Much to be desired in self-management of patients with adrenal insufficiency.

We assessed self-management in patients with adrenal insufficiency and patient-related factors that affect self-management. A self-report questionnaire was developed to assess self-management. The questionnaire contained three main topics, including: (i) medication adherence; (ii) anticipated measures; and (iii) dose adaptation during medical emergencies. Sixty per cent of the patients (n = 116) completed the questionnaire. The score for the medication adherence was 3.5 out of 4. The score for anticipated measures was 3.4 out of 5, and dose adaptation during medical emergencies was 1.9 out of 3. Older age was a positive predictor for all three self-management topics. The female sex was a positive predictor for anticipated measures and dose adaptation during medical emergencies. High education level was associated with higher scores on dose adaptation during medical emergencies in women, not in men. Education level did not affect other self-management aspects. There seems to be a need to improve self-management in these patients. Self-management might be improved by continuous education, and involvement of endocrine nurses and nurse practitioners is likely to be a key factor in the effectiveness of patient education.

Key Device Attributes for Injectable Somatostatin Receptor Ligand Therapy in Acromegaly and Neuroendocrine Tumours.

INTRODUCTION: People living with acromegaly and neuroendocrine tumours (NETs) may be treated with injectable somatostatin receptor ligands (SRLs), administered by either a caregiver or as self-injection via a proprietary or generic device. Injection device attributes that contribute to ease of use and storage, minimise preparation requirements, and reduce injection pain are associated with improved adherence and more favourable therapeutic outcomes. The aim of this study was to assess current opinion surrounding favourable SRL device attributes for people living with acromegaly and NETs as well as that of their caregivers. METHODS: Participants (healthcare professionals [HCPs] and patients/non-HCP caregivers) from 11 countries were invited to answer survey questions related to their demographic, experience, and preferences as they relate to the real-world use of injectable SRL devices. Questions were developed based on review of available literature and meetings with a Scientific Committee. RESULTS: Device attributes preferred by the patient/non-HCP caregiver group (n = 211) included confidence that the correct drug amount is delivered (76%), quick administration with minimal pain/discomfort (68%), and device safety (needle-safety and low risk of contamination; 53%). Device attributes preferred by HCPs (n = 52) were quick administration with minimal pain/discomfort (69%), correct use is easy to learn, confidence in handling the device (63%), and confidence that the correct drug amount is delivered (62%). CONCLUSION: The results identified key features of injection devices for SRL therapy which merit consideration for optimal management and underscore the importance of patient partnership in treatment decisions.

We mind your step: understanding and preventing drop-out in the transfer from paediatric to adult tertiary endocrine healthcare.

Introduction: Transition from paediatric to adult endocrinology can be challenging for adolescents, their families and healthcare professionals. Previous studies have shown that up to 25% of young adults with endocrine disorders are lost to follow-up after moving out of paediatric care. This poses a health risk for young adults, which can lead to serious and expensive medical acute and long-term complications. Methods: In order to understand and prevent dropout, we studied electronic medical records of patients with endocrine disorders. These patients were over 15 years old when they attended the paediatric endocrine outpatient clinic (OPC) of our hospital in 2013-2014 and should have made the transfer to adult care at the time of the study. Results: Of 387 adolescents, 131 had an indication for adult follow-up within our university hospital. Thirty-three (25%) were lost to follow-up. In 24 of them (73%), the invitation for the adult OPC had never been sent. We describe the failures in logistic processes that eventually led to dropout in these patients. Conclusion: We found a 25% dropout during transfer from paediatric to adult tertiary endocrine care. Of all dropouts, 73% could be attributed to the failure of logistic steps. In order to prevent these dropouts, we provide practical recommendations for patients and paediatric and adult endocrinologists.

[Small bowel neuroendocrine tumours: to be considered in the differential diagnosis of unexplained abdominal pain and diarrhoea]. / Neuro-endocriene tumoren van de dunne darm.

Small bowel neuroendocrine tumours (NET) are relatively rare malignancies. Due to the lack of specificity, the symptoms are usually initially attributed to irritable bowel syndrome. Frequently there is a delay of years after the onset of symptoms, before the diagnosis is made. We describe two patient cases with a small bowel NET that illustrate the typical course of the symptoms, as well as the complications of carcinoid syndrome, carcinoid heart disease, mesenteric venous congestion and arterial ischemia. On coloscopy the primary tumour can often not be reached. CT scan is the best diagnostic modality and should be considered in a patient with abdominal pain, diarrhoea, weight loss and a negative coloscopy, especially in the presence of flushing. In a non-curative situation, first-line treatment consists of a somatostatin analogue, in order to prolong progression-free survival and reduce hormonal hypersecretion. Palliative surgery can also play an important role in the management of small bowel NET.

Impact of parathyroidectomy for primary hyperparathyroidism on quality of life: A case-control study using Short Form Health Survey 36.

BACKGROUND: Physical and mental complaints are common in patients with primary hyperparathyroidism (PHPT) and negatively impact quality of life (QOL). Subjective symptoms in current guidelines are not considered an indication for surgery. The purpose of this study was to assess the effect of parathyroidectomy on QOL in patients with PHPT. METHODS: This multicenter case-control study investigated preoperative and postoperative QOL scores in patients operated for PHPT, measured with the Short Form Health Survey-36 (SF-36) questionnaire. Results were compared with patients undergoing a hemithyroidectomy, the control group. RESULTS: Fifty-two patients and 49 controls were included. Patients with PHPT had significantly lower QOL scores preoperatively and improved significantly after successful surgical treatment. Postoperatively, no differences were observed between the 2 groups. CONCLUSION: QOL was significantly lower in patients with untreated PHPT. Surgical treatment was associated with a significant increase in QOL. Decreased QOL should also be considered as an indicator for surgical treatment in patients with PHPT. © 2016 Wiley Periodicals, Inc. Head Neck 38:1213-1220, 2016.

[Outpatient surgical treatment of primary hyperparathyroidism]. / Operatieve behandeling van primaire hyperparathyreoïdie in dagbehandeling.

The standard of care for primary hyperparathyroidism is minimally invasive surgical removal of hyperfunctional parathyroid tissue. Abroad, this minimally invasive approach is often performed in the ambulatory setting. Patients with primary hyperparathyroidism are eligible for outpatient surgery if the risk of conducting the operation is low and various imaging techniques have confirmed the location of the parathyroid adenoma. Of 20 patients with primary hyperparathyroidism who had been treated at our hospital's day surgery department, 5 visited the emergency department the next day because of a tingling sensation; however, minor hypocalcaemia was observed in only 1 of these patients. This relatively high number of emergency-department visits may have been the result of the strict instructions given to the patients or a rapid fall in their serum calcium levels, even without this having resulted in hypocalcaemia. Calcium supplementation is affordable and safe and could reduce the number of visits to the emergency ward after outpatient treatment of hyperparathyroidism.