Supporting patients’ ‘new normal’ with Cushing’s syndrome

Beyond the physical symptoms

Even when cortisol has been successfully controlled, symptoms may recur, therefore recovery may not be fully complete for patients. Patients can still experience significant symptoms, contributing to a negative impact on their social and physical quality of life (QoL).1,21

This is due to the persistence of comorbidities such as hypertension, diabetes, fatigue and depression, which can develop over time and present a further burden for patients.

Along with life-limiting symptoms, serious comorbidities significantly impact on patient QoL and in turn can lead to increased risk of mortality for Cushing’s patients.

Encouraging patients to take a proactive position in monitoring and managing their disease is a crucial treatment step, as well as conveying the necessity of tracking symptoms and maintaining an open dialogue, because the most burdensome symptoms can be predictors of future QoL.

Treating beyond cortisol control

Despite advances in understanding Cushing’s syndrome and the approval of various medical therapies, a substantial proportion of patients do not achieve or maintain normal 24-hour mUFC concentrations with most of the existing medical treatment options.28

Research has found that several symptoms and comorbidities seem to be a greater burden to patients than others, and that some can be indicators of poor health-related quality of life (HRQoL) and higher risk of mortality. For instance, a recent study reported that patients with Cushing’s experience symptoms such as:15

  • Depression (94%)
  • Loss of physical strength (93%),
  • Pain (83%),
  • Insomnia (63%)

Patients tend to consider fatigue, muscle weakness and weight gain as the symptoms that interfere with their QoL the most.1

Poor mental health and cognitive difficulties also contributes to greater risk of life-limiting comorbidities, as research has shown that depression increases mortality between 5 to 7-fold among Cushing’s Syndrome patients and is a strong predictor of cardiovascular complications.15,20

Open dialogue with patients is integral to providing holistic care. Supported by a multidisciplinary team, identifying the most burdensome symptoms is the first step to providing optimal care. Patients can also find strong support from their families and care teams, so encouraging them to share their experiences and speak candidly about their disease can go a long way to indirectly supporting a patient’s wellbeing.

Prof. Rosario Pivonello MD, PhD 
Endocrinology and Pituitary expert

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The importance of managing quality of life

Negative effects of hypercortisolism, including vascular, cardiac, and neuropsychiatric alterations, may persist for years despite biochemical remission.29

Indeed, while normalising cortisol levels always remains the key treatment goal, a concurrent goal should be to address these QoL impairments and seek to improve the patient’s mental and physical wellbeing.9 A recent study observed the high prevalence of persistent comorbidities following remission and differences in perceptions of health between patients and physician.1

The results showed that Cushing’s has damaging effects on the QoL of affected patients, although the extent may vary from one patient to another. 

In a patient-reported questionnaire, a total of 178 patients from 30 countries reported that Cushing’s syndrome affects the following aspects of their daily life:1

  • Work life (75%)
  • Social life (65.3%)
  • Family life (57.8%)
  • Interpersonal relationships (51.6%)
  • Sexual life (48.8%)
  • Economic situation (37%)

QoL is a widely recognized concept that has received growing interest by clinicians. Although many instruments exist to measure QoL, disease-specific questionnaires such as CushingQoL are often most helpful to assess the impact of the disease and develop an accurate plan for treatment to manage persistent comorbidities, including psychological aspects.14,30

Clinicians play an important role in helping patients to improve their QoL. Returning cortisol to within the normal range, reversing clinical features, and effectively managing comorbidities are key goals for patients with Cushing’s syndrome.9

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    'Decreasing cortisol levels may not be enough to restore a normal life, because some clinical manifestations might not be completely reduced. We must monitor these clinical manifestations, as well as cortisol levels.'

    Prof. Annamaria Colao MD, PhD

    Endocrinology and Pituitary expert

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