Person-centred medicine in the care home setting: development of a complex intervention.

BACKGROUND: Person-centred medicine is recommended in the care of older patients. Yet, involvement of care home residents and relatives in medication processes remains limited in routine care. Therefore, we aimed to develop a complex intervention focusing on resident and relative involvement and interprofessional communication to support person-centred medicine in the care home setting. METHODS: The development took place from October 2021 to March 2022 in the Municipality of Aarhus, Denmark. The study followed the Medical Research Council guidance on complex intervention development using a combination of theoretical, evidence-based, and partnership approaches. The patient involvement tool, the PREparation of Patients for Active Involvement in medication Review (PREPAIR), was included in a preliminary intervention model. Study activities included developing programme theory, engaging stakeholders, and exploring key uncertainties through interviews, co-producing workshops, and testing with end-users to develop the intervention and an implementation strategy. The Consolidated Framework for Implementation Research and the Interprofessional Shared Decision Making Model were used. Data were analysed using a rapid analysis approach. RESULTS: Before the workshops, six residents and four relatives were interviewed. Based on their feedback, PREPAIR was modified to the PREPAIR care home to fit the care home population. In total, ten persons participated in the co-producing workshops, including health care professionals and municipal managerial and quality improvement staff. The developed intervention prototype was tested for three residents and subsequently refined to the final intervention, including two fixed components (PREPAIR care home and an interprofessional medication communication template) delivered in a flexible three-stage workflow. Additionally, a multi-component implementation strategy was formed. In line with the developed programme theory, the intervention supported health care professionals´ awareness about resident and relative involvement. It provided a structure for involvement, empowered the residents to speak, and brought new insights through dialogue, thereby supporting involvement in medication-related decisions. The final intervention was perceived to be relevant, acceptable, and feasible in the care home setting. CONCLUSION: Our results indicate that the final intervention may be a viable approach to facilitate person-centred medicine through resident and relative involvement. This will be further explored in a planned feasibility study.

Medical trainees' speciality considerations at their transition from under- to postgraduate education: a descriptive, cross-sectional study.

PURPOSE: This paper aims to provide knowledge on medical trainees' considerations about specialisation as they move from undergraduate to postgraduate medical education; especially their interest in general practice compared to other specialities. METHOD: We developed and content-validated a questionnaire to examine medical trainees' speciality considerations and conducted a descriptive, cross-sectional study. All medical trainees initiating their internship in Denmark in 2022 (N = 1,188) were invited to participate in the study. Medical specialities were categorised as hospital service specialities, internal medicine specialities, primary care, psychiatry specialities and surgery and emergency specialities. Descriptive statistics were used to describe the cohort and examine the participants' speciality considerations by assigning them to one of the following three orientations: committed, undecided or non-committed to a speciality. RESULTS: The response rate was 38.8% (n = 461), and participants' mean age was 27.4 years with a majority of females (68.1%). Nearly 25% of the participants had general practice as speciality preference, and only 13.9% had excluded general practice for future specialisation. Overall, around half of the participants had general practice as a first, second or third preference for specialisation. CONCLUSION: Danish medical trainees show considerable interest in general practice at the time of their transition from undergraduate to postgraduate education. However, to meet future demands on the primary care, further recruitment of general practitioners is still needed. This knowledge of the specialities' recruitment potential will likely be of interest to medical educators and healthcare planners alike.

Would you like to be a general practitioner? Baseline findings of a longitudinal survey among Danish medical trainees.

BACKGROUND: Recruiting and securing primary care physician workforce has been the center of international attention for decades. In Denmark, the number of general practitioners has decreased by 8.5% since 2013. However, a rising population age and increasing prevalence of chronic diseases and multimorbidity place an even greater future need for general practitioners in Denmark. The choice of general practice as specialty has been associated with a range of both intrinsic and extrinsic factors, however, few studies have examined the recruitment potential that lies within medical trainees' who are undecided about general practice specialization. The aim of this study was, therefore, to explore how medical trainees who are undecided about general practice specialization (GP-positive/undecided) differ from medical trainees who are either committed (GP-committed) or not committed to a general practice career (GP-non-committed) regarding factors related to future work life. METHODS: The present study concerns baseline findings from a longitudinal survey study. An online questionnaire was e-mailed to a national cohort of medical trainees during their transition from under- to postgraduate education. The associations between orientations towards general practice specialization and work-related factors and potential influencing factors, respectively, were analyzed using uni- and multivariable modified Poisson regression models. RESULTS: Of 1,188 invited participants, 461 filled out key study variables concerning specialty preferences and rejections, corresponding to a response rate of 38.8%. We found significant positive associations between GP-positive/undecided orientation and valuing a good work/life balance and the opportunity to organize own working hours when compared to GP-non-committed respondents. Compared to the GP-committed orientations, the GP-positive/undecided orientation was associated with a positive attitude towards technology, working shift hours, and an openness towards several career paths. Across all orientations, undergraduate exposure to the specialties was found to be highly influential on the specialty preferences. CONCLUSION: GP-positive/undecided medical trainees value autonomy over their working hours more than the GP-non-committed, but less than the GP-committed. However, the GP-positive/undecided respondents present more openness to different career opportunities and the use of technology in daily work. We suggest using this knowledge in the planning of recruitment strategies aiming to increase interest in general practice specialization.

Effectiveness of an adaptive, multifaceted intervention to enhance care for patients with complex multimorbidity in general practice: protocol for a pragmatic cluster randomised controlled trial (the MM600 trial).

INTRODUCTION: Patients with complex multimorbidity face a high treatment burden and frequently have low quality of life. General practice is the key organisational setting in terms of offering people with complex multimorbidity integrated, longitudinal, patient-centred care. This protocol describes a pragmatic cluster randomised controlled trial to evaluate the effectiveness of an adaptive, multifaceted intervention in general practice for patients with complex multimorbidity. METHODS AND ANALYSIS: In this study, 250 recruited general practices will be randomly assigned 1:1 to either the intervention or control group. The eligible population are adult patients with two or more chronic conditions, at least one contact with secondary care within the last year, taking at least five repeat prescription drugs, living independently, who experience significant problems with their life and health due to their multimorbidity. During 2023 and 2024, intervention practices are financially incentivised to provide an extended consultation based on a patient-centred framework to eligible patients. Control practices continue care as usual. The primary outcome is need-based quality of life. Outcomes will be evaluated using linear and logistic regression models, with clustering considered. The analysis will be performed as intention to treat. In addition, a process evaluation will be carried out and reported elsewhere. ETHICS AND DISSEMINATION: The trial will be conducted in compliance with the protocol, the Helsinki Declaration in its most recent form and good clinical practice recommendations, as well as the regulation for informed consent. The study was submitted to the Danish Capital Region Ethical Committee (ref: H-22041229). As defined by Section 2 of the Danish Act on Research Ethics in Research Projects, this project does not constitute a health research project but is considered a quality improvement project that does not require formal ethical approval. All results from the study (whether positive, negative or inconclusive) will be published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT05676541.

Definition and delimitation of multimorbidity.

Multimorbidity is often defined as two or more long-term conditions, the definition may, however, vary. This review summarises various definitions of multimorbidity. The prevalence of multimorbidity in Denmark is between 7% and 29% depending on data sources and definition and is increasing with age; nonetheless most patients with multimorbidity are of working age. Several multimorbidity indices have been developed for research purposes, but with no clinical consensus. The concept of complex multimorbidity adds psychosocial context and health-care patterns to better describe the group of patients with multimorbidity having the highest needs.

Effects of DPP-4 inhibitors, GLP-1 receptor agonists, SGLT-2 inhibitors and sulphonylureas on mortality, cardiovascular and renal outcomes in type 2 diabetes: A network meta-analyses-driven approach.

AIMS: The aim of our meta-analyses was to compare the effects of glucose-lowering drugs on mortality, cardiovascular and renal endpoints for a range of type 2 diabetes (T2D) subgroups defined by their specific cardiovascular risk profile. METHODS: Meta-analyses comparing drugs within the classes of GLP-1RAs and SGLT-2 inhibitors were performed and compared to sulphonylureas and DPP-4 inhibitors with available cardiovascular outcome trials. The comparison between the different classes of glucose-lowering drugs included analyses of T2D populations with low risk and high risk for cardiovascular disease including populations with established cardiovascular disease and/or kidney disease. Outcomes included mortality, major cardiovascular adverse events (MACE), hospitalisation for heart failure (HHF) and a composite renal endpoint as applied in the underlying clinical trials. RESULTS: SGLT-2 inhibitors and GLP-1RAs showed beneficial effects on mortality and MACE compared to the classes of DPP-4 inhibitors and sulphonylureas. SGLT-2 inhibitors were shown to be the most effective treatment in terms of HHF and kidney disease. Metformin was used as background therapy for the vast majority of participants in all included studies. Overall, the absolute effects of SGLT-2 inhibitors and GLP-1RAs on these important outcomes were evident for patients with established or at high risk for cardiovascular disease but limited for the low-risk subgroup. CONCLUSIONS: The findings from our analyses substantiate the relevance of treatment with SGLT-2 inhibitors or GLP-1RAs as an add-on to metformin in patients with T2D and a high risk for cardiovascular disease, and furthermore, support the recommendation for SGLT-2 inhibitor treatment in patients with T2D and heart failure or established kidney disease.

Safe Medication in Nursing Home Residents Through the Development and Evaluation of an Intervention (SAME): Protocol for a Fully Integrated Mixed Methods Study With a Cocreative Approach.

BACKGROUND: Medication safety is increasingly challenging patient safety in growing aging populations. Developing positive patient safety cultures is acknowledged as a primary goal to improve patient safety, but evidence on the interventions to do so is inconclusive. Nursing home residents are often cognitively and physically impaired and are therefore highly reliant on frontline health care providers. Thus, interventions to improve medication safety of nursing home residents through patient safety culture among providers are needed. Using cocreative partnerships, integrating knowledge of residents and their relatives, and ensuring managerial support could be beneficial. OBJECTIVE: The primary aim of the Safe Medication of Nursing Home Residents Through Development and Evaluation of an Intervention (SAME) study is to improve medication safety for nursing home residents through developing an intervention by gaining experiential knowledge of patient safety culture in cocreative partnerships, integrating knowledge of residents and their relatives, and ensuring managerial support. METHODS: The fully integrated mixed method study will be conducted using an integrated knowledge translation approach. Patient safety culture within nursing homes will first be explored through qualitative focus groups (stage 1) including nursing home residents, their relatives, and frontline health care providers. This will inform the development of an intervention in a multidisciplinary panel (stage 2) including cocreators representing the medication management process across the health care system. Evaluation of the intervention will be done in a randomized controlled trial set at nursing homes (stage 3). The primary outcome will be changes in the mean scale score of an adapted version of the Danish "Safety Attitudes Questionnaire" (SAQ-DK) for use in nursing homes. Patient safety-related outcomes will be collected through Danish health registers to assess safety issues and effects, including medication, contacts to health care, diagnoses, and mortality. Finally, a mixed methods analysis on patient safety culture in nursing homes will be done (stage 4), integrating qualitative data (stage 1) and quantitative data (stage 3) to comprehensively understand patient safety culture as a key to medication safety. RESULTS: The SAME study is ongoing. Focus groups were carried out from April 2021 to September 2021 and the workshop in September 2021. Baseline SAQ-DK data were collected in January 2022 with expected follow-up in January 2023. Final data analysis is expected in spring 2024. CONCLUSIONS: The SAME study will help not only to generate evidence on interventions to improve medication safety of nursing home residents through patient safety culture but also to give insight into possible impacts of using cocreativity to guide the development. Thus, findings will address multiple gaps in evidence to guide future patient safety improvement efforts within primary care settings of political and scientific scope. TRIAL REGISTRATION: ClinicalTrials.gov NCT04990986; https://clinicaltrials.gov/ct2/show/NCT04990986. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/43538.

An update on the long-term outcomes of prenatal dexamethasone treatment in congenital adrenal hyperplasia.

First-trimester prenatal treatment with glucocorticoid (GC) dexamethasone (DEX) in pregnancies at risk for classic congenital adrenal hyperplasia (CAH) is associated with ethical dilemmas. Though effective in reducing virilisation in girls with CAH, it entails exposure to high doses of GC in fetuses that do not benefit from the treatment. The current paper provides an update on the literature on outcomes of prenatal DEX treatment in CAH cases and unaffected subjects. Long-term follow-up research is still needed to determine treatment safety. In addition, advances in early prenatal diagnostics for CAH and sex-typing as well as studies assessing dosing effects of DEX may avoid unnecessary treatment and improve treatment safety.

Effect of an electronic reminder of follow-up screening after pregnancy complicated by gestational diabetes mellitus: a randomized controlled trial.

AIM: To determine the effectiveness of despatching an electronic reminder of participation in screening for gestational diabetes. The reminder was sent to the women 1-8 years after delivery. METHODS: A registry-based, randomized controlled trial in the North Denmark Region among women with gestational diabetes. Randomization was made, which included seven groups stratified by the child's birth year (2012-2018). The intervention group received standard care supplemented by an electronic reminder through a secure nationwide email system (n = 731), while the control group received only standard care (n = 732). The primary outcome was based on blood testing for diabetes (OGTT, HbA1c or fasting P-glucose). RESULTS: A total of 471 (32.1%) women participated in screening. The primary outcome was experienced by 257 women (35.1%) in the intervention group and 214 women (29.2%) in the control group. The effect of the reminder seemed to increase with recipient's age, non-western origin, urban dwelling, and multiparity. Of those who participated in follow-up screening, 56 (3.8%) were diagnosed with type 2 diabetes. CONCLUSION: Electronic reminders, based on the principles of informed choice and patient-centred care, to women have been shown to support life-long participation in follow-up screening. Attempts to further stimulation of coverage could however be considered. TRAIL REGISTRATION: ISRCTN registry (22/04/2022, ISRCTN23558707).

Doctors, teach your adrenal insufficiency patients well: provide them with a European Emergency Card!

Adrenal insufficiency is a life-threatening condition requiring chronic glucocorticoid replacement therapy, as well as stress adaptation to prevent adrenal crises. To increase patients' self-sustainability, education on how to tackle an adrenal crisis is crucial. All patients should carry the European Emergency Card.

Patient journey experiences may contribute to improve healthcare for patients with rare endocrine diseases.

Patient journeys are instruments developed by EURORDIS, The Voice of Rare Disease Patients in Europe, to collect patients' experiences; they may identify gaps and areas deserving improvement, as well as elements positively considered by affected persons. As with other patient-reported experiences, they can complete the clinical evaluation and management of a specific disease, improving the often long diagnostic delay, therapy, patient education and access to knowledgeable multidisciplinary teams. This review discusses the utility of such patient-reported experience measures and summarises the experiences of patients with acromegaly, Addison's disease and congenital adrenal hyperplasia from different European countries. Despite rare endocrine diseases being varied and presenting differently, feelings of not having been taken seriously by health professionals, family and friends was a common patient complaint. Empathy and a positive patient-centred environment tend to improve clinical practice by creating a trustworthy and understanding atmosphere, where individual patient needs are considered. Offering access to adequate patient information on their disease, treatments and outcome helps to adapt to living with a chronic disease and what to expect in the future, contemplating the impact of a disease on patients' everyday life, not only clinical outcome but also social, financial, educational, family and leisure issues is desirable; this facilitates more realistic expectancies for patients and can even lead to a reduction in health costs. Patient empowerment with patient-centred approaches to these complex or chronic diseases should be contemplated more and more, not only for the benefit of those affected but also for the entire health system.

The pathway and characteristics of patients with non-specific symptoms of cancer: a systematic review.

BACKGROUND: Non-specific symptoms are common and often sign of a non-serious disease. Because of this, patients with non-specific symptoms of cancer (NSSC) present a challenge for general practitioners (GP). Studies describing characteristics of patients with NSSC have been done after fast-track pathways were created to diagnose and treat patients with NSSC. This study reviews characteristics of patients with NSSC and their patient pathways. MATERIALS AND METHODS: Database searches of Embase, Cochrane, PubMed, Cinahl and Web of Science were performed. Search terms used were cancer, patient pathway, and NSSC with their synonyms. The flow diagram Preferring Reporting Items for Systematic Review was applied to the systematic search. The Newcastle-Ottawa Assessment Scale (NOS) was used to compare the quality of the included studies. RESULTS: Twelve studies met the inclusion criterias. All studies were considered to be of high methodological quality. Patient Pathway: 11-35% of patients were diagnosed with cancer. Median number of days through diagnostic process was 7-10. PATIENT CHARACTERISTICS: The most prevalent cancers included hematological-(14-30%), gastrointestinal-(13-23%) and lung cancers (13%). Rheumatological, musculoskeletal and gastrointestinal diseases were among the most common non-malignant diseases diagnosed. Weight loss, fatigue, pain and loss of appetite were the most common symptoms. Cardiovascular diseases, lung diseases, diabetes and previous diagnosed cancer were the most common comorbidities. Mean age of included patients was 60-72 years. CONCLUSION: Limited number of studies were found and they lacked sufficient heterogenic data to conduct a metaanalysis. Symptoms, diagnoses, age and gender were described with some heterogenic results. Further studies should be conducted to gather broader knowledge about patients with NSSC.

Follow-up after gestational diabetes: a qualitative study of perspectives from general practices.

BACKGROUND: Women whose pregnancies are complicated by gestational diabetes mellitus (GDM) are approximately eight times more likely to develop type 2 diabetes mellitus (T2DM). Although regular participation in follow-up screening increases the chance of early detection of diabetes, participation rates are often suboptimal. A better understanding of general practice as a key contextual setting for screening could help inform the development and adoption of, for example, electronic reminder interventions to support women's participation. AIM: To explore the perspectives of GPs and relevant staff members engaged in early detection of diabetes after gestational diabetes in order to identify barriers to and facilitators of follow-up screening. DESIGN & SETTING: A qualitative interview study undertaken in general practices in the North Denmark Region. METHOD: Based on a purposive sample strategy, 18 semi-structured interviews of 12 GPs and six staff members, who were either nurses or midwives, were analysed using a reflexive thematic analytical approach. RESULTS: The following three main themes were formulated: (1) challenges of addressing women's risk; (2) prioritisation of early detection of diabetes; and (3) system influence on clinical procedures. CONCLUSION: Follow-up screening was facilitated by knowledge of guidelines. Professional collaboration and adaptation support were found to lead to successful implementation of guidelines in general practice. Supporting GPs and their staff's reflection and discussion of ways to engage in communication and decisionmaking processes with women is, however, important; it was found to create an important barrier to follow-up screening. Overall, the findings can help inform the future development of interventions to increase uptake.

Factors Associated With Nonattendance in a Nationwide Screening Program for Diabetic Retinopathy: A Register-Based Cohort Study.

OBJECTIVE: The aim of the study was to identify factors associated with nonattendance in a Danish nationwide screening program for diabetic retinopathy among people with type 2 diabetes. RESEARCH DESIGN AND METHODS: A retrospective observational study linking individual-level register data was performed. First, we compared characteristics of 156,878 people with type 2 diabetes divided into attenders and never-attenders on the basis of their screening history over a 6-year period. Second, we assessed 230,173 screening intervals within the same 6-year period. Mixed-effects models were used to investigate the effect of sociodemographic and health-related factors on the likelihood of having a nonattender interval (i.e., failing to attend screening within the recommended interval). RESULTS: A total of 42,068 (26.8%) people were identified as never-attenders, having no registered eye screening over a 6-year period. Compared with attenders, never-attenders were more frequently divorced/widowed, lived in the Capital Region of Denmark, and had poorer health. A total of 62,381 (27.1%) screening intervals were identified as nonattender intervals. Both sociodemographic and health-related factors were significantly associated with the likelihood of having a nonattender interval. The largest odds ratios for nonattendance were seen for mental illness, nonwestern descent, divorce, comorbidity, and place of residence. CONCLUSIONS: Our findings suggest that never- and nonattendance of screening for diabetic retinopathy are more common among people who are divorced/widowed and of poorer health. Additionally, nonattendance is more frequent among people of nonwestern decent. These population subgroups may benefit from targeted interventions aimed at increasing participation in diabetic retinopathy screening.

Clinical and biochemical characteristics of postpancreatitis diabetes mellitus: A cross-sectional study from the Danish nationwide DD2 cohort.

BACKGROUND: Postpancreatitis diabetes mellitus (PPDM) is a common metabolic sequalae of acute and chronic pancreatitis. We conducted a cross-sectional study to examine the proportion of PPDM among patients clinically diagnosed with type 2 diabetes (T2D) in Denmark and their clinical and biochemical characteristics. METHODS: We identified all past diagnoses of pancreatitis among patients in the Danish Centre for Strategic Research in Type 2 Diabetes (DD2) cohort through linkage with national health registries. Using International Classification of Diseases, Tenth Revision codes we categorized patients as PPDM and further divided them into acute/chronic subtypes (PPDM-A and PPDM-C). We assessed PPDM prevalence and examined associations with clinical and biochemical parameters using log binomial or Poisson regression to calculate age-/sex-adjusted prevalence ratios (aPRs). RESULTS: Among 5564 patients with a clinical diagnosis of T2D, 78 (1.4%) had PPDM. Compared to T2D, PPDM patients were more often underweight or normal weight (body mass index ≤25.0 kg/m2 : aPR 2.3; 95% confidence interval [CI]: 1.6-3.2) and had lower waist-to-hip ratio (≤0.95/≤0.80 in men/women: aPRs 1.8; 95% CI: 1.2-2.7). PPDM patients had lower plasma amylase levels (<17 U/L: aPRs 2.2; 95% CI: 1.1-4.3), higher insulin sensitivity (homeostatic model assessment 2S [HOMA2S] >63: aPR 2.0; 95% CI: 1.2-3.2) and tended to have worse glycaemic control (HbA1c ≥8.0%: aPRs 1.4; 95% CI: 0.8-2.4). PPDM-A was largely indistinguishable from T2D, whereas PPDM-C had impaired insulin secretion, higher insulin sensitivity, and worse glycemic control. CONCLUSIONS: The proportion of PPDM among patients with clinically diagnosed T2D is ~1.5% in an everyday clinical care setting. Glucose metabolism of PPDM-A is largely indistinguishable from T2D, whereas PPDM-C differs in relation to insulin secretion and sensitivity.

A qualitative study on dyad practice in a clinical setting.

INTRODUCTION: General practice in Denmark is at risk of experiencing an educational capacity problem in which the quality of medical students' clinical stays is compromised due to reduced tutor capacity. Dyad practice, in which students work and acquire competencies in pairs, is known from simulation and ultrasound training to be as effective with regard to learning outcome as single practice despite reduced hands-on time. This study aimed to explore the experience of dyad practice during a group of medical students' first clinical stay in general practice. METHODS: A focus group interview was conducted with eight medical students who had attended clinical stays in general practice in four dyads. Individual semi-structured interviews were held with three general practitioners who tutored the medical students during the clinical stays. Data were transcribed by the interviewer and analysed using systematic text condensation. RESULTS: Both the medical students and general practitioners described how dyad practice enhanced the students' self-reflection and introduced new learning experiences. Furthermore, the medical students experienced shared memory with their peer and a broader overview before, during and after the consultation with the patient. CONCLUSIONS: Dyad practice was experienced by both medical students and general practitioners as suitable for medical students' first-time clinical stay in general practice. Dyad practice may thus reduce the capacity problems with regard to medical education in general practice. FUNDING: This study was funded in part by the PLU Foundation. TRIAL REGISTRATION: not relevant.

Identification of Important Factors Affecting Use of Digital Individualised Coaching and Treatment of Type 2 Diabetes in General Practice: A Qualitative Feasibility Study.

Most type 2 diabetes patients are treated in general practice and there is a need of developing and implementing efficient lifestyle interventions. eHealth interventions have shown to be effective in promoting a healthy lifestyle. The purpose of this study was to test the feasibility, including the identification of factors of importance, when offering digital lifestyle coaching to type 2 diabetes patients in general practice. We conducted a qualitative feasibility study with focus group interviews in four general practices. We identified two overall themes and four subthemes: (1) the distribution of roles and lifestyle interventions in general practice (subthemes: external and internal distribution of roles) and (2) the pros and cons for digital lifestyle interventions in general practice (subthemes: access to real life data and change in daily routines). We conclude that for digital lifestyle coaching to be feasible in a general practice setting, it was of great importance that the general practitioners and practice nurses knew the role and content of the intervention. In general, there was a positive attitude in the general practice setting towards referring type 2 diabetes patients to digital lifestyle intervention if it was easy to refer the patients and if easily understandable and accessible feedback was implemented into the electronic health record. It was important that the digital lifestyle intervention was flexible and offered healthcare providers in general practice an opportunity to follow the type 2 diabetes patient closely.

Therapy options for adrenal insufficiency and recommendations for the management of adrenal crisis.

Adrenal insufficiency (AI) is a life-threatening condition requiring life-long glucocorticoid (GC) substitution therapy, as well as stress adaptation to prevent adrenal crises. The number of individuals with primary and secondary adrenal insufficiency in Europe is estimated to be 20-50/100.000. A growing number of AI cases are due to side effects of GC treatment used in different treatment strategies for cancer and to immunotherapy in cancer treatment. The benefit of hormone replacement therapy is evident but long-term adverse effects may arise due to the non-physiological GC doses and treatment regimens used. Given multiple GC replacement formulations available comprising short-acting, intermediate, long-acting and novel modified-release hydrocortisone as well as subcutaneous formulations, this review offers a concise summary on the latest therapeutic improvements for treatment of AI and prevention of adrenal crises. As availability of various glucocorticoid formulations and access to expert centers across Europe varies widely, European Reference Networks on rare endocrine conditions aim at harmonizing treatment and ensure access to specialized patient care for individual case-by-case treatment decisions. To improve the availability across Europe to cost effective oral and parenteral formulations of hydrocortisone will save lives.

EndoERN patient survey on their perception of health care experience and of unmet needs for rare endocrine diseases.

Patients' perceptions on quality of care and gaps in diagnosis/management of rare endocrine diseases (RED) were collected in a 21-item questionnaire, answered on-line in the patients' language. There were 598 (66% females) responses from 29 countries reflecting pituitary, adrenal, thyroid, parathyroid, gonadal, genetic and autoimmune diseases. While in 36% a diagnosis was made in <1 year, in 28% it took >5 years. In 64% it took 2-7 professionals for a correct diagnosis, after which in >50% a specialist/specific treatment was available within 1 month; 60% were satisfied with current treatment. Most (59-67%) would have liked access to psychological support, social worker, dietician or physiotherapist/rehabilitation specialists. Half were satisfied with information received, treatment and health care follow-up; 87% contacted patient/support groups; 78% agreed that "The personal limitations related to the disease, impact on my everyday quality of life". Conclusion: Diagnostic delay in RED is still unsatisfactory in Europe, as well as specific needs impacting QoL.