Treatment Outcomes for Patients With Cushing's Syndrome: a Prospective Data Collection Study

Summary

The purpose of this study is to follow participants with Cushing's syndrome during the course of their routine care and to form a data registry to study long term participant outcomes.

Eligibility

Age range

14+ years

Sex

All

Healthy volunteers

No

Interventions

• Other
  Cushing's QoL (Quality of Life Questionnaire)

  Cushing's QoL is a validated disease specific questionnaire consisting of 12 questions on a five-point Likert scale ranging from always to never. The total score ranges from 12 to 60, with a lower score indicating a greater negative impact on health related QoL. This is converted to a 0-100 scale, 0 indicating the worst and 100 indicating the best QoL

• Other
  Nottingham Health Profile (NHP)

  NHP is used in patients to assess general health and quality of life. This assessment consists of 38 yes/no questions that are subdivided into six scales assessing impairments: pain (eight items), energy level (three items), sleep (five items), emotional reactions (nine items), social isolation (five items) and physical mobility (eight items). A higher score indicates more impairment

• Other
  Hospital Anxiety and Depression Scale (HADS)

  HADS consists of 14 items pertaining to anxiety and depression, with each item measured on a four-point scale. Total scores for the anxiety and depression subscales range from 0 to 21. A higher score indicates greater symptomatology

• Other
  Perceived Stress Scale (PSS)

  The PSS predicts both objective biological markers of stress and increased risk of disease in patients with higher stress levels.

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