Search

There has been growing interest in the use of real-world data (RWD) to address clinically and policy-relevant (research) questions that cannot be answered with data from randomized controlled trials (RCTs) alone. This is, for example, the case in rare malignancies such as sarcomas as limited patient numbers pose challenges in conducting RCTs within feasible timeliness, a manageable number of collaborators, and statistical power. This narrative review explores the potential of RWD to generate real-world evidence (RWE) in sarcoma research, elucidating its application across different phases of the patient journey, from prediagnosis to the follow-up/survivorship phase. For instance, examining electronic health records (EHRs) from general practitioners (GPs) enables the exploration of consultation frequency and presenting symptoms in primary care before a sarcoma diagnosis. In addition, alternative study designs that integrate RWD with well-designed observational RCTs may offer relevant information on the effectiveness of clinical treatments. As, especially in cases of ultrarare sarcomas, it can be an extreme challenge to perform well-powered randomized prospective studies. Therefore, it is crucial to support the adaptation of novel study designs. Regarding the follow-up/survivorship phase, examining EHR from primary and secondary care can provide valuable insights into identifying the short- and long-term effects of treatment over an extended follow-up period. The utilization of RWD also comes with several challenges, including issues related to data quality and privacy, as described in this study. Notwithstanding these challenges, this study underscores the potential of RWD to bridge, at least partially, gaps between evidence and practice and holds promise in contributing to the improvement of sarcoma care. Exploring RWD potential in sarcoma research: bridging evidence gaps, despite challenges, for improved care. [ABSTRACT FROM AUTHOR]

The number of breast cancer survivors increases, but information about long-term adverse health effects in breast cancer survivors is sparse. We aimed to get an overview of the health effects for which survivors visit their general practitioner up to 14 years after diagnosis. We retrieved data on 11,671 women diagnosed with breast cancer in 2000–2016 and 23,242 age and sex matched controls from the PSCCR-Breast Cancer, a database containing data about cancer diagnosis, treatment and primary healthcare. We built Cox regression models for 685 health effects, with time until the health effect as the outcome and survivor/control and cancer treatment as predictors. Models were built separately for four age groups (aged 18/44, 45/59, 60/74 and 75/89) and two follow-up periods (1/4 and 5/14 years after diagnosis). 229 health effects occurred statistically significantly more often in survivors than in controls (p < 0.05). Health effects varied by age, time since diagnosis and treatment, but coughing, respiratory and urinary infections, fatigue, sleep problems, osteoporosis and lymphedema were statistically significantly increased in breast cancer survivors. Osteoporosis and chest symptoms were associated with hormone therapy; respiratory and skin infections with chemotherapy and lymphedema and skin infections with axillary dissection. Breast cancer survivors may experience numerous adverse health effects up to 14 years after diagnosis. Insight in individual risks may assist healthcare professionals in managing patient expectations and improve monitoring, detection and treatment of adverse health effects. • Breast cancer survivors experience adverse effects up to 14 years after diagnosis. • Most common were respiratory/urinary infections, fatigue and sleep problems. • Adverse effects vary by age, time since diagnosis and treatment. • Our results may aid monitoring, detection and treatment of adverse effects. [ABSTRACT FROM AUTHOR]

Objectives To evaluate whether the prevalence of health problems in cohabiting partners of people with dementia differs between the year before and the year after 3 transitions: the diagnosis of dementia, institutionalization, and the death of the person with dementia. Methods Individuals with dementia and their partners were identified on the basis of data in the electronic health records (EHRs) of 451 Dutch general practices. EHRs were also the data source on their health problems, which were linked to the Dutch population registry and health administration data with demographic characteristics, date of institutionalization, and date of death. Differences in the prevalence of 16 groups of health problems and of specific health problems in partners during the year before and the year after the 3 transitions were examined using a generalized estimating equation. Results About 1,110 partners of persons with dementia were identified. Problems related to the illness and/or loss of the person with dementia were significantly more prevalent in the year after the dementia diagnosis (32% vs. 17%) and in the year after the death of the person with dementia (59% vs. 41%) than in the years before. Unspecified health problems were more prevalent in the year after the diagnosis than in the year before (30% vs. 22%). After institutionalization, an increase was found in digestive problems and urological problems (30% vs. 18% and 24% vs. 17%). Discussion Transitions during the dementia care trajectory, namely, the diagnosis, institutionalization, and death of the person with dementia, significantly affect the cohabiting partner's health. [ABSTRACT FROM AUTHOR]

Background: Guideline adherence remains a challenge in clinical practice, despite guidelines' ascribed potential to improve patient outcomes. We studied the level of adherence to recommendations from Dutch national cancer treatment guidelines, and the influence of general and cancer-specific guideline characteristics on adherence. Methods: Based on data from a national cancer registry, adherence was evaluated for 15 treatment recommendations for breast, colorectal, prostate and lung cancer, and melanoma. Recommendations were selected by representatives of the medical specialist associations responsible for developing and implementing the guidelines. We used multivariable multilevel analysis to calculate mean adherence and variation between individual hospitals. Results: Mean adherence to the different treatment recommendations ranged from 40 to 99%. Adherence differed only slightly between older and newer guidelines and between recommendations with low, moderate or high levels of evidence (range 79--84% and 77--91%, respectively), while adherence differed more between recommendations for different cancer types (range 54--99%), different treatment modalities (adherence ranged from 40 to 92%) or recommendations that advised against or recommended in favour of particular treatment (adherence ranged from 75 to 98%). Conclusion: We found significant variation in adherence between different cancer treatment guidelines. While some guideline characteristics that seem to explain this variation may be considered difficult to modify, the potential for variance across cancer types and treatment modalities suggests that adherence could be further improved. At the same time, these results warrant tailored strategies for the improvement of adherence to clinical practice guidelines. [ABSTRACT FROM AUTHOR]

Many children receive attention-deficit hyperactivity disorder (ADHD) medication, but factors that determine medication prescription are largely unknown. This study aimed to determine the relative impact of factors on the child, family and general practitioner (GP) practice level on ADHD medication prescription. We included 1259 Dutch children aged 6–18 years with a diagnostic code of ADHD or related behavioural problems (ICPC codes P20-P22) in NIVEL primary care database. Using multilevel analyses, we examined predictors of ADHD medication prescription. Children diagnosed as ‘hyperactive’ were 16 times more likely to be prescribed ADHD medication than those with ‘behavioural concerns’. Children with a parent or sibling receiving ADHD medication were three to four times more likely to be prescribed ADHD medication themselves. Children from GP practices with a high percentage of children with ADHD were twice as likely to be prescribed ADHD medication. Concluding, factors on the individual, family and GP practice level determine ADHD medication prescription. Future research into the decision-making process for ADHD medication is warranted. [ABSTRACT FROM AUTHOR]

Background: Children diagnosed with cancer often require extensive care for medical, psychosocial and educational problems during and after therapy. Part of this care is provided by family physicians and non-cancer specialists, but their involvement in the first years after diagnosis has barely been studied. Studying non-oncology physician visits may provide insight into the roles of different health care providers. Methods: We included 757 children diagnosed with cancer under age 15 between 1991 and 2001 from a Canadian provincial registry, and matched each to 10 controls of the same birth year and sex. We determined the number of family physician and non-cancer specialist visits in the 5 years after diagnosis (for patients) or inclusion (for controls) using data from the provincial health insurance plan. Results: In the first year after diagnosis, almost all patients visited both a family physician and non-cancer specialist. Although after 5 years percentages decreased to 85 and 76 %, respectively, these were still significantly higher than in controls. In the first year after diagnosis, both family physicians and non-cancer specialists were often consulted for neoplasms (62 and 90 %, respectively) and to discuss results of lab tests. In addition, family physicians were often consulted for general symptoms and non-cancer specialists for nervous system problems and complications of medical care. Conclusions: Family physicians and non-cancer specialists are highly involved in the care for children with cancer in the first years after diagnosis, including for health problems related to cancer or its treatment. This necessitates good communication among all physicians. [ABSTRACT FROM AUTHOR]

Purpose To examine health care utilization of people with multiple chronic diseases in The Netherlands compared to people with one chronic disease, and to identify different subgroups of multimorbid patients based on differences in health care utilization. Methods All patients diagnosed with one or more chronic diseases in 2008–2009 ( N = 17,443) were selected from the nationwide NIVEL Primary Care Database, and data on their GP contacts were included. Data on hospital admissions (from the Dutch Hospital Data database) and household size and income (from the Integral Household Incomes database 2010) were added. Chi-square-tests and multivariate regression analyses were performed to test for differences between multimorbid patients and patients with one chronic disease, and between subgroups of multimorbid patients derived from cluster analysis. Results Multimorbid patients (40% of the total sample) had more GP contacts, prescribed medications, and hospital admissions (all p < .0001) than patients with one chronic disease. The largest cluster of multimorbid patients (80%) was characterized by a relatively low level of health care utilization. Two smaller clusters comprised patients with a (very) high level of health care utilization — these people were mainly older, more often female, had a lower income, a smaller household size, and suffered from more chronic diseases. Conclusions Among the vast majority of multimorbid patients health care utilization is only slightly higher compared to patients with one chronic disease. Extensive health care utilization among people with multimorbidity seems to be related to patient characteristics as well as illness characteristics. [ABSTRACT FROM AUTHOR]

COVID-19 restrictions have resulted in major changes in healthcare, including the prescribing of antibiotics. We aimed to monitor antibiotic prescribing trends during the COVID-19 pandemic in Dutch general practice, both during daytime and out-of-hours (OOH). Routine care data were used from 379 daytime general practices (DGP) and 28 OOH-services over the period 2019–2021. Per week, we analyzed prescription rates per 100,000 inhabitants, overall, for respiratory and urinary tract infections (RTIs and UTIs) specifically and within age categories. We assessed changes in antibiotic prescribing during different phases of the pandemic using interrupted time series analyses. Both at DGPs and OOH-services significantly fewer antibiotics were prescribed during the COVID-19 pandemic after government measures became effective. Furthermore, the number of contacts decreased in both settings. When restrictions were revoked in 2021 prescription rates increased both at DGP and OOH-services, returning to pre-pandemic levels at OOH-services, but not in DGP. Changes in antibiotic prescribing rates were prominent for RTIs and among children up to 11 years old, but not for UTIs. To conclude, while antibiotic prescribing decreased during the first year of the COVID-19 pandemic both in daytime and out-of-hours, the pandemic does not seem to have a lasting effect on antibiotic prescribing. [ABSTRACT FROM AUTHOR]

Background The number of cancer survivors is increasing due to improved treatments. Consequently, general practitioners will treat more and more cancer survivors in the upcoming years. Only little is known about the care needs of these survivors and guidelines to support general practitioners in their treatment of these patients are lacking. The aim of this study was to gain insight in the health care needs of cancer survivors in general practice. Methods A systematic review on cancer survivors' general practice needs was conducted in PubMed, Embase and the Cochrane Library of Systematic Reviews. Eligible studies could be qualitative or quantitative studies examining cancer survivors' needs in general practice. Studies of adult survivors, with any cancer type, considered free of active disease and no longer receiving active treatment, were included. For each study a quality score was given using a form developed specifically for this study. Statements about survivors' general practice needs were collected and corresponding themes were grouped. Results Fifteen studies were included, of which twelve were qualitative. Most mentioned general practice needs were psychosocial needs, mainly being support received form the GP, followed by a need for help with medical issues, and a need for information on cancer, recovery, late treatment effects and on adjusting to life after treatment. Conclusions Cancer survivors have different types of general practice needs that are currently not or insufficiently met. This review provides a starting point for the development of new guidelines for general practitioners to support in cancer survivorship. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision making is not always commonplace in advanced colorectal or lung cancer care. Decision aids (DAs) might be helpful. This review aimed (a) to provide an overview of DAs for patients with advanced colorectal or lung cancer and assess their availability; and (b) to assess their effectiveness if possible. Methods: A systematic literature search (PubMed/EMBASE/PsycINFO/CINAHL) and Internet and expert searches were carried out to identify relevant DAs. Data from the DAs included were extracted and the quality of studies, evidence (Grading of Recommendations Assessment, Development and Evaluation) and effectiveness (International Patient Decision Aid Standards) of DAs were determined. Results: Ten of the 12 DAs included (four colorectal cancer, four lung cancer and four generic) are still available. Most (9/12) were applicable throughout the disease pathway and usable for all decisions, or to the decision for supportive care with/without anti‐cancer therapy. Seven studies tested effectiveness. Effects on patient outcomes varied, but were generally weakly positive (e.g., DAs improved patient satisfaction) with low evidence. Study quality was fair to good. Conclusion: There is a lack of readily available DAs that have been demonstrated to be effective in advanced colorectal or lung cancer. Rigorous testing of the effects of currently available and future DAs, to improve patient outcomes, is urgently needed. [ABSTRACT FROM AUTHOR]

A response by the author of the article "Diagnostic Pathways for Interstitial Lung Disease in Primary Care" is presented.

Many children receive attention-deficit hyperactivity disorder (ADHD) medication, but factors that determine medication prescription are largely unknown. This study aimed to determine the relative impact of factors on the child, family and general practitioner (GP) practice level on ADHD medication prescription. We included 1259 Dutch children aged 6-18 years with a diagnostic code of ADHD or related behavioural problems (ICPC codes P20-P22) in NIVEL primary care database. Using multilevel analyses, we examined predictors of ADHD medication prescription. Children diagnosed as 'hyperactive' were 16 times more likely to be prescribed ADHD medication than those with 'behavioural concerns'. Children with a parent or sibling receiving ADHD medication were three to four times more likely to be prescribed ADHD medication themselves. Children from GP practices with a high percentage of children with ADHD were twice as likely to be prescribed ADHD medication. Concluding, factors on the individual, family and GP practice level determine ADHD medication prescription. Future research into the decision-making process for ADHD medication is warranted.