Validity and Reliability of the Assessment of Burden of Chronic Conditions Scale in the Netherlands.

PURPOSE: The Assessment of Burden of Chronic Conditions (ABCC) tool was developed to improve care by facilitating shared decision making and self-management. It assesses and visualizes the experienced burden of 1 or multiple chronic conditions and integrates it in daily care. The aim of this study is to evaluate whether the ABCC scale is valid and reliable in people with chronic obstructive pulmonary disease (COPD), asthma, or type 2 diabetes (T2D). METHODS: The Saint George Respiratory Questionnaire (SGRQ), the Standardized Asthma Quality of Life Questionnaire (AQLQ-S), and the Audit of Diabetes Dependent Quality of Life Questionnaire (ADDQoL19) were compared with the ABCC scale to assess convergent validity. The internal consistency was evaluated using Cronbach's α. Test-retest reliability was evaluated at a 2-week interval. RESULTS: A total of 65 people with COPD, 62 with asthma, and 60 with T2D were included. The ABCC scale correlated, in accordance with hypotheses, with the SGRQ (75% of correlations ≥0.7), AQLQ-S (100%), and ADDQoL19 (75%). The ABCC scale was internally consistent with a Cronbach's α of 0.90, 0.92, and 0.91 for the total score for people with COPD, asthma, and T2D, respectively. The ABCC scale had a good test-retest reliability with an intraclass correlation coefficient of 0.95, 0.93, and 0.95 for people with COPD, asthma, and T2D, respectively. CONCLUSIONS: The ABCC scale is a valid and reliable questionnaire that can be used within the ABCC tool for people with COPD, asthma, or T2D. Future research should indicate whether this applies to people with multimorbidity, and what the effects and experiences are upon clinical use.

Patient outcomes, patient experiences and process indicators associated with the routine use of patient-reported outcome measures (PROMs) in cancer care: a systematic review.

PURPOSE: In current cancer care, there is a growing debate about the value of using patient-reported outcome measures (PROMs) in daily clinical follow-up. A systematic review of the literature was conducted to assess the evidence of the effectiveness of the routine use of PROMs in daily cancer care in terms of patient outcomes, patient experiences and process indicators and to identify the effect of giving feedback about PROM findings to patients and/or health care professionals (HCPs). METHODS: A systematic search was performed. Studies were eligible for inclusion when they (1) used a PROM as an intervention, with or without feedback to patients and/or HCPs, compared with not using a PROM, and (2) used a PROM as an intervention with feedback to patients and/or HCPs, compared with using a PROM without giving feedback to patients and/or HCPs. RESULTS: After screening of 8341 references, 22 original studies met the inclusion criteria. Most studies found a positive effect on survival, symptoms, HRQoL and patient satisfaction. In general, using feedback to patient and/or HCPs about the PROM results led to better symptom control, HRQoL, patient satisfaction and patient-doctor communication. The majority of included studies had insufficient power to detect significant differences in the outcomes assessed. CONCLUSION: This review shows that predominantly positive findings were found in the use of a PROM in daily cancer care. Additionally, more positive effects were seen when feedback is provided to patient and/or health care professionals, and it is thus highly recommended that this is always done.

ABC-tool reinvented: development of a disease-specific 'Assessment of Burden of Chronic Conditions (ABCC)-tool' for multiple chronic conditions.

BACKGROUND: Numerous instruments have been developed to assess patient reported outcomes; most approaches however focus on a single condition. With the increasing prevalence of multimorbidity, this might no longer be appropriate. Moreover, a more comprehensive approach that facilitates shared decision making and stimulates self-management is most likely more valuable for clinical practice than a questionnaire alone. This study aims to transform the Assessment of Burden of Chronic Obstructive Pulmonary Disease (COPD) (ABC)-tool into the Assessment of Burden of Chronic Conditions (ABCC)-tool for COPD, asthma, and diabetes mellitus type 2 (DM2). The tool consists of a scale, a visualisation of the outcomes, and treatment advice. METHODS: Requirements for the tool were formulated. Questionnaires were developed based on a literature study of existing questionnaires, clinical guidelines, interviews with patients and healthcare providers, and input from an expert group. Cut-off points and treatment advice were determined to display the results and to provide practical recommendations. RESULTS: The ABCC-scale consists of a generic questionnaire and disease-specific questionnaires, which can be combined into a single individualized questionnaire for each patient. Results are displayed in one balloon chart, and each domain includes practical recommendations. CONCLUSIONS: The ABCC-tool is expected to facilitate conversations between a patient and a healthcare provider, and to help formulate treatment plans and care plans with personalised goals. By facilitating an integrated approach, this instrument can be applied in a variety of circumstances and disease combinations.

Effectiveness of the Assessment of Burden of Chronic Conditions (ABCC)-tool in patients with asthma, COPD, type 2 diabetes mellitus, and heart failure: A pragmatic clustered quasi-experimental study in the Netherlands.

BACKGROUND: The Assessment of Burden of Chronic Conditions (ABCC)-tool was developed to optimise chronic care. OBJECTIVES: This study aimed to assess the effectiveness of the ABCC-tool in patients with COPD, asthma, type 2 diabetes, and/or heart failure in primary care in the Netherlands. METHODS: The study had a pragmatic, clustered, two-armed, quasi-experimental design. The intervention group (41 general practices; 176 patients) used the ABCC-tool during routine consultations and the control group (14 general practices; 61 patients) received usual care. The primary outcome was a change in perceived quality of care (PACIC; Patient Assessment of Chronic Illness Care) after 18 months. Secondary outcomes included change in the PACIC after 6 and 12 months, and in quality of life (EQ-5D-5L; EuroQol-5D-5L), capability well-being (ICECAP-A; ICEpop CAPability measure for Adults), and patients' activation (PAM; Patient Activation Measure) after 6, 12, and 18 months for the total group and conditions separately. RESULTS: We observed a significant difference in the PACIC after 6, 12, and 18 months (18 months: 0.388 points; 95%CI: 0.089-0.687; p = 0.011) for the total group and after 6 and 12 months for type 2 diabetes. After 18 months, we observed a significant difference in the PAM for the total group but not at 6 and 12 months, and not for type 2 diabetes. All significant effects were in favour of the intervention group. No significant differences were found for the EQ-5D-5L and the ICECAP-A. CONCLUSION: Use of the ABCC-tool has a positive effect on perceived quality of care and patients' activation, which makes the tool ready for use in clinical practice. Healthcare providers (e.g. general practitioners and practice nurses) can use the tool to provide person-centred care.Trial registration number: ClinicalTrials.gov Registry (NCT04127383).

The Assessment of Burden of Chronic Conditions (ABCC)-tool aims to support disease management for one or multiple chronic condition(s), currently COPD, asthma, type 2 diabetes, and heart failure.Statistically significant differences in patients' perceived quality of care and patient activation were found between the group that used the ABCC-tool and the care-as-usual group. No effect was found on generic quality of life or capability well-being.Healthcare providers can use the ABCC-tool in primary care.

Understanding the healthcare providers' perspective for bringing the assessment of burden of chronic conditions tool to practice: a protocol for an implementation study.

INTRODUCTION: The Assessment of Burden of Chronic Conditions (ABCC) tool is developed and validated to support and facilitate a personalised approach to care for people with chronic conditions. The benefit of using the ABCC-tool greatly depends on how it is implemented. To enable a deeper understanding of when, how and by whom the ABCC-tool is used, this study protocol describes the design of an implementation study in which the context, experiences and implementation process of the ABCC-tool by primary care healthcare providers (HCPs) in the Netherlands will be investigated. METHODS AND ANALYSIS: This protocol describes an implementation study alongside an effectiveness trial, in which the ABCC-tool is evaluated in general practices. The implementation strategy of the tool in the trial confines to providing written information and an instruction video explaining the technical use of the ABCC-tool. The outcomes include a description of: (1) the barriers and facilitators of HCPs for implementation of the ABCC-tool, guided by the Consolidated Framework for Implementation Research (CFIR) and (2) the implementation outcomes guided by the Reach-Effect-Adoption-Implementation-Maintenance (RE-AIM) framework Carroll's fidelity framework. All outcomes will be gathered through individual semistructured interviews throughout 12 months of use. Interviews will be audiorecorded and transcribed. Transcripts will be analysed using content analysis for identifying barriers and facilitators (based on CFIR) and thematic analyses of HCPs' experiences (based on the RE-AIM and the fidelity frameworks). ETHICS AND DISSEMINATION: The presented study was approved by the Medical Ethics Committee of Zuyderland Hospital, Heerlen (METCZ20180131). Written informed consent is mandatory prior to participation in the study. The results from the study in this protocol will be disseminated through publication in peer-reviewed scientific journals and conference presentations.

Online Tool for the Assessment of the Burden of COVID-19 in Patients: Development Study.

BACKGROUND: The impact of COVID-19 has been felt worldwide, yet we are still unsure about its full impact. One of the gaps in our current knowledge relates to the long-term mental and physical impact of the infection on affected individuals. The COVID-19 pandemic hit the Netherlands at the end of February 2020, resulting in over 900,000 people testing positive for the virus, over 24,000 hospitalizations, and over 13,000 deaths by the end of January 2021. Although many patients recover from the acute phase of the disease, experience with other virus outbreaks has raised concerns regarding possible late sequelae of the infection. OBJECTIVE: This study aims to develop an online tool to assess the long-term burden of COVID-19 in patients. METHODS: In this paper, we describe the process of development, assessment, programming, implementation, and use of this new tool: the assessment of burden of COVID-19 (ABCoV) tool. This new tool is based on the well-validated assessment of burden of chronic obstructive pulmonary disease tool. RESULTS: As of January 2021, the new ABCoV tool has been used in an online patient platform by more than 2100 self-registered patients and another 400 patients in a hospital setting, resulting in over 2500 patients. These patients have submitted the ABCoV questionnaire 3926 times. Among the self-registered patients who agreed to have their data analyzed (n=1898), the number of females was high (n=1153, 60.7%), many were medically diagnosed with COVID-19 (n=892, 47.0%), and many were relatively young with only 7.4% (n=141) being older than 60 years. Of all patients that actually used the tool (n=1517), almost one-quarter (n=356, 23.5%) used the tool twice, and only a small group (n=76, 5.0%) used the tool 6 times. CONCLUSIONS: This new ABCoV tool has been broadly and repeatedly used, and may provide insight into the perceived burden of disease, provide direction for personalized aftercare for people post COVID-19, and help us to be prepared for possible future recurrences.

Effectiveness and cost-effectiveness of the Assessment of Burden of Chronic Conditions (ABCC) tool in patients with COPD, asthma, diabetes mellitus type 2 and heart failure: protocol for a pragmatic clustered quasi-experimental study.

INTRODUCTION: The number of people that have one or multiple condition(s) with a chronic course is rising, which consequently challenges healthcare systems. Healthcare geared to long-term care should focus on patient-centredness, shared decision making and self-management. The Assessment of Burden of Chronic Conditions (ABCC) tool was developed to integrate these elements in daily healthcare practice. The ABCC tool assesses and visualises burden of disease(s), helps to make shared decisions and stimulates self-management. The present paper documents a protocol for a quasi-experimental study investigating the effectiveness and cost-effectiveness of the ABCC tool for people with chronic obstructive pulmonary disease, asthma, type 2 diabetes mellitus and/or heart failure. METHODS AND ANALYSIS: The study has a pragmatic clustered quasi-experimental design and will be conducted in the Netherlands. The intervention will be allocated at the level of general practice. The intervention group (18 general practices, 180 patients) will use the ABCC tool during regular consultations; the control group (18 general practices, 180 patients) will maintain usual care. Outcomes include change in quality of care (Patient Assessment of Chronic Illness Care), quality of life (EuroQol-5D-5L), capability well-being (ICEpop CAPability measure for Adults), patients' activation (Patient Activation Measure) and costs. Follow-up time will be 18 months. Outcomes will be analysed using linear mixed models. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Medical Ethics Committee Zuyderland-Zuyd Heerlen, the Netherlands (METCZ20180131). Results will be published in peer-reviewed journals and will be presented at national and international conferences. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov Registry (NCT04127383).

Predicting Prognosis of Intracerebral Hemorrhage (ICH): Performance of ICH Score Is Not Improved by Adding Oral Anticoagulant Use.

BACKGROUND: The intracerebral hemorrhage (ICH) score is a commonly used prognostic model for 30-day mortality in ICH, based on five independent predictors (ICH volume, location, Glasgow Coma Scale, age, and intraventricular extension). Use of oral anticoagulants (OAC) is also associated with mortality but was not considered in the ICH score. We investigated (a) whether the predictive performance of ICH score is similar in OAC-ICH and non-OAC-ICH and (b) whether addition of OAC use to the ICH score increases the prognostic performance of the score. METHODS: We retrospectively selected all consecutive adult non-traumatic ICH cases (three hospitals, region South-Limburg, the Netherlands 2004-2009). Mortality at 30 days was recorded. Using univariable and multivariable logistic regression, association between OAC use and 30-day mortality was tested. Then (a) we computed receiver operating characteristic (ROC) curves for ICH score and determined the area under the curve (AUC) in OAC-ICH and non-OAC-ICH. Then (b) we created a New ICH score by adding OAC use to the ICH score. We calculated correlation between 30-day mortality and ICH score, respectively, New ICH score using Spearman correlation test. We computed ROC curves and calculated the AUC. RESULTS: We analyzed 1,232 cases, 282 (22.9%) were OAC related ICH. Overall, 30-day mortality was 39.3%. OAC use was independently associated with 30-day mortality (OR 2.09, 95% CI, 1.48-2.95; p < 0.001), corrected for the five predictors of the ICH score. The ICH score performed slightly better in non-OAC-ICH (AUC 0.840) than in OAC-ICH (AUC 0.816), but this difference was not significant (p = 0.39). The ICH score and the New ICH score were both significantly correlated with 30-day mortality (rho 0.58, p < 0.001 and 0.59, p < 0.001, respectively). The AUC for the ICH score was 0.837, for New ICH score 0.840. This difference was not significant. CONCLUSION: The ICH score is a useful tool for predicting 30-day mortality both in patient who use and patients who do not use OAC. Although OAC use is an independent predictor of 30-day mortality, addition of OAC use to the existing ICH score does not increase the prognostic performance of this score.

Mortality after primary intracerebral hemorrhage in relation to post-stroke seizures.

Seizures after intracerebral hemorrhage are repeatedly seen. Whether the development of seizures after intracerebral hemorrhage affects survival in the long term is unknown. This study aims to determine the relation between seizures (i.e., with and without anti-epileptic therapy) and long-term mortality risk in a large patient population with intracerebral hemorrhage. We retrospectively included patients with a non-traumatic ICH in all three hospitals in the South Limburg region in the Netherlands between January 1st 2004 and December 31st 2009, and we assessed all-cause mortality until March 14th 2016. Patient who did not survive the first seven days after intracerebral hemorrhage were excluded from analyses. We used Cox multivariate analyses to determine independent predictors of mortality. Of 1214 patients, 783 hemorrhagic stroke patients fulfilled the inclusion criteria, amongst whom 37 (4.7%) patients developed early seizures (within 7 days after hemorrhage) and 77 (9.8%) developed late seizures (more than 7 days after hemorrhage). Seizure development was not significantly related to mortality risk after correction for conventional vascular risk factors and hemorrhage severity. However, we found a small but independent relation between the use of anti-epileptic drugs and a lower long-term mortality (HR = 0.32, 95% CI 0.11-0.91). In our large population, seizures and epilepsy did not relate independently to an increased mortality risk after hemorrhage.

The Role of Hyperglycemia, Insulin Resistance, and Blood Pressure in Diabetes-Associated Differences in Cognitive Performance-The Maastricht Study.

OBJECTIVE: To study to what extent differences in cognitive performance between individuals with different glucose metabolism status are potentially attributable to hyperglycemia, insulin resistance, and blood pressure-related variables. RESEARCH DESIGN AND METHODS: We used cross-sectional data from 2,531 participants from the Maastricht Study (mean age ± SD, 60 ± 8 years; 52% men; n = 666 with type 2 diabetes), all of whom completed a neuropsychological test battery. Hyperglycemia was assessed by a composite index of fasting glucose, postload glucose, glycated hemoglobin (HbA1c), and tissue advanced glycation end products; insulin resistance by the HOMA of insulin resistance index; and blood pressure-related variables included 24-h ambulatory pressures, their weighted SDs, and the use of antihypertensive medication. Linear regression analyses were used to estimate mediating effects. RESULTS: After adjustment for age, sex, and education, individuals with type 2 diabetes, compared with those with normal glucose metabolism, performed worse in all cognitive domains (mean differences in composite z scores for memory -0.087, processing speed -0.196, executive function and attention -0.182; P values <0.032), whereas individuals with prediabetes did not. Diabetes-associated differences in processing speed and executive function and attention were largely explained by hyperglycemia (mediating effect 79.6% [bootstrapped 95% CI 36.6; 123.4] and 50.3% [0.6; 101.2], respectively) and, for processing speed, to a lesser extent by blood pressure-related variables (17.7% [5.6; 30.1]), but not by insulin resistance. None of the factors explained the differences in memory function. CONCLUSIONS: Our cross-sectional data suggest that early glycemic and blood pressure control, perhaps even in the prediabetic stage, may be promising therapeutic targets for the prevention of diabetes-associated decrements in cognitive performance.