Self-perceived barriers to healthcare access for patients with post COVID-19 condition.

BACKGROUND: Many patients with post COVID-19 condition (PCC) require healthcare services. However, qualitative studies indicate that patients with PCC encounter many barriers to healthcare access. This cross-sectional study aimed to determine how many PCC patients report barriers to healthcare access and which barriers are reported, and to explore differences between subgroups. METHODS: Data were collected via an online survey from 10,462 adult patients with a confirmed or suspected COVID-19 infection in the Netherlands, who experienced persisting symptoms ≥ 3 months after the initial infection. To study self-perceived barriers, a list of eleven possible barriers was used, covering multiple aspects of healthcare access. Differences between subgroups based on sociodemographic characteristics, medical characteristics, PCC symptoms (fatigue, dyspnoea, cognitive problems, anxiety and depression), and healthcare use (general practitioner, paramedical professional, medical specialist, occupational physician and mental health professional) were studied through multivariable multinomial (0 vs. 1 vs. > 1 barrier) and binomial regression analyses (for each individual barrier). RESULTS: A total of 83.2% of respondents reported at least one barrier to healthcare access. Respondents reported a median of 2.0 (IQR = 3.0) barriers. The barriers "I didn't know who to turn to for help" (50.9%) and "No one with the right knowledge/skills was available" (36.8%) were most frequently reported. Respondents with younger age, higher educational level, not hospitalized during acute COVID-19 infection, longer disease duration, who had more severe PCC symptoms, and who did not consult an occupational physician or paramedical professional, were more likely to report barriers. Analyses per barrier showed that women were more likely to report financial and help-seeking barriers, while men were more likely to report barriers related to availability of care. Hospitalized respondents were less likely to report barriers related to availability of care, but not less likely to report financial or help-seeking barriers. CONCLUSIONS: This study shows that the majority of patients with PCC experiences barriers to healthcare access. Particular attention should be paid to younger, non-hospitalized patients with a long disease duration and severe PCC symptoms. Efforts to remove barriers should focus not only on improving availability of care, but also on helping patients navigate care pathways.

Identification of post-COVID-19 condition phenotypes, and differences in health-related quality of life and healthcare use: a cluster analysis.

The aim of this cross-sectional study was to identify post-COVID-19 condition (PCC) phenotypes and to investigate the health-related quality of life (HRQoL) and healthcare use per phenotype. We administered a questionnaire to a cohort of PCC patients that included items on socio-demographics, medical characteristics, health symptoms, healthcare use, and the EQ-5D-5L. A principal component analysis (PCA) of PCC symptoms was performed to identify symptom patterns. K-means clustering was used to identify phenotypes. In total, 8630 participants completed the survey. The median number of symptoms was 18, with the top 3 being fatigue, concentration problems, and decreased physical condition. Eight symptom patterns and three phenotypes were identified. Phenotype 1 comprised participants with a lower-than-average number of symptoms, phenotype 2 with an average number of symptoms, and phenotype 3 with a higher-than-average number of symptoms. Compared to participants in phenotypes 1 and 2, those in phenotype 3 consulted significantly more healthcare providers (median 4, 6, and 7, respectively, p < 0.001) and had a significantly worse HRQoL (p < 0.001). In conclusion, number of symptoms rather than type of symptom was the driver in the identification of PCC phenotypes. Experiencing a higher number of symptoms is associated with a lower HRQoL and more healthcare use.

Long-term health outcomes of Q-fever fatigue syndrome patients.

This study determined long-term health outcomes (≥10 years) of Q-fever fatigue syndrome (QFS). Long-term complaints, health-related quality of life (HRQL), health status, energy level, fatigue, post-exertional malaise, anxiety, and depression were assessed. Outcomes and determinants were studied for the total sample and compared among age subgroups: young (<40years), middle-aged (≥40-<65years), and older (≥65years) patients. 368 QFS patients were included. Participants reported a median number of 12.0 long-term complaints. Their HRQL (median EQ-5D-5L index: 0.63) and health status (median EQ-VAS: 50.0) were low, their level of fatigue was high, and many experienced post-exertional malaise complaints (98.9%). Young and middle-aged patients reported worse health outcomes compared with older patients, with both groups reporting a significantly worse health status, higher fatigue levels and anxiety, and more post-exertional malaise complaints and middle-aged patients having a lower HRQL and a higher depression risk. Multivariate regression analyses confirmed that older age is associated with better outcomes, except for the number of health complaints. QFS has thus a considerable impact on patients' health more than 10 years after infection. Young and middle-aged patients experience more long-term health consequences compared with older patients. Tailored health care is recommended to provide optimalcare for each QFS patient.

Rib Fixation for Multiple Rib Fractures: Healthcare Professionals Perceived Barriers and Facilitators to Clinical Implementation.

BACKGROUND: Surgical stabilization of rib fractures (SSRF) is associated with improved respiratory symptoms and shorter intensive care admission in patients with flail chest. For multiple rib fractures, the benefit of SSRF remains a topic of debate. This study investigated barriers and facilitators of healthcare professionals to SSRF as treatment for multiple traumatic rib fractures. METHODS: Dutch healthcare professionals were asked to complete an adapted version of the Measurement Instrument for Determinants of Innovations questionnaire to identify barriers and facilitators of SSRF. If ≥ 20% of participants responded negatively, the item was considered a barrier, and if ≥ 80% responded positively, the item was considered a facilitator. RESULTS: Sixty-one healthcare professionals participated; 32 surgeons, 19 non-surgical physicians, and 10 residents. The median experience was 10 years (P25-P75 4-12). Sixteen barriers and two facilitators for SSRF in multiple rib fractures were identified. Barriers included lack of knowledge, experience, evidence on (cost-)effectiveness, and the implication of more operations and higher medical costs. Facilitators were the assumption that SSRF alleviates respiratory problems and the feeling that surgeons are supported by colleagues for SSRF. Non-surgeons and residents reported more and several different barriers than surgeons (surgeons: 14; non-surgical physicians: 20; residents: 21; p < 0.001). CONCLUSION: For adequate implementation of SSRF in patients with multiple rib fractures, implementation strategies should address the identified barriers. Especially, improved clinical experience and scientific knowledge of healthcare professionals, and high-level evidence on the (cost-) effectiveness of SSRF potentially increase its use and acceptance.

Prerequisites, barriers and opportunities in care for Q-fever patients: a Delphi study among healthcare workers.

BACKGROUND: Q-fever is a zoonotic disease that can lead to illness, disability and death. This study aimed to provide insight into the perspectives of healthcare workers (HCWs) on prerequisites, barriers and opportunities in care for Q-fever patients. METHODS: A two-round online Delphi study was conducted among 94 Dutch HCWs involved in care for Q-fever patients. The questionnaires contained questions on prerequisites for high quality, barriers and facilitators in care, knowledge of Q-fever, and optimization of care. For multiple choice, ranking and Likert scale questions, frequencies were reported, while for rating and numerical questions, the median and interquartile range (IQR) were reported. RESULTS: The panel rated the care for Q-fever patients at a median score of 6/10 (IQR = 2). Sufficient knowledge of Q-fever among HCWs (36%), financial compensation of care (30%) and recognition of the disease by HCWs (26%) were considered the most important prerequisites for high quality care. A lack of knowledge was identified as the most important barrier (76%) and continuing medical education as the primary method for improving HCWs' knowledge (76%). HCWs rated their own knowledge at a median score of 8/10 (IQR = 1) and the general knowledge of other HCWs at a 5/10 (IQR = 2). According to HCWs, a median of eight healthcare providers (IQR = 4) should be involved in the care for Q-fever fatigue syndrome (QFS) and a median of seven (IQR = 5) in chronic Q-fever care. CONCLUSIONS: Ten years after the Dutch Q-fever epidemic, HCWs indicate that the long-term care for Q-fever patients leaves much room for improvement. Facilitation of reported prerequisites for high quality care, improved knowledge among HCWs, clearly defined roles and responsibilities, and guidance on how to support patients could possibly improve quality of care. These prerequisites may also improve care for patients with persisting symptoms due to other infectious diseases, such as COVID-19.

Barriers and facilitators for therapeutic drug monitoring of beta-lactams and ciprofloxacin in the ICU: a nationwide cross-sectional study.

BACKGROUND: Recent studies demonstrated that failure of achieving pharmacodynamic targets of commonly used antibiotics is common in critically ill patients. Therapeutic drug monitoring (TDM) can contribute to optimize the exposure of beta-lactams and ciprofloxacin. While evidence for TDM of these antibiotics is growing, translation into clinical implementation remains limited. Therefore, perceived barriers and facilitators are important for implementing TDM in this population. The primary aim of this study was to identify healthcare professionals' barriers and facilitators for the implementation of TDM of beta-lactams and ciprofloxacin in Dutch intensive care units (ICU). METHODS: We conducted a nationwide cross-sectional online survey among healthcare professionals (HCPs) involved in antibiotic treatment of ICU patients. An adapted version of the Measurement Instrument for Determinants of Innovations was sent out. Items were considered barriers when ≥ 20% of participants responded with a negative answer. If ≥ 80% of the participants responded with a positive answer, the item was considered a facilitator. RESULTS: Sixty-four HCPs completed the survey, of which 14 were from academic hospitals, 25 from general hospitals, and 25 from teaching hospitals. Most participants were hospital pharmacists (59%) or medical specialists (23%). Eleven barriers and four facilitators for implementation of TDM of beta-lactams were identified; 17 barriers for TDM of ciprofloxacin and no facilitators. The most important barriers were a lack of conclusive evidence, organizational support, and low availability of assays. Additional barriers were a lack of consensus on which specific patients to apply TDM and which pharmacodynamic targets to use. Identified facilitators for beta-lactam TDM implementation are low complexity and high task perception, combined with the perception that TDM is important to prevent side effects and to adequately treat infections. Twenty-eight percent of participants reported that flucloxacillin could be analyzed in their hospital. Assay availability of other beta-lactams and ciprofloxacin was lower (3-17%). CONCLUSION: Several barriers were identified that could obstruct the implementation of TDM of beta-lactams and ciprofloxacin in the ICU. In particular, education, clear guidelines, and organizational support should be considered when creating tailored implementation strategies. Finally, evidence of beneficial clinical outcomes on TDM of beta-lactams and ciprofloxacin can enhance further implementation.

Shared decision-making for the treatment of proximal femoral fractures in frail institutionalised older patients: healthcare providers' perceived barriers and facilitators.

INTRODUCTION: Proximal femoral fractures are common in frail institutionalised older patients. No convincing evidence exists regarding the optimal treatment strategy for those with a limited pre-fracture life expectancy, underpinning the importance of shared decision-making (SDM). This study investigated healthcare providers' barriers to and facilitators of the implementation of SDM. METHODS: Dutch healthcare providers completed an adapted version of the Measurement Instrument for Determinants of Innovations questionnaire to identify barriers and facilitators. If ≥20% of participants responded with 'totally disagree/disagree', items were considered barriers and, if ≥80% responded with 'agree/totally agree', items were considered facilitators. RESULTS: A total of 271 healthcare providers participated. Five barriers and 23 facilitators were identified. Barriers included the time required to both prepare for and hold SDM conversations, in addition to the reflective period required to allow patients/relatives to make their final decision, and the number of parties required to ensure optimal SDM. Facilitators were related to patients' values, wishes and satisfaction, the importance of SDM for patients/relatives and the fact that SDM is not considered complex by healthcare providers, is considered to be part of routine care and is believed to be associated with positive patient outcomes. CONCLUSION: Awareness of identified facilitators and barriers is an important step in expanding the use of SDM. Implementation strategies should be aimed at managing time constraints. High-quality evidence on outcomes of non-operative and operative management can enhance implementation of SDM to address current concerns around the outcomes.

Sensitivity of the EQ-5D-5L for fatigue and cognitive problems and their added value in Q-fever patients.

PURPOSE: Measuring health-related quality of life (HRQoL) with the EQ-5D-5L might lack sensitivity for disease-specific health complaints. This cross-sectional study analyzed whether fatigue and cognitive problems are captured by the EQ-5D-5L in a Q-fever patient population with persistent fatigue/cognitive problems, and whether addition of fatigue/cognition improved the explained variance for HRQoL. METHODS: A Dutch sample of Q-fever patients filled out the EQ-5D-5L and EQ VAS, the fatigue subscale of the Checklist Individual Strength, and a cognition dimension in the EQ-5D-5L format. The extent to which fatigue and cognition were captured by the EQ-5D-5L was determined based on distributional effects, head-to-head comparisons, Spearman rank correlation coefficients, and regression analyses. Explanatory power was determined of the EQ-5D-5L for the EQ VAS with and without a fatigue and cognition dimension. RESULTS: Out of 432 respondents, 373(86%) reported severe fatigue, 387(90%) cognitive problems. EQ-5D-5L utility and EQ VAS scores of respondents reporting severe fatigue/cognitive problems were significantly lower. Fatigue was strongly correlated with EQ-5D-5L dimensions usual activities and pain/discomfort (r = 0.602 and r = 0.510) and moderately with other EQ-5D-5L dimensions (r = 0.305-0.476). Cognition was strongly correlated with usual activities (r = 0.554) and moderately with other dimensions (r = 0.291-0.451). Adding fatigue to the EQ-5D-5L increased explanatory power for the EQ VAS with 6%. CONCLUSION: Fatigue and cognitive problems in Q-fever patients were partially captured by the EQ-5D-5L dimensions. The addition of fatigue to the EQ-5D-5L slightly improved explained variance for the EQ VAS. This potentially also accounts for patients who experience sequelae of other infectious diseases, such as COVID-19.

Scar quality in children with burns 5-7 years after injury: A cross-sectional multicentre study.

Long-term scar formation is an important adverse consequence in children with burns, however, information regarding scar quality in the long-term is lacking. Therefore, we evaluated scar quality and its predictors in children with burns 5-7 years after injury. Parents of children with mild/intermediate burns (≤10% total body surface area burned), and of children with severe burns (>10% burned) completed the patient scale of the Patient and Observer Scar Assessment Scale (POSAS 2.0) for their children's-in their opinion-worst scar 5-7 years post-burn. Outcomes and predictive factors of scar quality were studied, and, for children with severe burns, POSAS parent scores were compared with observer scores. We included 103 children with mild/intermediate burns and 28 with severe burns (response rate: 51%). Most children (87%) had scars that differed from normal skin, with most differences reported for colour, and least for pain. Except for colour, children with severe burns had significantly higher scores (difference 0-2 points) on all scar characteristics (representing poorer scar quality) compared with children with mild/intermediate burns. Parent POSAS scores were on average 2.0-2.6 points higher compared to observer scores. Number of surgeries predicted both the mean POSAS and the mean overall opinion of a scar. In conclusion, 5-7 years post-burn, the scar of the majority of children differed from normal skin, especially on the characteristic colour. The uncovered insights are useful in counselling of children and their parents on expectations of the final outcome of their (children's) scar(s), and help in further targeting scar prevention strategies for the individual child.

Health care utilization and health-related quality of life of injury patients: comparison of educational groups.

BACKGROUND: Differences in health care utilization by educational level can contribute to inequalities in health. Understanding health care utilization and health-related quality of life (HRQoL) of educational groups may provide important insights into the presence of these inequalities. Therefore, we assessed characteristics, health care utilization and HRQoL of injury patients by educational level. METHOD: Data for this registry based cohort study were extracted from the Dutch Injury Surveillance System. At 6-month follow-up, a stratified sample of patients (≥25 years) with an unintentional injury reported their health care utilization since discharge and completed the EQ-5-Dimension, 5-Level (EQ-5D-5L) and visual analogue scale (EQ VAS). Logistic regression analyses, adjusting for patient and injury characteristics, were performed to investigate the association between educational level and health care utilization. Descriptive statistics were used to analyse HRQoL scores by educational level, for hospitalized and non-hospitalized patients. RESULTS: This study included 2606 patients; 47.9% had a low, 24.4% a middle level, and 27.7% a high level of education. Patients with low education were more often female, were older, had more comorbidities, and lived more often alone compared to patients with high education (p < 0.001). Patients with high education were more likely to visit a general practitioner (OR: 1.38; CI: 1.11-1.72) but less likely to be hospitalized (OR: 0.79; CI: 0.63-1.00) and to have nursing care at home (OR: 0.66; CI: 0.49-0.90) compared to their low educated counterparts. For both hospitalized an non-hospitalized persons, those with low educational level reported lower HRQoL and more problems on all dimensions than those with a higher educational level. CONCLUSION: Post-discharge, level of education was associated with visiting the general practitioner and nursing care at home, but not significantly with use of other health care services in the 6 months post-injury. Additionally, patients with a low educational level had a poorer HRQoL. However, other factors including age and sex may also explain a part of these differences between educational groups. It is important that patients are aware of potential consequences of their trauma and when and why they should consult a specific health care service after ED or hospital discharge.

Conventional and retrospective change in health-related quality of life of trauma patients: an explorative observational follow-up study.

BACKGROUND: Within trauma care measurement of changes in health-related quality of life (HRQL) is used in understanding patterns of recovery over time. However, conventionally-measured change in HRQL may not always reflect the change in HRQL as perceived by the patient. Recall bias and response shift may contribute to disagreement between conventional and retrospective change in HRQL. This study aimed to measure conventional and retrospective change of HRQL and assess to which extent recall bias and response shift contribute to disagreement between these two in a heterogeneous sample of adult trauma patients. METHODS: A sample of trauma patients (≥18 years) who attended the Emergency Department and were admitted to an Intensive Care unit or ward of one of ten Dutch hospitals received postal questionnaires 1 week (T1) and 3 months (T2) post-injury. At T1 and T2 participants completed the EQ-5D-3 L and EQ-VAS for their current health status. At T2 participants also filled out a recall and then-test regarding their health status at T1. The responses were used to assess conventional and retrospective change, recall bias and response shift. Wilcoxon signed rank tests were used to examine conventional and retrospective change on a group level. The intraclass correlation coefficient (ICC) was used to examine individual agreement between conventional and retrospective change. Uni- and multivariate linear regression analysis were used to investigate the association between background factors and recall bias and response shift. RESULTS: The EQ-5D-3 L, recall and then-test were completed by 550 patients. Mean EQ-5D-3 L summary score improved from 0.48 at T1 to 0.74 at T2. Mean EQ-VAS score improved from 56 at T1 to 73 at T2. Retrospective change was significantly higher than conventional change (EQ-5D-3 L: Z = -5.2, p < 0.05; EQ-VAS Z = -2.1, p < 0.05). Pairwise comparisons showed that agreement between conventional and retrospective change was fair (EQ-5D-3 L: ICC = 0.49; EQ-VAS: ICC = 0.48). For EQ-5-3 L response shift was significantly higher than recall bias (Z = - 4.5, p < 0.05). Patients with traumatic brain injury (TBI), severe injury and/or posttraumatic stress symptoms were more susceptible to recall bias and response shift. CONCLUSIONS: We conclude that, compared to recall bias, response shift contributed more to the disagreement between conventional and retrospective change in EQ-5D-3 L summary score and EQ-VAS. Predictable subgroups of trauma patients were more susceptible to recall bias and response shift.

Improved and standardized method for assessing years lived with disability after burns and its application to estimate the non-fatal burden of disease of burn injuries in Australia, New Zealand and the Netherlands.

BACKGROUND: Burden of disease estimates are an important resource in public health. Currently, robust estimates are not available for the burn population. Our objectives are to adapt a refined methodology (INTEGRIS method) to burns and to apply this new INTEGRIS-burns method to estimate, and compare, the burden of disease of burn injuries in Australia, New Zealand and the Netherlands. METHODS: Existing European and Western-Australian health-related quality of life (HRQL) datasets were combined to derive disability weights for three homogenous burn injury groups based on percentage total body surface area (%TBSA) burned. Subsequently, incidence data from Australia, New Zealand, and the Netherlands from 2010 to 2017 were used to compute annual non-fatal burden of disease estimates for each of these three countries. Non-fatal burden of disease was measured by years lived with disability (YLD). RESULTS: The combined dataset included 7159 HRQL (EQ-5D-3 L) outcomes from 3401 patients. Disability weights ranged from 0.046 (subgroup < 5% TBSA burned > 24 months post-burn) to 0.497 (subgroup > 20% TBSA burned 0-1 months post-burn). In 2017 the non-fatal burden of disease of burns for the three countries (YLDs/100,000 inhabitants) was 281 for Australia, 279 for New Zealand and 133 for the Netherlands. CONCLUSIONS: This project established a method for more precise estimates of the YLDs of burns, as it is the only method adapted to the nature of burn injuries and their recovery. Compared to previous used methods, the INTEGRIS-burns method includes improved disability weights based on severity categorization of burn patients; a better substantiated proportion of patients with lifelong disability based; and, the application of burn specific recovery timeframes. Information derived from the adapted method can be used as input for health decision making at both the national and international level. Future studies should investigate whether the application is valid in low- and middle- income countries.

Patient-reported scar quality of adults after burn injuries: A five-year multicenter follow-up study.

Scar formation is an important adverse consequence of burns. How patients appraise their scar quality is often studied shortly after sustaining the injury, but information in the long-term is scarce. Our aim was, therefore, to evaluate long-term patient-reported quality of burn scars. Adults with a burn center admission of ≥1 day between August 2011 and September 2012 were invited to complete a questionnaire on long-term consequences of burns. We enriched this sample with patients with severe burns (>20% total body surface area [TBSA] burned or TBSA full thickness >5%) treated between January 2010 and March 2013. Self-reported scar quality was assessed with the Patient Scale of the Patient and Observer Scar Assessment Scale (POSAS). Patients completed this scale for their-in their opinion-most severe scar ≥5 years after burns. This study included 251 patients with a mean %TBSA burned of 10%. The vast majority (91.4%) reported at least minor differences with normal skin (POSAS item score ≥2) on one or more scar characteristics and 78.9% of the patients' overall opinion was that their scar deviated from normal skin. Patients with severe burns had higher POSAS scores, representing worse scar quality, than patients with mild/intermediate burns, except for color, which was high in both groups. A longer hospital stay predicted reduced scar quality (both mean POSAS and mean overall opinion of the scar) in multivariate analyses. In addition, female gender was also associated with a poorer overall opinion of the scar. In conclusion, this study provides new insights in long-term scar quality. Scars differed from normal skin in a large part of the burn population more than 5 years after burns, especially in those with severe burns. Female gender is associated with a poorer patients' overall opinion of their scar, which may be an indication of gender differences in perception of scar quality after burns.

The added value of the EQ-5D with a cognition dimension in injury patients with and without traumatic brain injury.

PURPOSE: This study investigated the psychometric gain, if any, from the extension of the EQ-5D with a cognition bolt-on (EQ-5D + C) in a large cohort injury patients with and without traumatic brain injury (TBI). METHODS: Hospitalized adult injury patients filled out a survey 1 month after initial admission. The survey included the EQ-5D-3L, the cognition bolt-on item in EQ-5D format, and the visual analogue scale (EQ-VAS). We compared ceiling and other distributional effects between EQ-5D and EQ-5D + C and TBI and non-TBI group, and assessed convergent validity using the predictive association with EQ-VAS. Also, we assessed explanatory power using regression analysis, and classification efficiency using Shannon indices. RESULTS: In total, 715 TBI patients and 1978 non-TBI patients filled out the EQ-5D + C and EQ-VAS. Perfect health was reported by 7.9% (N = 214) on the EQ-5D, and 7.3% (N = 197) on the EQ-5D + C. Convergent validity was highest for EQ-5D + C in the TBI group (Spearman's rank correlation coefficient = - 0.736) and lowest for EQ-5D in the non-TBI group (Spearman's rank correlation coefficient = - 0.652). For both TBI and non-TBI groups, the explanatory power of EQ-5D + C was slightly higher than of EQ-5D (R2 = 0.56 vs. 0.53 for TBI; R2 = 0.47 vs. 0.45 for non-TBI). Absolute classification efficiency was higher for EQ-5D + C than for EQ-5D in both TBI groups, whereas relative classification efficiency was similar. CONCLUSIONS: Psychometric performance in general of both the EQ-5D and EQ-5D + C was better in TBI patients. Adding a cognitive bolt-on slightly improved the psychometric performance of the EQ-5D-3L.

Calculating incidence rates and prevalence proportions: not as simple as it seems.

BACKGROUND: Incidence rates and prevalence proportions are commonly used to express the populations health status. Since there are several methods used to calculate these epidemiological measures, good comparison between studies and countries is difficult. This study investigates the impact of different operational definitions of numerators and denominators on incidence rates and prevalence proportions. METHODS: Data from routine electronic health records of general practices contributing to NIVEL Primary Care Database was used. Incidence rates were calculated using different denominators (person-years at-risk, person-years and midterm population). Three different prevalence proportions were determined: 1 year period prevalence proportions, point-prevalence proportions and contact prevalence proportions. RESULTS: One year period prevalence proportions were substantially higher than point-prevalence (58.3 - 206.6%) for long-lasting diseases, and one year period prevalence proportions were higher than contact prevalence proportions (26.2 - 79.7%). For incidence rates, the use of different denominators resulted in small differences between the different calculation methods (-1.3 - 14.8%). Using person-years at-risk or a midterm population resulted in higher rates compared to using person-years. CONCLUSIONS: All different operational definitions affect incidence rates and prevalence proportions to some extent. Therefore, it is important that the terminology and methodology is well described by sources reporting these epidemiological measures. When comparing incidence rates and prevalence proportions from different sources, it is important to be aware of the operational definitions applied and their impact.

Availability and effectiveness of decision aids for supporting shared decision making in patients with advanced colorectal and lung cancer: Results from a systematic review.

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.

Predictors of health-related quality of life after burn injuries: a systematic review.

BACKGROUND: Identifying predictors of health-related quality of life (HRQL) following burns is essential for optimization of rehabilitation for burn survivors. This study aimed to systematically review predictors of HRQL in burn patients. METHODS: Medline, Embase, Web of Science, Cochrane, CINAHL, and Google Scholar were reviewed from inception to October 2016 for studies that investigated at least one predictor of HRQL after burns. The Quality in Prognostic Studies tool was used to assess risk of bias of included studies. RESULTS: Thirty-two studies were included. Severity of burns, postburn depression, post-traumatic stress symptoms, avoidance coping, less emotional or social support, higher levels of neuroticism, and unemployment postburn were found to predict a poorer HRQL after burns in multivariable analyses. In addition, weaker predictors included female gender, pain, and a postburn substance use disorder. Risk of bias was generally low in outcome measurement and high in study attrition and study confounding. CONCLUSIONS: HRQL after burns is affected by the severity of burns and the psychological response to the trauma. Both constructs provide unique information and knowledge that are necessary for optimized rehabilitation. Therefore, both physical and psychological problems require attention months to years after the burn trauma.

The availability and effectiveness of tools supporting shared decision making in metastatic breast cancer care: a review.

BACKGROUND: Shared decision-making (SDM) in the management of metastatic breast cancer care is associated with positive patient outcomes. In daily clinical practice, however, SDM is not fully integrated yet. Initiatives to improve the implementation of SDM would be helpful. The aim of this review was to assess the availability and effectiveness of tools supporting SDM in metastatic breast cancer care. METHODS: Literature databases were systematically searched for articles published since 2006 focusing on the development or evaluation of tools to improve information-provision and to support decision-making in metastatic breast cancer care. Internet searches and experts identified additional tools. Data from included tools were extracted and the evaluation of tools was appraised using the GRADE grading system. RESULTS: The literature search yielded five instruments. In addition, two tools were identified via internet searches and consultation of experts. Four tools were specifically developed for supporting SDM in metastatic breast cancer, the other three tools focused on metastatic cancer in general. Tools were mainly applicable across the care process, and usable for decisions on supportive care with or without chemotherapy. All tools were designed for patients to be used before a consultation with the physician. Effects on patient outcomes were generally weakly positive although most tools were not studied in well-designed studies. CONCLUSIONS: Despite its recognized importance, only two tools were positively evaluated on effectiveness and are available to support patients with metastatic breast cancer in SDM. These tools show promising results in pilot studies and focus on different aspects of care. However, their effectiveness should be confirmed in well-designed studies before implementation in clinical practice. Innovation and development of SDM tools targeting clinicians as well as patients during a clinical encounter is recommended.

Review of guidance on recurrence risk management for general practitioners in breast cancer, colorectal cancer and melanoma guidelines.

Background: General practitioners (GPs) will face cancer recurrences more frequently due to the rising number of cancer survivors and greater involvement of GPs in the follow-up care. Currently, GPs are uncertain about managing recurrence risks and may need more guidance. Objective: To explore what guidance is available for GPs on managing recurrence risks for breast cancer, colorectal cancer and melanoma, and to examine whether recurrence risk management differs between these tumour types. Methods: Breast cancer, colorectal cancer and melanoma clinical practice guidelines were identified via searches on internet and the literature, and experts were approached to identify guidelines. Guidance on recurrence risk management that was (potentially) relevant for GPs was extracted and summarized into topics. Results: We included 24 breast cancer, 21 colorectal cancer and 15 melanoma guidelines. Identified topics on recurrence risk management were rather similar among the three tumour types. The main issue in the guidelines was recurrence detection through consecutive diagnostic testing. Guidelines agree on both routine and nonroutine tests, but, recommended frequencies for follow-up are inconsistent, except for mammography screening for breast cancer. Only six guidelines provided targeted guidance for GPs. Conclusion: This inventory shows that recurrence risk management has overlapping areas between tumour types, making it more feasible for GPs to provide this care. However, few guidance on recurrence risk management is specific for GPs. Recommendations on time intervals of consecutive diagnostic tests are inconsistent, making it difficult for GPs to manage recurrence risks and illustrating the need for more guidance targeted for GPs.