» Background and objectives

» PROQOLID content

» How to search for instruments?

» General policy

» How do I subscribe to PROQOLID's advanced level?

• 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

• Level 1. Free access:

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; the 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, 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 (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 disease 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. Hemic diseases include disorders involving the formed elements (e.g., erythrocyte aggregation, intravascular) and chemical components (e.g., blood protein disorders); lymphatic diseases 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 muscle
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 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

Adolescent
Adult
All
Caregivers
Female
Geriatrics
Male
Pediatrics (neonate, infant and child)
Terminal patients

Health-Related Quality of life (HRQL)	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	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	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)

[d]  Mode of administration: 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

[f]  List of existing translations: the translations may not have undergone a full linguistic validation process. Please check status of translations with Mapi Research Trust / the developers / copyright holders / distributors

• Level 2. Restricted access (for ProQolid's members only)

• Level 2.1: Practical information

This advanced level, which is accessible to subscribers only, presents a greater degree of practical information on the instruments and, when available, includes the review copy of the instrument, its translations and the user manual:

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 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 a review purpose only. The instruments themselves may require direct contact with, and additional payment of fees to the instruments' copyright holders. 

• Level 2.2: The PRO database identification form

To facilitate the researcher’s access to information on available datasets, we aim to identify, list and describe existing PRO databases created from national or international clinical studies. By making this available, data interpretation can be improved through access to comparative data from studies using the same or different PRO instruments.
The focus of the resulting collection is to provide practical information available on the Internet and not access to the data itself.

For over 50 instruments, a PRO database created from the collection and centralization of instrument's data from national and international studies was identified.

The general description of each database includes its location, conditions of access and the contact details of the person or organization for more information.

More specific information is provided on the structure of the database, the surveyed population(s) and the various study(ies) in which the instrument was used. Furthermore, reference is made to population size and availability of data per study, age group, sex, ethnicity, disease, condition severity or country.


Updates:

• Access to the instruments by alphabetical list: over 1000 instruments are listed in alphabetical order according to their abbreviated name. Please 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 bold green characters). For the 620+ instruments that are in bold, you can access the free level of information by simply clicking on the green link (the abbreviated name of the instrument).
• Access to the generic instruments: the generic instruments are listed on a separate webpage.
• Access to the instruments by pathology/disease: a specific webpage 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".
• Access to the instruments by targeted population: the webpage lists the instruments as they apply to specific populations.
• Access to the instruments by author's name: for each instrument described in ProQolid, the author's name is mentioned in the list, in alphabetical order. Please click on any letter at the top of the page and the corresponding alphabetical list will appear.
• Search engine: 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.

  
Mapi Research Trust is a non-profit organization that promotes Patient Reported Outcomes (PRO). 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.

• go to the online payment page
• or contact:
  Marie-Pierre Emery
  Mapi Research Trust
  Information Resources Centre
  27, rue de la Villette
  69003 Lyon, France
  Phone: +33 (0) 4 72 13 65 75
  Fax: +33 (0) 4 72 13 66 82
  E-mail: mpemery@mapigroup.com

ISOQOL members benefit from a new arrangement with Mapi Research Trust

The Mapi Research Trust and the ISOQOL Board of Directors have settled on a generous discount program on PROQOLID annual subscriptions.
It enables the ISOQOL’s members to save up to 25% on yearly subscriptions to our online Patient-Reported Outcome and Quality of Life Instruments Database.
This arrangement makes PROQOLID more affordable than ever to ISOQOL’s approximately 600 members worldwide.
Please go to the online payment page.