The cerebellar cortex volume is smaller in active CS patients than in controls. This finding is associated with poor visual memory and quality of life and is mostly pronounced in patients with higher triglyceride levels and older age at diagnosis.
Objective: To evaluate health-related quality of life (HRQoL) in Cushing's syndrome (CS) with the disease-generated CushingQoL questionnaire and to confirm its psychometric properties of test-retest reliability and sensitivity to change. Design: Clinical practice conditions in a tertiary referral center. Methods: The CushingQoL and EuroQoL questionnaires were administered at baseline and during follow-up and correlated with clinical parameters in 59 patients with CS. To check test-retest reliability, stable patients (either biochemically cured or with active hypercortisolism) were evaluated twice. To investigate sensitivity to change, new patients were evaluated at diagnosis and twice more following improvement after successful surgery. Results: At baseline, patients with active disease scored lower (indicating worse HRQoL) than those cured on the CushingQoL (46G14 vs 58G20, P!0.05) but not on the EuroQoL-visual analog scale (VAS; 64G20 vs 70G16, P NS). Test-retest reliability of CushingQoL was confirmed in stable patients, both in the 'cured group' (intraclass correlation coefficient (ICC)Z0.78, nZ34) and in the 'active group' (ICCZ0.66, nZ14). Sensitivity to change was confirmed in the 'improvement group' (nZ11), as the CushingQoL score increased 4G1.5 and 9G3 months after surgery (P!0.01 and !0.001 respectively); the EuroQoL-VAS only improved after 9G3 months (P!0.01). Effect sizes were 1.02 and 1.86 for CushingQoL at 4G1.5 and 9G3 months respectively. Finally, scores of both questionnaires were correlated (rZ0.504; P!0.001).Conclusions: The CushingQoL questionnaire shows good test-retest reliability and sensitivity to change in clinical practice conditions.
10 Abstract Cushing's syndrome (CS) is a rare endocrine 11 disease, due to cortisol hypersecretion. CS patients have 12 comorbidities, often still present after biochemical cure. 13 Specific nursing healthcare programs to address this dis-14 ease and achieve improved health related quality of life 15 (HRQoL) are lacking. Thus, an educational nursing inter-16 vention, through the development and promotion of 17 specific educational tools, appears to be justified. The 18 objective of this study is to assess the effectiveness of an 19 educational nursing program in CS patients on HRQoL, 20 clinical parameters, level of pain and physical activity, 21 patterns of rest, and use of health resources. A prospective, 22 randomized study was conducted in two reference hospitals 23 for CS. Sixty-one patients (mean age 47 ± 12.7 years, 24 83.6 % females) were enrolled and divided into 2 groups: 25 an ''intervention'' group where educational sessions were 26 performed over 9 months and a ''control'' group, without 27 these sessions. Specific questionnaires were used at the 28 beginning and end of the study. After educational sessions, 29 the intervention group had a better score in the Cush-30 ingQoL questionnaire (p \ 0.01), reduced level of pain 31 (p \ 0.05), improved physical activity (p \ 0.01) and 32 healthy lifestyle (p \ 0.001) compared to the control 33 group. A correlation between the CushingQoL score and 34 reduced pain (r = 0.46, p \ 0.05), improved physical 35 activity (r = 0.89, p \ 0.01), and sleep (r = 0.53, 36 p = 0.01) was observed. This educational nursing program 37 improved physical activity, healthy lifestyle, better sleep 38 patterns, and reduced pain in CS patients, influencing 39 HRQoL and reducing consumption of health resources. 40 Moreover, the brief nature of the program suggests it as a 41 good candidate to be used in CS patients. Patients with cushing's syndrome (CS) suffer from multi-47 ple comorbidities, mainly cardiovascular (hypertension, 48 atherosclerosis, changes in heart functionality), and meta-49 bolic (dyslipidemia, central obesity, diabetes), as well as 50 thrombotic disorders, bone disorders, cognitive and neu-51 ropsychological impairment, and impaired sexual function 52 due to glucocorticoid (GC) excess [1][2][3][4][5][6].53 The assumption that resolution of hypercortisolism 54 normalized comorbidities is currently questioned, since R E V I S E D P R O O F55 there is evidence that cured CS patients still have increased 56 morbidity and mortality despite endocrine control [7][8][9]. 57 Most patients with CS develop metabolic syndrome, which 58 may persist after remission of hypercortisolism, con-59 tributing to increased cardiovascular risk and deserve to be 60 treated according to common standard practice [7]. 61 Awareness of this persistent increase in cardiovascular risk 62 in CS patients after endocrine cure leads to strict control of 63 improvable factors, including blood pressure, dyslipemia, 64 hyperglycemia, smoking, obesity, and prothrombotic state 65 [10]. 66 There is am...
Systematic evaluation of QoL in patients with pituitary diseases provides information not always contemplated by hormonal and routine clinical evaluation; this allows detection of not often contemplated health problems, which may then be approached and treated, improving the care provided to these patients.
The purpose of this review is to describe how quality of life (QoL) is impaired in patients with hypercortisolism due to Cushing's syndrome of any aetiology, including pituitary-dependent Cushing's disease. It is worse in active disease, but improvement after successful therapy is often incomplete, due to persistent physical and psychological co-morbidities, even years after endocrine "cure". Physical symptoms like extreme fatigability, central obesity with limb atrophy, hypertension, fractures, and different skin abnormalities severely impair the affected patients' everyday life. Psychological and cognitive problems like bad memory, difficulties to concentrate and emotional distress, often associated with anxiety and depression, make it difficult for many patients to overcome the aftermath of treated Cushing's syndrome. Recent studies have shown diffuse structural abnormalities in the central nervous system during active hypercortisolism, thought to be related to the wide distribution of glucocorticoid receptors throughout the brain. Even though they improve after treatment, normalization is often not complete. Shortening the exposure to active Cushing's syndrome by reducing the often long delay to diagnosis and promptly receiving effective treatment is highly desirable, together with preparing the patient for the difficult periods, especially after surgery. In this way they are prepared for the impairments they perceive in every day life, and live with the hope of later improvement, which can be therapeutic in many instances.
• ▶ body composition • ▶ Cushing ' s syndrome • ▶ rheumatoid arthritis • ▶ glucocorticoids Body Composition After Endogenous (Cushing ' s Syndrome) and Exogenous (Rheumatoid Arthritis) Exposure to Glucocorticoids abolition of the normal male to female diff erence in visceral fat [5]. It has been assumed that resolution of hypercortisolism is followed by normalization of body composition; a decrease in fat mass has been reported in the early recovery after successful treatment of CS [6, 7]. However, patients who have suff ered from CS, often complain of central obesity, despite successful treatment, which may even have rendered them adrenal insuffi cient. Persistence of increased cardiovascular risk and carotid atherosclerosis has been reported in patients with CS after fi ve years of cure [8]. Moreover, there could be a relationship between cortisol and fasting glucose [9]. Rheumatoid arthritis (RA) is a chronic, systemic infl ammatory disorder that may aff ect many tissues and organs, but principally attacks the joints producing an infl ammatory synovitis that often progresses to destruction of the articular carti
Objective: Cushing's syndrome (CS) is associated with high cardiovascular risk. White matter lesions (WML) are common on brain magnetic resonance imaging (MRI) in patients with increased cardiovascular risk. Aim: To investigate the relationship between cardiovascular risk, WML, neuropsychological performance and brain volume in CS. Design/methods: Thirty-eight patients with CS (23 in remission, 15 active) and 38 controls sex-, age-and education-level matched underwent a neuropsychological and clinical evaluation, blood and urine tests and 3Tesla brain MRI. WML were analysed with the Scheltens scale. Ten-year cardiovascular risk (10CVR) and vascular age (VA) were calculated according to an algorithm based on the Framingham heart study. Results: Patients in remission had a higher degree of WML than controls and active patients (P!0.001 and PZ0.008 respectively), which did not correlate with cognitive performance in any group. WML severity positively correlated with diastolic blood pressure (rZ0.659, PZ0.001) and duration of hypertension (rZ0.478, PZ0.021) in patients in remission. Both patient groups (active and in remission) had higher 10CVR (PZ0.030, PZ0.041) and VA than controls (PZ0.013, PZ0.039). Neither the 10CVR nor the VA correlated with WML, although both negatively correlated with cognitive function and brain volume in patients in remission (P!0.05). Total brain volume and grey matter volume in both CS patient groups were reduced compared to controls (total volume: active PZ0.006, in remission PZ0.012; grey matter: active PZ0.001, in remission PZ0.003), with no differences in white matter volume between groups. Conclusions: Patients in remission of Cushing's syndrome (but not active patients) have more severe white matter lesions than controls, positively correlated with diastolic pressure and duration of hypertension. Ten-year cardiovascular risk and vascular age appear to be negatively correlated with the cognitive function and brain volume in patients in remission of Cushing's syndrome.
The scale has been designed and validated incorporating the perspective of critical care patients. Thanks to its reliability and validity, this questionnaire can be used both in research and in clinical practice. The scale offers a possibility to assess and develop interventions to improve patient satisfaction with nursing care.
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