to assess drivers of treatment preferences by evaluating the relative attribute importance (RAI) of seven features and a BWS exercise which explored long-term treatment goals.ResultsTwenty-five patients completed Stage 1 and thirty patients Stage 2. Treatment experience was balanced between oral and intravenous medication. The most important/least satisfied MTM were treatment effectiveness, access to support and other treatments as well as monitoring progress. The median PEI score was 66.2 (out of 100). DCE results demonstrated that patients most value treatments for CLL that are associated with prolonged progression free survival (PFS; RAI: 24.6%), followed by treatments that have a lower risk of severe side effects and lower out-of-pocket costs (RAI: 19.5%, 17.4%, respectively). The remainder of the weight in decision making (38.5%) was split between the remaining attributes, namely ‘mild to moderate side effects’ (13.4%), ‘long-term risks’ (12.2%), type of treatment (i.e., oral, IV or a combination of oral and IV; 8.7%) and treatment duration (i.e., ongoing versus fixed; 4.2%). Patients preferred oral to intravenous therapy. The most valued long-term treatment goal was to be physically healthy, followed by living a long life, spending time with family/friends, and avoiding hospitalization.ConclusionTreatment experienced patients with CLL are focused on receiving effective, safe therapies and value long PFS. Consideration and discussion of other attributes, such as once daily dosing, oral only medication, out-of-pocket costs and access to support services may affect patient treatment choices and ultimately enhance their healthcare experience and outcomes.

Patient experiences of undergoing abortion with and without an ultrasound scan in Britain

BackgroundRoutine ultrasound scanning to determine gestational age and pregnancy location has long been part of pre-abortion assessment in Britain, despite not being legally required or recommended in national clinical guidelines....

Troubled but in good hands: A qualitative study on patient experiences in diuresis renography examinations

IntroductionDiuresis renography is a nuclear medicine examination that can distinguish between obstructive and non-obstructive uropathy. Renography has been investigated before, but not from a patient perspective. The aim of this study was to gain knowledge and understanding of patient experiences with the diuresis renography process. MethodsThe study had a qualitative descriptive design; data was collected through semi-structured interviews with 17 adult patients that had recently undergone diuresis renography. The transcripts were analysed using inductive qualitative content analysis to identify their manifest and latent content. ResultsOne main theme was identified: ‘Not smooth all the way through, but still in good hands’. The participants understood the necessity of the performed renography and endured the examination despite its worrying elements. They were bothered by diuretic effects, worried about radioactivity and felt isolated during the imaging. The technologists' caring and informative approach eased their experience. The main theme was identified from three subthemes: ‘I experienced inconvenience’, ‘I was worried’ and ‘I felt safe’. ConclusionThe participants experienced worry throughout the renography process but were still satisfied with the examination, mostly because of the technologists being involved. Communication and interaction between patient and technologist are important for creating a good experience. Improved knowledge of patient experiences during renographies could be used to develop patient information and increase technologists’ awareness of factors patients may experience as troubling. Implications for practiceThis study describes issues that contribute to both negative and positive experiences. Improved professional awareness and knowledge about these issues can contribute to the development of patient information and professional encounters, and may improve patients’ compliance and overall experience.

Heart failure patients' experiences of telerehabilitation.

In the UK, almost 1 million people are living with heart failure, with heart and circulatory diseases accounting for 27% of all deaths, according to the British Heart Foundation. Current heart failure guidelines support cardiac rehabilitation as an intervention to reduce cardiovascular events, increase exercise tolerance and enhance patients' quality of life. Research indicates that telerehabilitation is an effective component of heart failure management, which helps overcome perceived barriers to cardiac rehabilitation including travel to appointments, long waiting times and accessibility. Understanding patient experiences and increasing telerehabilitation among heart failure patients is pertinent to implementing person-centred care, reducing risk and optimising quality of life.