The prediagnostic general practitioner care of sarcoma patients: A real-world data study.

BACKGROUND: Limited understanding exists regarding early sarcoma symptoms presented during general practitioner (GP) consultations. The study explores GP visit patterns and recorded diagnoses in the 12 months preceding sarcoma diagnosis. METHODS: Sarcoma cases diagnosed from 2010 to 2020 were identified through the Netherlands Cancer Registry alongside general practice data. Sarcoma cases were age and gender matched to cancer-free controls (2:1 or 1:1 ratio). RESULTS: A total of 787 individuals with soft-tissue sarcoma (STS) and 188 individuals with bone sarcoma (BS) were identified. There was a significant difference in monthly GP contacts from 4 months to the last month before STS diagnosis, and 2 months before BS diagnosis between cases and controls. Most prevalent diagnoses recorded by the GP for STS cases included musculoskeletal neoplasm (26.6%), uncomplicated hypertension (15.6%), and cystitis/other urinary infections (12.2%). For BS cases, musculoskeletal neoplasm (42.8%), knee symptoms/complaints (9.7%), and shoulder symptoms/complaints (9.7%) were most frequent. CONCLUSIONS AND DISCUSSION: A significant difference in GP contacts between cases and controls preceding sarcoma diagnosis. STS cases were predominantly diagnosed with nonspecific symptoms, whereas BS cases with diagnoses more suggestive of BS. Better understanding of the prediagnostic trajectory could aid GPs in early identification of sarcoma.

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.

Prevalence of Health Problems and Health-Care Use in Partners of People with Dementia: Longitudinal Analysis with Routinely Recorded Health and Administrative Data.

INTRODUCTION: This study aims to provide insight into the prevalence of health problems and the frequency of general practitioner (GP) contacts in cohabiting partners of persons with dementia, during the year prior to the dementia diagnosis and up to 3 years after the diagnosis. METHODS: Partners of persons with dementia and a matched control group of partners of persons without dementia were identified in the routinely recorded electronic health records of 451 Dutch general practices in 2008-2015. These data were used to examine the prevalence of the partners' health problems. Differences between these partners and comparison partners in the prevalence of 16 groups of health problems (diagnostic chapters) and in the frequency of GP contacts were examined using generalized estimating equation models. RESULTS: 1,711 partners of persons with dementia and 6,201 comparison partners were included in the analyses. Social problems, more specifically problems related to the illness and/or the loss of the partner, were significantly more prevalent in partners than in comparison partners across the years (p < 0.01), as were musculoskeletal problems (p < 0.01). Respiratory and psychological problems increased over time in partners and remained stable in comparison partners. Across the years, partners contacted their GP more often than comparison partners (p < 0.01). DISCUSSION/CONCLUSION: Having a cohabiting partner with dementia has consequences for caregiver's physical and psychosocial health. The specific health problems found in this study and the increase in GP contacts might be relevant indicators of overburdening in partners of persons with dementia.

Evaluating quality of care at the end of life and setting best practice performance standards: a population-based observational study using linked routinely collected administrative databases.

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

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.

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.

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.

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.

Non-oncology physician visits after diagnosis of cancer in children.

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

Health care needs of cancer survivors in general practice: a systematic review.

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

Measuring the impact of influenza vaccination in the Netherlands using retrospective observational primary care, hospitalisation and mortality data.

We aimed to estimate the impact of influenza vaccination in the Netherlands using general practitioner medical records for 2011-2020. We found that vaccinees had higher consultation rates for influenza-like-illness, acute respiratory infections, and pneumonia, as well as antibiotic use, hospitalisations, and several control diagnoses (i.e. illnesses for which there was no a priori expectation that influenza vaccination would play a protective effect). We found similar rates for respiratory mortality and lower all-cause mortality in the vaccinees versus non-vaccinees, mainly driven by the 75+ age group. These results expand, but are fairly consistent with those of previous investigations, and highlight the difficulty of using registry data to assess the impact of vaccination, because of underlying differences between vaccinees and non-vaccinees. Whether these biases also play a role for hospitalisations and mortality remains unclear. Our findings support the implementation of randomized studies to assess the impact of influenza vaccination.

Lessons learned from the development of a national registry on dementia care and support based on linked national health and administrative data.

Introduction: This paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support. Methods: This paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability). Results: The linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources. Conclusions: A key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data.

Improving Diagnosis and Care for Patients With Sarcoma: Do Real-World General Practitioners Data and Prospective Data Collections Have a Place Next to Clinical Trials?

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

Influence of symptom expectancies on stair-climbing performance in chronic fatigue syndrome: effect of study context.

BACKGROUND: In patients with chronic fatigue syndrome (CFS), performance of physical activities may be affected by an anticipated increase in symptoms after these activities. Nijs et al. previously studied the influence of symptom expectancies and related psychological processes on the performance of an isolated physical activity [Nijs J, Meeus M, Heins M, Knoop H, Moorkens G, Bleijenberg G. Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing in chronic fatigue syndrome: an experimental study. Disabil Rehabil 2012. doi: 10.3109/09638288.2011.641661 .]. PURPOSE: We aimed to validate the previous findings in a larger group of patients in a different setting. We also extended the possible underlying psychological processes studied. METHOD: In 49 CFS patients, we measured performance (duration and increase in heart rate) during self-paced climbing and descending of two floors of stairs. Before this task, patients rated experienced fatigue and anticipated fatigue after stair climbing. In addition, kinesiophobia, catastrophising and focusing on bodily symptoms were measured. Using correlational and regression analyses, we tested whether performance during stair climbing could be explained by experienced and anticipated fatigue and psychological factors. RESULTS: Longer duration of stair climbing correlated with higher anticipated fatigue, independently of sex, age, body mass index and fatigue before stair climbing. Focusing on bodily symptoms and fatigue-related catastrophising were related to anticipated fatigue. CONCLUSION: Symptom expectations affect the performance of physical activity in CFS patients, possibly through focusing on bodily symptoms and catastrophising. These findings partially contradict the findings of the previous study, which stresses the importance of study context in conducting this type of experiments (i.e., patient characteristics, instructions).

Partners of cancer patients consult their GPs significantly more often with both somatic and psychosocial problems.

OBJECTIVE: Partners of cancer patients experience psychological distress and impaired physical health around and after the diagnosis of cancer. It is unknown whether these problems are presented to the general practitioner (GP). This study aimed to establish partners' GP use around the diagnosis of cancer. DESIGN: Cohort study. SETTING: Primary care. SUBJECTS: Partners of 3071 patients with breast, prostate, colorectal, or lung cancer were included. Patients were diagnosed in 2001-2009 and were alive at least two years after diagnosis. MAIN OUTCOME MEASURES: Number of GP contacts and health problems in partners between six months before and two years after diagnosis. RESULTS: In the first six months after diagnosis, partners' GP use was similar to baseline (18 to six months before diagnosis). Between six and 24 months after diagnosis, GP use was increased in partners of patients with breast, prostate, and colorectal cancer, an increase of 31% (p = 0.001), 26% (p = 0.001), and 19% (p = 0.042), respectively. In partners of patients with breast cancer and colorectal cancer, GP use was increased for both somatic and psychosocial symptoms. In partners of prostate cancer patients, an increase was seen in somatic symptoms, whereas in partners of lung cancer patients, GP use was only increased for psychosocial symptoms. "Problems with the illness of the partner" was a frequently recorded reason for contact in the first six months after diagnosis. CONCLUSION: GP use of partners of cancer patients is increased 6-24 months after diagnosis, but health problems vary between cancer types. GPs should be alert for somatic and psychosocial problems in partners of cancer patients.

Development of machine learning models to predict cancer-related fatigue in Dutch breast cancer survivors up to 15 years after diagnosis.

PURPOSE: To prevent (chronic) cancer-related fatigue (CRF) after breast cancer, it is important to identify survivors at risk on time. In literature, factors related to CRF are identified, but not often linked to individual risks. Therefore, our aim was to predict individual risks for developing CRF. METHODS: Two pre-existing datasets were used. The Nivel-Primary Care Database and the Netherlands Cancer Registry (NCR) formed the Primary Secondary Cancer Care Registry (PSCCR). NCR data with Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship (PROFILES) data resulted in the PSCCR-PROFILES dataset. Predictors were patient, tumor and treatment characteristics, and pre-diagnosis health. Fatigue was GP-reported (PSCCR) or patient-reported (PSCCR-PROFILES). Machine learning models were developed, and performances compared using the C-statistic. RESULTS: In PSCCR, 2224/12813 (17%) experienced fatigue up to 7.6 ± 4.4 years after diagnosis. In PSCCR-PROFILES, 254 (65%) of 390 patients reported fatigue 3.4 ± 1.4 years after diagnosis. For both, models predicted fatigue poorly with best C-statistics of 0.561 ± 0.006 (PSCCR) and 0.669 ± 0.040 (PSCCR-PROFILES). CONCLUSION: Fatigue (GP-reported or patient-reported) could not be predicted accurately using available data of the PSCCR and PSCCR-PROFILES datasets. IMPLICATIONS FOR CANCER SURVIVORS: CRF is a common but underreported problem after breast cancer. We aimed to develop a model that could identify individuals with a high risk of developing CRF, ideally to help them prevent (chronic) CRF. As our models had poor predictive abilities, they cannot be used for this purpose yet. Adding patient-reported data as predictor could lead to improved results. Until then, awareness for CRF stays crucial.

Adverse health effects after breast cancer up to 14 years after diagnosis.

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