Remission Rates, Not Disease Origin, Drive Quality of Life Scores in Cushing’s Patients, Study Suggests

After adjusting for remission rates, patients with Cushing’s syndrome were found to have similar health-related quality of life (HRQoL) scores at long-term follow-up, regardless of whether the disease originated in the pituitary or adrenal gland, according to a recent study.

The study, “Worse Health‐Related Quality of Life at long‐term follow‐up in patients with Cushing’s disease than patients with cortisol producing adenoma. Data from the ERCUSYN,” was published in the journal Clinical Endocrinology.

Generally, the HRQoL of Cushing’s patients tends to improve after successful treatment. However, due to the persistence of several features associated with the disease — such as cardiovascular morbidity, muscle fatigue, bone fragility, and cognitive dysfunctions — the HRQoL does not completely normalize.

At diagnosis, the HRQoL of all Cushing’s syndrome patients — regardless of whether they have a pituitary (PIT-CS) or adrenal (ADR-CS) tumor  — is similar. However, data on HRQoL after remission is conflicting. While some reports indicate that PIT-CS, not ADR-CS, is associated with worse HRQoL scores even after remission compared with controls, others show no difference.

To study this disparity, researchers used data from the European Register on Cushing’s Syndrome — the largest prospective database on Cushing’s — to determine whether the HRQoL scores are different between PIT-CS and ADR-CS patients at different time points. HRQoL was measured using the generic questionnaire EuroQoL and the disease-specific questionnaire CushingQoL.

As expected, results indicated that at baseline, the HRQoL of patients with PIT-CS and ADR-CS did not differ significantly using either EuroQoL or CushingQoL. The total CushingQoL score in PIT‐CS patients was 41±18 and 44±20 for ADR-CS patients, which was not a statistically significant difference.

Results from long‐term follow‐up — defined as more than one year after treatment — indicated that patients with PIT-CS had significantly lower total CushingQoL scores than patients with ADR-CS.

However, after adjusting for baseline age, gender, remission status, duration of active disease, glucocorticoid dependency, and follow-up time, researchers discovered there was no association between the origin of Cushing’s (pituitary or adrenal) and HRQoL.

When looking at individual factors, remission in patients was associated with a significantly better total CushingQoL score, while depression and older age at diagnosis were associated with significantly worse total CushingQoL scores.

This suggests PIT-CS patients only had worse HRQoL because fewer patients achieved remission after surgery — 93%, compared with 100% in ADR-CS patients.

“Our results are in agreement with these previous findings, showing that the main factor influencing long-term HRQoL is the remission status, and not etiology [origin],” the investigators said.

“PIT‐CS patients had poorer HRQoL than ADR‐CS at long‐term follow‐up, despite similar baseline scoring. After adjusting for remission status, no inter‐etiology differences in HRQoL scoring were found,” they concluded.