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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.
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Assistência ao Convalescente , Neoplasias da Mama , Feminino , Humanos , Assistência ao Convalescente/métodos , Neoplasias da Mama/terapia , Análise Custo-Benefício , Seguimentos , Medicina de Precisão/métodosRESUMO
INTRODUCTION: Temporal data has numerous challenges for deep learning such as irregularity of sampling. New algorithms are being developed that can handle these temporal challenges better. However, it is unclear how the performance ranges from classical non-temporal models to newly developed algorithms. Therefore, this study compares different non-temporal and temporal algorithms for a relevant use case, the prediction of atrial fibrillation (AF) using general practitioner (GP) data. METHODS: Three datasets with a 365-day observation window and prediction windows of 14, 180 and 360 days were used. Data consisted of medication, lab, symptom, and chronic diseases codings registered by the GP. The benchmark discarded temporality and used logistic regression, XGBoost models and neural networks on the presence of codings over the whole year. Pattern data extracted common patterns of GP codings and tested using the same algorithms. LSTM and CKConv models were trained as models incorporating temporality. RESULTS: Algorithms which incorporated temporality (LSTM and CKConv, (max AUC 0.734 at 360 days prediction window) outperformed both benchmark and pattern algorithms (max AUC 0.723, with a significant improvement using the 360 days prediction window (p = 0.04). The difference between the benchmark and the LSTM or CKConv algorithm decreased with smaller prediction windows, indicating temporal importance for longer prediction windows. The CKConv and LSTM algorithm performed similarly, possibly due to limited sequence length. CONCLUSION: Temporal models outperformed non-temporal models for the prediction of AF. For temporal models, CKConv is a promising algorithm to handle temporal data using GP data as it can handle irregular data.
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Fibrilação Atrial , Clínicos Gerais , Humanos , Fibrilação Atrial/diagnóstico , Redes Neurais de Computação , Algoritmos , Modelos LogísticosRESUMO
OBJECTIVE: Increased cancer survival leads to more patients requiring oncological follow-up. Debate about how best to coordinate this care has led to the proposed involvement of general practitioners (GPs) rather than continued reliance on hospital care. However, we still require patient opinions to inform this debate. METHODS: This qualitative interview study explored opinions about organization of follow-up care of patients treated curatively for breast and colorectal cancer. Thematic analysis was applied. RESULTS: We interviewed 29 patients and identified three themes concerning care substitution: "benefits and barriers," "requirements," and "suitable patient groups." Benefits included accessibility, continuity, contextual knowledge, and psychosocial support. Barriers included concerns about cancer-specific expertise of GPs and longer waiting times. Requirements were sufficient time and remuneration, sufficient training, clear protocols, and shared-care including efficient communication with specialists. CONCLUSIONS: According to patients with cancer, formal GP involvement appears feasible, although important barriers must be overcome before instituting care substitution. A possible solution are personalized follow-up plans based on three-way conversations with the specialist and the GP after the initial hospital care. PRACTICE IMPLICATIONS: With adequate training, time, and remuneration, formal GP involvement could ensure more comprehensive care, possibly starting with less complex cases.
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Neoplasias Colorretais , Clínicos Gerais , Humanos , Seguimentos , Clínicos Gerais/psicologia , Assistência ao Convalescente , Continuidade da Assistência ao Paciente , Pesquisa Qualitativa , Neoplasias Colorretais/terapiaRESUMO
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.
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Sobreviventes de Câncer , Neoplasias , Criança , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , Neoplasias/patologia , Autorrelato , Sobrevivência , SobreviventesRESUMO
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.
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BACKGROUND: In the Dutch atrial fibrillation (AF) guideline for GPs, vitamin K antagonists (VKAs) and direct oral anticoagulants (DOACs) are seen as equivalent, while in cardiology there is a preference for DOACs. AIM: To describe the pattern of oral anticoagulant (OAC) prescribing for AF by GPs and assess whether GPs proactively convert between VKAs and DOACs in patients with AF. DESIGN & SETTING: Observational study using routine practice data from 214 general practices, from 2017 until 2019. METHOD: Patients aged ≥60 years diagnosed with AF, who had been prescribed OACs by their GPs in 2018 were included. A distinction was made between starters, who were participants who did not use OACs in 2017, and prevalent users. It was observed and recorded whether patients switched between VKAs and DOACs. RESULTS: A total of 12 516 patients with AF were included. Four hundred and seventy-six patients (4%) started OACs in 2018; 12 040 patients were prevalent OAC users. When GPs started patients on OACs, DOACs were prescribed the most (88%). Among prevalent users, more than half of the patients used VKAs (60%). GPs switched between OACs for 1% of starters and 0.6% of prevalent users in 2018 and 2019. CONCLUSION: Dutch GPs predominantly start with DOACs in newly diagnosed patients with AF. Prevalent patients predominantly use VKAs and switching from a DOAC to a VKA is unusual. Consequently, the number of patients using VKAs will decline in the upcoming years. This trend raises questions about the future of organising frequent international normalised ratio (INR) checks for VKA users.
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BACKGROUND: Guidelines recommend to prescribe a laxative with an opioid to prevent constipation. We aimed to determine the adherence by general practitioners (GPs) to this recommendation and to explore which GP- and patient related factors were associated with it from the perspective of the GP. METHODS: We conducted an observational study using GPs' prescription data from the Nivel Primary Care Database combined with a questionnaire asking for reasons of non-adherence. The proportion of first opioid prescriptions prescribed together with a laxative was determined as primary outcome. Possible explanatory factors such as the quality of registration, the level of collaboration with the pharmacy, familiarity with the recommendation and use of a clinical decision support system were explored, as were the self-reported reasons for non-adherence (classified as either GP-related or patient-related). We assessed the association of factors with the primary outcome using univariable multilevel logistic regression analysis. RESULTS: The recommendation was measured in 195 general practices. The median proportion of first opioid prescriptions prescribed together with a laxative in these practices was 54% (practice range 18-88%). None of the determinants was consistently associated with the primary outcome. GPs from 211 practices filled out the questionnaire and the most frequently mentioned reason not to prescribe a laxative was that the patient has laxatives in stock, followed by that the patient doesn't want a laxative; both were patient-related factors. CONCLUSION: There was room for improvement in following the guideline on laxative prescribing in opioid use. A main reason seemed to be that the patient refuses a laxative. Improvement measures should therefore focus on communication between GPs and patients on the relevance of co-using a laxative with opioids. Future studies need to establish the effect of such improvement measures, and determine whether reasons for non-adherence to the guideline changed over time.
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Medicina Geral , Transtornos Relacionados ao Uso de Opioides , Humanos , Laxantes/uso terapêutico , Analgésicos Opioides/uso terapêutico , Países BaixosRESUMO
INTRODUCTION: Long-term survival after childhood cancer often comes at the expense of late, adverse health conditions. However, survivorship care is frequently not available for adult survivors in Europe. The PanCareFollowUp Consortium therefore developed the PanCareFollowUp Care Intervention, an innovative person-centred survivorship care model based on experiences in the Netherlands. This paper describes the protocol of the prospective cohort study (Care Study) to evaluate the feasibility and the health economic, clinical and patient-reported outcomes of implementing PanCareFollowUp Care as usual care in four European countries. METHODS AND ANALYSIS: In this prospective, longitudinal cohort study with at least 6 months of follow-up, 800 childhood cancer survivors will receive the PanCareFollowUp Care Intervention across four study sites in Belgium, Czech Republic, Italy and Sweden, representing different healthcare systems. The PanCareFollowUp Care Intervention will be evaluated according to the Reach, Effectiveness, Adoption, Implementation and Maintenance framework. Clinical and research data are collected through questionnaires, a clinic visit for multiple medical assessments and a follow-up call. The primary outcome is empowerment, assessed with the Health Education Impact Questionnaire. A central data centre will perform quality checks, data cleaning and data validation, and provide support in data analysis. Multilevel models will be used for repeated outcome measures, with subgroup analysis, for example, by study site, attained age, sex or diagnosis. ETHICS AND DISSEMINATION: This study will be conducted in accordance with the guidelines of Good Clinical Practice and the Declaration of Helsinki. The study protocol has been reviewed and approved by all relevant ethics committees. The evidence and insights gained by this study will be summarised in a Replication Manual, also including the tools required to implement the PanCareFollowUp Care Intervention in other countries. This Replication Manual will become freely available through PanCare and will be disseminated through policy and press releases. TRIAL REGISTRATION NUMBER: Netherlands Trial Register (NL8918; https://www.trialregister.nl/trial/8918).
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Sobreviventes de Câncer , Neoplasias , Adulto , Criança , Humanos , Assistência ao Convalescente , Estudos Prospectivos , Estudos de Viabilidade , Estudos Longitudinais , Neoplasias/terapia , Europa (Continente)RESUMO
Adherence to inhaled corticosteroids (ICS) in asthma is suboptimal. Patients may rely more on their short-acting beta-agonist (SABA) to control symptoms, which may increase their risk of exacerbations and uncontrolled asthma. Our objective is to describe ICS adherence and SABA use among Dutch primary care patients with asthma, and how these are related to exacerbations and self-reported asthma control. Patients aged ≥12 years diagnosed with asthma who received ≥2 inhalation medication prescriptions in 2016 were selected from the Nivel Primary Care Database. ICS adherence (continuous measure of medication availability), SABA use (number of prescriptions), exacerbations (short courses of oral corticosteroids with daily dose ≥20 mg), and asthma control (self-reported with the Asthma Control Questionnaire; ACQ) were computed. Multilevel logistic regression analyses, to account for clustering of patients within practices, were used to model associations between ICS adherence, SABA use, and asthma outcomes. Prescription data of 13,756 patients were included. ICS adherence averaged 62% (SD: 32.7), 14% of patients received ≥3 SABA prescriptions, and 13% of patients experienced ≥1 exacerbation. Self-reported asthma control was available for 2183 patients of whom 51% reported controlled asthma (ACQ-5 score <0.75). A higher number of SABA prescriptions was associated with a higher risk of exacerbations and uncontrolled asthma, even with high ICS adherence (>90%). ICS adherence was not associated with exacerbations, whilst poor ICS adherence (≤50%) was associated with uncontrolled asthma. In conclusion, increased SABA use is an important and easily identifiable signal for general practitioners to discuss asthma self-management behavior with their patients.
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Antiasmáticos , Asma , Humanos , Administração por Inalação , Corticosteroides/uso terapêutico , Antiasmáticos/uso terapêutico , Asma/tratamento farmacológico , Asma/diagnóstico , Atenção Primária à SaúdeRESUMO
OBJECTIVES: Heart failure (HF) is a commonly occurring health problem with high mortality and morbidity. If potential cases could be detected earlier, it may be possible to intervene earlier, which may slow progression in some patients. Preferably, it is desired to reuse already measured data for screening of all persons in an age group, such as general practitioner (GP) data. Furthermore, it is essential to evaluate the number of people needed to screen to find one patient using true incidence rates, as this indicates the generalisability in the true population. Therefore, we aim to create a machine learning model for the prediction of HF using GP data and evaluate the number needed to screen with true incidence rates. DESIGN, SETTINGS AND PARTICIPANTS: GP data from 8543 patients (-2 to -1 year before diagnosis) and controls aged 70+ years were obtained retrospectively from 01 January 2012 to 31 December 2019 from the Nivel Primary Care Database. Codes about chronic illness, complaints, diagnostics and medication were obtained. Data were split in a train/test set. Datasets describing demographics, the presence of codes (non-sequential) and upon each other following codes (sequential) were created. Logistic regression, random forest and XGBoost models were trained. Predicted outcome was the presence of HF after 1 year. The ratio case:control in the test set matched true incidence rates (1:45). RESULTS: Sole demographics performed average (area under the curve (AUC) 0.692, CI 0.677 to 0.706). Adding non-sequential information combined with a logistic regression model performed best and significantly improved performance (AUC 0.772, CI 0.759 to 0.785, p<0.001). Further adding sequential information did not alter performance significantly (AUC 0.767, CI 0.754 to 0.780, p=0.07). The number needed to screen dropped from 14.11 to 5.99 false positives per true positive. CONCLUSION: This study created a model able to identify patients with pending HF a year before diagnosis.
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Clínicos Gerais , Insuficiência Cardíaca , Algoritmos , Estudos de Casos e Controles , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/epidemiologia , Humanos , Aprendizado de Máquina , Estudos RetrospectivosRESUMO
BACKGROUND: Follow-up for cancer typically occurs in secondary care, and improved survival has increased demands on these services. Other care models may alleviate this burden, such as moving (parts of) follow-up care for curatively treated patients from secondary to primary care (care substitution). AIM: To explore the opinions of GPs regarding the potential benefits, barriers, and requirements of care substitution for breast and colorectal cancer. DESIGN AND SETTING: A qualitative study of the opinions of purposively sampled GPs in Dutch primary care. METHOD: Focus group sessions and individual semi-structured interviews were recorded and transcribed verbatim. Data were analysed by two independent researchers using thematic analysis. RESULTS: Two focus groups (n = 14) were conducted followed by nine individual interviews. Three main themes were identified: perceived benefits, perceived barriers, and perceived requirements. Perceived benefits included better accessibility and continuity of care, and care closer to patients' homes. Uncertainty about cancer-related competences and practical objections were perceived as barriers. Requirements included close specialist collaboration, support from patients for this change, and stepwise implementation to avoid loss of existing care quality. CONCLUSION: Most GPs reported that they were not in favour of complete care substitution, but that primary care could have greater formal involvement in oncological follow-up if there is close collaboration with secondary care (that is, shared care), support from patients, sufficient resource allocation, stepwise implementation with clear guidelines, and monitoring of quality. Clear and broadly supported protocols need to be developed and tested before implementing follow-up in primary care.
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Clínicos Gerais , Neoplasias , Assistência ao Convalescente , Atitude do Pessoal de Saúde , Seguimentos , Humanos , Neoplasias/terapia , Pesquisa QualitativaRESUMO
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.
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Neoplasias da Mama , Sobreviventes de Câncer , Distúrbios do Início e da Manutenção do Sono , Assistência ao Convalescente , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/cirurgia , Sobreviventes de Câncer/psicologia , Estudos Transversais , Fadiga/epidemiologia , Fadiga/etiologia , Feminino , Humanos , Análise de Classes Latentes , Qualidade de Vida , Distúrbios do Início e da Manutenção do Sono/complicações , Distúrbios do Início e da Manutenção do Sono/etiologia , Inquéritos e Questionários , Sobreviventes/psicologiaRESUMO
Purpose: Limited information is available concerning primary care providers' encountered barriers and facilitators when implementing falls prevention and providing interventions in a real-life setting. This study aimed to identify barriers and facilitators when i) implementing a falls risk assessment strategy at GP practices and among community nurses and ii) providing evidence-based falls prevention interventions in a real-life setting to independently living, frail older people. Methods: A researcher's journal was maintained during the implementation of a falls risk assessment strategy, which entailed notes from informal conversations with GPs, practice nurses and community nurses. After implementation, two online focus groups with GPs, practice and community nurses, physio- and exercise therapists were conducted. Data were thematically analyzed. Results: Data were collected from 32 GPs, 13 practice nurses, eight community nurses, nine physiotherapists, and two exercise therapists. The GPs and nurses acknowledged that falls prevention is part of their job, meaningful, and that they have sufficient knowledge and skills to offer falls prevention. Collaboration, a previously implemented care program for older people, resources, reimbursement for interventions, and patients' motivation, awareness and health issues were considered to be important factors for the implementation of falls prevention. Physio- and exercise therapists described collaboration with different disciplines, receiving sufficient referrals, reimbursements, intensity and set-up of the interventions, and patients' motivation, expectations, goals, self-confidence, awareness, and health issues as important factors when providing falls prevention interventions. Conclusion: This study identified care provider-, context-, patient-, and innovation (strategy)-related barriers and facilitators when implementing falls prevention and providing interventions in primary care. Development of a more successful implementation strategy should focus on intensifying collaboration, reimbursement for interventions, availability of resources, and patients' lack of motivation and health issues. Hence, falls prevention may become more structurally applied, reducing a major threat for the quality of life of independently living older people.
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Qualidade de Vida , Encaminhamento e Consulta , Idoso , Grupos Focais , Humanos , Atenção Primária à SaúdeRESUMO
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.
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Neoplasias da Mama , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/terapia , Atenção à Saúde , Registros Eletrônicos de Saúde , Feminino , Humanos , Armazenamento e Recuperação da Informação , Sistema de RegistrosRESUMO
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.
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Neoplasias da Mama , Sobreviventes de Câncer , Linfedema , Osteoporose , Neoplasias da Mama/terapia , Feminino , HumanosRESUMO
BACKGROUND: Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union-funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. PATIENTS AND METHODS: The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan. RESULTS: We developed the key components of the PanCareFollowUp Care Intervention: a PanCareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project. CONCLUSIONS: The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors' health and well-being.
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Sobreviventes de Câncer , Neoplasias , Adolescente , Humanos , Neoplasias/terapia , Qualidade de Vida , Sobreviventes , Sobrevivência , Adulto JovemRESUMO
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.
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Acidentes por Quedas , Clínicos Gerais , Acidentes por Quedas/prevenção & controle , Idoso , Medo , Humanos , Limitação da Mobilidade , Qualidade de VidaRESUMO
OBJECTIVE: Although several falls risk assessment tools are available, it is unclear which have been validated and which would be most suitable for primary care practices. This systematic review aims to identify the most suitable falls risk assessment tool for the primary care setting (ie, requires limited time, no expensive equipment and no additional space) and that has good predictive performance in the assessment of falls risk among older people living independently. DESIGN: A systematic review based on prospective studies. METHODS: An extensive search was conducted in the following databases: PubMed, Embase, CINAHL, Cochrane and PsycINFO. Tools were excluded if they required expensive and/or advanced software that is not usually available in primary care units and if they had not been validated in at least three different studies. Of 2492 articles published between January 2000 and July 2020, 27 were included. RESULTS: Six falls risk assessment tools were identified: Timed Up and Go (TUG) test, Gait Speed test, Berg Balance Scale, Performance Oriented Mobility Assessment, Functional Reach test and falls history. Most articles reported area under the curve (AUC) values ranging from 0.5 to 0.7 for these tools. Sensitivity and specificity varied substantially across studies (eg, TUG, sensitivity:10%-83.3%, specificity:28.4%-96.6%). CONCLUSIONS: Given that none of the falls risk assessment tools had sufficient predictive performance (AUC <0.7), other ways of assessing high falls risk among independently living older people in primary care should be investigated. For now, the most suitable way to assess falls risk in the primary care setting appears to involve asking patients about their falls history. Compared with the other five tools, the falls history requires the least amount of time, no expensive equipment, no training and no spatial adjustments. The clinical judgement of healthcare professionals continues to be most important, as it enables the identification of high falls risk even for patients with no falls history. TRIAL REGISTRAION NUMBER: The Netherlands Trial Register, NL7917; Pre-results.
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Acidentes por Quedas , Modalidades de Fisioterapia , Idoso , Humanos , Atenção Primária à Saúde , Estudos Prospectivos , Velocidade de CaminhadaRESUMO
BACKGROUND: The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. METHODS: The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline-based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. RESULTS: Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years. CONCLUSIONS: The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions.
Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Cuidadores/economia , Cuidadores/psicologia , Sobrevivência , Europa (Continente) , Humanos , Qualidade da Assistência à SaúdeRESUMO
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.