FAQ

This is the Registry of Outcome Measures Frequently Asked Questions page.  You can browse the topics below to find answers to frequently asked questions.  If you can't find the answer you are looking for, please contact the Registry Co-ordinator for assistance.

Categorised Questions:

1 - USING THE REGISTRY OF OUTCOME MEASURES (ROM)

2 - MANAGING THE REGISTRY OF OUTCOME MEASURES

Categorised Questions and Answers:

1 - USING THE REGISTRY OF OUTCOME MEASURES (ROM)

What is ROM and what information does it provide?
ROM is an on-line database, openly accessible via a web interface. It provides:

  • names of existing outcome measures and/or outcome measure devices;
  • summarised information about each outcome measure;
  • contact details; and
  • links to related information or sources of information.
Do I need a login?
No, not to browse and view the records listed in the public interface. You will only need a login if you wish to contribute to maintenance of ROM. If you wish to contribute, contact the Registry Co-ordinator for more information.

How do I search for records in ROM?
You can view records in numeric then alpha order by OM Name in the View A-Z page.  ROM also has a built in search engine. You will find a link to both the View A-Z and Search engine on the navigation menu running down the left hand side of the page, just above the FAQ link.

There are a few different searches you can perform. Basically you can search for any word included in a record. You can perform more targeted searches by:

  • limiting your search to an OM title, abbreviation or keyword; and/or
  • limiting results to those that match all words or an exact phrase.
How do I interpret the information I get?
Each record is presented in a series of form sections. The number and type of form sections will vary from one OM to the next.  We hope most of the information will be self-explanatory, but felt that three fields required a little clarification.  This is provided below.  If you require clarification in relation to any other fields, please contact the Registry Co-ordinator.

Disease Type:

We are currently investigating options that will allow us to provide more clarity in regard to disease type and we hope to have a practical solution in place in the not too distant future. For the time being, if the OM:

  • has been used but not validated for any disease within a disease type, it will be flaffed as 'Used' for that disease type.
  • has been used and validated for any disease within a disease type, it will be flagged as 'Validated' for that disease type.
Question Type:

These are the standard definitions we have adopted to define 'question type' within the Registry of Outcome Measures.  They aim to provide a clear and consistent basis for entry and interpretation of information within the Registry and to form a clear picture of what will be required of respondents in order to complete a given questionnaire or scale.  Accordingly, the question type will be recorded as:

  • True/False – if the respondent is asked to indicate if they believe a statement to be true or false.

    e.g. Your symptoms are worse in the afternoon than in the morning? True or False
  • Yes/No – if the respondent must answer yes or no to the question. In some instances the respondent may be given a third option such as ‘uncertain’ or ‘don’t know’.

    e.g. Do you fully understand this explanation? Yes or No
  • Likert – if the respondent is asked to indicate their level of agreement with a statement, with response options normally ranging from strongly agree to strongly disagree.

    e.g. Pain is the most important factor effecting your daily enjoyment of life.
    A. Strongly Agree
    B. Agree
    C. Neither Agree nor Disagree
    D. Disagree
    E. Strongly Disagree (X)

  • Visual Analog Scale – if the respondent is asked to place a mark (e.g. circling a point) on a horizontal line to indicate their response to a question.

    e.g. Place a mark on the line below to indicate if you have more good days in a week than you have bad days in a week.

    More good |--x-----------|--------------| More Bad

    Likert and Visual Analog Scales may be combined.
  • Multiple Choice – if the respondent is given two or more possible responses to a question and required to choose 1.

    e.g.1. Which of the following best describes your ability to get out of a chair by yourself?
    A. Easy
    B. Difficult (X)
    C. Impossible

    e.g.2. Which of the following best describes your mood at the moment?
    A. Depressed
    B. Sad
    C. Happy (X)
    D. Elated

    NB: While True/False, Yes/No and Likert question types are forms of Multiple Choice they should be identified in their own right because of the specific and consistent nature of the response options.
  • Multiple Select – if the respondent is given two or more possible responses to a question and asked to mark all responses that apply to them.

    e.g. Which of the following symptoms have you experienced in the last 6 weeks? Select all symptoms you have experienced, regardless of severity or duration.
    A. Fatigue (X)
    B. Loss of Appetite
    C. Loss of Motivation
    D. Loss of Concentration (X)
  • Rank/Order – if the respondent is given a list of options and asked to rank them in a specific order. The respondent ranks each option.

    e.g. Rank the following in order of importance to you, where 1 = most important and 4 = least important.
    A. Medicine (2)
    B. Physiotherapy (3)
    C. Technological Support (4)
    D. Human Support (1)
  • Free Text – if the respondent has to provide their own response. They are not given options to choose from.

    e.g. How would you describe the weather today?
  • Numerical Input – if the respondent is asked to provide a numerical response to a question.

    e.g. How many times a week do you experience symptoms of your illness?
  • Date – if the respondent is asked to provide a date based response.

    e.g. On what approximate date did you first experience the symptoms?
Actual Muscles Tested:

In this field, a mark in the column headed 'Not Defined' indicates that a muscle has been tested but the test is not prescribed by the OM as being proximal or distal as is sometimes the case.  Where the nature of the test is prescribed as proximal or distal, a mark will appear in the corresponding column for tested relevant muscles.

Who do I contact if I need help/information?
If you can’t find the answer to your question in an FAQ, contact the Registry Co-ordinator for assistance.

What should I do if I cannot find the OM I am looking for?
Have you tried using ROMs dedicated search engine? If not, try it. Information on conducting searches is provided above. If that fails, contact the Registry Co-ordinator for assistance.

Can I find OMs for specific diseases?
Sometimes! At present ROM pro-actively collects information about the broad disease type to which each OM applies, but only for a select group of diseases. Accordingly you may find a match for a specific disease, but only if the OM contributor has entered the name of the specific disease in the text of the record somewhere. For this reason, database searches that rely on a specific disease will return incomplete and random results. You will get more comprehensive results if you search for OMs that apply to a broad disease type.


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2 - MANAGING THE REGISTRY OF OUTCOME MEASURES

Who manages ROM?
Overarching system administration and management is the responsibility of the Registry Co-ordinator, acting on behalf of King’s College London and TREAT-NMD.

Individual records within the database are managed by authorised maintenance officers from around the world, in co-operation with the Registry Co-ordinator.

Are there any responsibilities or obligations associated with management of ROM?
Yes – in order to be granted maintenance level access to the database, individuals agree to abide by certain terms and conditions to protect the integrity of the database.  This is an agreement between the individual, KCL and TREAT-NMD.  Please contact the Registry Co-ordinator for more information.

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