Complex multinational projects aiming at developing solutions in healthcare, like the SQUEEZE project, need to build fruitful relationships with stakeholders to make the research more efficient, relevant and implementable. Many institutions and networks have developed frameworks for stakeholder engagement. Still, the practicalities are unclear, and many are focused solely on patient and public involvement, not on the involvement of researchers, clinicians, or other stakeholders.
Objectives:
To develop a stakeholder strategy efficient enough to provide clear guidance on where, when, and how to involve stakeholders in the context of the SQUEEZE project. To implement it and test it in the first year after its development.
Methods:
The overall SQUEEZE stakeholder strategy was built systematically and iteratively adapting Barkhordarian et al.'s framework [1] consisting of seven steps: 1) Defining, 2) Long-listing, 3) Mapping, 4) Visualizing, 5) Verifying, 6) Mobilizing, and 6) Evaluating. After the development and endorsement, the evaluation included the evaluation of KPIs: stakeholder satisfaction, engagement, influence, and impact. For their measurement, we developed surveys and interviews.
Results:
The SQUEEZE stakeholder strategy included objectives, values, and actionable points. Several rounds of eliciting dynamics, including patient journeys, favoured an exhaustive long listing that was further reduced. All the identified stakeholders were categorised into significant domains for the project. The work-package (WP) leaders were then surveyed to identify which of the listed stakeholders were relevant for their studies and outputs and why and whether they could identify additional critical stakeholders. The level of preferred engagement was finally decided for each stakeholder on their relevance for implementing SQUEEZE products, the level of influence, and the likelihood of engagement. The stakeholders were then mapped into the research cycle phases to identify the timing for involvement. Finally, actionable strategies were established by tailoring the different groups to the tasks in the SQUEEZE WPs and adding potential outcomes to guide the evaluation, e.g., improved retention rates and recruitment for the involvement of PRPs, etc. The strategies include specific training, recruitment for focus groups, webinars, checklists, etc. After 6 months of issuing the strategy, the WP leaders identified some areas for improvement (Table 1). The survey to stakeholders showed high levels of engagement and satisfaction with the project. The discussions with the strategy team disclosed potential drawbacks of the strategy that had not been well implemented. Table 1. Overview of the stakeholder strategy evaluation by the WP leaders (randomly represented in columns).
Conclusion:
The SQUEEZE stakeholder strategy provides a comprehensive approach for stakeholder involvement in all work packages of this complex international multinational project. Evaluation, an often-missing part of stakeholder involvement strategies, is an inherent part of the strategy. The developed strategy can be a blueprint for other projects.
REFERENCES:
[1] Barkhordarian A, et al. J Transl Med. 2015;13:15.
Acknowledgements:
This project has received funding from the European Union's Horizon Europe research and innovation programme under grant agreement No 101095052 and from the Swiss State Secretariat for Education, Research and Innovation (SERI).
The therapeutic management of Sjögren syndrome (SjS) has not changed substantially over the past decades: treatment decisions remain challenging in clinical practice, without a specific therapeutic target beyond the relief of symptoms as the most important goal. In view of this scenario, the European League Against Rheumatism (EULAR) promoted and supported an international collaborative study (EULAR SS Task Force) aimed to develop the first EULAR evidence-, consensus-based recommendations for the management of patients with SjS with topical and systemic medications. The aim was to develop a rational therapeutic approach to SjS patients useful for healthcare professionals, doctors in specialist training, medical students, pharmaceutical industries and drug regulatory organizations following the 2014 EULAR standardized operating procedures.
Methods:
The Task Force included rheumatologists, specialists in internal medicine, oral care specialists, ophthalmologists, gynaecologists, dermatologists, epidemiologists, statisticians, GPs, nurses and patient representatives from 30 countries of the 5 continents. Evidence was collected from studies including primary SjS patients fulfilling the 2002/2016 criteria; when no evidence was available, evidence from studies including associated SjS or patients fulfilling previous sets of criteria was considered and extrapolated. On the basis of the research questions, a systematic literature search between January 1986 and December 2017 was carried out. Summary-of-findings tables were generated and levels of evidence were determined according to the study design using the standards of the Oxford CEBM. A web-based Delphi procedure was carried out in order to reach consensus. For each statement, the grade of recommendation was based on the maximum level of evidence achieved in the SLR using the 4-point scale CEBM categorization. Consensus for endorsement was defined as an agreement score of at least 8 on a 0-10 scale by more than 80% of participants.
Results:
The Task Force endorsed the presentation of general principles for the management of patients with SjS as 3 overarching, general consensus-based recommendations and 12 specific recommendations that form a logical sequence starting with the management of the central triplet of symptoms (dryness, fatigue and pain) followed by the management of systemic, extraglandular disease (Table 1).
Conclusion:
The 2019 EULAR recommendations are based on the evidence collected in the last 16 years in the area of management of primary 2002 SjS patients and on discussions by a large and broadly international Task Force. The recommendations synthesise the current thinking on approaching SjS treatment in a set of overarching principles and recommendations. We hope that the current recommendations will be broadly applied in clinical practice and/or serve as a template for national societies to develop local recommendations.
Abstract Background Hepatitis C virus reinfections in HIV-positive men-who-have-sex-with-men (MSM) challenge the effectiveness of antiviral treatment. To fight this problem, an adapted sexual risk reduction intervention was implemented within a hepatitis C treatment trial. Following this, the current study had two aims and describes 1) how the program was received by participants; and 2) their responses to the program regarding sexual risk taking. Based on the participants’ input, we hoped to judge the intervention’s potential for scale-up. Methods Seventeen participants who received the sexual risk reduction intervention in addition to hepatitis C treatment were recruited for semi-structured interviews six to 12 months post-intervention. We evaluated the responses via reflexive thematic analysis and applied the concept of sense-making. Results Giving hepatitis C a place and living without it again illustrates how participants received the program and how their experiences were altered by the impact of sense-making. Based on their responses, we allocated participants to three groups: 1. Avoid risks: get rid of hepatitis C for life . For these men, hepatitis C remained a life-threatening disease: they actively modified their risk behavior and felt supported by the intervention in maintaining their behavioral changes. 2. Minimize risks: live as long as possible without hepatitis C. In contrast to group 1, these men saw hepatitis C as a manageable disease. The intervention facilitated reflection on risks and how to develop behavioral changes that suited them individually. 3. Accept risks; live with the risk of hepatitis C. These men perceived behavioral changes as much more difficult than “easy” medical treatment. They expected to either undergo repeated rounds of treatment or stay HCV re-infected. Conclusion These results illustrate the diversity of men’s responses and their decisions regarding sexual risk behavior after participating in a combination of antiviral treatment and a sexual risk reduction intervention. Two major aspects were identified: 1) Teachable moments, particularly at the time of diagnosis/treatment, could offer an opportunity to develop openness for behavioral change; 2) adapting sexual risk reduction interventions to sense-making patterns could help to improve its effectiveness. Support for reducing infection risk and raising awareness of preventative measures are additional benefits. Trial registration Clinical Trial Number: NCT02785666 , 30.05.2016.
Objective To develop evidence-based recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc). Methods A task force comprising 7 rheumatologists, 15 other healthcare professionals and 3 patients was established. Following a systematic literature review performed to inform the recommendations, statements were formulated, discussed during online meetings and graded based on risk of bias assessment, level of evidence (LoE) and strength of recommendation (SoR; scale A–D, A comprising consistent LoE 1 studies, D comprising LoE 4 or inconsistent studies), following the European Alliance of Associations for Rheumatology standard operating procedure. Level of agreement (LoA; scale 0–10, 0 denoting complete disagreement, 10 denoting complete agreement) was determined for each statement through online voting. Results Four overarching principles and 12 recommendations were developed. These concerned common and disease-specific aspects of non-pharmacological management. SoR ranged from A to D. The mean LoA with the overarching principles and recommendations ranged from 8.4 to 9.7. Briefly, non-pharmacological management of SLE and SSc should be tailored, person-centred and participatory. It is not intended to preclude but rather complement pharmacotherapy. Patients should be offered education and support for physical exercise, smoking cessation and avoidance of cold exposure. Photoprotection and psychosocial interventions are important for SLE patients, while mouth and hand exercises are important in SSc. Conclusions The recommendations will guide healthcare professionals and patients towards a holistic and personalised management of SLE and SSc. Research and educational agendas were developed to address needs towards a higher evidence level, enhancement of clinician–patient communication and improved outcomes.
To update the European League Against Rheumatism (EULAR) recommendations for the role of the nurse in the management of chronic inflammatory arthritis (CIA) using the most up to date evidence. The EULAR standardised operating procedures were followed. A task force of rheumatologists, health professionals and patients, representing 17 European countries updated the recommendations, based on a systematic literature review and expert consensus. Higher level of evidence and new insights into nursing care for patients with CIA were added to the recommendation. Level of agreement was obtained by email voting. The search identified 2609 records, of which 51 (41 papers, 10 abstracts), mostly on rheumatoid arthritis, were included. Based on consensus, the task force formulated three overarching principles and eight recommendations. One recommendation remained unchanged, six were reworded, two were merged and one was reformulated as an overarching principle. Two additional overarching principles were formulated. The overarching principles emphasise the nurse's role as part of a healthcare team, describe the importance of providing evidence-based care and endorse shared decision-making in the nursing consultation with the patient. The recommendations cover the contribution of rheumatology nursing in needs-based patient education, satisfaction with care, timely access to care, disease management, efficiency of care, psychosocial support and the promotion of self-management. The level of agreement among task force members was high (mean 9.7, range 9.6-10.0). The updated recommendations encompass three overarching principles and eight evidence-based and expert opinion-based recommendations for the role of the nurse in the management of CIA.
Abstract Background Hepatitis C virus (HCV) is common in men who have sex with men (MSM) with HIV. The Swiss HCVree Trial targeted a micro-elimination by using a treat and counsel strategy. Self-reported condomless anal intercourse with non-steady partners was used as the selection criterion for participation in a counselling intervention designed to prevent HCV re-infection. The purpose of this study was to assess the ability of this criterion to identify men who engaged in other sexual risk behaviours associated with HCV re-infection. Methods Men who disclosed their sexual and drug- use behaviours during the prior 6 months, at study baseline, were included in the current study. Using a descriptive comparative study design, we explored self-reported sexual and drug-use risk behaviours, compared the odds of reporting each behaviour in men who reported and denied condomless anal intercourse with non-steady partners during the prior year and calculated the sensitivity/specificity (95% CI) of the screening question in relation to the other at-risk behaviours. Results Seventy-two (61%) of the 118 men meeting eligibity criteria reported condomless anal intercourse with non-steady partners during the prior year. Many also engaged in other potential HCV transmission risk behaviours, e.g., 52 (44%) had used drugs. In participants disclosing drug use, 44 (37%) reported sexualised drug use and 17 (14%) injected drugs. Unadjusted odds ratios (95% CI ) for two well-known risk behaviours were 2.02 (0.80, 5.62) for fisting and 5.66 (1.49, 37.12) for injecting drug use. The odds ratio for sexualised drug use - a potential mediator for increased sexual risk taking - was 5.90 (2.44, 16.05). Condomless anal intercourse with non-steady partners showed varying sensitivity in relation to the other risk behaviours examined (66.7–88.2%). Conclusions Although condomless anal intercourse with non-steady partners was fairly sensitive in detecting other HCV relevant risk behaviours, using it as the only screening criterion could lead to missing a proportion of HIV-positive men at risk for HCV re-infection due to other behaviours. This work also points to the importance of providing access to behavioral interventions addressing other sexual and drug use practices as part of HCV treatment. Trial registration Clinical Trial Number: NCT02785666 , 30.05.2016.
Fragestellung: Verschiedene Erkrankungen können durch die Beeinträchtigung der kardiopulmonalen Funktion prä- und postpartal eine mechanische Kreislaufunterstützung mittels ECMO erforderlich machen. In der vorliegenden Studie wurde die Verwendung der ECMO bei schwangeren Frauen sowie bei postpartalen Patientinnen untersucht und in Hinblick auf das Überleben analysiert. Methodik: Es wurden alle Patientinnen, die zwischen 1996 und 2011 an unserem Zentrum während ihrer Schwangerschaft oder postpartal eine Kreislaufunterstützung mittels ECMO erhielten, in die Analyse inkludiert und retrospektiv ausgewertet. Ergebnisse: 8 Patientinnen mit einem mittleren Alter von 29 Jahren (Bereich 22–40 Jahre) benötigten eine Unterstützung mittels ECMO, 3 während der Schwangerschaft und 5 nach der Entbindung. Die Gründe für das kardiopulmonale Versagen waren Eklampsie, Pneumonie, Puerperalsepsis, Meningokokkensepsis, Kardiomyopathie (n=2), und H1N1-Virusinfektion. Eine der Patientinnen mit Kardiomyopathie wurde herztransplantiert. Nur 2 Patientinnen überlebten. Schlussfolgerung: Die prä- und postpartale kardiopulmonale Unterstützung mittels ECMO wird nur sehr selten benötigt. In den wenigen Fällen, bei denen in unserem Zentrum eine ECMO zum Einsatz kam, ist die Mortalität mit 75% exorbitant hoch. Die Verwendung der ECMO als Therapie der letzten Wahl bei kardiopulmonalem Versagen ist jedoch in Ermangelung einer Therapiealternative weiterhin gerechtfertigt.
Managing Systemic Sclerosis (SSc) requires disease-specific knowledge not only of patients and their family caregivers but also of health professionals. To improve the self-management of skin and mucosal manifestations in SSc patients, an education program was developed and implemented in a Swiss university hospital. An advanced practice nurse (APN) and four registered nurses offer individual counseling and group sessions since October 2011. A first evaluation identified missing aspects and the need to extend the program (Kocher et al., 2013). In a next step, the role of the APN was developed further.
Objectives
To establish an APN who offers counseling to SSc patients and family caregivers, taking their complex and individual needs into account, supports the nursing team in providing evidence-based care for this patient group, and is part of national and international SSc networks.
Methods
The development of the APN role was based on the model described by Hamric et al. (2009) and on the PEPPA Framework (Bryant-Lukosius et al., 2004). Educational visits in England and in the Netherlands as well as the participation in international conferences provided new insights and contacts to the APN. The education program was extended based on results of the first evaluation, different forms of education were integrated, and a connection to the SSc patient association was established.
Results
From 2011 to 2013 82 counselings of 59 SSc patients were performed, 51% of them by the APN. She advised them on skin sclerosis (21%) and sicca symptoms (38%). In addition, she provided timely and understandable information on SSc pathophysiology and symptoms (41%) and arranged two group sessions on sicca symptoms and appearance-related changes. In extending her services, the APN currently visits all inpatients with SSc, offers telephone and e-consultations, facilitates peer support and is interacting with the SSc patient association. Activities within the extended education program are systematically documented and a longitudinal evaluation regarding self-efficacy and symptoms is ongoing.
Conclusions
The driver of the implementation of the new APN role was the need to improve care for SSc patients and their families. The role was successfully established and will be further developed to provide comprehensive self-management support.
References
Bryant-Lukosius D & DiCenso A (2004). A framework for the introduction and evaluation of advanced practice nursing roles. Journal of Advanced Nursing, 48, 530-540. Hamric AB et al (2009). Advanced practice nursing: An integrated approach, 4th edition, St. Louis: Saunders Elsevier. Kocher A et al (2013). Skin and mucosa care in systemic sclerosis – patients9 and family caregivers9 experiences and expectations of a specific education programme: A qualitative study. Musculoskeletal Care, 11: 168-178.
ABSTRACT The purpose of the present study was to empirically investigate the stability and accuracy of one suggested method for matching test difficulty to examinee ability level. Students' answers to traditional classroom tests were rescored by computer as if the examinations had been flexilevel tests. the scores thus obtained were found to correlate highly with the traditional test scores (0.8994 to 0.9478), thereby indicating that flexilevel test scores 'are sufficiently stable and accurate to allow their use for classroom evaluation purposes. (Author)
