How do we perceive activity pacing in rheumatology care? An international delphi survey

Background Activity pacing is a recommended non-pharmacological intervention for the management of rheumatic and musculoskeletal diseases in international clinical guidelines. In clinical practice, activity pacing aims at adapting daily activities, and is often an important component of self-management programs. However, despite its wide endorsement in clinical practice, to date activity pacing is still a poorly understood concept. Objectives To achieve consensus by means of an international Delphi exercise on the most important aspects of activity pacing as an intervention within non-pharmacological rheumatology care. Methods An international, multidisciplinary expert panel comprising 60 clinicians and/or healthcare providers experienced with activity pacing across 12 different countries participated in a Delphi survey. Over four Delphi rounds, the panelists identified and ranked the most important goals of activity pacing, behaviours of activity pacing (the actions people take to meet the goal of activity pacing), strategies to change behaviour in activity pacing (for example goal setting) and contextual factors that should be acknowledged when instructing activity pacing. Besides, topics for future research on activity pacing were formulated and prioritized. Results Of the 60 panelists, nearly two third (63%) completed all four Delphi rounds. The panel prioritized 9 goals, 11 behaviours, 9 strategies to change behaviour and 10 contextual factors of activity pacing. These items were integrated into a consensual list containing the most important aspects of activity pacing interventions in non-pharmacological rheumatology care. Furthermore, the Delphi panel prioritized 9 topics for future research on activity pacing which were included in a research agenda. This agenda highlights that future research should focus on the effectiveness of activity pacing interventions and on appropriate outcome measures to assess its effectiveness, as selected by 64% and 82% of the panelists, respectively. Conclusions The diversity and number of items included in the consensual list developed in the current study reflect the heterogeneity of the concept of activity pacing. This study is an important first step to achieve better transparency and homogeneity within the concept of activity pacing for clinical practice and research

Patient involvement in basic rheumatology research at Nijmegen: a three year's responsive evaluation of added value, pitfalls and conditions for success

Contains fulltext : 283266.pdf (Publisher’s version ) (Open Access

Characterizing the concept of activity pacing as a non-pharmacological intervention in rheumatology care : results of an international Delphi survey

Objective: To develop a consensual list of the most important aspects of activity pacing (AP) as an intervention within the context of non-pharmacological rheumatology care. Method: An international, multidisciplinary expert panel comprising 60 clinicians and/or healthcare providers experienced in AP across 12 different countries participated in a Delphi survey. Over four Delphi rounds, the panel identified and ranked the most important goals of AP, behaviours of AP (the actions people take to meet the goal of AP), strategies to change behaviour in AP, and contextual factors that should be acknowledged when instructing AP. Additionally, topics for future research on AP were formulated and prioritized. Results: The Delphi panel prioritized 9 goals, 11 behaviours, 9 strategies to change behaviour, and 10 contextual factors of AP. These items were integrated into a consensual list containing the most important aspects of AP interventions in non-pharmacological rheumatology care. Nine topics for future research on AP with the highest ranking were included in a research agenda highlighting that future research should focus on the effectiveness of AP interventions and on appropriate outcome measures to assess its effectiveness, as selected by 64% and 82% of the panellists, respectively. Conclusions: The diversity and number of items included in the consensual list developed in the current study reflect the heterogeneity of the concept of AP. This study is an important first step in achieving more transparency and homogeneity in the concept of AP in both rheumatology daily clinical practice and research

Additional file 2 of Patient involvement in basic rheumatology research at Nijmegen: a three year’s responsive evaluation of added value, pitfalls and conditions for success

Additional file 2. Overview of documents included in the thematic analysis

Additional file 1 of Patient involvement in basic rheumatology research at Nijmegen: a three year’s responsive evaluation of added value, pitfalls and conditions for success

Additional file 1. Plain language summary

Additional file 3 of Patient involvement in basic rheumatology research at Nijmegen: a three year’s responsive evaluation of added value, pitfalls and conditions for success

Additional file 3. GRIPP2 checklist long form

Additional file 4 of Patient involvement in basic rheumatology research at Nijmegen: a three year’s responsive evaluation of added value, pitfalls and conditions for success

Additional file 4. Road map for patient involvement in basic research (step-by-step plan)

External validation of the PAGE-B score for HCC risk prediction in people living with HIV/HBV coinfection

Background & Aims: HBV coinfection is common among people living with HIV (PLWH) and is the most important cause of hepatocellular carcinoma (HCC). While risk prediction tools for HCC have been validated in patients with HBV monoinfection, they have not been evaluated in PLWH. Thus, we performed an external validation of PAGE-B in people with HIV/HBV coinfection. Methods: We included data on PLWH from four European cohorts who were positive for HBsAg and did not have HCC before starting tenofovir. We estimated the predictive performance of PAGE-B for HCC occurrence over 15 years in patients receiving tenofovir-containing antiretroviral therapy. Model discrimination was assessed after multiple imputation using Cox regression with the prognostic index as a covariate, and by calculating Harrell's c-index. Calibration was assessed by comparing our cumulative incidence with the PAGE-B derivation study using Kaplan-Meier curves. Results: In total, 2,963 individuals with HIV/HBV coinfection on tenofovir-containing antiretroviral therapy were included. PAGE-B was <10 in 26.5%, 10–17 in 57.7%, and ≥18 in 15.7% of patients. Within a median follow-up of 9.6 years, HCC occurred in 68 individuals (2.58/1,000 patient-years, 95% CI 2.03–3.27). The regression slope of the prognostic index for developing HCC within 15 years was 0.93 (95% CI 0.61–1.25), and the pooled c-index was 0.77 (range 0.73–0.80), both indicating good model discrimination. The cumulative incidence of HCC was lower in our study compared to the derivation study. A PAGE-B cut-off of <10 had a negative predictive value of 99.4% for the development of HCC within 5 years. Restricting efforts to individuals with a PAGE-B of ≥10 would spare unnecessary HCC screening in 27% of individuals. Conclusions: For individuals with HIV/HBV coinfection, PAGE-B is a valid tool to determine the need for HCC screening. Impact and implications: Chronic HBV infection is the most important cause of hepatocellular carcinoma (HCC) among people living with HIV. Valid risk prediction may enable better targeting of HCC screening efforts to high-risk individuals. We aimed to validate PAGE-B, a risk prediction tool that is based on age, sex, and platelets, in 2,963 individuals with HIV/HBV coinfection who received tenofovir-containing antiretroviral therapy. In the present study, PAGE-B showed good discrimination, adequate calibration, and a cut-off of <10 had a negative predictive value of 99.4% for the development of HCC within 5 years. These results indicate that PAGE-B is a simple and valid risk prediction tool to determine the need for HCC screening among people living with HIV and HBV