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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]

Background: A high percentage of people dying at home, and a low percentage of people being admitted to hospital and dying there are regarded as indicators of appropriate care at the end of life. However, performance standards for these quality indicators are often lacking, which makes it difficult to state whether an indicator score falls between the ranges of good or poor quality care. The aim of this study was to assess quality indicators concerning place of death and hospital care utilization in people with diseases relevant for palliative care, and to establish best practice performance standards based on indicator scores in 31 regions in the Netherlands. Methods: A retrospective nationwide population-based observational study was conducted, using routinely collected administrative data concerning persons who died in 2017 in the Netherlands with underlying causes relevant for palliative care (N = 109,707). Data from four registries were linked for analysis. Scores on eight quality indicators concerning place of death and hospital care utilization were calculated, and compared across 31 healthcare insurance regions to establish relative benchmarks. Results: On average, 36.4% of the study population died at home (range between regions 30.5%-42.6%) and 20.4% in hospital (range 16.6%-25.5%). Roughly half of the population who received hospital care at any time in the last year of life were found to (also) receive hospital care in the last month of life. In the last month, 32.0% of the study population were admitted to hospital (range 29.4-36.4%), 5.3% to an Intensive Care Unit (range 3.2-6.9%) and 23.9% visited an Emergency Department (range 21.0-27.4%). In the same time period, less than 1% of the study population was resuscitated in hospital or received tube or intravenous feeding in hospital. Conclusions: The variation between regions points towards opportunities for practice improvement. The best practice performance standards as set in this study serve as ambitious but attainable targets for those regions that currently do not meet the standards. Policymakers, healthcare providers and researchers can use the suggested performance standards to further analyze causes of variance between regions and develop and test interventions that can improve practice. [ABSTRACT FROM AUTHOR]

Background: The growing volume of health data provides new opportunities for medical research. By using existing registries, large populations can be studied over a long period of time. Patient-level linkage of registries leads to even more detailed and extended information per patient, but brings challenges regarding responsibilities, privacy and security, and quality of data linkage. In this paper we describe how we dealt with these challenges when creating the Primary Secondary Cancer Care Registry (PSCCR)- Breast Cancer.Methods: The PSCCR - Breast Cancer was created by linking two existing registries containing data on 1) diagnosis, tumour and treatment characteristics of all Dutch breast cancer patients (NCR), and 2) consultations and diagnoses from primary care electronic health records of about 10% of Dutch GP practices (Nivel-PCD). The existing registry governance structures and privacy regulations were incorporated in those of the new registry. Privacy and security risks were reassessed. Data were restricted to females and linked using postal code and date of birth. The breast cancer diagnosis was verified in both registries and for a subsample of 44 patients with the GP as well.Results: A collaboration agreement was signed in which the organisations retained data responsibility and accountability for 'their' registry. A Trusted Third Party performed the record linkage. Ten percent of the patients with breast cancer could be linked to the primary care registry, as was expected based on the coverage of Nivel-PCD, and finally 7 % could be included. The breast cancer diagnosis was verified by the GP in 42 of the 44 patients.Conclusions: We developed and validated a procedure for patient-level linkage of health data registries without a unique identifier, while preserving the integrity and privacy of the original registries. The method described may help researchers wishing to link existing health data registries. [ABSTRACT FROM AUTHOR]

Background: A high percentage of people dying at home, and a low percentage of people being admitted to hospital and dying there are regarded as indicators of appropriate care at the end of life. However, performance standards for these quality indicators are often lacking, which makes it difficult to state whether an indicator score falls between the ranges of good or poor quality care. The aim of this study was to assess quality indicators concerning place of death and hospital care utilization in people with diseases relevant for palliative care, and to establish best practice performance standards based on indicator scores in 31 regions in the Netherlands. Methods: A retrospective nationwide population-based observational study was conducted, using routinely collected administrative data concerning persons who died in 2017 in the Netherlands with underlying causes relevant for palliative care (N = 109,707). Data from four registries were linked for analysis. Scores on eight quality indicators concerning place of death and hospital care utilization were calculated, and compared across 31 healthcare insurance regions to establish relative benchmarks. Results: On average, 36.4% of the study population died at home (range between regions 30.5%-42.6%) and 20.4% in hospital (range 16.6%-25.5%). Roughly half of the population who received hospital care at any time in the last year of life were found to (also) receive hospital care in the last month of life. In the last month, 32.0% of the study population were admitted to hospital (range 29.4-36.4%), 5.3% to an Intensive Care Unit (range 3.2-6.9%) and 23.9% visited an Emergency Department (range 21.0-27.4%). In the same time period, less than 1% of the study population was resuscitated in hospital or received tube or intravenous feeding in hospital. Conclusions: The variation between regions points towards opportunities for practice improvement. The best practice performance standards as set in this study serve as ambitious but attainable targets for those regions that currently do not meet the standards. Policymakers, healthcare providers and researchers can use the suggested performance standards to further analyze causes of variance between regions and develop and test interventions that can improve practice. [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]

Purpose To examine health care utilization of people with multiple chronic diseases in The Netherlands compared to people with a single chronic disease, and to identify subgroups of multimorbid patients according to health care utilization. Methods All patients diagnosed with one or more chronic diseases in 2008–2009 (N = 54,051) were selected from the nationwide NIVEL Primary Care Database, and data on their GP contacts and medication in 2010 were retrieved. Data on hospital admissions, household size and income were added. Chi-square-tests and multivariate regression analyses were performed to analyze differences between multimorbid patients and patients with a single chronic disease, and between subgroups of multimorbid patients derived from cluster analysis. Results Multimorbid patients (37% of all patients) had more GP contacts, prescribed medications, and hospital admissions (all p < .0001) than patients with a single chronic disease. The largest cluster of multimorbid patients (57%) had a relatively low level of health care utilization, a smaller cluster (36%) had higher levels of health care utilization, and 7.6% of patients were heavy health care users ( p < .0001 for all variables). The latter were older, more often female, had a lower income, lived in a smaller household, had more chronic diseases, and more often had specific chronic diseases such as COPD, diabetes and heart failure. Conclusions The majority of multimorbid patients have only slightly higher health care utilization than patients with a single chronic disease. Extensive health care utilization among multimorbid patients seems to be related to patient characteristics as well as chronic disease numbers and patterns. [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]

Background: The number of cancer survivors is steadily increasing and these patients often experience long-lasting health problems. To make care for cancer survivors sustainable for the future, it would be relevant to put the effects of cancer in this phase into perspective. Therefore, the authors compared health-related quality of life (HRQOL) and health care use among cancer survivors with that of patients with chronic diseases.Methods: Patients diagnosed at age >18 years with a cancer with a 5-year survival rate > 20% and no distant metastases at the time of diagnosis and patients aged >18 years with physician-diagnosed somatic chronic diseases without cancer were sent a questionnaire. HRQOL was measured with the RAND-36, a measure of HRQOL. Self-reported health care use was measured for general practitioner care, specialist care, rehabilitative care, physical therapy, ambulatory mental health care, and occupational health care.Results: A total of 601 cancer survivors and 1052 patients with chronic diseases without cancer were included in the current study. Multimorbidity was observed in 63% of the cancer survivors and 61% of the patients with chronic diseases. The HRQOL of the cancer survivors was significantly better than that of patients with chronic diseases after adjustment for age and sex. For the mental functioning subscale, no significant differences were found between the 2 groups. Cancer survivors were found to be less likely to have visited a general practitioner or cardiologist compared with patients with chronic diseases.Conclusions: When considering physical HRQOL and health care use, cancer survivors appear to fare better than the average patient with chronic diseases. No difference in mental functioning was observed in the current study. [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]

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]

Abstract: Objective: Cognitive behaviour therapy (CBT) can significantly reduce fatigue in chronic fatigue syndrome (CFS), but little is known about the process of change taking place during CBT. Based on a recent treatment model (Wiborg et al. J Psych Res 2012), we examined how (changes in) cognitions and behaviour are related to the decrease in fatigue. Methods: We included 183 patients meeting the US Centers for Disease Control criteria for CFS, aged 18 to 65years, starting CBT. We measured fatigue and possible process variables before treatment; after 6, 12 and 18weeks; and after treatment. Possible process variables were sense of control over fatigue, focusing on symptoms, self-reported physical functioning, perceived physical activity and objective (actigraphic) physical activity. We built multiple regression models, explaining levels of fatigue during therapy by (changes in) proposed process variables. Results: We observed large individual variation in the patterns of change in fatigue and process variables during CBT for CFS. Increases in the sense of control over fatigue, perceived activity and self-reported physical functioning, and decreases in focusing on symptoms explained 20 to 46% of the variance in fatigue. An increase in objective activity was not a process variable. Conclusion: A change in cognitive factors seems to be related to the decrease in fatigue during CBT for CFS. The pattern of change varies considerably between patients, but changes in process variables and fatigue occur mostly in the same period. [Copyright &y& Elsevier]

Abstract: Cognitive behaviour therapy (CBT) for chronic fatigue syndrome (CFS) can reduce fatigue and impairment. Recently, it was found that changes in fatigue-perpetuating factors, i.e. focusing on symptoms, control over fatigue, perceived activity and physical functioning, are associated with and explain up to half of the variance in fatigue during CBT for CFS. The therapy relationship, e.g. outcome expectations and working alliance, may also contribute to treatment outcome. We aimed to examine the role of the therapy relationship in CBT and determine whether it exerts its effect independently of changes in fatigue-perpetuating factors. We used a cohort of 217 CFS patients in which the pattern of change in fatigue-perpetuating factors was examined previously. Fatigue, therapy relationship and fatigue-perpetuating factors were measured at the start of therapy, three times during CBT and at the end of therapy. Baseline outcome expectations and agreement about the content of therapy predicted post therapy fatigue. A large part of the variance in post-treatment fatigue (25%) was jointly explained by outcome expectations, working alliance and changes in fatigue-perpetuating factors. From this, we conclude that positive outcome expectations and task agreement seem to facilitate changes in fatigue-perpetuating factors during CBT for CFS. It is therefore important to establish a positive therapy relationship early in therapy. [Copyright &y& Elsevier]

Abstract: Objective: To examine the relationship between a history of childhood maltreatment and the treatment response to cognitive behavior therapy for chronic fatigue syndrome (CFS). Methods: A cohort study in a tertiary care clinic with a referred sample of 216 adult patients meeting the Centers for Disease Control and Prevention criteria for CFS, and starting cognitive behavior therapy. Main outcome measures changes between pre- and post therapy in fatigue (Checklist Individual Strength fatigue subscale), disabilities (Sickness Impact Profile total score), physical functioning (short form 36 health survey subscale) and psychological distress (Symptom checklist 90 total score). Results: At baseline, patients with a history of childhood maltreatment had significantly more limitations and a higher level of psychological distress, but were not more severely fatigued. Change scores on the outcome measures after cognitive behavior therapy did not differ significantly between patients with or without a history of childhood maltreatment, or between the different types of childhood maltreatment. However, patients with a history of childhood maltreatment still experienced more limitations and a higher level of psychological distress after CBT. Conclusions: A history of childhood maltreatment was not related to the treatment response of cognitive behavior therapy for CFS. In patients with a history of childhood maltreatment CFS symptoms can be treated with CBT just as well as those without. [Copyright &y& Elsevier]

Purpose: Insights into the severity of co-existing symptoms can help in identifying breast cancer survivors in need of symptom management. We aimed to identify subgroups of breast cancer survivors based on patterns of symptom severity, and characteristics associated with these subgroups.Methods: We selected surgically treated stage I-III breast cancer survivors 1-5 years post-diagnosis from the Netherlands Cancer Registry (N = 876). We assessed experienced severity of fatigue, nausea, pain, dyspnea, insomnia, appetite, constipation, diarrhea, and emotional and cognitive symptoms through the EORTC-QLQ-C30 Quality of Life Questionnaire on a scale of 0-100. We determined subgroups of survivors using latent class cluster analyses (LCA) based on severity of co-existing symptoms and compared their mean severity to the age-matched female reference population to interpret clinical relevance. We assessed subgroup characteristics by multinomial logistic regression analyses.Results: From 404 respondents (46%), three subgroups of survivors with distinct symptom severity were identified: low severity (n = 116, 28.7%), intermediate severity (n = 224, 55.4%), and high severity (n = 59, 14.6%). The low subgroup reported lower symptom severity than the general population; the intermediate subgroup reported a similar symptom severity, although scores for fatigue, insomnia, and cognitive symptoms were worse (small-medium clinical relevance). The high subgroup had worse symptom severity (medium-large clinical relevance). Compared to the intermediate subgroup, one (RRR: 2.75; CI: 1.22-6.19; p = 0.015) or more (RRR: 9.19; CI: 3.70-22.8; p =  < 0.001) comorbidities were significantly associated with the high subgroup. We found no associated treatment characteristics.Conclusion: We identified distinct subgroups of breast cancer survivors based on symptom severity, underlining the relevance of further exploring personalized follow-up strategies. [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]