Multiple Abnormalities Clinical Trial
Official title:
The Experience of Uncertainty in Parents of Children With an Undiagnosed Medical Condition
| Verified date | April 10, 2012 |
| Source | National Institutes of Health Clinical Center (CC) |
| Contact | n/a |
| Is FDA regulated | No |
| Health authority | |
| Study type | Observational |
Background:
- Rare and undiagnosed conditions are often chronic and disabling, with symptoms affecting
different organ systems at various levels of severity. Perhaps the most challenging
feature of an undiagnosed medical condition that has lasted 2 or more years is its
characteristic uncertainty. In the absence of a diagnosis, health care professionals can
provide only limited treatment and prognostic information.
- In the case of a child with an undiagnosed condition, the uncertainty that accompanies
what is often a chronic, debilitating medical condition and an undefined prognosis may
have physical, psychological, social, and spiritual implications for the entire family.
Research suggests that parents of a child with an undiagnosed medical condition may be
at significantly increased risk of anxiety, depression, poor health, and overall lower
quality of life.
- It is not well understood how individuals cope with and adapt to chronic uncertainty,
and the factors that influence this process. To design future interventions, descriptive
studies are needed to reveal predictors that can be manipulated to improve outcomes.
Objectives:
- To examine whether perceptions of uncertainty, and perceived personal control, are
associated with coping and adaptation.
- To examine how the length of time elapsed since child was identified as sick and
perceptions of uncertainty affect coping and adaptation.
- To assess how perceptions of uncertainty, time elapsed since child became sick,
optimism, and perceived personal control affect coping and adaptation.
Eligibility:
- Parents (older than 18 years of age) of children who have an undiagnosed medical
condition.
- Participants must have a working e-mail address or fixed postal address.
Design:
- Parents will be recruited from Web-based support networks for parents of undiagnosed
children through Web site postings, electronic mailing lists, and printed newsletter
postings.
- Participants will be asked to complete a questionnaire about their experiences in living
with a child who has an undiagnosed but chronic medical condition. The main outcome
variable is adaptation to living with one's child's undiagnosed medical condition.
- Participants have the option to complete an online or paper version of the
questionnaire. The questionnaire should take between 20 and 30 minutes to complete.
- No medical treatments are specifically offered as a part of this study.
| Status | Completed |
| Enrollment | 500 |
| Est. completion date | April 10, 2012 |
| Est. primary completion date | |
| Accepts healthy volunteers | No |
| Gender | All |
| Age group | 18 Years to 100 Years |
| Eligibility |
- INCLUSION CRITERIA: - Men and women 18 years or older - Biological or adoptive parent - At least one child of participants has a medical problem or problems that have remained undiagnosed for > 2 years - The child with an undiagnosed medical problem must reside with the parent - Read and write in English EXCLUSION CRITERIA: -One parent/household may participate |
| Country | Name | City | State |
|---|---|---|---|
| United States | National Human Genome Research Institute (NHGRI), 9000 Rockville Pike | Bethesda | Maryland |
| Lead Sponsor | Collaborator |
|---|---|
| National Human Genome Research Institute (NHGRI) |
United States,
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