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.

ObjectiveAssessing the effectiveness of the Assessment of Burden of COPD (ABC) tool on disease-specific quality of life in patients with chronic obstructive pulmonary disease (COPD) measured with the St. George's Respiratory Questionnaire (SGRQ), compared with usual care.MethodsA pragmatic cluster randomised controlled trial, in 39 Dutch primary care practices and 17 hospitals, with 357 patients with COPD (postbronchodilator FEV1/FVC ratio <0.7) aged ≥40 years, who could understand and read the Dutch language. Healthcare providers were randomly assigned to the intervention or control group. The intervention group applied the ABC tool, which consists of a short validated questionnaire assessing the experienced burden of COPD, objective COPD parameter (eg, lung function) and a treatment algorithm including a visual display and treatment advice. The control group provided usual care. Researchers were blinded to group allocation during analyses. Primary outcome was the number of patients with a clinically relevant improvement in SGRQ score between baseline and 18-month follow-up. Secondary outcomes were the COPD Assessment Test (CAT) and the Patient Assessment of Chronic Illness Care (PACIC; a measurement of perceived quality of care).ResultsAt 18-month follow-up, 34% of the 146 patients from 27 healthcare providers in the intervention group showed a clinically relevant improvement in the SGRQ, compared with 22% of the 148 patients from 29 healthcare providers in the control group (OR 1.85, 95% CI 1.08 to 3.16). No difference was found on the CAT (−0.26 points (scores ranging from 0 to 40); 95% CI −1.52 to 0.99). The PACIC showed a higher improvement in the intervention group (0.32 points (scores ranging from 1 to 5); 95% CI 0.14 to 0.50).ConclusionsThis study showed that use of the ABC tool may increase quality of life and perceived quality of care.Trial registration numberNTR3788; Results.

In deciding on the treatment plan for patients with chronic obstructive pulmonary disease (COPD), the burden of COPD as experienced by patients should be the core focus. It is therefore important for daily practice to develop a tool that can both assess the burden of COPD and facilitate communication with patients in clinical practice. This paper describes the development of an integrated tool to assess the burden of COPD in daily practice. A definition of the burden of COPD was formulated by a Dutch expert team. Interviews showed that patients and health-care providers agreed on this definition. We found no existing instruments that fully measured burden of disease according to this definition. However, the Clinical COPD Questionnaire meets most requirements, and was therefore used and adapted. The adapted questionnaire is called the Assessment of Burden of COPD (ABC) scale. In addition, the ABC tool was developed, of which the ABC scale is the core part. The ABC tool is a computer program with an algorithm that visualises outcomes and provides treatment advice. The next step in the development of the tool is to test the validity and effectiveness of both the ABC scale and tool in daily practice.

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 selfmanagement 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.

Background In the last decades, the number of cancer survivors has increased significantly due to improved treatment and better detection of recurrence. This increased survival redirects the scope from survival towards optimising functional outcomes and improving health-related quality of life (HRQol). Functional and HRQoL outcomes can be assessed with patient-reported outcome measures (PROMs). However, the use of PROMs in daily oncological care is not common. This qualitative study investigates the barriers and facilitators of PROM use in an oncological setting, from the perspective of the healthcare professionals (HCPs). Methods Individual semi-structured interviews were conducted among Dutch oncological HCPs. Barriers and facilitators of PROM implementation were identified on various levels of the healthcare system (i.e. level of the patient, individual professional, medical team, and healthcare organisation). Interviews were audio recorded and transcribed verbatim. Transcripts were manually analysed by two independent reviewers using a thematic approach. Identified barriers and facilitators were categorised into Grol and Wensing’s framework for changing healthcare practice. Results Nineteen oncological HCPs working in academic and non-academic hospitals were interviewed. Barriers for PROM implementation were lack of good IT support, lack of knowledge on how to use PROMs, lack of time to complete and interpret PROMs, and a high administrative burden. PROM implementation can be facilitated by providing clear guidance regarding PROM interpretation, evidence that PROMs can save time, and stimulating multidisciplinary teamwork. Conclusion From a HCP point of view, adequately functioning IT technology, sufficient knowledge on PROMs, and dedicated time during the consultation are essential for successful implementation of PROMs in oncological care. Additional local context-specific factors need to be thoroughly addressed.

BackgroundChronic Obstructive Pulmonary Disease (COPD) is a growing worldwide problem that imposes a great burden on the daily life of patients. Since there is no cure, the goal of treating COPD is to maintain or improve quality of life. We have developed a new tool, the Assessment of Burden of COPD (ABC) tool, to assess and visualize the integrated health status of patients with COPD, and to provide patients and healthcare providers with a treatment algorithm. This tool may be used during consultations to monitor the burden of COPD and to adjust treatment if necessary. The aim of the current study is to analyse the effectiveness of the ABC tool compared with usual care on health related quality of life among COPD patients over a period of 18 months.Methods/DesignA cluster randomised controlled trial will be conducted in COPD patients in both primary and secondary care throughout the Netherlands. An intervention group, receiving care based on the ABC tool, will be compared with a control group receiving usual care. The primary outcome will be the change in score on a disease-specific-quality-of-life questionnaire, the Saint George Respiratory Questionnaire. Secondary outcomes will be a different questionnaire (the COPD Assessment Test), lung function and number of exacerbations. During the 18 months follow-up, seven measurements will be conducted, including a baseline and final measurement. Patients will receive questionnaires to be completed at home. Additional data, such as number of exacerbations, will be recorded by the patients’ healthcare providers. A total of 360 patients will be recruited by 40 general practitioners and 20 pulmonologists. Additionally, a process evaluation will be performed among patients and healthcare providers.DiscussionThe new ABC tool complies with the 2014 Global Initiative for Chronic Obstructive Lung Disease guidelines, which describe the necessity to classify patients on both their airway obstruction and a comprehensive symptom assessment. It has been developed to classify patients, but also to provide visual insight into the burden of COPD and to provide treatment advice.Trial registrationNetherlands Trial Register, NTR3788.

In the management of chronic conditions, such as chronic obstructive pulmonary disease (COPD), there is a shift from doctor-driven care to patient-centred integrated care with active involvement of and self-management by the patient. A recently developed tool, the assessment of burden of COPD (ABC) tool, can be used in this transition to facilitate self-management support and shared decision-making. We performed a qualitative study, in which we collected and analysed the data using the methods of conventional content analyses. We performed in-depth interviews consisting of mainly open questions. Fifteen healthcare providers and 21 patients were interviewed who had worked with the ABC tool in daily care. In general, participants responded positively to the tool. Healthcare providers felt the visual representation provided was effective and comprehensible for patients and provided them with insight into their disease, a finding that patients confirmed. If patients were allowed to choose between a consultation with or without the ABC tool, the majority would prefer using the tool: it provides them with an overview and insight, which makes it easier to discuss all relevant topics related to COPD. The tool can provide structure in consultations, and is compatible with the concepts of ‘motivational interviewing’ and ‘individualised care-planning’. Suggestions for improvement related to content and layout. So far, the tool has only been available as a stand-alone online program, that is not connected to the electronic medical record systems. It was therefore suggested that the tool be integrated into the systems to enhance its usability and its uptake by healthcare providers.

The newly developed Assessment of Burden of COPD (ABC) scale is a 14-item self-administered questionnaire which measures the physical, psychological, emotional and/or social burden as experienced by patients with chronic obstructive pulmonary disease (COPD). The ABC scale is part of the ABC tool that visualises the outcomes of the questionnaire. The aim of this study was to assess the reliability and construct validity of the ABC scale. This multi-centre survey study was conducted in the practices of 19 general practitioners and 9 pulmonologists throughout the Netherlands. Next to the ABC scale, patients with COPD completed the Saint George Respiratory Questionnaire (SGRQ). Reliability analyses were performed with data from 162 cases. Cronbach's alpha was 0.91 for the total scale. Test-retest reliability, measured at a two week interval (n = 137), had an intra-class correlation coefficient of 0.92. Analyses for convergent validity were performed with data from 133 cases. Discriminant and known-groups validity was analysed with data from 162 cases. The ABC scale total score had a strong correlation with the total score of the SGRQ (r = 0.72, p < 0.001) but a weak correlation with the forced expired volume in 1 second predicted (r = -0.28, p < 0.001). Subgroups with more severe disease, defined by GOLD-stage, frequency of exacerbations, activity level and depression scored statistically significantly (p < 0.05) worse on almost all domains of the ABC scale than the less severe subgroups. The ABC scale seems a valid and reliable tool with good discriminative properties.