Generic PRO Questionnaires | Liver Disease Specific PROs

Short name SF36
Most widely used tool worldwide
8 domains measuring health and well being with 36 items
Specific domains include general health, vitality, role emotional, role physical, social well being, mental health and physical functioning
Two summary scales of physical composite and mental composite scores
Established population norms for comparison and is generic as well as disease specific.
Asks patients to recall how the patient is feeling over past 4 weeks
Can be self administered, questioned in person or by telephone interview
Takes 5-10 minutes to complete

Short name SIP/SIP-68
Investigates a change in the behavior as a consequence of an illness
Covers 12 categories of daily living sleep and rest, eating, work, home management, ambulation, mobility, body care and movement, social integration, alertness behavior, emotional behavior and communication
136 items/68 items
Items are scored on a numeric scale with higher scores reflecting greater dysfunction. An aggregate psychosocial score is derived from four categories and an aggregate physical score is derived from 3 categories
Measures general health
Paper and pencil administration takes 30-40 minutes for the full survey and 15-20 minutes for the SIP-68

Short name pLTQ
8 domains which include: Emotional Function, Worry, Medications, Physical Function, Healthcare, Graft Rejection Concern, Financial, Pain
32 items with the first 28 items scored on a scale of 1-7 and higher scores reflect better HQOL
Stable over time but a relatively new measurement
Disease Specific
Self administered

Short name LDQL SF
9 domains and measures symptoms of liver disease and the effects of liver disease. Shown to correlate highly with SF-36 scores, symptom severity, disability, days and global health
Translated into several languages to include Spanish and Korean
Disease Specific
Self administered

Short Name HQLQv2
Two part survey to assess functional health and well-being of patients with chronic hepatitis C, Includes the SF-36v2® Health Survey (36 questions) and 15 additional questions which measure generic health concepts relevant to assessing the impact of hepatitis (health distress, positive well-being) and disease-specific concepts (ex Hepatitis-specific functional limitations, hepatitis-specific distress)
51 items
Is available in a fixed form or interview (telephone/face-to-face) format.
Disease Specific
It can be administered in clinical settings, at home or in other locations.

Short name LDSI2.0
Measures symptom severity and symptom hindrance in the past week
18 items
Measures symptom severity and symptom hindrance in the past week. Considered an additive tool when researching HTQOL with the liver disease population. Responses are on a 5 point scale from “ not at all hindered “ to “ hindered a high extent “. Translated into several languages
Disease Specific
Self-administered

Measures that cover: General Fatigue, Physical, Fatigue, Mental Fatigue, Reduced Motivation and Reduced Anxiety
20 items use a 5 point Likert scale from 1-5 (yes that is true to no that is not true). Higher scores mean less fatigue
Valid and reliable tool
Generic for fatigue
Self report

Short name MFSI-SF
Assesses global, somatic, affective, cognitive, and behavioral manifestations of fatigue
30 items
Shorter version of the original 83 items – Multidimensional fatigue symptom inventory. Takes less time but maintains the integrity of original survey
Generic
Self report

Combines preference-weighted values for symptoms and functioning. Symptoms are assessed by questions that ask about the presence or absence of different symptoms (yes or no). Functioning is assessed by a series of questions designed to record functional limitations over the previous three days, within 3 separate domains (mobility, physical activity and social activity). The 4 domain scores are combined into a total score that provides a numerical point-in-time expression of well-being that ranges from 0 for death to 1 for asymptomatic optimum functioning.
3 pages -58 questions
Can be self- administered, used in a face to face interview, answered by proxy and administered online.
Generic
Self- administered ( see strengths and limitations)

Short name HUI
A generic multi-attribute preference based measure of health status and HRQoL
HU13 consists of 8 attributes/dimensions: vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain. Scores range from highly impaired to normal
Can be used in clinical studies, population based surveys, in the estimation of quality adjusted life years and economic analysis.
Generic
Self- administered then scored by investigator

Short name SF-6D
To calculate the true value of a treatment, the scores from the SF-36v2® or the SF-12v2® Health Surveys can be converted into a utility index, called the SF-6D, which considers not only how many years a medical intervention can add to a patient’s life, but also the quality of that life.
Get a better understanding of a patient’s real preference for a treatment. Helps select the best course of action for a patient. Compares 2 interventions based on Quality Adjusted Life Years (QALYs)and cost. Assesses the cost effectiveness of a medical product, procedure, or health and wellness program. Allocates health care resources most efficiently.
Generic for quality of years added. Used for the economic impact of a disease.
The SF form is self-administered then the investigator will convert the scores to a utility score.
More information on scoring

Short name EQ-5D
A standardized instrument for use as a measure of health outcome.
Measures 5 dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Each dimension has 3 levels: no problems, some problems, extreme problems. Incorporates a visual analog scale to obtain the respondent’s self-rated health on a vertical, visual analog scale where endpoints are labeled ‘Best imaginable health sate’ and ‘Worst imaginable health state.
Cognitively simple, taking only a few minutes to complete. Instructions to respondents are included in the questionnaire.
Generic
Self-completion by respondents and is ideally suited for use in postal surveys, in clinics and face-to-face interviews.