Process evaluation of the implementation of the assessment of burden of chronic conditions tool in Dutch primary care - lessons from a qualitative implementation study.

BACKGROUND: The Assessment of Burden of Chronic Conditions (ABCC-)tool is developed to facilitate a personalized approach to care in the patient-healthcare provider (HCP) conversation based on shared decision-making and individualized care plans. An effectiveness study highlighted its effect on the perceived quality of care and patient activation. Successful implementation of novel interventions necessitates an understanding of the user's actual application, user experiences and an evaluation of implementation outcomes. This study aims to evaluate the implementation of the ABCC-tool by HCPs in Dutch primary care. METHODS: This study is the process evaluation of a larger type 1 effectiveness-implementation hybrid trial. Semi-structured interviews with HCPs, who were interventionists in the hybrid trial, were held at three and twelve months after they started using the ABCC-tool. The Reach-Effectiveness-Adoption-Implementation-Maintenance (RE-AIM) framework was used to evaluate implementation outcomes. The Implementation domain was further strengthened with an evaluation of implementation fidelity using Carroll's framework. Inductive coding and thematic analysis were applied to identify relevant participant experiences and implementation outcomes within the RE-AIM framework. RESULTS: Seventeen HCPs (1 general practitioner, 16 practice nurses) participated in the study, representing 39% of potentially eligible participants. Most HCPs applied the tool after finishing their own routines instead of how it is intended to be used, namely from the beginning of the consultation. HCPs reached 2-6 patients. The ABCC-tool was initially adopted, but twelve HCPs stopped using the tool due to COVID-19 related cancellation of consultations. High fidelity was found for applying the questionnaire and visualization. Low fidelity was present for applying shared decision-making, formulating care goals and monitoring progress. HCPs indicated that maintaning the ABCC-tool depended on accompanying training and implementation support. CONCLUSIONS: HCPs applied the ABCC-tool critically different from intended, potentially diminishing its benefits and ease of use. This evaluation stresses the need for a tailored implementation plan that includes more detailed training and guidance on how and when to use the ABCC-tool.

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.

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.

A cluster-randomized study to evaluate the effectiveness and cost-effectiveness of the Assessment of Burden of Chronic Conditions (ABCC) tool in South Tyrolean primary care for patients with COPD, asthma, type 2 diabetes, and heart failure: the ABCC South Tyrol study.

BACKGROUND: Chronic diseases, such as chronic obstructive pulmonary disease (COPD), asthma, type 2 diabetes, and heart failure, often coexist and contribute to a significant burden on individuals and health systems. The Assessment of Burden of Chronic Conditions (ABCC) tool, already in routine clinical use in the Netherlands, aims to comprehensively assess and visualize disease burden, stimulate self-management, and encourage shared decision-making. This study aims to validate the German and Italian versions of the ABCC tool and evaluate its effectiveness and cost-effectiveness in the South Tyrolean Primary Care setting. METHODS: This is a cluster-randomized study involving approximately 400 patients with COPD, asthma, type 2 diabetes, and heart failure who received care from the South Tyrolean General Practices. Initially, the ABCC tool will be translated into German and Italian and validated. Subsequently, half of the participants will use the validated ABCC tool for patient-reported outcome measurement assessments, while the other half will receive usual care. The primary outcome measure is the change in the patients' perception of the quality of care after 18 months. The secondary outcomes included changes in quality of life, self-management behavior, and healthcare utilization. The missing data will be managed using multiple imputations. Additionally, a cost-effectiveness analysis that considers the direct medical costs reimbursed by the National Health Service will be conducted. DISCUSSION: This study provides insights into the application, validation, and efficacy of the ABCC tool in the South Tyrolean healthcare context. The tool's potential to enhance person-centered care, improve the quality of life, and possibly reduce healthcare costs could greatly contribute to sustainable healthcare. The challenges of implementation, such as software integration and the use of an EU data platform, will provide lessons for future international patient care data management. TRIAL REGISTRATION: ISRCTN registry, ISRCTN13531607. Registered on August 23, 2023.

Recommendations for Improving Chronic Care in Times of a Pandemic Based on Patient Experiences.

OBJECTIVES: The COVID-19 pandemic had a profound and pervasive impact on the health of chronic care patients and disrupted care systems worldwide. Our research aimed to assess the impact of the pandemic on chronic care provision and provide recommendations for improving care provision, based on patient experiences. DESIGN: Qualitative semi-structured interviews were held among patients with chronic obstructive pulmonary disease (COPD) or heart failure. SETTING AND PARTICIPANTS: Using stratified sampling, 23 patients with COPD, heart failure, or both were recruited to participate in semi-structured interviews. In the summer of 2021, online interviews were conducted. METHODS: An iterative process was adopted to analyze the data. Going back and forth through the data and our analytical structure, we first coded the data, and subsequently developed categories, themes, and aggregate dimensions. The data were synthesized in a data structure and a data table, which were analyzed using an interpretative approach. RESULTS: We found 3 dimensions through which care might be improved: (1) proactive and adaptive health care organization and use of innovative technologies, (2) assistance in maintaining patient resilience and coping strategies, and (3) health care built on outreaching and person-centered care enabling identification of individual patient needs. Experiences of impaired accessibility to care, altered and unmet care demands and patient needs, and the negative impact of national containment strategies on patient resilience support the need for improvement in these dimensions. CONCLUSIONS AND IMPLICATIONS: The in-depth insight gained on the impact of the pandemic on chronic care provision was used to propose recommendations for improving care, supported by not only the what and how but also the why developments require additional efforts made by policymakers and change agents, augmented by structural use and development of innovations. Health care organizations should be enabled to rapidly respond to changing internal and external environments, develop and implement innovations, and match care to patient needs.

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.

Supporting follow-up care in colorectal cancer patients: first experiences with the Assessment of Burden of ColoRectal Cancer (ABCRC)-tool.

PURPOSE: The Assessment of Burden of ColoRectal Cancer (ABCRC)-tool is a unique tool that includes a PROM focused on health-related quality of life (HRQoL), functional outcomes and lifestyle assessment. Furthermore, it provides visualization of results and treatment advice. The tool aims to support follow-up consultations of colorectal cancer (CRC) patients. The purpose of this study was to evaluate the first experiences of patients and healthcare professionals (HCPs) with the ABCRC-tool. METHODS: The ABCRC-tool was implemented in two Dutch hospitals and used by 25 patients and 5 HCPs during follow-up care. Consultations were audio-recorded and their content was analyzed independently by two researchers. Semi-structured interviews with patients and HCPs were conducted after the consultation. Interviews focused on the overall experience with the tool, ease of use, interpretation of the PROM and the visualized results and on the added value of the tool. RESULTS: Audio recording revealed that multiple topics, relevant to patients, were discussed during consultations with the ABCRC-tool. Patients and HCPs appreciated the ABCRC-tool as it added structure to the consultation, was helpful in the preparation of consultations and provided useful and convenient treatment options. The tool was easy to use, and the visualization was clear and informative. HCPs suggested that the tool is likely to be most relevant for patients in the first year of follow-up. CONCLUSIONS: This study implies that the ABCRC-tool is of added value for patients and their HCPs. Future research should focus on the evaluation of broad implementation, across a wide range of CRC patients. IMPLICATIONS FOR CANCER SURVIVORS: The ABCRC-tool is a valid tool to support CRC survivors and HCPs to monitor and visualize experienced burden of disease and lifestyle parameters in order to optimize personalized care.

The Assessment of Burden of ColoRectal Cancer (ABCRC)-tool; a validity and reliability study.

INTRODUCTION: Follow-up care after treatment for colorectal cancer (CRC) is increasingly focused on health-related quality of life (HRQoL) and functional outcomes. The Assessment of Burden of ColoRectal Cancer (ABCRC)-tool is developed to measure these outcomes and support patient-oriented care. The tool comprises items assessing burden of disease and lifestyle parameters. It consists of a generic module combined with one of the three CRC specific modules. The objective of this study is to assess the construct validity and reliability of the items of the ABCRC-tool. METHODS: Patients who were receiving follow-up care after surgical CRC treatment were invited to complete the ABCRC-tool together with other validated patient-reported outcome measures (PROMs). Construct validity was assessed by testing expected correlations between items of the ABCRC-tool and domains of other PROMs and by examining predefined hypotheses regarding differences in subgroups of patients. Patients completed the ABCRC-tool twice, with 8 days apart, to evaluate its reliability. RESULTS: In total, 177 patients participated (64% male) with a mean age of 67 years (range 33-88). The colon, rectum and stoma module were completed by subsequently 89, 53 and 35 patients. Most items correlated as expected with anticipated domains of the EORTC QLQ-C30 or EORTC QLQ-CR29 (all p-values <0.05). Furthermore, the ABCRC-tool could discriminate between subgroups of patients. The intraclass correlation coefficient (ICC) was good (>0.70) for most items, indicating good reliability. CONCLUSION: The ABCRC-tool is a valid and reliable instrument that is ready for use in a clinical setting to support personalized follow-up care after CRC treatment.

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.

The Psychosocial Impact of the COVID-19 Pandemic on Chronic Care Patients.

OBJECTIVES: The COVID-19 pandemic has had a profound and pervasive impact on psychosocial health and disrupted care systems world-wide. Our research aims to assess the psychosocial impact of the pandemic and related changes in chronic care provision on patients with chronic obstructive pulmonary disease (COPD) and heart failure. DESIGN: A qualitative survey using semi-structured interviews was held among patients with COPD and heart failure. SETTING AND PARTICIPANTS: Using randomized sampling, 23 patients with COPD, heart failure, or both were recruited to participate in semi-structured interviews. Interviews were held by phone or videocall. The survey was held during the summer of 2021, when strict national containment strategies were widely implemented but gradually loosened and vaccination was ongoing. METHODS: Inductive coding using Gioia's approach was used to analyze the data in Atlas.Ti 9.1 software. Using an iterative approach, the data were synthesized in a data structure and data table, which was analyzed using an interpretative approach. RESULTS: We found 3 aggregate dimensions in which the COVID-19 pandemic has a negative impact on psychosocial health of patients with chronic disease: (1) perceived vulnerability to disease, (2) influence of health policy, and (3) a mismatch of supply and demand of health care. In these dimensions, the impact of the COVID-19 crisis was found to have a negative impact on psychosocial well-being, compounded by national strategies to contain the pandemic and a disruption of chronic care for patients. CONCLUSIONS AND IMPLICATIONS: Health care providers should be aware of a multidimensional nature of psychosocial distress for chronic disease patients due to the COVID-19 crisis. Future practice and health policy could be improved by increasing awareness among health care providers, promote regular attention for psychosocial well-being of patients, provision of clear information related to the pandemic, and strategies to secure continuity of care. Results of this study might be further explored in larger studies.

Development and content validation of the Assessment of Burden of ColoRectal Cancer (ABCRC)-tool.

BACKGROUND: It is essential to include patient-reported outcomes (PROs), such as health-related quality of life and symptom burden, in follow-up care of colorectal cancer (CRC) survivors. These outcomes are most valuable when they are discussed with patients and used to guide follow-up care. The purpose of this study was to develop and validate the Assessment of Burden of Colorectal cancer (ABCRC)-tool: a tool that includes a patient-reported questionnaire covering the experienced burden of colorectal cancer, assessment of lifestyle parameters, visualisation of the results, and treatment advice. METHODS: A 5-step method was used to develop the ABCRC-tool: (1) definition of the experienced burden of CRC, (2) determination of the components of experienced burden, (3) formulation of the instrument preconditions, (4) literature study on existing instruments, (5) development of an integrated instrument. Content validity was evaluated by think-aloud interviews with 11 patients and 22 healthcare professionals (HCPs). RESULTS: The ABCRC-tool consists of a generic module and three CRC specific modules with items related to experienced disease burden, and lifestyle. The CRC specific modules are available for both colon and rectal cancer patients with anastomosis, and patients with a stoma. An algorithm with cut-off points was developed to visualise outcomes and offer treatment advice based on (inter)national guidelines. The evaluation of content led to a few minor amendments. CONCLUSION: The ABCRC-tool is a product of close cooperation between patients and HCPs and has good face and content validity. It is aimed to incorporate PROs in treatment decisions in oncological care.

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).