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

Nader, Sergio; Burkhardt, Till; Vettorazzi, Eik; Milian, Monika; Aberle, Jens; Petersenn, S; Flitsch, Joerg

doi:10.1055/s-0035-1569340

Cited by 5 publications

(27 citation statements)

References 25 publications

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“…Different studies have described higher depression and anxiety levels in comparison with literature values, healthy controls and non-functioning adenomas, measured with different questionnaires, including HADS, BDI, BDI-II and or STAI (36,37,51,75,81,82). Increased age and male gender have been related to less anxiety levels in a cohort of patients treated by transsphenoidal surgery for CD (33).…”

Section: Effects Of Remission In Quality Of Lifementioning

confidence: 92%

“…Predictors for improvement in QoL after surgery were preoperative QoL impairment (meaning that patients with poorer QoL preoperatively were more likely to improve post surgery) and age (meaning that younger patients were more likely to improve post surgery) (29). Another study reported impairment in the 6 dimensions of Tuebingem 25-CD questionnaire in patients treated for CD (85% in remission after surgery) (75). In addition, women were more affected than men for the dimensions of eating behavior and cognition of the Tuebingem 25-CD questionnaire (40).…”

Section: Effects Of Remission In Quality Of Lifementioning

confidence: 99%

“…Patients in remission still have poorer QoL scores than healthy controls. Generic questionnaires have shown impairment in comparison to healthy population and normative values using different questionnaires, like the Nottingham Health Profile (36), WHOQoL-BREF (39) or both mental and physical summary scores of SF-36 (35,36,75). In addition, patients in long-term follow-up of CD show impaired physical functioning, measured with SF-36, when compared to patients with non-functioning adenomas (77).…”

Section: Effects Of Remission In Quality Of Lifementioning

confidence: 99%

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Quality of Life in Patients With Cushing's Disease

et al. 2019

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Cushing's disease (and by extension, Cushing's syndrome) is a rare disease due to a chronic cortisol excess, which usually has an important impact on quality of life (QoL). It can lead to numerous comorbidities that can interfere with daily life, as fatigability, myopathy, bone loss and fragility, increased cardiovascular risk, depression, and cognitive alterations. Of note, psychological alterations (including depression and anxiety) occur often, and are an important determinant of impaired quality QoL. QoL scores using different questionnaires are poorer in comparison to healthy controls, other pituitary adenomas and some chronic diseases. Even if some improvements can be observed after successful treatment, recovery does not seem to be complete, and comorbidities persist. This persistent QoL impairment has been found using both generic and disease-specific QoL questionnaires, and is also reported by the patients themselves, when asked directly. Multidisciplinary teams are essential to improve patients' well-being. Clinicians should take into account the whole scope of clinical problems and address the different comorbidites associated with the disease. Screening in the psychological sphere, with further intervention if necessary, can be helpful in the management of these patients. Interventions and programs have shown promising results, although there is a need for further development of new strategies for the benefit of these patients.

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Section: Effects Of Remission In Quality Of Lifementioning

confidence: 92%

Section: Effects Of Remission In Quality Of Lifementioning

confidence: 99%

Section: Effects Of Remission In Quality Of Lifementioning

confidence: 99%

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Quality of Life in Patients With Cushing's Disease

et al. 2019

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“…AcroQoL Acromegaly Quality of Life Questionnaire, IQR interquartile range, SMS( +) on somatostatin analogue treatment, SMS(−) not on somatostatin analogue treatment, ↓ significantly lower compared to acromegaly patients in remission; ↑ significantly higher compared to acromegaly patients in remission, no P-value reported, = tested and no significant difference compared to patients in remission a Patients received octreotide LAR every two weeks (dose not reported) b Psychological subscales c AcroQoL scores did not differ between refractory patients and patients in remission at 24 weeks d No significant difference between all refractory patients SMS (+) or SMS (−) and patients in remission. No subgroup analysis performed for SMS(+) and SMS(−) separately e Refractory patients scored significantly lower than healthy controls f Values estimated based on figure, absolute values were not presented g Patients received weekly intramuscular injections of octreotide LAR 20 mg. At 12 weeks a dose escalation to octreotide LAR 30 mg was permitted in case GH > 2.5 ug/L and/or IGF1 above upper limit of normal for age, but this was not obligatory Chin [47] Gu [44] Guo [38] Hua [46] Psaras [49] Trepp [48] Yamamoto [45] Guo [38] SF-12 Psaras [49] Alcalar [54] Nader [50] d Psaras [49] Vega-Beyhart [52] Ye [53]…”

Section: Disease-specific Hr-qolmentioning

confidence: 99%

“…49 [42][43][44][45][46][47][48][49][50][51][52] Role physical 23 [19][20][21][22][23][24][25][26][27][28][29][30] Bodily pain 65 [60][61][62][63][64][65][66][67][68][69][70] General health 28 [22][23][24][25][26][27][28][29][30][31][32][33][34] Social functioning 53 [50][51][52][53][54]…”

Section: Physical Functioningmentioning

confidence: 99%

Patient-reported outcomes in refractory hormone-producing pituitary adenomas: an unmet need

2023

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Purpose To describe quality and outcomes of patient-reported outcome (PRO) measures (PROMs) used in patients with refractory hormone-producing pituitary adenomas, and to provide an overview of PROs in these challenging pituitary adenomas. Methods Three databases were searched for studies reporting on refractory pituitary adenomas. For the purpose of this review, refractory adenomas were defined as tumors resistant to primary therapy. General risk of bias was assessed using a component approach and the quality of PROM reporting was assessed using the International Society for Quality of Life Research (ISOQOL) criteria. Results 20 studies reported on PROMs in refractory pituitary adenomas, using 14 different PROMs, of which 4 were disease specific (median general risk of bias score: 33.5% (range 6–50%) and ISOQOL score: 46% (range 29–62%)). SF-36/RAND-36 and AcroQoL were most frequently used. Health-related quality of life in refractory patients (measured by AcroQoL, SF-36/Rand-36, Tuebingen CD-25, and EQ-5D-5L) varied greatly across studies, and was not always impaired compared to patients in remission. Conclusion There is a scarcity of data on PROs in the subset of pituitary adenomas that is more difficult to treat, e.g., refractory and these patients are difficult to isolate from the total cohort. The patients' perspective on quality of life, therefore, remains largely unknown in refractory patients. Thus, PROs in refractory pituitary adenomas require adequate analysis using properly reported disease specific PROMs in large cohorts to enable appropriate interpretation for use in clinical practice.

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Holistic burden of illness in patients with endogenous Cushing's syndrome: A systematic literature review

Page‐Wilson,

Oak,

Silber

et al. 2023

Endocrino Diabet & Metabol

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ObjectiveThe objective of this systematic literature review (SLR) was to summarize the latest studies evaluating the burden of illness in endogenous Cushing's syndrome (CS), including the impact of CS on overall and domain‐specific health‐related quality of life (HRQoL) and the economic burden of CS to provide a holistic understanding of disease and treatment burden.MethodsAn SLR was conducted in PubMed, MEDLINE and Embase using the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) checklist to identify peer‐reviewed manuscripts and conference abstracts published in English from 2015 to December 4, 2020.ResultsForty‐five publications were eligible for inclusion; data were extracted from 37 primary studies while 8 SLRs were included for reference only. Thirty‐one studies reported HRQoL using validated patient reported outcome (PRO) measures in pre‐ or post‐surgery, radiotherapy and pharmacotherapy patients. Overall, this SLR found that patients with CS have worse outcomes relative to healthy populations across specific dimensions, such as depression, despite an improvement in HRQoL post‐treatment. These findings reveal that CS symptoms are not fully resolved by the existing care paradigm. Few studies report on the economic burden of CS and currently available data indicate a high direct healthcare system cost burden.ConclusionsPatients with CS experience a significant, complex and multifactorial HRQoL burden. Symptom‐specific burden studies are sparse in the literature and the understanding of long‐term CS symptomatic burden and economic burden is limited. This review intends to provide an updated reference for clinicians, payers and other stakeholders on the burden of CS as reported in published literature and to encourage further research in this area.

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

Cited by 5 publications

References 25 publications

Quality of Life in Patients With Cushing's Disease

Quality of Life in Patients With Cushing's Disease

Patient-reported outcomes in refractory hormone-producing pituitary adenomas: an unmet need

Holistic burden of illness in patients with endogenous Cushing's syndrome: A systematic literature review

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