Patient Experience Research Articles

Cardiovascular complications associated with asciminib use: A retrospective analysis.

6563 Background: Asciminib, a newly developed drug, has shown promising results in the treatment of several diseases. It is a cellular tyrosine kinase inhibitor (TKI) that specifically targets ABL myristoyl pocket (STAMP) inhibitor, responsible for the malignant growth and proliferation of leukemia cells in chronic myeloid leukemia (CML) patients, assuring a positive treatment of CML. However, as with all medications, there are possible side effects that must be carefully monitored. In comparison to Ponatinib (tyrosine kinase inhibitor) which is extensively used to treat CML and exhibits a cardiovascular risk profile, cardiovascular side effects with the use of Asciminib are rarely reported in literature, prompting its use in patients at a higher risk of these events. Through this study, we aim to highlight the cardiovascular complications associated with the use of Asciminib by integrating patient experience and clinical research. Methods: A publicly available FDA Adverse Events Reporting System (FAERS) database was utilized to review cardiovascular events associated with the use of Asciminib in patients with Chronic Myeloid leukemia (CML) between 2018-2023. Cardiovascular events such as coronary artery disease (CAD), peripheral arterial disease (PAD), and cerebrovascular accidents (CVA) were reviewed. The study focused only on adverse events reported by healthcare providers and observed in adults (above 18 years old). Results: We identified a total of 563 adverse events pertaining to the use of Asciminib in patients with CML. Of which, 63 were cardiovascular events, contributing to 11.2% of the total adverse events. Out of the reported cardiovascular side effects, 29 (46%) were due to CAD, 6 (9.5%) were due to PAD, and 28 (44.45%) were due to CVA. The mortality rate amongst patients who experienced cardiovascular side effects was 11%. Moreover, cardiovascular events contributed to 7% of all mortality associated with the use of Asciminib, with CAD contributing to most of the deaths. Conclusions: It is imperative to consider the potential of cardiovascular events in patients initiated on Asciminib. This study emphasizes the importance of using patient records and medical research to obtain complete information. Patients with underlying risk factors for the development of cardiovascular diseases should be thoroughly evaluated before drug initiation. The minimum threshold for drug discontinuation should be considered in patients with suspected heart disease.

Socioeconomic inequities in care experienced by women with breast cancer in England: An intersectional cross-sectional study.

PurposeGuided by the Intersectionality Framework, we examined the differential in breast cancer care experience across population subgroups in England. MethodsSecondary data analysis using the 2017/2018 National Cancer Patient Experience Surveys. We used disaggregated descriptive statistics (mean, standard errors, 95% confidence interval) to analyse 26,030 responses from female breast cancer patients to a question relating to overall care experience categorised by age, ethnicity, and sexual orientation in their intersection with social position. We then used logistic regression to investigate the odds (Odds Ratio (OR), 95% confidence intervals) of reporting positive care experience adjusting for patient, clinical, and Trust level factors. ResultsPoorer care experience was predominantly reported by the most deprived younger and minoritised ethnic groups. Statistically significant findings were observed in adjusted multivariable analyses. Compared to patients aged 64-74 years, younger respondents were less likely to rate their care favourably (16-34 years old ORadj.=0.55 (0.36-0.84). Compared to White British, Asian (ORadj.=0.51 (0.39-0.66)) and Black African women (ORadj.=0.53 (0.33-0.88)) were less likely to rate their care favourably. The least affluent respondents were less likely to rate their care favourably (ORadj.=0.79 (0.64-0.97)). ConclusionThere is evidence of inequity in overall cancer care experience among female breast cancer patients in England, particularly among women living at the specific intersection of age, ethnicity, and socioeconomic position. Future research is necessary to understand the mechanisms underlying breast cancer inequities. Policymakers, commissioners, and providers should consider the existence of multiple forms of marginalisation to inform improvement initiatives targeting patients at higher risk of vulnerability.

Rethinking the Abnormal Uterine Bleeding Consult: Creating a Patient-Centered, See-and-Treat Model of Care

Historically, the evaluation of abnormal uterine bleeding (AUB) has involved a multi-visit process that uses a multitude of care settings (eg, in-office, imaging, laboratory), with the potential for lengthy delays in care due to the now-commonplace scheduling difficulties many clinics face. Although there is strong evidence for the use of in-office uterine assessment as a best practice, uptake has been limited by the learning curve, technology acquisition costs, and other factors. However, due to the coronavirus disease 2019 (COVID-19) pandemic, clinical practice has faced rapid adaptations that have resulted in the redesigned clinical care model of evaluating this common gynecologic condition in a more patient-centered and streamlined way while maximizing the patient experience, health care efficiency, and physician engagement. This procedure would specifically involve one telehealth or initial visit to assess patient history, perform necessary laboratory testing, review results, and plan outpatient procedures to be conducted in the office or the operating room. Due to the COVID-19 pandemic, clinics have, by necessity, implemented this proposed reimagined pathway in a variety of outpatient settings nationally. We propose that, moving forward, this new procedure be permanently adopted in clinics nationwide as the patient-focused evaluation strategy for AUB.

With eyes on the future: Prospective evaluation of immune-related adverse events in patients with lung cancer.

e23177 Background: Immune checkpoint inhibitors (ICIs) bear unique, time-dependent immune-related adverse events (irAEs). However, limited data exist regarding tolerability in real-world populations. We report interim, non-sex stratified results of the first study prospectively evaluating ICI tolerability in patients with lung cancer (LC) in a real-world setting. Methods: Recruitment began in July 2023 and is ongoing. The electronic Patient-Reported Outcomes version of the Common Terminology Criteria (PRO-CTCAE) was utilized to assess patients’ irAEs. Patients (pts) complete up to 6 questionnaires throughout their treatment plus an end of treatment evaluation. Inclusion criteria includes pts ≥18 years, with LC stage I to IV, receiving single-agent ICI at Dana-Farber Cancer Institute. Descriptive statistics summarized patients' demographics, clinical characteristics, and symptoms. Results: 36 pts were enrolled in the study as of January 23, 2024. 35 pts have completed their first PRO-CTCAE questionnaire; the median number of completed questionnaires was 2 (range: 1-6). Due to the current sample size, results reported reference pts’ first PRO-CTCAE assessment. 53% of pts identified as female, 92% identified as White, and 6% as Black (Table 1). 56% of pts (19/34) reported having shortness of breath (SOB), most of whom (63%; 12/19) reported having moderate to severe SOB that often (somewhat to very much; 42%; 8/19) interfered with daily activities; 21% of them (4/19) stated that the SOB had worsened since starting ICIs. Similarly, of the 54% (19/35) with a cough, 42% (8/19) reported a moderate to very severe cough and 16% (3/19) reported its worsening since ICI initiation. 14 pts reported anorexia secondary to treatment, with most of them (57%; 8/14) reporting that it interfered with daily activities. Most pts (79%; 27/34) noted some degree of lack of energy. Rates of skin toxicity were low, with only 6% (2/35) experiencing a rash after beginning ICIs. Many pts did not experience nausea, abdominal pain, or unexpected sweating (80%; 28/35, 83%; 29/35, 77%; 27/35). However, of the pts reporting nausea and abdominal pain, high severity of these symptoms was noted (43%; 3/7, 50%; 3/6). Other low frequency irAEs included diarrhea, dry mouth, and dysgeusia. Conclusions: SOB and cough were the most common symptoms experienced with high severity in this ongoing prospective evaluation of irAEs in pts with LC. Though nausea and abdominal pain were less common, when present, these symptoms were reported with high severity. Future data from this study will elucidate patient experiences with irAEs throughout their treatment course. [Table: see text]

The lymphedema patient experience within the healthcare system: a cross-sectional epidemiologic assessment

Lymphedema is a progressive lymphatic disease that potentiates physical and psychosocial distress. Despite its impact, patients reportedly encounter lymphatic ignorance throughout the healthcare system. This cross-sectional study aims to summarize clinical characteristics and interactions of lymphedema patients within the healthcare system. Two lymphedema patient cohorts were included: The Global Registry Analysis Cohort included lymphedema patients who contributed to an international digital lymphatic registry and the Interactions Cohort included patients who initiated a questionnaire about interactions with the medical system. The global registry was used to obtain demographic and clinical characteristics from affiliated lymphedema patients. A 23-item online questionnaire on healthcare experiences and satisfaction with lymphatic healthcare was then distributed to the Interactions Cohort. Complete responses were obtained from 2474 participants. Participants were a mean age of 57.5 ± 16.1 years and 51.4% had a cancer history. Participants reported substantial delays in diagnosis and treatment. Cancer-related and non-cancer-related lymphedema patients reported similar levels of perceived physician disinterest in their lymphedema; however, non-cancer-related lymphedema patients reported more care dissatisfaction. Ultimately, patients continue to face delays in lymphedema diagnosis and treatment. We developed an evidence-based model highlighting areas of reform needed to improve lymphatic education and healthcare.

Evolution of germline BRCA1/2 testing practices: A five-year comparative analysis among oncology providers and patients.

e13172 Background: The Association of Cancer Care Centers (ACCC) launched a quality improvement initiative in 2018 to address suboptimal germline BRCA1/2 testing rates and identify barriers impeding testing for patients with early-stage or metastatic breast cancer. Between 2018 and 2023, changes in clinical guidelines led to expanded testing criteria and increased referrals for genetic testing. A follow-up survey in 2023 aimed to assess changes in testing practices and challenges faced by cancer care teams, considering the evolving landscape of genetic testing and the impact of the COVID-19 pandemic. Methods: In 2018, a survey of 95 oncology providers was conducted to explore provider characteristics, testing characteristics, and challenges/barriers to germline BRCA 1/2 testing. The survey was conducted again in 2023 for comparative analysis with a response of 115 oncology providers. The surveys explored provider characteristics, testing practices, and challenges/barriers to germline BRCA1/2 testing. To comprehensively understand the patient's perspective, an additional survey was conducted in October 2023, involving 61 individuals recently diagnosed with breast cancer to evaluate the patient experience with germline BRCA 1/2 testing and subsequent follow-up. Results: The adoption of expanded testing criteria, which influenced changes in clinical guidelines, has led to a substantial increase in referrals for genetic testing. The utilization of genetic testing by medical oncologists experienced a notable surge with 64% of survey respondents in 2023 reporting that medical oncologists most often initiated tests for germline BRCA1/2 mutations, compared to 29% in 2018. Patients’ awareness and engagement were high, with 82% undergoing germline BRCA1/2 testing, 48% undergoing testing at diagnosis, 33% before treatment, and 13% during treatment. In 2023, 23% of providers reported routinely ordering germline BRCA1/2 testing for patients with early-stage breast cancer, marking a threefold increase from the 2018 survey results. For patients with metastatic breast cancer, 41% of providers routinely ordered BRCA mutation testing, a threefold increase from 14% in 2018. While testing rates improved, challenges and barriers persist such as patient concerns (47%), access to genetic counselors (42%), turnaround time for test results (36%), and reimbursement issues (28%). Conclusions: The comparative analysis revealed a moderate improvement in germline BRCA1/2 testing practices, with increased provider engagement and patient awareness. Despite progress, challenges persist, needing multi-pronged efforts to enhance testing uptake and distribute critical information on testing to patients. The results indicate positive trends but underscore the importance of addressing barriers for comprehensive patient care.

Open-label, phase 2 study of adebrelimab combined with fuzuloparib in the treatment of patients with HRD-positive, recurrent platinum-resistant ovarian cancer.

TPS5634 Background: Adebrelimab, a humanized anti-PD-L1 monoclonal antibody, selectively targets PD-L1 molecules to inhibit the PD-1/PD-L1 pathway, reversing tumor-induced immune tolerance and revitalizing the immune system's capacity to combat tumors. Fuzuloparib, a novel PARP inhibitor, impedes the activity of poly (ADP-ribose) polymerase, halting the DNA repair mechanism for single-stranded breaks, resulting in DNA damage accumulation and consequent cancer cell apoptosis. Emerging evidence strongly supports that PARP inhibitors significantly extend progression-free survival in homologous recombination-deficient (HRD)-positive ovarian cancer. The TOPACIO study demonstrated that the combination of niraparib and pembrolizumab for platinum-resistant ovarian cancer achieved an objective response rate (ORR) of 18%, with durable responses in patients. This underscores the potential of integrating PARP inhibitors with immune checkpoint inhibitors in clinical protocols. For platinum-resistant recurrent ovarian cancer, known for its challenging prognosis, we propose conducting exploratory clinical trials on the combination of adebrelimab and fuzuloparib, aiming to establish robust evidence for future clinical applications. Methods: This open-label, single-arm, Phase 2 study aims to evaluate the anti-tumor activity and safety of adebrelimab in combination with fuzuloparib in approximately 37 patients with HRD-positive, recurrent platinum-resistant epithelial ovarian cancer, fallopian tube cancer or primary peritoneal cancer (hereinafter referred to as ovarian cancer). The primary endpoint is to determine the objective response rate of the combined treatment regimen, as defined by the Response Evaluation Criteria in Solid Tumors version 1.1. Secondary endpoints encompass disease control rate, progression-free survival overall survival, along with the assessment of safety and tolerability. Patients must be aged 18-70 years with an Eastern Cooperative Oncology Group performance status of 0–1 and have recurrent histologically confirmed ovarian cancer with HRD-positive tumor. Patients must have progressed within less than 6 months after the last treatment with platinum-containing chemotherapy. HRD status confirmed by testing BRCA gene, loss of heterozygosity, telomeric allelic imbalance and large-scale transition. Adebrelimab (20 mg/kg) is administered intravenously every 3 weeks and fuzuloparib (100mg) is administered orally twice daily as until the patient experiences disease progression, intolerable toxicity, or other study treatment discontinuation criteria are met. This clinical trial is in progress and 7 patients have been enrolled. Clinical trial information: NCT05753826 .

ZEBRA study: The Z stitch Early Bed Rest Assessment study

BackgroundSafe and effective management of venous vascular access is a key component of EP procedures. Recently, the “Z stitch” method has been developed for effective venous hemostasis. However, the standard post-procedure protocol often includes prolonged bed rest, which may affect patient satisfaction. The ZEBRA study aims to systematically investigate and quantify patient satisfaction metrics and safety parameters associated with the early mobilization after “Z stitch” placement. ObjectiveThis study primarily investigates whether early mobilization following Z stitch placement in venous vascular access management during Electrophysiology (EP) procedures enhances patient satisfaction without compromising safety. MethodsIn this prospective, multicenter, randomized clinical trial, approximately 200 patients undergoing various EP procedures at OHSU and VAPORHCS will be randomly assigned to either a 1-hour or a 4-hour bed rest regimen post-Z stitch. Patient satisfaction will be assessed through survey, alongside monitoring for hematomas, bleeding complications, and other safety endpoints. The trial includes stratification based on heparin administration and sheath size to ensure robust and nuanced data analysis. ResultsWe anticipate that early mobilization will lead to higher patient satisfaction scores. We also expect to closely monitor and report the incidence of hematomas, pain medication use, healthcare costs, patient outcomes at 30 days, time to ambulation, and hospital readmissions or emergency visits related to groin complications. ConclusionThe ZEBRA study is poised to fill a critical knowledge gap in post-procedure care in EP labs. By rigorously evaluating the impact of early mobilization on patient satisfaction and safety, this study could significantly influence future guidelines and improve patient experiences in EP procedures.

Racial and Ethnic Differences in Health Care Experiences for Veterans Receiving VA Community Care from 2016 to 2021.

Prior research documented racial and ethnic disparities in health care experiences within the Veterans Health Administration (VA). Little is known about such differences in VA-funded community care programs, through which a growing number of Veterans receive health care. Community care is available to Veterans when care is not available through the VA, nearby, or in a timely manner. To examine differences in Veterans' experiences with VA-funded community care by race and ethnicity and assess changes in these experiences from 2016 to 2021. Observational analyses of Veterans' ratings of community care experiences by self-reported race and ethnicity. We used linear and logistic regressions to estimate racial and ethnic differences in community care experiences, sequentially adjusting for demographic, health, insurance, and socioeconomic factors. Respondents to the 2016-2021 VA Survey of Healthcare Experiences of Patients-Community Care Survey. Care ratings in nine domains. The sample of 231,869 respondents included 24,306 Black Veterans (mean [SD] age 56.5 [12.9] years, 77.5% male) and 16,490 Hispanic Veterans (mean [SD] age 54.6 [15.9] years, 85.3% male). In adjusted analyses pooled across study years, Black and Hispanic Veterans reported significantly lower ratings than their White and non-Hispanic counterparts in five of nine domains (overall rating of community providers, scheduling a recent appointment, provider communication, non-appointment access, and billing), with adjusted differences ranging from - 0.04 to - 0.13 standard deviations (SDs) of domain scores. Black and Hispanic Veterans reported higher ratings with eligibility determination and scheduling initial appointments than their White and non-Hispanic counterparts, and Black Veterans reported higher ratings of care coordination, with adjusted differences of 0.05 to 0.21 SDs. Care ratings improved from 2016 to 2021, but differences between racial and ethnic groups persisted. This study identified small but persistent racial and ethnic differences in Veterans' experiences with VA-funded community care, with Black and Hispanic Veterans reporting lower ratings in five domains and, respectively, higher ratings in three and two domains. Interventions to improve Black and Hispanic Veterans' patient experience could advance equity in VA community care.

Follow-up of patients with urinary tract infections discharged from the emergency department: a mixed methods study.

To evaluate the quality of culture follow-up after emergency department (ED) discharge in patients with urinary tract infections (UTIs). This convergent mixed methods study included an observational cohort study and a qualitative interview study in UTI patients discharged from the ED of a Dutch university hospital. The primary outcomes of the observational study were the proportion of patients requiring adjustment of antibiotic therapy after culture review, and the proportion of patients in whom these adjustments were made. Logistic regression identified factors associated with these outcomes. Interviews assessed patient experiences and transcripts were analysed using inductive thematic content analysis. Integration of the results informed recommendations for high-quality follow-up. Out of 455 patients, 285 (63%) required culture-based treatment adjustments. In most patients, no adjustments were made (239/285, 84%). De-escalation was most frequently omitted (98%), followed by discontinuation of antibiotics (92%). A mean of 7.1 (SD 3.8) antibiotic days per patient could have been avoided in 103 patients. Patients with diabetes were less likely to require adjustments (aOR 0.50, 95%-CI 0.29-0.85). Patients with moderate or severe renal impairment (aOR 4.1, 95%-CI 1.45-11.33; aOR 4.2, 95%-CI 1.50-11.94) or recurrent UTIs (aOR 5.0, 95%-CI 2.27-11.18) were more likely to have received necessary adjustments. Twelve interviews also revealed varying degrees of follow-up. Three themes were identified: 'information and communication', 'coordination and accessibility of care' and 'individual needs and preferences'. Recommendations for high-quality follow-up advocate a person centred approach. This study highlights the importance of urine culture follow-up after ED discharge, mainly to reduce unnecessary antibiotic treatment, promote de-escalation and improve patient experience.

Digitalization in the Emergency Department-An Interview Study of Nurses' Experiences in Norway.

Emergency departments (EDs) are overcrowded and linked to an increased risk of mortality and morbidity. Digitalization in EDs has been shown to increase effectiveness, reduce wait times, and improve performance and patient experience. The purpose of this study was to explore ED nurses' experiences with digitalization in the ED. Interviews were conducted with eight ED nurses in a Norwegian hospital. Data were analyzed using Braun and Clarke's six-step thematic analysis. Through analysis, three themes were identified, namely (1) consequences for patient safety, (2) influencing communication in the ED, and (3) impacting acute nursing. ED nurses experienced that the digital tools had increased patient safety through accurate documentation and providing a quick overview of the patient. However, digital tools were also seen as a threat to patient safety due to taking focus away from the patient. Digital tools were experienced to have negatively changed the communication both between personnel and between personnel and patients. Also, digital tools impacted the ED nurses' professional role to a more digitalization-focused approach rather than a patient-oriented approach. These aspects must be included when planning the implementation of new digital tools in EDs in the future.

Policy and laboratory practice: How quality control procedures for genetic testing perpetuate biological essentialism and discrimination against transgender, gender diverse, and intersex people.

Transgender, gender diverse, and intersex (TGDI) individuals face significant health disparities due to individual and systemic experiences of discrimination, impacting their access to healthcare. While clinical genetic testing has become increasingly accessible to the general population, the field of clinical genetics perpetuates a narrative of biological essentialism, which creates barriers for TGDI patients. Biological essentialism upholds that sex is a binary, fixed, and innate characteristic, a misconception that has been historically weaponized against the TGDI community in both individual experiences of discrimination and anti-trans legislation, among other systemic forms of oppression. Rejecting this discriminatory framework requires careful consideration of, and changes to, long-established practices that often go unquestioned, such as quality control metrics in genetic testing, in order to improve TGDI patients' outcomes and access to genetic services. The sex-check, comparing an individuals reported sex against their sex chromosomes, is an example of how laboratory genetics practices reinforce the narrative that sex is determined purely by chromosomal composition. Additionally, the sex-check "outs" TGDI people in clinical settings, creating a discriminatory and unsafe environment for these patients. Alternative quality control procedures and inclusive practices, such as clearer delineation of sex and gender on test requisition forms, are proposed to improve TGDI patient experiences. Genetic counselors and other clinical providers have a responsibility to address historical discrimination and advocate for changes to laboratory practice, so as to create affirming experiences for TGDI patients.

Hospital life experience of older patients hospitalized for a long time in long-term care hospitals without visitors: A phenomenological study

Hospital life experience of older patients hospitalized for a long time in long-term care hospitals without visitors: A phenomenological study

A computer-aid speech rehabilitation system with mirrored video generating.

Aphasia is a communication disorder that affects the ability to process and produce language, which severely impacting their lives. Computer-aid exercise rehabilitation has shown to be highly effective for these patients. In our study, we proposed a speech rehabilitation system with mirrored therapy. The study goal is to construct a effective rehabilitation software for aphasia patients. This system collects patients' facial photos for mirrored video generation and speech synthesis. The visual feedback provided by the mirror creates an engaging and motivating experience for patients. And the evaluation platform employs machine learning technologies for assessing speech similarity. The sophisticated task-oriented rehabilitation training with mirror therapy is also presented for experiments performing. The performance of three tasks reaches the average scores of 83.9% for vowel exercises, 74.3% for word exercies and 77.8% for sentence training in real time. The user-friendly application system allows patients to carry out daily training tasks instructed by the therapists or the prompt information of menu. Our work demonstrated a promising intelligent mirror software system for reading-based aphasia rehabilitation.

Patient interpretations of patient-reported outcome measures to assess bowel urgency: qualitative interviews in ulcerative colitis

ObjectivesBowel urgency is an impactful core symptom of ulcerative colitis (UC). Patient-reported outcome (PRO) questionnaires have been developed and used to assess the patient experience of this important symptom. The objective of this paper is to present evidence from qualitative research conducted to support the use and interpretation of select PRO questionnaires to assess bowel urgency related to the UC patient experience.MethodsQualitative interviews were conducted with ten adults with a clinician-confirmed diagnosis of moderately to severely active UC. Interviews aimed to document patient interpretation of modified recall periods for the Urgency Numeric Rating Scale (Urgency NRS), two global assessments (i.e., the Patient Global Impression of Severity [PGIS] and Patient Global Impression of Change [PGIC]), and four items (Items 11, 16, 23, and 26) of the Inflammatory Bowel Disease Questionnaire (IBDQ), and explore the patient perspective of meaningful change on these questionnaires.ResultsBoth modified Urgency NRS versions (with 7-day or 3-day recall period) were interpreted as intended by most patients (≥ 88.9%), and slightly more than half of patients (60.0%) reported that the 7-day recall period was more relevant to their bowel urgency experience. Patients reported thinking of bowel urgency (≥ 80.0%) or bowel urgency-related accidents (70.0% of patients) when interpreting the global assessments and IBDQ items. Most patients reported a 1- to 3-point change as the smallest meaningful improvement that would be meaningful on the Urgency NRS (similar to findings on other questionnaires).ConclusionAdults with UC can understand and respond to the Urgency NRS with modified recall periods (i.e., 7-day or 3-day), interpret the conceptual content of the PGIS, PGIC, and select IBDQ items to be inclusive of bowel urgency and bowel urgency-related accidents, and select answers representing meaningful improvements on the Urgency NRS, PGIS, PGIC, and IBDQ item response scales. These results further contribute patient-centered data to existing UC and bowel urgency research.

Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: A qualitative study.

Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. Four generated themes included: 1. 'Why haven't you read what's wrong with me?'; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having 'a say in matters': control and responsibility; 4. Enabling patient and carer control of their records: 'custodianship is key'. Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.

Longitudinal qualitative study on the psychological experiences of COVID-19 patients based on timing it right framework

Timing it right framework was used as a framework to explore the illness experiences of patients infected with COVID-19 and to analyze the patients' perceptions of the disease and their true inner feelings to provide a reference for the control of infectious diseases. This research adopted a phenomenological research approach to develop a longitudinal qualitative study. A purposive sampling method was used to select participants and 37 patients were recruited. Depending on the principle that participants should have maximum variation and sampling should cease when interviews content saturation is achieved, 16 COVID-19 patients in an isolation ward in Ningbo City, Zhejiang Province were finally included. Data were collected using semi-structured interviews, and the content of the interviews was analyzed by Colaizzi’s 7-step method. The themes of COVID-19 patients’ experiences at various phase were presented as follows: multiple emotions intertwined at the time of diagnosis (anxiety, stressful panic, facing the diagnosis calmly), multiple pressures during the hospitalization period (concerns about the disease, unable to adapt to the ward environment, worrying about future hardship), growth of positive illness experience during the isolation and observation period (sublimated outlook on life, affirmation of the government's anti-epidemic policy, more concerned about their own health), adjustment after returning to society (stigma, loss of previous living environment, problems caused by nucleic acid testing), and adaptation to social life (return to normal life, avoidance of illness experience, post-covid-19 syndrome). The illness experience of COVID-19 patients changed dynamically with time, but a sense of shame and uncertainty about recovery was present throughout the process. Interventions should be developed according to the needs of the patients at different times to inform subsequent optimization of care and management of infectious diseases.

From decision to reflection: understanding the experiences and unmet care needs of patients treated with immunotherapy for melanoma in the adjuvant or metastatic setting

BackgroundDespite increased use of immune checkpoint inhibitors (ICIs) in patients with advanced melanoma, little is known about patient experiences during this treatment. This study aimed to gain an in-depth understanding of experiences and unmet care needs of patients treated in the adjuvant or metastatic setting for advanced melanoma regarding their ICI treatment trajectory.MethodsInterviews and focus groups were conducted among 35 patients treated with ICIs in the adjuvant setting for completely resected stage III (n = 14), or in the metastatic setting for irresectable stage IV (n = 21) melanoma. A thorough thematic content analysis was conducted.Results Three main themes were identified. When (1) dealing with uncertainty in the decision-making process, adjuvant patients explored the pros and cons, whereas metastatic patients considered immunotherapy their only viable option. Both groups expressed the need for additional guidance. In (2) navigating the immunotherapy course, both perceived the trajectory as intense, experienced a major impact on their and their (close) relatives’ lives, and felt the need to (re)gain control. When (3) looking back on the immunotherapy experience, metastatic patients generally felt relieved, while among adjuvant patients, feelings of doubt regarding their choice for ICIs were also reported.ConclusionsICI treatment is perceived as intensive for both patient groups, facing both comparable and distinct challenges throughout the treatment trajectory, underscoring the need for stage-specific, individualised guidance. Options regarding flexible follow-ups, low-threshold contact and psychosocial support throughout the treatment trajectory should be explored.

Understanding Colorectal Cancer Patient Experiences with Family Practitioners in Canada.

Despite ongoing screening efforts, colorectal cancer (CRC) remains a leading cause of death in Canada. The aim of this study was to better understand the experiences of Canadian CRC patients with their family practitioners (FPs) during and after their CRC diagnosis. Patient-reported data were collected through an online questionnaire to understand their CRC diagnosis experiences and identify potential gaps in care. Various factors contributing to challenges throughout a patient's CRC diagnosis (e.g., delayed CRC diagnosis) were determined using descriptive, qualitative, and inferential analyses. These factors could be targeted to optimize CRC care. This study found that 40.6% of the 175 respondents were unaware of at least one of the following aspects of CRC prior to their diagnosis: early-age onset (EAO), symptoms, and screening procedures. While 84.6% had access to a family physician (FP) before their diagnosis, only 17.7% were diagnosed by FPs. Higher proportions of younger individuals experienced misdiagnoses and felt dismissed compared to older individuals. Only half felt fully informed about their diagnosis when it was explained to them by their FP, while 53.1% had their diagnosis explained in plain language. Transitioning towards patient-centred care would promote pre-diagnosis CRC awareness, address differences in management of CRC care (e.g., dismissal and support), and accommodate for age and health-literacy-related disparities, thereby improving CRC care pathways for patients. Future research should investigate FPs experiences in detecting CRC cases to develop educational resources and recommendations, enhancing early detection and improving patient outcomes (1).

Quality of Care during the COVID-19 Pandemic: A Qualitative Exploration of Bereaved Caregivers' Experiences at a Hospice Residence.

Background: An essential component of residential hospice care is the provision of high quality palliative care. The perspectives of quality of care from palliative care patients and bereaved caregivers have increasingly been studied to guide quality improvements. Aim: The study aimed to explore the experiences and perceptions of bereaved caregivers of patients who died in residential hospice during the coronavirus disease-19 (COVID-19) pandemic to determine perceptions of quality of care, caregiver grief and bereavement, and the impact of the COVID-19 pandemic. Design: Qualitative exploratory study using secure, web-based semistructured interviews. Data were analyzed using thematic analysis. Setting/Participants: A total of 15 bereaved caregiver participants were recruited from two residential hospice sites in Ottawa, Ontario. Results: Participants identified several factors that impacted the quality of care in residential hospice, including the impact of the COVID-19 pandemic itself. The findings are presented in three main themes: (1) quality of residential hospice end-of-life care; (2) caregiver perceptions of their grief and bereavement; and (3) impact of the COVID-19 pandemic on hospice quality of care and caregiver bereavement. Conclusions: The COVID-19 pandemic had a significant impact on the patient and caregivers experience of hospice, including perception of quality of care and caregiver experience of grief and bereavement.