Presencia de buenas prácticas de humanización en la atención a los pacientes con enfermedades raras en los servicios de farmacia / Presence of good humanization practices in the healthcare of patients with rare diseases in Pharmacy Services

Objetivo analizar la presencia de buenas prácticas de humanización en la atención a los pacientes con enfermedades raras en los servicios de farmacia hospitalaria para identificar las fortalezas y las áreas prevalentes de mejora para una atención más humanizada. Métodos se elaboró un cuestionario online empleando Google Form® estructurado en 2 partes: la primera recogía datos identificativos y la segunda incluía las preguntas relacionadas con el cumplimiento de los 61 estándares del Manual de buenas prácticas de humanización en la atención a pacientes con enfermedades raras en los servicios de farmacia hospitalaria. El acceso al cuestionario se envió por correo electrónico a los jefes de servicio de farmacia hospitalaria de 18 hospitales. El periodo de estudio fue de octubre 2021 a octubre 2022. Las variables analizadas fueron el número de criterios cumplidos, el cumplimiento total (porcentaje de criterios cumplidos) tanto por línea estratégica como por tipo o nivel de estándar (básico, básico de obligado cumplimiento, avanzado o excelente), de forma global y agrupados por comunidades autónomas. Resultados el estudio incluyó 18 servicios de farmacia hospitalaria. La media global de estándares cumplidos fue de 31,1 (IC 95%: 24,8–37,6) y el cumplimiento total medio del 52,1% (IC 95%: 44,4–59,7). La línea 1, Cultura de humanización, tuvo un cumplimiento medio del 46,5% (IC 95%: 35,3–57,7), la línea 2, Empoderamiento del paciente, del 47,4% (IC 95%: 37,1–57,8), la línea 3, Cuidado del profesional, del 49,7% (IC 95%: 39,8–59,1), la línea 4, Espacios físicos y confort del 55,6% (IC 95%: 46,3–64,8) y la línea 5, Organización de la atención, del 63,8% (IC 95%: 55,8–71,9). Conclusión el cumplimiento medio de los estándares está entre 40 y 60%, lo que indica que la humanización está presente en los servicios de farmacia hospitalaria, pero existe un amplio margen de mejora (AU)

Objective To analyze the presence of Good Humanization Practices in the care of patients with rare diseases in Hospital Pharmacy Services and to identify the strengths and prevalent areas for improvement in the humanization of healthcare. Methods Online questionnaire structured in two parts was developed using Google Form®. The first one was designed to collect identifying data and the second one included questions related to compliance with the 61 standards of the Manual of Good Humanization Practices in the healthcare of patients with rare diseases in Hospital Pharmacy Services. Access to the questionnaire was sent by email to the Heads of the Hospital Pharmacy Service of 18 hospitals. The study period was from October 2021 to October 2022. The analyzed variables were the number of criteria that were considered met, total compliance (percentage of criteria met), by strategic line and by type or level of standard, globally and grouped by regions of Spain. Results 18 Hospital Pharmacy Services were included. The overall mean of standards met was 31.1 (95% CI: 24.8–37.6) and mean total compliance was 52.1% (95% CI: 44.4–59.7). The mean compliance by strategic line was line 1 Humanization culture: 46.5% (95% CI: 35.3–57.7), line 2 Patient empowerment: 47.4% (95% CI: 37.1– 57.8), line 3 Professional care: 49.7% (95% CI: 39.8–59.1), line 4 Physical spaces and comfort: 55.6% (95% CI: 46.3–64.8) and line 5 Organization of healthcare: 63.8% (95% CI: 55.8–71.9). Conclusion The average compliance with the standards is between 40 and 60%, which indicates that humanization is present in the Hospital Pharmacy Services, but there is a wide margin for improvement. The main strength in the humanization of Hospital Pharmacy Services is a patient-centered care organization, and the area with the greatest room for improvement is the culture of humanization (AU)

Presence of good humanization practices in the healthcare of patients with rare diseases in Pharmacy Services. / Presencia de buenas prácticas de humanización en la atención a los pacientes con enfermedades raras en los servicios de farmacia.

OBJECTIVE: To analyze the presence of Good Humanization Practices in the care of patients with rare diseases in Hospital Pharmacy Services and to identify the strengths and prevalent areas for improvement in the humanization of healthcare. METHODS: Online questionnaire structured in two parts was developed using Google Form®. The first one was designed to collect identifying data and the second one included questions related to compliance with the 61 standards of the Manual of Good Humanization Practices in the healthcare of patients with rare diseases in Hospital Pharmacy Services. Access to the questionnaire was sent by email to the Heads of the Hospital Pharmacy Service of 18 hospitals. The study period was from October 2021 to October 2022. The analyzed variables were the number of criteria that were considered met, total compliance (percentage of criteria met), by strategic line and by type or level of standard, globally and grouped by regions of Spain. RESULTS: 18 Hospital Pharmacy Services were included. The overall mean of standards met was 31.1 (95% CI: 24.8-37.6) and mean total compliance was 52.1% (95% CI: 44.4-59.7). The mean compliance by strategic line was line 1 Humanization culture: 46.5% (95% CI: 35.3-57.7), line 2 Patient empowerment: 47.4% (95% CI: 37.1- 57.8), line 3 Professional care: 49.7% (95% CI: 39.8-59.1), line 4 Physical spaces and comfort: 55.6% (95% CI: 46.3-64.8) and line 5 Organization of healthcare: 63.8% (95% CI: 55.8-71.9). CONCLUSION: The average compliance with the standards is between 40 and 60%, which indicates that humanization is present in the Hospital Pharmacy Services, but there is a wide margin for improvement. The main strength in the humanization of Hospital Pharmacy Services is a patient-centered care organization, and the area with the greatest room for improvement is the culture of humanization.

[Translated article] Good humanisation practices in the healthcare of patients with rare diseases in Pharmacy Services.

OBJECTIVE: To analyse the presence of Good Humanisation Practices in the care of patients with rare diseases in Hospital Pharmacy Services and to identify the strengths and prevalent areas for improvement in the humanisation of healthcare. METHODS: An online questionnaire structured in 2 parts was developed using Google Form®. The first one was designed to collect identifying data and the second one included questions related to compliance with the 61 standards of the Manual of Good Humanisation Practices in the healthcare of patients with rare diseases in Hospital Pharmacy Services. Access to the questionnaire was sent by email to the Heads of the Hospital Pharmacy Service of 18 hospitals. The study period was from October 2021 to October 2022. The analysed variables were the number of criteria that were considered met, total compliance (percentage of criteria met), by strategic line and by type or level of standard, globally and grouped by regions of Spain. RESULTS: 18 Hospital Pharmacy Services were included. The overall mean of standards met was 31.1 (95% CI: 24.8-37.6) and mean total compliance was 52.1% (95% CI: 44.4%-59.7%). The mean compliance by strategic line was: Line 1, Humanisation culture: 46.5% (95% CI: 35.3%-57.7%), Line 2, Patient empowerment: 47.4% (95% CI: 37.1%-57.8%), Line 3, Professional care: 49.7% (95% CI: 39.8%-59.1%), Line 4, Physical spaces and comfort: 55.6% (95% CI: 46.3%-64.8%), and Line 5, Organisation of healthcare: 63.8% (95% CI: 55.8%-71.9%). CONCLUSION: The average compliance with the standards is between 40% and 60%, which indicates that humanisation is present in the Hospital Pharmacy Services, but there is a wide margin for improvement. The main strength in the humanisation of Hospital Pharmacy Services is a patient-centred care organisation, and the area with the greatest room for improvement is the culture of humanisation.

When attitudes and beliefs get in the way of shared decision-making: A mediation analysis of participation preference.

INTRODUCTION: Certain sociodemographic characteristics (e.g., older age) have previously been identified as barriers to patients' participation preference in shared decision-making (SDM). We aim to demonstrate that this relationship is mediated by the perceived power imbalance that manifests itself in patients' negative attitudes and beliefs about their role in decision-making. METHODS: We recruited a large sample (N = 434) of outpatients with a range of urological diagnoses (42.2% urooncological). Before the medical consultation at a university hospital, patients completed the Patients' Attitudes and Beliefs Scale and the Autonomy Preference Index. We evaluated attitudes as a mediator between sociodemographic factors and participation preference in a path model. RESULTS: We replicated associations between relevant sociodemographic factors and participation preference. Importantly, attitudes and beliefs about one's own role as a patient mediated this relationship. The mediation path model explained a substantial proportion of the variance in participation preference (27.8%). Participation preferences and attitudes did not differ for oncological and nononcological patients. CONCLUSION: Patients' attitudes and beliefs about their role determine whether they are willing to participate in medical decision-making. Thus, inviting patients to participate in SDM should encompass an assessment of their attitudes and beliefs. Importantly, negative attitudes may be accessible to change. Unlike stable sociodemographic characteristics, such values are promising targets for interventions to foster more active participation in SDM. PATIENT OR PUBLIC CONTRIBUTION: This study was part of a larger project on implementing SDM in urological practice. Several stakeholders were involved in the design, planning and conduction of this study, for example, three authors are practising urologists, and three are psychologists with experience in patient care. In addition, the survey was piloted with patients, and their feedback was integrated into the questionnaire. The data presented in this study is based on patients' responses. Results may help to empower our patients.

Iron-Based Magnetic Nanosystems for Diagnostic Imaging and Drug Delivery: Towards Transformative Biomedical Applications.

The advancement of biomedicine in a socioeconomically sustainable manner while achieving efficient patient-care is imperative to the health and well-being of society. Magnetic systems consisting of iron based nanosized components have gained prominence among researchers in a multitude of biomedical applications. This review focuses on recent trends in the areas of diagnostic imaging and drug delivery that have benefited from iron-incorporated nanosystems, especially in cancer treatment, diagnosis and wound care applications. Discussion on imaging will emphasise on developments in MRI technology and hyperthermia based diagnosis, while advanced material synthesis and targeted, triggered transport will be the focus for drug delivery. Insights onto the challenges in transforming these technologies into day-to-day applications will also be explored with perceptions onto potential for patient-centred healthcare.

Capturing the experience of the hospital-stay journey from admission to discharge using diaries completed by patients in their own words: a qualitative study.

OBJECTIVE: To capture and better understand patients' experience during their healthcare journey from hospital admission to discharge, and to identify patient suggestions for improvement. DESIGN: Prospective, exploratory, qualitative study. Patients were asked to complete an unstructured written diary expressed in their own words, recording negative and positive experiences or anything else they considered noteworthy. PARTICIPANTS AND SETTING: Patients undergoing vascular surgery in a metropolitan hospital. PRIMARY OUTCOME MEASURES: Complete diary transcripts underwent a general inductive thematic analysis, and opportunities to improve the experience of care were identified and collated. RESULTS: We recruited 113 patients in order to collect 80 completed diaries from 78 participants (a participant response rate of 69%), recording patients' experiences of their hospital-stay journey. Participating patients were a median (range) age of 69 (21-99) years and diaries contained a median (range) of 197 (26-1672) words each. Study participants with a tertiary education wrote more in their diaries than those without-a median (range) of 353.5 (48-1672) vs 163 (26-1599) words, respectively (Mann-Whitney U test, p=0.001). Three primary and eight secondary themes emerged from analysis of diary transcripts-primary themes being: (1) communication as central to care; (2) importance of feeling cared for and (3) environmental factors shaping experiences. In the great majority, participants reported positive experiences on the hospital ward. However, a set of 12 patient suggestions for improvement were identified, the majority of which could be addressed with little cost but result in substantial improvements in patient experience. Half of the 12 suggestions for improvement fell into primary theme 1, concerning opportunities to improve communication between healthcare providers and patients. CONCLUSIONS: Unstructured diaries completed in a patient's own words appear to be an effective and simple approach to capture the hospital-stay experience from the patient's own perspective, and to identify opportunities for improvement.

Women's experiences of induction of labour: Qualitative systematic review and thematic synthesis.

OBJECTIVES: To explore and synthesise evidence of women's experiences of induction of labour (IoL). DESIGN: Systematic review and thematic synthesis of peer-reviewed qualitative evidence. Relevant databases were searched from inception to the present day. Study quality was appraised using the Critical Appraisal Skills Programme (CASP) qualitative research appraisal tool. SETTING AND PARTICIPANTS: Low and high risk women who had experienced IoL in an inpatient or outpatient setting. FINDINGS: Eleven papers (representing 10 original studies) published between 2010 and 2018 were included for thematic synthesis. Four key analytical themes were identified: ways in which decisions regarding induction were made; women's ownership of the process; women's social needs when undergoing IoL; and the importance of place in the induction process. The review indicates that IoL is a challenging experience for women, which can be understood in terms of the gap between women's needs and the reality of their experience concerning information and decision-making, support, and environment. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Providing good quality appropriately timed information and supporting women's self-efficacy to be involved in decision-making around IoL may benefit women by facilitating a sense of ownership or control of labour. Compassionate support from significant others and healthcare professionals in a comfortable, private and safe environment should be available to all women.

Digital displacements in patient-professional relations.

Purpose The purpose of this paper is to examine the relational consequences of electronic patient records based on co-produced data from pregnant women's IT supported self-reporting. The analysis unfolds how the clinical encounter between patient and professional is reconfigured in the digitized society. Design/methodology/approach The paper provides a grounded theory analysis based on observations and interviews in an antenatal care unit. The study draws on empirical material generated through observations of the clinical encounters between pregnant women and midwifes, interviews with managers and midwifes, field notes and policy documents. Findings The author argues that the use of technology and co-produced data displace tasks and relations between healthcare professional and patient. The analysis shows that four modes of organizational patient involvement are enacted: involvement in administrative tasks, involvement in professional resistance, individualized involvement, and homogenized involvement of patients that tends to categorize the pregnancy roughly as either "normal" or "abnormal." Originality/value This study contributes to qualitative research in digitization and patient involvement in health organization studies by showing how digital technology distributes the midwife's autonomy, tasks and knowledge about the patient with both intended and unintended consequences. The argument goes beyond the prevalent prescriptive approaches to e-government and co-production, instead providing a critical analytical perspective on the promises of delivering efficient and patient-centered healthcare.

Development and field testing of a consumer shared decision-making training program for adults with low literacy.

OBJECTIVE: Given the scarcity of shared decision-making (SDM) interventions for adults with low literacy, we created a SDM training program tailored to this population to be delivered in adult education settings. METHODS: Formative evaluation during program development included a review of the problem and previous efforts to address it, qualitative interviews with the target population, program planning and field testing. RESULTS: A comprehensive SDM training program was developed incorporating core SDM elements. The program aimed to improve students' understanding of SDM and to provide them with the necessary skills (understanding probabilistic risks and benefits, personal values and preferences) and self-efficacy to use an existing set of questions (the AskShareKnow questions) as a means to engage in SDM during healthcare interactions. CONCLUSIONS: There is an ethical imperative to develop SDM interventions for adults with lower literacy. Generic training programs delivered direct-to-consumers in adult education settings offer promise in a national and international environment where too few initiatives exist. PRACTICE IMPLICATIONS: Formative evaluation of the program offers practical insights into developing consumer-focused SDM training. The content of the program can be used as a guide for future efforts to engage consumers in SDM.

Patient-centred standardization in interstitial cystitis/bladder pain syndrome-a PLEA.

Standardization has an impact on all links in the healthcare chain and directly affects patients with regard to diagnosis, treatment, eligibility for reimbursement, social benefits and care. Furthermore, patients are also affected if research goes down inappropriate pathways due to inaccurate terminology and definitions. Complex healthcare coding and electronic medical record systems and global reliance on the internet and search machines mean that new terminology or changes now need in some way to be designed to last or to be updated in a way that will cause least disruption, while still allowing for evolution, since changes have far more ramifications today than they ever did in the past. Official recognition of a condition is vital, so coding must be correct and uniform across all authorities. Potential problems must be anticipated at an early stage in the process. In order to achieve global consensus, stakeholders from all parts of the world need to communicate and collaborate with all viewpoints taken into consideration. Patients and their advocacy groups should be involved in standardization processes to ensure that all aspects of a condition are covered, that no patients or symptoms are excluded and that there is no adverse impact on the patient in practical terms following implementation. The trend today is for patients to be more involved in healthcare and decision-making. We must ensure that standardisation and guidelines do not get left behind in this process of development either now or in the future. However, it is necessary to find some way of training patient representatives to enable them to participate fully in standardization and guidelines and also to encourage them to do so.

A prospective observational study on tolerance and satisfaction to hepatic haemodynamic procedures.

BACKGROUND: Understanding patients' attitudes to clinical experiences is essential for developing high-quality patient-centred healthcare, as a better knowledge of patients' tolerance and satisfaction might allow implementing measures that ameliorate comfort, care and use of resources. AIMS: We aimed to describe patients' tolerance and satisfaction to invasive hepatic haemodynamic procedures, and to investigate which factors might influence patients' perspective in this field. METHODS: Visual Analogue Scale (VAS) questionnaires regarding pain and duration (for tolerance), and comfort and general handling (for satisfaction) were prospectively administered to all consecutive patients (N = 327) submitted to hepatic haemodynamic procedures (N = 355) in a tertiary care setting during 2011. VAS scores ranged between 0 and 100 mm and items were defined as excellent if <10 mm; good if 10-20 mm and inadequate if >20 mm. Clinical and laboratory data were also collected. RESULTS: Satisfaction was excellent in >95% of cases (mean 2 ± 5 mm, median 0 mm) and average tolerance was good (15 ± 18 mm; median 6 mm). A percentage of 59% of patients had excellent tolerance, 9% good and 32% had inadequate tolerance. Duration and complexity of the procedure and limited operator's experience were associated with inadequate tolerance on univariate analysis; duration of the procedure remained the only independent factor associated with inadequate tolerance on multivariate analysis. Procedures lasting <35 min had a >80% probability of being well tolerated. CONCLUSIONS: Satisfaction and tolerance to hepatic haemodynamic procedures are excellent and good respectively. Tolerance was decreased in long procedures; hence reducing as much as possible the duration of the procedures might further improve tolerance.

Practising cloud-based telemedicine in developing countries.

In industrialised countries, telemedicine has proven to be a valuable tool for enabling access to knowledge and allowing information exchange, and showing that it is possible to provide good quality of healthcare to isolated communities. However, there are many barriers to the widespread implementation of telemedicine in rural areas of developing countries. These include deficient internet connectivity and sophisticated peripheral medical devices. Furthermore, developing countries have very high patients-per-doctor ratios. In this paper, we report our work on developing a cloud-based health information system, which promotes telemedicine and patient-centred healthcare by exploiting modern information and communication technologies such as OWL-ontologies and SQL-triggers. The reason for using cloud technology is twofold. First, cloud service models are easily adaptable for sharing patients health information, which is of prime importance in patient-centred healthcare as well as in telemedicine. Second, the cloud and the consulting physicians may locate anywhere in the internet.