Disease-Specific Measures

Hemophilia Caregiver Impact Measure and translations © 2021 DeltaQuest Foundation (TXu 2-290-400)

This 36-item measure includes seven negative-impact subscales (Practical, Physical, Financial, Symptom, Lifestyle, Social, and Emotional) and one positive-impact subscale (Positive Emotions). It has documented reliability and cross-sectional and longitudinal validity, and has been used in observational research on hemophilia caregivers.

• Authorized translations for the Hemophilia Caregiver Impact Measure © are available in English (United States), French (France), German (Germany), Italian (Italy), Spanish (US,UK, Spain), and Swedish.

Duchenne Muscular Dystrophy Caregiver Impact Measure © 2021 DeltaQuest Foundation (TXu 2-288-631)

This 39-item measure includes seven negative-impact subscales (Practical, Physical, Financial, Symptom, Lifestyle, Social, and Emotional) and one positive-impact subscale (Positive Emotions). It has documented reliability and validity, and has been used in observational research on Duchenne Muscular Dystrophy caregivers.

Performance Scales-11 © 2015 DeltaQuest Foundation (TXu 1-990-493)

The Performance Scales-11 are categorical rating scales with subscales for mobility, hand function, vision, fatigue, cognitive, bladder/bowel, sensory, spasticity, pain, depression, and tremor & coordination disability. Higher scores reflect more disability. The measure has documented test-retest reliability, and criterion and discriminant validity.

Performance Scales © 1993 DeltaQuest Foundation (TXu000743629)

The Performance Scales are categorical rating scales used to measure outcomes for Multiple Sclerosis with subscales for mobility, hand function, vision, fatigue, cognitive, bladder/bowel, sensory, and spasticity disability. Higher scores reflect more disability. The impact on work productivity is assessed with separate items. The measure has documented test-retest reliability (r=0.80), and both criterion and discriminant validity. The Performance Scales have been widely used to measure and assess outcomes across a broad spectrum of studies, including international clinical trials, studies related to natural history, observational outcomes and epidemiological assessment, as well as in large registries of data collected from Multiple Sclerosis patients. With translations available in 18 language versions besides United States English, the measure is amenable as a clinical research tool in many contexts and countries.

Symptom Inventory: Short-Form © 1993 DeltaQuest Foundation (TXu000743627)

Symptom Inventory: Long-Form © 1993 DeltaQuest Foundation (TXu000743628)

Symptom Inventory Disability-Specific Short-Forms © 2010 DeltaQuest Foundation (TXu001822659)

The Symptom Inventory (SI) Disability-Specific Short Forms is a 10-scale symptom measure for use in MS clinical research. Building on the validated item bank of the 99-item SI item bank (TXu000743627), this measure was developed and validated using item-response-theory methods. The resulting measure has five short-forms for MS patients with mild, moderate and severe disability for the following symptom domains: Mobility, Fatigue, Vision, Cognition, and Sensory. There are 5 short forms for use across all levels of disability: Hand Function, Bowel and Bladder, Spasticity, Pain, and Vasomotor. Crosswalks are provided between the SI and other patient-reported outcome tools.

Quality of Care

Quality of Care in Multiple Sclerosis © 1996 DeltaQuest Foundation (TXu000743626)

The Quality of Care Survey is a self-report measure that assesses systems of medical care, quality of care, and cost of care. It measures the structure, process, and outcomes of care. It asks patients about the services they receive so that cost and quality of care can be estimated. The survey addresses alternative therapies, as well as issues related to insurance coverage, and out-of-pocket costs. It is designed to be filled out by the patient, but may be completed by care providers.