Using subscales when scoring the Cushing's quality of life questionnaire

Tiemensma, Jitske; Depaoli, Sarah; Felt, John M.

doi:10.1530/eje-15-0640

Cited by 19 publications

(40 citation statements)

References 22 publications

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“…Recently however two subscales (psychosocial issues and physical problems) were identified, which showed adequate model fit. Data were obtained from patients in remission from CS (n = 341) recruited from the Cushing's Syndrome Research Foundation's email lists; they completed the CushingQoL questionnaire and a short demographics survey (54). Regardless of the scoring solution used, it was concluded that CushingQoL had proven to be a valuable resource for assessing healthrelated QoL in patients with CS.…”

Section: Cushing's Diseasementioning

confidence: 99%

MANAGEMENT OF ENDOCRINE DISEASE: Quality of life tools for the management of pituitary disease

Webb

Crespo

Santos

et al. 2017

European Journal of Endocrinology

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Background: In the last few years, quality of life (QoL) has become an outcome measure in patients with pituitary diseases. Objective: To describe the available data on QoL impairment evaluated with questionnaires in patients with pituitary diseases. Design: Critical review of the pertinent literature and pragmatic discussion of available information. Methods: Selection of relevant literature from PubMed and WOK, especially from the last 5 years and comprehensive analysis. Results: QoL is impaired in all pituitary diseases, mostly in acromegaly and Cushing's disease (similar to other causes of Cushing's syndrome), but also in non-functioning pituitary adenomas and prolactinomas, especially in the active phase of the disease. Nevertheless, even after endocrine 'cure', scores tend to be below normative values, indicative of residual morbidity after hormonal control. The presence of hypopituitarism worsens subjective QoL perception, which can improve after optimal substitution therapy, including recombinant human growth hormone, when indicated. Conclusions: To improve the long-term outcome of pituitary patients, helping them to attain the best possible health, it appears desirable to include subjective aspects captured when evaluating QoL, so that the affected dimensions are identified and if relevant treated. Additionally, being aware that treatment outcome may not always mean complete normalisation of physical and mental issues related to QoL can be a first step to adaptation and conforming to this new status.

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Section: Cushing's Diseasementioning

confidence: 99%

MANAGEMENT OF ENDOCRINE DISEASE: Quality of life tools for the management of pituitary disease

Webb

Crespo

Santos

et al. 2017

European Journal of Endocrinology

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“…Patients in the present study were recruited by Tiemensma et al (2016), who examined different scoring options of the CushingQoL. A short message with a web link to the online survey was distributed to patients treated for CS through the Cushing's Support and Research Foundation's (CSRF) listserv and Facebook page.…”

Section: Methodsmentioning

confidence: 99%

“…Items are measured on a 5-point Likert-type scale assessing how often (Always to Never) or how much (Very Much to Not at All) each item has been related to the patient's CS in the previous 4 weeks. The CushingQoL provides insight into physical problems and psychosocial issues (Webb et al, 2008; Tiemensma et al, 2016). Scores for each of the subscales of the CushingQoL are summed and transformed to range from 0 (worst possible QoL) to 100 (best possible QoL).…”

Section: Methodsmentioning

confidence: 99%

“…For this study, the multidimensional generalization of the GRM was used to evaluate a two-subscale (simple-structure) scoring solution of the CushingQoL. The factor structure was determined from a previous investigation of the CushingQoL dimensionality and scoring options (Tiemensma et al, 2016). This model characterizes item functioning by using two different types of parameters for each item; namely, the item discrimination and item difficulty parameters.…”

Section: Methodsmentioning

confidence: 99%

“…The single total score of the CushingQoL has demonstrated good construct validity (Santos et al, 2012; Badia et al, 2013; Roset et al, 2013), test–retest reliability (Nelson et al, 2013), and internal consistency (Santos et al, 2012). Recent research indicates the CushingQoL better represents patients QoL concerns when scored with two subscales: psychosocial issues and physical problems (Tiemensma et al, 2016). In addition to implementing this new scoring system, there are subsequent issues to explore linked to how well individual patients are represented by this scoring solution.…”

Section: Introductionmentioning

confidence: 99%

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Using Person Fit Statistics to Detect Outliers in Survey Research

et al. 2017

Self Cite

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Context: When working with health-related questionnaires, outlier detection is important. However, traditional methods of outlier detection (e.g., boxplots) can miss participants with “atypical” responses to the questions that otherwise have similar total (subscale) scores. In addition to detecting outliers, it can be of clinical importance to determine the reason for the outlier status or “atypical” response.Objective: The aim of the current study was to illustrate how to derive person fit statistics for outlier detection through a statistical method examining person fit with a health-based questionnaire.Design and Participants: Patients treated for Cushing's syndrome (n = 394) were recruited from the Cushing's Support and Research Foundation's (CSRF) listserv and Facebook page.Main Outcome Measure: Patients were directed to an online survey containing the CushingQoL (English version). A two-dimensional graded response model was estimated, and person fit statistics were generated using the Zh statistic.Results: Conventional outlier detections methods revealed no outliers reflecting extreme scores on the subscales of the CushingQoL. However, person fit statistics identified 18 patients with “atypical” response patterns, which would have been otherwise missed (Zh > |±2.00|).Conclusion: While the conventional methods of outlier detection indicated no outliers, person fit statistics identified several patients with “atypical” response patterns who otherwise appeared average. Person fit statistics allow researchers to delve further into the underlying problems experienced by these “atypical” patients treated for Cushing's syndrome. Annotated code is provided to aid other researchers in using this method.

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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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Using subscales when scoring the Cushing's quality of life questionnaire

Cited by 19 publications

References 22 publications

MANAGEMENT OF ENDOCRINE DISEASE: Quality of life tools for the management of pituitary disease

MANAGEMENT OF ENDOCRINE DISEASE: Quality of life tools for the management of pituitary disease

Using Person Fit Statistics to Detect Outliers in Survey Research

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

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