Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey

Abstract

IntroductionThe European Reference Network (ERN) ReCONNET is the ERN aimed at improving the management of rare and complex connective tissue and musculoskeletal diseases (rCTDs) across the European Union (EU). In the mission of ERN ReCONNET, clinical practice guidelines (CPGs) play a crucial role, representing a valid tool towards the harmonisation of the management of rCTDs while improving effectiveness and quality of care delivered to patients.MethodsERN ReCONNET developed two surveys to map the adherence to rCTDs CPGs among healthcare providers and to assess the knowledge and awareness of CPGs for their diseases among patients, family members and caregivers.ResultsThe results of the surveys highlighted that healthcare professionals find it useful to apply CPGs in clinical practice (93%), while 62% of them experience difficulties and barriers in the application in their centres. Healthcare professionals also highlighted the need to develop CPGs for all rCTDs and to implement the use of the existing CPGs in clinical practice. On the other hand, patients, families and caregivers are relatively aware of the purpose of CPGs (51%) and 62% of them were aware of the existence of CPGs for their disease. Patient-friendly versions of CPGs and patients’ lifestyle guidelines should be systematically developed contributing to the empowerment of patients in the disease management.ConclusionERN ReCONNET is addressing the main issues identified in the results of the survey, promoting practical actions for the local adaptation of CPGs across Europe, improving their routine clinical use and increasing the awareness on CPGs among rCTDs patients, family members and caregivers.

The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET

“…Another important activity conducted by the network was to assess the real adaptation of CPGs in clinical practice by clinicians as well as the knowledge and awareness of CPGs for their diseases among patients/family members/caregivers. To do that, two surveys were developed, one on the use of CPGs for HCPs that was dedicated to healthcare professionals and another one aimed at addressing CPGs knowledge and awareness in rCTDs among rCTDs patients, caregivers, and family members (16). Even though all the respondents stated that CPGs are crucial tools to improve patient care, interesting findings have emerged from the results of the study.…”

An Opportunity to Harmonise the Approach to Patients' Care Pathways for Rare and Complex Diseases: RarERN Path™

“…It is widely accepted that CPGs are defined as "statements that include recommendations intended to optimise patient care that is informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options" (9); however, one of the main barriers in the application of CPGs in daily care can not only be truly represented by local legislative restrictions, time constraints (10) but also by pragmatic difficulties in the organisation of PCP. Therefore, improving the organisational structure of PCP may surely contribute to a more efficient and sustainable application of the CPGs, especially in the case of different health contexts characterised by different expertise and resources.…”

Resilience factors contributing to healthcare professionals’ adaptive capacity with hospital standardization: a scoping review

“…A systematic review reported that healthcare professionals' adaptive capacity was in uenced when they believed that guidelines and other standardized practices were too generic, promoted 'cookbook medicine', oversimpli ed di cult or controversial treatment decisions, or when the evidence they were based on was con icting [63]. By contrast healthcare professionals complied to standards, protocols and guidelines when believed to be useful tools [50] in clinical decision making and providing uniform care [49,63], were easy to understand, highly relevant to clinical practice and patient population, and based on credible information sources [63].…”

“…For example, limited access to cancer treatment services and facilities [63], diarrheal wards being too crowded, noisy and dirty with unpleasant smells [46], lack of adequate ventilation, isolation rooms, and shower facilities to prevent infection transmission [25], narrow hospital bathrooms being a barrier to prevent falls [72], lack of vital space, doors, privacy and cooling system in examination cubicles made midwives skip examination of mothers and relied on their statements instead [61]. Time Time constraints were in several studies described as a reason for adaptations [30,37,49,50,[58][59].…”