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

Webb, Susan M.; Kristensen, Jette Kolding; Vitali, Diana; Klink, Sandra van; Beuzekom, Charlotte van; Santos, Alicia; Nordenström, Anna

doi:10.1007/s12020-021-02625-0

Cited by 5 publications

(5 citation statements)

References 8 publications

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“…Collaboration between specialised centres facilitates the exchange of highly specialised expertise throughout the European Union and thus allows access to medical expertise without patients having to travel. ENDO-ERN aims to improve the care of rare endocrinopathies and rare forms of diabetes ( 3 , 4 , 5 , 7 ). For this purpose, a Europe-wide network for patient-oriented, structured, targeted and scientific cooperation is in place.…”

Section: Introductionmentioning

confidence: 99%

Skin manifestations in rare types of diabetes and other endocrine conditions

Reschke

Biester

Berge

et al. 2023

Endocrine Connections

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As the most visible and vulnerable organ of the human organism, the skin can provide an impression of its state of health. Rare forms of diabetes and endocrinopathies are often diagnosed late or primarily misinterpreted due to their rarity. Skin peculiarities associated with these rare diseases may be indicative of the underlying endocrinopathy or form of diabetes. At the same time, rare skin changes in diabetes or endocrinopathies can also be a major challenge for dermatologists, diabetologists and endocrinologists in optimal patient and therapy management. Active collaboration between these different specialist groups can therefore lead to increased patient safety, better therapeutic success and more targeted diagnostics.

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Section: Introductionmentioning

confidence: 99%

Skin manifestations in rare types of diabetes and other endocrine conditions

Reschke

Biester

Berge

et al. 2023

Endocrine Connections

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“…The concepts of patient-reported outcome measures and patient-reported experience measures (PREMs) are nowadays considered more and more important in healthcare evaluation; in fact, improved PREMs are shown to be associated with the enhancement in the quality of healthcare, better financial outcome of health institutions and is even a predictor of survival ( 1 , 2 , 3 , 4 , 5 ). Patients especially associate a better outcome to the level of communication with and trust in their doctors and nurses, as well as sufficient information and understanding of outcome ( 4 , 7 ). ‘Patient journeys’ (PJ) are instruments developed to collect information on patients’ experiences in many areas of medicine, including rare diseases ( 8 ).…”

Section: Introductionmentioning

confidence: 99%

“…For patients with rare diseases, a long diagnostic delay and visits to many healthcare professionals before a correct diagnosis is reached may determine suffering and anxiety for years; therefore, when a diagnosis is finally reached, their degree of satisfaction is high, especially when additional support and information on their disease and consequences are available ( 7 , 11 ). Neonatal screening may shorten the time to diagnosis for some diseases such as congenital adrenal hyperplasia and thereby prevent sequelae or neonatal death, in addition to the psychological aspects of avoiding diagnostic delay.…”

Section: Introductionmentioning

confidence: 99%

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

Webb

Kristensen

Nordenström³

et al. 2022

Endocrine Connections

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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 (PREMs) and summarizes 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, for the benefit of those affected, but also for the entire health system.

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“…Mortality and morbidities can be reduced successfully if patients are treated using a multimodal approach with comprehensive comorbidity management, as biochemical control should not be the only treatment goal 1,8 . A survey has recently highlighted that patients with rare diseases often do not have access to psychological support 9 …”

Section: Introductionmentioning

confidence: 99%

“…1,8 A survey has recently highlighted that patients with rare diseases often do not have access to psychological support. 9 Patients with acromegaly usually show poor scores in psychopathology/psychosocial questionnaires. [2][3][4] In other diseases, Mindfulness interventions have improved altered scores, in particular mood, cognitive performance and quality of life.…”

Section: Introductionmentioning

confidence: 99%

The effect of mindfulness therapy in acromegaly, a pilot study

Santos

Nalin²,

Bortolotti

et al. 2022

Clinical Endocrinology

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Background Patients with acromegaly have often several comorbidities, including decreased quality of life, mood alterations and chronic pain. Mindfulness is effective at improving mood, quality of life and pain management; however, there is no data available on its effect in patients with acromegaly. Objective We aimed at evaluating changes in quality of life, mood, pain, sleep, self‐compassion, life satisfaction, blood pressure and heart rate after a mindfulness program. Design and Patients This was a randomized, multicentre, international clinical trial (Barcelona‐BCN and Bergamo‐BG) of 60 patients, 30 per centre. Measurements The intervention group participated in an 8‐week face‐to‐face group program; the control group followed normal clinical routine. In BG, patients performed a classic Mindfulness Based Stress Reduction program; in BCN they performed an adapted program including elements of mindfulness and compassion with a greater focus on daily life. Results In the BCN intervention group there was an increase in night‐time hours in bed (p = 0.05) after the program. In both centres there was a trend to a reduction of the time to start sleeping (p = 0.06 BCN, p = 0.07 BG). In BCN, the intervention group reduced the pain score compared to the control group (p = .02), and an improvement in self‐compassion was found (p = .04). In both centres, heart rate decreased significantly in the intervention group during a single 2‐hour session. This was evidenced at the first and the last program session (BCN p = .013 and p = .009; BG < 0.001 and p = .04). A training effect was found in BG, where heart rate fell more in the last session than in the first (p = 002). Conclusions We have demonstrated for the first time the value of a mindfulness program in patients with acromegaly, analysing possible effects and advantages, and clarifying the usefulness of a specific protocol for the disease.

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

Cited by 5 publications

References 8 publications

Skin manifestations in rare types of diabetes and other endocrine conditions

Skin manifestations in rare types of diabetes and other endocrine conditions

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

The effect of mindfulness therapy in acromegaly, a pilot study

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