Dataset Information

A disease-specific Quality of Life questionnaire for primary aldosteronism.

ABSTRACT:

Objective

To develop a primary aldosteronism (PA) disease-specific Health-Related Quality of Life (HRQoL) questionnaire.

Methods

We included newly diagnosed patients with PA (n = 26), and patients with PA after adrenalectomy (n = 25) or treated with mineralocorticoid receptor antagonists (n = 25). According to the guidelines for developing HRQoL questionnaires from the European Organization for Research and Treatment of Cancer (EORTC): Phase I: systematic literature review followed by focus group meetings with patients (n = 13) resulting in a list of 94 HRQoL issues. Relevance of issues was rated by 18 other patients and by health care professionals (n = 15), resulting in 30 remaining issues. Phase II: selected issues were converted into questions. Phase III: the provisional questionnaire was pre-tested by a third group of patients (n = 45) who also completed the EORTC core Quality of Life questionnaire (QLQ-C30). Psychometric testing resulted in a final selection of questions with their scale structure.

Results

After the collection and selection of HRQoL issues a provisional questionnaire consisting of 30 items was formed. Of these items, 26 could be assigned to one of the four scales 'physical and mental fatigue', 'anxiety and stress', 'fluid balance' and 'other complaints' cumulatively accounting for 68% of variation in all items. All scales had good reliability and validity. There was a significant correlation of all four scales with the QLQ-C30 in most cases.

Conclusions

We developed the first PA-specific HRQoL questionnaire (PA-QoL) using standard, methodologically proven guidelines. After completion of the final validation (phase IV, international field testing), the questionnaire can be implemented into clinical practice.

SUBMITTER: Velema MS

PROVIDER: S-EPMC6454297 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Publications

A disease-specific Quality of Life questionnaire for primary aldosteronism.

Velema Marieke Stientje MS de Nooijer Aline A Hermus Ad R M M ARMM Timmers Henri J L M HJLM Lenders Jacques W M JWM Husson Olga O Deinum Jaap J

Endocrine connections 20190401 4

<h4>Objective</h4>To develop a primary aldosteronism (PA) disease-specific Health-Related Quality of Life (HRQoL) questionnaire.<h4>Methods</h4>We included newly diagnosed patients with PA (n = 26), and patients with PA after adrenalectomy (n = 25) or treated with mineralocorticoid receptor antagonists (n = 25). According to the guidelines for developing HRQoL questionnaires from the European Organization for Research and Treatment of Cancer (EORTC): Phase I: systematic literature review followe ...[more]

PMID: 30865926

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Project description:ObjectiveThe Menopause-Specific Quality-of-Life (MENQOL) questionnaire was developed as a specific tool to measure the health-related quality-of-life of postmenopausal women. Thus far, the Chinese version questionnaire has not been subjected to psychometric assessment with a large sample. This study aims to evaluate the validity and reliability of the Chinese version of the MENQOL specific to postmenopausal women in China.MethodsA total of 1,137 menopausal symptomatic and 491 menopausal asymptomatic women from eight cities in China were recruited using a convenience sampling method. Psychometric properties were evaluated by descriptive statistics, validity, and reliability. Reliability was assessed for each subscale of the MENQOL through internal consistency reliability with Cronbach's ? and intersubscale correlations. Item-domain correlations, principal components analysis (PCA), and confirmatory factor analysis were performed to determine construct validity. t tests were used to compare the differences between the menopausal symptomatic and asymptomatic women and to evaluate the discriminate validity. Pearson correlation coefficients were calculated between MENQOL scores and the Kupperman index to assess criterion-related validity.ResultsThe most common symptoms in Chinese menopausal symptomatic women were "experiencing poor memory" (94.4%), "feeling tired or worn out" (93.8%), "aching in muscle and joints" (89.4%), "low backache" (86.9%), "decrease in physical strength" (86.6%), "aches in back of neck or head" (86.2%), "difficulty sleeping" (83.6%), "accomplishing less than I used to" (83.4%), "feeling a lack of energy" (83.3%), "change in your sexual desire" (81%), and "hot flash" (80.7%) among others. The symptoms of "increased facial hair" were rarely seen (9.9%). The vasomotor domain, as well as psychosocial, physical, and sexual domains showed high reliability (Cronbach's ? 0.84, 0.87, 0.89, and 0.86, respectively). Item-domain correlation analysis showed that all items correlated more strongly with their own domains than with other domains. In the PCA, after deleting the "increased facial hair" item, items in the vasomotor, sexual, and psychosocial subscales loaded on their respective domains by and large, and items in the physical subscale divided into two factors. The PCA revealed a latent structure of the Chinese version of MENQOL nearly identical to the original MENQOL domains. The confirmatory factor analysis demonstrated that the questionnaire fits well with a four-domain model. The MENQOL can discriminate between menopausal symptomatic women with asymptomatic women as it showed good discriminate validity. Criterion-related validity was confirmed by a significant correlation between MENQOL scores and the Kupperman index.ConclusionsThis study showed that Chinese version of MENQOL has good psychometric properties and would be suitable to measure the health-related quality-of-life of Chinese menopausal women except for item 21 (increased facial hair).

Dataset Information

A disease-specific Quality of Life questionnaire for primary aldosteronism.

Objective

Methods

Results

Conclusions

Publications

A disease-specific Quality of Life questionnaire for primary aldosteronism.

Similar Datasets

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