Hematological malignancies and treatment with hematopoietic SCT are known to affect patients’ quality of life. The problem profile and care needs of this patient group need clarification, however. This study aimed to assess distress, problems and care needs after allo- or auto-SCT, and to identify risk factors for distress, problems or care needs. In this cross-sectional study, patients treated with allo-SCT or auto-SCT for hematological malignancies completed the Distress Thermometer and Problem List. Three patient groups were created: 0–1, 1–2.5 and 2.5–5.5 years after transplantation. After allo-SCT, distress and the number of problems tended to be lower with longer follow-up. After auto-SCT, distress was highest at 1–2.5 year(s). Patients mainly reported physical problems, followed by cognitive-emotional and practical problems. A minority reported care needs. Risk factors for distress as well as problems after allo-SCT included younger age, shorter time after transplantation and GVHD. A risk factor for distress as well as problems after auto-SCT was the presence of comorbid diseases. Up to 5 years after auto-SCT or allo-SCT, patients continue to experience distress and problems. Judged by prevalence, physical problems are first priority in supportive care, followed by cognitive-emotional and practical problems.
Physiotherapy, Dietetics and Occupational Therapy have been collaborating over recent years to develop an optimal healthcare programme for patients with Post Intensive Care Syndrome (PICS). This case is an example of PICS symptomatology and focuses on the collaboration between Physiotherapy and Dietetics. What is PICS? Owing to healthcare improvements, more and more patients are surviving the intensive Care Unit (ICU), and recovery during and after ICU stay has been receiving more attention [1, 2]. Approximately 30% of the patients admitted to an ICU have persistent symptoms including muscle weakness, reduced walking ability, fatigue, concentration deficits, memory problems, malnutrition, sleep and mood disorders sometimes even years after discharge [3-8]. Since 2012, this combination of physical, cognitive and psychiatric manifestations and reduced quality of life after staying in an ICU has been recognised as Post Intensive Care Syndrome (PICS) [9]. The impact of PICS is often not limited to the patient as it may also impact the mental status of the patient’s immediate family. This is known as PICS-Family (PICS-F) [10-12]. Treatment of PICS: Approximately 80% of PICS patients need primary care physiotherapy. Physiotherapists and GPs are often the only primary care professionals involved in the recovery process of these patients after hospital discharge [13, 14]. Both patients and healthcare professionals report a number of difficulties, e.g. limited transmural continuity in healthcare, coordination of multidisciplinary activities, supportive treatment guidelines and specific knowledge of pathology, treatment and prognosis. Patients report that they are not adequately supported when resuming their professional activities and that medical and allied healthcare treatments do not fully meet their needs at that time [15-18]. The REACH project: In order to improve the situation, the REACH project (REhabilitation After Critical illness and Hospital discharge) was started in Amsterdam region in the Netherlands. Within REACH, a Community of Practice – consisting of professionals (physiotherapists, occupational therapists, dieticians), those who live or have lived with the condition and researchers – has developed a transmural rehab programme. A special attribute of this programme is the integration of the concept of “positive health”. The case in this article describes the treatment of a PICS patient treated within the REACH network.
Background: The substitution of healthcare is a way to control rising healthcare costs. The Primary Care Plus (PC+) intervention of the Dutch ‘Blue Care’ pioneer site aims to achieve this feat by facilitating consultations with medical specialists in the primary care setting. One of the specialties involved is dermatology. This study explores referral decisions following dermatology care in PC+ and the influence of predictive patient and consultation characteristics on this decision. Methods: This retrospective study used clinical data of patients who received dermatology care in PC+ between January 2015 and March 2017. The referral decision following PC+, (i.e., referral back to the general practitioner (GP) or referral to outpatient hospital care) was the primary outcome. Stepwise logistic regression modelling was used to describe variations in the referral decisions following PC+, with patient age and gender, number of PC+ consultations, patient diagnosis and treatment specialist as the predicting factors. Results: A total of 2952 patients visited PC+ for dermatology care. Of those patients with a registered referral, 80.2% (N = 2254) were referred back to the GP, and 19.8% (N = 558) were referred to outpatient hospital care. In the multivariable model, only the treating specialist and patient’s diagnosis independently influenced the referral decisions following PC+. Conclusion: The aim of PC+ is to reduce the number of referrals to outpatient hospital care. According to the results, the treating specialist and patient diagnosis influence referral decisions. Therefore, the results of this study can be used to discuss and improve specialist and patient profiles for PC+ to further optimise the effectiveness of the initiative.
-Chatbots are being used at an increasing rate, for instance, for simple Q&A conversations, flight reservations, online shopping and news aggregation. However, users expect to be served as effective and reliable as they were with human-based systems and are unforgiving once the system fails to understand them, engage them or show them human empathy. This problem is more prominent when the technology is used in domains such as health care, where empathy and the ability to give emotional support are most essential during interaction with the person. Empathy, however, is a unique human skill, and conversational agents such as chatbots cannot yet express empathy in nuanced ways to account for its complex nature and quality. This project focuses on designing emotionally supportive conversational agents within the mental health domain. We take a user-centered co-creation approach to focus on the mental health problems of sexual assault victims. This group is chosen specifically, because of the high rate of the sexual assault incidents and its lifetime destructive effects on the victim and the fact that although early intervention and treatment is necessary to prevent future mental health problems, these incidents largely go unreported due to the stigma attached to sexual assault. On the other hand, research shows that people feel more comfortable talking to chatbots about intimate topics since they feel no fear of judgment. We think an emotionally supportive and empathic chatbot specifically designed to encourage self-disclosure among sexual assault victims could help those who remain silent in fear of negative evaluation and empower them to process their experience better and take the necessary steps towards treatment early on.
Voldoende bewegen, genoeg slapen en de hoeveelheid zitten en beeldschermgedrag beperken is een vereiste voor een gezonde groei en ontwikkeling van jonge kinderen. Daarnaast wordt in de jongste levensfase de basis gelegd een leven lang bewegen door de ontwikkeling van motorische vaardigheden en het aanleren van actieve beweegroutines. De afgelopen jaren zijn de beweegpatronen van (jonge) kinderen steeds ongezonder geworden en de WHO heeft de toenemende fysieke inactiviteit wereldwijd bestempeld als een urgent probleem. Het doel van dit project is het ontwikkelen van een tool (checklist) om via een ‘whole systems approach’ een gezond 24-uurs beweeggedrag te stimuleren voor kinderen van 0 tot 6 jaar. Deze tool, bedoeld voor meerdere stakeholders zoals gemeenten, kinderopvang- en schooldirecteuren of leerkrachten en pedagogisch professionals, kan de basis vormen voor bewustwording, het ondernemen van actie, toetsing en mogelijk wet- en regelgeving. Items op de checklist zullen onder andere gericht zijn op beleid, scholing van leerkrachten en pedagogisch professionals, interactievaardigheden en de fysieke omgeving. De voorgestelde samenwerking tussen kennispartners in Nederland, Noorwegen en België in combinatie met de adviesraad zorgt voor een unieke basis om de ontwikkeling, implementatie, duurzame inzet en borging van deze tool succesvol te laten verlopen. Het project sluit daarbij ook naadloos aan bij de opgestelde landelijke kennisagenda rondom ‘van jongs af aan vaardig in beweging’ en is in lijn met de Europese onderzoek en innovatieagenda van Horizon Europe 2025-2027. De krachtige internationale netwerkvorming voorziet in een duurzaam karakter door een inhoudelijke expertise matching waarin partners van elkaar kunnen leren en hierdoor een sterke wisselwerking kan plaatsvinden, waarmee een krachtige (inter)nationale positie op het gebied van gezond, actief opgroeien van jonge kinderen kan worden ingenomen. Daarnaast heeft de (kennis)netwerkvorming een positieve weerslag op de regionale ‘twee-snelheden-uitdaging’ waarmee de Brainportregio kampt door een sterke internationale instroom van kenniswerkers.
Aanleiding Kanker is in Nederland de meest voorkomende doodsoorzaak onder kinderen. Onderzoek is vooral gericht op behandelmethoden als chemo-, radiotherapie en chirurgie en niet op 'supportive care' zoals voeding en beweging. Bij de meeste kinderen met kanker is eten en bewegen problematisch. Er treedt onder- of overvoeding op terwijl de spiermassa afneemt. Het ontbreekt professionals aan gevalideerde interventies gericht op het stimuleren van adequaat eet- en beweeggedrag. De situatie verschilt per kind, per type kanker en per behandelfase. Dat maakt dat er ook niet één generieke interventie bestaat. Wat het bovendien complex maakt is dat er zo veel mensen bij zo'n interventie betrokkenen zijn in zowel de ziekenhuis- als privéomgeving van de patiënt. Doelstelling In dit RAAK-project zullen betrokkenen in de privé- en ziekenhuisomgeving van kinderen met kanker samen met professionele ontwerpers twee interventies toepassen, die kleinschalig in een kinderziekenhuis geïmplementeerd en geëvalueerd worden. De methode die daarvoor gebruikt wordt heet participatief ontwerpen. In deze aanpak werken alle betrokkenen samen via creatieve en visuele technieken zoals dagboekmethoden en foto-opdrachten. Via deze methode kunnen betrokkenen communiceren over het onderwerp, niet gehinderd door emoties of barrières voortkomend uit jargon en/of discipline. De interventies zullen worden getoetst op toepasbaarheid en draagvlak. Beoogde resultaten De ervaring die is opgedaan met de participatieve ontwerpmethoden en de toegepaste interventies is vastgelegd, geanalyseerd en verwerkt. Het project resulteert in een toolkit die informatie en inspiratie biedt over voeding en beweging voor kinderen met kanker. Bovendien worden er richtlijnen voor participatief ontwerpen in kinderoncologie opgesteld. De verspreiding van kennis en de implementatie van toolkit en richtlijnen vindt plaats via de project- en netwerkleden.
