Purpose Implementation of patient-reported outcome measures (PROMs) in clinical routine requires knowledge and competences regarding their use. In order to facilitate implementation, an e-learning... Show morePurpose Implementation of patient-reported outcome measures (PROMs) in clinical routine requires knowledge and competences regarding their use. In order to facilitate implementation, an e-learning course for health care professionals (HCPs) on the utilisation of European Organisation for Research and Treatment of Cancer (EORTC) PROMs in oncological clinical practice is being developed. This study aimed to explore future users' educational needs regarding content and learning methods. Methods The sequential mixed methods approach was applied. A scoping literature review informed the guideline for qualitative interviews with HCPs with diverse professional backgrounds in oncology and cancer advocates recruited using a purposive sampling strategy. An international online survey was conducted to validate the qualitative findings. Results Between December 2019 and May 2020, 73 interviews were conducted in 9 countries resulting in 8 topic areas (Basic information on PROs in clinical routine, Benefits of PRO assessments in clinical practice, Implementation of PRO assessments in clinical routine, Setup of PRO assessments for clinical application, Interpretation of PRO data, Integration of PROs into the communication with patients, Use of PROs in clinical practice, Self-management recommendations for patients based on PROs) subsequently presented in the online survey. The online survey (open between 3 June and 19 July 2020) was completed by 233 HCPs from 33 countries. The highest preference was indicated for content on interpretation of PRO data (97%), clinical benefits of assessing PRO data (95.3%) and implementation of routine PRO data assessment (94.8%). Regarding learning methods, participants indicated a high preference for practical examples that use a mixed approach of presentation (written, audio, video and interactive). Conclusion Educational needs for an integration of PROs in communication in clinical care and coherent implementation strategies became evident. These results inform the development of an e-learning course to support HCPs in the clinical use of EORTC PRO measures. Show less
Introduction: Caring for a child with epilepsy has a significant impact on parental quality of life. Seizure unpredictability and complications, including sudden unexpected death in epilepsy (SUDEP... Show moreIntroduction: Caring for a child with epilepsy has a significant impact on parental quality of life. Seizure unpredictability and complications, including sudden unexpected death in epilepsy (SUDEP), may cause high parental stress and increased anxiety. Nocturnal supervision with seizure detection devices may lower SUDEP risk and decrease parental burden of seizure monitoring, but little is known about their added value in family homes. Methods: We conducted semi-structured in-depth interviews with parents of children with refractory epilepsy participating in the PROMISE trial (NCT03909984) to explore the value of seizure detection in the daily care of their child. Children were aged 4-16 years, treated at a tertiary epilepsy center, had at least one nocturnal major motor seizure per week, and used a wearable seizure detection device (NightWatch) for two months at home. Data were analyzed using inductive thematic analysis. Results: Twenty three parents of nineteen children with refractory epilepsy were interviewed. All parents expressed their fear of missing a large seizure and the possible consequences of not intervening in time. Some parents felt the threat of child loss during every seizure, while others thought about it from time to time. The fear could fluctuate over time, mainly associated with fluctuations of seizure frequency. Most parents described how they developed a protective behavior, driven by this fear. The way parents handled the care of their child and experienced the burden of care influenced their perceptions on the added value of NightWatch. The experienced value of NightWatch depended on the amount of assurance it could offer to reduce their fear and the associated protective behavior as well as their resilience to handle the potential extra burden of care, due to false alarms or technical problems. Conclusion: Healthcare professionals and device companies should be aware of parental protective behavior and the high parental burden of care and develop tailored strategies to optimize seizure detection device care. (c) 2021 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/). Show less
Background: Smoking is more prevalent and persistent among lower socio-economic status (SES) compared with higher-SES groups, and contributes greatly to SES-based health inequities. Few... Show moreBackground: Smoking is more prevalent and persistent among lower socio-economic status (SES) compared with higher-SES groups, and contributes greatly to SES-based health inequities. Few interventions exist that effectively help lower-SES smokers quit. This study evaluated "De StopCoach", a mobile phone delivered eHealth intervention targeted at lower-SES smokers based on the evidence-based StopAdvisor, in a real-world setting (five municipalities) in The Netherlands in 2019-2020.Method: We conducted individual semi-structured interviews with project leaders, healthcare professionals, and participating smokers (N = 22), and examined log data from the app (N = 235). For practical reasons, SES of app users was not measured. Qualitative data were analysed using the Framework Approach, with the Consolidated Framework for Implementation Research (CFIR) and Unified Theory of Acceptance and Use of Technology (UTAUT) as theoretical models.Results: Qualitative data showed that factors from the Intervention and Setting domains were most important for the implementation. StopCoach seemed suitable for lower-SES smokers in terms of performance and effort expectancy, especially when integrated with regular smoking cessation counseling (SCC). Key barriers to implementation of the app were limited integration of the app in SCC programs in practice, difficulty experienced by project leaders and healthcare professionals to engage the local community, and barriers to SCC more generally (e.g., perceived resistance to quitting in patients) that prevented healthcare professionals from offering the app to smokers. Quantitative data showed that 48% of app users continued using the app after the preparation phase and pre-quit day, and that 33% of app users had attempted to quit. Both app adherence and quit attempts were more likely if smokers also received SCC from a professional coach. Posthoc analyses suggest that adherence is related to higher likelihood of a quit attempt among participants with and without a professional coach.Conclusions: Smokers, healthcare professionals and project leaders indicated in the interviews that the StopCoach app would work best when combined with SCC. It also appears from app log that app adherence and quit attempts by app users can be facilitated by combining the app with face-to-face SCC. As such, blended care appears promising for helping individual smokers quit, as it combines the best of regular SCC and eHealth. Further research on blended care for lower-SES smokers is needed. Show less
Family health history (FHH) is a valuable yet underused healthcare tool for assessing health risks for both prevalent disorders like diabetes, cancer, and cardiovascular diseases, and for rare,... Show moreFamily health history (FHH) is a valuable yet underused healthcare tool for assessing health risks for both prevalent disorders like diabetes, cancer, and cardiovascular diseases, and for rare, monogenic disorders. Full implementation of FHH collection and analysis in healthcare could improve both primary and secondary disease prevention for individuals and, through cascade testing, make at risk family members eligible for pre-symptomatic testing and preventative interventions. In addition to risk assessment in the clinic, FHH is increasingly important for interpreting clinical genetic testing results and for research connecting health risks to genomic variation. Despite this value, diverse implementation gaps in clinical settings undermine its potential clinical value and limit the quality of connected health and genomic data. The NHGRI Family Health History Group, an open-membership, US-based group with international members, believes that integrating FHH in healthcare and research is more important than ever, and that achievable implementation advances, including education, are urgently needed to boost the pace of translational utility in genomic medicine. An inventory of implementation gaps and proposed achievable strategies to address them, representing a consensus developed in meetings from 2019-2020, is presented here. The proposed measures are diverse, interdisciplinary, and are guided by experience and ongoing implementation and research efforts. Show less
Stroke is a relatively common condition with a large impact on patients’ lives. Rehabilitation treatment aims to support patients in coping with the physical, mental, cognitive and social... Show moreStroke is a relatively common condition with a large impact on patients’ lives. Rehabilitation treatment aims to support patients in coping with the physical, mental, cognitive and social consequences of stroke. Recently, there is an increasing interest in the application of digital technologies (eRehabilitation) in healthcare in general, including in stroke rehabilitation. ERehabilitation may include physical and cognitive exercise programs, patient information and education, e-consultations, physical activity tracking and serious gaming, preferably all together in one digital environment.Although there is evidence on the effectiveness and feasibility of eRehabilitation, the uptake of eRehabilitation in specialized stroke rehabilitation facilities has been slow, warranting the need for implementation research. The aim of this thesis was to provide insight in the complex interplay between the effectiveness, the implementation strategy and the context of eRehabilitation after stroke, as delivered in a specialized rehabilitation facility, in order to improve future use of eRehabilitation in specialized stroke rehabilitation facilities. Show less
The aim of this study was (1) to prospectively evaluate the nationwide implementation of the ESPGHAN-guidelines for the diagnosis of celiac disease (CD), (2) to investigate the incidence and... Show moreThe aim of this study was (1) to prospectively evaluate the nationwide implementation of the ESPGHAN-guidelines for the diagnosis of celiac disease (CD), (2) to investigate the incidence and clinical presentation of diagnosed childhood CD (0-14 years) in the Netherlands, and (3) to compare the findings with national survey data from 1975 to 1990 and 1993 to 2000 using the same approach. From 2010 to 2013, all practicing paediatricians were invited to report new celiac diagnoses to the Dutch Pediatric Surveillance Unit. Data were collected via questionnaires. A total of 1107 children with newly diagnosed CD were reported (mean age, 5.8 years; range, 10 months-14.9 years; 60.5% female). After the introduction of the non-biopsy approach in 2012, 75% of the diagnoses were made according to the guideline with a significant decrease of 46.3% in biopsies. The use of EMA and HLA-typing significantly increased with 25.8% and 62.1%, respectively. The overall incidence rate of childhood CD was 8.8-fold higher than in 1975-1990 and 2.0-fold higher than in 1993-2000. During the study period, the prevalence of diagnosed CD was 0.14%, far below 0.7% of CD identified via screening in the general Dutch paediatric population. Clinical presentation has shifted towards less severe and extra-intestinal symptoms.Conclusion: ESPGHAN guidelines for CD diagnosis in children were effectively and rapidly implemented in the Netherlands. Incidence of diagnosed CD among children is still significantly rising with a continuous changing clinical presentation. Despite the increasing incidence of diagnoses, significant underdiagnosis still remains.What is Known:Since 2000 the incidence of diagnosed childhood CD in the Netherlands has shown a steady rise.The rise in incidence has been accompanied by a changing clinical presentation at diagnosis.What is New:The ESPGHAN guidelines 2012 for CD diagnosis were effectively and rapidly implemented in the Netherlands.The incidence of diagnosed childhood CD in the Netherlands has continued to rise significantly during the reported period. Show less
The aim of this dissertation is to enhance understanding of care use by children known to have or be at risk of complex problems (CP). Children with CP have a greater need for health services than... Show moreThe aim of this dissertation is to enhance understanding of care use by children known to have or be at risk of complex problems (CP). Children with CP have a greater need for health services than the average child because their chronic physical, behavioral or emotional conditions interact and enhance their vulnerability. Worldwide, around 5% of children suffer from complex problems. They typically have high levels of care consumption, especially psychosocial care.In our studies we address factors impacting care use of children with CP, its intensity, and barriers to care. We found several risk factors for identification of these children: child’s age, adverse life events, child’s psychosocial problems, and parenting concerns. We also look at care use of multiproblem families, involving a subgroup of these children with the highest level of CP. Finally, we studied professionals to understand the challenges they meet in organizing care for these children when using Wraparound Care. This care-coordination method is used in the Netherlands as the backbone of treatment for children with CP. Further development of Wraparound Care and greater understanding of the factors impacting care use by children with CP will help to make their pathway to care more efficient and effective. Show less
Objective: Healthcare providers' (HCPs) perceptions of smokers' responsibility for smoking may affect implementation of smoking cessation care (SCC), but are understudied. This study examined Dutch... Show moreObjective: Healthcare providers' (HCPs) perceptions of smokers' responsibility for smoking may affect implementation of smoking cessation care (SCC), but are understudied. This study examined Dutch HCPs' perceptions of smokers' responsibility for smoking, and how many and which subgroups exist with regard to these perceptions.Methods: Observational cross-sectional study among physicians and other HCPs (N = 570). Latent class analysis was used to analyse data.Results: Results showed two latent classes of HCPs: a majority (77 %) that appeared to hold smokers themselves more accountable for their smoking, and a minority (23 %) that seemed more inclined to believe that people smoked as a consequence of factors such as addiction, and smoking initiation when people were young and could not foresee consequences. The two-class model showed excellent certainty in classification. Class membership was associated with age, working experience, and smoking status. The majority class experienced more barriers to SCC than the minority class and provided SCC tasks to fewer patients.Conclusions: HCPs' perceptions of smokers' responsibility for smoking relate to HCP background characteristics, barriers to SCC and implementation of SCC.Practice Implications: New approaches to improving SCC might be needed that take HCP's perceptions of smokers' responsibility into account. (C) 2020 The Author(s). Published by Elsevier B.V. Show less
