Home > About PROQOLID
- Background and Objectives
- Free-Access Level
- Members-Only Level
- How to Search for Instruments?
- General Policy
Background
The success of Quality of Life (QOL) and Patient Reported Outcome (PRO) studies depends a great deal on the choice of appropriate instruments. They must be selected according to the domains they measure and the populations and pathologies for which they are designed. Practical issues, such as the availability of different translations, copyrights, and access to instruments are also major criteria in the choice of instruments.
From these observations, the Quality of Life Instruments Database (QOLID) project was initiated by MAPI Research Institute to provide all those involved in healthcare evaluation with a comprehensive and unique source of information on PRO and QOL measures available through the Internet. In collaboration with Dr. Marcello Tamburini (Director, Unit of Psychology, National Cancer Institute, Milan, Italy), the developer of the QLMed.org web site, QOLID was launched at the beginning of 2002. It is currently managed by MAPI Research Trust and was renamed PROQOLID─short for “Patient-Reported Outcome and Quality of life Instruments Database”─in January 2005.
Objectives
Through the structured presentation of synthesized, reliable, and constantly updated data on PRO instruments, the PROQOLID database aims to:
- Provide an overview of existing PRO instruments
- Provide relevant and updated information on PRO instruments
- Facilitate access to the instruments and their developers
- Facilitate the choice of an appropriate PRO instrument
Free-Access Level
This level of the PROQOLID website is available to all visitors at no charge. For each instrument, it provides the following brief and descriptive information.
Author(s)
Authors are listed in alphabetic order.
Pathology
The term “pathology” refers to a large therapeutic area and can cover several diseases. On the other hand, the term “disease” refers to a specific, precisely defined condition. The PROQOLID list of pathologies/diseases is in accordance with an established classification system well-known to scientists (MeSH: Medical Subject Headings of the National Library of Medicine). However some conditions such as “menopause” have been added in relation to a pathology so that they can be searched through the advanced search engine.
| Bacterial infections and mycoses | Infections caused by bacteria and fungi, general, specified, or unspecified |
| Cardiovascular diseases | Pathological conditions involving the cardiovascular system including the heart, blood vessels, or the pericardium |
| Congenital, hereditary and neonatal diseases and abnormalities | Diseases existing at birth and often before birth, or that develop during the first month of life (infant or newborn diseases), regardless of causation. Of these diseases, those characterized by structural deformities are termed congenital abnormalities. |
| Digestive system diseases | Diseases in any part of the gastrointestinal tract or the accessory organs (e.g., liver, biliary tract, pancreas) |
| Disorders of environmental origin | Disorders representing collectively the results of assault by external forces, rather than by organic or physiologic dysfunction or by pathogens (e.g., substance-related disorders, wounds, and injuries) |
| Endocrine system diseases | Pathological processes of the endocrine glands and diseases resulting from abnormal level of available hormones |
| Eye diseases | Diseases pertaining to the eye |
| Female genital diseases and pregnancy complications | Pathological processes of the female reproductive system (genitalia, female), and disorders related to pregnancy. Female sexuality and menopause are included. |
| Hemic and Lymphatic diseases | Hematologic diseases and diseases of the lymphatic system collectively. Hematic diseases include disorders involving the formed elements (e.g., erythrocyte aggregation, intravascular) and chemical components (e.g., blood protein disorders) as well as lymphatic diseases that include disorders relating to lymph, lymph nodes, and lymphocytes. |
| Immune system diseases | Disorders caused by abnormal or absent immunologic mechanisms, whether humoral, cell-mediated, or both |
| Male Genital diseases | Pathological processes involving the male reproductive tract (genitalia, male). Male sexuality is included. |
| Musculoskeletal diseases | Diseases of the muscles and their associated ligaments and other connective tissue and of the bones and cartilage viewed collectively |
| Neoplasms | New abnormal growth of tissue. Malignant neoplasms show a greater degree of anaplasia and have the properties of invasion and metastasis, compared to benign neoplasms. |
| Nervous System diseases | Diseases of the central and peripheral nervous system. This includes disorders of the brain, spinal cord, cranial nerves, peripheral nerves, nerve roots, autonomic nervous system, neuromuscular junction, and muscles. |
| Nutritional and metabolic diseases | A collective term for nutritional disorders resulting from poor absorption or nutritional imbalance, and metabolic disorders resulting from defects in biosynthesis (anabolism) or breakdown (catabolism) of endogenous substances |
| Otorhinolaryngologic diseases | Pathological processes of the ear, the nose, and the throat, also known as the ENT diseases |
| Parasitic diseases | Infections or infestations with parasitic organisms. They are often contracted through contact with an intermediate vector, but may occur as the result of direct exposure. |
| Pathological conditions signs and symptoms | Abnormal anatomical or physiological conditions and objective or subjective manifestations of disease, not classified as disease or syndrome (e.g., inflammation, alopecia, fatigue, pain) |
| Psychiatry/Psychology |
Psychiatry: the medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders Psychology: the science dealing with the study of mental processes and behavior |
| Respiratory tract diseases | Diseases pertaining to the respiratory system |
| Skin and connective tissue diseases | A collective term for diseases of the skin and its appendages and of connective tissue |
| Stomatognathic diseases | General or unspecified diseases of the stomatognathic system, comprising the mouth, teeth, jaws, and pharynx |
| Surgical procedures, operative | Operations carried out for the correction of deformities and defects, repair of injuries, and the diagnosis and cure of certain diseases |
| Urologic diseases | Pathological processes of the urinary tract in both males and females |
| Virus diseases | A general term for diseases produced by viruses |
Population for intended use
This field describes the target population of the instrument as selected by the following descriptors:
Adolescent
Adult
All
Caregivers
Female
Geriatrics
Male
Pediatrics (neonate, infant, and child)
Terminal patients
Type of instrument
This category refers to the major concept assessed by the instrument.
| Health-Related Quality of life (HRQL) (incl. health status) | HRQL is multidimensional and represents the patient's evaluation of a health condition and its treatment on daily life: physical function, psychological function, social function, role function, emotional function, well-being, vitality, health status etc. |
| Health-Related Quality of end of life | Same as HRQL at the end of life |
| Patient satisfaction | Evaluation of treatments, patients preference, health care delivery systems and professionals, patient education programs and medical devices |
| Physical functioning | Physical limitations and activity restrictions, e.g., self-care, walking, mobility, sleep, sexual, disability |
| Psychological functioning (incl. coping) | Positive or negative affect and cognitive, e.g. anger, alertness, self-esteem, sense of well-being, distress, coping |
| Signs and symptoms | Reports of physical and psychological symptoms or sensations not directly observable, e.g., energy and fatigue, nausea, irritability |
| Social functioning (incl. work) | Limitations in work or school, participation in community |
| Treatment adherence | Reports or observations of actual use of treatments |
| Utility | Generic measures of HRQol with societal reference weights for their classification systems that can help to inform health-care resource allocation. Utilities provide a useful summary index of overall QoL relative to full health (utility = 1) and death (utility = 0) |
Administration mode
The following modes of administration may be cited:
| Caregiver-administered | A caregiver asks the patient questions and completes the instrument from the patient’s perspective |
| Computer-administered | The instrument is completed on the computer |
| Electronic version | The instrument is completed on an electronic device. The data is compiled automatically |
| IVR-version(IVR: Interactive Voice Response System) | The subject completes the instrument using a software application which enables users to enter data on a telephone keypad or to input information by voice |
| Interviewer-administered | An interviewer asks the patient questions and completes the instrument from the patient’s perspective |
| Nurse-rated | The instrument is completed by a nurse from his/her observation of the patient |
| Clinician-rated | The instrument is completed by a clinician from his/her observation of the patient |
| Proxy-administered | A proxy asks the patient questions and completes the instrument from the patient’s perspective |
| Proxy-rated | The instrument is completed by a proxy from his/her observation of the patient |
| Self-administered | The instrument is completed by the patient himself |
| Telephone-administered | During a telephone interview an interviewer asks the patient questions and completes the instrument from the patient’s perspective |
List of existing translations
The translations listed may not have undergone a full linguistic validation process.
Please check the status of translations with MAPI Research Trust / the developers / copyright holders / distributors.
Restricted Access (reserved for PROQOLID members)
This advanced level, which is only accessible to subscribers, presents a greater degree of practical information on the instruments and, when available, includes a review copy of the instrument, its translations, and a user manual.
View an example: Access the advanced level of the Knee Injury and Osteoarthritis Outcome Score (KOOS) for free (by clicking on the button “Instrument details”).
N.B: PROQOLID provides descriptive information on the instruments. This content is based on information collected in the literature and validated by the authors of the questionnaires. The adequacy of the study methodology and psychometric properties is not evaluated. The instruments presented in PROQOLID may have specific conditions of use. Copies of the instruments are presented for review purposes only. The instruments themselves may require direct contact with, and additional payment of fees to the instruments’ copyright holders.
Updates
- All instruments described in the database are updated regularly in direct collaboration with their developers
- New information is provided on each instrument
- New instruments are added each year
Simple Search Box
This new orange search box is streamlined and simple. It was designed for efficiency and ease of use. Just type in your search terms and press Enter!
Use the simple search engine to search the following fields of information:
- Name of the instrument
- Name of the author
- Translations
- Pathology
- Disease
- Population of intended use
- Domains covered by the instrument
Keep it Simple
This is a quick search engine that does not work with operators. To combine terms in more complex queries, please use the advanced search form.
Query Autocompletion
As you type words, suggested names of instruments appear. Autocompletion helps you find alternate terms that get you to the right instrument faster.
Note: Suggested queries are based on abbreviated and full names of questionnaires only.
More Options
The instruments listed in PROQOLID are classified according to different criteria to enable more efficient searches.
Access those different search options from the simple search form ('More options' button).
Advanced Search (See)
You may search for instruments according to 11 criteria, including the name of the questionnaire, the pathology, the population, or the available languages. The various criteria may be crossed using the following Boolean Operators: AND, OR, NOT.
Alphabetical List (See)
Over 1000 instruments are listed in alphabetical order according to their abbreviated name. Click on any letter at the top of the page and the corresponding alphabetical list will appear. The aim of the list is to give an overview of existing PRO instruments.
Note: Some instruments are only listed (instruments that are not shown in orange characters). For the other instruments, access the free level of information by simply clicking on the orange link (i.e. the abbreviated name of the instrument).
Generic Instruments (See)
The generic instruments are listed on a separate web page.
Pathology/Disease (See)
A specific web page is dedicated to each pathology.
In each pathology, the instruments are listed either as generic instruments of the pathology or by a specific disease. The classification by pathology and disease has been structured based on the Medline’s Medical Subject Headings (MeSH) to ensure that the concepts are widely accepted. Please note that some diseases may be part of several pathologies, e.g., the disease “dementia” is part of both the pathologies “Neurology” and “Psychiatry/Psychology.”
Population (See)
The web page lists the instruments as they apply to specific populations.
Author’s Name (See)
For each instrument described in PROQOLID, the author’s name is mentioned in the list, in alphabetical order.
Click on any letter at the top of the page and the corresponding alphabetical list will appear.
We hope that you find these features useful. Please give us your feedback to help us enhance your search options.
General Policy
MAPI Research Trust is a non-profit organization facilitating access to information in the fields of Patient-Reported Outcomes (PRO) and Epidemiology, promoting the use of scientific approaches in these fields and encouraging exchanges between academics, companies, and international organizations around the world.
By developing PROQOLID, we provide a tool that improves the knowledge and thereby the relevant use of PRO instruments and also enlarges access to PRO resources for all those involved in this field.
For this reason, a significant part of PROQOLID has been made accessible to all users free of charge. However, in the aim to further develop and improve the database by adding more instruments and/or additional information on each instrument, a financial participation is required in order to access PROQOLID advanced level. This financial participation, in the form of a yearly subscription fee, will enable us to further develop this database.
By subscribing to PROQOLID, you are supporting the continuous collection and update of PRO resources.
How to Subscribe to the Advanced Level?
Yearly subscriptions are offered to students, universities, hospitals, institutions, non-profit organizations, as well as pharmaceutical and profit-making companies.
To subscribe to PROQOLID, you may either go to the subscription page or contact us.
The content of the PROQOLID database is based on information taken from scientific literature and/or validated by the authors of the instruments.
The adequacy of the study methodology and psychometric properties is not evaluated.