Stress and Vision Fluctuations in Retinitis Pigmentosa

NCT00475254 | Completed

• 1 other identifier: K23EY018356
• Study Type: observational
• Target: 50
• Locations: 1 country
• Sites: 1

Brief Summary

Retinitis pigmentosa (RP) patients experience a slowly progressive, unpredictable loss of vision which eventually leads to bare or no light perception, posing a continuous threat to patients' independence. Negative psychological states such as distress, sleepiness, anxiety and depression are common in RP patients due to the nature of this chronic, disabling disease. Psychophysical vision measures are more variable in legally blind RP subjects than in normally sighted individuals, and RP patients indicate that variations in vision are often related to stress. The primary goal of this research is to examine the vision fluctuations within and between days among RP patients using vision tests self-administered by patients through their home computers, and determine associations with factors such as perceived stress, mood states, sleepiness, or light exposure. The administration of questionnaires will allow us to gain some insight into which underlying psychological factors impact certain vision measures, allowing the design of future interventional research to attempt to reduce such factors. The aims of many future treatment clinical trials for RP will be to improve vision and/or reduce the rate of vision loss; thus the sources that lead to increased variability of vision need to be identified and alleviated to enable precise evaluation of interventions and improve patients' quality of life.

Conditions

Retinitis Pigmentosa

Keywords

Retinitis Pigmentosa; stress; sleepiness; low vision; mind-body

Outcome Measures

Primary Outcomes (1)

• Vision test reliability across multiple test administrations in relation to psychological and external factors

  2-3 months

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Individuals with a confirmed diagnosis of retinitis pigmentosa

You may qualify if:

• Patients with diagnosed retinitis pigmentosa

You may not qualify if:

• Very severe vision loss (i.e., light perception only) who may have difficulty performing the vision tests with their home computers
• Unable to use a PC (Personal Computer)
• Non-English speaking
• Unable to communicate experiences
• Out of town for more than one week during a 2 month period when taking the PC-based tests

Sponsors & Collaborators

• Johns Hopkins University: lead
• National Institute of Nursing Research (NINR): collaborator
• National Eye Institute (NEI): collaborator

Study Sites (1)

Johns Hopkins WiImer Eye Insitute's Lions Vision Center

Baltimore, Maryland, 21205, United States

Location

Related Links

• Johns Hopkins Center for Mind-Body Research

MeSH Terms

Conditions

Retinitis Pigmentosa; Sleepiness; Vision, Low

Condition Hierarchy (Ancestors)

Eye Diseases, Hereditary; Eye Diseases; Retinal Dystrophies; Retinal Degeneration; Retinal Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Vision Disorders; Sensation Disorders; Neurologic Manifestations; Nervous System Diseases

Study Officials

• Ava K. Bittner, O.D., Ph.D.

  Johns Hopkins Wilmer Eye Institute

  PRINCIPAL INVESTIGATOR

• Maureen George, Ph.D.

  Johns Hopkins School of Nursing

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER

Study Record Dates

• First Submitted: May 16, 2007
• First Posted: May 21, 2007
• Study Start: August 1, 2007
• Primary Completion: April 1, 2011
• Study Completion: April 1, 2011
• Last Updated: April 6, 2011

Record last verified: 2008-08

Locations

US (1)