scholarly journals MANAGEMENT OF ENDOCRINE DISEASE: The burden of Cushing's disease: clinical and health-related quality of life aspects

2012 ◽  
Vol 167 (3) ◽  
pp. 311-326 ◽  
Author(s):  
R A Feelders ◽  
S J Pulgar ◽  
A Kempel ◽  
A M Pereira
Keyword(s):  
Quality Of Life ◽  
Cushing’S Disease ◽  
Treatment Options ◽  
Current Treatment ◽  
Cushing's Disease ◽  
Health Related Quality ◽  
Time To Diagnosis ◽  
Related Quality ◽  
Health Related

ObjectiveCushing's disease (CD) is a rare endocrine disorder characterized by excess secretion of ACTH due to a pituitary adenoma. Current treatment options are limited and may pose additional risks. A literature review was conducted to assess the holistic burden of CD.DesignStudies published in English were evaluated to address questions regarding the epidemiology of CD, time to diagnosis, health-related quality of life (HRQoL), treatment outcomes, mortality, prevalence of comorbidities at diagnosis, and reversibility of comorbidities following the treatment.MethodsA two-stage literature search was performed in Medline, EMBASE, and Science Citation Index, using keywords related to the epidemiology, treatment, and outcomes of CD: i) articles published from 2000 to 2012 were identified and ii) an additional hand search (all years) was conducted on the basis of bibliography of identified articles.ResultsAt the time of diagnosis, 58–85% of patients have hypertension, 32–41% are obese, 20–47% have diabetes mellitus, 50–81% have major depression, 31–50% have osteoporosis, and 38–71% have dyslipidemia. Remission rates following transsphenoidal surgery (TSS) are high when performed by expert pituitary surgeons (rates of 65–90%), but the potential for relapse remains (rates of 5–36%). Although some complications can be partially reversed, time to reversal can take years. The HRQoL of patients with CD also remains severely compromised after remission.ConclusionsThese findings highlight the significant burden associated with CD. As current treatment options may not fully reverse the burden of chronic hypercortisolism, there is a need for both improved diagnostic tools to reduce the time to diagnosis and effective therapy, particularly a targeted medical therapy.

scholarly journals Treatment effectiveness of pasireotide on health-related quality of life in patients with Cushing's disease

2014 ◽  
Vol 171 (1) ◽  
pp. 89-98 ◽  
Author(s):  
Susan M Webb ◽  
John E Ware ◽  
Anna Forsythe ◽  
Min Yang ◽  
Xavier Badia ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cushing’S Disease ◽  
Treatment Effectiveness ◽  
Clinical Signs ◽  
Signs And Symptoms ◽  
Cushing's Disease ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

ObjectiveCushing's disease (CD) can significantly impair patients' health-related quality of life (HRQOL). This study investigated the treatment effectiveness of pasireotide on HRQOL of CD patients, and assessed the relationships between HRQOL and urinary free cortisol (UFC) and CD-related signs and symptoms.DesignIn this phase III, randomized, double-blind study, patients with UFC ≥1.5×upper limit of normal (ULN) received s.c. pasireotide 600 or 900 μg twice daily. The trial primary endpoint was UFC at or below ULN at month 6 without dose titration. Open-label treatment continued through month 12. HRQOL was measured using the Cushing's Quality of Life Questionnaire (CushingQoL) instrument at baseline and follow-up visits until month 12 during which clinical signs and features of CD, and the Beck Depression Inventory II (BDI-II), were also collected.MethodsPearson's/Spearman's correlations between changes in CushingQoL and changes in clinical signs and symptoms were assessed. Changes in CushingQoL and the proportion of patients achieving a clinically meaningful improvement in CushingQoL were also compared among patients stratified by mean UFC (mUFC) control status (controlled, partially controlled, and uncontrolled) at month 6. Analyses were also conducted at month 12, with multivariable adjustment for baseline characteristics and CushingQoL.ResultsChange in CushingQoL was significantly correlated with changes in mUFC (r=−0.40), BMI (r=−0.39), weight (r=−0.41), and BDI-II (r=−0.54) at month 12 but not at month 6. The percentage of CushingQoL responders at month 12 based on month 6 mUFC control status were as follows: 63, 58.8, and 37.9% in the controlled, partially controlled, and uncontrolled groups respectively. Adjusted CushingQoL scores at month 12 were 58.3 for controlled patients (Δ=11.5 vs uncontrolled,P=0.012) and 54.5 for partially controlled patients (Δ=7.7 vs uncontrolled,P=0.170).ConclusionsPasireotide treatment can result in a meaningful HRQOL improvement among those who complete a 12-month treatment period, most often among patients achieving biochemical control.

Tuebingen CD-25 Is a Sensitive Tool to Investigate Health-Related Quality of Life in Cushing's Disease Patients in the Course of the Disease

2013 ◽  
Vol 98 (3) ◽  
pp. 188-199 ◽  
Author(s):  
Monika Milian ◽  
Juergen Honegger ◽  
Philipp Teufel ◽  
Alena Wolf ◽  
Tsambika Psaras
Keyword(s):  
Quality Of Life ◽  
Cushing’S Disease ◽  
Cushing's Disease ◽  
Health Related Quality ◽  
Sensitive Tool ◽  
Related Quality ◽  
Health Related

scholarly journals Validation of the Tuebingen CD-25 Inventory as a Measure of Postoperative Health-Related Quality of Life in Patients Treated for Cushing's Disease

2015 ◽  
Vol 102 (1-2) ◽  
pp. 60-67 ◽  
Author(s):  
Monika Milian ◽  
Ilonka Kreitschmann-Andermahr ◽  
Sonja Siegel ◽  
Bernadette Kleist ◽  
Dagmar Führer-Sakel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cushing’S Disease ◽  
Cushing's Disease ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Health-related Quality of Life in Patients After Treatment of Cushing’s Disease

2016 ◽  
Vol 124 (03) ◽  
pp. 187-191 ◽  
Author(s):  
S. Nader ◽  
T. Burkhardt ◽  
E. Vettorazzi ◽  
M. Milian ◽  
J. Aberle ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cushing’S Disease ◽  
Cushing's Disease ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Health-Related Quality of Life in Adrenocortical Carcinoma

Cancers ◽  
2019 ◽  
Vol 11 (10) ◽  
pp. 1500 ◽  
Author(s):  
Rebecca V. Steenaard ◽  
Laura A. Michon ◽  
Harm R. Haak
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Adrenocortical Carcinoma ◽  
Treatment Options ◽  
Clinical Aspects ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.

The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences

2016 ◽  
Vol 35 (1) ◽  
pp. 52-59 ◽  
Author(s):  
Kara B. Dassel ◽  
Rebecca Utz ◽  
Katherine Supiano ◽  
Nancy McGee ◽  
Seth Latimer
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Treatment Options ◽  
National Sample ◽  
Health Related Quality ◽  
Location Of Death ◽  
Related Quality ◽  
Health Related ◽  
Eol Care

Background: Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. Aim: The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). Design: General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. Setting/Participants: A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. Results: The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants’ multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. Conclusion: Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.

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