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In 2020, female breast cancer was the most commonly diagnosed cancer worldwide, representing the type of cancer with the highest incidence among women and the second most common cause of cancer death among women in all OECD countries. The conventional measures addressing the burden of breast cancer by measuring mortality, incidence, and survival do not entirely reflect the quality of life and patients experience when receiving breast cancer care. The main objective of this study is to capture patient-reported outcomes and experiences in women with breast cancer in Portugal using methods developed for international benchmarking purposes, such as the OECD Patient-reported Indicators Surveys. The study included 378 women with breast cancer, with the age distribution being 19.8% aged 15 to 49 years and 80.2% aged 50 years and over. The data collection procedure and analysis followed the “OECD Breast Cancer Patient Reported Outcomes Working Group” protocol, allowing subsequent comparability with data from other OECD member countries. Most women were satisfied with the treatment outcome regarding the shape of their lumpectomy breast when wearing a bra (96.1%) and with the equal size of both breasts (78.3%). Findings on the WHO QOL-BREF showed that women manifest a lower score in well-being when compared with the general population or populations living with chronic diseases. This study shows the feasibility of implementing and using patient-reported metrics (PROM and PREM) in breast cancer services in Portugal. Measuring PROMs and PREMs from Portuguese women receiving breast cancer care provides insightful evidence into the quality and value of cancer care.

Mental ill-health is increasingly recognized by policymakers for its significant human and economic toll. The main objective of this study is to capture patient-reported outcomes and experiences on mental health care in Portugal using methods developed for international benchmarking purposes, such as the OECD Patient-reported Indicators Surveys. The study included 397 participants, 247 (62.2%) women, divided into four age groups: ages 16–24 years, ages 25–44 years, ages 45–65 years, and ages 66 years or older. The data collection procedure and analysis followed the OECD PaRIS Mental Health Working Group 2021 protocol allowing subsequent comparability with data from other OECD member countries. Findings on the WHO-5 Well-Being Index showed that women manifest a lower score in well-being following mental health care services use. This finding may be, at least in part, explained by the study population (mental health services users), including individuals with clinical depression which is more frequently observed in women. In terms of the level of satisfaction with treatment (provided by nurses, doctors, phycologists, etc.) the response “Yes, definitely” varied from 67% of answers regarding “time spent by care providers”, 76.3% “involvement in decisions” to 79.7% regarding “clarity of explanations” and 84.4% regarding the item courtesy and respect. This study shows the feasibility of implementing and using patient-reported metrics (PROM and PREM) in mental health services in Portugal. The study results generate useful clinical information to help meet the expectations and needs of patients, contributing to a continuous improvement of mental health community services.

Knowledge about patient experience within emergency departments (EDs) allows services to develop and improve in line with patient needs. There is no standardized instrument to measure patient experience. The aim of this study is to identify patient reported experience measures (PREMs) for EDs, examine the rigour by which they were developed and their psychometric properties when judged against standard criteria. Medline, Scopus, CINAHL, PsycINFO, PubMed and Web of Science were searched from inception to May 2015. Studies were identified using specific search terms and inclusion criteria. A total of eight articles, reporting on four PREMs, were included. Data on the development and performance of the four PREMs were extracted from the articles. The measures were critiqued according to quality criteria previously described by Pesudovs K, Burr JM, Harley C, et al. (The development, assessment, and selection of questionnaires. Optom Vis Sci 2007;84:663-74.). There was significant variation in the quality of development and reporting of psychometric properties. For all four PREMs, initial development work included the ascertainment of patient experiences using qualitative interviews. However, instrument performance was poorly assessed. Validity and reliability were measured in some studies; however responsiveness, an important aspect on survey development, was not measured in any of the included studies. PREMS currently available for use in the ED have uncertain validity, reliability and responsiveness. Further validation work is required to assess their acceptability to patients and their usefulness in clinical practice.

Context Patient‐reported experience measures (PREMs) generate insights into daily challenges experienced when living with a chronic condition and experiences of care. There are no validated PREMs to measure the experience of hearing loss. Objective The aim of this study was to evaluate the psychometric properties of a newly developed tool, ‘My Hearing PREM’, designed to assess the experience of living with hearing loss and receiving audiology care. Setting and Participants Adults with hearing loss (n = 401) were recruited from audiology clinics in Scotland and England, and non‐clinical routes such as lip‐reading classes, clinical research networks, national charity links and social media. Design Participants completed a 27‐item PREM alongside validated scales to measure communication difficulties, loneliness, quality of life, decisional conflict and health literacy. Modern (Rasch) and traditional psychometric analysis techniques (internal consistency and construct validity) were used to assess the psychometric properties of the My Hearing PREM. Results Factor analysis of the initial 27 items produced 3 subscales: Emotional Burden, Support and Communication, after 4 items were removed due to poor fit. Rasch analysis was carried out on each of these subscales and a further 7 items with poor fit to the Rasch model were removed. This resulted in a long‐form 16‐item (My Hearing PREM‐16) demonstrating good internal reliability (Cronbach's α = 0.91). Each subscale showed good internal reliability (0.91, 0.85 and 0.71). A short‐form (My Hearing PREM‐9) version was developed for use in clinical practice (α = 0.79). Both forms of the PREM demonstrated medium to strong significant correlations with the validated measures. Conclusion Both the My Hearing PREM‐16 and My Hearing PREM‐9 are reliable measures with good construct validity. They provide a way for healthcare professionals to understand how hearing loss is affecting an individual's emotional well‐being, social interactions and communication. Ongoing research is exploring the feasibility of My Hearing PREM in routine audiology practice. Patient or Public Contribution We developed the project in collaboration with members of the public who have lived experience of hearing loss, recruited through Aston University and volunteer networks connected to audiology services. Additionally, we engaged with individuals more likely to be impacted by hearing loss, including adults with learning disabilities, older adults in residential care, and members of South Asian communities (Bangladeshi, Indian and Pakistani). These stakeholders provided valuable feedback on the study's aims, the content and format of the My Hearing PREM items, the survey design and recruitment strategies.

Purpose Patient-reported outcome and experience measures (PROMs/PREMs) are well established in research for many health conditions, but barriers persist for implementing them in routine care. Implementation science (IS) offers a potential way forward, but its application has been limited for PROMs/PREMs. Methods We compare similarities and differences for widely used IS frameworks and their applicability for implementing PROMs/PREMs through case studies. Three case studies implemented PROMs: (1) pain clinics in Canada; (2) oncology clinics in Australia; and (3) pediatric/adult clinics for chronic conditions in the Netherlands. The fourth case study is planning PREMs implementation in Canadian primary care clinics. We compare case studies on barriers, enablers, implementation strategies, and evaluation. Results Case studies used IS frameworks to systematize barriers, to develop implementation strategies for clinics, and to evaluate implementation effectiveness. Across case studies, consistent PROM/PREM implementation barriers were technology, uncertainty about how or why to use PROMs/PREMs, and competing demands from established clinical workflows. Enabling factors in clinics were context specific. Implementation support strategies changed during pre-implementation, implementation, and post-implementation stages. Evaluation approaches were inconsistent across case studies, and thus, we present example evaluation metrics specific to PROMs/PREMs. Conclusion Multilevel IS frameworks are necessary for PROM/PREM implementation given the complexity. In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources. Theoretically guided studies are needed to clarify how, why, and in what circumstances IS principles lead to successful PROM/PREM integration and sustainability.

Background: The complexity of treatment pathways and the chronic nature of diseases in vascular surgery necessitate a patient-centred approach to improve care quality and health outcomes. Objectives: To explore vascular patients’ experiences, identifying key factors influencing their satisfaction and adherence to treatment. Study Design: Qualitative design using thematic analysis Methods: Seventeen semi-structured interviews were conducted with vascular patients (10 males and 7 females) from 3 vascular units in Wales. Proportional random sampling was used for participant selection based on recent vascular care, age, sex, and clinical backgrounds. Interviews were conducted in person, recorded, and transcribed verbatim. Thematic analysis was employed to identify key themes. NVivo 10 software facilitated data management. Results: Six themes were identified: (i) communication and information delivery, (ii) patient involvement in decision-making, (iii) pain management, (iv) psychological and emotional support, (v) healthcare environment and systemic processes and (vi) continuity of care and post-discharge experience. While patients generally appreciated the professionalism of the healthcare staff, notable disparities emerged in communication, particularly for patients with lower health literacy or during waiting periods. Inconsistencies in discharge planning and follow-up care highlighted systemic inequities. Across all units, patients reported a lack of formal psychological support. Involvement in decision-making varied, with some patients feeling adequately included, while others experienced exclusion and anxiety. Conclusion: These findings reveal key areas for improvement, with communication serving as a foundational element that enhances patient involvement in decision-making, psychological support, and continuity of care. Addressing these interconnected areas, with a focus on effective communication and health equity, may help close care gaps and improve outcomes for all vascular patients.

We developed a chronic obstructive pulmonary disease (COPD) patient-reported experience measure (PREM-C9). 174 patients with COPD (86 [49%] with a confirmed diagnosis and 88 [51%] with a self-reported diagnosis of COPD) completed a 38-item list, COPD Assessment Test (CAT) and Hospital Anxiety and Depression Scale (HADS). Hierarchical and Rasch analysis produced a 9-item list (PREM-C9). It demonstrated fit to the Rasch model (χ² p=0.33) and correlated moderately with CAT (r=0.42), HAD-anxiety (r=0.30) and HAD-depression (r=0.41) (p<0.05). A substudy confirmed its ability to detect change prepulmonary and postpulmonary rehabilitation. The PREM-C9 is a simple, valid measure of experience of patients living with COPD, validated in this study population with mild to very severe disease; it may be a useful measure in research and clinical audits.

Background Advances in cancer care require ongoing monitoring of patient satisfaction using rigorous questionnaires. The EORTC Quality of Life Group has cross-culturally developed a patient satisfaction core questionnaire (PATSAT-C33) to be used in any hospital cancer care settings and an outpatient satisfaction module (OUT-PATSAT7) to address specific aspects of ambulatory care. This multi-center international prospective study aimed to validate the PATSAT-C33 and OUT-PATSAT7, including assessing its acceptability. Methods Patients ( N  = 690) affected by any cancer site or stage equally distributed by age and gender, were enrolled in in- and out-patient cancer settings from 20 institutions, 12 countries and 5 geographic/cultural areas. Among them, 675 completed the PATSAT-C33 alongside the EORTC QLQ-C30, Oberst’s perception of care quality 5-item, and ‘ intention to recommend the hospital’ 1-item. Among the 532 outpatients, 526 also completed the OUT-PATSAT7. A subset completed a two-week retest ( N  = 120 & 96 for the PATSAT-C33 & OUT-PATSAT7, respectively) or one-year responsiveness-to-change assessment (RCA) ( N  = 166 & 155). Comprehensive psychometric testing was performed. Results Full item completion was high (85% & 88%), 83% of patients took ≤ 20 min to complete both questionnaires (40 items); 5% of patients required help with understanding questionnaire items. Confirmatory factor analyses evidenced satisfactory fit on the eleven PATSAT-C33 and two OUT-PATSAT7 multi-item scales (CFI/TLI > 0.90; RMSEA < 0.10 and = 0.108, respectively). Internal consistency was good to excellent (all ≥ 0.80); test–retest reliability was fair (0.48, 1 scale), good (0.60–0.74, 11 scales) to excellent (≥ 0.75, 7 scales). Convergent validity was supported by correlations of ≥ 0.40 with related Oberst’s scales and < 0.30 with unrelated QLQ-C30 scales. Known-groups differences was shown for comorbidity, toxicity, global health, care expectations and intention to recommend the hospital. Change over time was captured in groups defined based on change in global health, cancer care setting, and the receipt of supportive care over the past year. Conclusions This study supports the psychometric robustness of the EORTC PATSAT-C33 and OUT-PATSAT7 and their promising usefulness in monitoring cancer care within and across cancer care settings from different cultures and cancer patient populations. Trial registration ClinicalTrials.gov ID: NCT05989191, August 2, 2023.

BackgroundFrom clinical experience, many patients undergoing robotic assisted surgery (RAS) have a poor understanding of the technology. To ensure informed consent and appropriate expectations, a needs assessment for patient-centered education and outcome metrics in RAS is warranted. Our goal was to perform an assessment of patient understanding, comfort with robotic technology, and ability to obtain critical information from their surgeon when undergoing RAS.MethodsTwenty patients planned for RAS by three surgeons were asked to complete a six-item Likert agreement scale survey prior to signing informed consent. The study coordinator administered surveys, while the surgeon left the room. Indicator statements were crafted to reduce bias and two-way evaluated for consistency. The surgeons were additionally asked their perception of each patient’s understanding and comfort with RAS. Frequency statistics and tendencies were analyzed.ResultsSurgeons strongly agreed all patients appropriately understood how RAS functioned and would ask more questions before signing consent, if needed. Patients were predominately not familiar with RAS and felt surgeons did not explain how RAS worked. There was wide variability on if patients understood how RAS worked for their treatment. Overall, patients were not completely comfortable with RAS for their care, did not understand the risks of RAS compared to other approaches, and did not feel their surgeon understood what they needed to know to make informed decisions.ConclusionsThis needs assessment demonstrated critical gaps in patient knowledge about RAS, surgeon communication skills, and the ability of surgeons to know what was important from the patient perspective. The development of RAS patient-centered education and outcome metrics could help address these gaps.

Introduction As part of a broader study entitled OncoPREMs, which aims to develop a tool to assess patients’ experiences throughout their oncology care pathway, we explored patients’ perceptions and expectations from the first signs of illness to the post-cancer phase, as well as their experience of living with cancer. Methods A qualitative study was conducted using semi-structured interviews with patients who had been treated or were undergoing treatment for cancer in various healthcare facilities in France. Patients were recruited by healthcare professionals at their care sites. Results A total of 28 interviews were conducted between May and August 2023 (14 men, 14 women). The most common types of cancer were breast, digestive, and urological cancers. Thematic analysis identified several key themes related to the patient experience: the period of disease discovery and diagnosis; treatment follow-up and management of side effects; and the post-cancer phase or “living with cancer.” Conclusion The results of this study show that the different stages of the care pathway generally meet the expectations and needs of patients treated for cancer. However, patients expressed hopes for further developments, such as more support and guidance for their caregivers from healthcare professionals.