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Samooskrba pacientov vključuje aktivno skrb za samega sebe v času zdravja in bolezni. Koncept samooskrbe v slovenskem prostoru ni enotno opredeljen in je redko raziskovalna tematika. Narejena je bila analiza koncepta samooskrbe po Walkerju in Avantu za slovenski prostor. Analiza je temeljila na pregledu slovenske strokovne in znanstvene literature. Koncept samooskrbe vključuje aktivno skrb za samega sebe, aktivnosti, usmerjene v doseganje optimalnega zdravja in dobrega počutja, ter kontinuirano izvajanje. Predhodniki samooskrbe so motiviranost in informiranost, zdravstvena pismenost in zdravstvena vzgojenost. Posledice samooskrbe so boljša kakovost življenja in večje zadovoljstvo z življenjem, boljše sprejemanje zdravljenja, manjša obremenitev zdravstva ter boljša kakovost zdravstvene obravnave. Nadaljnje raziskovanje oz. nadgradnja konceptualnega modela samooskrbe bi bila smiselna v smeri oblikovanja specifičnih negovalnih intervencij za spodbujanje samooskrbe med pacienti v raz-ličnih življenjskih obdobjih in pristopov k njihovemu izvajanju. Self-care includes actively caring for oneself in times of health and illness. The concept of self-care is not uniformly defined in Slovenia and is a rare research topic. A concept analysis of selfcare according to Walker and Avant was conducted for the Slovenian context. For this purpose, a review of Slovenian professional and scientific literature was conducted. The concept of self-care includes the following attributes: active self-care, activities to achieve optimal health and well-being, which are carried out continuously. The antecedents of selfcare are motivation and information, health literacy and health education, so that the patient has the necessary knowledge and skills and can implement them independently. The results of self-care are better quality of life and life satisfaction, better acceptance of treatment, reduced burden on healthcare systems and better quality of healthcare services. Further research and upgrading of the conceptual model of self-care would be useful to develop specific nursing interventions to promote self-care in patients at different stages of life and approaches for their implementation.

Objective One crucial prerequisite for increased patient empowerment is the willingness among patients to take a more active role. The aim of this study was to develop questionnaires for measuring a patient’s willingness to be empowered in general and by using e-health. Methods The study was based on a random sample from an online panel. The 800 responders were Swedish citizens and reflected the internet-using population in Sweden regarding age, gender, income, and education. The measurement properties were evaluated according to the Rasch Measurement Theory. Results The analyses showed two questionnaires with adequate fit to the basic measurement model and with high reliability (PSI 0.84 and 0.89, respectively). Conclusion We conclude that this study generated two questionnaires with an intuitive order of items illustrating an understandable progression of willingness to be empowered in general as well as for e-health. Practice implications The suggested questionnaires are valuable tools supporting the effort to tailor empowerment strategies to meet the patient’s willingness. Questionnaires will also be valuable for evaluating strategies for supporting willingness, studying factors related to willingness and potential inequalities due to e.g. varying digital literacy, and for enabling identification of patient stereotypes using cluster analyses. CC BY-NC-ND 4.0Available online 7 July 2021We are deeply grateful to the research environment “Learning in and for the new working life,” University West, Sweden and the research institute RISE Knowledge Platform “Centre for Categorically Based Measures” for sponsoring the costs for using the online panel and services offered by Kantar-Sifo. The study was financed by grants from the Swedish government under the agreement between the Swedish government and the county councils, the ALF agreement ALFGBG-716581.

The subject of this paper is the concept of the expert patient as it is put into practice at The Patients’ University, an educational institution that exists from the academic year 2009/2010 at the University Paris-Sorbonne. The concept of the expert patient emerged in the 70’s and has been gaining ground in the bioethical discussions ever since. Nevertheless, the concept of the expert patient is an open project which is still in the process of definition. The Patients’ University, a project proposed the philosopher and educationalist Catherine Tourette-Turgis, is of particular interest due to its multidimensional use of the concept of the expert patient. First of all, there is the practical side imposed by the changing reality of the medical practice which witnesses a constant growth of patients suffering from chronic diseases, but there is a strongly developed theoretical reflection and political implications of the phenomenon as well. The French University of Patients is therefore a project through which a wide range of possibilities inscribed in the concept of the expert patient can be apprehended. Artykuł poświęcony jest koncepcji pacjenta-eksperta i analizie podstawowych charakterystyk Uniwersytetu Pacjentów, istniejącego od roku akademickiego 2009/2010 na Sorbonie w Paryżu. Koncepcja pacjenta-eksperta jest pojęciem, które pojawia się w dyskusjach bioetycznych od lat 70. XX wieku. Mamy tu jednak do czynienia z projektem otwartym, którego ostateczna definicja wykuwa się na naszych oczach. Projekt Uniwersytetu Pacjentów zaproponowany przez filozofkę i pedagożkę Catherine Tourette-Turgis jest szczególnie ciekawym sposobem wykorzystania pojęcia pacjent-ekspert ze względu na swój wielowymiarowy charakter. Z jednej strony mamy rozwiązania podyktowane wymogami praktycznymi, ale mamy też refleksje teoretyczną oraz implikacje polityczne. Francuski Uniwersytet Pacjentów jest zatem instytucją, która pozwala na pokazanie szerokiej skali możliwości zawartych w koncepcji pacjenta-eksperta.

People manage many aspects of their lives online through digital devices such as smartphones. However, the ability for people to manage their healthcare digitally has not yet been fully realised. Patient portals are secure online links that offer patients convenient and constant access to their personal health records. Evidence has suggested that patient portals can enhance patients' engagement in their own care and support them to manage any long-term conditions. This article describes the introduction of a patient portal at Cambridge University Hospitals NHS Foundation Trust. The article outlines the process of implementation and discusses the lessons learned, which may be of value to other organisations.

There are significant opportunities for services to improve their sustainability and carbon footprint.1 We hereby report a sustainability review of our dermatology department with a focus on human behaviours. The review was initiated by younger persons in the department and staff family members. This review is based on the four principles set out by the Centre for Sustainable Healthcare: prevention, patient empowerment and self-care, lean systems, and low carbon alternatives.1.

The application of safety checklists to healthcare settings to help systematise routines and improve communication between healthcare professionals has proven to be effective in reducing errors, complications, mortality and hospitalisation time. There is a new call to extend the checklist concept to develop safety checklists that can be used by patients to help empower their involvement in safety practices. Only a handful of studies around patient-completed checklists exist, but those that do indicate a positive impact on patient empowerment and involvement in safety-related behaviours. In this article, we present the concept of patient-completed checklists and provide a review of the existing evidence, highlighting important design and implementation considerations, and making recommendations for future research and development.

Background: Smoking is a preventable cause of chronic morbidity. Patient empowerment is a process through which people establish greater control over their health-related decisions and actions. To assess the effect of patient empowerment versus health education on the nicotine dependence score and progress of patients under different stages of smoking cessation. Methods: This was a single-blinded randomized controlled clinical trial that included 76 smokers attending family medicine clinics. Participants were divided into two groups: empowerment and health education groups. Their nicotine-dependence score and smoking cessation stage were identified. All study participants were subjected to five health education sessions with a 3-month follow-up period. Results: The mean nicotine-dependence score decreased significantly in both groups after the intervention. This decrease was slightly higher in the empowerment group; however, the difference was not statistically significant. After the intervention, 16.7% of the health education and 30.0% of the empowerment group transitioned from stage 1 to stages 2–4 of smoking cessation, with the change being statistically significant only in the empowerment group. There was no statistically significant difference in the number of study participants who stopped smoking between the health education and empowerment groups. Conclusion: Both the empowerment model and traditional health education have similar positive effects on decreasing the nicotine-dependence level. There was a significant improvement in the stage of change for patients under the empowerment model, although there was no statistically significant difference between the groups regarding the number of participants who stopped smoking.

Interest in telemedicine has increased exponentially. There is a growing body of published evidence on the use of telemedicine for patients using continuous positive airway pressure. Telemedicine-ready devices can support the transmission on use time, apnea-hypopnea index, and leakage. This approach enables early activation of troubleshooting. Automated, personalized feedback for patients and patient access to their own data provide unprecedented opportunities for integrating comanagement approaches, multiactor interactions, and patient empowerment. Telemedicine is likely cost effective, but requires better evidence. Notwithstanding barriers for implementation that remain, telemedicine has to be embraced, leaving the physician and patient to accept it or not.

Nurses play an important role in the management of chronic diseases. Here, we discuss the components of a novel system aimed at empowering patients living with chronic diseases, such as chronic obstructive pulmonary disease (COPD), in a context of precariousness for patients and health personnel, including nurses. This project aimed to evaluate the impact of nursing consultation and remote monitoring on the quality of life in patients with COPD. Two essential elements were linked to promote patient empowerment, which included a network of relationships among the community, hospital, and academic institutions as well as the promotion, contextualization, and co-management of therapeutic education programs among patients. Our results are applicable to all countries with vulnerable populations.

Patient Support Programs (PSPs) reinforce patients’ care provided by health care professionals with the aim to improve adherence and patient empowerment. PSPs may include interventions such as home-based care, individualized medication counseling, support, training, and home delivery of medicines and/or devices. This study described these services and its impact on patient-reported outcomes and health care savings. We conducted an integrative literature review which was limited to publications from the last 10 years (2009-2019) and focused on diseases that require special support and/or parenteral administration. From 7040 total citations, we identified 64 home-based care services performed worldwide. Among the home-based care services, most were provided by nurses (n = 47/64; 73.4%) and addressed to cancer patients (n = 22/64; 34.4%); 23 out of 64 services (35.9%) incorporated telepharmacy. In general, home-based services and PSPs showed a positive impact on patients’ adherence to medication, patient satisfaction, and health-related quality of life. In addition, 14 (21.9%) services reported economic results, most of which showed that home therapy led to substantial cost savings.

Hypermobility spectrum disorders (HSDs) encompass an array of connective tissue disorders characterized by joint instability and chronic pain. Fatigue and other systemic symptoms that affect daily functioning may occur, as well. Accurate data on incidence and prevalence of HSDs is hampered by lack of awareness of these conditions and the wide heterogeneity of their clinical presentation. Identifying which type of HSD is present is important in guiding appropriate care. In particular, making the diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS) is important, as individuals with hEDS may be at risk for more significant multisystem involvement. Diagnostic criteria for hEDS include measures of joint hypermobility, skin and other connective tissue findings, and lack of evidence of a different type of Ehlers-Danlos syndrome. Beyond accurate diagnosis, HSDs pose many challenges for primary care providers, as ongoing patient education, patient empowerment, and coordination of a multidisciplinary treatment team are integral to proper care. This article describes the incidence and prevalence, pathophysiology, diagnosis, and management of HSDs, including clinical cases exemplifying how joint hypermobility might present within a primary care setting.

Background: Hand hygiene is paramount in preventing the spread of healthcare-associated infections especially during disease epidemics. Compliance rates with hand hygiene policies remain below 50% internationally and may be lower in the outpatient care setting. This study assessed the impact of the patient empowerment model on hand hygiene compliance among healthcare providers. Methods: From October 2016 to May 2017, patients from a large ambulatory oncology centre were prospectively enrolled. Patients were instructed to observe healthcare providers for hand hygiene compliance and to remind healthcare providers where it was not observed during at least three consecutive encounters. Healthcare provider reactions to this intervention were rated by patients. Patients’ hand hygiene knowledge and beliefs were objectively elicited pre and post-study. Results: Thirty patients with a median age of 52 years (range 5–91) completed the study for a total of 190 healthcare provider encounters. When initial hand hygiene was not observed, patients offered a reminder in 71 (37.4%) encounters, did not offer a reminder in 73 (38.4%) encounters and forgot to offer a reminder in 24 (14.2%) encounters. Patients perceived positive or neutral reactions in 76.8% of encounters and negative or surprised reactions in 23.2% of encounters. Healthcare provider compliance improved from 11.6% to 48.9% with intervention. Patient hand hygiene knowledge improved by 16% following the study. Conclusions: Patient-empowered hand hygiene may be a useful adjunct for improving hand hygiene compliance among healthcare providers and improving patient hand hygiene knowledge, although it may confer an emotional burden on patients.

This review will attempt to understand the information needs of people with IBD, with a focus on diet and the role of the Dietitian as an information source, by assessing scientific literature, (journal articles) and grey literature (reports, position statements, guidelines) and any other relevant literature on the matter.

The aim of this scoping review is to synthesize existing knowledge about the barriers and facilitators patients face when they (decide to) engage with a personal electronic health record (PEHR) to generate and manage their core health data.

Background Patient empowerment is associated with improvements in different patient-reported and clinical outcomes. However, despite being widely researched, high quality and theoretically substantiated disease-generic measures of patient empowerment are lacking. The few good instruments that are available have not reported important psychometric properties, including measurement invariance. The aim of this study was to assess the psychometric properties of the 15-item Gothenburg Empowerment Scale (GES), with a particular focus on measurement invariance of the GES across individuals from three countries. Methods Adults with congenital heart disease from Belgium, Norway and South Korea completed the GES and other patient-reported outcomes as part of an international, cross-sectional, descriptive study called APPROACH-IS II. The scale’s content (missing data) and factorial validity (confirmatory factor analyses), measurement invariance (multi-group confirmatory factor analyses), responsiveness (floor and ceiling effects) and reliability (internal consistency) were assessed. Results Content validity, responsiveness and reliability were confirmed. Nonetheless, metric but not scalar measurement invariance was supported when including the three countries, possibly because the scale performed differently in the sample from South Korea. A second set of analyses supported partial scalar invariance for a sample that was limited to Norway and Belgium. Conclusion Our study offers preliminary evidence that GES is a valid and reliable measure of patient empowerment in adults with congenital heart disease. However, cross-country comparisons must be made with caution, given the scale did not perform equivalently across the three countries.

AIM: We piloted a hand hygiene (HH) project in a ward, focusing on World Health Organization moments 1 and 4. Our aim was to design highly reliable interventions to achieve >90% compliance.METHODS: Baseline HH compliance was 57 and 67% for moments 1, 4, respectively, in 2015. After the pilot ward showed sustained improvement, we launched the 'HH bundle' throughout the hospital. This included: (i) appointment of HH champions; (ii) verbal/visual bedside reminders; (iii) patient empowerment; (iv) hand moisturisers; (v) tagging near-empty handrub (HR) bottles. Other hospital-wide initiatives included: (vi) Smartphone application for auditing; (vii) 'Speak up for Patient Safety' Campaign in 2017 for staff empowerment; (viii) making HH a key performance indicator.RESULTS: Overall HH compliance increased from a baseline median of 79.6-92.6% in end-2019. Moments 1 and 4 improved from 71 to 92.7% and from 77.6 to 93.2%, respectively. Combined HR and hand wash consumption increased from a baseline median of 82.6 ml/patient day (PD) to 109.2 mL/PD. Health-care-associated rotavirus infections decreased from a baseline median of 4.5 per 10 000 PDs to 1.5 per 10 000 PDs over time.CONCLUSIONS: The 'HH Bundle' of appointing HH champions, active reminders and feedback, patient education and empowerment, availability of hand moisturisers, tagging near-empty hand rub bottles together with hospital-wide initiatives including financial incentives and the 'Speak Up for Patient Safety' campaign successfully improved the overall HH compliance to >90%. These interventions were highly reliable, sustained over 4 years and also reduced health-care-associated rotavirus infection rates.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care partners. Empowering patients and their care partners, including family members and friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable increased life participation. There is a need to broaden the focus on living well with kidney disease and reengagement in life, including emphasis on the patient being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of “Living Well with Kidney Disease” in an effort to increase education about and awareness of the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labeling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care partners should feel supported to live well through concerted efforts by kidney care communities, including during pandemics. In the overall wellness program for patients with kidney disease, the need for prevention should be reiterated. Early detection with prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures across populations, professionals, and policy makers, applicable to both developed and developing countries.

Hypertension is an increasingly prevalent condition in Ireland, affecting in excess of 50% of those over 50 years of age. While many of them undergo adequate clinical treatment, the standard of blood pressure control still remains sub-optimal mainly due to poor medication adherence fuelled by poor awareness level. The main objective of the study was to explore the impact of a structured hypertension educational intervention on patient knowledge, lifestyle behaviours and blood pressure control. Subjects for this study were recruited from disadvantaged/underserved communities in Mayo, Ireland. A multidisciplinary team comprising of specialist nurses, physiotherapist, dietitian, cardiovascular consultants and research assistants were responsible for screening and recruiting participants, collecting patient data and delivering the educational programme. Eligible participants (adults of 40 years and older) with high blood pressure were randomly assigned to either a control group or an intervention group. The control group were given standard care which included blood pressure and body mass index (BMI) measurements, lifestyle guidance and referral to general practitioner in accordance with European Society of Cardiology (ESC) guidelines. The interventional group received an educational session to improve knowledge and understanding of hypertension. A follow-up assessment was conducted for all participants 4–6 months after the educational interventional programme. A total of 102 participants were included in this study. Baseline records showed no significant difference in gender proportion, mean age, mean BMI, mean systolic blood pressure (SBP) and diastolic blood pressure (DBP) between control and intervention groups. At the follow-up assessment, a statistical reduction of mean SBP (p=0.007) and mean DBP (p=0.004) was observed in the intervention group in comparison to baseline records along with a significant increase in self-reported weekly exercise time, reduction in the number of active smokers and units of alcohol consumed weekly. Intervention group subjects had greater blood pressure reductions (mean decrease in mmHg and absolute percentage reduction) compared to control group subjects for each of the four blood pressure indicators. Providing a tailored education to individuals with hypertension can positively impact on hypertension control, knowledge and self-care management within community-based settings.

Analyzation of the use of Mobile Health (mHealth) applications in different user groups in order to evaluate the potential that mHealth provides for the prevention of non-communicable diseases (NCD). Cross-sectional online survey with 1119 participants in Switzerland. Forty percent used mHealth applications. Most participants used mHealth to promote their health (70%), influence a specific aspect of their health (59%) and monitor their fitness level (61%). mHealth was used more often by people suffering from NCD (p 0.05). Trust in the collected data was high (93%), however, participants rarely relied on scientific recommendation for choosing mHealth applications (14%) and only the minority discussed the data with a physician (19%). The majority saw advantages in using mHealth for the prevention of NCD (62%) and providing patients with the possibility to control their lifestyle changes (59%). mHealth is used across all age groups and significantly more often by people suffering from NCD. However, the collected data is not evaluated systematically. We suggest the inclusion of mHealth into the health care plan to increase patient empowerment to beneficially affect the development of NCD.

In 2017, health and social care organizations contributed 6.3% of carbon emissions in England. Efforts to reduce the environmental footprint of the National Health Service (NHS) have been broadly focused on reducing demand, through prevention and patient empowerment, and modifying supply side factors by focusing on lean care systems and low carbon alternatives. This narrative review concentrates on supply side factors to identify sustainable practices with a focus on actions that could be implemented in dermatology departments. For this study, a literature review was conducted In MEDLINE in April 2020. The search terms included 'environmental sustainability' and 'climate change' with 'dermatology', 'telemedicine', 'NHS', 'surgery' and 'operating theatres'. Out of 95 results, 20 were deemed relevant to the review. Although the review showed that there is clearly growing interest in environmental sustainability, the identified literature lacked examples of comprehensive implementation and evaluation of initiatives. The literature discussed distinct areas including transport, waste management and procurement as part of a lean healthcare system. A number of papers highlighted the potential contribution of carbon-reducing actions without citing verifiable outcome data. This narrative review highlights the need for detailed environmental impact assessments of treatment options in dermatology, in tandem with economic analysis. In conclusion, we have identified a clear need for evidence-based guidance setting out implementable actions with identifiable benefits achievable within local clinical teams. This will require engagement between clinicians, patients and healthcare organizations.

Keywords: Patient information, Information leaflet, CT, Patient empowerment, Health literacy study Abstract Introduction: Health literacy is a prerequisite for patient empowerment. In order to be able to participate in decisions about their own health, patients must have insight and knowledge; they must understand the information included in the leaflet they receive prior to the examination. Lack of patient preparation is a problem experienced by radiographers. The aim was to investigate if the information leaflets contributed to adequate knowledge about the CT examination and to look into patients' views on possible improvements. Methods: A health literacy study (HL survey) was conducted among patients who received an appointment letter and were subjected to CT examinations. Results: The total number of respondents was 25. Most were satisfied with the information leaflet when it came to both content and appearance, and they felt that the leaflet included all information necessary to be prepared for the examination, and that the content was easy to understand. Respondents with a background in the healthcare sector had higher expectations when it came to the leaflet's contents compared to those without. A small number of respondents wanted more information on contrast agents, among other things. Conclusion: The contents of the information leaflet was perceived slightly differently based on the patients' background. The patients provided useful comments in the survey, which allows for improved shared decision making.

BackgroundCongenital Disorders of Glycosylation (CDG) are a complex family of rare metabolic diseases. Robust clinical data collection faces many hurdles, preventing full CDG biological and clinical comprehension. Web-based platforms offer privileged opportunities for biomedical data gathering, and participant recruitment, particularly in rare diseases. The immunology and CDG electronic (e-) questionnaire (ImmunoCDGQ) explores this paradigm, proposing a people-centric framework to advance health research and participant empowerment.ObjectiveThe objectives of this study were to: (1) Describe and characterize the ImmunoCDGQ development, engagement, recruitment, participation, and result dissemination strategies; (2) To critically compare this framework with published literature and making recommendations.MethodsAn international, multistakeholder people-centric approach was initiated to develop and distribute the ImmunoCDGQ, a multi-lingual e-questionnaire able to collect immune-related data directly from patients and family caregivers. An adapted version was produced and distributed among the general “healthy” population (ImmunoHealthyQ), serving as the control group. Literature screening was performed to identify and analyze comparable studies.ResultsThe ImmunoCDGQ attained high participation and inclusion rates (94.6%, 209 out of 221). Comparatively to the control, CDG participants also showed higher and more variable questionnaire completion times as well as increased English version representativeness. Additionally, 20% of the CDG group (42 out of 209) chose not to complete the entire questionnaire in one go. Conditional logic structuring guided participant data provision and accurate data analysis assignment. Multi-channel recruitment created sustained engagement with Facebook emerging as the most followed social media outlet. Still, most included ImmunoCDGQ questionnaires (50.7%, 106 out of 209) were submitted within the first month of the project’s launch. Literature search and analysis showed that most e-questionnaire-based studies in rare diseases are author-built (56.8%, 25 out of 44), simultaneously addressing medical and health-related quality of life (HRQoL) and/or information needs (79.5%, 35 out of 44). Also, over 68% of the studies adopt multi-platform recruitment (30 out of 44) actively supported by patient organizations (52.3%, 23 out of 44).ConclusionsThe ImmunoCDGQ, its methodology and the CDG Community served as models for health research, hence paving a successful and reproducible road to people-centricity in biomedical research.

Background: New trends are emerging in clinical research, such as patient empowerment and an active role in influencing health and research ethics. Patients’ involvement is considered pivotal by st...

Background The FDA Patient-Focused Drug Development Initiative was launched to ensure the incorporation of the patient voice into drug development and evaluation. Since 2017, the FDA must publish a statement outlining patient experience data (PED) considered in the approval of new drugs. This study investigated the presence and role of PED in drug approval and translation into product label claims. Methods PED reported in approval packages of the 48 drugs approved by FDA’s Center for Drug Evaluation and Research in 2019 was identified and categorized. PED in the form of clinical outcome assessments (COAs) was characterized by endpoint positioning and outcome. The product labels were analyzed for PED-related claims. Results PED was reported as relevant for 39 of 48 (81.3%) drugs approved in 2019. COAs were the predominant PED type; other PED was identified for only 9 (18.8%) drugs, and none included qualitative or patient preference studies. COAs were the only type of PED for which associated claims were identified in the product labels. 27 out of 48 (56.3%) labels contained one or more efficacy claims based on COAs; of these, patient-reported outcomes were the most prevalent with claims identified in 19 labels (39.6%). Conclusion There are ample opportunities for incorporating PED beyond COAs to inform drug development and facilitate availability of medicines tailored to patient needs. A higher level of transparency on the role of PED in regulatory decision-making and a clear path to PED-based label claims could incentivize sponsors and enable patient empowerment in treatment decisions.

Purpose Psychiatric patients' awareness of treatments options and their possibilities to influence their care has increased. For the clinicians, the management of evidence-based care, as well as organizational and resource aspects, set different goals for the clinical encounter. In this article we are focusing on the clinicians' experiences and ask: How do the clinicians view situations in which there is a conflict between patients' individual needs and goals and other aspects in decision-making? Materials and methods We implemented a qualitative study of 13 thematic semi-structured interviews with clinicians working in psychiatry. We used discourse analysis to investigate how the clinician view the doctor-patient interaction. Results We identified three discources which were termed the medical standpoint, the psychodynamic standpoint and the standpoint of the patient's experience. Conclusions In their talk, the clinicians use the three discources to make sense of the diverse expectations from both the patient and the mental health care system. The three discources also reflect different aspects in psychiatric treatment cultures, such as evidence-based medicine, the ideal of patient-centeredness, therapeutic interaction and organizational requirements. publishedVersion

Background While there is broad consensus that the use of digital tools would significantly improve patient empowerment, to date, an improvement in health outcomes has been elusive. Objective The objective of this study was to assess how to improve the ability of physicians to empower patients with digital tools. Methods We conducted a web-based survey using SurveyMonkey over nearly 6 months. A questionnaire was sent with an email, explaining the aims of the survey and providing a link to complete the web-based questionnaire, to the heads of each of the 37 medical national societies adhering to the EFIM (European Federation of Internal Medicine), inviting them to disseminate the questionnaire among their members. Results Two hundred and eighteen responses were received. They suggest that the main success factors in increasing and improving patient empowerment with digital tools and realizing health goals are clinical evidence, followed by patient/physician involvement in the design, tools designed around the real needs of the patient, and reimbursement. Most of the respondents who have already prescribed digital tools for patient empowerment are just enough satisfied with the results achieved by their patients. Interestingly, 18% of the respondents had spent more than 30 min on the visit of patient to doctor. However, the majority devoted only 5–9 min to illustrating the suggested digital tools. Conclusions According to the respondents, clinical evidence, motivation, physician and patient’s involvement in design, and reimbursement, as well as organizations’ appropriate business models and support, are the main determinants of the diffusion and effective adoption of digital tools for successful patient empowerment in internal medicine.

Purpose To describe a new method of validating nursing outcomes and indicators that incorporates nurses' and patients' perspectives. Methods The Nurse-Patient Outcome Content Validation Method was developed in light of the experience of conducting the content validation of the nursing outcome Knowledge: Heart Failure Management (1835). It was developed based on Fehring's content validation model used for the validation of NANDA International nursing diagnoses. It expands the concept of who is an expert in the validation of nursing outcomes. Findings The Nurse-Patient Outcome Content Validation Method is a new method in which the concept of experts is expanded to gather patients' as well as healthcare professionals' perspectives on the importance of indicators to measure an outcome. Based on the importance ratios, the indicators are grouped into three categories: critical, supplemental, or unnecessary. To validate the outcome, importance ratios of critical and supplemental indicators are summed and divided by the total number of the indicators to calculate the outcome content validity (OCV) score of the nursing outcome. Conclusion The Nurse-Patient Outcome Content Validation Method is a new method of content validation of nursing outcome and indicators that incorporates the patient perspective. Implications for nursing practice The Nurse-Patient Outcome Content Validation Method provides a mechanism to include nurses' and patients' perspectives to content validity research of nursing outcomes. It supports patient empowerment since the patient is viewed as an expert regarding the experience of living and managing his/her clinical condition.

Background The interrelation between the worldwide incidence, mortality, and survival of patients with multiple myeloma (MM) and relevant factors such as Health Care Access and Quality (HAQ) index, gross domestic product (GDP), health care expenditures, access to cancer drugs, and patient empowerment has not been addressed before. Material and Methods Epidemiologic data were obtained from the International Agency for Research on Cancer. The mortality‐to‐incidence ratio (expressed as 1‐MIR) was used as proxy for 5‐year survival. Information on health expenditure was obtained from Bloomberg Health‐Care Efficacy ranking, the HAQ Index was used as a measure of available health care. For patient empowerment, visits to the Web site of the International Myeloma Foundation were used as proxy. Data on GDP and population per country were assessed from the International Monetary Fund and the United Nations Population Division, respectively. Possible associations were analyzed using Spearman's rank‐order correlation. Results The worldwide incidence of MM is currently 160,000, and mortality is 106,000. Age‐standardized myeloma incidence varies between 0.54 and 5.3 per 100,000 and correlates with 1‐MIR, patient empowerment, HAQ Index, and access to cancer drugs. The 1‐MIR varies between 9% and 64% and is closely related to myeloma incidence, HAQ Index, patient empowerment, access to cancer drugs, and health care expenditures. Conclusion The global incidence and outcome of MM shows significant disparities, indicating under‐recognition and suboptimal treatment in many parts of the globe. Results also highlight the importance of economic resources, access to and quality of health care, and patient education for improving diagnosis and survival of patients with MM. Implications for Practice Multiple myeloma accounts for 10% of all hematological malignancies and has moved to the forefront of clinical interest because of the significant advances in medical treatment. Diagnosis depends on laboratory tests, imaging, and professional expertise, particularly in patients without a significant M‐component. The present data show a substantial worldwide variation in incidence and mortality, that is mainly due (apart from variations due to ethnicity and lifestyle) to disparities in access to and quality of health care, a parameter strongly related to the economic development of individual countries. Improvement of quality of care and, consequently, in outcome is associated with patient empowerment., This article evaluates possible relationships between epidemiologic data on multiple myeloma and relevant factors, such as health care access and quality, economic resources, access to cancer drugs, and patient empowerment in different countries. This report informs about the complex interplay between these factors and provides the necessary basics for improving diagnosis, management, and outcome of patients with multiple myeloma in many areas of the world.

The decision as to whether or not a patient should receive radiation therapy as part of their cancer treatment is based on evidence‐based practice and on recommended international consensus treatment guidelines. However, the merit of involving the patients' individual preferences and values in the treatment decision is frequently overlooked. Here, we review the current literature pertaining to shared decision‐making (SDM) in the field of radiation oncology, including discussion of the patient's perception of radiation therapy as a treatment option and patient involvement in clinical trials. The merit of decision aids during the SDM process in radiation oncology is considered, as are patient preferences for active or passive involvement in decisions about their treatment. Clarity of terminology, a better understanding of effective strategies and increased resources will be needed to ensure SDM in radiation oncology becomes a reality., Radiation therapy is a form of cancer treatment recommended for approximately half of all cancer patients. The patient as a decision‐maker in radiation therapy is frequently overlooked. This review explores the patient perception of radiation therapy as a treatment option and the evidence for using aids in assisting patients to make a decision about their cancer care.

Objectives In an adverse event investigation, the patients have the potential to add a unique perspective because they can identify contributing factors that providers may miss. However, patients are rarely included in patient safety investigations. We aimed to identify the barriers to patient involvement in patient safety investigations and propose strategies to overcome them. Methods We reviewed literature on active participation by patients in safety investigations to construct a framework for healthcare institutions to use in approaching patients about a potential role in investigating an error in their care. We searched 3 electronic databases (PubMed, PSNet, Web of Science) for the years 1990 to 2018, without restrictions to language. Search terms included: "patient empowerment, "patient involvement," "patient participation," "patient safety investigation," "root cause analysis," "error analysis." We also examined reference lists of relevant studies to identify additional articles. Results Our electronic search produced 10,624 records with 30 potentially eligible articles. However, we identified only 6 relevant published articles. We used these as the basis for a proposed framework that is predicated on the thoughtful disclosure of adverse events and has 3 main levels (i.e., patient, clinician, and institutional level). For each level, we identify barriers to patient participation and potential strategies to overcome them. Conclusions The proposed framework can be used as a starting point to promote patient involvement in error investigations. Involving patients in patient safety investigations could increase patient centeredness, patient autonomy, and transparency and make analyses more effective by adding unique and potentially actionable information.

This paper examines the relationship between patient online health use, empowerment and treatment decision-making. A quantitative survey of 114 patients with chronic diseases highlights the impact of Internet use on shared decision-making. The study also examines the moderating effect of patient empowerment. The results indicate that the relationship between online health use and shared decision-making is stronger under a high level of empowerment.Keywords: online health use, doctor-patient relationship, shared decision-making, empowerment.JEL Classifications: I12, M31DOI: https://doi.org/10.32479/irmm.9012

Background In the abnormal circumstances caused by the COVID-19 pandemic, patient portals have supported patient empowerment and engagement by providing patients with access to their health care documents and medical information. However, the potential benefits of patient portals cannot be utilized unless the patients accept and use the services. Disparities in the use of patient portals may exacerbate the already existing inequalities in health care access and health outcomes, possibly increasing the digital inequality in societies. Objective The aim of this study is to examine the factors associated with nonuse of and dissatisfaction with the Finnish nationwide patient portal My Kanta Pages among the users of health care services during the COVID-19 outbreak. Several factors related to sociodemographic characteristics, health, and the use of health care services; experiences of guidance concerning electronic services; and digital skills and attitudes were evaluated. Methods A national population survey was sent using stratified sampling to 13,200 Finnish residents who had reached the age of 20 years. Data were collected from September 2020 to February 2021 during the COVID-19 pandemic. Respondents who had used health care services and the internet for transactions or for searching for information in the past 12 months were included in the analyses. Bivariate logistic regression analyses were used to examine the adjusted associations of respondent characteristics with the nonuse of My Kanta Pages and dissatisfaction with the service. The inverse probability weighting (IPW) method was applied in all statistical analyses to correct for bias. Results In total, 3919 (64.9%) of 6034 respondents were included in the study. Most respondents (3330/3919, 85.0%) used My Kanta Pages, and 2841 (85.3%) of them were satisfied. Nonusers (589/3919, 15%) were a minority among all respondents, and only 489 (14.7%) of the 3330 users were dissatisfied with the service. Especially patients without a long-term illness (odds ratio [OR] 2.14, 95% CI 1.48-3.10), those who were not referred to electronic health care services by a professional (OR 2.51, 95% CI 1.70-3.71), and those in need of guidance using online social and health care services (OR 2.26, 95% CI 1.41-3.65) were more likely nonusers of the patient portal. Perceptions of poor health (OR 2.10, 95% CI 1.51-2.93) and security concerns (OR 1.87, 95% CI 1.33-2.62) were associated with dissatisfaction with the service. Conclusions Patients without long-term illnesses, those not referred to electronic health care services, and those in need of guidance on the use of online social and health care services seemed to be more likely nonusers of the Finnish nationwide patient portal. Moreover, poor health and security concerns appeared to be associated with dissatisfaction with the service. Interventions to promote referral to electronic health care services by professionals are needed. Attention should be targeted to information security of the service and promotion of the public’s confidence in the protection of their confidential data.

BACKGROUND: Patient empowerment through pharmacological self-management is a common strategy in some chronic diseases such as diabetes, but it is rarely used for controlling blood pressure. OBJECTIVE : This study aimed to assess self-monitoring plus self-titration of antihypertensive medication versus usual care for reducing systolic blood pressure (SBP) at 12 months in poorly controlled hypertensive patients. DESIGN: The ADAMPA study was a pragmatic, controlled, randomized, non-masked clinical trial with two parallel arms in Valencia, Spain. PARTICIPANTS: Hypertensive patients older than 40 years, with SBP over 145 mmHg and/or diastolic blood pressure (DBP) over 90 mmHg, were recruited from July 2017 to June 2018. INTERVENTION: Participants were randomized 1:1 to usual care versus an individualized, pre-arranged plan based on self-monitoring plus self-titration. MAIN MEASURE: The primary outcome was the adjusted mean difference (AMD) in SBP between groups at 12 months. KEY RESULTS: Primary outcome data were available for 312 patients (intervention n=156, control n=156) of the 366 who were initially recruited. The AMD in SBP at 12 months (main analysis) was -2.9 mmHg (95% CI, -5.9 to 0.1, p=0.061), while the AMD in DBP was -1.9 mmHg (95% CI, -3.7 to 0.0, p=0.052). The results of the subgroup analysis were consistent with these for the main outcome measures. More patients in the intervention group achieved good blood pressure control (

Hintergrund: Unfruchtbarkeit stellt eine relevante Spätfolge nach einer Krebsbehandlung dar. Eine ausführliche und verständliche Aufklärung über behandlungsbedingte Fruchtbarkeitsrisiken und Optionen zum Fertilitätserhalt ist die Voraussetzung dafür, dass betroffene Jugendliche und ihre Eltern eine informierte Entscheidung zur Inanspruchnahme fertilitätserhaltender Maßnahmen treffen können. In einer multizentrischen Interventionsstudie untersuchten wir, wie die Verwendung von Patienteninformationsmaterial das Wissen über Fertilität, die selbstverantwortliche Entscheidungsfähigkeit sowie die Inanspruchnahme von Kryokonservierung beeinflusst. Methodik: Die Studie wurde in elf pädiatrisch-onkologischen Zentren in vier europäischen Ländern durchgeführt. Eingeschlossen wurden alle neu diagnostizierten Patient*innen im Alter von ≥ 13 Jahren, die mit Chemo- und/oder Strahlentherapie behandelt wurden. Die Kontrollgruppe erhielt eine derzeit übliche Patientenaufklärung bei Erstdiagnose. In der Interventionsgruppe wurde die Patientenaufklärung durch geschlechtsspezifisches und bebildertes Informationsmaterial unterstützt. Patient*innen und Eltern wurden gebeten, drei Monate (t0) und sechs Monate (t1) nach Erstdiagnose einen Fragebogen auszufüllen. Ergebnisse: In der Kontrollgruppe nahmen 113/142 Patient*innen (79,6 %) und 111/142 Eltern (78,2 %) teil, in der Interventionsgruppe waren es 101/134 Patient*innen (75,4 %) und 99/134 Eltern (73,9 %). Das Wissen über Fertilität war bei den Patient*innen und Eltern in der Interventionsgruppe höher als in der Kontrollgruppe, für die Unterschiede wurde jedoch keine statistische Signifikanz ermittelt (Mittelwertsunterschiede Patient*innen: 1,62 (t0) / 2,17 (t1); Eltern: 2,23 (t0) / 2,2 (t1)). Die selbstverantwortliche Entscheidungsfähigkeit verbesserte sich sowohl bei den Patient*innen (p = 0,046, d = 0,27) als auch bei den Eltern (p = 0,046, d = 0,48) in der Interventionsgruppe. Bei der Inanspruchnahme von Kryokonservierung zeigte sich kein signifikanter Unterschied zwischen der Kontrollgruppe (32,7 %, 37/113) und der Interventionsgruppe (36,6 %, 37/101). In der Kontrollgruppe war Kryokonservierung assoziiert mit dem Geschlecht (OR = 0,10, CI: 0,02–0,43), Alter (OR = 1,56, CI: 1,08–2,26) und dem Erhalt von Informationen über fertilitätserhaltende Maßnahmen (OR = 33,66, CI: 2,10–539,57). In der Interventionsgruppe war Kryokonservierung mit dem Geschlecht (OR = 0,09, CI: 0,03–0,33) und dem geschätzten Unfruchtbarkeitsrisiko (OR = 43,67, CI: 2,16–883,97) assoziiert. Schlussfolgerung: In der Interventionsgruppe, bei der die Patientenaufklärung durch Informationsmaterial unterstützt wurde, zeigte sich ein höheres Wissen über Fertilität und eine verbesserte selbstverantwortliche Entscheidungsfähigkeit bei Patient*innen und Eltern. Die Kryokonservierungsrate stieg durch die Intervention insgesamt nicht an, allerdings schien das individuelle Fertilitätsrisiko mehr in das Bewusstsein gerückt zu werden. Neben der Bereitstellung einer Fertilitätsaufklärung für alle jugendliche*n Krebspatient*innen sollte berücksichtigt werden, dass Möglichkeiten zum Fertilitätserhalt sowohl verfügbar als auch finanziell tragbar sein müssen. Weitere Forschung zur Erweiterung der bereits bestehenden Optionen ist erforderlich., Background: Infertility is a relevant late effect of cancer treatment. Detailed and understandable information about treatment-related fertility risks and fertility preservation options is a prerequisite for affected adolescents and their parents to make an informed decision on the use of fertility preservation measures. Within a multicenter intervention study, we investigated how the use of patient information material influences knowledge about fertility, patient empowerment and the use of cryopreservation. Methods: The study was conducted in eleven pediatric oncology centers in four European countries. All newly diagnosed patients aged ≥ 13 years treated with chemotherapy and/or radiotherapy were included. The control group received patient education "as usual" at initial diagnosis. In the intervention group, patient education was supported by gender-specific and illustrated information material. Patients and parents were asked to complete a questionnaire three months (t0) and six (t1) months after initial diagnosis. Results: The study involved 113/142 patients (79.6%) and 111/142 parents (78.2%) in the control group and 101/134 patients (75.4%) and 99/134 parents (73.9%) in the intervention group. Knowledge about fertility was higher among both patients and parents in the intervention group than in the control group, but no statistical significance was determined (differences in mean values patients: 1.62 (t0) / 2.17 (t1); parents: 2.23 (t0) / 2.2 (t1)). Empowerment improved in both patients (p = 0.046, d = 0.27) and parents (p = 0.046, d = 0.48) in the intervention group. Cryopreservation rates showed no significant difference between the control group (32.7%, 37/113) and the intervention group (36.6%, 37/101). In the control group, cryopreservation was associated with gender (OR = 0.10, CI: 0.02–0.43), age (OR = 1.56, CI: 1.08–2.26) and recall of information on fertility preservation (OR = 33.66, CI: 2.10–539.57). In the intervention group, cryopreservation was associated with gender (OR = 0.09, CI: 0.03–0.33) and the estimated infertility risk (OR = 43.67, CI: 2.16–883.97). Conclusion: The intervention group, in which patient education was supported by information material, showed higher knowledge about fertility and an improved empowerment among patients and parents. Cryopreservation rates did not overall increase following the intervention, but there seemed to be more awareness of the individual fertility risk. In addition to providing fertility counselling for every adolescent cancer patient, fertility preservation has to be both available and affordable. Further research to extend fertility preservation options is needed.

Diabetes melitus adalah penyakit metabolisme dimana terjadi hiperglikemia. Hal ini disebabkan oleh abnormalitas pada produksi insulin atau pada pendistribusiannya. Prevalensi diabetes melitus hingga saat ini terus meningkat di seluruh dunia termasuk di Indonesia. Menurut hasil Riset kesehatan Dasar (Riskesdas), diperoleh bahwa prevalensi diabetes melitus pada Riskesdas 2018 meningkat 2,6% dibandingkan tahun 2013 dan mencapai angka 14 juta jiwa. Diabetes melitus bukanlah hanya masalah kesehatan, namun juga masalah perilaku dan gaya hidup. Diabetes melitus dapat terjadi karena perilaku dan gaya hidup yang tidak sehat. Maka dari itu dibutuhkan pendekatan yang dapat mengubah perilaku dan gaya hidup pasien diabetes melitus. Patient empowerment dan self-management merupakan proses pendekatan yang dapat memperbaiki perilaku dan gaya hidup pasien.

Background Patient or person-centered care has become a widely used philosophical framework and yet has varying definitions and characteristics. Person-centered care has recently been conceptualized as patient empowerment, engagement, and activation with studies citing positive outcomes. Purpose This study reports the psychometric properties of the Patient Empowerment, Engagement, and Activation Survey. Methods An instrument development and testing approach was used. Results A 21-item survey was developed demonstrating respectable Cronbach α coefficients for the total scale (α = 0.88) and for each subscale: Empowerment (α = 0.71), Engagement (α = 0.81), and Activation (α = 0.76). A regression analysis with 1 item, "I am ready to be discharged" as the dependent variable and all other items as independent variables explained 65% of the variance in readiness for discharge (P Discussion The Patient Empowerment, Engagement, and Activation Survey can be used to evaluate patients' perspectives of care quality (empowerment and engagement) and readiness for discharge (activation).

IntroductionIncreased Disability Adjusted Life Year (DALY) of diabetes and hypertension draws policy attention to improve effective coverage. This study assesses effective coverage of the two conditions in Thailand between 2016 and 2019.MethodWe estimated total diabetes and hypertension cases using age and sex specific prevalence rates for respective populations. Individual data from public insurance databases (2016-2019) were retrieved to estimate three indicators: detected need (diagnosed/total estimated cases), crude coverage (received health services/total estimated cases) and effective coverage (controlled/total estimated cases). Controlled diabetes was defined as Haemoglobin A1C (HbA1C) below 7% and controlled hypertension as blood pressure below 140/90 mmHg. In-depth interview of 85 multi-stakeholder key informants was conducted to identify challenges to better effective coverage.ResultsIn 2016-2019, among Universal Coverage Scheme members residing outside Bangkok, estimated cases were around 3.1-3.2 million for diabetes and 8.7-9.2 million for hypertension. For diabetes services, all three indicators have shown slow increase over the four years (67.4%, 69.9%, 71.9%, and 74.7% for detected need; 38.7%, 43.1%, 45.1%, 49.8% for crude coverage; and 8.1%, 10.5%, 11.8%, 11.7% for effective coverage). For hypertension services, the performance was poorer for detection (48.9%, 50.3%, 51.8%, 53.3%) and crude coverage (22.3%, 24.7%, 26.5%, 29.2%) but was better for effective coverage (11.3%, 13.2%, 15.1%, 15.7%) than diabetes service. For both diseases, the estimates were higher for the females and older age groups than their counterparts. Complex interplays between supply and demand side barriers were a key challenge. Database challenges remain which hamper regular assessment of effective coverage.ConclusionGiven the increased diabetes and hypertension prevalence, strategic recommendations cover long term actions for primary prevention of known risk factors as unhealthy diet and sedentary behaviour. Short term actions aim to improve effective coverage through the application of Chronic Care Model, increase attention to non-pharmacological intervention and patient empowerment.Summary BoxWhat is already known?As Effective coverage is the gains in health resulting from health interventions, the measure provides high granularity for assessing the performance of Universal Health Coverage.Non-Communicable Diseases (NCDs) account for more than two-thirds of global deaths, with Diabetes and hypertension as the two main drivers of NCD prevalence.The effective coverage of diabetes and hypertension are important measures of Thailand’s Universal Health Coverage performance.What are the new findings?The effective coverage of diabetes and hypertension in Thailand has shown slow increase over a period of four years, in every step of care. Interestingly, effective coverage among females and older populations are better than their counterparts.The key issues resulting in low effective coverage of both diabetes and hypertension are due to inconvenient hospital hours and high workload for health care workers leading to discontinuity of care, over-crowding and long waiting times; as well as patient unwillingness to modify behavioural aspects leading to NCD’s.The major barriers to measuring effective coverage in Thailand is the lack of valid, complete, and accurate data.What do the new findings imply?Despite 17 years of Universal Health Coverage, NCDs care in Thailand is still underperformed with slow improvement year by year.Policies to address the effective coverage of diabetes and hypertension should 1. Aim to increase patient awareness and screening of NCD’s; 2. Focus on non-pharmacological intervention and patient empowerment; 3. Utilize digital technology and innovations to support the current over-stretched health personnel; 4. Strengthen campaigns to modify patient lifestyles; 5. Initiate and support population-based strategies addressing NCD risk factors.

Integrated care; Management of emergencies Atención integrada; Gestión de emergencias Atenció integrada; Gestió d'emergències More than 650 inherited metabolic diseases may present with epilepsy or seizures. These diseases are often multisystem, life-long and induce complex needs of patients and families. Multidisciplinary care involves all stages of disease management: diagnostics, specific or symptomatic, acute and chronic treatments, and integrated care that takes into account not only medical, but also manifold psychosocial, educational, vocational and other needs of patients and their caregivers. Care coordination is indispensable to ensure smooth transitions of care across life and disease stages, including management of emergencies, transition from pediatric to adult services and palliative care. Care pathways are highly diverse and have to find the right balance between highly specialized and locally provided services. While multidisciplinary teams consist of many professionals, a named supervising physician in a highly specialized healthcare setting and a care coordinator are highly important. As the greatest burden of care always falls onto the shoulders of patients and/or families, patient empowerment should be a part of every care pathway and include provision of required information, involvement into common decision-making, patient’s and family’s education, support for self-management, liaison with peer support groups and emotional/ psychological support. Due to the rarity and complexity of these diseases, sufficient expertise may not be available in a national healthcare system and cross-border services (virtual or physical) in the recently developed European Reference Networks should be ensured through the proper organization of referral systems in each EU and EEA country. Finally, digital technologies are particularly important in the provision of services for patients with rare diseases and can significantly increase the availability of highly specialized services and expertise.

PurposeTo investigate levels of empowerment, possibilities for empowerment and perceived importance of empowerment among Danes in cancer follow-up. MethodsFrom nation-wide registers a randomly selected group of people diagnosed with one of ten different cancer diagnoses between one and five years ago were invited to complete the newly developed ‘Cancer Patient Empowerment Questionnaire’ (CPEQ). Respondents who reported that they were in a follow-up program were included in the analysis. Frequencies of answers to the items in the questionnaire were calculated. ResultsIn total, 1,418 people with a diagnosis of cancer returned the questionnaire (response rate 54%). Of these, 1,042 reported being in follow-up and were included in the analysis. Most respondents experienced that there was a plan for their follow-up (83%) and felt at ease with both the frequency (80%) and content of the follow-up (78%). However, many also reported lack of possibilities for and/or low levels of empowerment. They were not aware of any decisions being made during their follow-up, had not received information about relevant patient associations, or had any conversations with healthcare professionals regarding their needs and wishes for their follow-up. Furthermore, almost 20% lacked information on and confidence in managing treatment-related side-effects, late complications and alarm symptoms. ConclusionMany respondents reported lack of possibilities for and/or low levels of empowerment in their cancer follow-up. This may have consequences for their quality of life and capabilities and opportunities for managing their own care.

BackgroundNoncommunicable diseases like hypertension and diabetes require long-term management, and are financially draining for patients and their families bearing the treatment costs, especially in settings where the inadequacy or non-existence of the health insurance system prevails. Patient empowerment-focused interventions have been shown to improve adherence to therapeutic regimens and decrease unnecessary health care utilization and costs. This study aims to examine enabling and impeding factors to the development of patient empowerment in a resource-limited setting like Cameroon. MethodsWe used qualitative methods entailing three levels of investigation and involving a public primary healthcare hospital in Yaoundé, Cameroon. Data were collected through 40 semi-structural interviews with patients having hypertension or diabetes and their family caregivers, one focus group discussion with six patients, 29 observations of consultations of patients by specialist physicians, seven observations of care received by inpatients from generalist physicians, and nine documents on the management of hypertension or diabetes. A novel approach combining thematic and lexicometric analyses was used to identify similarities and differences in barriers and facilitators associated with patient empowerment at different levels of the healthcare delivery system in Cameroon. ResultsBarriers generally outnumbered facilitators. There were particularities as well as commonalities in reported facilitators and barriers linked to patient empowerment from different experiences and perspectives of outpatients, inpatients and their family caregivers, given the healthcare services and organization of health personal and resources that deliver healthcare services to meet the health needs of patients with hypertension or diabetes in Cameroon. While specific factors identified by patients were directly related to the self-management of their disease at the individual level, family caregivers were mainly focused on factors present at organizational and central levels, which are indirectly related to the management of the diseases and beyond the control of patients and families. ConclusionsThe preponderance of individual-level factors linked to patient empowerment more than those at the central and hospital/organizational levels calls for due attention to them in the multilevel design and implementation of patient empowerment interventions in resource-limited settings like Cameroon. Accounting for patient’s and families’ perspectives and opinions may be key to improving healthcare delivery.

Empowerment and evidence-based practice represent two influential principles in nursing care: that decision-making should be based upon the patient’s autonomous choice, and the most up-to-date research findings, respectively. In this article, patient empowerment is taken to imply a transfer of control and power from the nurse to the patient through communication and care and acknowledging the patient’s perspectives and values. Empowerment-based nursing may thus be central to enhancing a patient’s autonomy. Evidence-based nursing combines up-to-date research findings, the nurse’s clinical expertise and the patient’s preferences. This article concerns some of the potential conflicts these principles may give rise to in everyday deliberations in nursing care. It is argued that patient empowerment and autonomy potentially both have paternalistic connotations. It is also questioned whether an increased emphasis on patient empowerment and autonomy may lead to a risk of diminished professional autonomy.

Prostate, kidney, and bladder cancer are the three most frequently diagnosed urological cancers. Educational programs could teach patients to become experts in disease management. The aim of this scoping review was to explore the literature to identify the educational requirements and strategies for improving and implementing educational processes for urological patients undergoing surgery. We searched several databases, including PubMed, CINAHL, Embase, Scopus, PsycINFO, and Cochrane Library. All adult patients undergoing urological educational interventions were included in the review. Of 3,197 initially identified articles, 42 were retained. Urological patients undergoing prostatectomy, cystectomy, and nephrectomy require cognitive, psychological, and functional support. For each level of support, several methods exist to provide support, including informational brochures, preoperative counseling, telephone support, online content, educational videos, support groups, individual stress management interventions, peer support, online interventions, partner support, and various educational programs that help the patient manage negative effects associated with the urological intervention.

Patient empowerment is seen as the capability to understand health information and make decisions based on it. It is a competence that can improve self-care, adherence and overall health. The COVID-19 pandemic has increased the need for information and has also reduced the number of visits to health centers. Nurses have had to adapt in order to continue offering quality care in different environments such as the digital world, but this entails assessing the level of their patients’ empowerment and adapting material and educational messages to new realities. The aim of this study is, on the one hand, to assess nurses’ use of digital resources to provide reinforcing information to their patients and, on the other hand, to evaluate how they assess the level of empowerment of their patients. To perform the study, 850 nurses answered 21 questions related to their own digital literacy and patients’ empowerment. The ability to make decisions is the characteristic most selected by nurses (70%) as useful in measuring patient empowerment, whereas 9.19% do not measure it in any way. Printed material is most often used by nurses to offer additional information to patients (71.93%), mobile applications are the least used option (21.58%), and elder nurses are those who most recommend digital resources. In this study, younger nurses make little or no use of technology as a resource for training and monitoring patients. In spite of some limitations concerning the study, digital health needs to be promoted as an indisputable tool in the nurse’s briefcase in the future to ensure that older patients can manage electronic resources in different fields.