The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study.

BACKGROUND: The aim of this study is to evaluate how cumulative burden of clinically relevant, self-reported outcomes in childhood cancer survivors (CCSs) compares to a sibling control group and to explore how the burden corresponds to levels of care proposed by existing risk stratifications. METHODS: The authors invited 5925 5-year survivors from the Dutch Childhood Cancer Survivor Study (DCCSS LATER) cohort and their 1066 siblings to complete a questionnaire on health outcomes. Health outcomes were validated by self-reported medication use or medical record review. Missing data on clinically relevant outcomes in CCSs for whom no questionnaire data were available were imputed with predictive mean matching. We calculated the mean cumulative count (MCC) for clinically relevant outcomes. Furthermore, we calculated 30-year MCC for groups of CCSs based on primary cancer diagnosis and treatment, ranked 30-year MCC, and compared the ranking to levels of care according to existing risk stratifications. RESULTS: At median 18.5 years after 5-year survival, 46% of CCSs had at least one clinically relevant outcome. CCSs experienced 2.8 times more health conditions than siblings (30-year MCC = 0.79; 95% confidence interval [CI], 0.74-0.85 vs. 30-year MCC = 0.29; 95% CI, 0.25-0.34). CCSs' burden of clinically relevant outcomes consisted mainly of endocrine and vascular conditions and varied by primary cancer type. The ranking of the 30-year MCC often did not correspond with levels of care in existing risk stratifications. CONCLUSIONS: CCSs experience a high cumulative burden of clinically relevant outcomes that was not completely reflected by current risk stratifications. Choices for survivorship care should extend beyond primary tumor and treatment parameters, and should consider also including CCSs' current morbidity.

The effectiveness of personalised surveillance and aftercare in breast cancer follow-up: a systematic review.

PURPOSE: Breast cancer follow-up (surveillance and aftercare) varies from one-size-fits-all to more personalised approaches. A systematic review was performed to get insight in existing evidence on (cost-)effectiveness of personalised follow-up. METHODS: PubMed, Scopus and Cochrane were searched between 01-01-2010 and 10-10-2022 (review registered in PROSPERO:CRD42022375770). The inclusion population comprised nonmetastatic breast cancer patients ≥ 18 years, after completing curative treatment. All intervention-control studies studying personalised surveillance and/or aftercare designed for use during the entire follow-up period were included. All review processes including risk of bias assessment were performed by two reviewers. Characteristics of included studies were described. RESULTS: Overall, 3708 publications were identified, 64 full-text publications were read and 16 were included for data extraction. One study evaluated personalised surveillance. Various personalised aftercare interventions and outcomes were studied. Most common elements included in personalised aftercare plans were treatment summaries (75%), follow-up guidelines (56%), lists of available supportive care resources (38%) and PROs (25%). Control conditions mostly comprised usual care. Four out of seven (57%) studies reported improvements in quality of life following personalisation. Six studies (38%) found no personalisation effect, for multiple outcomes assessed (e.g. distress, satisfaction). One (6.3%) study was judged as low, four (25%) as high risk of bias and 11 (68.8%) as with concerns. CONCLUSION: The included studies varied in interventions, measurement instruments and outcomes, making it impossible to draw conclusions on the effectiveness of personalised follow-up. There is a need for a definition of both personalised surveillance and aftercare, whereafter outcomes can be measured according to uniform standards.

Opportunities and obstacles in linking large health care registries: the primary secondary cancer care registry - breast cancer.

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.

Varying severities of symptoms underline the relevance of personalized follow-up care in breast cancer survivors: latent class cluster analyses in a cross-sectional cohort.

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.

Priorities and preferences for care of people with multiple chronic conditions.

BACKGROUND: To guide the development of high-quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. AIM: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. PARTICIPANTS AND METHODS: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. RESULTS: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self-management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). CONCLUSION: The JA-CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person-centred integrated care for people with multiple chronic conditions in the Netherlands. PATIENT CONTRIBUTION: European patient experts contributed to the development and applicability assessment of the JA-CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey.

Diagnostic accuracy of follow-up tests for detecting colorectal cancer recurrences in primary care: A systematic review and meta-analysis.

INTRODUCTION: Traditionally, follow-up of colorectal cancer (CRC) is performed in secondary care. In new models of care, the screening part care could be replaced to primary care. We aimed to synthesise evidence on the diagnostic accuracy of commonly used screeners in CRC follow-up applicable in primary care: carcinoembryonic antigen (CEA), ultrasound and physical examination. METHODS: Medline, EMBASE, Cochrane Trial Register and Web of Science databases were systematically searched. Studies were included if they provided sufficient data for a 2 × 2 contingency tables. QUADAS-2 was used to assess methodological quality. We performed bivariate random effects meta-analysis, generated a hypothetical cohort, and reported sensitivity and specificity. RESULTS: We included 12 studies (n = 3223, median recurrence rate 19.6%). Pooled estimates showed a sensitivity for CEA (≤ 5 µg/l) of 59% [47%-70%] and a specificity of 89% [80%-95%]. Only few studies reported sensitivities and specificities for ultrasound (36-70% and 97-100%, respectively) and clinical examination (23% and 27%, respectively). CONCLUSION: In practice, GPs could perform CEA screening. Radiological examination in a hospital setting should remain part of the surveillance strategy. Personalised algorithms accounting for recurrence risk and changes of CEA-values over time might add to the diagnostic value of CEA in primary care.

Falls prevention at GP practices: a description of daily practice.

BACKGROUND: General practitioners (GPs) can be considered the designated professionals to identify high fall risk and to guide older people to fall preventive care. Currently it is not exactly known how GPs treat this risk. This study aims to investigate GPs' daily practice regarding fall preventive care for frail older patients. METHODS: Sixty-five GPs from 32 Dutch practices participated in this study for a period of 12 months. When a GP entered specific International Classification of Primary Care-codes related to frailty and/or high fall risk in their Electronic Health Records, a pop-up appeared asking "Is this patient frail?". If the GP confirmed this, the GP completed a short questionnaire about patient's fall history and fear of falling (FOF), and the fall preventive care provided. RESULTS: The GPs completed questionnaires regarding 1394 frail older patients aged ≥75. Of 20% of these patients, the GPs did not know whether they had experienced a fall or not. The GPs did not know whether a FOF existed in even more patients (29%). Of the patients with a fall history and/or a FOF (N = 726), 37% (N = 271) received fall preventive care. Two main reasons for not offering fall preventive care to these patients were: I) the patient finds treatment too intensive or too much of a hassle (37%), and II) the GP identified a high fall risk but the patient did not acknowledge this (14%). When patients were treated for high fall risk, the GP and the physiotherapist were the most frequently involved health care providers. The involved health care providers most often treated mobility limitations, cardiovascular risk factors, and FOF. CONCLUSIONS: The results from this study show that GPs were frequently not aware of their frail patient's fall history and/or FOF and that the majority of the frail older patients with a fall history and/or FOF did not receive fall preventive care. Developing systematic screening strategies for the primary care setting enhancing the identification of high fall risk and the provision of fall preventive care may improve patients' quality of life and reduce health care costs.

Large variation in assessment and outcome definitions to describe the burden of long-term morbidity in childhood cancer survivors: A systematic review.

We systematically reviewed outcome assessment methods, outcome classification, and severity grading of reported outcomes in studies investigating the burden of physical long-term morbidity in childhood cancer survivors (CCS). A MEDLINE and EMBASE search identified 56 studies reporting on three or more types of health conditions in 5-year CCS, for which information was extracted on outcome types and classification, methods of outcome ascertainment, and severity grading. There was substantial variability in classification and types of health conditions reported and in methods of outcome ascertainment. Only 59% of the included studies applied severity grading, mainly the common terminology criteria of adverse events. This large variation in assessment and definition of the burden of physical long-term morbidity in CCS challenges interpretation, comparison, and pooling data across studies. Global collaboration is needed to standardize assessments and harmonize definitions of long-term physical morbidity and associated outcomes in childhood cancer survivorship research.

Identifying high-need patients with multimorbidity from their illness perceptions and personal resources to manage their health and care: a longitudinal study.

BACKGROUND: A proactive person-centred care process is advocated for people with multimorbidity. To that aim, general practitioners may benefit from support in the identification of high-need patients, i.e. patients who are high or suboptimal users of health services and/or have a poor quality of life. To develop such support, we examined whether knowledge about patients' illness perceptions and personal resources to manage their health and care is useful to identify high-need patients among multimorbid general practice populations. METHODS: Survey data, collected in 2016 and 2017, of 601 patients with two or more chronic diseases (e.g. COPD, diabetes, Parkinson's disease) registered with 40 general practices in the Netherlands were analysed by logistic regression analysis to predict frequent contact with the general practice, contact with general practice out-of-office services, unplanned hospitalisations and poor health related quality of life. Patients' illness perceptions and personal resources (education, health literacy, mastery, mental health status, financial resources, social support) were included as predictors. RESULTS: The four outcomes were only weakly associated among themselves (Phi .07-.19). Patients' illness perceptions and personal resources were of limited value to predict potentially suboptimal health service use, but they were important predictors of health related quality of life. Patients with a poor health related quality of life could be identified by their previously reported illness perceptions (attributing many symptoms to their chronic conditions (B = 1.479, P < .001), a high level of concern (B = 0.844, P = .002) and little perceived control over their illness (B = -0.728, P = .006)) combined with an experienced lack of social support (B = -0.527, P = .042) and a poor mental health status (B = -0.966, P = .001) (sensitivity 80.7%; specificity 68.1%). CONCLUSIONS: Multimorbid patients who frequently contact the general practice, use general practice out-of-office services, have unplanned hospitalisations or a poor health related quality of life are largely distinct high-need subgroups. Multimorbid patients at risk of developing a poor quality of life can be identified from specific illness beliefs, a poor mental health status and unmet social needs.

The involvement of primary care physicians in care for childhood cancer survivors.

BACKGROUND: Childhood cancer survivors (CCS) are at risk of developing long-term morbidity, which is likely to be presented to a primary care physician (PCP). Therefore, insight into CCS's PCP-based health care use is needed. We investigated the volume and underlying health problems of PCP-based health care use and the determinants for PCP-based health care use in CCS. PROCEDURE: Data from a Dutch cohort of 6018 eligible five-year CCS were linked to the Nivel Primary Care database, which contains detailed data from a representative sample of 10% of all Dutch PCPs. Per CCS, two matched controls were selected. Negative binomial regression was performed to compare the annual number of contacts between CCS and controls, and to identify determinants for PCP-based care use among CCS. RESULTS: This study included 602 CCS and 1204 controls. CCS were 1.3 times more likely to contact their PCP than controls (95% CI, 1.2-1.5), up to 1.5 times at attained age over 40 years (95% CI, 1.2-1.8). CCS were 4.9 times more likely to contact their PCP for new malignancies, 3.1 for hematological conditions, and 2.8 for endocrine conditions. Female sex, higher attained age, and treatment with radiotherapy were determinants for having more PCP contacts. CONCLUSIONS: PCPs play an important role in care for CCS. CCS use more PCP-based care than matched controls, mainly for severe conditions such as malignancies, hematological, and endocrine conditions. Our results emphasize the importance of disseminating the current knowledge on long-term morbidity in CCS and on their optimal follow-up care among PCPs.

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.

Selective prevention of cardiometabolic diseases: activities and attitudes of general practitioners across Europe.

Background: Cardiometabolic diseases (CMDs) are the number one cause of death. Selective prevention of CMDs by general practitioners (GPs) could help reduce the burden of CMDs. This measure would entail the identification of individuals at high risk of CMDs-but currently asymptomatic-followed by interventions to reduce their risk. No data were available on the attitude and the extent to which European GPs have incorporated selective CMD prevention into daily practice. Methods: A survey among 575 GPs from the Czech Republic, Denmark, Greece, the Netherlands and Sweden was conducted between September 2016 and January 2017, within the framework of the SPIMEU-project. Results: On average, 71% of GPs invited their patients to attend for CMD risk assessment. Some used an active approach (47%) while others used an opportunistic approach (53%), but these values differed between countries. Most GPs considered selective CMD prevention as useful (82%) and saw it as part of their normal duties (84%). GPs who did find selective prevention useful were more likely to actively invite individuals compared with their counterparts who did not find prevention useful. Most GPs had a disease management programme for individuals with risk factor(s) for cardiovascular disease (71%) or diabetes (86%). Conclusions: Although most GPs considered selective CMD prevention as useful, it was not universally implemented. The biggest challenge was the process of inviting individuals for risk assessment. It is important to tailor the implementation of selective CMD prevention in primary care to the national context, involving stakeholders at different levels.

Climatic factors and long-term trends of influenza-like illness rates in The Netherlands, 1970-2016.

BACKGROUND: Climatic factors affect the survival and transmissibility of respiratory viruses causing influenza-like illness (ILI), and we hypothesized that changes in absolute humidity and temperature may affect long-term trends of ILI incidence rate in temperate countries. We tested this hypothesis using ILI and meteorological time series in the Netherlands for the period 1970-2016. METHODS: We described the long-term trends of ILI incidence, absolute humidity and temperature; modelled the association between climatic factors and ILI activity using negative binomial regression models; and assessed the strength of the association between the seasonal average absolute humidity (or temperature) and ILI incidence rate using the Spearman's rank correlation coefficient. RESULTS: The ILI incidence rate declined from 1970 and reached a minimum in the season 2002-03, but started to increase again from the season 2003-04 onwards. In the negative binominal regression models, the weekly ILI count was inversely associated (p < 0.001) with 0- and 1-week lagged absolute humidity and temperature. After three decades of rising absolute humidity and temperature (1970-2000), the early 2000s represented a trend-reversal point for the climatic time series. The seasonal average ILI incidence rate and absolute humidity (or temperature) were strongly (inversely) correlated. CONCLUSIONS: Our findings suggest that climate change may have played a role in the long-term trends of ILI incidence rates in the Netherlands, as we were able to show that lower humidity and temperature in a given week were associated with higher ILI incidence in the next week, there was a clear time point reversal in climatic parameters and ILI rates in the 2000s, and the average annual ILI incidence was inversely related to average annual temperatures and humidity.

Barriers and facilitators among health professionals in primary care to prevention of cardiometabolic diseases: A systematic review.

The aim of this study is to identify potential facilitators and barriers for health care professionals to undertake selective prevention of cardiometabolic diseases (CMD) in primary health care. We developed a search string for Medline, Embase, Cinahl and PubMed. We also screened reference lists of relevant articles to retain barriers and facilitators for prevention of CMD. We found 19 qualitative studies, 7 quantitative studies and 2 mixed qualitative and quantitative studies. In terms of five overarching categories, the most frequently reported barriers and facilitators were as follows: Structural (barriers: time restraints, ineffective counselling and interventions, insufficient reimbursement and problems with guidelines; facilitators: feasible and effective counselling and interventions, sufficient assistance and support, adequate referral, and identification of obstacles), Organizational (barriers: general organizational problems, role of practice, insufficient IT support, communication problems within health teams and lack of support services, role of staff, lack of suitable appointment times; facilitators: structured practice, IT support, flexibility of counselling, sufficient logistic/practical support and cooperation with allied health staff/community resources, responsibility to offer and importance of prevention), Professional (barriers: insufficient counselling skills, lack of knowledge and of experience; facilitators: sufficient training, effective in motivating patients), Patient-related factors (barriers: low adherence, causes problems for patients; facilitators: strong GP-patient relationship, appreciation from patients), and Attitudinal (barriers: negative attitudes to prevention; facilitators: positive attitudes of importance of prevention). We identified several frequently reported barriers and facilitators for prevention of CMD, which may be used in designing future implementation and intervention studies.

Palliative care for patients with cancer: do patients receive the care they consider important? A survey study.

BACKGROUND: In many countries, GPs and home care nurses are involved in care for patients with advanced cancer. Given the varied and complex needs of these patients, providing satisfactory care is a major challenge for them. We therefore aimed to study which aspects of care patients, GPs and home care nurses consider important and whether patients receive these aspects. METHODS: Seventy-two Dutch patients with advanced cancer, 87 GPs and 26 home care nurses rated the importance of support when experiencing symptoms, respect for patients' autonomy and information provision. Patients also rated whether they received these aspects. Questionnaires were based on the CQ index palliative care. RESULTS: Almost all patients rated information provision and respect for their autonomy as important. The majority also rated support when suffering from specific symptoms as important, especially support when in pain. In general, patients received the care they considered important. However, 49% of those who considered it important to receive support when suffering from fatigue and 23% of those who wanted to receive information on the expected course of their illness did not receive this or only did so sometimes. CONCLUSION: For most patients with advanced cancer, the palliative care that they receive matches what they consider important. Support for patients experiencing fatigue may need more attention. When symptoms are difficult to control, GPs and nurses may still provide emotional support and practical advice. Furthermore, we recommend that GPs discuss patients' need for information about the expected course of their illness.

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.

Estimating incidence and prevalence rates of chronic diseases using disease modeling.

BACKGROUND: Morbidity estimates between different GP registration networks show large, unexplained variations. This research explores the potential of modeling differences between networks in distinguishing new (incident) cases from existing (prevalent) cases in obtaining more reliable estimates. METHODS: Data from five Dutch GP registration networks and data on four chronic diseases (chronic obstructive pulmonary disease [COPD], diabetes, heart failure, and osteoarthritis of the knee) were used. A joint model (DisMod model) was fitted using all information on morbidity (incidence and prevalence) and mortality in each network, including a factor for misclassification of prevalent cases as incident cases. RESULTS: The observed estimates vary considerably between networks. Using disease modeling including a misclassification term improved the consistency between prevalence and incidence rates, but did not systematically decrease the variation between networks. Osteoarthritis of the knee showed large modeled misclassifications, especially in episode of care-based registries. CONCLUSION: Registries that code episodes of care rather than disease generally provide lower estimates of the prevalence of chronic diseases requiring low levels of health care such as osteoarthritis. For other diseases, modeling misclassification rates does not systematically decrease the variation between registration networks. Using disease modeling provides insight in the reliability of estimates.

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.

Adherence to cancer treatment guidelines: influence of general and cancer-specific guideline characteristics.

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.

Health-related quality of life and health care use in cancer survivors compared with patients with chronic diseases.

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.