BACKGROUND: Person-centred care (PCC) is a fundamental principle in general practice, emphasising practices tailored to individual patient preferences, needs, and values. Despite the importance of PCC, general practitioners (GPs) face obstacles in effectively implementing it, with associated factors remaining unclear. OBJECTIVES: The PACE GP/FP study aims to explore GPs' attitudes towards PCC and the factors facilitating or hindering its implementation in daily practice across European countries. This paper outlines the PACE GP/FP study protocol. METHODS: The cross-sectional design with data collection via an online survey distribution to GPs in 24 European countries. Study instruments include two validated questionnaires (Perceived Stress Scale (PSS) and Patient Physician Orientation Scale (PPOS)) and additional items covering general information about the doctor and their practice, as well as facilitators and barriers to PCC. These additional items were specifically developed for the study, translated using the forward-backward method, evaluated through cognitive debriefing, and integrated into the REDCap platform to create language and country-specific survey links. The STROBE checklist guides the reporting of the manuscript. CONCLUSION: The PACE GP/FP study will provide a comprehensive exploration of GPs' attitudes towards PCC and the factors shaping its practice in Europe. The findings from the PACE GP/FP study will provide evidence for designing future implementation strategies and guide targeted interventions to promote PCC in primary care across Europe.
- Klíčová slova
- Primary health care, general practice, person-centred care,
- MeSH
- lidé MeSH
- péče orientovaná na pacienta * MeSH
- postoj zdravotnického personálu * MeSH
- praktické lékařství organizace a řízení MeSH
- praktičtí lékaři * psychologie MeSH
- průřezové studie MeSH
- průzkumy a dotazníky MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Evropa MeSH
This report delves into the challenges and potential solutions associated with flexible, customized subcutaneous immunoglobulin (SCIG) infusion regimens for patients with primary antibody deficiency disease (PAD). Advances in the treatment of inborn errors of immunity, particularly PAD, have converted fatal diseases into chronic, complex, long-term conditions that make adherence to treatment a critical issue. Conventional SCIG infusion regimens, while clinically effective, may not always align with the varied lifestyles, changing lifestyles and commitments of patients which can lead to missed doses, diminishing adherence thus posing potential health risks and compromising the overall effectiveness of treatment. For these reasons, it's important to develop flexible infusion regimens tailored to meet individual patient needs. Patient-centric strategies that promote shared decision-making and awareness of patient status not only promote medical efficacy but also enhance the overall patient experience. The authors of this report call attention for a need to shift toward more adaptable and individualized SCIG treatment plans for PAD patients whose needs may change over the long-term course of treatment.
Primary antibody deficiency (PAD) is a condition where the immune system doesn’t work properly, making it hard for the body to fight infections. To stay healthy, people with PAD need regular doses of a medication called immunoglobulin (IgG), which helps strengthen the immune system. This medication can be given in two main ways: through a vein (intravenously, or IVIG) or under the skin (subcutaneously, or SCIG). SCIG has some important benefits. It can be given at home, making it easier for patients to fit treatment into their daily lives. SCIG also causes fewer side effects compared to IVIG. Patients can choose when to take SCIG, making it more flexible and convenient. This article explains how doctors and patients can work together to make SCIG fit into each person’s lifestyle. Flexibility can make treatment less stressful and help patients stick to their treatment plan. One type of SCIG, called SCIG 16.5%, can be taken daily, weekly, every 2 weeks, or multiple times a week as long as the total monthly dose stays the same. Flexible ways to use SCIG are safe and effective and can help people manage their treatment leading to better health over time.
- Klíčová slova
- Cutaquig, Immunoglobulin replacement therapy, patient-centric, primary antibody deficiency disease, shared decision-making, subcutaneous immunoglobulin,
- MeSH
- imunoglobuliny terapeutické užití aplikace a dávkování MeSH
- individualizovaná medicína MeSH
- lidé MeSH
- péče orientovaná na pacienta * MeSH
- primární imunodeficience terapie imunologie MeSH
- subkutánní infuze * MeSH
- syndromy imunologické nedostatečnosti * terapie farmakoterapie MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- přehledy MeSH
- Názvy látek
- imunoglobuliny MeSH
The traditional healthcare model is focused on diseases (medicine and natural science) and does not acknowledge patients' resources and abilities to be experts in their own lives based on their lived experiences. Improving healthcare safety, quality, and coordination, as well as quality of life, is an important aim in the care of patients with chronic conditions. Person-centered care needs to ensure that people's values and preferences guide clinical decisions. This paper reviews current knowledge to develop (1) digital care pathways for rhinitis and asthma multimorbidity and (2) digitally enabled, person-centered care.1 It combines all relevant research evidence, including the so-called real-world evidence, with the ultimate goal to develop digitally enabled, patient-centered care. The paper includes (1) Allergic Rhinitis and its Impact on Asthma (ARIA), a 2-decade journey, (2) Grading of Recommendations, Assessment, Development and Evaluation (GRADE), the evidence-based model of guidelines in airway diseases, (3) mHealth impact on airway diseases, (4) From guidelines to digital care pathways, (5) Embedding Planetary Health, (6) Novel classification of rhinitis and asthma, (7) Embedding real-life data with population-based studies, (8) The ARIA-EAACI (European Academy of Allergy and Clinical Immunology) strategy for the management of airway diseases using digital biomarkers, (9) Artificial intelligence, (10) The development of digitally enabled, ARIA person-centered care, and (11) The political agenda. The ultimate goal is to propose ARIA 2024 guidelines centered around the patient to make them more applicable and sustainable.
- Klíčová slova
- ARIA, Artificial intelligence, Asthma, Evidence-based medicine, Person-centered care, Rhinitis, mHealth,
- MeSH
- alergická rýma * terapie MeSH
- bronchiální astma * terapie MeSH
- kritické cesty MeSH
- lidé MeSH
- péče orientovaná na pacienta * MeSH
- směrnice pro lékařskou praxi jako téma MeSH
- telemedicína * MeSH
- umělá inteligence * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- přehledy MeSH
BACKGROUND: Childhood cancer survivors face high risks of adverse late health effects. Long-term follow-up care for childhood cancer survivors is crucial to improve their health and quality of life. However, implementation remains a challenge. To support implementation of high-quality long-term follow-up care, we explored expected barriers and facilitators for establishing this follow-up care among healthcare providers from four European clinics. METHODS: A qualitative study was conducted using four focus groups comprising 30 healthcare providers in total. The semi-structured interview guide was developed based on the Grol and Wensing framework. Data was analyzed following a thematic analysis, combining both inductive and deductive approaches to identify barriers and facilitators across the six levels of Grol and Wensing: innovation, professional, patient, social, organizational and economic and political. RESULTS: Most barriers were identified on the organizational level, including insufficient staff, time, capacity and psychosocial support. Other main barriers included limited knowledge of late effects among healthcare providers outside the long-term follow-up care team, inability of some survivors to complete the survivor questionnaire and financial resources. Main facilitators included motivated healthcare providers and survivors, a skilled hospital team, collaborations with important stakeholders like general practitioners, and psychosocial care facilities, utilization of the international collaboration and reporting long-term follow-up care results to convince hospital managers. CONCLUSION: This study identified several factors for successful implementation of long-term follow-up care for childhood cancer survivors. Our findings showed that specific attention should be given to knowledge, capacity, and financial issues, along with addressing psychosocial issues of survivors.
- Klíčová slova
- barriers and facilitators, cancer survivorship, childhood cancer, follow‐up care, healthcare providers, implementation science, late effects,
- MeSH
- dítě MeSH
- dlouhodobá péče MeSH
- dospělí MeSH
- kvalita života MeSH
- kvalitativní výzkum * MeSH
- lidé MeSH
- nádory psychologie terapie MeSH
- následná péče MeSH
- následné studie MeSH
- péče orientovaná na pacienta MeSH
- postoj zdravotnického personálu MeSH
- přežívající onkologičtí pacienti * psychologie MeSH
- zdravotnický personál * psychologie MeSH
- zjišťování skupinových postojů MeSH
- Check Tag
- dítě MeSH
- dospělí MeSH
- lidé MeSH
- mužské pohlaví MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
OBJECTIVES: The current project aimed to improve the quality of health care by promoting evidence-based practice (EBP) regarding mental health care planning (MHCP) for adult inpatients. INTRODUCTION: The implementation of the best evidence in the process of developing and documenting nursing care plans is currently an important legal requirement that contributes to increasing the quality of care. METHODS: This implementation project was based on the JBI evidence implementation approach and included a baseline audit of seven criteria, implementation of strategies, and a follow-up audit. The project was conducted in an acute psychiatric setting at a university hospital in Bucharest, Romania. The sample included 17 nurses and 30 ward patients. RESULTS: The baseline audit revealed low compliance (33%-37%) for criterion 3 (a comprehensive care plan) and criterion 4 (patient involvement); moderate compliance (55%) for criterion 1 (care plan for all patients); and increased compliance (97%-100%) for criterion 2 (assessment of patient's needs), criterion 5 (education of patients/caregivers), criterion 6 (providing a copy at discharge), and criterion 7 (education of professionals). As a result of implementing the most appropriate strategies, the maximum improvement (100%) was observed across all five audit criteria that were found to be deficient in the baseline audit. CONCLUSION: The development and implementation of strategies adapted to specific care need to play a key role in the implementation of EBP. In this case, educating nurses, facilitating nurses' access to EBP for care planning, and improving procedures proved effective in achieving maximum compliance with all the audit criteria.
Fabry disease (FD, α-galactosidase A deficiency) is a rare, progressive, complex lysosomal storage disorder affecting multiple organ systems with a diverse spectrum of clinical phenotypes, particularly among female patients. Knowledge of its clinical course was still limited in 2001 when FD-specific therapies first became available and the Fabry Registry (NCT00196742; sponsor: Sanofi) was initiated as a global observational study. The Fabry Registry has now been operational for over 20 years, overseen by expert Boards of Advisors, and has collected real-world demographic and longitudinal clinical data from more than 8000 individuals with FD. Leveraging the accumulating evidence base, multidisciplinary collaborations have resulted in the creation of 32 peer-reviewed scientific publications, which have contributed to the greatly expanded knowledge on the onset and progression of FD, its clinical management, the role of sex and genetics, the outcomes of enzyme replacement therapy with agalsidase beta, and prognostic factors. We review how the Fabry Registry has evolved from its inception to become the largest global source of real-world FD patient data, and how the generated scientific evidence has helped to better inform the medical community, individuals living with FD, patient organizations, and other stakeholders. The patient-centered Fabry Registry fosters collaborative research partnerships with the overarching goal of optimizing the clinical management of patients with FD and is well positioned to add to its past achievements.
- Klíčová slova
- Fabry disease, Registry, agalsidase beta, enzyme replacement therapy, natural history, real-world data,
- MeSH
- alfa-galaktosidasa genetika terapeutické užití MeSH
- enzymová substituční terapie metody MeSH
- Fabryho nemoc * farmakoterapie epidemiologie genetika MeSH
- fenotyp MeSH
- lidé MeSH
- péče orientovaná na pacienta MeSH
- pozorovací studie jako téma MeSH
- registrace MeSH
- Check Tag
- lidé MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- přehledy MeSH
- Názvy látek
- alfa-galaktosidasa MeSH
Biomarkers for the diagnosis, treatment and follow-up of patients with rhinitis and/or asthma are urgently needed. Although some biologic biomarkers exist in specialist care for asthma, they cannot be largely used in primary care. There are no validated biomarkers in rhinitis or allergen immunotherapy (AIT) that can be used in clinical practice. The digital transformation of health and health care (including mHealth) places the patient at the center of the health system and is likely to optimize the practice of allergy. Allergic Rhinitis and its Impact on Asthma (ARIA) and EAACI (European Academy of Allergy and Clinical Immunology) developed a Task Force aimed at proposing patient-reported outcome measures (PROMs) as digital biomarkers that can be easily used for different purposes in rhinitis and asthma. It first defined control digital biomarkers that should make a bridge between clinical practice, randomized controlled trials, observational real-life studies and allergen challenges. Using the MASK-air app as a model, a daily electronic combined symptom-medication score for allergic diseases (CSMS) or for asthma (e-DASTHMA), combined with a monthly control questionnaire, was embedded in a strategy similar to the diabetes approach for disease control. To mimic real-life, it secondly proposed quality-of-life digital biomarkers including daily EQ-5D visual analogue scales and the bi-weekly RhinAsthma Patient Perspective (RAAP). The potential implications for the management of allergic respiratory diseases were proposed.
- Klíčová slova
- ARIA, EAACI, apps, digital health, rhinitis,
- MeSH
- alergická rýma * diagnóza terapie MeSH
- biologické markery MeSH
- bronchiální astma * diagnóza terapie MeSH
- lidé MeSH
- péče orientovaná na pacienta MeSH
- poruchy dýchání * MeSH
- rinitida * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- přehledy MeSH
- Názvy látek
- biologické markery MeSH
There is a persistent variation in cancer outcomes among and within European countries suggesting (among other causes) inequalities in access to or delivery of high-quality cancer care. European policy (EU Cancer Mission and Europe's Beating Cancer Plan) is currently moving towards a mission-oriented approach addressing these inequalities. In this study, we used the quantitative and qualitative data of the Organisation of European Cancer Institutes' Accreditation and Designation Programme, relating to 40 large European cancer centres, to describe their current compliance with quality standards, to identify the hallmarks common to all centres and to show the distinctive features of Comprehensive Cancer Centres. All Comprehensive Cancer Centres and Cancer Centres accredited by the Organisation of European Cancer Institutes show good compliance with quality standards related to care, multidisciplinarity and patient centredness. However, Comprehensive Cancer Centres on average showed significantly better scores on indicators related to the volume, quality and integration of translational research, such as high-impact publications, clinical trial activity (especially in phase I and phase IIa trials) and filing more patents as early indicators of innovation. However, irrespective of their size, centres show significant variability regarding effective governance when functioning as entities within larger hospitals.
- Klíčová slova
- accreditation, clinical trials, comprehensive cancer center, multidisciplinarity, quality standard, translational research,
- MeSH
- akademie a ústavy normy statistika a číselné údaje MeSH
- biomedicínský výzkum organizace a řízení normy statistika a číselné údaje MeSH
- kohortové studie MeSH
- kvalita zdravotní péče * MeSH
- lékařská onkologie normy statistika a číselné údaje MeSH
- lidé MeSH
- nádory epidemiologie terapie MeSH
- onkologická péče - zařízení * organizace a řízení statistika a číselné údaje MeSH
- péče orientovaná na pacienta organizace a řízení normy statistika a číselné údaje MeSH
- translační biomedicínský výzkum metody organizace a řízení statistika a číselné údaje MeSH
- týmová péče o pacienty organizace a řízení normy statistika a číselné údaje MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- Geografické názvy
- Evropa epidemiologie MeSH
This position paper has been drafted by experts from the Czech national board of diseases with bronchial obstruction, of the Czech Pneumological and Phthisiological Society. The statements and recommendations are based on both the results of randomized controlled trials and data from cross-sectional and prospective real-life studies to ensure they are as close as possible to the context of daily clinical practice and the current health care system of the Czech Republic. Chronic Obstructive Pulmonary Disease (COPD) is a preventable and treatable heterogeneous syndrome with a number of pulmonary and extrapulmonary clinical features and concomitant chronic diseases. The disease is associated with significant mortality, morbidity and reduced quality of life. The main characteristics include persistent respiratory symptoms and only partially reversible airflow obstruction developing due to an abnormal inflammatory response of the lungs to noxious particles and gases. Oxidative stress, protease-antiprotease imbalance and increased numbers of pro-inflammatory cells (mainly neutrophils) are the main drivers of primarily non-infectious inflammation in COPD. Besides smoking, household air pollution, occupational exposure, low birth weight, frequent respiratory infections during childhood and also genetic factors are important risk factors of COPD development. Progressive airflow limitation and airway remodelling leads to air trapping, static and dynamic hyperinflation, gas exchange abnormalities and decreased exercise capacity. Various features of the disease are expressed unequally in individual patients, resulting in various types of disease presentation, emerging as the "clinical phenotypes" (for specific clinical characteristics) and "treatable traits" (for treatable characteristics) concept. The estimated prevalence of COPD in Czechia is around 6.7% with 3,200-3,500 deaths reported annually. The elementary requirements for diagnosis of COPD are spirometric confirmation of post-bronchodilator airflow obstruction (post-BD FEV1/VCmax <70%) and respiratory symptoms assessement (dyspnoea, exercise limitation, cough and/or sputum production. In order to establish definite COPD diagnosis, a five-step evaluation should be performed, including: 1/ inhalation risk assessment, 2/ symptoms evaluation, 3/ lung function tests, 4/ laboratory tests and 5/ imaging. At the same time, all alternative diagnoses should be excluded. For disease classification, this position paper uses both GOLD stages (1 to 4), GOLD groups (A to D) and evaluation of clinical phenotype(s). Prognosis assessment should be done in each patient. For this purpose, we recommend the use of the BODE or the CADOT index. Six elementary clinical phenotypes are recognized, including chronic bronchitis, frequent exacerbator, emphysematous, asthma/COPD overlap (ACO), bronchiectases with COPD overlap (BCO) and pulmonary cachexia. In our concept, all of these clinical phenotypes are also considered independent treatable traits. For each treatable trait, specific pharmacological and non-pharmacological therapies are defined in this document. The coincidence of two or more clinical phenotypes (i.e., treatable traits) may occur in a single individual, giving the opportunity of fully individualized, phenotype-specific treatment. Treatment of COPD should reflect the complexity and heterogeneity of the disease and be tailored to individual patients. Major goals of COPD treatment are symptom reduction and decreased exacerbation risk. Treatment strategy is divided into five strata: risk elimination, basic treatment, phenotype-specific treatment, treatment of respiratory failure and palliative care, and treatment of comorbidities. Risk elimination includes interventions against tobacco smoking and environmental/occupational exposures. Basic treatment is based on bronchodilator therapy, pulmonary rehabilitation, vaccination, care for appropriate nutrition, inhalation training, education and psychosocial support. Adequate phenotype-specific treatment varies phenotype by phenotype, including more than ten different pharmacological and non-pharmacological strategies. If more than one clinical phenotype is present, treatment strategy should follow the expression of each phenotypic label separately. In such patients, multicomponental therapeutic regimens are needed, resulting in fully individualized care. In the future, stronger measures against smoking, improvements in occupational and environmental health, early diagnosis strategies, as well as biomarker identification for patients responsive to specific treatments are warranted. New classes of treatment (inhaled PDE3/4 inhibitors, single molecule dual bronchodilators, anti-inflammatory drugs, gene editing molecules or new bronchoscopic procedures) are expected to enter the clinical practice in a very few years.
- Klíčová slova
- COPD; position paper; clinical phenotypes; treatable traits; bronchodilators; individualized care; personalized medicine,
- MeSH
- bronchodilatancia normy terapeutické užití MeSH
- chronická nemoc terapie MeSH
- chronická obstrukční plicní nemoc diagnóza genetika patofyziologie terapie MeSH
- dospělí MeSH
- fenotyp * MeSH
- lidé středního věku MeSH
- lidé MeSH
- péče orientovaná na pacienta normy MeSH
- pneumologie normy MeSH
- prospektivní studie MeSH
- průřezové studie MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- směrnice pro lékařskou praxi jako téma * MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
- Názvy látek
- bronchodilatancia MeSH
- MeSH
- kvalita života MeSH
- lidé MeSH
- Parkinsonova nemoc * terapie MeSH
- péče orientovaná na pacienta MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- dopisy MeSH
- komentáře MeSH
