Identifying the drivers of overall rating of cancer care: Insights from the second wave of the Swiss Cancer Patient Experiences study.

BACKGROUND: Patient experience surveys gather information on various aspects of care via numerous survey items. Identifying the most critical areas of patient experience to prioritize for quality care improvement can be challenging. The objective of this study was to determine which care experience items are the drivers influencing patients' overall rating of cancer care. METHODS: Data from 2750 adult patients with cancer from the second wave of the Swiss Cancer Patient Experiences study were analyzed. This cross-sectional survey was conducted in eight Swiss hospitals from September 2021 to February 2022. Stepwise logistic regression examined the relationship between overall care rating and 29 patient experience items covering different patient-centered care dimensions while adjusting for sociodemographic and health variables. RESULTS: Overall, patients rated their cancer care experience at 8.9 out of 10. Stepwise regression identified seven drivers contributing to overall care rating. The strongest drivers were "professionals worked well together" (odds ratio [OR], 4.81) and "tests were not repeated" (OR, 2.09) from the coordination and integration dimension, "offered support for symptoms during treatment" (OR, 2.11) from the physical comfort dimension, followed by "hospital staff ensured available home support" (OR, 1.99), "offered to see health professional for concerns" (OR, 1.91), "treatment options were explained" (OR, 1.75), and "involved in treatment decisions as desired" (OR, 1.68). CONCLUSIONS: This study evaluated the care experiences of patients with cancer with a comprehensive tool that identified seven key factors independently associated with overall care rating. By concentrating on these areas, hospitals can not only improve the patient care experience but also efficiently allocate resources to quality improvement initiatives.

Practical Use of Self-Adjusted Nitrous Oxide During Transrectal Prostate Biopsy: A Double-Blind Randomized Controlled Trial.

PURPOSE: Transrectal prostate biopsy is a common ambulatory procedure that can result in pain and anxiety for some men. Low-dose, adjustable nitrous oxide is increasingly being used to improve experience of care for patients undergoing painful procedures. This study seeks to evaluate the efficacy and safety of low-dose (<45%) nitrous oxide, which has not been previously established for transrectal prostate biopsies. MATERIALS AND METHODS: A single-institution, prospective, double-blind, randomized, controlled trial was conducted on patients undergoing transrectal prostate biopsies. Patients were randomized to receive either self-adjusted nitrous oxide or oxygen, in addition to routine periprostatic bupivacaine block. Nitrous oxide at levels between 20% and 45% were adjusted to patients' desired effect. Patients completed a visual analog scale for anxiety, State Trait Anxiety Inventory, and a visual analog scale for pain immediately before and after biopsy. The blinded operating urologist evaluated ease of procedure. Periprocedural vitals and complications were assessed. Patients were allowed to drive home independently. RESULTS: A total of 133 patients received either nitrous oxide (66) or oxygen (67). There was no statistically significant difference in the primary anxiety end point of State Trait Anxiety Inventory or the visual analog scale for anxiety scores between the nitrous oxide and oxygen groups. However, patients in the nitrous oxide group reported significantly lower visual analog scale for pain scores compared to the oxygen group (P = .026). The operating urologists' rating of tolerance of the procedure was better in the nitrous oxide group (P = .03). There were no differences in biopsy performance time. Complications were similarly low between the 2 groups. CONCLUSIONS: Patient-adjusted nitrous oxide at levels of 20% to 45% is a safe adjunct during transrectal prostate biopsy. Although there was not an observed difference in the primary end point of anxiety, nitrous oxide was associated with lower patient-reported pain scores.

Mpox patients' experience from infection to treatment and implications for prevention and control: A multicenter qualitative study in China.

Monkeypox (mpox), a viral zoonotic disease, is spreading worldwide. However, evidence that informs prevention and control strategies in the Asia Pacific Region is very limited. Our study aims to investigate the experiences of mpox patients from infection to treatment to provide scientific basis for the prevention and control. A multicenter qualitative design was used. A total of 15 mpox patients were recruited between July 6 and July 25, 2023, from six cities in China. Semistructured interviews were conducted by telephone and analyzed using the thematic analysis. The interview was divided into two sections: patients' experiences (prediagnosis experience, treatment-seeking experience, and quarantine experience) and advice. Prediagnosis experience was summarized into three themes: symptoms, possible routes of infection, and knowledge of mpox. Treatment-seeking experience was summarized into three themes: time of visit to hospital, diagnostic difficulties, and attitude toward diagnosis. Quarantine experience was summarized into three themes: body and mind reactions, reluctance to self-disclose infection status, and factors facilitating recovery. Themes identified from patients' advice were as follows: (1) Increase in testing channels and methods, (2) Development and introduction of vaccines, (3) Adjustment of quarantine program, (4) Improvement of treatment measures, and (5) Improvement of publicity and education. To effectively curb the mpox epidemic, structured measures are urgently needed to address the mpox-related stigma and discrimination. Targeted health education should be provided to MSM, focusing on the prevention, detection, and treatment services. Hospitals should enhance the training of clinicians in key departments including infectious disease and dermatology, to improve diagnostic capability and sensitivity. Furthermore, given the absence of specific antiviral medications, supervised home quarantine may be a good option.

Understanding Patient Experiences to Inform Future Studies to Optimize Personalization of Treatment for Early Breast Cancer.

BACKGROUND: Breast cancer treatment is multimodal, but not all patients benefit from each treatment, and many experience morbidities significantly impacting quality of life. There is increasing interest in tailoring breast cancer treatments to optimize oncological outcomes and reduce treatment burden, but it is vital that future trials focus on treatments that most impact patients. This study was designed to explore patient experiences of treatment to inform future research. METHODS: An online survey was co-developed with patient advocates to explore respondents' experiences of breast cancer treatment. Questions included simple demographics, treatments received, and views regarding omitting treatments if that is deemed safe. The survey was circulated via social media and patient advocacy groups. Responses were summarized by using simple statistics; free text was analyzed thematically. RESULTS: Of the 235 participants completing the survey, 194 (82.6%) would choose to omit a specific treatment if safe to do so. The most commonly selected treatments were chemotherapy (n = 69, 35.6%) and endocrine therapy (n = 61, 31.4%) mainly due to side effects. Fewer respondents would choose to omit surgery (n = 40, 20.6%) or radiotherapy (n = 20, 10.3%). Several women commented that survival was their "absolute priority" and that high-quality evidence to support the safety of reducing treatment would be essential. CONCLUSIONS: Patients with breast cancer are individuals who may wish to optimize different components of their treatment. A portfolio of studies co-designed with patients is needed to establish an evidence base for greater treatment personalization with studies focused on reducing avoidable chemotherapy and endocrine therapy a priority.

Assessing the acceptability and feasibility of remote spirometric monitoring for rural patients with interstitial lung disease: a multimethod approach.

INTRODUCTION: Interstitial lung disease encompasses a group of rare lung conditions causing inflammation and scarring of lung tissue. The typical method of monitoring disease activity is through pulmonary function tests performed in a hospital setting. However, accessing care can be difficult for rural patients due to numerous barriers. This study assesses the feasibility and acceptability of home spirometry telemonitoring using MIR-Spirometers and the patientMpower home-monitoring platform for rural patients with interstitial lung disease. METHODS: Unblinded, uncontrolled, prospective, multiple-methods study of the feasibility and utility of remote monitoring of 20 rural subjects with interstitial lung disease. Study assessments include adherence to twice weekly spirometry for 3 months in addition to mMRC dyspnea and EQ-5D-5L health-related quality of life questionnaires with each spirometry maneuver. Upon completion, subjects were encouraged to complete an 11-question satisfaction survey and participate in semi-structured qualitative interviews to further explore expectations and perceptions of rural patients to telehealth and remote patient monitoring. RESULTS: 19 subjects completed the 3-month study period. Adherence to twice weekly spirometry was mean 53% ± 38%, with participants on average performing 2.26 ± 1.69 maneuvers per week. The median (Range) number of maneuvers per week was 2.0 (0.0, 7.0). The majority of participants responded favorably to the patient satisfaction survey questions. Themes regarding barriers to access included: lack of local specialty care, distance to center with expertise, and time, distance, and high cost associated with travel. Remote monitoring was well perceived amongst subjects as a way to improve access and overcome barriers. CONCLUSIONS: Remote spirometry monitoring through web-based telehealth is acceptable and feasible for rural patients. Perceived benefits include overcoming access barriers like time, distance, and travel costs. However, cost, reimbursement, and internet access must be addressed before implementing it widely. Future studies are needed to ensure long-term feasibility and to compare outcomes with usual care.

Visit Experience and Fulfillment of Care Needs in Primary Care Differs for Video Visits Compared to In-person and Chat Visits.

BACKGROUND: There is a lack of research comparing patient experience and to what extent patients' care needs are fulfilled in telemedicine compared to in-person care. OBJECTIVE: To investigate if patient experience and fulfillment of care needs differ between video and chat visits with direct to consumer telemedicine providers compared to in-person visits. DESIGN: Cross-sectional study. PARTICIPANTS: Adults visiting a primary care physician in person or via chat or video in Region Stockholm, Sweden, October 2020-May 2021. MAIN MEASURES: Patient-reported visit experience and fulfillment of care needs. KEY RESULTS: The sample included 3315 patients who had an in-person (1950), video (844), or chat (521) visit. Response rates were 42% for in-person visitors and 41% for telemedicine visitors. Patients were 18-97 years old, mean age of 51 years, and 66% were female. In-person visitors reported the most positive patient experience ("To a very high degree" or "Yes, completely") for being listened to (64%), being treated with care (64%), and feeling trust and confidence in the health care professional (76%). Chat visitors reported the most positive patient experience for being given enough time (61%) and having care needs fulfilled during the care visit (76%). Video visitors had the largest proportion of respondents choosing "To a very low degree" or "No, not at all" for all visit experience measures. There were statistically significant differences in the distribution of visit experiences between in-person, video, and chat visits for all visit experience measures (P < 0.001). CONCLUSIONS: Video visits were associated with a more negative visit experience and lower fulfillment of care needs than in-person visits. Chat visits were associated with a similar patient experience and fulfillment of care needs as in-person visits. Chat visits may be a viable alternative to in-person visits for selected patients.

Prescribing and Acceptance of Medications for Opioid Use Disorder in VA Primary Care: Veteran and Provider Perspectives.

BACKGROUND: Medications to treat opioid use disorder (MOUD) such as buprenorphine/naloxone can effectively treat OUD and reduce opioid-related mortality, but they remain underutilized, especially in non-substance use disorder settings such as primary care (PC). OBJECTIVE: To uncover the factors that can facilitate successful prescribing of MOUD and uptake/acceptance of MOUD by patients in PC settings in the Veterans Health Administration. DESIGN: Semi-structured qualitative telephone interviews with 77 providers (e.g., primary care providers, hospitalists, nurses, addiction psychiatrists) and 22 Veteran patients with experience taking MOUD. Interviews were recorded, transcribed, and analyzed thematically using a combination a priori/inductive approach. KEY RESULTS: Providers and patients shared their general perceptions and experiences with MOUD, including high satisfaction with buprenorphine/naloxone with few side effects and caveats, although some patients reported drawbacks to methadone. Both providers and patients supported the idea of prescribing MOUD in PC settings to prioritize patient comfort and convenience. Providers described individual-level barriers (e.g., time, stigma, perceptions of difficulty level), structural-level barriers (e.g., pharmacy not having medications ready, space for inductions), and organizational-level barriers (e.g., inadequate staff support, lack of nursing protocols) to PC providers prescribing MOUD. Facilitators centered on education and knowledge enhancement, workflow and practice support, patient engagement and patient-provider communication, and leadership and organizational support. The most common barrier faced by patients to starting MOUD was apprehensions about pain, while facilitators focused on personal motivation, encouragement from others, education about MOUD, and optimally timed provider communication strategies. CONCLUSIONS: These findings can help improve provider-, clinic-, and system-level supports for MOUD prescribing across multiple settings, as well as foster communication strategies that can increase patient acceptance of MOUD. They also point to how interprofessional collaboration across service lines and leadership support can facilitate MOUD prescribing among non-addiction providers.

Effect of Clinician Posture on Patient Perceptions of Communication in the Inpatient Setting: A Systematic Review.

BACKGROUND: Nonverbal communication plays a pivotal role in the provision of effective patient care and has been associated with important patient health outcomes. Clinician posture, a nonverbal form of communication, may influence the patient experience and satisfaction. The relationship between clinician posture (i.e., standing or at the patient's eye level) and patient perceptions of clinician communication in the hospital-a setting with heightened power dynamics between patient and clinician-is currently unknown. METHODS: We conducted searches of Ovid MEDLINE, EBSCO CINAHL Complete, EBSCO PsycInfo, Elsevier Embase/Embase Classic, Elsevier Scopus, and Web of Science Core Collection up to May 2023. English language studies were included if they compared clinician posture (eye-level or standing) during adult inpatient (including emergency department) interactions. Two authors independently abstracted data from included studies and assessed risk of bias or quality of evidence. A third author arbitrated any disagreements. Studies reported adherence to the posture intervention and/or patient perception outcomes. The latter included encounter duration, preferences for posture type, perceptions of interaction quality and clinician communication and compassion, and standardized assessments of patient satisfaction. RESULTS: Fourteen studies (six randomized controlled trials, four quasi-experimental studies, four observational studies) assessed clinician posture at the bedside. Ten noted at least one favorable outcome for clinicians who communicated at the patient's eye level, three revealed no differences in patient perceptions between standing and sitting, and one noted higher patient ratings for standing clinicians. Findings were limited by variation in interventions and outcomes, generally high risk of bias, and relatively low adherence to assigned posture groups. DISCUSSION: Compared to standing, eye-level communication by clinicians appears beneficial. The magnitude and types of benefits clinicians and patients may gain from this behavior remain unclear given heterogeneity and generally high risk of bias in available studies. With its relatively easy implementation and potential for benefit, clinicians should consider communicating with their hospitalized patients at eye level. REGISTRATION: PROSPERO, CRD42020199817.

Differential Effect of Patient- and Provider-Level Factors on Patient Satisfaction Scores in Academic General Internal Medicine Clinics.

OBJECTIVE: Determine whether patient-level or provider-level factors have greater influence on patient satisfaction scores in an academic general internal medicine clinic. METHODS: Two years of data (2017-2019) from the Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CGCAHPS) surveys from ambulatory internal medicine clinic visits in an academic health center located in the Midwest United States were used. Patient satisfaction was measured using the overall provider satisfaction score (0-10), dichotomized with 9-10 defined as satisfactory and 0-8 as unsatisfactory. Provider-level independent variables included age, sex, race/ethnicity, provider type, service type, clinical effort, academic rank, and years since graduation. Patient-level factors included age, sex, race/ethnicity, education, and Epic Risk Score. Generalized mixed-effects logistic regression models were used to investigate associations between top-box satisfaction score and patient- and provider-level factors, accounting for the nesting of patients within providers. RESULTS: Thirty-three providers and 4597 patients were included in the analysis. Male providers (OR, 1.57; 95% CI, 1.00, 2.47), minority group 2 (OR, 3.54; 95% CI, 1.24, 10.07) and minority group 3 (OR, 6.04; 95% CI, 1.45, 25.12), faculty (OR, 3.83; 95% CI, 1.56, 9.36), and primary care providers (OR, 5.60; 95% CI, 1.62, 19.34) had increased odds of having a top-box rating compared with females, minority group 1, advanced practice providers, and perioperative providers respectively. Age was the only patient independent correlate of top-box rating with a 3% increased odds of top-box rating for every year increase in age (OR, 1.03; 95% CI 1.02, 1.03). CONCLUSIONS: In this academic general internal medicine clinic, top-box satisfaction scores were more strongly associated with provider-level factors, including provider race/ethnicity, provider type, and service type, as opposed to patient-level factors. Further research is needed to confirm these findings and identify potential system-level interventions.

Development and validation of a patient reported experience measure for experimental cancer medicines (PREM-ECM) and their carers (PREM-ECM-Carer).

BACKGROUND: Our aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM. METHODS: Mixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility. RESULTS: Initial interview participants suggested the need for three PREMs, two specific to patients: (i) a 'prior' questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) 'on-trial' that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item 'prior' questionnaire was completed by 162 patients and 162 patients completed the draft 35-item 'on-trial' questionnaire. Hierarchical and Rasch analysis produced a 14-item 'prior' list and a 15-item list for 'on-trial'. Both patient PREM's demonstrated a good fit to the Rasch model following Bonferroni correction (X2p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model ( X2p = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings. CONCLUSIONS: The three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients' and their carers' experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement.

Understanding the impact of distance and disadvantage on lung cancer care and outcomes: a study protocol.

BACKGROUND: Lung cancer is the third most common cancer in the UK and the leading cause of cancer mortality globally. NHS England guidance for optimum lung cancer care recommends management and treatment by a specialist team, with experts concentrated in one place, providing access to specialised diagnostic and treatment facilities. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, together with workforce limitations, make achieving this challenging. This place-based, behavioural science-informed qualitative study aims to explore how person-related characteristics interact with a person's location relative to specialist services to impact their engagement with the optimal lung pathway, and to compare and contrast experiences in rural, coastal, and urban communities. This study also aims to generate translatable evidence to inform the evidence-based design of a patient engagement intervention to improve lung cancer patients' and informal carers' participation in and experience of the lung cancer care pathway. METHODS: A qualitative cross-sectional interview study with people diagnosed with lung cancer < 6 months before recruitment (in receipt of surgery, radical radiotherapy, or living with advanced disease) and their informal carers. Participants will be recruited purposively from Barts Health NHS Trust and United Lincolnshire Hospitals NHS Trusts to ensure a diverse sample across urban and rural settings. Semi-structured interviews will explore factors affecting individuals' capability, opportunity, and motivation to engage with their recommended diagnostic and treatment pathway. A framework approach, informed by the COM-B model, will be used to thematically analyse facilitators and barriers to patient engagement. DISCUSSION: The study aligns with the current policy priority to ensure that people with cancer, no matter where they live, can access the best quality treatments and care. The evidence generated will be used to ensure that lung cancer services are developed to meet the needs of rural, coastal, and urban communities. The findings will inform the development of an intervention to support patient engagement with their recommended lung cancer pathway. PROTOCOL REGISTRATION: The study received NHS Research Ethics Committee (Ref: 23/SC/0255) and NHS Health Research Authority (IRAS ID 328531) approval on 04/08/2023. The study was prospectively registered on Open Science Framework (16/10/2023; https://osf.io/njq48 ).

Patients' Experience to MRI Examinations-A Systematic Qualitative Review With Meta-Synthesis.

BACKGROUND: Patients often mention distress, anxiety, or claustrophobia related to MRI, resulting in no-shows, disturbances of the workflow, and lasting psychological effects. Patients' experience varies and is moderated by socio-demographic aspects alongside the clinical condition. While qualitative studies help understand individuals' experiences, to date a systematic review and aggregation of MRI individuals' experience is lacking. PURPOSE: To investigate how adult patients experience MRI, and the characterizing factors. STUDY TYPE: Systematic review with meta-aggregation and meta-synthesis. POPULATION: 220 patients' reported experience of adults undergoing clinical MRI and 144 quotes from eight qualitative studies. ASSESSMENT: Systematic search in PubMed, Scopus, Web of Science, and PsycInfo databases according to the PRISMA guidelines. For quality appraisal, the Joanna Briggs Institute (JBI) tools were used. Convergent segregated approach was undertaken. DATA ANALYSIS: Participant recruitment, setting of exploration, type of interview, and analysis extracted through Joana Briggs Qualitative Assessment and Review Instrument (JBI QARI) tool. Meta-synthesis was supported by a concept map. For meta-aggregation, direct patient quotes were extracted, findings grouped, themes and characterizing factors at each stage abstracted, and categories coded in two cycles. Frequency of statements was quantified. Interviews' raw data unavailability impeded computer-aided analysis. RESULTS: Eight articles out of 12,755 initial studies, 220 patients, were included. Meta-aggregation of 144 patient quotes answered: (1) experiences before, at the scanning table, during, and after an MRI, (2) differences based on clinical condition, and (3) characterizing factors, including coping strategies, look-and-feel of medical technology, interaction with professionals, and information. Seven publications lack participants' health literacy level, occupation, and eight studies lack developmental conditions, ethnicity, or country of origin. Six studies were conducted in university hospitals. DATA CONCLUSION: Aggregation of patients' quotes provide a foundational description of adult patients' MRI experience across the stages of an MRI process. Insufficient raw data of individual quotes and limited socio-demographic diversity may constrain the understanding of individual experience and characterizing factors. LEVEL OF EVIDENCE: 1 TECHNICAL EFFICACY: Stage 5.

Sustaining the benefits of structured education: Participants' experiences of receiving structured individual support during a programme (DAFNEplus) informed by behavioural science.

AIMS: The DAFNEplus programme seeks to promote sustained improvements in glycaemic management by incorporating techniques from behavioural science. It includes five sessions of structured individual support delivered over 12 months following group education. As part of a broader evaluation, and to inform decision-making about roll-out in routine care, we explored participants' experiences of, and engagement with, that individual support. METHODS: We interviewed DAFNEplus participants (n = 28) about their experiences of receiving individual support and the impact they perceived it as having on their self management practices. We analysed data thematically. RESULTS: Participants described several important ways individual support had helped strengthen their self management, including: consolidating and expanding their understandings of flexible intensive insulin therapy; promoting ongoing review and refinement of behaviour; encouraging continued and effective use of data; and facilitating access to help from healthcare professionals to pre-empt or resolve emergent difficulties. Participants characterised themselves as moving towards independence in self management over the time they received individual support, with their accounts suggesting three key stages in that journey: 'Working with healthcare professionals'; 'Growing sense of responsibility'; and, 'Taking control'. Whilst all portrayed themselves as changed, participants' progress through those stages varied; a few continued to depend heavily on DAFNEplus facilitators for advice and/or direction at 12 months. CONCLUSIONS: While all participants benefited from individual support, our findings suggest that some may need, or gain further benefit from, longer-term, tailored support. This has important implications for decision-making about roll-out of DAFNEplus post-trial and for the development of future programmes seeking to bring about sustainable changes in self management practices.

A qualitative evaluation of patient and parent experiences with an undiagnosed diseases program.

Previous studies have explored patient experiences before being seen or at the beginning of their evaluation by undiagnosed diseases programs. This study provides additional insight into experiences after participation through in-depth, qualitative evaluation, allowing for reflection of current practice and patient/parent needs. Semi-structured interviews were conducted with patients and parents of patients seen at the University of Alabama at Birmingham (UAB)'s unique, clinically focused Undiagnosed Diseases Program (UDP). Analysis of the interviews was guided by a thematic approach. Participants had undergone a diagnostic odyssey before being evaluated by the UDP and remained hopeful for a diagnosis. They appreciated the opportunity to be seen by the UDP. However, perception of experiences differed based on whether evaluation by the UDP led to a diagnosis. Additionally, while participants were pleased with initial communication, they indicated that there were unmet needs regarding follow-up. Patients and parents of patients believe that participation in an undiagnosed diseases program is the best option for diagnosis. The findings of this study provide a general overview of patient experiences and highlight strengths of the UAB UDP while also emphasizing areas to focus the improvement to optimize the benefit to patients and families with undiagnosed and rare diseases, which could be used helpful in the development of similar clinics.

Anifrolumab treatment improves patient-reported quality of life and decreases disease activity and corticosteroid use in patients with systemic lupus erythematosus: A qualitative study in Denmark.

Anifrolumab is a new therapeutic approach for individuals with systemic lupus erythematosus (SLE) directed at blocking the type 1 interferon pathway. Despite the expanding body of literature on Anifrolumab, an essential aspect remains absent: the subjective patient experience of treatment effects and implications on patients' health-related quality of life (HRQoL). The present study aimed to fill this void by elucidating the nuanced perspectives of SLE patients receiving Anifrolumab treatment by conducting qualitative in-depth interviews (IDIs). SLE patients at Aarhus University Hospital who had received at least three infusions of Anifrolumab were approached for inclusion in the study, which comprised two main elements: (1) qualitative IDIs and (2) collection of patient data from electronic medical records (EMRs). The IDIs were semi-structured and based on a discussion guide that included open-ended and close-ended questions. Verbatim transcripts were coded and analysed using qualitative software to understand concepts important to patients and to understand patients' own experiences before and after Anifrolumab therapy. A clinical chart review was conducted using EMR data at baseline, 3 months, and 6 months after Anifrolumab initiation. IDIs were completed with 14 patients, and EMR data was collected from 16 patients (treatment days range: 62-474). Of the 23 symptoms spontaneously reported by patients prior to Anifrolumab treatment, fatigue, joint pain, sun sensitivity, joint stiffness, skin rashes, and hair loss were the most common. Most symptoms improved, and none worsened during treatment. Patients reported significant impacts of disease on daily life before treatment: day-to-day activities, social life, emotional aspects, physical activity, concentration/memory, work/employment, and family/romantic relationships. Patients reported improvements in all aspects after treatment but were still impacted. From the EMR data, we observed a fall in disease activity after treatment initiation with a concomitant reduction in the use of corticosteroids. This study provides valuable insights into the subjective experiences of SLE patients treated with Anifrolumab, and the findings collectively contribute to a comprehensive understanding of the treatment's efficacy from the patients' perspective and its tangible effects on both subjective and objective parameters in SLE patients.

Measuring Healthcare Experiences Among People With Intellectual Disability: A Rapid Evidence Synthesis of Tools And Methods.

OBJECTIVES: Patient-reported experience measures (PREMs) collect essential data for service and system-wide quality improvement and performance monitoring toward value-based care. However, the experiences of people with intellectual disability, who have high healthcare utilization couple with poorer outcomes, are often omitted from system-wide PREMs and service-wide PREMs data. The use of PREMs instruments for data collection among people with intellectual disability has not been explored. This review aimed to identify and synthesize measurement tools and approaches that have been used to gather patient-reported experience data from people with intellectual disability. METHODS: Rapid evidence assessment was used, in which comprehensive search strategies were applied to electronic databases and gray literature. Narrative synthesis was used with the included articles to address the review aim. RESULTS: A total of 48 documents were included; 26 peer-reviewed journal articles and 22 articles from gray literature. Patient-reported experiences have been gathered from people with intellectual disabilities in relation to specific services or encounters, predominantly using qualitative methods. To date, there is an absence of targeted service- or system-wide surveys. Existing clinic- and condition-specific instruments provide insight for broader application. CONCLUSIONS: Patient experience assessment among people with intellectual disability requires consideration of (1) how individuals are identified and approached, (2) the content, design and structure of measurement instruments, and (3) the process by which data are collected, and (4) how it may be applied to create change. Despite the collection of patient experience data from people with intellectual disability, there is little research available about how this information is later used to support health service improvement. Applying PREMs for quality improvement is critical to realize the improvements to healthcare provision required for people with intellectual disability toward equitable care quality.

Patient-Informed Value Elements in Cost-Effectiveness Analyses of Major Depressive Disorder Treatment: A Literature Review and Synthesis.

OBJECTIVES: Prior work identified 6 key value elements (attributes of treatment and desired outcomes) for individuals living with major depressive disorder (MDD) in managing their condition: mode of treatment, time to treatment helpfulness, MDD relief, quality of work, interaction with others, and affordability. The objective of our study was to identify whether previous cost-effectiveness analyses (CEAs) for MDD treatment addressed any of these value elements. A secondary objective was to identify whether any study engaged patients, family members, and caregivers in the model development process. METHODS: We conducted a systematic literature review to identify published model-based CEAs. We compared the elements of the published studies with the MDD patient value elements elicited in prior work to identify gaps and areas for future research. RESULTS: Of 86 published CEAs, we found that 7 included patient out-of-pocket costs, and 32 included measures of productivity, which were both priorities for individuals with MDD. We found that only 2 studies elicited measures from patients for their model, and 2 studies engaged patients in the modeling process. CONCLUSIONS: Published CEA models for MDD treatment do not regularly include value elements that are a priority for this patient population nor do they include patients in their modeling process. Flexible models that can accommodate elements consistent with patient experience are needed, and a multistakeholder engagement approach would help accomplish this.

Telemedicine Abortion in Primary Care: An Exploration of Patient Experiences.

PURPOSE: The purpose of the study was to explore patients' experiences and perspectives obtaining telemedicine medication abortion (TeleMAB) through their primary care health system. METHODS: We conducted in-depth telephone interviews with 14 English-, Spanish-, and/or Portuguese-speaking patients who received a TeleMAB between July 2020 and December 2021, within a large primary care safety-net community health system in Massachusetts. We created and piloted a semistructured interview guide informed by patient-clinician communication frameworks and prior studies on patient experiences with TeleMAB. We analyzed data using reflexive thematic analysis and summarized main themes. RESULTS: Overall, participants found TeleMAB services in their primary care health system acceptable, positive, and easy. Participants discussed how TeleMAB supported their ability to exercise control, autonomy, and flexibility, and decreased barriers experienced with in-clinic care. Many participants perceived their primary care health system as the place to go for any pregnancy-related health care need, including abortion. They valued receiving abortion care from their established health care team within the context of ongoing social and medical concerns. CONCLUSIONS: Patients find TeleMAB from their primary care health system acceptable and beneficial. Primary care settings can integrate TeleMAB services to decrease care silos, normalize abortion as a part of comprehensive primary care, and improve access through remote care offerings. TeleMAB supports patients' access and autonomy, with the potential to benefit many people of reproductive age.

Exploring perceptions of inpatient hospital attire in children with cancer.

BACKGROUND: Attire bolsters identity, self-expression, and comfort. Hospital gowns are known to be distressing in adults. Attitudes of children with cancer toward hospital attire remain uninvestigated and may be a modifiable factor in overall well-being. METHODS: A 39-item mixed methods survey evaluated perceptions of patient attire in children with cancer. Children aged 7-18 years were recruited at an academic medical center. Data analysis included simple statistics and thematic analysis. RESULTS: Forty children with cancer receiving oncologic care participated. Participants' mean age was 12.4 (SD = 3.0, range = 7-17) years, and 25 (62%) were male. Quantitative data revealed 81% of participants preferred their own attire when admitted to the hospital, feeling more comfortable in such when well (91%) or sick (75%). They did not feel like they "must" wear a gown when admitted (60%) and did not want to be asked about preferred inpatient attire (63%). Thematic analysis revealed that children had strong negative views of gowns and preferred to wear their own attire in the hospital, which provided physical and emotional comfort. Children worried wearing their own clothing could impede their care. CONCLUSION: Children with cancer prefer wearing their own clothes in the hospital for physical and emotional comfort. They are willing to wear gowns for ease of care; however, they do not want to arbitrate when they need to make that choice. Providers may ease distress by considering a child's own clothes as default hospital attire with instructions for when a gown is necessary for good clinical care.

The experiences of individuals living with HIV in Ireland attending out-patient physiotherapy.

People living with HIV (PLWH) are living longer and are becoming increasingly susceptible to multi-morbidity resulting in disability. Physiotherapy is an important component in the care of PLWH, increasing functional capacity and quality of life. However, few PLWH access physiotherapy services due to a lack of specialised services, relapses in medical conditions and financial barriers. This study aimed to gather feedback from PLWH in a tertiary infection centre in Ireland attending out-patient physiotherapy on their experiences of physiotherapy. Eleven PLWH completed a semi-structured feedback survey focusing on their expectations and experiences of physiotherapy. Participants reported an overall positive experience of physiotherapy especially in terms of improving movement, confidence, physical activity level and sense of control. In addition, participants highlighted the importance of a physiotherapist with specialist knowledge of HIV. Barriers to participation in physiotherapy included potential relapses in other medical conditions, lack of time due to work and lack of flexibility or availability of physiotherapy appointments. This study highlights the important role of physiotherapy in the care of PLWH, several potential barriers to participation in physiotherapy for PLWH and the importance of the participation of PLWH in the co-design of services.