Active Involvement Of Patients Research Articles

Strukturirana edukacija obolelih od dijabetesa - pregled organizaciono-metodoloških strategija I faktora uspeha

All diabetic patients must take part in structured education to acquire the knowledge, skills and abilities needed for self-management, self-control, and change in health behaviors, to achieve ideal glucoregulation. This is of particular importance for patients with type 2 diabetes, which is associated with an inadequate lifestyle and accounts for up to 90% of all diabetes. Structured education must consider the organizational and methodological conditions and criteria of the American Diabetes Association. Education can be realized as an individual, group, or combined form of work, with clearly defined goals and outcomes. The public health approach is focused on working in small groups, due to cost-effectiveness and efficiency, which may reach more participants. The education provider may be one or more healthcare professionals, as a team. Duration of education is an important success factor, with each hour of education are resulting in a 0.04% reduction in HbA1c levels. Consequently, education of more than 10 hours has the best results in the greatest number of participants. Interactive work, active patient involvement in education, problem-solving, and group discussions promote effective education and metabolic control. However, in addition to hiring healthcare professionals, successful education requires patient participation in a constant change in life habits, and this depends on many factors: personal attitudes, health beliefs, awareness of illness and health, skills, life priorities, financial resources, family support, workplace and community. Therefore, there is a need to empower patients, motivate them to act, develop and implement the recommended behavior in daily life, for the maintenance of good health and the prevention of long-term complications of diabetes.

The Role of New Technologies in Value Co-Creation Processes: Healthcare Management and the National Health System as a System of Services

Technologies may affect the emergence of value co-creation phenomenon within the national health system. The aim is to explore how the exchange of resources between actors connected through multi-level relationships, whose interactions are mediated by technology, can lead to the joint creation of new value and potential innovation. By analyzing the definition of value co-creation, the paper presents the National Health System as a complex service system and proposes a conceptual framework, then applied to the case study to identify: 1) the enabling factors for value co-creation; 2) the network mechanisms and the information interests of the various actors that lead to the continuous renewal of resources, to value co-creation and to innovation. Results allow the conceptualization of the enabling factors for co-creation management and guide managers to identify tools, resources, and technologies that promote value co-creation by improving understanding of the different types of activities performed by actors during the joint exchange of resources and the mechanisms that promote the active involvement of users and patients.

Association between participation in sports club activities and decision-making preferences in end-of-life treatment among Japanese elderly people:a cross-sectional study.

Introduction: Decision-making regarding treatment at the end-of-life stage is an important issue for the elderly and their families. Such decision-making may be influenced by activities that promote communication and physical health. The purpose of this study was to examine the association between participation in sports club activities and decision-making regarding life-prolonging treatment among the general community-dwelling Japanese elderly. Methods: In this cross-sectional study, which used stratified random sampling, 1,603 elderly people aged 65 years or older as of January 2016, living in Fukushima prefecture, Japan were enrolled. Data was collected by a self-completed questionnaire (effective response rate: 53.4%). The association of sports club activity participation with a preference for accepting or declining life-prolonging treatment was analyzed by multinomial logistic regression analysis. Results: Of those participating in sports club activities, the results revealed an odds ratios of 1.812 for participants declining life-prolonging treatment (95% CI=1.325 to 2.477) and 1.948 for those who preferred life-prolonging treatment (95% CI=1.160 to 3.271). Conclusions: The present study suggests that participation in sports club activities is associated with articulating decisions about life-prolonging treatment in end-of-life care. Consideration of patient involvement in daily activities in non-medical settings may enhance decision-making for end-of-life care planning.

Maintaining Professional Encounters and Enhancing Telemedicine Interactions With Core Virtual-Clinical Values

Maintaining Professional Encounters and Enhancing Telemedicine Interactions With Core Virtual-Clinical Values

A roadmap for optimizing chronic kidney disease patient care and patient-oriented research in the Eastern European nephrology community.

Chronic kidney disease (CKD) is a major health problem because of its high prevalence, associated complications and high treatment costs. Several aspects of CKD differ significantly in the Eastern European nephrology community compared with Western Europe because of different geographic, socio-economic, infrastructure, cultural and educational features. The two most frequent aetiologies of CKD, DM and hypertension, and many other predisposing factors, are more frequent in the Eastern region, resulting in more prevalent CKD Stages 3–5. Interventions may minimize the potential drawbacks of the high prevalence of CKD in Eastern Europe, which include several options at various stages of the disease, such as raising public, medical personnel and healthcare authorities awareness; early detection by screening high-risk populations; preventing progression and CKD-related complications by training health professionals and patients; promoting transplantation or home dialysis as the preferred modality; disseminating and implementing guidelines and guided therapy and encouraging/supporting country-specific observational research as well as international collaborative projects. Specific ways to significantly impact CKD-related problems in every region of Europe through education, science and networking are collaboration with non-nephrology European societies who have a common interest in CKD and its associated complications, representation through an advisory role within nephrology via national nephrology societies, contributing to the training of local nephrologists and stimulating patient-oriented research. The latter is mandatory to identify country-specific kidney disease–related priorities. Active involvement of patients in this research via collaboration with the European Kidney Patient Federation or national patient federations is imperative to ensure that projects reflect specific patient needs.

Active Integration of Patients into Infection Control, as perceived by Health Care Professionals: Results of the AHOI Pilot Study.

ObjectiveMedical professionals have a key role in active patient involvement in infection control and prevention (ICP). ICP of hospital-associated infections is critical for patient safety and requires targeted integration of patients and their relatives. The possibilities of proper involvement are identified, tested and realized in the innovative AHOI project. Its acronym stands for Activation, Help, Open communication and Infection prevention. The project is based on the three dimensions acceptance, empowerment and adherence. The results presented here are from a health-care professional (HCP) focused part of a pilot study to implement AHOI intervention. This section aimed at the HCPs’ evaluation of the intervention material, their perception and acceptance of the adherence and empowerment of patients, as well as the perception of their and colleagues’ own behavior.MethodsThe cross-sectional survey was conducted with a questionnaire at two surgical wards of a third-level hospital for 14 weeks. All HCPs with contact to patients were entitled to voluntarily participate in the study. AHOI instruments such as visual reminder, videos for patients and the AHOI-box were implemented on the wards. Additionally, the ward personnel received a psychological and practical train-the-trainer curriculum.ResultsSixty-nine questionnaires were handed out and 29 returns were analyzed. The results show a strong identification and acceptance of HCPs with their role in the AHOI project. No additional workload was perceived by implementing AHOI. Teaching of medical professionals and information materials are seen as good supports. HCPs are empowering hygienic behavior in patients and colleagues. HCPs observed increasing adherence of patients.ConclusionHCPs positively perceived acceptance, support and identification with the ideas of the AHOI project. Therefore, since HCPs are key for patients and their relatives, AHOI intervention seems to be a feasible instrument and aid in implementing national and international recommendations for hygienic behavior.

Active involvement of patients in pharmacist education has a positive impact on students\u2019 perspective: a pilot study

BackgroundPatient-led education contributes to the implementation of practical experience of working with patients in health care professional curricula. There are few descriptions of patients’ involvement in pharmacists’ training and most often, the patients have been used as passive props to facilitate training. More recently, greater emphasis has been given to a more active form of patient involvement but the application in the curriculum of pharmacy has not been conceptualized. Thus, the aim of our study was to implement a workshop involving patients as partners in undergraduate pharmacy educational programme, and to evaluate its impact of on students’ perspectives.MethodOn a prospective observational study basis, the impact was assessed in terms of relevance, learning outcomes and achievement transfer using the Kirkpatrick training assessment method. In addition, we evaluated social representations of the students before and after the workshop.ResultsNinety-four students attended the sessions. All participants were satisfied and emphasized the relevance of the involvement of patients. Postworkshop scores were significantly improved in both competencies to be acquired. At the end of the workshop, students reported two to three actions to implement in order to meet patients’ expectations, illustrating an intent to transfer learning outcomes in professional context. Interestingly, about patients’ expectations on pharmacist’s role, students’ social representations had evolved significantly after the session.ConclusionThese results highlight the positive impact of the innovative workshops and the additive value of patients’ involvement in the pharmacy undergraduate programme.

Aktive Beteiligung von älteren Patient*innen an klinischer Forschung (INVOLVE-Clin): Ein Studienprotokoll

IntroductionPatient involvement in health research is an integral part of health care in many countries. It promotes the relevance and quality of research and increases the meaningfulness of research results. Meanwhile, the value of patient involvement has also been recognised in Germany. The lack of a common understanding of patient involvement and appropriate methods make implementation difficult. In Germany, patients are still rarely involved in the planning and conduct of health research. Vulnerable patient groups such as the elderly and the very old are considered particularly challenging for researchers in active patient involvement due to their special needs, which is why they are often neglected. Especially nursing home residents suffer from a variety of health impairments which are accompanied by a high number of prescription drugs and adverse events and can therefore make patient involvement more difficult. The present project aims to test the method of patient advisory boards for the involvement of nursing home residents. Using the design of a clinical trial to optimise medication for nursing home residents as a case study, we will assess the feasibility of the method for this target group. We will also install a patient advocate as moderator of the advisory board. The study plan is described in the present study protocol. MethodsTwo patient advisory boards with nursing home residents will be established. With a patient advocate acting as moderator, the essential elements of a clinical trial to optimise medication will be discussed and passed on to the study planning team via the patient advocate. The overall topic of the clinical trial is the optimisation of medication in cardiovascular disease. The nursing home residents are informed about the contents and ideas of the study to be planned and the interests of the researchers, respectively, and will discuss the proposals of the study planning team. Nursing home residents’, the patient advocate's and the researchers’ expectations and experiences will be examined in individual interviews. DiscussionThe study will provide a potentially suitable method to involve nursing home residents in the research process. The jointly developed study design will be incorporated into a new project proposal. The results will be used to inform the development of a German handbook on active public and patient involvement.

Relevant non-pharmacologic topics for clinical research in rheumatic musculoskeletal diseases: The patient perspective.

The research approach on rheumatic musculoskeletal diseases (RMDs) is challenging and patient involvement is an emerging issue to obtain relevant information to research. Despite growing interest in non-pharmacologic aspects of clinical research in RMDs, the patients' perspectives are currently poorly explored. A cross-sectional no-profit online survey was devised to identify and rank the priorities for clinical research in RMDs according to patients' perspectives. Patients were asked to rate the following topics: food/nutrition, air pollution, smoking, work activity, social participation, physical activity, emotional well-being/stress, alternative medicine, and patient-physician relationship. The survey was disseminated by ALOMAR (Lombard Association for Rheumatic Diseases) between June and October 2019. Two hundred RMD patients completed the survey. The topic most rated 188 (94%) was the doctor-patient relationship, considered very or extremely important. Other topics rated as follows: psychological well-being 185 (92.5%), physical activity 155 (77.5%), nutrition, eating habits 150 (75%), alternative therapies 144 (72%), work activity 144 (72%), environmental pollution 134 (67%), social life 121 (60.5%) and cigarette smoke 119 (59.5%). The topics considered relevant were perceived to be able to influence disease symptoms. Environmental pollution and smoking were considered the most important for RMD prevention in 43.3% and 48.7% respectively. This survey highlights the relevance of several unmet needs and indicates that active patient involvement is essential to design successful translational studies and improve clinical outcomes.

The city of Trieste as the center of the attention to the person: an historical and cultural framework of the enabling nursing, a fertile ground for the development of Engagement

The Author of the article summarizes the core aspects and theoretical assumptions of the “Enabling Approach” that has characterized the clinical practice of the ASUGI for years. The model has proved to be effective in positively influencing the quality of life of individuals assisted and in reducing the number of hospitalisations. The model affirms the need to establish relations of a mainly symmetrical nature with the individuals assisted and their caregivers. On the contrary, according to this approach, proposing a “top-down” asymmetric relationship with the patient means responding to an unconscious health professional’s need of power over the patient rather than to the patient’s real needs. This aspect, in the perspective of the Author, lies at the basis of the active involvement (Engagement) of patients in their health care processes.

Promuovere il coinvolgimento dei pazienti per migliorare la sicurezza in chirurgia

Background: Patient safety has become essential with increasing complexity of health systems and the consequent increase in patient damage. Clinical risk management aims to prevent and reduce the risks, errors and damages that occur to patients during health care. The direct involvement of patients in care pathways can be both an important source of information on potential risks and a resource for improving safety.Objective: To improve patient safety in surgery by promoting the active involvement of patients admitted to an orthopedic department.Method: After check-in, a checklist was administered to the patients, consisting of 21 items that took into consideration the good practices to be applied in surgery. The checklists returned by the patients at the end of their stay were analyzed to identify any areas for improvement.Results: From July 2019 to September 2019, the checklists were administered to 76 patients who underwent hip or knee arthroplasty, admitted to an orthopedic ward. 63% of the delivered checklists were returned by the patients. The analysis made it possible to verify that good practices for safety in surgery are effectively applied by health personnel. However, some critical areas were identified on which to intervene with improvement actions.Conclusions: This work demonstrates that patient involvement can help improve the safety of the surgical path, in order to prevent potential adverse events. Further studies are needed with sufficient sample power to validate the findings of this work.

Cognition, function and awareness of disease impact in early Parkinson’s and Huntington’s disease

Purpose Patients with Parkinson’s and Huntington’s Disease (PD and HD) present impairments in cognitively challenging everyday activities. This study contrasts these two basal ganglia disorders on the ability to perform daily life- like tasks and their level of awareness regarding the disease impact on function. Methods 19 controls, 10 early-onset PD, 20 early stage PD, and 15 early manifest HD patients were compared in the “EcoKitchen,” a virtual reality task with increasing executive load, the “Behavioural Assessment of Dysexecutive Syndrome battery – BADS,” and “The Adults and Older Adults Functional Assessment Inventory – IAFAI,” a self-report functional questionnaire. The EcoKitchen clinical correlates were investigated. Results All clinical groups presented slower EcoKitchen performance than controls, however, only HD patients showed decreased accuracy. HD and PD patients exhibited reduced BADS scores compared to the other study participants. Importantly, on the IAFAI, PD patients signalled more physically related incapacities and HD patients indicated more cognitively related incapacities. Accordingly, the EcoKitchen performance was significantly associated with PD motor symptom severity. Conclusions Our findings suggest differential disease impact on cognition and function across PD and HD patients, with preserved awareness regarding disease- related functional sequelae. These observations have important implications for clinical management, research and rehabilitation. Implications for rehabilitation Patients with early stage Parkinson’s and Huntington’s disease have diagnosis-specific impairments in the performance of executively demanding everyday activities and, yet, show preserved awareness about the disease impact on their daily life. An active involvement of patients in the rehabilitation process should be encouraged, as their appraisal of the disease effects can help on practical decisions about meaningful targets for intervention, vocational choices, quality-of-life issues and/or specific everyday skills to boost. The EcoKitchen, a non-immersive virtual reality task, can detect and quantify early deficits in everyday-like tasks and is therefore a valuable tool for assessing the effects of rehabilitation strategies on the functional cognition of these patients. Rehabilitation efforts in the mild stages of Parkinson’s and Huntington’s disease should be aware of greater time needs from the patients in the performance of daily life tasks, target executive skills, and give a more prominent role to patients in symptoms report and management.

Role of active patient involvement in undergraduate medical education: a systematic review

ObjectivesTo identify the scope of active patient involvement in medical education, addressing the current knowledge gaps relating to rationale and motivation for involvement, recruitment and preparation, roles, learning outcomes and...

Patient involvement in surgical wound care research: A scoping review.

Active involvement of patients in planning, conducting, and disseminating research has been adopted by many organisations internationally, but the extent to which this occurs in surgical wound care is not evident. This scoping review aimed to identify how patients have been involved in surgical wound care research and the quality of its reporting. Full-text studies focused on preoperative and postoperative surgical wound care in the acute care setting, published in English between 2004 and 2019, were included in the review. Screening, data charting, and quality assessment were conducted by two reviewers independently, adjudicated by a third, and then reviewed by five others. Thematic analysis synthesised the findings. Of the eight included studies, seven explained the methods for patient involvement and five described aims related to patient involvement and commented on patient involvement in the discussion. None met all of the quality assessment criteria. Three themes emerged: involvement in modifying and refining research processes, connecting and balancing expert and patient views, and sharing personal insights. Recommendations to improve patient involvement in surgical wounds research include the following: using framework and tools to inform future research; training researcher and patients in their respective research roles; and ongoing monitoring of patient involvement.

What are the Key Characteristics of a 'Good' Psychotherapy? Calling for Ethical Patient Involvement.

ObjectiveThe evidence-based practice movement clearly defines the relevant components of a good treatment. In the present article, we elaborate on how the active involvement of patients within psychotherapy can and should be increased in order to respect ethical considerations. Our arguments complement the requirements of evidence-based practice, and are independent of the actual psychotherapeutic treatment approach being used.MethodTheoretical and ethical analysis.ResultsIn order to respect patient autonomy, psychotherapy needs to be transparent and honest when it comes to disclosing the relevant factors for promoting therapeutic change. It has been argued that ethical informed consent needs to include empirically supported patient information. In this paper we go one step further: we outline that fully respecting ethical considerations in psychotherapeutic treatment necessarily calls for acknowledging and strengthening the active role of patients in the course of psychotherapy. Accordingly, patients need not only to be informed openly and transparently about the planned treatment, the treatment rationale, and the expected prognosis of improvement in the course of psychotherapy, but they also need to be actively involved in the decision-making process and during the entire process of psychotherapeutic treatment.ConclusionsOur arguments support the tendency that can be observed in health care in recent years towards more active patient involvement across different health-care domains, but also in clinical research. This article offers an ethical perspective on the question what defines a ‘good psychotherapy', which, hopefully, will help to leave behind some of the ongoing psychotherapy debates and move the field forward.

Abstract A036: Active patient and stakeholder engagement was critical to the success of a comparative trial to reduce liver cancer disparities for underserved Asian Americans with HBV

Abstract Background: Asian Americans are a liver cancer disparity population and a chronic hepatitis B (CHB) disparity population. Seventy-five percent of hepatocellular carcinoma cases are developed from CHB. Moreover, in the past decades, patient and stakeholder engagement has been an emerging infrastructure in the research process. This study aims to examine the influences of patient and stakeholder engagement, an emerging infrastructure in the research process, on reducing liver cancer disparities among underserved Asian Americans with CHB. Method: A 3-year fieldwork was conducted in a broader HBV project to observe the influences of patient and stakeholder engagement. Twenty-five patient partners/caregivers, physicians, and community advocate stakeholders were engaged through numerous regular in-person meetings and teleconferences in project conceptualization, study design, patients recruitment and retention strategies, intervention components development (message and materials review/feedback, education content review/feedback), outcome measurement assessment tools, and quality control. Moreover, the engagement experiences from patients and stakeholders were examined using the Bell-Elkins questionnaire with 25 survey forms. Results: the survey indicated that there is a unanimous agreement of partnership engagement in shared mission, goals and values, and measurable outcomes (e.g., community-campus partnership, collective decisions, effective communication, resource shared, addressed weakness, and mutual trust and respect) addressed for the study. All of the 25 patient and stakeholders agreed that the partnership shared the same goals and values, the members had mutual trust and respect and they shared varied resources. A majority of them (84%-92%) believed that the partnership had effective communication, it was a true community-clinical-academic partnership, the decisions were collectively made, and it addressed its weaknesses. The fieldwork observation showed that the patient and stakeholder engagement can improve the study quality by enhancing intervention content, offering practical suggestions, promoting recruitment and increasing the retention rate. Furthermore, the adoption of the patient-centered strategy in the HBV project has resulted in significant benefits for patients, as patients can better manage their health when they are informed and supported. Full engagement empowered target populations to make lifestyle modifications, enhance patients’ HBV monitoring and treatment, and thus reducing the risk of developing liver cancer. Conclusion: the active involvement of patient and stakeholders can significantly empower the investigators and reduce the HBV patient’s liver cancer disparities among Asian Americans. In the future studies, the patient and stakeholders should be involve actively in the different stages of the project to improve the project quality, reduce cancer disparities, and improve the public health. Citation Format: Wenyue Lu, Yin Tan, Michelle Naidoo, Aliyah Saber, Ming-Chin Yeh, Grace X Ma. Active patient and stakeholder engagement was critical to the success of a comparative trial to reduce liver cancer disparities for underserved Asian Americans with HBV [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr A036.

Provision and use of radiotherapy in Europe.

Radiation therapy is one of the core components of multidisciplinary cancer care. Although ~ 50% of all European cancer patients have an indication for radiotherapy at least once in the course of their disease, more than one out of four cancer patients in Europe do not receive the radiotherapy they need. There are multiple reasons for this underutilisation, with limited availability of the necessary resources – in terms of both trained personnel and equipment – being a major underlying cause of suboptimal access to radiotherapy. Moreover, large variations across European countries are observed, not only in available radiotherapy equipment and personnel per inhabitant or per cancer patient requiring radiotherapy, but also in workload. This variation is in part determined by the country's gross national income. Radiation therapy and technology are advancing quickly; hence, recommendations supporting resource planning and investment should reflect this dynamic environment and account for evolving treatment complexity and fractionation schedules. The forecasted increase in cancer incidence, the rapid introduction of innovative cancer treatments and the more active involvement of patients in the healthcare discussion are all factors that should be taken under consideration. In this continuously changing oncology landscape, reliable data on the actual provision and use of radiotherapy, the optimal evidence‐based demand and the future needs are crucial to inform cancer care planning and address and overcome the current inequalities in access to radiotherapy in Europe.

Civic engagement and mental health system strengthening in Indonesia: a qualitative examination of the views of health professionals and national key stakeholders

BackgroundMental health services in Indonesia are developing rapidly in response to national and global health policy to support people living with psychosis. This presents a unique opportunity for civic engagement, the active involvement of patients, carers and communities in mental health care, to shape emergent services. In-depth explorations of the views of professionals and other key stakeholders in mental health care on the use of civic engagement in Indonesia are lacking which contributes to a limited understanding of its potential in this regard. The study aimed to explore contemporary professionals’ and other key stakeholders’ perspectives on the current use of and potential for civic engagement to strengthen mental health systems in Indonesia.MethodsQualitative interviews were undertaken and analysed using thematic analysis underpinned by a critical realist approach. Eighteen multi-disciplinary professionals and lay health workers involved in mental health care in Jakarta and Bogor and 10 national key stakeholders were recruited.ResultsDespite high levels of awareness of and support for civic engagement amongst mental health professionals and policy makers combined with a nascent grass roots movement, analysis revealed unstructured and insufficient mechanisms for civic engagement which resulted in ad-hoc and mostly superficial levels of involvement activity. Civic engagement was thought to require a marked shift in existing practices as well as organisational and societal cultures. Challenging stigma is a key feature of civic engagement and our analysis highlights the relevance of social contact methods which are locally and culturally contextualised in this regard. Our findings point to a need to expand current definitions of civic engagement which focus on indivdiual enablement to ones that also encompass environmental and organisational enablement to optimise the future use of civic engagement in mental health settings.ConclusionsKey mental health stakeholders have identified that central aspects of Indonesian culture are well aligned to the ethos of civic engagement which has the potential to facilitate the enactment of recent global health policy. However, full realisation is likely to be impeded by prevailing paternalistic cultures in mental health services and high levels of stigma and discrimination towards those with mental illness in Indonesia without intervention.

E-health education interventions on HbA1c in patients with type 1 diabetes on intensive insulin therapy: A systematic review and meta-analysis of randomized controlled trials.

Patient-centered education improves glycemic control in subjects with type 1 diabetes (T1D). E-health technologies are widely used to support medical decision-making, patient advising or teleconsultations; however, the active participation of a patient is missing. Challenges remain whether e-health education can be effectively incorporated into clinical pathways. The purpose of the study was to examine the effects of e-health education, compared to standard care, on HbA1c. MATERIAL AND METHODS: We conducted a literature search (EMBASE, MEDLINE, The Cochrane Library and Web of Science) up to February 2018 for randomized controlled trials (RCTs) of Internet-/ mobile application-based educational interventions, with the active involvement of patients, provided in addition to, or substituting usual care in patients with T1D on intensive insulin therapy. The primary outcome was the standardized difference in means (SDM) of HbA1c change from baseline between intervention and comparator groups. Eight RCTs involving 757 subjects were included on 6335 screened citations. After excluding two trials with a high risk of bias from the meta-analysis, the HbA1c change from baseline did not significantly differ between intervention and comparator groups (SDM = -0.154, 95% CI: -0.335 to 0.025; P = 0.01, random-effect model). The number of studies is limited with a relatively short duration. Reporting of educational outcomes was not rigorous. The effect of e-health educational interventions on HbA1c in patients with T1D is comparable to the standard care. This review highlights the need for further well-designed RCTs that will investigate the opportunities of incorporating e-health education into clinical pathways.

P71 Working collaboratively with patients as research partners in the co-production of the WASTEd: a measure of fatigue and energy in axial spondyloarthritis (axSpA)

Abstract Background The last decade has witnessed significant growth in the active involvement of patients as research partners (PRPs) in health and social care research to facilitate a stronger patient-focus in research endeavours and outputs. Whilst general guidance is available - e.g. INVOLVE - there is limited guidance pertaining to how one should collaborate with patients as partners in the development of patient-reported outcome measures (PROMs). Here, we describe our active collaboration with patients as research partners in the co-production of a new PROM: the Warwick Axial Spondyloarthritis measure of faTigue and Energy (WASTEd). Methods An established PRP group contributed to the development of the initial funding application, whom received training and support from the PRP group facilitator (JM). The key stages for PRP collaboration throughout the PROM development process were jointly agreed and included: developing qualitative research topic guides and supporting data analysis; supporting development and refinement of the measurement framework to underpin the new PROM, and; supporting question (item) generation and refinement following both qualitative and quantitative explorations. All key decisions were made following face-to-face meetings between the lead research and the PRP group. Results Six face-to-face meetings were held over 2.5 years (average meeting duration 2 hours; range 1.5 to 3 hours) with between three and eight PRP members attended each meeting. Additional e-mail correspondence and summary reports were shared between meetings. The group contributed across all project stages including: developing ethics applications which included assessing the acceptability of the study to patients; generating interview topic guides and verbal probes for key issues identified by the PRP group; interpreting qualitative data with the lead researcher; co-designing and editing the draft PROM and refining the long form version of the PROM using both qualitative and statistical data. PRP collaboration was particularly integral to the appropriate use of relevant language and, most substantively, in providing a clearer understanding of the distinction between fatigue and energy. Conclusion The active collaboration with PRPs has supported the co-production of a relevant and acceptable PROM, driven by the needs and perspectives of patients. Additionally, the PRP groups were able to ensure all refinement decisions made to the PROM did not undermine the content validity of the measure. Finally, their involvement has sought to act as a check, support and challenge on inferences drawn by the researchers, enriching the process and study outcomes. Disclosures N.A. Pearson None. G. Strickland None. J. Thompson None. J. Martindale Honoraria; JM has received speaker fees and/or honoraria from Abbvie Ltd, Novartis, Pfizer and UCB. Grants/research support; JM has received a research grant from Pfizer. E. Tutton None. H. Parsons None. J. Packham None. K. Haywood None.