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Interdisciplinary Pituitary Disorders Centre of Excellence: Assessment of Patient Education Tools

18 Years
Not Enrolling
Pituitary Neoplasms, Prolactinoma, ACTH-Secreting Pituitary Adenoma, Gigantism, Growth Hormone-Secreting Pituitary Adenoma

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Trial Information

Interdisciplinary Pituitary Disorders Centre of Excellence: Assessment of Patient Education Tools

This study involves a formative evaluation of the health literacy resources that we have
already developed. We see approximately 60 new patients a year with pituitary disorders,
plus the follow-up patients: all of these patients will be offered the opportunity to
participate in the study. These materials include a website (containing videos,
illustrations and written materials) and plain language educational brochures. The
educational materials include information that patients will need throughout their
experience with a pituitary tumour, ranging from the signs and symptoms of tumours, to
long-term post-operative lifestyle changes. This evaluation will be a mixed-methods

Part A (Think aloud) will use "think-aloud" processes to evaluate the usefulness and ease of
use of a website that we have developed with patients and their families.

Part B (Resource assessment) will involve the use of questionnaires followed by
semi-structured interviews with patients and families before and after using the resources.

Inclusion Criteria:

- age equal to or greater than 18 years;

- capable of providing consent to participate on their own behalf;

- diagnosed with a pituitary disorder OR have a history of pituitary disorder AND a
current/former patient at St. Michael's Hospital, OR be a caretaker of someone with a
pituitary disorder;

- adequate written/verbal English skills.

Exclusion Criteria:

- Younger than 18 years;

- Unable to provide consent;

- Unable to communicate in written/verbal English, as all of the surveys and interviews
are administered in English

Type of Study:


Study Design:

Allocation: Randomized, Endpoint Classification: Efficacy Study, Intervention Model: Parallel Assignment, Masking: Single Blind (Outcomes Assessor), Primary Purpose: Supportive Care

Outcome Measure:

The level of knowledge that patients have of their condition before and after reviewing the materials provided, and ease of use of educational materials and user satisfaction

Outcome Time Frame:

1-2 yrs

Safety Issue:


Principal Investigator

Michael Cusimano, MD, PhD

Investigator Role:

Principal Investigator

Investigator Affiliation:

St. Michael's Hospital, Toronto


Canada: Ethics Review Committee

Study ID:

SMHAIF - 058



Start Date:

February 2013

Completion Date:

December 2014

Related Keywords:

  • Pituitary Neoplasms
  • Prolactinoma
  • ACTH-Secreting Pituitary Adenoma
  • Gigantism
  • Growth Hormone-Secreting Pituitary Adenoma
  • Adenoma
  • Neoplasms
  • Gigantism
  • Pituitary Neoplasms
  • Pituitary Diseases
  • Prolactinoma
  • Growth Hormone-Secreting Pituitary Adenoma
  • ACTH-Secreting Pituitary Adenoma