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    About ProQolid


    » Background and objectives

    » PROQOLID content

    » How to search for instruments?

    » General policy

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


    Background and objectives

    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 project of a Quality of Life Instruments Database (QOLID) was initiated by Mapi Research Institute to provide all those involved in health care 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 has been renamed PROQOLID, short for “Patient-Reported Outcome and Quality of life Instruments Database” in January 2005.

    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
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    ProQolid content


     The information on the PROQOLID website is structured in two levels:
    • Level 1. Free access:
    This level is available to all visitors at no charge. For each instrument, it provides the following brief and descriptive information:


     

    a:  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.
    b:  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
    c:  this category refers to the major Patients-Reported Outcome (PRO) domains to which each instrument belongs. These include:
    Coping
    Disability/physical functioning
    Health status
    Psychosocial/Psychological
    Quality of end of life
    Quality of life
    Satisfaction
    Social functioning
    Symptom/functioning
    Utility
    Work
    d:  the following modes of administration may be cited:
    Caregiver-administered
    Computer-administered
    Electronic version
    IVR-version
    Interviewer-administered
    Nurse-rated
    Physician-rated
    Proxy-administered
    Proxy-rated
    Self-administered
    Telephone-administered
    e:  a database is created by collecting and pooling instrument's data from national and international studies.
    f:  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. 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:
    * All instruments described in the database are updated at least once a year in direct collaboration with their developers
    * New information is provided on each instrument
    * New instruments are added each year.

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    How to search for instruments?
      
    The instruments listed in PROQOLID are classified according to different criteria to enable more efficient searches. The different lists are accessible from the Search page of PROQOLID. Click on the free access or restricted access icon of the Home page to display the Search page.

    • 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 540+ 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 10 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.
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    General policy
      
    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 as well as 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.
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    How do I subscribe to PROQOLID's advanced level?

    Yearly subscriptions are offered to students, universities, hospitals, institutions, non-profit organizations, as well as pharmaceutical and profit-making companies.
    Subscriptions offer full access to PROQOLID for one year. Access is granted through the allocation of personal passwords for each subscription.

    To subscribe to PROQOLID, you may either:

    ISOQOL members benefit from a new arrangement with Mapi Research Trust

    We are pleased to report that, following discussions between the Mapi Research Trust and the ISOQOL Board of Directors, a generous discount program on PROQOLID annual subscriptions has been worked out.

    It enables the organization’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.

    Go to the online payment page

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