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.

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.

Optimising personal continuity for older patients in general practice: a cluster randomised stepped wedge pragmatic trial.

AIM: To evaluate the effectiveness, feasibility and acceptability of a multicomponent intervention for improving personal continuity for older patients in general practice. DESIGN: A cluster randomised three-wedged, pragmatic trial during 18 months. SETTING: 32 general practices in the Netherlands. PARTICIPANTS: 221 general practitioners (GPs), practice assistants and other practice staff were included. Practices were instructed to include a random sample of 1050 patients aged 65 or older at baseline and 12-month follow-up. INTERVENTION: The intervention took place at practice level and included opTimise persOnal cOntinuity for oLder (TOOL)-kit: a toolbox containing 34 strategies to improve personal continuity. OUTCOMES: Data were collected at baseline and at six 3-monthly follow-up measurements. Primary outcome measure was experienced continuity of care at the patient level measured by the Nijmegen Continuity Questionnaire (NCQ) with subscales for personal continuity (GP knows me and GP shows commitment) and team/cross-boundary continuity at 12-month follow-up. Secondary outcomes were measured in GPs, practice assistants and other practice staff and included work stress and satisfaction and perceived level of personal continuity. In addition, a process evaluation was undertaken among GPs, practice assistants and other practice staff to assess the acceptability and feasibility of the intervention. RESULTS: No significant effect of the intervention was observed on NCQ subscales GP knows me (adjusted mean difference: 0.05 (95% CI -0.05 to 0.15), p=0.383), GP shows commitment (0.03 (95% CI -0.08 to 0.14), p=0.668) and team/cross-boundary (0.01 (95% CI -0.06 to 0.08), p=0.911). All secondary outcomes did not change significantly during follow-up. Process evaluation among GPs, practice assistants and other practice staff showed adequate acceptability of the intervention and partial implementation due to the COVID-19 pandemic and a high perceived workload. CONCLUSION: Although participants viewed TOOL-kit as a practical and accessible toolbox, it did not improve personal continuity as measured with the NCQ. The absence of an effect may be explained by the incomplete implementation of TOOL-kit into practice and the choice of general outcome measures instead of outcomes more specific for the intervention. TRIAL REGISTRATION NUMBER: International Clinical Trials registry Platform (ICTRP), trial NL8132 (URL: ICTRP Search Portal (who.int).

Personal Continuity and Appropriate Prescribing in Primary Care.

PURPOSE: Personal continuity between patient and physician is a core value of primary care. Although previous studies suggest that personal continuity is associated with fewer potentially inappropriate prescriptions, evidence on continuity and prescribing in primary care is scarce. We aimed to determine the association between personal continuity and potentially inappropriate prescriptions, which encompasses potentially inappropriate medications (PIMs) and potential prescribing omissions (PPOs), by family physicians among older patients. METHODS: We conducted an observational cohort study using routine care data from patients enlisted in 48 Dutch family practices from 2013 to 2018. All 25,854 patients aged 65 years and older having at least 5 contacts with their practice in 6 years were included. We calculated personal continuity using 3 established measures: the usual provider of care measure, the Bice-Boxerman Index, and the Herfindahl Index. We used the Screening Tool of Older Person's Prescriptions (STOPP) and the Screening Tool to Alert doctors to Right Treatment (START) specific to the Netherlands version 2 criteria to calculate the prevalence of potentially inappropriate prescriptions. To assess associations, we conducted multilevel negative binomial regression analyses, with and without adjustment for number of chronic conditions, age, and sex. RESULTS: The patients' mean (SD) values for the usual provider of care measure, the Bice-Boxerman Continuity of Care Index, and the Herfindahl Index were 0.70 (0.19), 0.55 (0.24), and 0.59 (0.22), respectively. In our population, 72.2% and 74.3% of patients had at least 1 PIM and PPO, respectively; 30.9% and 34.2% had at least 3 PIMs and PPOs, respectively. All 3 measures of personal continuity were positively and significantly associated with fewer potentially inappropriate prescriptions. CONCLUSIONS: A higher level of personal continuity is associated with more appropriate prescribing. Increasing personal continuity may improve the quality of prescriptions and reduce harmful consequences.

Patient characteristics and factors contributing to recurrence of bacterial vaginosis presented in primary care.

BACKGROUND: Bacterial vaginosis (BV) is a common problem in primary care. BV symptoms often have a negative impact on patients' quality of life and may predispose to gynaecological problems. Some patients experience recurring episodes of BV. This study's objective is to identify possible factors that may be associated with BV recurrence and describe the characteristics of these patients and interventions performed by general practitioners. METHODS: In this retrospective cohort study, we used data from a primary care registration network in the Netherlands in the period 2015-2020. We analysed differences between patients with recurrent BV and patients with a single episode of BV in terms of characteristics and interventions performed by general practitioners. RESULTS: We found that patients with recently prescribed antibiotics, and a medical history of sexually transmitted infections and/or Candidiasis significantly more often presented with recurrent BV. Patients with recurrent BV had more remote consultations and less in-person consultations than single-episode patients. The reason for encounter was more often a request for medication. Regarding GPs' diagnostic and therapeutic interventions, microbiological tests were more frequently performed in recurrent BV patients. Moreover, most patients in both groups were prescribed oral metronidazole most frequently. CONCLUSIONS: Our findings might help GPs to better recognise patients at risk of recurrence. GPs could re-evaluate their approach to the diagnosis and treatment of recurrent BV, opting for in-person consultation and using standardised diagnostic criteria and microbiological testing in patients with recurrent complaints. Antibiotic use for other conditions in these patients may lead to new BV episodes.

General practice and patient characteristics associated with personal continuity: a mixed-methods study.

BACKGROUND: Personal continuity of care is a core value of general practice. It is increasingly threatened by societal and healthcare changes. AIM: To investigate the association between personal continuity and both practice and patient characteristics; and to incorporate GPs' views to enrich and validate the quantitative findings. DESIGN AND SETTING: A mixed-methods study based on observational, routinely collected healthcare data from 269 478 patients from 48 Dutch general practices (2013-2018) and interviews with selected GPs. METHOD: First, four different personal continuity outcome measures were calculated relating to eight practice and 12 patient characteristics using multilevel linear regression analyses. Second, a thematic analysis was performed of semi-structured interviews with 10 GPs to include their views on factors contributing to personal (dis) continuity. These GPs worked at the 10 practices with the largest difference between calculated and model-estimated personal continuity. RESULTS: Both a larger number of usual GPs working in a practice and a larger percentage of patient contacts with locum GPs were dose-dependently associated with lower personal continuity (highest versus lowest quartile -0.094 and -0.092, respectively, P<0.001), whereas days since registration with the general practice was dose-dependently associated with higher personal continuity (highest versus lowest quartile +0.017, P<0.001). Older age, number of chronic conditions, and contacts were also associated with higher personal continuity. The in-depth interviews identified three key themes affecting personal continuity: team composition, practice organisation, and the personal views of the GPs. CONCLUSION: Personal continuity is associated with practice and patient characteristics. The dose-dependent associations suggest a causal relationship and, complemented by GPs' views, may provide practical targets to improve personal continuity directly.

Help-seeking behaviour in primary care of men and women with a history of abuse: A Dutch cohort study.

BACKGROUND: Previous studies show an association between a history of abuse and higher care demand. However, studies in general practice regarding help-seeking behaviour by patients (mainly male patients) with a history of abuse are scarce. OBJECTIVES: To analyse help-seeking behaviour in general practice of men and women with a history of abuse. METHODS: A cohort study using data from a Dutch primary care registration network from 2015 to 2019. We included all patients aged ≥ 18 years who indicated on a questionnaire that they did or did not have a history of abuse. We analysed differences in contact frequency, types of contact, reason for encounter and diagnoses between men and women with or without a history of abuse. RESULTS: The questionnaire had a response rate of 59% and resulted in 11,140 patients, of which 1271 indicated a history of abuse. Men and women with a history of abuse contact the general practitioner (GP) 1.5 times (95% CI 1.42-1.60) more often than men and women without a history of abuse, especially for psychological (rate ratio 1.97, 95% CI 1.79-2.17) and social (rate ratio 1.93, 95% CI 1.68-2.22) problems. Moreover, when diagnosed with a psychological or social problem, patients with a history of abuse contact the GP twice more often for these problems. CONCLUSION: Compared to men and women without a history of abuse, men and women with a history of abuse visit their GP more often, particularly for psychological and social problems.

Optimising personal continuity for older patients in general practice: a study protocol for a cluster randomised stepped wedge pragmatic trial.

BACKGROUND: Continuity of care, in particular personal continuity, is a core principle of general practice and is associated with many benefits such as a better patient-provider relationship and lower mortality. However, personal continuity is under pressure due to changes in society and healthcare. This affects older patients more than younger patients. As the number of older patients will double the coming decades, an intervention to optimise personal continuity for this group is highly warranted. METHODS: Following the UK Medical Research Council framework for complex Interventions, we will develop and evaluate an intervention to optimise personal continuity for older patients in general practice. In phase 0, we will perform a literature study to provide the theoretical basis for the intervention. In phase I we will define the components of the intervention by performing surveys and focus groups among patients, general practitioners, practice assistants and practice nurses, concluded by a Delphi study among members of our group. In phase II, we will test and finalise the intervention with input from a pilot study in two general practices. In phase III, we will perform a stepped wedge cluster randomised pragmatic trial. The primary outcome measure is continuity of care from the patients' perspective, measured by the Nijmegen Continuity Questionnaire. Secondary outcome measures are level of implementation, barriers and facilitators for implementation, acceptability and feasibility of the intervention. In phase IV, we will establish the conditions for large-scale implementation. DISCUSSION: This is the first study to investigate an intervention for improving personal continuity for older patients in general practice. If proven effective, our intervention will enable General practitioners to improve the quality of care for their increasing population of older patients. The pragmatic design of the study will enable evaluation in real-life conditions, facilitating future implementation. TRIAL REGISTRATION NUMBER: Netherlands Trial Register, trial NL8132 . Registered 2 November 2019.

Sex differences in the trajectories to diagnosis of patients presenting with common somatic symptoms in primary care: an observational cohort study.

OBJECTIVE: Little insight exists into sex differences in diagnostic trajectories for common somatic symptoms. This study aims to quantify sex differences in the provided primary care diagnostic interventions for common somatic symptoms, as well as the consequences hereof for final diagnoses. METHODS: In this observational cohort study, we used real-world clinical data from the Dutch Family Medicine Network (N = 34,268 episodes of care related to common somatic symptoms; 61,4% female). The association between patients' sex on the one hand, and diagnostic interventions and disease diagnoses on the other hand, were assessed using multilevel multiple logistic regression analyses. Structural equation modelling was used to estimate a mediation model with multiple parallel mediators to assess whether the fewer disease diagnoses given to female patients were mediated by the fewer diagnostic interventions female patients receive, compared to male patients. RESULTS: Women received fewer physical examinations (OR = 0.84, 95%CI = 0.79-0.89), diagnostic imaging (OR = 0.92, 95%CI = 0.84-0.99) and specialist referrals (OR = 0.85, 95%CI = 0.79-0.91) than men, but more laboratory diagnostics (OR = 1.27, 95%CI = 1.19-1.35). Women received disease diagnoses less often than men for their common somatic symptoms (OR = 0.94, 95%CI = 0.89-0.98). Mediation analysis showed that the fewer disease diagnosis in female patients were mediated by the fewer diagnostic interventions conducted in women compared to men. CONCLUSION: This study shows that sex inequalities are present in primary care diagnostic trajectories of patients with common somatic symptoms and that these lead to unequal health outcomes in terms of diagnoses between women and men. FPs have to be aware of these inequalities to ensure equal high-quality care for all patients.

Sex differences in incidence of respiratory symptoms and management by general practitioners.

BACKGROUND: Differences between women and men play an important role in lung physiology and epidemiology of respiratory diseases, but also in the health care processes. OBJECTIVE: To analyse sex differences in patients encountering their general practitioner (GP) with respiratory symptoms with regard to incidence, GP's management and final diagnoses. METHODS: Retrospective cohort study, using data of the Dutch Practice Based Research Network. All patients who encountered their GP from 01-07-2013 until 30-06-2018 with a new episode of care starting with a reason for encounter in the respiratory category (R) of the ICPC-2 classification were included (n = 16 773). Multi-level logistic regression was used to analyse influence of patients' sex on management of GPs with adjustment for possible confounders. RESULTS: We found a significant higher incidence of respiratory symptoms in women than in men: 230/1000 patient years [95% confidence interval (CI) 227-232] and 186/1000 patient years (95% CI 183-189), respectively. When presenting with cough, GPs are more likely to perform physical examination [odds ratio (OR) 1.22; 95% CI 1.11-1.35] and diagnostic radiology (OR 1.25; 95% CI 1.08-1.44), but less likely to prescribe medication (OR 0.88; 95% CI 0.82-0.95) in men. When visiting the GP with dyspnoea, men more often undergo diagnostic imaging (OR 1.32; 95% CI 1.05-1.66) and are more often referred to a specialist (OR 1.35; 95% CI 1.13-1.62). CONCLUSIONS: Women encounter their GP more frequently with respiratory symptoms than men and GPs perform more diagnostic investigations in men. We suggest more research in general practice focussing on sex differences and possible confounders.

Preventing acute kidney injury in high-risk patients by temporarily discontinuing medication - an observational study in general practice.

BACKGROUND: Elderly, patients with chronic kidney disease (CKD) and patients with heart failure who continue using renin-angiotensin-aldosterone-system (RAAS) inhibitors, diuretics, or non-steroidal-anti-inflammatory drugs (NSAIDs) during times of fluid loss have a high risk of developing complications like acute kidney injury (AKI). The aim of this study was to assess how often advice to discontinue high-risk medication was offered to high-risk patients consulting the general practitioner (GP) with increased fluid loss. Furthermore, we assessed the number and nature of the complications that occurred after GP consultation. METHODS: We performed a cross-sectional study with patients from seven Dutch general practices participating in the Family Medicine Network between 1 and 6-2013 and 1-7-2018. We included patients who used RAAS-inhibitors, diuretics, or NSAIDs, and had at least one of the following risk factors: age ≥ 70 years, CKD, or heart failure. From this population, we selected patients with a 'dehydration-risk' episode (vomiting, diarrhoea, fever, chills, or gastrointestinal infection). We manually checked their electronic patient files and assessed the percentage of episodes in which advice to discontinue the high-risk medication was offered and whether a complication occurred in 3 months after the 'dehydration-risk' episode. RESULTS: We included 3607 high-risk patients from a total of 44.675 patients (8.1%). We found that patients were advised to discontinue the high-risk medication in 38 (4.6%) of 816 'dehydration-risk' episodes. In 59 of 816 episodes (7.1%) complications (mainly AKI) occurred. CONCLUSIONS: Dutch GPs do not frequently advise high-risk patients to discontinue high-risk medication during 'dehydration-risk' episodes. Complications occur frequently. Timely discontinuation of high-risk medication needs attention.

Incidence, presentation and management of Lyme disease in Dutch general practice.

BACKGROUND: Little is known about the presentation and management of Lyme disease in general practice. OBJECTIVE: To investigate the incidence of Lyme disease over a 6-year period, and its presentation and management in Dutch general practice. METHODS: Observational study using routine data from a practice-based research network in the Netherlands with 7 practices, 24 GPs and 30000 registered patients. From 2009 to 2014, we calculated the incidence of patients presenting with Lyme disease in general practice. We analysed patient characteristics and symptoms that patients presented with at first visit. Furthermore, we analysed General Practitioners' (GPs') diagnostic and therapeutic strategies, and adherence to the national guideline. RESULTS: Over a 6-year period, we found 212 episodes with clinical- or laboratory-based diagnosed Lyme disease, resulting in a mean incidence of 117 cases per 100000 patients per year. We did not identify a significant linear trend over time. The most frequently reported symptoms at first visit were rash (77%) and/or insect bite (58%). In 25% of patients, GPs performed a serological test, in 99% an antibiotic was prescribed and 11% were referred to a medical specialist. Frequently (in 46% of patients), the GP did not adhere to the guideline completely. CONCLUSION: This study shows that there is no linear trend in the incidence of Lyme disease over a 6-year period and that most patients present to GPs with unspecific symptoms like rash or insect bites. We show that GPs frequently (in 46% of patients) do not fully adhere to recommendations stated in the national guideline.

Urine cultures and antibiotics for urinary tract infections in Dutch general practice.

BACKGROUND: Urinary tract infections (UTIs) are common in general practice, and antibiotic resistance is often seen. Urine cultures are advised by the Dutch national UTI guideline for patients at high risk of UTI complications. Prudent use of antibiotics and taking into account national guidelines and urine culture results are important to combat antibiotic resistance in general practice. AIM: To identify subgroups of UTI patients in which the use of urine cultures and antibiotic prescriptions deviates from the national guidelines. METHODS: We investigated associations of several characteristics with urine culture orders in patients with UTI in 2015 from seven Dutch general practices (n=1295). These included subgroups at risk for UTI complications, comorbidities, age and history of UTI recurrence. In addition, we assessed the level of adherence to the guideline for antibiotic prescriptions in subgroups at risks for UTI complications. FINDINGS: Urine cultures were ordered in 17% (n=221) of patients, more frequently in high-risk patients (32%) than in low-risk patients (7%), for UTI complications (OR=6.4; 95% CI 4.6-9.0). In low-risk patients, 91% received antibiotics that were recommended in the guideline. For high-risk patients this percentage ranged widely, and was particularly low in the risk groups with signs of tissue invasion (29-50%). Diagnostic and therapeutic adequacy can still be improved by increasing the adherence to the guideline in UTI patients at high risk for complications. This may contribute to containing antibiotic resistance in UTI by ordering urine cultures and use the results to adjust prescriptions to antibiotic susceptibility of the uropathogen.

Change in frequency of patient requests for diagnostic screening and interventions during primary care encounters from 1985 to 2014.

Background: The reason why patients contact a care provider, the reason for encounter (RFE), reflects patients' personal needs and expectations regarding medical care. RFEs can be symptoms or complaints, but can also be requests for diagnostic or therapeutic interventions. Objectives: Over the past 30 years, we aim to analyse the frequency with which patients consult a GP to request an intervention, and to analyse the impact of these requests on the subsequent diagnostic process. Methods: We included all patients with a request for diagnostics, medication prescription or referral from 1985 to 2014. We analysed the number of requests, granted requests and interventions originating from a request. We compared the final diagnosis (symptom or disease diagnosis) between patients with and without a request. Design and Setting: This is a retrospective cohort study with data from Family Medicine Network, a Dutch primary healthcare registration network. Results: Over time, patients more often present to their GP with a request for intervention. GPs are increasingly compliant with these requests. Patients presenting with a request for intervention are more likely to be diagnosed with a symptom rather than a disease. Conclusion: This study provides insight into the changes in patients' and GPs' behaviour and patients' influence on the medical process, and confirms the clinical relevance of the RFE. This study could support GPs in daily practice when deciding whether or not to grant a request.

The Diagnostic Value of the Patient's Reason for Encounter for Diagnosing Cancer in Primary Care.

PURPOSE: Family physicians (FPs) have to recognize alarm symptoms and estimate the probability of cancer to manage these symptoms correctly. Mostly, patients start the consultation with a spontaneous statement on why they visit the doctor. This is also called the reason for encounter (RFE). It precedes the interaction and interpretation by FPs and patients. The aim of this study is to investigate the predictive value of alarm symptoms as the RFE for diagnosing cancer in primary care. DESIGN AND SETTING: Retrospective cohort study in a Dutch practice-based research network (Family Medicine Network). METHOD: We analyzed all patients >45 years of age listed in the practice-based research network, FaMe-net, in the period 1995 to 2014 (118.219 patient years). We focused on a selection of alarm symptoms as defined by the Dutch Cancer Society and Cancer Research UK. We calculated the positive predictive value (PPV) of alarm symptoms, spontaneously mentioned in the beginning of the consultation by the patient (RFE), for diagnosing cancer. RESULTS: The highest PPVs were found for patients spontaneously mentioning a breast lump (PPV 14.8%), postmenopausal bleeding (PPV 3.9%), hemoptysis (PPV 2.7%), rectal bleeding (PPV 2.6%), hematuria (PPV 2.2%) and change in bowel movements (PPV 1.8%). CONCLUSION: Patients think about going to their physician and think about their first uttered statements during the consultation. In the case of cancer, the diagnostic workup during the consultation on alarm symptoms will add to the predictive value of these reasons for encounter. However, it is important to realize that the statement made by the patient entering the consultation room has a significant predictive value in itself.

Experienced continuity of care in patients at risk for depression in primary care.

BACKGROUND: Existing studies about continuity of care focus on patients with a severe mental illness. OBJECTIVES: Explore the level of experienced continuity of care of patients at risk for depression in primary care, and compare these to those of patients with heart failure. METHODS: Explorative study comparing patients at risk for depression with chronic heart failure patients. Continuity of care was measured using a patient questionnaire and defined as ( 1 ) number of care providers contacted (personal continuity); ( 2 ) collaboration between care providers in general practice (team continuity) (six items, score 1-5); and ( 3 ) collaboration between GPs and care providers outside general practice (cross-boundary continuity) (four items, score 1-5). RESULTS: Most patients at risk for depression contacted several care providers throughout the care spectrum in the past year. They experienced high team continuity and low cross-boundary continuity. In their general practice, they contacted more different care providers for their illness than heart failure patients did (P < 0.01). Patients at risk for depression experienced a slightly better collaboration between these care providers in their practice: a mean score of 4.3 per item compared to 4.0 for heart failure patients (P = 0.03). The perceived cross-boundary continuity, however, was reversed: a mean score of 3.5 per item for patients at risk for depression, compared to 4.0 for heart failure patients (P = 0.01). CONCLUSION: The explorative comparison between patients at risk for depression and heart failure patients shows small differences in experienced continuity of care. This should be analysed further in a more robust study.

Measurement properties of questionnaires measuring continuity of care: a systematic review.

BACKGROUND: Continuity of care is widely acknowledged as a core value in family medicine. In this systematic review, we aimed to identify the instruments measuring continuity of care and to assess the quality of their measurement properties. METHODS: We did a systematic review using the PubMed, Embase and PsycINFO databases, with an extensive search strategy including 'continuity of care', 'coordination of care', 'integration of care', 'patient centered care', 'case management' and its linguistic variations. We searched from 1995 to October 2011 and included articles describing the development and/or evaluation of the measurement properties of instruments measuring one or more dimensions of continuity of care (1) care from the same provider who knows and follows the patient (personal continuity), (2) communication and cooperation between care providers in one care setting (team continuity), and (3) communication and cooperation between care providers in different care settings (cross-boundary continuity). We assessed the methodological quality of the measurement properties of each instrument using the COSMIN checklist. RESULTS: We included 24 articles describing the development and/or evaluation of 21 instruments. Ten instruments measured all three dimensions of continuity of care. Instruments were developed for different groups of patients or providers. For most instruments, three or four of the six measurement properties were assessed (mostly internal consistency, content validity, structural validity and construct validity). Six instruments scored positive on the quality of at least three of six measurement properties. CONCLUSIONS: Most included instruments have problems with either the number or quality of its assessed measurement properties or the ability to measure all three dimensions of continuity of care. Based on the results of this review, we recommend the use of one of the four most promising instruments, depending on the target population Diabetes Continuity of Care Questionnaire, Alberta Continuity of Services Scale-Mental Health, Heart Continuity of Care Questionnaire, and Nijmegen Continuity Questionnaire.

Heart failure patients' experiences with continuity of care and its relation to medication adherence: a cross-sectional study.

BACKGROUND: A growing number of health care providers are nowadays involved in heart failure care. This could lead to discontinuity and fragmentation of care, thus reducing trust and hence poorer medication adherence. This study aims to explore heart failure patients' experiences with continuity of care, and its relation to medication adherence. METHODS: We collected data from 327 primary care patients with chronic heart failure. Experienced continuity of care was measured using a patient questionnaire and by reviewing patients' medical records. Continuity of care was defined as a multidimensional concept including personal continuity (seeing the same doctor every time), team continuity (collaboration between care providers in general practice) and cross-boundary continuity (collaboration between general practice and hospital). Medication adherence was measured using a validated patient questionnaire. The relation between continuity of care and medication adherence was analysed by using chi-square tests. RESULTS: In total, 53% of patients stated not seeing any care provider in general practice in the last year concerning their heart failure. Of the patients who did contact a care provider in general practice, 46% contacted two or more care providers. Respectively 38% and 51% of patients experienced the highest levels of team and cross-boundary continuity. In total, 14% experienced low levels of team continuity and 11% experienced low levels of cross-boundary continuity. Higher scores on personal continuity were significantly related to better medication adherence (p < 0.01). No clear relation was found between team- or cross-boundary continuity and medication adherence. CONCLUSIONS: A small majority of patients that contacted a care provider in general practice for their heart failure, contacted only one care provider. Most heart failure patients experienced high levels of collaboration between care providers in general practice and between GP and cardiologist. However, in a considerable number of patients, continuity of care could still be improved. Efforts to improve personal continuity may lead to better medication adherence.

Measuring continuity of care: psychometric properties of the Nijmegen Continuity Questionnaire.

BACKGROUND: Recently, the Nijmegen Continuity Questionnaire (NCQ) was developed. It aims to measure continuity of care from the patient perspective across primary and secondary care settings. Initial pilot testing proved promising. AIM: To further examine the validity, discriminative ability, and reliability of the NCQ. DESIGN: A prospective psychometric instrument validation study in primary and secondary care in the Netherlands. METHOD: The NCQ was administered to patients with a chronic disease recruited from general practice (n = 145) and hospital outpatient departments (n = 123) (response rate 76%). A principal component analysis was performed to confirm three subscales that had been found previously. Construct validity was tested by correlating the NCQ score to scores of other scales measuring quality of care, continuity, trust, and satisfaction. Discriminative ability was tested by investigating differences in continuity subscores of different subgroups. Test-retest reliability was analysed in 172 patients. RESULTS: Principal factor analysis confirmed the previously found three continuity subscales - personal continuity, care provider knows me; personal continuity, care provider shows commitment; and team/cross-boundary continuity. Construct validity was demonstrated through expected correlations with other variables and discriminative ability through expected differences in continuity subscores of different subgroups. Test-retest reliability was high (the intraclass correlation coefficient varied between 0.71 and 0.82). CONCLUSION: This study provides evidence for the validity, discriminative ability, and reliability of the NCQ. The NCQ can be of value to identify problems in continuity of care.

Continuity in different care modes and its relationship to quality of life: a randomised controlled trial in patients with COPD.

BACKGROUND: New care modes in primary care may affect patients' experienced continuity of care. AIM: To analyse whether experienced continuity for patients with chronic obstructive pulmonary disease (COPD) changes after different care modes are introduced, and to analyse the relationship between continuity of care and patients' quality of life. DESIGN AND SETTING: Randomised controlled trial with 2-year follow-up in general practice in the Netherlands. METHOD: A total of 180 patients with COPD were randomly assigned to three different care modes: self-management, regular monitoring by a practice nurse, and care provided by the GP at the patient's own initiative (usual care). Experienced continuity of care as personal continuity (proportion of visits with patient's own GP) and team continuity (continuity by the primary healthcare team) was measured using a self-administered patient questionnaire. Quality of life was measured using the Chronic Respiratory Questionnaire. RESULTS: Of the final sample (n = 148), those patients receiving usual care experienced the highest personal continuity, although the chance of not contacting any care provider was also highest in this group (29% versus 2% receiving self-management, and 5% receiving regular monitoring). There were no differences in experienced team continuity in the three care modes. No relationship was found between continuity and changes in quality of life. CONCLUSION: Although personal continuity decreases when new care modes are introduced, no evidence that this affects patients' experienced team continuity or patients' quality of life was found. Patients still experienced smooth, ongoing care, and considered care to be connected. Overall, no evidence was found indicating that the introduction of new care modes in primary care for patients with COPD should be discouraged.