Patient Experience Research Articles

Stigmatizing and affirming provider language in medical records on hospitalized patients with opioid use disorder.

Stigma within the healthcare environment limits access to treatment for opioid use disorder (OUD), even as OUD results in significant morbidity and mortality. Language in clinical documentation affects patient experience and future care through the transmission of stigma or positive regard. With the passage of the 21st Century Cures Act, patients have full access to their medical records online. The objective of our study was to understand providers' use of stigmatizing and affirming language in the electronic health record (EHR) for OUD patients with long hospital stays. We selected patients with a first-time referral to the Duke University Hospital OUD consult service who met diagnostic criteria for OUD with a hospital stay ≥28 days from July 2019 to February 2022. Two reviewers independently evaluated each admission and discharge note for stigmatizing or affirming language and the group met weekly to validate coding reliability. Forty-eight patients (96 notes) met our inclusion criteria. We identified 434 occurrences of stigmatizing and 47 occurrences of affirming language. One-third (34%) of stigmatizing language appeared in system-generated fields (drop-down categories and diagnosis codes) and the rest was authored by providers. Stigmatizing language was present in both provider- and system-generated language and was nine times more frequent than affirming language in the medical records of hospitalized patients with OUD. While provider education may reduce stigmatizing language, institutional level changes to the EHR and International Classification of Disease codes are necessary to decrease stigmatizing language within medical records.

Cardiac rehabilitation patient perspectives during COVID-19 pandemic: quantitative and qualitative study

BackgroundThis study aimed to quantitatively assess stress, anxiety and obsessive thinking related to coronavirus disease-19 (COVID-19) and qualitatively appraise perceptions in patients after acute myocardial infarction (AMI) undergoing cardiac rehabilitation (CR) during the COVID-19 pandemic.MethodsWe used mixed-methods design in patients referred for CR in 2 centres which delivered uninterrupted service during COVID-19 pandemic. Coronavirus Anxiety Scale (CAS), Obsession with COVID-19 Scale (OCS), COVID-19 Stress Scale (CSS), Hospital Anxiety and Depression Scale (HADS), and in-person interviews (combination of a priori questions and probing) were used to evaluate patient experience and perceptions with COVID-19 and the healthcare services during pandemic.ResultsIn total, 109 patients (mean age 59 ± 10, 20% women) were included in quantitative part and in 30 of them we conducted the in-person interviews. About a quarter of patients met HADS threshold for anxiety and depression while CAS and OCS results demonstrated extremely low possibility of coronavirus related dysfunctional thinking (3%) and anxiety (2%). The CSS indicated the most prevalent concerns were related to COVID-19 vaccines safety (60%) and fear of getting infected (60%). During interviews, patients perceived the CR as well as health care providers as safe, trustworthy and with enough support to avoid or manage COVID-19 related health risks.ConclusionsOverall, patients reported AMI affected their lives more than the COVID-19 pandemic. The COVID-19 related stress and anxiety were relatively low and mostly related to general views of infectious disease. CR was perceived safe and trustworthy in terms of primary disease and COVID-19.Lay summaryThis mixed-method study included 109 patients with acute myocardial infarction who underwent cardiac rehabilitation during the COVID-19 and focused on their experience and perceptions with COVID-19 and the healthcare services during pandemic.-Patients reported acute myocardial infarction affected their lives more than the COVID-19 pandemic.-The COVID-19 related concerns were mostly related to general views of infectious disease (vaccine safety, fear of getting infected) whilst cardiac rehabilitation was perceived safe and trustworthy environment during COVID-19.

AI and Conventional Techniques used for Drugs and Orthodontic Tooth Movement

Artificial Intelligence (AI) is emerging as a transformative force in both drug development and orthodontics. This paper provides an overview of key AI techniques employed in these fields. In drug development, AI is accelerating discovery, development, and delivery through generative models, predictive modeling, image analysis, and natural language processing. Orthodontics benefits from AI through image analysis, treatment planning, and patient experience enhancement. Common AI techniques in both domains include machine learning, deep learning, natural language processing, and computer vision. By leveraging these technologies, researchers and clinicians can achieve significant advancements in drug discovery, treatment efficacy, and patient care.

Breast Radiation Therapy Survivorship and Cancer Support Groups: an Opportunity for Community Engagement and Education Through the Addressing Breast Cancer Dermatologic Side Effects (ABCDEs) Program.

Breast cancer is the most commonly diagnosed cancer and the second leading cause of cancer deaths in women in the USA. To serve under-insured breast cancer patients in South Texas, we designed a patient education program to improve health literacy of secondary dermatologic changes after completing radiation therapy.A needs assessment survey was distributed to better understand the patients' stage of treatment, experiences with radiation-induced dermatologic side effects, and over-the-counter skin products and home remedies used.Of the 33 patients that participated in this program, nearly all patients (93.94%, n = 31) are either currently undergoing treatment or have completed treatment. Of the 31 individuals, 74.19% of patients (n = 23) have completed treatment at least 9-12months ago, 22.58% (n = 7) are currently receiving chemotherapy, and 3.23% (n = 1) are currently undergoing radiation therapy. Among the dermatologic side effects, patients experienced changes to skin color, redness, and burns/burning sensation at the greatest severity. The top products used by survey participants were prescription-strength topical corticosteroids (65.63%) followed by oral analgesics (28.13%) and compression sleeves (25.00%). Aloe vera (15.63%) was the most used complementary and alternative therapeutic treatment. By surveying experiences of radiation-induced dermatologic side effects in predominantly under-resourced and minority communities, we can better tailor patient education programs to reflect patients' experiences. Overall, this program can enhance clinicians' insight on under-resourced patient experiences to improve health literacy and dispel common misconceptions surrounding breast cancer treatment, management, and survivorship.

Patients' Perspective On The Inclusion Of Intraoral Scanners In Routine Examination: A Clinical Perception Study.

Is to investigate how integrating intraoral scanners in routine oral diagnosis affects patient-clinician communication, patient perceptions and preferences, offering valuable insights into the patient experience and utility of intraoral scanners in clinical practice. A restorative dentistry specialist conducted intraoral examination on 300 patients, initially using conventional techniques and X-rays, followed by a 3D scanner (ITero®element, Align Technologies, San Jose, California, USA). The patient's existing oral issues and treatment plan were initially expressed verbally, and then repeated using a 3D scan. Subsequently, the patients were requested to respond to an 11-question survey, aimed at assessing both modes of examination and communication. Statistical analysis using SPSS v.22 software included employing the Wilcoxon test to compare the patients' experiences on the same topic before and after the examination with the intraoral scanners, considering significance at p<0.05. Majority (38%) of participants aged 25-35. Gender split was 52% female, 48% male. Patients statistically found it more comprehensible to visualize existing oral issues through 3D scans than through verbal explanation (p&#61;0.000). Also, patients understood oral hygiene recommendations better when explained via 3D scanning by dentists (p&#61;,000). The vast majority of the participants (94%) indicated that being examined with an intraoral scanner motivated them for treatment, while 6% remained undecided. A hundred percent of the participants stated that 3D scanners should be included in the routine oral examination. Intraoral 3D scans enhance patient understanding and communication during oral examination and participants show high preference. However, more research needed to replace conventional diagnostic methods.

Experiences of older people with multimorbidity regarding self-management of diseases: A systematic review and qualitative meta-synthesis.

This qualitative systematic review aimed to consolidate existing evidence on the self-management experience of older patients with multimorbidity worldwide. Nine databases were searched, for papers published from database inception to April 2023. The systematic review was conducted according to the systematic review method of qualitative evidence by the Joanna Briggs Institute (JBI). Seven studies were included. Finally, four themes and 12 subthemes were formed: (1) physical level: reduced physical function and lack of coordinated care; (2) psychological level: mental state of anxiety and positive attitude towards life; (3) social level: technical support, support from family, support from healthcare workers and support from others; and (4) practical level: economic burden, lifestyle changes, self-care in daily life and compliance was much lower than expected. To improve self-management in older people with multimorbidity, nurses should provide more guidance to patients to improve their self-management skills, and clinicians should recommend effective self-management behaviours.

In many voices: exploring end-of-life care through patient, caregiver and physician narratives

As the focus on end-of-life care intensifies, so too does the need to better understand the experiences of patients, caregivers and physicians. Delivering empathetic care requires a shared understanding of...

Photovoice Project for a Family and Societal Nursing Course.

Aesthetic knowing requires an understanding of human experience while personal knowing requires self-reflection and awareness. Photovoice and arts-based learning utilizes different forms of art to elicit abstract and critical thinking and reflection skills in students. A photovoice project was assigned to first-semester nursing students to think about and reflect on human experiences of patients, families, and themselves in the nursing role. Items on a course evaluation gauged how students felt the project contributed to their learning. Many students appreciated the different approach to learning and liked the chance to be creative. The project also required students to review the contents of the course for a final presentation. The photovoice project contributes to the development of aesthetic and personal ways of knowing and helps students meet course objectives. The photovoice project is an effective and innovative way to develop aesthetic and personal knowing in nursing students. [J Nurs Educ. 2024;63(X):XXX-XXX.].

Positive association between patient experience of primary care with chronic disease and self‐rated health in a Japanese rural area: A cross‐sectional questionnaire survey using the Japanese primary care assessment tool short form

Positive association between patient experience of primary care with chronic disease and self‐rated health in a Japanese rural area: A cross‐sectional questionnaire survey using the Japanese primary care assessment tool short form

Brief of over 300 reproductive health researchers as Amici Curiae in FDA v. Alliance for Hippocratic Medicine.

On January 30, 2024, over 300 researchers filed an amicus brief in FDA v. Alliance for Hippocratic Medicine, a United States (US) Supreme Court case that could have severely impacted access to mifepristone, one of the two drugs commonly used in medication abortion. The researchers summarize the legal challenges to the US Food and Drug Administration's (FDA's) original approval of mifepristone in 2000 and its 2016 and 2021 decisions modifying mifepristone's Risk Evaluation and Mitigation Strategy (REMS) Program and label, the responses from the FDA and drug manufacturer to the challenges, and the potential implications of the Court's decision on access to mifepristone in the US. The researchers detail how the FDA relied on a robust scientific record analyzing tens of thousands of patient experiences that conclusively demonstrated the safety and effectiveness of the changes to the mifepristone REMS Program and label and urge the Supreme Court to rely on the clear scientific record and preserve access to mifepristone without reimposing restrictions. What follows is a reprint of this brief.

Factors associated with patients' experience of access to their multidisciplinary primary health care clinic: A multilevel analysis.

Understanding patients' experiences accessing primary health care (PHC) is necessary to improve service organisation. This study aims to examine individual, organisational, and contextual factors associated with patients' experience of accessing the multidisciplinary PHC clinic to which they are attached. This cross-sectional study builds on survey data collected in multidisciplinary PHC clinics located in 14 regions in the province of Quebec (Canada). Between September 2022 and June 2023, an online questionnaire was sent to patients with an email contact and attached to a family physician. Two patient-reported experience measures were assessed: (1) difficulty obtaining an appointment with their regular family physician or nurse practitioner and (2) perceived unmet healthcare needs. A self-reported online questionnaire based on the advanced access model was also sent to PHC professionals and administrative staff to assess the use of advanced access strategies in their practice. Multilevel logistic regression models were fit. Stratified analyses were conducted according to the number of consultations received. In total, 122,397 patients and 847 family physicians, 97 nurse practitioners and 347 administrative staff nested into 104 clinics answered the survey. In the overall sample, having a chronic disorder was the only individual factor associated with the patient experience of access. Organizational factors including estimation of demand and supply, use of a referral algorithm, and strategies to optimise consultations were associated with a better access experience. Patients from medium size clinics compared to small clinics had better experiences of care for both outcomes. Stratified analysis indicated similar results for patients who consulted at the clinic 1-5 times in the last 12months as observed in the overall sample. This study indicates that enhancing organizational processes can improve patients' access experiences.

Clinical Outcomes and Experiences with Prefilled Syringes Versus Vials for Intravitreal Administration of Anti-VEGF Treatments: A Systematic Review.

Anti-vascular endothelial growth factor (VEGF) agents have been the standard treatment for retinal diseases for almost two decades. These treatments are administered via intravitreal injection using single-use vials or prefilled syringes (PFS). In this systematic review, we evaluate health care resource use and clinical outcomes and experiences with PFS for intravitreal injection of anti-VEGF treatments. MEDLINE, EMBASE, and The Cochrane Library were searched from January 1, 2015 to February 8, 2024 to identify literature reporting outcomes regarding procedural efficiency, health care resource use, patient and clinician experiences, and safety for currently approved anti-VEGFs (ranibizumab, aflibercept, brolucizumab) administered using PFS. Comparators were vial-based injections of the same anti-VEGFs. A total of 36 publications met the criteria for inclusion in the systematic literature review; the majority were non-randomized studies, with a small number of reviews, case series, survey studies, and opinion articles. Publications reported that preparation times were significantly shorter for PFS (40.3-57.9s) versus vials (ranibizumab, 62.8-98.0s; aflibercept, 71.9-79.5s), with no differences in product stability between PFS and vials. Clinicians expressed a preference for PFS and thought PFS were faster, easier to use, and had increased safety versus vials. Publications consistently reported significantly lower rates of endophthalmitis per injection with PFS versus vials (ranibizumab PFS, 0-0.02%; aflibercept PFS, 0.01-0.02%; ranibizumab vial, 0.02-0.05%; aflibercept vial, 0.02-0.06%). Four publications reported increased rates of transient vision loss after aflibercept PFS injection versus vial-based injection. No publications reported outcomes regarding health care resource use or patient experiences. The available literature supports the increased procedural efficiency of PFS versus vial-based intravitreal injection of anti-VEGFs. PFS are positively perceived by clinicians and have a safety benefit in the form of a decreased risk of endophthalmitis versus vials.

Experiences of patients with endometriosis with a digital health application: a qualitative analysis.

Endometriosis is a frequent disease in women of reproductive age in which the endometrium occurs outside the uterine cavity. Multimodal treatment approaches are necessary due to loss of quality of life and the chronic nature of the disease. Digital health applications (DiGa) are becoming increasingly important. This research project investigates how a healthcare app can influence the subjective experience of illness in patients with endometriosis. Empiric data were collected through semi-structured interviews. Data analysis was carried out using qualitative focussed interview analysis. Reliability was ensured by joint interdisciplinary and interprofessional evaluation of the interviews by experts and those affected. Ten patients with endometriosis and the prescribed healthcare app Endo-App© were examined. Categories were defined from the superordinate categories "Factors influencing the experience of illness" and "Evaluation of the app". The app provided reliable information, promoted self-efficacy through exercises and strengthened the perception of the individuality of the illness. It helped to minimise nocebo effects from internet research and enabled a positive change of perspective. Patients criticised the time required for data input and had data protection concerns. The educational elements were often seen as redundant. Some patients only used the app briefly, or not at all. Once a DiGa has been prescribed, it may be useful to explain its use on an outpatient basis and validate regular use. Blind re-prescribing of DiGas should be avoided. Younger patients with a recent diagnosis or patients following rehabilitation may benefit more from prescribing.

Acceptability and usability of a nurse-assisted remote patient monitoring intervention for the post-hospital follow-up of patients with long-term illness: A qualitative study

BackgroundPatients living with long-term chronic illnesses often need ongoing medical attention, lifestyle adjustments, and psychosocial support beyond the initial diagnosis and treatment phases. Many experience illness deterioration and subsequently require hospitalisation, especially in the transition period after hospital discharge. A promising strategy for managing long-term conditions is promoting self-management. eHealth interventions involving remote patient monitoring have the potential to promote self-management and offer a more seamless bridge between the hospital and the patient´s home environment. However, such interventions can only significantly impact health and health care if they are effective, accepted and adopted by users, normalised into routine practice and everyday life, and able to be widely implemented. Feasibility studies are used to determine whether an intervention is suitable for the target population and effective in achieving its intended goal. They may also provide critical information about an intervention´s acceptability and usability. ObjectivesWe aimed to evaluate the acceptability and usability of a nurse-assisted remote patient monitoring intervention for the post-hospital follow-up of patients with long-term illnesses by use of the core constructs of normalisation process theory. DesignA descriptive and explanatory qualitative approach was used, with patients observed during training and semi-structured interviews conducted with patients and nurses after study completion. SettingsParticipants were recruited from two university hospitals in Norway between December 2021 and February 2023. ParticipantsTen patients were observed during training, and 27 patients and eight nurses were interviewed after study completion. MethodsStructured and overt observations were made while the patients received training to operate the remote patient monitoring service, guided by an observation guide. Semi-structured interviews were conducted with patients and nurse navigators about their experiences of remote follow-up care, guided by open ended questions. Data analysis followed a stepwise deductive inductive method. Results`Achieving acceptance and usability through digital social interaction´ emerged as a unifying theme that bridged the experiences of patients with long-term illnesses and the nurse navigators. This overarching theme was illustrated by four sub-themes, which all reflected the usability and acceptability of the nurse-assisted remote patient monitoring service in various ways. ConclusionAcceptability and usability are critical factors to consider when evaluating remote patient monitoring interventions. In this study, the most important feature for promoting acceptability and usability was the interaction between patients and nurse navigators. Therefore, the intervention´s feasibility and implementation potential rested upon the relationship between its deliverer and receiver.

The Significance of Enhancing Health Workers' Skills and Knowledge in Driving Positive Patient Experiences

The Significance of Enhancing Health Workers' Skills and Knowledge in Driving Positive Patient Experiences

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

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

Is the Compassion of Anesthesiologists Associated With Postoperative Pain and Patient Experience? A Prospective Cohort Study.

Patient perception of physician compassion may be associated with improved health outcomes, yet it is unclear whether it is associated with postoperative pain reduction or improved patient experience metrics in same-day surgery patients. We hypothesized that higher anesthesiologist compassion during the preanesthesia interview, rated by patients, is associated with lower postoperative pain via the anxiety pathway in same-day surgery patients. We also performed exploratory correlation analysis to assess whether compassion was associated with less opioid consumption and improved patient experience in same-day surgery patients. We conducted a single-center, prospective, observational cohort study in American Society of Anesthesiologists (ASA) physical status I to III patients scheduled to undergo same-day surgery with anesthesia. Compassion was scored using a validated 5-item tool. State anxiety (SA) and trait anxiety (TA) were measured using the State-Trait Anxiety Inventory. Pain scores were obtained using a 0 to 10 Likert scale. Daily opioid use was recorded. Patient experience was assessed using the Consumer Assessment of Healthcare Providers and Systems Outpatient and Ambulatory Surgery Survey (OAS CAHPS) and the Surgical Care CAHPS. Mediation analysis was used to assess the association between compassion and pain scores via the anxiety pathway. Spearman correlation was performed to test for association between the compassion score and the secondary outcomes. A total of 147 subjects completed the study with a median age of 50 years and 81% female. Fifty percent underwent breast surgery, 35% abdominal surgery, and the rest underwent gynecological and urological surgeries. The median (Q1-Q3) postoperative pain scores on postoperative days 0 and 3 days later were 4 (1.5-6) and 3 (1-5), respectively.Mediation analysis results showed a same-day anxiety-mediated effect (95% confidence interval [CI]) of compassion on pain of -0.08 (-0.13 to -0.02), attributing to 9% of the total effect. On postoperative day 0, an increase in compassion was associated with a significant average drop in pain of between 0.02 and 0.13. In addition, higher compassion was correlated with better patient experience metrics (ρ= -0.53 [95% CI, -0.64 to -0.39]). The study results suggest that an anxiety-mediated pathway exists through which compassionate care may help improve the patient's perception of postoperative pain on the day of surgery (before discharge from the hospital). Higher compassion was also associated with better patient experience metrics.

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.

Quality of Life After Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy (CRS/HIPEC): Cancer Survivors' Perspective Through In-Depth Interviews.

CRS/HIPEC patients face unique quality of life (QoL) challenges due to advanced disease (peritoneal carcinomatosis), the extent of procedure, and risk for long-term complications. Standard QoL questionnaires are generic, focusing on tumor type and standard treatments, and likely do not capture this select population's full experience, suggesting the need for tailored instruments. We aimed to characterize the QoL challenges faced by CRS/HIPEC cancer survivors and determine whether these were captured by astandard QoL questionnaire. An anonymous, semi-structured individual interview was conducted with CRS/HIPEC patients addressing their experience at diagnosis, challenges related to CRS/HIPEC, and access to CRS/HIPEC information. Verbatim transcripts were interpreted using thematic analysis. Code and theme identification was inductive. Questions addressing common themes that were not encompassed by astandard QoL questionnaire were developed. We interviewed eight patients. Median age was 55 (range 30-71) years and 75% (n = 6) were women. Primary tumor sites included appendix (n = 4), ovarian (n = 3), and peritoneal mesothelioma (n = 1). Median time from CRS/HIPEC was 40.1 (range 3.1-216.3) months. Overall, 133 codes were identified and categorized into 9 themes. The most recurring were physical symptoms after CRS/HIPEC (specifically gastrointestinal symptoms), adjusting to survivorship, mental health, expectations from CRS/HIPEC, and access to care. A total of 22 questions that did not overlap with a standardized QoL questionnaire were developed. There is an unmet need to understand the unique QoL challenges CRS/HIPEC patients encounter. Patient-centered QoL questionnaires based on CRS/HIPEC patient experiences can capture these unique challenges and help guide future studies and care.

Patient Experience and Feasibility of a Remote Monitoring System in Parkinson's Disease.

Remote monitoring systems have the potential to measure symptoms and treatment effects in people with Parkinson's disease (PwP) in the home environment. However, information about user experience and long-term compliance of such systems in a large group of PwP with relatively severe PD symptoms is lacking. The aim was to gain insight into user experience and long-term compliance of a smartwatch (to be worn 24/7) and an online dashboard to report falls and receive feedback of data. We analyzed the data of the "Bringing Parkinson Care Back Home" study, a 1-year observational cohort study in 200 PwP with a fall history. User experience, compliance, and reasons for noncompliance were described. Multiple Cox regression models were used to identify determinants of 1-year compliance. We included 200 PwP (mean age: 69 years, 37% women), of whom 116 (58%) completed the 1-year study. The main reasons for dropping out of the study were technical problems (61 of 118 reasons). Median wear time of the smartwatch was 17.5 h/day. The online dashboard was used by 77% of participants to report falls. Smartphone possession, shorter disease duration, more severe motor symptoms, and less-severe freezing and balance problems, but not age and gender, were associated with a higher likelihood of 1-year compliance. The 1-year compliance with this specific smartwatch was moderate, and the user experience was generally good, except battery life and data transfer. Future studies can build on these findings by incorporating a smartwatch that is less prone to technical issues.