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Jitske Tiemensma, Sarah Depaoli and John M Felt

Context

Patients in long-term remission of Cushing's syndrome (CS) commonly report impaired quality of life (QoL). The CushingQoL questionnaire is a disease-specific QoL questionnaire for patients diagnosed with CS. The developers of the CushingQoL recommend using a global (total) score to assess QoL. However, the global score does not capture all aspects of QoL as outlined by the World Health Organization (WHO).

Objective

The aim of the study was to compare the performance of different scoring options to determine the optimal method for the CushingQoL.

Design and patients

Patients in remission from CS (n=341) were recruited from the Cushing's Syndrome Research Foundation's email listserv and Facebook page, and asked to complete the CushingQoL and a short demographics survey.

Results

Using an exploratory analysis, adequate model fit was obtained for the global score, as well as a 2-subscale (psychosocial issues and physical problems) scoring solution. Confirmatory methods were performed to identify the optimal scoring solution. Both the global score and the 2-subscale scoring solution showed adequate model fit. However, a χ 2 difference test indicated that the 2-subscale scoring solution was a significantly better fit than the global score (P<0.05).

Conclusion

If doctors or researchers would like to tease apart physical and psychosocial issues, the 2-subscale scoring solution would be recommended, since this solution showed to be optimal in scoring the CushingQoL. Regardless of the scoring solution used, the CushingQoL has proven to be a valuable resource for assessing health-related QoL in patients with CS.

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Jitske Tiemensma, Alberto M Pereira, Johannes A Romijn, Elizabeth Broadbent, Nienke R Biermasz and Adrian A Kaptein

Context and objective

Patients with acromegaly have persistent complaints despite long-term biochemical control. Drawings can be used to assess patients' perceptions about their disease. We aimed to explore the utility of the drawing test and its relation to illness perceptions and quality of life (QoL) in patients after long-term remission of acromegaly.

Design

A cross-sectional study was conducted to evaluate the utility of the drawing test.

Methods

A total of 50 patients after long-term remission (mean±s.e.m., 16±1.2 years) of acromegaly were included in this study. Patients completed the drawing test (two retrospective drawings of their body perception before acromegaly and during the active phase of acromegaly, and one drawing on the current condition after long-term remission), Illness Perception Questionnaire-Revised, Physical Symptom Checklist, EuroQoL-5D, and AcroQoL.

Results

Patients perceived a dramatic change in body size during the active state of the disease compared with the healthy state before the awareness of acromegaly. Patients reported that their body did not completely return to the original proportions after long-term remission. In addition, larger drawings indicated more negative consequences (P<0.05), a higher score on emotional representations (P<0.05), and more perceived symptoms that were attributed to acromegaly (P<0.01). Larger drawings also indicated more impaired QoL, especially disease-specific QoL (all P<0.05).

Conclusion

There are strong correlations among the drawing test, illness perceptions, and QoL. The drawing test appears to be a novel and relatively easy tool to assess the perception of patients after long-term remission of acromegaly. The assessment of drawings may enable health care providers to appreciate the perceptions of patients with long-term remission of acromegaly, and enable discussion of symptoms and remission.

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John M Felt Jr, Sarah A Depaoli, Alberto M Pereira, Nienke R Biermasz and Jitske Tiemensma

Context

Impaired quality of life (QoL) is common in patients after long-term remission of acromegaly. The acromegaly QoL (AcroQoL) is a disease-specific QoL questionnaire for patients diagnosed with acromegaly. The summed total score is the most frequently used scoring method of the AcroQoL. However, the total score does not capture all of the aspects of QoL that are outlined by the World Health Organization (WHO).

Objective

The aim of the present study was to use novel and sophisticated confirmatory methods to identify the optimal number of subscales for the AcroQoL.

Design and patients

Patients in remission from acromegaly were recruited from the Leiden University Medical Center and were asked to complete the AcroQoL (Dutch version) questionnaire (n=72).

Results

The three-subscale version of the AcroQoL consisted of subscales reflecting Physical Complaints, Appearance Issues, and Personal Relations Issues related to QoL. Model fit indices (i.e., comparative fit index and root mean square error of approximation) indicated that the three-subscale version represented the data better than the total score and two-subscale models did. A χ 2 difference test indicated that the three-subscale model was a significantly better fit than the total score and two-subscale models were (P<0.05).

Conclusion

Model fit and comparison statistics indicate that the three-subscale model is a better scoring method than the total score and two-subscale versions of the AcroQoL are. The three-subscale version also better reflected the WHO's recommendation of using a multidimensional measure of QoL than the total score and two-subscale methods did. Therefore, it is recommended that values from the three-subscales of the AcroQoL be reported in future research.

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Jitske Tiemensma, Adrian A Kaptein, Alberto M Pereira, Johannes W A Smit, Johannes A Romijn and Nienke R Biermasz

Objective

Illness perceptions pertain to the pattern of beliefs patients develop about their illness. Illness perceptions are determinants of quality of life (QoL). Factors contributing to persisting impaired QoL after Cushing's syndrome (CS) remain largely unknown. Therefore, the objective of this study was to explore illness perceptions, as potentially modifiable psychological factors, in relation to QoL in patients with long-term remission of CS.

Design

Cross-sectional study.

Methods

We included patients with long-term remission of CS (n=52). Illness perceptions were evaluated using the Illness Perception Questionnaire (IPQ)-Revised, and QoL was measured using the physical symptom checklist, EuroQoL-5D (EQ-5D), and the CushingQoL. Reference data were derived from recent studies and included patients with vestibular schwannoma (n=80), acute (n=35) or chronic (n=63) pain, and chronic obstructive pulmonary disease (COPD; n=171).

Results

Illness perceptions showed a strong correlation with QoL. Patients with CS scored distinctively more negative on the IPQ compared with patients with vestibular schwannoma and patients with acute pain, and also reported more illness-related complaints (all P<0.01). There were also some differences in illness perceptions between patients with CS and patients with chronic pain and patients with COPD, but there was no distinct pattern.

Conclusions

Patients after long-term remission of CS report more negative illness perceptions compared with patients with other acute or chronic conditions. Further research is needed to assess whether QoL in CS can be improved by addressing these illness perceptions, for example, by a self-management intervention program.

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Syed Ali Imran, Jitske Tiemensma, Stephanie M Kaiser, Michael Vallis, Steve Doucette, Ebad Abidi, Churn-Ern Yip, Barna De Tugwell, Ferhan Siddiqi and David B Clarke

Objective: Acromegaly is frequently associated with altered facial appearance at the time of diagnosis. Furthermore, acromegaly is also associated with adverse psychological outcomes. We conducted a single-centre, cross-sectional study comparing patients with growth hormone vs non-functioning pituitary adenomas (NFA) to assess the association between morphometric changes and psychological outcomes and illness perception of patients with acromegaly. Methods: A seven-step scale was developed to grade morphometric changes based on facial photographs. In addition, all patients were asked to draw an image of their own body and an image of what they considered to be an average healthy body and complete seven psychological questionnaires. We recruited 55 consecutive patients in each of the two groups who had undergone surgery with or without radiation therapy (RT). Results: Our data showed that the clinician-rated morphometric scale was highly reliable in assessing facial changes, with 93/99 (Intraclass correlation coefficient (ICC)=0.95 (0.93–0.97)) graded as similar by independent raters. The mean (s.d.) grading for Acro and NFA patients on the clinician-rated morphometric scale were 3.5 (1.3) and 0.41 (0.35) respectively (P<0.0001). A higher clinician-rated morphometric score was also predictive of a poorer score on the drawing test. Conclusions: Our study demonstrates a correlation between physical changes associated with acromegaly and poor psychological outcomes, whereas no such correlation existed with modes of therapy, disease control status, RT, malignancy, initial or recent GH/IGF1 or secondary hormonal deficiency. Our data support the utility of the morphometric scale as a clinical tool for grading facial changes.

Free access

Jitske Tiemensma, Cornelie D Andela, Ad A Kaptein, Johannes A Romijn, Roos C van der Mast, Nienke R Biermasz and Alberto M Pereira

Context

A high prevalence of psychological morbidity and maladaptive personality as well as impaired quality of life (QoL) is observed in patients with and without hydrocortisone dependency following (cured) Cushing's syndrome. However, it is currently unclear whether a similar pattern is present in patients with chronic glucocorticoid replacement for primary adrenal insufficiency (PAI).

Objective

To evaluate psychological functioning, personality traits, and QoL in patients with PAI.

Design and subjects

A cross-sectional study including 54 patients with stable treatment for PAI and 54 healthy matched controls. Both patients and controls completed questionnaires on psychological functioning (Apathy Scale, Irritability Scale, Mood and Anxiety Symptoms Questionnaire short form, and Hospital Anxiety and Depression Scale), personality traits (Dimensional Assessment of Personality Pathology short form), and QoL (Multidimensional Fatigue Inventory, Short Form 36, EuroQoL-5D, Nottingham Health Profile, and Physical Symptom Checklist).

Results

Patients with PAI suffered from more psychological morbidity (i.e. irritability and somatic arousal) and QoL impairments compared with controls (all P<0.01). There were no differences regarding maladaptive personality traits between patients and controls. However, there was a strong and consistent positive association between the daily hydrocortisone dose and prevalence of maladaptive personality traits (i.e. identity problems, cognitive distortion, compulsivity, restricted expression, callousness, oppositionality, rejection, conduct problems, social avoidance, narcissism, and insecure attachment, all P<0.05). There was also a strong relation between the mean daily hydrocortisone dose and both psychological morbidity (i.e. depression, P<0.05) and QoL impairments (i.e. general health perception, several measures of physical functioning, and vitality, all P<0.05).

Conclusion

Patients on stable glucocorticoid replacement therapy for PAI report psychological morbidity and impaired QoL. Psychological morbidity, impaired QoL, and maladaptive personality traits were all associated with higher dosages of hydrocortisone.

Free access

Cornelie D Andela, Han Repping-Wuts, Nike M M L Stikkelbroeck, Mathilde C Pronk, Jitske Tiemensma, Ad R Hermus, Adrian A Kaptein, Alberto M Pereira, Noelle G A Kamminga and Nienke R Biermasz

Context

Patients with pituitary disease report impairments in Quality of Life (QoL) despite optimal biomedical care. Until now, the effects of a self-management intervention (SMI) addressing psychological and social issues for these patients and their partners have not been studied.

Objective

To examine the effects of a SMI i.e. Patient and Partner Education Programme for Pituitary disease (PPEP-Pituitary).

Design and subjects

A multicentre randomized controlled trial included 174 patients with pituitary disease, and 63 partners were allocated to either PPEP-Pituitary or a control group. PPEP-Pituitary included eight weekly sessions (90 min). Self-efficacy, bother and needs for support, illness perceptions, coping and QoL were assessed before the intervention (T0), directly after (T1) and after six months (T2). Mood was assessed before and after each session.

Results

Patients in PPEP-Pituitary reported improved mood after each session (except for session 1). In partners, mood only improved after the last three sessions. Patients reported higher self-efficacy at T1 (P = 0.016) which persisted up to T2 (P = 0.033), and less bother by mood problems directly after PPEP-Pituitary (P = 0.01), but more bother after six months (P = 0.001), although this increase was not different from baseline (P = 0.346). Partners in PPEP-Pituitary reported more vitality (P = 0.008) which persisted up to T2 (P = 0.034). At T2, partners also reported less anxiety and depressive symptoms (P ≤ 0.014).

Conclusion

This first study evaluating the effects of a SMI targeting psychosocial issues in patients with pituitary disease and their partners demonstrated promising positive results. Future research should focus on the refinement and implementation of this SMI into clinical practice.

Free access

Cornelie D Andela, Steven J A van der Werff, J Nienke Pannekoek, Susan M van den Berg, Onno C Meijer, Mark A van Buchem, Serge A R B Rombouts, Roos C van der Mast, Johannes A Romijn, Jitske Tiemensma, Nienke R Biermasz, Nic J A van der Wee and Alberto M Pereira

Objective

Patients with long-term remission of Cushing's disease (CD) have persistent psychological and cognitive impairments. It is unknown whether, and to what extent, these impairments are accompanied by structural abnormalities in the brain. We aim to investigate structural changes in the brain in patients with predominantly long-term remission of CD and to examine whether these changes are associated with psychological and cognitive dysfunction and clinical severity.

Design

A cross-sectional, case–control study.

Methods

In 25 patients with predominantly long-term remission of CD and 25 matched healthy controls, grey matter volumes in the regions of interest (hippocampus, amygdala, and anterior cingulate cortex (ACC)) and in the whole brain were examined, using 3T magnetic resonance imaging and a voxel-based morphometry approach. Psychological and cognitive functioning were assessed using validated questionnaires and clinical severity was assessed using the Cushing's syndrome severity index.

Results

Compared with controls, patients had smaller grey matter volumes of areas in the ACC (on average 14%, P<0.05) and greater volume of the left posterior lobe of the cerebellum (on average 34%, P<0.05). As expected, patients with remitted CD reported more depressive symptoms (P=0.005), more anxiety (P=0.003), more social phobia (P=0.034), more apathy (P=0.002), and more cognitive failure (P=0.023) compared with controls, but the differences in grey matter volumes were not associated with psychological or cognitive measures, nor with clinical severity.

Conclusion

Patients with predominantly long-term remission of CD showed specific structural brain abnormalities, in the presence of psychological dysfunction. Our data form a basis for future work aimed at elucidating the relation of the structural brain abnormalities and the sustained psychological deficits after long-term exposure to high cortisol levels.