Objectives: Patients with head and neck cancer (HNC) are often highly affected by disease and treatment, resulting in impaired physical functioning and quality of life. Therefore, evaluation of... Show moreObjectives: Patients with head and neck cancer (HNC) are often highly affected by disease and treatment, resulting in impaired physical functioning and quality of life. Therefore, evaluation of patients' psychosocial and functional outcomes can be facilitated by patient-reported outcome measures (PROMs). By providing the patients' own perspectives, PROMs are crucial to improving patient-centered care. This study aimed to improve understanding of the perceived value of PROMs in HNC care and how to optimize their clinical value based on patients' and multidisciplinary healthcare professionals' (HCPs)Methods: Population-based surveys among patients with HNC through their patient association and among HCPs nationwide through the Dutch Head and Neck Audit.Results: A total of 54 patients and 40 multidisciplinary HCPs from all 14 nationwide HNC centers (100%) responded. For patients, the most important element of patient-reported outcome collection systems was including a call to action for those with worse-than-average scores (28%), whereas clinicians found discussing scores during clinical visits the most important (39%). Although 16% of clinicians found short completion time the most important element, none of the patients selected completion time as most important. Additionally, 17% of patients stated completion time was not an issue, provided clinicians would use the outcomes for clinical purposes.Conclusions: Although patients and clinicians acknowledged the value of patient-reported outcomes, patients would like to be more involved in the clinical implications of their outcomes. Enhancing patients' involvement by a call to action and providing feedback on their scores during outpatient clinic visits may improve the clinical value of PROMs. Show less
Shishkov, S.R.; Tuccillo, L.; Iotova, V.M.; Pivonello, R.; Pelsma, I.C.M.; Pereira, A.M.; ... ; Endo-ERN Pituitary Transition of Care Study Group 2023
Rare endocrine conditions present specific diagnostic and management challenges for healthcare providers, one of which is the understudied transition of care. Despite the need for guidance... Show moreRare endocrine conditions present specific diagnostic and management challenges for healthcare providers, one of which is the understudied transition of care. Despite the need for guidance regarding transition, consensus on structured and protocolled approaches is lacking. Therefore, we aimed to map the current clinical practice and identify unmet needs regarding transition of care for patients with pituitary disease in the reference centers (RCs) of the European Reference Network on Rare Endocrine Conditions (Endo-ERN). A survey-based, cross-sectional study using the EU Survey tool was performed and completed by 46 physicians (n) from 30 RCs (N). Transition is a common practice among RCs (n = 44/46), usually accomplished by a multidisciplinary team meeting (N = 20/30). Criteria for start and end of transition were defined in half of the RCs, with 16.7% of centers providing dissimilar answers. Transition readiness was assessed by >75% of the RCs, mostly by unvalidated means (e.g. subjective opinions, informal consultations). Pituitary-specific transition assessment tool was applied in one RC only. Transition protocols were present in only 9% of RCs, while in many RCs, transition decisions were taken in combined adult-pediatric meetings or based on clinicians' personal judgment. A minority of physicians evaluated the effectiveness of transition-related interventions (n = 11/46) or medical outcomes (n = 8/46). Patient-reported outcome measures were infrequently used (n = 4/46). Identified unmet needs included the development of guidelines (n = 5/46) and EU-wide approach (n = 2/46). This study exemplifies the unmet needs for a structural definition of the transition period and transition management for patients with rare hypothalamic and pituitary conditions from healthcare providers' perspective. Show less
Background: Globally, the burden of cancer on population health is growing. Recent trends such as increasing survival rates have resulted in a need to adapt cancer care to ensure a good care... Show moreBackground: Globally, the burden of cancer on population health is growing. Recent trends such as increasing survival rates have resulted in a need to adapt cancer care to ensure a good care experience and manageable expenditures. eHealth is a promising way to increase the quality of cancer care and support patients and survivors. Objective: The aim of this systematic review was 2-fold. First, we aimed to provide an overview of eHealth interventions and their characteristics for Dutch patients with and survivors of cancer. Second, we aimed to provide an overview of the empirical evidence regarding the impact of eHealth interventions in cancer care on population health, quality of care, and per capita costs (the Triple Aim domains). Methods: The electronic databases Web of Science, PubMed, Cochrane, and Ovid PsycINFO were searched using 3 key search themes: eHealth interventions, cancer care, and the Netherlands. The identified interventions were classified according to predetermined criteria describing the intervention characteristics (eg, type, function, and target population). Their impact was subsequently examined using the Triple Aim framework. Results: A total of 38 interventions were identified. Most of these were web portals or web applications functioning to inform and self-manage, and target psychosocial factors or problems. Few interventions have been tailored to age, disease severity, or gender. The results of this study indicate that eHealth interventions could positively affect sleep quality, fatigue, and physical activity of patients with and survivors of cancer. Inconclusive results were found regarding daily functioning and quality of life, psychological complaints, and psychological adjustment to the disease. Conclusions: eHealth can improve outcomes in the Triple Aim domains, particularly in the population health and quality of care domains. Cancer-related pain and common symptoms of active treatment were not targeted in the included interventions and should receive more attention. Further research is needed to fully understand the impact of eHealth interventions in cancer care on participation, accessibility, and costs. The latter can be examined in economic evaluations by comparing eHealth interventions with care as usual. (JMIR Cancer 2022;8(2):e37093) doi: 10.2196/37093 Show less
Background Indwelling urinary catheters (IDUCs) are associated with complications and early removal is therefore essential. Currently, it is unknown what the effect of a specific removal time is... Show moreBackground Indwelling urinary catheters (IDUCs) are associated with complications and early removal is therefore essential. Currently, it is unknown what the effect of a specific removal time is and what the consequences of this removal time are. Research question To present an overview of the available evidence to determine the effects of three postoperative IDUC removal times (after a certain number of hours, at a specific time of day and flexible removal time) on the development of complications in hospital. Methods PubMed, Medline, Embase, Emcare and Cochrane Central Register of Controlled Trials were searched till 6 June, 2021. Studies were included that described the effect of the removal time in relation to re-catheterisation, urinary tract infections (UTIs), ambulation time, time of first voiding and hospital stay. The quality of the studies was assessed with the Newcastle-Ottawa Scale and the Cochrane Effective Practice and Organisation of Care. A narrative descriptive analysis was performed. PRISMA guidelines were followed in reporting this review. Results Twenty studies were included from which 18 compared removal after a number of hours, 1 reported on a specific removal time and 1 reported on both topics. The results were contradicting regarding the hypothesis that later removal increases the incidence of UTIs. Earlier removal does not lead to a higher re-catheterisation rate while immediate removal is beneficial for reducing the time to first ambulation and shortening the hospital stay. Studies reporting on specific removal times did not find differences in outcomes. No study addressed flexible removal time. Conclusions There is inconclusive evidence that earlier removal results in less UTIs, despite the incidence of UTIs increasing if the IDUC is removed >= 24 h. Immediate or after 1-2 day(s) removal does not lead to higher re-catheterisation rates while immediate removal results in earlier ambulation and shorter length of hospital stay. Implications of key findings Nurses should focus on early IDUC removal while being aware of urinary retention. Show less
Benchmarking is commonly used in many healthcare settings to monitor clinical performance, with the aim of increasing cost-effectiveness and safe care of patients. The funnel plot is a popular tool... Show moreBenchmarking is commonly used in many healthcare settings to monitor clinical performance, with the aim of increasing cost-effectiveness and safe care of patients. The funnel plot is a popular tool in visualizing the performance of a healthcare center in relation to other centers and to a target, taking into account statistical uncertainty. In this paper, we develop a methodology for constructing funnel plots for survival data. The method takes into account censoring and can deal with differences in censoring distributions across centers. Practical issues in implementing the methodology are discussed, particularly in the setting of benchmarking clinical outcomes for hematopoietic stem cell transplantation. A simulation study is performed to assess the performance of the funnel plots under several scenarios. Our methodology is illustrated using data from the European Society for Blood and Marrow Transplantation benchmarking project. Show less
Huijts, D.D.; Dekker, J.W.T.; Bodegom-Vos, L. van; Groningen, J.T. van; Bastiaannet, E.; Marang-van de Mheen, P.J. 2021
Background: Emergency colon cancer surgery is associated with increased mortality and complication risk, which can be due to differences in the organization of hospital care. This study aimed... Show moreBackground: Emergency colon cancer surgery is associated with increased mortality and complication risk, which can be due to differences in the organization of hospital care. This study aimed.Objective: To explore which structural factors in the preoperative, perioperative and postoperative periods influence outcomes after emergency colon cancer surgery.Methods: An observational study was performed in 30 Dutch hospitals. Medical records from 1738 patients operated in the period 2012 till 2015 were reviewed on the type of referral, intensive care unit (ICU) level, surgeon specialization and experience, duration of surgery and operating room time, blood loss, stay on specialized postoperative ward, complication occurrence, reintervention and day of surgery and linked to case-mix data available in the Dutch Colorectal Audit. Multivariate logistic regression analysis was used to estimate the influence of these factors on 30-day mortality, severe complication and failure to rescue (FTR), after adjustment for case-mix.Results: Patients operated by a non-Gastro intestinal/oncology specialized surgeon have significantly increased mortality (Odds Ratio (OR) 2.28 [95% confidence interval (95% CI) 1.23-4.23]) and severe complication risk (OR 1.61 [95% CI 1.08-2.39]). Also, duration of stay in the operating room was significantly associated with increased risk on severe complication (OR 1.03 [95% CI 1.01-1.06]). Patients admitted to a non-specialized ward have significantly increased mortality (OR 2.25 [95% CI 1.46-3.47]) and FTR risk (OR 2.39 [95% CI 1.52-3.75]). A low ICU level (basic ICU) was associated with a lower severe complication risk (OR 0.72 [95% CI 0.52-1.00]). Surgery on Tuesday was associated with a higher mortality risk (OR 2.82 [95% CI 1.24-6.40]) and a severe complication risk (OR 1.77, [95% CI 1.19-2.65]).Conclusion: This study identified a non-specialized surgeon and ward, operating room, time and day of surgery to be risk factors for worse outcomes in emergency colon cancer surgery. Show less
Dijkland, S.A.; Jaja, B.N.R.; Jagt, M. van der; Roozenbeek, B.; Vergouwen, M.D.I.; Suarez, J.I.; ... ; SAHIT Collaboration 2020
OBJECTIVE Differences in clinical outcomes between centers and countries may reflect variation in patient characteristics, diagnostic and therapeutic policies, or quality of care. The purpose of... Show moreOBJECTIVE Differences in clinical outcomes between centers and countries may reflect variation in patient characteristics, diagnostic and therapeutic policies, or quality of care. The purpose of this study was to investigate the presence and magnitude of between-center and between-country differences in outcome after aneurysmal subarachnoid hemorrhage (aSAH).METHODS The authors analyzed data from 5972 aSAH patients enrolled in randomized clinical trials of 3 different treatments from the Subarachnoid Hemorrhage International Trialists (SAHIT) repository, including data from 179 centers and 20 countries. They used random effects logistic regression adjusted for patient characteristics and timing of aneurysm treatment to estimate between-center and between-country differences in unfavorable outcome, defined as a Glasgow Outcome Scale score of 1-3 (severe disability, vegetative state, or death) or modified Rankin Scale score of 4-6 (moderately severe disability, severe disability, or death) at 3 months. Between-center and between-country differences were quantified with the median odds ratio (MOR), which can be interpreted as the ratio of odds of unfavorable outcome between a typical high-risk and a typical low-risk center or country.RESULTS The proportion of patients with unfavorable outcome was 27% (n = 1599). The authors found substantial between-center differences (MOR 1.26, 95% CI 1.16-1.52), which could not be explained by patient characteristics and timing of aneurysm treatment (adjusted MOR 1.21, 95% CI 1.11-1.44). They observed no between-country differences (adjusted MOR 1.13, 95% CI 1.00-1.40).CONCLUSIONS Clinical outcomes after aSAH differ between centers. These differences could not be explained by patient characteristics or timing of aneurysm treatment. Further research is needed to confirm the presence of differences in outcome after aSAH between hospitals in more recent data and to investigate potential causes. Show less
Spierings, J.; Schriemer, R.; Dittmar, S.; Pundert, L. de; Vries-Bouwstra, J. de; Ende, E. van den; ... ; ARCH Study Grp 2020
Introduction: Systemic sclerosis is a rare and complex disease. Optimal management of patients requires knowledge and experience and, importantly, intensive collaboration between hospitals and... Show moreIntroduction: Systemic sclerosis is a rare and complex disease. Optimal management of patients requires knowledge and experience and, importantly, intensive collaboration between hospitals and multidisciplinary teams. Definition and recognition of expert centres in systemic sclerosis is currently lacking, which complicates collaboration between centres and leaves patients poorly informed. The aim of this study was to develop a set of requirements for two types of systemic sclerosis centres in order to establish a nationwide structure for an optimal and transparent organization of care. Methods: A three-round Delphi study was conducted among a panel of rheumatologists working at university or regional hospitals across the Netherlands. Prior to the final consensus round, a session with a patient panel (N = 22) was held. The results of this meeting were described in the last round for rheumatologists. Criteria were divided into five categories: (1) medical care, (2) case load, (3) collaboration, (4) research, (5) training of staff, and (6) other. In the first round, criteria derived from literature were proposed and participants could add criteria that were missing. For every item, participants could indicate if they thought the item should be included for two types of systemic sclerosis centres: (1) systemic sclerosis expert centre or (2) systemic sclerosis treatment centres. Consensus was reached when more than 85% of the panel agreed. Results: In total, 47 rheumatologists participated in Delphi round 1, 35 in round 2 and 43 in round 3. Additional suggestions were added by the patient panel (n = 22). Consensus was reached for the requirements of systemic sclerosis expert centres (45 items) and systemic sclerosis treatment centres (29 items) including minimal caseloads of annual suspected systemic sclerosis cases and total patients in care. Conclusion: Requirements of centres for systemic sclerosis care in the Netherlands were established in this study. Feasibility of certification should be evaluated next. Our proposed list can serve as a model for other countries. Show less
Spierings, J.; Ende, C.H.M. van den; Schriemer, R.M.; Moens, H.J.B.; Bijl, E.A. van der; Bonte-Mineur, F.; ... ; ARCH Study Grp 2020
Objectives. To gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators.Methods. An online questionnaire about healthcare setting, perceived... Show moreObjectives. To gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators.Methods. An online questionnaire about healthcare setting, perceived quality of care (CQ index) and quality indicators, was sent to 2093 patients from 13 Dutch hospitals.Results. Six hundred and fifty patients (mean age 59 years, 75% women, 32% limited cutaneous SSc, 20% diffuse cutaneous SSc) completed the questionnaire. Mean time to diagnosis was 4.3 years (s.d. 6.9) and was longer in women compared with men (4.8 (s.d. 7.3) vs 2.5 (s.d. 5.0) years). Treatment took place in a SSc expert centre for 58%, regional centre for 29% or in both for 39% of patients. Thirteen percent of patients was not aware of whether their hospital was specialized in SSc. The perceived quality of care was rated with a mean score of 3.2 (s.d. 0.5) (range 1.0-4.0). There were no relevant differences between expert and regional centres. The three prioritized process indicators were: good patient-physician interaction (80%), structural multidisciplinary collaboration (46%) and receiving treatment according to SSc guidelines (44%). Absence of disease progression (66%), organ involvement (33%) and digital ulcers (27%) were the three highest rated outcome indicators.Conclusion. The perceived quality of care evaluated in our study was fair to good. No differences between expert and regional centres were observed. Our prioritized process and outcome indicators can be added to indicators suggested by SSc experts in earlier studies and can be used to evaluate the quality of care in SSc. Show less
Boogaard, J.A.; Steen, J.T. van der; Boer, A.H. de; Groenou, M.I.B. van 2019
Objective. Ten years ago, the METEOR tool was developed to simulate treatment-to-target and create an international research database. The development of the METEOR tool and database, research... Show moreObjective. Ten years ago, the METEOR tool was developed to simulate treatment-to-target and create an international research database. The development of the METEOR tool and database, research opportunities and future perspectives are described.Methods. The METEOR tool is a free, online, internationally available tool in which daily practice visits of all rheumatoid arthritis patients visiting a rheumatologist can be registered. In the tool, disease characteristics, patient- and physician-reported outcomes and prescribed treatment could be entered. These can be subsequently displayed in powerful graphics, facilitating treatment decisions and patient-physician interactions. An upload facility is also available, by which data from local electronic health record systems or registries can be integrated into the METEOR database. This is currently being actively used in, among other countries, the Netherlands, Portugal and India.Results. Since an increasing number of hospitals use electronic health record systems, the upload facility is being actively used by an increasing number of sites, enabling them to benefit from the benchmark and research opportunities of METEOR. Enabling a connection between local registries and METEOR is a well established but time-consuming process for which an IT-specialist of METEOR and the local registry are necessary. However, once this process has been finished, data can be uploaded regularly and relatively easily according to a pre-specified format. The METEOR database currently contains data from > 39,000 patients and > 200,000 visits, from 32 different countries and is ever increasing. Continuous efforts are being undertaken to increase the quality of data in the database.Conclusion. Since METEOR was founded 10 years ago, many rheumatologists worldwide have used the METEOR tool to follow-up their patients and improve the quality of care they provide to their patients. Combined with uploaded data, this has led to an extensive growth of the database. It now offers a unique opportunity to study daily practice care and to perform research regarding cross-country differences in a large, worldwide setting, which could provide important knowledge about disease and its treatment in different geographic and clinical settings. Show less
Broek, J.M. van den; Brunsveld-Reinders, A.H.; Zedlitz, A.M.E.E.; Girbes, A.R.J.; Jonge, E. de; Arbous, M.S. 2015
