Interpretation Guides to Standardized Questionnaires
Employed in the ALS CARE Database, including the:

• Short Form-12 Health Survey (SF-12)
• ALS Functional Rating Scale (ALSFRS and ALSFRS-R)
• ALS Assessment Questionnaire (ALSAQ-5) and
• Caregiver Burden Scale

Interpretation Guides | Patient Questions | Helpful Hints

1. The SF-12 Health Survey - PCS and MCS Scores

The Short Form-12 Health Survey measures generic health concepts relevant across age, disease, and treatment groups. It provides a comprehensive, psychometrically sound, and efficient way to measure health from the patient's point of view by scoring standardized responses to standard questions. The SF-12 (questions #32-38 on the Patient Form) is designed for self-administration, reducing the burden of data collection for health care providers. Most patients can complete the SF-12 in less than 3 minutes without assistance.

Try out the SF-12

The SF-12 was designed to measure general health status from the patient's point of view. The SF-12 includes 8 concepts commonly represented in health surveys: physical functioning, role functioning physical, bodily pain, general health, vitality, social functioning, role functioning emotional, and mental health. Results are expressed in terms of two meta-scores: the Physical Component Summary (PCS) and the Mental Component Summary (MCS).

The SF-12 is scored so that a high score indicates better physical functioning. To calculate the PCS and MCS scores, test items are scored and normalized in a complex algorithm that generally requires a computer. The PCS and MCS scores have a range of 0 to 100 and were designed to have a mean score of 50 and a standard deviation of 10 in a representative sample of the US population. Thus, scores greater than 50 represent above average health status. On the other hand, people with a score of 40 function at a level lower than 84% of the population (one standard deviation) and people with a score less than 30 function at a level lower than approximately 98% of the population (two standard deviations).

The ability to compare ALS patients with healthy individuals as well as with patients with other diseases is a unique strength of the SF-12.

2. The ALS Functional Rating Scale (ALSFRS)

Try out the new online ALS Functional Rating Scale

The ALSFRS provides a physician-generated estimate of the patient’s degree of functional impairment, which can be evaluated serially to objectively assess any response to treatment or progression of disease. The ALSFRS includes ten questions (question #16 a-j on the OLD Health Professional Form) that ask the physician to rate his/her impression of the patients level of functional impairment in performing one of ten common tasks, e.g. climbing stairs. Each task is rated on a five-point scale from 0 = can't do, to 4 = normal ability. Individual item scores are summed to produce a reported score of between 0=worst and 40=best.

In the new CRF’s the ALSFRS has been revised and is now called the ALSFRS-R. The ALSFRS-R includes 12 questions (question # 14: 1-12 on the NEW Health Professional Form). Each task is rated on a five-point scale from 0 = can't do, to 4 = normal ability. Individual item scores are summed to produce a reported score of between 0=worst and 48=best.

3. The ALS Assessment Questionnaire (ALSAQ-5 Score)

The Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ) was designed to measure subjective health status in the ALS/MND patients. The ALSAQ-5 is the shorter version the original ALSAQ-40 Scale. This scale measures both impairment and disabilities. The scale provides scores for physical mobility, activities of daily life, eating and drinking abilities, communication and emotional functioning. The ALSAQ-5 consists of 5 questions (questions 56a-e on the Patient Form) that are answered by the patient. Each question is followed by 5 responses, 0=Never to 4=Always or cannot do at all. These items are scored and standardized in a complex algorithm that generally requires a computer. The ALSAQ-5 summary scores are reported in a range from 0=best and 100=worst.

4. The CareGiver Burden Scale (CGBS)

The CareGiver Burden Scale was developed to measure the relative burden of caring for individuals with a wide variety of chronic illnesses. The CGBS consists of 17 questions (question # 21 a-q on the Care Giver Form) that are answered by the patient's primary care giver. For example, has assisting the patient increased your anxiety about things? Each question is followed by five responses from 1=not at all to 5=a great deal. These scores are then summed and standardized to produce a reported Care Giver Burden Score of between 0 = worst and 100 = best.