Person-Centered Coordinated Care Experience of People With Long-Term Conditions in the Balearic Islands Measured by the P3CEQ.

Objective: This study aimed to use the Person-Centered Coordinated Care Experience Questionnaire (P3CEQ) to assess the experience of person-centered coordinated care among people with long-term conditions in the Balearic Islands, Spain. Methods: Over 1300 participants receiving treatment for chronic conditions or HIV pre-exposure prophylaxis were invited to complete the P3CEQ and a socio-demographic questionnaire, both administered electronically via the Naveta app. The P3CEQ assesses the key domains of the P3C through an 11-item questionnaire. Items 1, 2, 3, 4, 5, 8, 9 and 10 assess specifically person-centredness (PC subscale), while items 5, 6, 7, 8 and 9 measure care coordination (CC subscale; question 7 includes 4 sub-questions to specifically assess care plans). Descriptive statistics were used to summarize patient characteristics and P3CEQ items scores. Data analysis included chi-squared test of independence, Student's t-test and analysis of variance test. Pairwise comparisons were adjusted by Bonferroni correction. Results: The P3CEQ and a socio-demographic questionnaire were sent to 1313 individuals (651 men, 657 women, 5 'other gender'). A response rate of 35.34% was achieved, with 464 P3CEQ responders (223 men and 241 women). Significant differences in response rates were observed by age, smoking status, alcohol consumption, membership of patient organizations, and use of alternative medicine. Care planning was rated significantly lower than other measured domains. Women experienced less person-centered care than men (16.64 vs 17.91) and rated care coordination worse than their male counterparts (9.18 vs 10.23). There were also differences in scores between medical condition types, with cancer and inflammatory bowel disease patients rating highest for both person-centered care (21.20 and 19.13, respectively) and care coordination (10.70 vs 10.88, respectively). Patients with skin and rheumatic diseases rated lowest their experience of person-centered care. People with higher education and those employed or studying experienced better person-centeredness. Conclusion: Using the P3CEQ, we detected significant differences in the care experiences of people with chronic conditions, suggesting the need to address potential gender biases, social inequalities, and the poorer ratings observed for certain conditions in the study population.

Pilot therapeutic education program in multiple system atrophy: Safety, quality of life and satisfaction from a national registry based longitudinal study.

BACKGROUND: Therapeutic education programs are effective in several chronic conditions. However, evidence is lacking in multiple system atrophy (MSA). We aimed to assess efficacy and safety of a comprehensive therapeutic education program in people with MSA (PwMSA) and their caregivers. METHODS: In this prospective longitudinal study we included 16 PwMSA and their main caregivers in 4 groups of 4 dyads each. The program consisted of eight 60-min interdisciplinary sessions: introduction, orthostatic hypotension, speech therapy, gait and respiratory physiotherapy, psychological support, urinary dysfunction, occupational therapy/social work. UMSARS, NMSS, PDQ39, EQ5 and Zarit scales were administered at baseline and 6 months later. After each session participants filled-out a modified EduPark satisfaction questionnaire and a Likert scale. Educational material was generated for each session after suggestions by participants. RESULTS: At baseline PwMSA and caregivers were comparable in age and sex, with significant correlation between UMSARS-IV (disability) and PDQ39 (quality of life). Adherence to sessions was of 94,92 %. Total modified EduPark scores and Likert scales did not differ in PwMSA vs. caregivers, mild-moderate vs. severe-advanced cases or between genders. The significant difference in satisfaction across sessions (p = 0.03) was driven by higher scores in speech, respiratory and occupational therapy sessions. Longitudinally there was no significant worsening in any scale, nor a significant increase post-vs. pre-program in the number of consultations. CONCLUSIONS: The healthcare education program in MSA was feasible, satisfactory, and safe for patients and caregivers. The educational material of the program is being forwarded to incident MSA cases attending our clinic.

Patient-Reported Outcome and Experience Measures in Advanced Nursing Practice: What Are Key Considerations for Implementation and Optimized Use?

OBJECTIVE: To discuss the opportunities and challenges of implementing patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) within advanced practice nursing services in cancer care. METHODS: This discussion paper has been informed by an environmental scan of evidence from systematic reviews and primary studies evaluating the use and implementation of PROMs and PREMs. Literature from the contexts of cancer and chronic disease, including nursing and multidisciplinary supportive care literature, has been included. RESULTS: Advanced practice nurses are well-positioned to evaluate and respond to PROMs and PREMs data; several studies have highlighted improved patient outcomes concerning quality of life, symptom distress, and functional status within nurse-led services. Nevertheless, the implementation of PROMs and PREMs in cancer care and nurse-led services is variable. Previous studies have highlighted implementation challenges, which can hinder comparability and generalizability of PROMs and PREMs instruments. Advanced practice nurses should consider these challenges, including ways to use standardized PROM instruments. Electronic PROMs, while efficient, may exclude individuals at risk of inequity. Complex, lengthy, and frequent administration of PROMs may also overburden people living with or after cancer, with people affected by cancer expressing preference for flexible use in some studies. Therefore, the involvement of people affected by cancer in planning for PROMs/PREMs implementation may overcome this challenge. Finally, organizational considerations in implementation should address financial investments, including initial costs for technology and training and consideration of the operationalization of PROMs within existing infrastructure for the seamless utilization of PROMs data. CONCLUSION: Despite the potential of advanced practice nursing services to enhance patient-reported outcomes and experiences, variability in the implementation of PROMs and PREMs poses challenges. Use of validated measures, electronic or paper-based instruments, and the preferences of people affected by cancer for the use of PROMs and PREMs must be carefully considered in consultation with end users for successful implementation. IMPLICATIONS FOR PRACTICE: In planning for the implementation of PROMs and PREMs within nurse-led services, implementation risks may be mitigated through establishing clear guidelines for their use, investment in the development of the required infrastructure, user education, and rigorous implementation processes, including patient involvement in PROMs/PREMs selection.

El paradigma de la irradiación corporal total en la leucemia linfoblástica aguda: efectividad terapéutica frente a los desafíos de toxicidad / The paradigm of total body irradiation in acute lymphoblastic leukemia: Therapeutic effectiveness against the challenges of toxicity

Introducción: La irradiación corporal total (ICT) forma parte del acondicionamiento mieloablativo del trasplante de progenitores hematopoyéticos (TPH) en hemopatías malignas. Esta terapia ha demostrado recientemente mayor supervivencia en leucemia linfoblástica aguda (LLA) frente a regímenes basados en quimioterapia. Sin embargo, los efectos secundarios son una limitación importante, especialmente en la población pediátrica.Pacientes y métodosAnalizamos retrospectivamente la supervivencia de pacientes con LLA que recibieron un TPH en un hospital terciario entre los años 1996 a 2009 (N=69 TPH en 57 pacientes). Diferenciamos una cohorte que había recibido ICT (N=44) y otra que no (N=25). Posteriormente entrevistamos a los supervivientes del grupo ICT con un mínimo de 10 años de seguimiento (N=18), preguntando acerca de la presencia de efectos secundarios.ResultadosLa supervivencia global (SG) a los 2 y 5 años fue del 79,1 y 65,2%, respectivamente para el grupo ICT y del 66,2 y 55,8% para el grupo no ICT, aunque esta diferencia no fue significativa (p=0,31). La supervivencia libre de evento (SLE) a los 2 y 5 años fue del 77,3 y 63,6%, respectivamente para el grupo ICT y del 56 y 32% para el grupo no ICT (p=0,02). La probabilidad de recidiva (PR) a los 2 años habiendo recibido ICT fue del 10% y sin haber recibido ICT del 28,6% (p=0,005). Los supervivientes que recibieron ICT desarrollaron neoplasias secundarias (39%), dislipemia (67%), alteraciones cognitivas (44%), infecciones respiratorias de repetición (39%), alteraciones tiroideas (45%), insuficiencia ovárica precoz (89%), cataratas (22%) y problemas psicológicos (44%), aunque la calidad de vida, valorada por ellos mismos, fue considerada como buena para el 83% de los encuestados.ConclusionesLos pacientes que recibieron ICT tuvieron significativamente mayor SLE y menor PR. Sin embargo, los efectos adversos son frecuentes e importantes, aunque no afectan subjetivamente a la calidad de vida. (AU)

Introduction: Total body irradiation (TBI) is part of the myeloablative conditioning for hematopoietic stem cell transplantation (HSCT) in malignant hematologic disorders. This therapy has recently shown improved survival in acute lymphoblastic leukemia (ALL) compared to chemotherapy-based regimens. However, side effects are a significant limitation, especially in the pediatric population.Patients and methodsWe retrospectively analyzed the survival of patients with ALL who underwent an HSCT at a tertiary hospital between 1996 and 2009 (N=69 HSCT in 57 patients). We differentiated a cohort that received TBI (N=44) from another that did not (N=25). Subsequently, we interviewed the survivors from the TBI group with a minimum of 10 years of follow-up (N=18), asking about the presence of side effects.ResultsThe overall survival (OS) at 2 and 5 years was 79.1% and 65.2% respectively for the TBI group and 66.2% and 55.8% for the non-TBI group, although this difference was not significant (P=.31). The event-free survival (EFS) at 2 and 5 years was 77.3% and 63.6% respectively for the TBI group and 56% and 32% for the non-TBI group (P=.02). The probability of relapse (PR) at 2 years for those who received TBI was 10% compared to 28.6% for those who did not receive TBI (P=.005). Survivors who received TBI developed secondary neoplasms (39%), dyslipidemia (67%), cognitive impairments affecting memory (44%), recurrent respiratory infections (39%), thyroid abnormalities (45%), premature ovarian failure (89%), cataracts (22%), and psychological problems (44%). However, the quality of life, as self-assessed by the patients, was considered good for 83% of the participants.ConclusionsPatients who received TBI had significantly higher EFS and lower PR. However, adverse effects are frequent and significant, although they do not subjectively affect quality of life. (AU)

Barriers and enablers to the implementation of patient-reported outcome and experience measures (PROMs/PREMs): protocol for an umbrella review.

BACKGROUND: Patient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients' perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings. METHODS: An umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary. DISCUSSION: This umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42023421845.

The paradigm of total body irradiation in acute lymphoblastic leukaemia: Therapeutic effectiveness versus the challenges of toxicity.

INTRODUCTION: Total body irradiation (TBI) is part of the myeloablative conditioning for hematopoietic stem cell transplantation (HSCT) in malignant hematologic disorders. This therapy has recently shown improved survival in acute lymphoblastic leukemia (ALL) compared to chemotherapy-based regimens. However, side effects are a significant limitation, especially in the pediatric population. PATIENTS AND METHODS: We retrospectively analyzed the survival of patients with ALL who underwent an HSCT at a tertiary hospital between 1996 and 2009 (N = 69 HSCT in 57 patients). We differentiated a cohort that received TBI (N = 44) from another that did not (N = 25). Subsequently, we interviewed the survivors from the TBI group with a minimum of 10 years of follow-up (N = 18), asking about the presence of side effects. RESULTS: The overall survival (OS) at 2 and 5 years was 79.1% and 65.2% respectively for the TBI group and 66.2% and 55.8% for the non-TBI group, although this difference was not significant (P=.31). The event-free survival (EFS) at 2 and 5 years was 77.3% and 63.6% respectively for the TBI group and 56% and 32% for the non-TBI group (P=.02). The probability of relapse (PR) at 2 years for those who received TBI was 10% compared to 28.6% for those who did not receive TBI (P=.005). Survivors who received TBI developed secondary neoplasms (39%), dyslipidemia (67%), cognitive impairments affecting memory (44%), recurrent respiratory infections (39%), thyroid abnormalities (45%), premature ovarian failure (89%), cataracts (22%), and psychological problems (44%). However, the quality of life, as self-assessed by the patients, was considered good for 83% of the participants.. CONCLUSIONS: Patients who received TBI had significantly higher EFS and lower PR. However, adverse effects are frequent and significant, although they do not subjectively affect quality of life.

Healthcare perceptions of persons with traumatic brain injuries across providers: shortcomings in the chronic phase of care.

OBJECTIVE: This investigation sought to examine the perceptions of individuals with mild, moderate, and severe traumatic brain injury (TBIs) toward healthcare providers across rehabilitation contexts (acute, rehabilitation, and chronic). METHODS: The mCARE-TBI survey was distributed via Qualtrics throughout the US and Canada. Sixty-four survey responses met criteria for analysis. Participants were ≥18 years old, one-year post onset, reported no unrelated neurological deficits prior to the single TBI, and reported no prior diagnosed psychiatric disorders. The mCARE was the primary outcome measure. Comparisons were made between provider ratings on each question. RESULTS: Significant differences were found between chronic-phase care, compared to acute care and rehabilitation. Group differences were found in transitioning home after discharge and in between each therapy discipline and both nurses and doctors, as well as for really listening and pairwise differences between therapy disciplines and both nurses and doctors. Group effects were found for showing compassion and care and being positive. CONCLUSIONS: All disciplines need to improve communication, and transition care/discharge planning. Dismissal of ongoing impairments continues to be an area of perceived concern with doctors in particular. Communication training is needed, particularly for nurses and doctors.

Effectiveness of Telemedicine for Musculoskeletal Disorders: Umbrella Review.

BACKGROUND: Several systematic reviews (SRs) assessing the use of telemedicine for musculoskeletal conditions have been published in recent years. However, the landscape of evidence on multiple clinical outcomes remains unclear. OBJECTIVE: We aimed to summarize the available evidence from SRs on telemedicine for musculoskeletal disorders. METHODS: We conducted an umbrella review of SRs with and without meta-analysis by searching PubMed and EMBASE up to July 25, 2022, for SRs of randomized controlled trials assessing telemedicine. We collected any kind of patient-reported outcome measures (PROMs), patient-reported experience measures (PREMs), and objective measures, including direct and indirect costs. We assessed the methodological quality with the AMSTAR 2 tool (A Measurement Tool to Assess systematic Reviews 2). Findings were reported qualitatively. RESULTS: Overall, 35 SRs published between 2015 and 2022 were included. Most reviews (n=24, 69%) were rated as critically low quality by AMSTAR 2. The majority of reviews assessed "telerehabilitation" (n=29) in patients with osteoarthritis (n=13) using PROMs (n=142 outcomes mapped with n=60 meta-analyses). A substantive body of evidence from meta-analyses found telemedicine to be beneficial or equal in terms of PROMs compared to conventional care (n=57 meta-analyses). Meta-analyses showed no differences between groups in PREMs (n=4), while objectives measures (ie, "physical function") were mainly in favor of telemedicine or showed no difference (9/13). All SRs showed notably lower costs for telemedicine compared to in-person visits. CONCLUSIONS: Telemedicine can provide more accessible health care with noninferior results for various clinical outcomes in comparison with conventional care. The assessment of telemedicine is largely represented by PROMs, with some gaps for PREMs, objective measures, and costs. TRIAL REGISTRATION: PROSPERO CRD42022347366; https://osf.io/pxedm/.

Utility and Utilization of Patient-Reported Experience Measures for the Supplementary COVID-19 Protective Actions at the Ovidius Clinical Hospital in Romania.

Patient-reported experience measures (PREMs) provide assessments of patients' subjective experiences and perceptions regarding their interactions with the healthcare system and its services. We present a cross-sectional study of the patient perception and evolution of COVID-19 cases performed at Ovidius Clinical Hospital in Romania during the COVID-19 pandemic. The study objective is to explore the utility and the utilization of PREMs in monitoring patient perceptions of the supplementary protective actions. During the pandemic, the hospital implemented early supplementary protective actions, like PCR and lung CT, to all surgically admitted patients in the hospital alongside government-recommended actions. At the same time, functional PREMs were used to evaluate patient perceptions regarding these supplementary actions. The research was carried out for 19 months between June 2020 and December 2021. The findings revealed that opinions about the severity of the COVID-19 pandemic, the personal risk of infection, and the perception of protective actions in the hospital were not correlated. Conclusions: The patients' appreciation of the COVID-19 protective actions taken by the hospital is related more to the general perceptions induced by the number of cases presented in the mass media and less by perceptions of the gravity of the problem or the risk of infection. In a hospital, the primary mission of patient safety is essential, and it must be fulfilled even if the patients are not sure or fully convinced that this is for their benefit. For management decisions and monitoring, using PREMs can be essential in a situation when general evidence is not conclusive.

Case-mix adjustments for patient reported experience and outcome measures in primary care: an empirical approach to identify patient characteristics as case-mix adjusters based on a secondary analysis of an international survey among patients and their general practitioners in 34 countries.

BACKGROUND: Case-mix adjustment of patient reported experiences (PREMs) and outcomes (PROMs) of care are meant to enable fair comparison between units (e.g. care providers or countries) and to show where improvement is possible. It is important to distinguish between fair comparison and improvement potential, as case-mix adjustment may mask improvement potential. Case-mix adjustment takes into account the effect of patient characteristics that are related to the PREMs and PROMs studied, but are outside the sphere of influence of the units being compared. We developed an approach to assess which patient characteristics would qualify as case-mix adjusters, using data from an international primary care study. RESULTS: We used multilevel analysis, with patients nested in general practices nested in countries. Case-mix adjustment is indicated under the following conditions: there is a main effect of the potential case-mix adjuster on the PREM/PROM; this effect does not vary between units; and the distribution of the potential case-mix adjuster differs between units. Random slope models were used to assess whether the impact of a potential case-mix adjuster varied between units. To assess whether a slope variance is big enough to decide that case-mix adjustment is not indicated, we compared the variances in the categories of a potential case-mix adjuster. Significance of the slope variance is not enough, because small variances may be significantly different from zero when numbers are large. We therefore need an additional criterion to consider a slope variance as important. Borrowing from the idea of a minimum clinically important difference (MCID) we proposed a difference between the variances of 0.25*variance (equivalent to a medium effect size). We applied this approach to data from the QUALICOPC (Quality and costs of primary care in Europe) study. CONCLUSIONS: Our approach provides guidance to decide whether or not patient characteristics should be considered as case-mix adjusters. The criterion of a difference between variances of 0.25*variance works well for continuous PREMs and PROMs, but seems to be too strict for binary PREMs and PROMs. Without additional information, it is not possible to decide whether important slope variation is the result of either differences in performance between general practices or countries, or cultural differences.

[Encuesta Internacional de Indicadores de Salud Referidos por los Pacientes: el protocolo del Estudio PaRIS en España.] / International Patient-Reported Indicators Surveys: The PaRIS study protocol in Spain.

OBJECTIVE: The PaRIS Survey is an initiative led by the Organization for Economic Cooperation and Development in twenty-one countries, including Spain, to promote people-centred health care. The objective of the study aimed to describe PROMS and PREMS (Patient Reported Outcomes and Experience Measures, respectively) from patients who were in contact with Primary Care Centres, in order to establish a set of reliable, valid and internationally comparable indicators. METHODS: A cross-sectional study with two questionnaires will be carried out: one applied online for professionals from Primary Care Centres and another by telephone or online for patients aged forty-five and older of the same Health Care Centres. The domains covered are: characteristics of the Health Centre and of the professionals; sociodemographic characteristics of the patients; lifestyles; health care capacities; PROMs and PREMs. CONCLUSIONS: The study offers a unique opportunity to evaluate the health outcomes and experiences of the care received in Primary Care from patient's perspective. This information is essential to help policymakers better understand the performance of their health system and how it could be improved, particularly in relation to chronic care in Primary Care.

OBJETIVO: La Encuesta de Indicadores Referidos por los Pacientes (PaRIS, por sus siglas en inglés) es una iniciativa liderada por la Organización para la Cooperación y el Desarrollo Económicos en veintiún países, incluyendo España, para promover una atención sanitaria centrada en las personas. El objetivo del estudio fue describir los resultados en salud y las experiencias referidas por los pacientes (PROMs y PREMs, por sus siglas en inglés Patient Reported Outcomes and Experience Measures, respectivamente) que tuvieron contacto con los Centros de Atención Primaria (CAP), con la finalidad de establecer un conjunto de indicadores confiables, válidos e internacionalmente comparables. METODOS: Se realizará un estudio transversal, con dos cuestionarios: online para profesionales de los Centros de Atención Primaria y telefónico u online para los pacientes de cuarenta y cinco años y más, que acudieron a los CAP. Los dominios abarcados son: características del Centro de Atención Primaria y de los profesionales; características sociodemográficas de los pacientes; estilos de vida; capacidades; PROMs y PREMs. CONCLUSIONES: PaRIS ofrece una oportunidad para medir resultados de salud y las experiencias en Atención Primaria desde la perspectiva del paciente. Esta información es fundamental para ayudar a los gestores a comprender mejor el desempeño del sistema de salud y detectar posibilidades de mejora, particularmente en relación con la atención crónica.

Performance measurement and user-centeredness in the healthcare sector: Opening the black box adapting the framework of Donabedian.

The framework of Donabedian is widely applied to performance assessment at the healthcare system level. Donabedian categorised the care quality measurement around three dimensions, namely structure, process, and outcomes. The first dimension concerns the inputs; the second one, the combinations of factors and inputs; the last one, the effectiveness in terms of patients' health status. Donabedian early included in the last dimension the patient satisfaction. Nevertheless, nowadays, outcomes are generally measured through hard endpoints, such as re-admissions and mortality indicators. Recently, the Patient-Reported Outcome Measures (PROMs) have been included among the outcome measures within the Donabedian framework. How to move the concept of patient-centeredness to a macro level, including the patient point of view in care quality measurement, evaluation, and improvement? This paper integrates the Donabedian structure-process-outcome framework, by incorporating in the proper dimension the patient-indicators, namely the abovementioned PROMs and Patient-Reported Experience Measures (PREMs). While PROMs are clearly measures of outcome, PREMs can be collocated in the process dimension, since they can be useful for mapping processes and care pathways, in a lean perspective, as well as in the outcome dimension, because inherently linked to outcome, and enablers of patient-centeredness.

How much convergence exists between registered process measures and patient reported experience measures? A study on Catalan primary healthcare.

The use of quality measures is important for transparency and the continuous improvement of performance. However, we do not know enough about the relationship between registered process measures and patient reported experience measures (PREMs) in primary healthcare. Recent studies point to areas of convergence that run contrary anticipated trends. This is a relevant question for healthcare management and governments as their position is stronger when system's guidelines and targets also matter to patients or, vice versa, when patient-centered measures are used to develop new process measures. Our aim is to study both type of measures, their logic and their level of convergence. We also assess the relationship between PREMs, patients' demographic characteristics and area socioeconomic level. We estimated pairwise correlations with patient experience aggregated at the health-center level and a series of multilevel regression models to assess the adjusted effect of four registered process measures on ratings of patient experience at the patient level. We use patient experience as measured by survey data, two composite quality indices and two single indicators regularly computed by the Catalan Health Service. Continuity of care with the same doctor and accessibility are positively associated with patient experience. No relationship was observed in the index created to measure quality of assistance. The index measuring the quality of prescriptions was positively associated with patient experience but only when analyzed separately. We conclude that registered process measures and PREMs are not entirely independent, hence improvements of the management side have the potential to impact patient experience.

Unlocking the Power of Benchmarking: Real-World-Time Data Analysis for Enhanced Sarcoma Patient Outcomes.

Benchmarking is crucial for healthcare providers to enhance quality and efficiency, notably for complex conditions like sarcomas. Multidisciplinary teams/sarcoma boards (MDT/SBs) are vital in sarcoma management, but differences in their processes can affect patient outcomes and treatment costs, despite adherence to international guidelines. To address this issue, this study aimed to compare two MDT/SBs and establish an interoperable digital platform, Sarconnector®, for real-time-world data assessment and automated analysis. The study included 983 patients, 46.0% of whom female, with a median age of 58 years, and 4.5% of patients presented with metastasis at diagnosis. Differences were observed in the number of first-time presentations, follow-up presentations, primary sarcomas, biopsies and chemotherapy indications between the two MDT/SB. The results highlight the importance of benchmarking and utilizing a harmonized data approach, such as the RWT approach provided by the Sarconnector®, to standardize and evaluate quality and cost metrics. By identifying areas of improvement and making data-driven decisions on the meta-level, healthcare providers can optimize resources and improve patient outcomes. In conclusion, benchmarking with the RWT harmonized data approach provided by the Sarconnector® can help healthcare providers improve the overall effectiveness of the healthcare system and achieve better outcomes for their patients in terms of both outcomes and costs.

Encuesta Internacional de Indicadores de Salud Referidos por los Pacientes: el protocolo del Estudio PaRIS en España / International Patient-Reported Indicators Surveys: The PaRIS study protocol in Spain

Fundamentos: La Encuesta de Indicadores Referidos por los Pacientes (PaRIS, por sus siglas en inglés) es una iniciativa liderada por la Organización para la Cooperación y el Desarrollo Económicos en veintiún países, incluyendo España, para promover una atención sanitaria centrada en las personas. El objetivo del estudio fue describir los resultados en salud y las experiencias referidas porlos pacientes (PROMs y PREMs, por sus siglas en inglésPatient Reported Outcomes and Experience Measures, respectivamente) quetuvieron contacto con los Centros de Atención Primaria (CAP), con la finalidad de establecer un conjunto de indicadores confiables,válidos e internacionalmente comparables. Métodos: Se realizará un estudio transversal, con dos cuestionarios: online para profesionales de los Centros de Atención Primaria y telefónico u online para los pacientes de cuarenta y cinco años y más, que acudieron a los CAP. Los dominios abarcados son: características del Centro de Atención Primaria y de los profesionales; características sociodemográficas de los pacientes; estilos devida; capacidades; PROMs y PREMs. Conclusiones: PaRIS ofrece una oportunidad para medir resultados de salud y las experiencias en Atención Primaria desde laperspectiva del paciente. Esta información es fundamental para ayudar a los gestores a comprender mejor el desempeño del sistemade salud y detectar posibilidades de mejora, particularmente en relación con la atención crónica.(AU)

Background: The PaRIS Survey is an initiative led by the Organization for Economic Cooperation and Development in twenty-onecountries, including Spain, to promote people-centred health care. The objective of the study aimed to describe PROMS and PREMS(Patient Reported Outcomes and Experience Measures, respectively) from patients who were in contact with Primary Care Centres, inorder to establish a set of reliable, valid and internationally comparable indicators. Methods: A cross-sectional study with two questionnaires will be carried out: one applied online for professionals from Primary CareCentres and another by telephone or online for patients aged forty-five and older of the same Health Care Centres. The domains coveredare: characteristics of the Health Centre and of the professionals; sociodemographic characteristics of the patients; lifestyles; health carecapacities; PROMs and PREMs. Conclusions: The study offers a unique opportunity to evaluate the health outcomes and experiences of the care received inPrimary Care from patient’s perspective. This information is essential to help policymakers better understand the performance oftheir health system and how it could be improved, particularly in relation to chronic care in Primary Care.(AU)

Surgical outcomes and patient-centred perioperative programs.

Perioperative medicine is changing, and its goals are expanding. More and more attention is paid to the surgical experience and the patient's quality of life. Patient-reported data represent a useful tool in this context. Patient-reported outcomes measures (PROMs) and experience measures (PREMs) are among the most used categories. However, creating perioperative programs capable of integrating traditional perioperative data with these scales is not easy. New technologies, particularly artificial intelligence, thanks to their ability to recognise, interpret, process or simulate human feelings, emotions and moods, could provide the necessary tools to combine all perioperative aspects, placing the patients and their needs at the centre of the process.

Uptake of pediatric patient-reported outcome and experience measures and challenges associated with their implementation in Alberta: a mixed-methods study.

BACKGROUND: Implementing Patient-reported Outcome Measures (PROMs) and Patient-reported Experience Measures (PREMs) is an effective way to deliver patient- and family-centered care (PFCC). Although Alberta Health Services (AHS) is Canada's largest and fully integrated health system, PROMs and PREMs are yet to be routinely integrated into the pediatric healthcare system. This study addresses this gap by investigating the current uptake, barriers, and enablers for integrating PROMs and PREMs in Alberta's pediatric healthcare system. METHODS: Pediatric clinicians and academic researchers with experience using PROMs and PREMs were invited to complete a quantitative survey. Additionally, key stakeholders were qualitatively interviewed to understand current challenges in implementing pediatric PROMs and PREMs within AHS. Quantitative data gathered from 22 participants were descriptively analyzed, and qualitative data from 14 participants were thematically analyzed. RESULTS: Participants identified 33 PROMs and 6 PREMs showing diversity in the types of pediatric PROMs and PREMs currently being used in Alberta and their mode of administration. The qualitatively identified challenges were associated with patients, family caregivers, and clinicians. The absence of system-level support, such as integration within electronic medical records, is considered a significant system-level challenge. CONCLUSIONS: The significant variation in the types of PROMs and PREMs used, the rationale for their use, and their mode of administration demonstrate the diverse and sporadic use of these measures in Alberta. These findings highlight the need for province-wide uniform implementation of pediatric PROMs and PREMs in Alberta. Our results could benefit healthcare organizations in developing evidence-based PROM and PREM implementation strategies in pediatrics.

Patient-reported outcomes in vasculitis.

Systemic vasculitis encompasses a group of multisystem disorders; both the diseases and the treatment strategies can have a significant impact on a patient's health-related quality of life (HRQoL). Using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) to evaluate the patient's view of their condition, treatments, and healthcare journey is essential to the patient-centered care approach. In this paper, we discuss the use of generic, disease-specific, and treatment-specific PROMs and PREMs in systemic vasculitis and future research goals.

Measuring Experience of Inpatient Child and Adolescent Mental Health Services (CAMHS).

There has been an important drive towards embedding feedback and experience data to improve health services in the UK. The current paper examines the gap in evidence and the lack of adequate measures of inpatient CAMHS experience. It presents the context of inpatient CAMHS and what factors influence care experience, before exploring the current practices for measuring experience and the implications for young people and families. The paper explores the dialectic that-given the nature of the work balancing risk and restrictions in inpatient CAMHS-it is essential that patient voice is at the centre of quality measures, and achieving this comes with a great complexity. The health needs of adolescents are unique, as are the interventions of psychiatric inpatient care, but current measures in routine use are often not developmentally adapted and lack validity. This paper looks to interdisciplinary theory and practice to consider what the application of a valid and meaningful measure of inpatient CAMHS experience might incorporate. It makes the case that the development of a measure of relational and moral experience of inpatient CAMHS would have significant implications for the quality of care and safety of adolescents during a period of acute crisis.

Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients.

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15-29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.