Psychometric Evaluation of the IPPAQ in Pediatric Patients With Sickle Cell Disease Hospitalized With Vasoocclusive Pain

Historically, sickle cell disease has not been viewed in the chronic pain paradigm because of its recurrent nature. Patients with sickle cell disease may be hospitalized for extended periods of time. As the hospital stay progresses, patients with SCD pain are often observed by clinicians to have improvements in function in areas such as self-care, mobility, and recreation despite continued self-report of high pain scores. This pattern of functional improvement with continued report of high pain intensity scores is common in patients with recurrent and chronic pain. A functional assessment tool that can assess function in the acute inpatient setting is needed.

The purpose of this study is to evaluate the Inpatient Pediatric Physical Activity Questionnaire (IPPAQ), as a measure of daily function in children with sickle cell disease hospitalized with vasoocclusive pain.

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Key information

Conditions

Sickle Cell Disease Anemia Anemia, Hemolytic Anemia, Hemolytic, Congenital Anemia, Sickle Cell Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemoglobinopathies Neurologic Manifestations Pain Pathological Conditions, Signs and Symptoms Signs and Symptoms

Age range

7 year–21 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Connecticut Children's Medical Center

Hartford, Connecticut, 06106, United States

About this study

Refer to Brief Summary

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Documented sickle cell disease
Sudden onset of pain consistent with vasoocclusive episode at the time of hospitalization.
Pain requiring hospitalization and placement on standard clinical guideline for management of acute pain in sickle cell disease during hospitalization
Cognitive ability to report pain on a 0-10 Numerical Rating Scale (NRS)
Parental/patient consent and child assent

Exclusion criteria

Primary diagnosis other than vasoocclusive pain
Concurrent Acute Chest Syndrome (ACS)
Patient previously enrolled in this study
Inability to understand English

Treatment and study plan

Primary outcomes

IPPAQ

Time frame: 1 day

This is a functional assessment tool for pediatric sickle cell patients that is admisistered once a day.

Sponsors and collaborators

Lead sponsor

Connecticut Children's Medical Center

Other

Registry information

Official study title

Psychometric Evaluation of the Inpatient Pediatric Physical Activity Questionnaire (IPPAQ) in Pediatric Patients With Sickle Cell Disease Hospitalized With Vasoocclusive Pain

Important dates

Study start: 2010
Primary completion: 2012
Study completion: 2012
First posted: Jan 28, 2010
Registry last updated: Jul 30, 2013

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed