General practices' experiences with patients' web-based access to medical records:Survey study

Background: Patients’ web-based access to their medical records is expected to promote their role and responsibility in managingtheir own health and treatments and supporting shared decision-making. As of July 2020, general practices in the Netherlandsare legally obliged to provide their patients access to their electronic medical records. Web-based access provision is facilitatedand stimulated through a national support program named OPEN.Objective: We aimed to investigate general practice staff experiences with providing web-based access; investigate its impacton patient consultations, administrative actions, and patient inquiries; and investigate how it affects routine general practiceworkflow processes.Methods: In October 2021, a total of 3813 general practices in the Netherlands were invited to complete a web-based surveythat included questions regarding their experiences with the provision of web-based access to medical records and how it affectsroutine general practice workflow. Responses of general practices that started providing web-based access before 2020, in 2020,or in 2021 were analyzed to identify trends.Results: Of 3813 invited general practices, 523 (13.72%) completed the survey. Approximately all responding general practices(487/523, 93.1%) indicated that they provide web-based access. Experiences with patients’ web-based access were diverse, with36.9% (178/482) primarily positive, 8.1% (39/482) primarily negative, 42.3% (204/482) neutral, and 12.7% (61/482) could not(yet) indicate how they experienced web-based access. Of the total, two-thirds (311/473, 65.8%) reported an increase ine-consultations and a similar percentage (302/474, 63.7%) indicated an increase in administrative actions associated with web-basedaccess provision. A small proportion of the practices (≤10%) experienced a decrease in patient contacts. Earlier adoption ofweb-based access was associated with a more positive attitude toward web-based access and more positive experienced effectsrelated to patient contacts and general practice workflow.Conclusions: The surveyed general practices mainly experienced providing web-based access as either neutral or mostly positive,despite an increased number of patient contacts and administrative burden that were associated with its adoption. Periodicmonitoring of experiences is needed to understand the temporal or structural nature of both the intended and unintended effectsof patients’ web-based access to medical records for general practices and their staff

Use of E-health in Dutch general practice during the COVID-19 pandemic

The COVID-19 pandemic has forced general practices to search for possibilities to provide healthcare remotely (e.g., e-health). In this study, the impact of the pandemic on the use of e-health in general practices in the Netherlands was investigated. In addition, the intention of practices to continue using e-health more intensively and differences in the use of e-health between practice types were investigated. For this purpose, web surveys were sent to general practices in April and July 2020. Descriptive data analysis was performed and differences in the use of e-health between practice types were tested using one-way ANOVA. Response rates were 34% (n = 1433) in April and 17% (n = 719) in July. The pandemic invoked an increased use of several (new) e-health applications. A minority of practices indicated the intention to maintain this increased use. In addition, small differences in the use of e-health between the different practice types were found. This study showed that although there was an increased uptake of e-health in Dutch general practice during the COVID-19 pandemic, only a minority of practices intends to maintain this increased use in the future. This may point towards a temporary uptake of digital healthcare delivery rather than accelerated implementation of digital processes

"Get used to the fact that some of the care is really going to take place in a different way":General practitioners' experiences with E-health during the COVID-19 pandemic

The first outbreak of the COVID-19 pandemic led to the introduction of the more extensive use of e-health in Dutch general practices. The objective of this study was to investigate the experiences of general practitioners (GPs) regarding this change. In addition, the necessary conditions for e-health technology to be of added value to general practices were explored. In April 2020, 30 GPs were recruited for in-depth interviews via a web survey which contained questions regarding the use of e-health during the first wave of the pandemic. While most GPs intend to keep using e-health applications more extensively than before the pandemic, the actual use of e-health depends on several factors, including the characteristics of the application’s users. The following conditions for successful and sustainable implementation of e-health were identified: (1) integration of e-health technology in the organization of GP care, (2) sufficient user-friendliness of applications as well as digital skills of professionals and patients, and (3) adequate technological and financial support of e-health services. GPs clearly recognize the benefits of using e-health, and most GPs intend to keep using e-health applications more extensively than before the pandemic. However, improvements are needed to allow widespread and sustainable adoption of e-health technology in general practices

Psychosocial functioning of adult siblings of Dutch very long-term survivors of childhood cancer:DCCSS-LATER 2 psycho-oncology study

Objective: To describe psychosocial outcomes among adult siblings of very long-term childhood cancer survivors (CCS), to compare these outcomes to reference populations and to identify factors associated with siblings' psychosocial outcomes. Methods: Siblings of survivors (diagnosed &lt;18 years old, between 1963 and 2001, &gt;5 years since diagnosis) of the Dutch Childhood Cancer Survivor Study DCCSS-LATER cohort were invited to complete questionnaires on HRQoL (TNO-AZL Questionnaire for Adult's HRQoL), anxiety/depression (Hospital Anxiety and Depression Scale), post-traumatic stress (Self-Rating Scale for Post-traumatic Stress Disorder), self-esteem (Rosenberg Self-Esteem Scale) and benefit and burden (Benefit and Burden Scale for Children). Outcomes were compared to a reference group if available, using Mann-Whitney U and chi-Square tests. Associations of siblings' sociodemographic and CCS’ cancer-related characteristics with the outcomes were assessed with mixed model analysis. Results: Five hundred five siblings (response rate 34%, 64% female, mean age 37.5, mean time since diagnosis 29.5) of 412 CCS participated. Siblings had comparable HRQoL, anxiety and self-esteem to references with no or small differences (r = 0.08−0.15, p &lt; 0.05) and less depression. Proportions of symptomatic PTSD were very small (0.4%−0.6%). Effect sizes of associations of siblings' sociodemographic and CCS cancer-related characteristics were mostly small to medium (β = 0.19−0.67, p &lt; 0.05) and no clear trend was found in the studied associated factors for worse outcomes. Conclusions: On the very long-term, siblings do not have impaired psychosocial functioning compared to references. Cancer-related factors seem not to impact siblings' psychosocial functioning. Early support and education remain essential to prevent long-term consequences.</p

Diagnostic tools for early detection of cardiac dysfunction in childhood cancer survivors:Methodological aspects of the Dutch late effects after childhood cancer (LATER) cardiology study

Background: Cancer therapy-related cardiac dysfunction and heart failure are major problems in long-term childhood cancer survivors (CCS). We hypothesize that assessment of more sensitive echo- and electrocardiographic measurements, and/or biomarkers will allow for improved recognition of patients with cardiac dysfunction before heart failure develops, and may also identify patients at lower risk for heart failure. Objective: To describe the methodology of the Dutch LATER cardiology study (LATER CARD). Methods: The LATER CARD study is a cross-sectional study in long-term CCS treated with (potentially) cardiotoxic cancer therapies and sibling controls. We will evaluate 1) the prevalence and associated (treatment related) risk factors of subclinical cardiac dysfunction in CCS compared to sibling controls and 2) the diagnostic value of echocardiography including myocardial strain and diastolic function parameters, blood biomarkers for cardiomyocyte apoptosis, oxidative stress, cardiac remodeling and inflammation and ECG or combinations of them in the surveillance for cancer therapy-related cardiac dysfunction. From 2017 to 2020 we expect to include 1900 CCS and 500 siblings. Conclusions: The LATER CARD study will provide knowledge on different surveillance modalities for detection of cardiac dysfunction in long-term CCS at risk for heart failure. The results of the study will enable us to improve long-term follow-up surveillance guidelines for CCS at risk for heart failure

Diagnostic tools for early detection of cardiac dysfunction in childhood cancer survivors: Methodological aspects of the Dutch late effects after childhood cancer (LATER) cardiology study

Background: Cancer therapy-related cardiac dysfunction and heart failure are major problems in long-term childhood cancer survivors (CCS). We hypothesize that assessment of more sensitive echo- and electrocardiographic measurements, and/or biomarkers will allow for improved recognition of patients with cardiac dysfunction before heart failure develops, and may also identify patients at lower risk for heart failure. Objective: To describe the methodology of the Dutch LATER cardiology study (LATER CARD). Methods: The LATER CARD study is a cross-sectional study in long-term CCS treated with (potentially) cardiotoxic cancer therapies and sibling controls. We will evaluate 1) the prevalence and associated (treatment related) risk factors of subclinical cardiac dysfunction in CCS compared to sibling controls and 2) the diagnostic value of echocardiography including myocardial strain and diastolic function parameters, blood biomarkers for cardiomyocyte apoptosis, oxidative stress, cardiac remodeling and inflammation and ECG or combinations of them in the surveillance for cancer therapy-related cardiac dysfunction. From 2017 to 2020 we expect to include 1900 CCS and 500 siblings. Conclusions: The LATER CARD study will provide knowledge on different surveillance modalities for detection of cardiac dysfunction in long-term CCS at risk for heart

Diagnostic tools for early detection of cardiac dysfunction in childhood cancer survivors: Methodological aspects of the Dutch late effects after childhood cancer (LATER) cardiology study

Background: Cancer therapy-related cardiac dysfunction and heart failure are major problems in long-term childhood cancer survivors (CCS). We hypothesize that assessment of more sensitive echo- and electrocardiographic measurements, and/or biomarkers will allow for improved recognition of patients with cardiac dysfunction before heart failure develops, and may also identify patients at lower risk for heart failure. Objective: To describe the methodology of the Dutch LATER cardiology study (LATER CARD). Methods: The LATER CARD study is a cross-sectional study in long-term CCS treated with (potentially) cardiotoxic cancer therapies and sibling controls. We will evaluate 1) the prevalence and associated (treatment related) risk factors of subclinical cardiac dysfunction in CCS compared to sibling controls and 2) the diagnostic value of echocardiography including myocardial strain and diastolic function parameters, blood biomarkers for cardiomyocyte apoptosis, oxidative stress, cardiac remodeling and inflammation and ECG or combinations of them in the surveillance for cancer therapy-related cardiac dysfunction. From 2017 to 2020 we expect to include 1900 CCS and 500 siblings. Conclusions: The LATER CARD study will provide knowledge on different surveillance modalities for detection of cardiac dysfunction in long-term CCS at risk for heart failure. The results of the study will enable us to improve long-term follow-up surveillance guidelines for CCS at risk for heart failure

Use of E-health in Dutch general practice during the COVID-19 pandemic

The COVID-19 pandemic has forced general practices to search for possibilities to provide healthcare remotely (e.g., e-health). In this study, the impact of the pandemic on the use of e-health in general practices in the Netherlands was investigated. In addition, the intention of practices to continue using e-health more intensively and differences in the use of e-health between practice types were investigated. For this purpose, web surveys were sent to general practices in April and July 2020. Descriptive data analysis was performed and differences in the use of e-health between practice types were tested using one-way ANOVA. Response rates were 34% (n = 1433) in April and 17% (n = 719) in July. The pandemic invoked an increased use of several (new) e-health applications. A minority of practices indicated the intention to maintain this increased use. In addition, small differences in the use of e-health between the different practice types were found. This study showed that although there was an increased uptake of e-health in Dutch general practice during the COVID-19 pandemic, only a minority of practices intends to maintain this increased use in the future. This may point towards a temporary uptake of digital healthcare delivery rather than accelerated implementation of digital processes

Self-reported outcomes on oral health and oral health-related quality of life in long-term childhood cancer survivors—A DCCSS-LATER 2 Study

Purpose: The present study aimed to determine the prevalence of self-reported oral problems and the oral health–related quality of life (OHRQoL) in childhood cancer survivors (CCS). Methods: Patient and treatment characteristics of CCS have been collected in a cross-sectional study, part of the multidisciplinary DCCSS-LATER 2 Study. To assess self-reported oral health problems and dental problems, CCS filled out the ‘Toegepast-Natuurwetenschappelijk Onderzoek’ (TNO) oral health questionnaire. OHRQoL was assessed by the Dutch version of the Oral Health Impact Profile-14 (OHIP-14). Prevalences were compared with two comparison groups from the literature. Univariable and multivariable analyses were performed. Results: A total of 249 CCS participated in our study. The OHIP-14 total score had a mean value of 1.94 (sd 4.39), with a median score of 0 (range 0–29). The oral problems ‘oral blisters/aphthae’ (25.9%) and ‘bad odor/halitosis’ (23.3%) were significantly more often reported in CCS than in comparison groups (12% and 12%, respectively). The OHIP-14 score was significantly correlated with the number of self-reported oral health problems (r =.333, p<0.0005) and dental problems (r =.392, p <0.0005). In multivariable analysis, CCS with a shorter time since diagnosis (10-19 years vs. ≥30 years) had a 1.47-fold higher risk of ≥1 oral health problem. Conclusion: Though the perceived oral health is relatively good, oral complications following childhood cancer treatment are prevalent in CCS. This underlines that attention to impaired oral health and awareness on this topic is mandatory and regular visits to the dentist should be a part of long-term follow-up care