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 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 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 Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration

2021 ◽  
Author(s):  
Caroline Nguyen ◽  
Elisabeth Celestin ◽  
Delphine Chambolle ◽  
Agnès Linglart ◽  
Martin Biosse Duplan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Oral Health ◽  
Care Pathway ◽  
Clinical Signs ◽  
Oral Health Care ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Background. X-linked hypophosphatemia (XLH) is a rare, hereditary, and lifelong phosphate wasting disorder characterized by rickets in childhood and impaired teeth mineralization. In the oral cavity, spontaneous abscesses can often occur without any clinical signs of alteration of the causal tooth. The objective of our study was to evaluate the oral care pathway and the oral health-related quality of life (OHRQoL) of patients followed in an expert oral medicine department located within a Parisian hospital and working in close collaboration with an endocrinology department expert in this pathology. Methods. This study employed a qualitative descriptive design including semi-structured interviews using guiding themes. Results. Twenty-one patients were included in the study. The topics brought up exceeded the initial objectives as the patients mostly addressed the alteration of their oral and general quality of life; a very chaotic oral health care pathway with oral health professionals not aware of their pathology; consequences on their social, professional, and school integration; access to care complicated by financial factors. Patients declared the importance of having a multidisciplinary team around them, including medical and dental professionals.Conclusions. The variety of manifestations in patients with XLH necessitates a high coordination of multidisciplinary patient care to optimize quality of life and reduce disease burden. Oral health care pathways are very chaotic for patients who have difficulty finding professionals with sufficient knowledge of the disease. OHRQoL is therefore diminished. This situation improves when patients enter a coordinated care network.

scholarly journals The translation and validation of the Arabic Version of the Polycystic Ovary Syndrome Health-Related Quality of Life Questionnaire (AR-PCOSQ)

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Sultan Alghadeer ◽  
Alhanouf Algarawi ◽  
Faten Abu-Rkybah ◽  
Mashael M. Alshebly ◽  
Yazed Alruthia
Keyword(s):  
Quality Of Life ◽  
Polycystic Ovarian Syndrome ◽  
Signs And Symptoms ◽  
Life Questionnaire ◽  
Arabic Version ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Ovarian Syndrome

Abstract Background Polycystic ovarian syndrome (PCOS) is a hormonal disorder that is prevalent in females of reproductive age with signs and symptoms that significantly reduce self-esteem and have a negative impact on their quality of life. The management of PCOS signs and symptoms should result in an improvement in the health-related quality of life (HRQoL) of patients. Polycystic ovarian syndrome questionnaire (PCOSQ) is a disease-specific scale. The PCOSQ has been translated into different languages and assessed in different populations. The validity and reliability of PCOSQ varied depending on the ethnicity and culture of the respondents. The objective of the study was to establish a valid and reliable version of the PCOSQ (AR-PCOSQ) in Arabic. Methods A cross-sectional study using the translated and validated AR-PCOSQ questionnaire was conducted by interviewing 117 women with PCOS. Results The mean age (years) and BMI (kg/m2) of subjects were 29.90 ± 6.33 and 27.21 ± 5.54, respectively. Most of the patients had ≥ 1-year long history of PCOS (73.5%) and a post-school degree (64.96%). The content validity index (CVI) for the AR-PCOSQ from 10 gynecologists was 0.9, indicating satisfactory validity content. The internal consistency for reliability confirmation measured by Cronbach’s alpha coefficient was applied. Alpha coefficients for all items together was 0.863, indicating good reliability. The intraclass correlation coefficients for each item for 30 participants were also acceptable, ranging from 0.911 to 0.986 with p value < 0.001. As far as the factor analysis is concerned, the overall Kaiser–Meyer–Olkin sampling adequacy measure was 0.772. The Bartlett sphericity test was significant (p ≤ 0.001), Indicating that there were interrelated variables. Conclusion Our results demonstrated the initial reliability and validity of the Arabic version of the PCOSQ as a measure of specific HRQoL in Saudi women with PCOS. This will fill an important gap in measuring the HRQoL for patients with PCOS in research and community settings in Saudi Arabia. The AR-PCOSQ can be used to help prioritize health-related concerns from the patient’s perspective.

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