Patient Experience Research Articles

Abstract B160: Assessing patient experience in cancer clinical trial participants: Results from a rapid umbrella review with an equity lens

Abstract Introduction: Clinical trials are an important part of cancer care, yet research assessing patient experience in cancer clinical trials is sparse. Ensuring that the patient voice is heard and valued in the context of clinical trials is critical to the delivery of high-quality, patient-centered, and equitable cancer care. Furthermore, understanding the aspects of cancer clinical trials that are important to and reported by patients may inform strategies to address barriers to clinical trial participation, improve diversity in clinical trials, and advance health equity, particularly among populations underrepresented in clinical research. This rapid umbrella review sought to understand how patient experience is assessed in cancer clinical trials and to identify opportunities to integrate an equity lens. Methods: PubMed, Embase, Cochrane, and CINAHL databases were searched for systematic reviews that identify and describe development, use, or testing of tools/instruments assessing patient experience of cancer clinical trial patients. The search strategy was collaboratively developed with an NIH Librarian, using a combination of key terms to describe: 1) patient experience, 2) clinical trials, 3) healthcare delivery, and ) systematic reviews. The search was limited to publications in the English language and a date range of 2018-2024. One co-author completed the title and abstract review based on the inclusion criteria. Two reviewers will then independently completed the full text review, quality appraisal, and data abstraction for all included studies. All authors will synthesize data into matrix tables and narratively summarize into key themes. Discrepancies were resolved through discussion. Results: Out of 1,751 yielded search results, 151 articles were preliminarily identified. Upon further reading of the full texts, the final list of included articles meeting inclusion criteria will be reported using Covidence. Summary findings from this rapid umbrella review will include the number of studies identified, clinical trials population, a description of the patient experience measures, domains, findings, as well as opportunities for health equity integration using the PROGRESS-Plus Framework. Conclusion: Equitable representation in clinical trials will require intentional efforts to understand and enhance the experience of patients on clinical trials across diverse patient populations, as well as address barriers to participation. However, there are several research gaps that limit our understanding in this area, including a lack of consistent definitions, patient experience domains; availability and use of standardized, validated measures for clinical trial populations, and knowledge about what factors differ and influence patients’ experiences, particularly among populations underrepresented in clinical research. Attention to these gaps will facilitate a greater understanding of patient needs, experiences, and barriers, and may promote actionable strategies to increase access to, inclusion of, and diversity in cancer clinical trials. Citation Format: Brenda Adjei, Katrina Makres, Eric Juarez, Sae-Jin E Lee, Lynne Padgett. Assessing patient experience in cancer clinical trial participants: Results from a rapid umbrella review with an equity lens [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B160.

Recounting the untold stories of breast cancer patient experiences: lessons learned from a patient–public involvement and engagement storytelling event

Recounting the untold stories of breast cancer patient experiences: lessons learned from a patient–public involvement and engagement storytelling event

Exploring the Role of Spirituality in Healing: A Case Study of Patients at Bekwai Municipal Hospital, Bekwai, Ghana

Spirituality and its relationship to health and healing has been a topic of interest across cultures and religious traditions. While spirituality is a broad concept, for many it involves a connection to a higher power or search for meaning and purpose. This study explored the role of spirituality in the healing process from the perspective of patients receiving care at Bekwai Municipal Hospital, Bekwai, Ghana. A mixed method approach was used, incorporating the administering of questionnaires and interviews with 58 patients from various religious and spiritual backgrounds, including Christianity, Islam, African Traditional Religion, and non-religious beliefs. The results showed high levels of spirituality among patients, with most engaging in spiritual or religious practices like prayer, meditation, and music to cope with illness. The study furthermore showed that the majority believed these practices positively contributed to their healing process. From the study, it was also established that while definitions of spirituality varied, common themes of inner peace, transcendence, and connection to a higher power emerged. Furthermore, it was noted that both religious and non-religious patients described drawing strength and meaning from their spiritual worldviews. Healthcare staff also acknowledged the importance of addressing patients’ spiritual needs. This study provides insights into how spirituality is a significant part of the healing experience for many patients in Ghana. By exploring diverse spiritual and religious perspectives, this study highlights opportunities for more holistic and culturally sensitive care that meets patients’ spiritual as well as medical needs. Further research could continue investigating the mechanisms through which spirituality may support health and well-being. Keywords: Religion, Spirituality, Patients, Healing

Color changes in the feet: a sign of autonomic symptoms in systemic sclerosis

Abstract Objectives Patients with autonomic dysfunction, or dysautonomia, often report discoloration of their dependent extremities, which is thought to be from venous pooling or acrocyanosis. A subset of patients with systemic sclerosis (SSc) are affected by dysautonomia but may be challenging to identify. We sought to determine whether patients with SSc who report discoloration in their feet have a higher burden of autonomic symptoms, including orthostatic, gastrointestinal (GI), urinary, secretomotor, and pupillomotor. Methods 167 patients with SSc completed the COMPASS-31 survey, which queries whether the patient experiences discoloration of the feet or hands. We compared the COMPASS-31 subdomain scores between SSc patients with and without foot discoloration. 79 patients with postural orthostatic tachycardia syndrome (POTS) also completed the COMPASS-31 questionnaire for comparison. Results We found that extremity discoloration is common in POTS and more often affects the feet, whereas in SSc the hands are more frequently involved. 62% of SSc patients report colour changes in their feet. These patients are more likely to have other autonomic symptoms, including orthostatic (11.7 ± 10.6 vs 8.6 ± 9.9, p= 0.06), GI (11.3 ± 4.3 vs 8.8 ± 4.3, p= 0.0003), urinary (1.4 ± 1.5 vs 0.8 ± 1.3, p= 0.002) and secretomotor (7.0 ± 3.8 vs 5.9 ± 3.8, p= 0.06) symptoms. These associations persist in a multivariable model after adjusting for potential confounders. Conclusion Dependent extremity discoloration is common in dysautonomia. Patients with SSc who report colour changes in their feet are more likely to report other symptoms of autonomic dysfunction.

The Importance of Patient Experience in Obtaining Mental Health Care at HRSA-Funded Health Centers

The Importance of Patient Experience in Obtaining Mental Health Care at HRSA-Funded Health Centers

Sensitivity Analysis Confirms Association of Patient Experience With Care and Adherence to Hypertension Medications

Sensitivity Analysis Confirms Association of Patient Experience With Care and Adherence to Hypertension Medications

The effectiveness of vedolizumab in advanced therapy-experienced ulcerative colitis patients: Real world data from the Inflammatory Bowel Disease of the Middle East (IBD-ME) Registry group.

Vedolizumab is an approved ulcerative colitis (UC) treatment. Multiple large randomized clinical trials have demonstrated the drug's efficacy and safety. However, real-world data from Middle Eastern countries are spare. The study aims to evaluate the clinical efficacy of vedolizumab (VDZ) therapy in advanced therapy experienced UC patients. A retrospective electronic chart review of a cohort study of 153 moderately to severely active UC patients who failed or were intolerant to TNF antagonists and received vedolizumab from two large tertiary care centers was performed. Rates of clinical response and remission were retrospectively evaluated at 3,6, and 12 months post VDZ therapy using Patient Simple Clinical Colitis Activity Index (P-SCCAI); clinical response was defined as a decrease in P-SCCAI ≥3, and clinical remission was defined as a P-SCCAI score of ≤3 points. Logistic regression analysis was used to identify predictors of response to vedolizumab. A total of 153 UC patients had sufficient data for analysis. Clinical remission rates were 61.9% for patients on vedolizumab every 8 weeks and 89.3% for those receiving every 4 (Q4) weeks dosing. A significant reduction in CRP and improvement of albumin post vedolizumab treatment were observed, and corticosteroids were stopped in most patients. In a multiple logistic regression analysis, several factors were found to influence the clinical effectiveness of VDZ in inducing remission. Female gender was associated with a higher likelihood of remission [OR =3.09, 95% CI = (1.05-9.13), P = 0.04]. Conversely, a greater number of biologics used prior to VDZ treatment was associated with a lower likelihood of remission [OR =0.418, 95% CI = (0.203-0.859), P = 0.017]. Patients with extensive disease (E3) had an increased likelihood of remission [OR =3.81, 95% CI = (1.32-10.97), P = 0.0129]. Additionally, a VDZ dosing frequency of Q4 weeks was associated with a significantly higher likelihood of remission [OR =6.08, 95% CI = (1.73-21.39), P = 0.0049]. No significant safety signals were reported. In this current real-world study, vedolizumab effectively achieved clinical response and remission in most advanced therapy experienced UC patients treated for up to 12 months. Future studies with larger sample sizes and more robust study designs should be conducted to further validate the results of this study.

Strengthening rural healthcare outcomes through digital health: qualitative multi-site case study

BackgroundRural populations experience ongoing health inequities with disproportionately high morbidity and mortality rates, but digital health in rural settings is poorly studied. Our research question was: How does digital health influence healthcare outcomes in rural settings? The objective was to identify how digital health capability enables the delivery of outcomes in rural settings according to the quadruple aims of healthcare: population health, patient experience, healthcare costs and provider experience.MethodsA multi-site qualitative case study was conducted with interviews and focus groups performed with healthcare staff (n = 93) employed in rural healthcare systems (n = 10) in the state of Queensland, Australia. An evidence-based digital health capability framework and the quadruple aims of healthcare served as classification frameworks for deductive analysis. Theoretical analysis identified the interrelationships among the capability dimensions, and relationships between the capability dimensions and healthcare outcomes.ResultsSeven highly interrelated digital health capability dimensions were identified from the interviews: governance and management; information technology capability; people, skills, and behaviours; interoperability; strategy; data analytics; consumer centred care. Outcomes were directly influenced by all dimensions except strategy. The interrelationship analysis demonstrated the influence of strategy on all digital health capability dimensions apart from data analytics, where the outcomes of data analytics shaped ongoing strategic efforts.ConclusionsThe study indicates the need to coordinate improvement efforts targeted across the dimensions of digital capability, optimise data analytics in rural settings to further support strategic decision making, and consider how consumer-centred care could influence digital health capability in rural healthcare services. Digital transformation in rural healthcare settings is likely to contribute to the achievement of the quadruple aims of healthcare if transformation efforts are supported by a clear, resourced digital strategy that is fit-for-purpose to the nuances of rural healthcare delivery.

Clinician and patient experiences with shared decision-making to promote daily arm use for individuals with chronic stroke: an exploratory qualitative study

PurposeTo explore the attitudes and experiences of clinicians and individuals with chronic stroke on the use of shared decision-making (SDM) during upper extremity rehabilitation to improve daily arm use in the home environment. Specifically, we aimed to describe clinician and client perspectives regarding the facilitators and barriers to using SDM within the context of a self-directed upper extremity intervention for individuals living in the community with chronic stroke.MethodsData were collected within the context of an interventional study examining the feasibility of the Use My Arm-Remote intervention. Focus group interviews were conducted with the clinicians (n = 3) providing the intervention and individual semi-structured interviews with the participants (n = 15) of the study. All interview data were collected after the end of the intervention period. Data were analyzed using thematic analysis.ResultsThe following themes were identified: (1) Equal partnership; (2) Enhancing clinician confidence; and (3) This is different. Facilitators and barriers were identified within each theme. Key facilitators for clinicians were competence with SDM and patient characteristics; while facilitators for patients were open and trusting relationships with clinicians and personalized experience. Key barriers to SDM for clinicians were lack of expertise in SDM and participant buy in; while patients identified a lack of foundational knowledge of stroke rehabilitation as a potential barrier.ConclusionsKey barriers were analyzed using the consolidated framework for advancing implementation science to interpret results and identify strategies for enhancing the implementation of SDM in a virtual setting. The CFIR-ERIC tool highlighted the need for targeted educational meetings and materials to address the training and educational needs of both clinicians and patients for future iterations of this intervention.

Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review.

Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. Methods: A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Results: Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. Conclusion: e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care.

Development of a questionnaire to assess the patient perspective regarding challenges in psoriatic arthritis treatment—a mixed-methods study

BackgroundLimited data exist on psoriatic arthritis (PsA) treatment in lower-income regions, particularly from the patient perspective. This study explores the challenges faced by socioeconomically vulnerable PsA patients and the reasons for non-adherence to treatment guidelines. The main objective of the study is to develop a questionnaire to identify the primary challenges in PsA treatment adherence and to analyze its feasibility while simultaneously understanding the target population’s unique characteristics.MethodsWe included PsA patients meeting the Classification Criteria for PsA (CASPAR), excluding those with other overlapping inflammatory diseases. The study, supported by two patient-research partners, began with focus groups to identify treatment challenges, leading to the creation of a 26-item questionnaire. Its reliability was verified using the test-retest method, targeting a percent agreement ≥ 0.8. Then, PsA patients at a rheumatology clinic completed the final survey.ResultsThe study involved 69 PsA patients. The final questionnaire contained 26-questions across five-domains, with a 92.2% agreement rate and an average completion time of 8.3 minutes. Diagnostic delays exceeded a year for 59% of patients and more than two years for 33%. Daily life disruptions affected 43.2% of patients, with 35.3% taking sick leave or retiring. Around 25% waited over 8 weeks for drug approval, and 17.6% required legal intervention to access medication. Drug dispensation issues impacted about 60% of patients. Furthermore, 66.7% lived far from their rheumatologist, with 49% traveling over an hour for appointments. Approximately 30% were unaware of the risks of methotrexatein relation to alcohol consumption and pregnancy.ConclusionsThe questionnaire was feasible and reliable, with its results underscoring patient-centric challenges in PsA management, particularly concerning diagnostic delays and medication access, as well as daily life disruptions and misinformation. These findings emphasize the urgency for healthcare reforms aimed at improving diagnosis efficiency, patient education, and streamlined medication access, emphasizing the need for tailored initiatives to improve the healthcare experience for PsA patients.

Follow-up care experience of patients with invasive meningococcal disease and their family caregivers: a qualitative study

BackgroundClinical guidelines recommend systematic follow-up of patients surviving invasive meningococcal disease (IMD) to assess sequelae. However, little is known about survivors and family caregivers’ experiences of the follow-up care. Study sought to explore IMD survivors’ and their family caregivers’ experiences after hospitalization for IMD and to identify unmet needs.MethodsSemi-structured interviews were conducted with patients and family caregivers, identified through hospitals database. Interviews were audiotaped, transcribed and subject to a thematic analysis. NVivo software was used for data management and analysis.ResultsEight IMD survivors and 14 family caregivers were interviewed. Three themes were identified from the data: (1) perception of patient and family caregiver on follow-up after IMD and role of healthcare professionals; (2) access to care and support; (3) relationship with healthcare professionals. Although most were satisfied with follow-up care after IMD, suggestions for improving the healthcare pathway were made relating information on potential sequelae and follow-up care, coordination, and access to psychological support.ConclusionsThis study confirms the need for more structured follow-up care for patients suffering from IMD and their families which is currently limited and focused on physical recovery. Optimal follow-up should aim to provide sufficient information, emotional support and logistical support for patient and family caregivers.Trial registrationEthics Committee of University of Lyon, France (ref: 2022-06-23-002).

Hospital discharge processes: Insights from patients, caregivers, and staff in an Australian healthcare setting

Hospital discharge is a pivotal point in healthcare delivery, impacting patient outcomes and resource utilisation. Ineffective discharge processes contribute to unplanned hospital readmissions. This study explored hospital discharge process from the perspectives of patients, caregivers, and healthcare staff. Qualitative data were collected through semi-structured interviews with adult patients being discharged home from a medical ward, their caregivers, and healthcare staff at an Australian hospital. Thematic analysis followed established guidelines for qualitative research. A total of 65 interviews and 21 structured observations were completed. There were three themes: i) Communication, ii) System Pressure, and iii) Continuing Care. The theme ‘Communication’ highlighted challenges and inconsistencies in notifying patients, caregivers, and staff about discharge plans, leading to patient stress and frustration. Information overload during discharge hindered patient comprehension and satisfaction. Staff identified communication gaps between teams, resulting in uncertainty regarding discharge logistics. The theme ‘System Pressure’ referred to pressure to discharge patients quickly to free hospital capacity occasionally, even in the face of inadequate service provision on weekends and out-of-hours. The ‘Continuing Care’ theme drew attention to gaps in patient understanding of follow-up appointments, underscoring the need for clearer post-discharge instructions. The lack of structured systems for tracking referrals and post-discharge care coordination was also highlighted, potentially leading to fragmented care. The findings resonate with international literature and the current emphasis in Australia on improving communication during care transitions. Furthermore, the study highlights the tension between patient-centred care and health service pressure for bed availability, resulting in perceptions of premature discharges and unplanned readmissions. It underscores the need for strengthening community-based support and systems for tracking referrals to improve care continuity. These findings have implications for patient experience and safety and suggest the need for targeted interventions to optimise the discharge process.

Musculoskeletal patients’ preferences for care from physiotherapists or support workers: a discrete choice experiment

BackgroundDelegation of clinical tasks from physiotherapists to physiotherapy support workers is common yet varies considerably in musculoskeletal outpatient physiotherapy services, leading to variation in patient care. This study aimed to explore patients’ preferences and estimate specific trade-offs patients are willing to make in treatment choices when treated in musculoskeletal outpatient physiotherapy services.MethodsA discrete choice experiment was conducted using an efficient design with 16 choice scenarios, divided into two blocks. Adult patients with musculoskeletal conditions recruited from a physiotherapy service completed a cross-sectional, online questionnaire. Choice data analyses were conducted using a multinomial logit model. The marginal rate of substitution for waiting time to first follow-up physiotherapy appointment and distance from the physiotherapy clinic was calculated and a probability model was built to estimate the probability of choosing between two distinct physiotherapy service options under different scenarios.Results382 patient questionnaires were completed; 302 participants were treated by physiotherapists and 80 by physiotherapists and support workers. There was a significant preference to be seen by a physiotherapist, have more follow-up treatments, to wait less time for the first follow-up appointment, to be seen one-to-one, to see the same clinician, to travel a shorter distance to get to the clinic and to go to clinics with ample parking. Participants treated by support workers did not have a significant preference to be seen by a physiotherapist and it was more likely that they would choose to be seen by a support worker for clinic scenarios where the characteristics of the physiotherapy service were as good or better.ConclusionsFindings highlight that patients treated by support workers are likely to choose to be treated by support workers again if the other service characteristics are as good or better compared to a service where treatment is provided only by physiotherapists. Findings have implications for the design of physiotherapy services to enhance patient experience when patients are treated by support workers. The findings will contribute to the development of “best practice” recommendations to guide physiotherapists in delegating clinical work to physiotherapy support workers for patients with musculoskeletal conditions.

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

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

Evaluating video and hybrid group consultations in general practice: mixed-methods, participatory study protocol (TOGETHER 2)

Background General practice is facing an unprecedented challenge in managing the consequences of the pandemic. In the midst of a policy drive to balance remote and in-person service provision, substantial workload pressures remain, together with increasing prevalence of long-term conditions, and declining staff numbers and morale. To address these challenges, some practices in the UK have been delivering video and hybrid group consultations (VHGCs) providing clinical care to multiple patients at the same time. Despite positive initial findings and enthusiasm, there are still gaps in our understanding of the influence VHGCs have on patient experience, healthcare utilisation, quality, safety, equity and affordability. Objectives To generate an in-depth understanding of VHGCs for chronic conditions in general practice, surface assumptions and sociotechnical dynamics, inform practice and extend theorisation. Methods Mixed-methods, multi-site research study using co-design and participatory methods, from qualitative, quantitative and cost-related perspectives. WP1 includes a national, cross-sectional survey on VHGC provision across the UK. In WP2 we will engage patients and general practice staff in co-design workshops to develop VHGC models with emphasis on digital inclusion and equity. In WP3 we will carry out a mixed-methods process evaluation in up to 10 GP practices across England (5 sites already running VHGCs and 5 comparison sites). Qualitative methods will include interviews, focus groups and ethnographic observation to examine the experiences of patients, carers, clinical and non-clinical NHS staff, commissioners and policy-makers. Quantitative methods will examine the impact of VHGCs on healthcare utilisation in primary and secondary care, patient satisfaction, engagement and activation. We will also assess value for money of group and individual care models from a health economics perspective. Conclusions We aim to develop transferable learning on sociotechnical change in healthcare delivery, using VHGCs as an exemplar of technology-supported innovation. Findings will also inform the design of a future study.

Virtual Nursing to Improve Patient and Team Member Experiences at NewYork-Presbyterian Hospital

Virtual Nursing to Improve Patient and Team Member Experiences at NewYork-Presbyterian Hospital

Beyond genetics: integrative oncology and the metabolic perspective on cancer treatment

Cancer is traditionally approached as a genetic disease, with standard treatments including chemotherapy, radiation, targeted therapy, immunotherapy, and surgery significantly improving survival rates and patient outcomes. However, there is a growing recognition of the need for integrative oncology, which expands cancer management by considering cancer as a metabolic disease. Integrative medicine physicians employ holistic therapies focused on patients’ needs, aiming to correct the metabolic imbalances associated with cancer and alleviate cancer-related symptoms. Viewing cancer as a metabolic disease involves addressing factors such as an acidic microenvironment, vitamin C deficiency, mitochondrial dysfunction, reduced intracellular oxygen levels, elevated oxidative stress, dysfunctional autophagy, and psychological stress. This paper presents an overview of the evidence and comprehensive strategies supporting integrative medicine approaches in addressing cancer metabolism in integrative oncology settings. Furthermore, the paper underscores the necessity of integrating different cancer theories—genetic and metabolic—for improved patient outcomes and experiences. By combining these perspectives, integrative oncology offers a more holistic, patient-centered approach to cancer treatment.

The Experiences of Patients Enrolled in Community Mental Health Centers Regarding the Illness Process: A Phenomenological Study.

The aim of this study is to explore in-depth the experiences of patients enrolled in Community Mental Health Centers regarding the illness process. This study employed interpretative phenomenological analysis (IPA), one of the phenomenological design approaches within qualitative research methods. The study was conducted between 24 May 2023 and 23 December 2023, at two different Community Mental Health Centers located in the eastern and western regions of Turkey. Maximum variation sampling was employed in the selection of the sample, which consisted of 12 patients registered at the Community Mental Health Centers. Data were collected using a semi-structured interview form. The interviews were conducted face-to-face and audio-recorded. Content analysis was performed using the MAXQDA 2022 software package. The study was written following the COREQ checklist. Based on the expressions of the patients, themes, subthemes and codes were identified. Accordingly, three themes were determined: 'emotions felt after diagnosis', 'changes in life with the illness process' and 'coping methods with the process'. This study highlights that patients from diverse geographical backgrounds, served by Community Mental Health Centers, share similar cultural and emotional experiences during their illness. These findings underscore the need for tailored interventions that address universal challenges faced by patients across different regions. This research emphasises the necessity of comprehensive efforts to improve societal understanding, support mechanisms and employment prospects for individuals dealing with mental health issues in Community Mental Health Centers.

Impact of hepatitis B immunoglobulin mode of administration on treatment experiences of patients after liver transplantation: Results from an online survey.

Hepatitis B immunoglobulin (HBIG) in combination with a potent nucleos(t)ide analog is considered the standard of care for prophylaxis against hepatitis B virus (HBV) reinfection after liver transplantation for HBV-associated disease. To evaluate patients' satisfaction, preferences, and requirements for subcutaneous (SC), intramuscular (IM), and intravenous (IV) HBIG treatments. A self-completion, cross-sectional, online, 22-question survey was conducted to examine perceptions and satisfaction with current HBIG treatment in adults receiving HBIG treatment following liver transplantation for HBV-associated disease in France, Italy, and Turkey. Hypothetical HBIG products with different administration modes were evaluated using target product profile assessment and a conjoint (trade-off) exercise. Ninety patients were enrolled; 32%, 17%, and 51% were SC, IM, and IV HBIG users, respectively. Mean duration of treatment was 36.2 months. SC HBIG had the least negative impact on emotional well-being and social life and was perceived as the most convenient, easiest to administer, least painful, and had the highest self-rating of treatment compliance. More IM HBIG users than SC or IV HBIG users reported that administration frequency was excessive (67%, 28%, and 28%, respectively). In the target product profile assessment, 76% of patients were likely to use hypothetical SC HBIG. In the conjoint exercise, administration route, frequency, and duration were key drivers of treatment preferences. Ease, frequency, duration, and side effects of HBIG treatment administration were key drivers of treatment preferences, and SC HBIG appeared advantageous over IM and IV HBIG for administration ease, convenience, and pain. A hypothetical SC HBIG product elicited a favorable response. Patient demographics, personal preferences, and satisfaction with HBIG treatment modalities may influence long-term treatment compliance.