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1.
Cancer ; 130(8): 1349-1358, 2024 Apr 15.
Article in English | MEDLINE | ID: mdl-38100618

ABSTRACT

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.


Subject(s)
Cancer Survivors , Neoplasms , Child , Humans , Neoplasms/epidemiology , Neoplasms/therapy , Neoplasms/pathology , Self Report , Survivorship , Survivors
2.
Support Care Cancer ; 32(5): 323, 2024 May 02.
Article in English | MEDLINE | ID: mdl-38695938

ABSTRACT

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.


Subject(s)
Aftercare , Breast Neoplasms , Female , Humans , Aftercare/methods , Breast Neoplasms/therapy , Cost-Benefit Analysis , Follow-Up Studies , Precision Medicine/methods
3.
BMC Med Res Methodol ; 22(1): 124, 2022 04 27.
Article in English | MEDLINE | ID: mdl-35477392

ABSTRACT

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.


Subject(s)
Breast Neoplasms , Breast Neoplasms/diagnosis , Breast Neoplasms/epidemiology , Breast Neoplasms/therapy , Delivery of Health Care , Electronic Health Records , Female , Humans , Information Storage and Retrieval , Registries
4.
Support Care Cancer ; 30(10): 7873-7883, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35727375

ABSTRACT

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.


Subject(s)
Breast Neoplasms , Cancer Survivors , Sleep Initiation and Maintenance Disorders , Aftercare , Breast Neoplasms/epidemiology , Breast Neoplasms/surgery , Cancer Survivors/psychology , Cross-Sectional Studies , Fatigue/epidemiology , Fatigue/etiology , Female , Humans , Latent Class Analysis , Quality of Life , Sleep Initiation and Maintenance Disorders/complications , Sleep Initiation and Maintenance Disorders/etiology , Surveys and Questionnaires , Survivors/psychology
5.
Health Expect ; 24(4): 1300-1311, 2021 08.
Article in English | MEDLINE | ID: mdl-33938597

ABSTRACT

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.


Subject(s)
Multiple Chronic Conditions , Self-Management , Humans , Multimorbidity , Multiple Chronic Conditions/therapy , Primary Health Care , Surveys and Questionnaires
6.
Eur J Cancer Care (Engl) ; 30(5): e13432, 2021 Sep.
Article in English | MEDLINE | ID: mdl-33704843

ABSTRACT

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.


Subject(s)
Colorectal Neoplasms , Neoplasm Recurrence, Local , Colorectal Neoplasms/diagnosis , Follow-Up Studies , Humans , Neoplasm Recurrence, Local/diagnosis , Primary Health Care , Sensitivity and Specificity
7.
BMC Fam Pract ; 22(1): 190, 2021 09 21.
Article in English | MEDLINE | ID: mdl-34548022

ABSTRACT

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.


Subject(s)
Accidental Falls , General Practitioners , Accidental Falls/prevention & control , Aged , Fear , Humans , Mobility Limitation , Quality of Life
8.
Pediatr Blood Cancer ; 67(11): e28611, 2020 11.
Article in English | MEDLINE | ID: mdl-32881287

ABSTRACT

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.


Subject(s)
Cancer Survivors/statistics & numerical data , Cost of Illness , Neoplasms/therapy , Outcome Assessment, Health Care/statistics & numerical data , Child , Humans , Morbidity , Neoplasms/epidemiology
9.
Pediatr Blood Cancer ; 66(8): e27774, 2019 08.
Article in English | MEDLINE | ID: mdl-31033160

ABSTRACT

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.


Subject(s)
Aftercare/standards , Cancer Survivors/statistics & numerical data , Neoplasms/therapy , Physicians, Primary Care/statistics & numerical data , Practice Patterns, Physicians'/standards , Quality of Health Care , Adolescent , Adult , Case-Control Studies , Child , Child, Preschool , Female , Follow-Up Studies , Humans , Male , Prognosis , Surveys and Questionnaires , Survival Rate , Young Adult
10.
BMC Public Health ; 19(1): 512, 2019 May 06.
Article in English | MEDLINE | ID: mdl-31060532

ABSTRACT

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.


Subject(s)
Epidemiologic Methods , Incidence , Prevalence , Adolescent , Adult , Aged , Aged, 80 and over , Child , Child, Preschool , Databases, Factual , Electronic Health Records , Female , Humans , Infant , Infant, Newborn , Male , Middle Aged , Primary Health Care , Reproducibility of Results , Young Adult
11.
Eur J Public Health ; 29(1): 88-93, 2019 02 01.
Article in English | MEDLINE | ID: mdl-30016426

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , Cardiovascular Diseases/prevention & control , General Practitioners/psychology , General Practitioners/statistics & numerical data , Practice Patterns, Physicians'/statistics & numerical data , Primary Health Care/statistics & numerical data , Adult , Cardiovascular Diseases/epidemiology , Czech Republic/epidemiology , Denmark/epidemiology , Female , Greece/epidemiology , Humans , Male , Middle Aged , Netherlands/epidemiology , Risk Factors , Surveys and Questionnaires , Sweden/epidemiology
12.
Fam Pract ; 35(4): 383-398, 2018 07 23.
Article in English | MEDLINE | ID: mdl-29385438

ABSTRACT

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.


Subject(s)
Cardiovascular Diseases/prevention & control , Health Personnel , Metabolic Diseases/prevention & control , Primary Health Care , Attitude of Health Personnel , Humans , Preventive Health Services/methods , Qualitative Research
13.
BMC Palliat Care ; 17(1): 74, 2018 May 11.
Article in English | MEDLINE | ID: mdl-29747628

ABSTRACT

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.


Subject(s)
Breast Neoplasms/therapy , Decision Making , Decision Support Techniques , Patient Participation/methods , Breast Neoplasms/complications , Female , Humans , Patient Participation/psychology
14.
Popul Health Metr ; 15(1): 13, 2017 04 05.
Article in English | MEDLINE | ID: mdl-28381229

ABSTRACT

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.


Subject(s)
Chronic Disease/epidemiology , Chronic Disease/mortality , Diabetes Mellitus/epidemiology , Diabetes Mellitus/mortality , Female , General Practice/organization & administration , General Practice/statistics & numerical data , Heart Failure/epidemiology , Heart Failure/mortality , Humans , Incidence , Male , Models, Statistical , Netherlands/epidemiology , Osteoarthritis, Knee/epidemiology , Osteoarthritis, Knee/mortality , Prevalence , Pulmonary Disease, Chronic Obstructive/epidemiology , Pulmonary Disease, Chronic Obstructive/mortality
15.
Fam Pract ; 34(2): 154-160, 2017 04 01.
Article in English | MEDLINE | ID: mdl-28207044

ABSTRACT

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.


Subject(s)
Breast Neoplasms/diagnosis , Colorectal Neoplasms/diagnosis , General Practitioners/education , Melanoma/diagnosis , Neoplasm Recurrence, Local , Practice Guidelines as Topic , Breast Neoplasms/therapy , Colorectal Neoplasms/therapy , Family Practice , Female , Humans , Mammography , Melanoma/therapy , Practice Patterns, Physicians'/standards , Risk Management
16.
Eur J Public Health ; 27(4): 616-620, 2017 08 01.
Article in English | MEDLINE | ID: mdl-28013246

ABSTRACT

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.


Subject(s)
Guideline Adherence/statistics & numerical data , Neoplasms/therapy , Breast Neoplasms/therapy , Colorectal Neoplasms/therapy , Female , Hospitals/statistics & numerical data , Humans , Lung Neoplasms/therapy , Male , Melanoma/therapy , Netherlands , Practice Guidelines as Topic , Prostatic Neoplasms/therapy , Registries
17.
Cancer ; 122(6): 962-70, 2016 Mar 15.
Article in English | MEDLINE | ID: mdl-26748907

ABSTRACT

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.


Subject(s)
Chronic Disease , Health Services/statistics & numerical data , Health Status , Neoplasms , Quality of Life , Survivors/psychology , Survivors/statistics & numerical data , Adult , Aged , Chronic Disease/psychology , Comorbidity , Female , Humans , Male , Middle Aged , Neoplasms/psychology , Netherlands/epidemiology , Office Visits/statistics & numerical data , Registries , Sampling Studies , Self Report , Surveys and Questionnaires
18.
Pharmacoepidemiol Drug Saf ; 25(9): 1033-41, 2016 09.
Article in English | MEDLINE | ID: mdl-27133740

ABSTRACT

PURPOSE: Complex medication management in older people with multiple chronic conditions can introduce practice variation in polypharmacy prevalence. This study aimed to determine the inter-practice variation in polypharmacy prevalence and examine how this variation was influenced by patient and practice characteristics. METHODS: This cohort study included 45,731 patients aged 55 years and older with at least one prescribed medication from 126 general practices that participated in NIVEL Primary Care Database in the Netherlands. Medication dispensing data of the year 2012 were used to determine polypharmacy. Polypharmacy was defined as the chronic and simultaneous use of at least five different medications. Multilevel logistic regression models were constructed to quantify the polypharmacy prevalence variation between practices. Patient characteristics (age, gender, socioeconomic status, number, and type of chronic conditions) and practice characteristics (practice location and practice population) were added to the models. RESULTS: After accounting for differences in patient and practice characteristics, polypharmacy rates varied with a factor of 2.4 between practices (from 12.4% to 30.1%) and an overall mean of 19.8%. Age and type of conditions were highly positively associated with polypharmacy, and to a lesser extent a lower socioeconomic status. CONCLUSIONS: Considerable variation in polypharmacy rates existed between general practices, even after accounting for patient and practice characteristics, which suggests that there is not much agreement concerning medication management in this complex patient group. Initiatives that could reduce inappropriate heterogeneity in medication management can add value to the care delivered to these patients. Copyright © 2016 John Wiley & Sons, Ltd.


Subject(s)
Inappropriate Prescribing/statistics & numerical data , Polypharmacy , Practice Patterns, Physicians'/statistics & numerical data , Prescription Drugs/administration & dosage , Primary Health Care/statistics & numerical data , Age Factors , Aged , Aged, 80 and over , Cohort Studies , Female , Humans , Logistic Models , Male , Middle Aged , Netherlands , Practice Patterns, Physicians'/standards , Prevalence , Primary Health Care/organization & administration , Socioeconomic Factors
19.
BMC Fam Pract ; 17: 60, 2016 06 01.
Article in English | MEDLINE | ID: mdl-27245448

ABSTRACT

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.


Subject(s)
Family Practice/statistics & numerical data , Neoplasms/diagnosis , Office Visits/statistics & numerical data , Physician's Role , Adolescent , British Columbia , Cardiology/statistics & numerical data , Case-Control Studies , Child , Child, Preschool , Female , General Surgery/statistics & numerical data , Humans , Infant , Infant, Newborn , Male , Neoplasms/therapy , Nervous System Diseases/therapy , Office Visits/trends , Pediatrics/statistics & numerical data , Respiratory Tract Infections/therapy , Symptom Assessment , Time Factors
20.
BMC Fam Pract ; 17: 11, 2016 Feb 01.
Article in English | MEDLINE | ID: mdl-26831125

ABSTRACT

BACKGROUND: In a gatekeeper system, primary care physicians and patients jointly decide whether or not medical specialist care is needed. However, it is the patient who decides to actually use the referral. Referral non-compliance could delay diagnosis and treatment. The objective of this study was to assess patient compliance with a referral to medical specialist care and identify patient and practice characteristics that are associated with it. METHODS: Observational study using data on 48,784 referrals to medical specialist care derived from electronic medical records of 58 general practices for the period 2008-2010. Referral compliance was based on claims data of medical specialist care. Logistic multilevel regression analyses were conducted to determine associations between patient and general practice characteristics and referral compliance. RESULTS: In 86.6% of the referrals, patients complied. Patient and not practice characteristics were significantly associated with compliance. Patients from deprived urban areas and patients aged 18-44 years were less likely to comply, whereas patients aged 65 years and older were more likely to comply. CONCLUSION: About 1 in 8 patients do not use their referral. These patients may not receive adequate care. Demographic and socio-economic factors appear to affect compliance. The results of this study may be used to make general practitioners more aware that some patients are more likely to be noncompliant with referrals.


Subject(s)
General Practice/statistics & numerical data , Patient Compliance/statistics & numerical data , Referral and Consultation/statistics & numerical data , Social Class , Specialization , Urban Population/statistics & numerical data , Adolescent , Adult , Age Factors , Aged , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Infant , Infant, Newborn , Logistic Models , Male , Middle Aged , Multilevel Analysis , Netherlands , Socioeconomic Factors , Young Adult
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