The Patient Centred Outcomes Research Group has developed a number of Patient Reported Outcome Measures (PROMs) that are available for use by other research groups and institutions. We do not charge for use of the questionnaires but we do ask that people wanting to use them make a formal request to us via s.dickinson@leeds.ac.uk
Questionnaires
SIDECAR
SIDECAR stands for Scales measuring the Impact of DEmentia on CARers. It is a questionnaire designed to measure the quality of life of carers of people with dementia. The questionnaire is made up of 3 scales, one primary (18 questions) and two secondary (10 and 11 questions). Each one measures a different ‘theme’. All the questions within the scale are scored using a binary Agree/Disagree response format. People are asked to respond for how they are TODAY.
You can access SIDECAR through the University of Leeds fast licensing platform. The link is as follows: https://licensing.leeds.ac.uk/
Type ‘SIDECAR’ into the search box and you will be taken to the page.
Social Difficulties Inventory (SDI-21)
The Social Difficulties Inventory (SDI-21) is a twenty one item questionnaire developed to assess everyday problems experienced by cancer patients. Responses to all items are on a 4 point scale ranging from “0” no difficulty to “3” very much difficulty. SDI-21 scores may be reported in three ways:
- Individual item scores
- Three subscale scores (Everyday living, Money matters, Self and others)
- Social Distress (SD-16) score
You can access the SDI questionnaire through the University of Leeds fast licensing platform. The link is as follows: https://licensing.leeds.ac.uk/product/the-social-difficulties-inventory
Sample copies of the SDI-21 and the corresponding scoring guidance can be downloaded here:
Please read our Terms of Use: SDI_TermsOfUse.pdf
The SDI-21 is currently being used:
- in routine patient centred assessment in cancer care,
- as an outcome measure in research,
- as one of the survey measures in the National Cancer PROMs survey (http://cancerproms.ncr.nhs.uk/)
References to the development of the SDI-21 are listed below.
Wright E P, Kiely M A, Lynch P, Cull A, Selby P J. Social problems in oncology. British Journal of Cancer 2002: 87: 1099-1104.
Wright E P, Kiely M, Johnston C, Smith A B, Cull A, Selby P J. Development and evaluation of an instrument to assess social difficulties in routine oncology practice. Quality of Life Research 2005: 14: 373-386.
Smith A B, Wright P, Selby P, Velikova G. Measuring social difficulties in routine patient-centred assessment: a Rasch analysis of the social difficulties inventory. Quality of Life Research 2007: 16: 823-831.
Wright P, Smith A, Roberts K, Selby P, Velikova G. Screening for social difficulties in cancer patients: clinical utility of the Social Difficulties Inventory. British Journal of Cancer 2007: 97: 1063-1070.
Wright P, Marshall L, Smith A, Velikova G, Selby P. Measurement and interpretation of social distress using the social difficulties inventory (SDI). European Journal of Cancer 2008: 44: 1529-1535.
Smith A, Wright P, Selby P, Velikova G. Measurement invariance of the 16-item social distress scale. Quality of Life Research 2011: 20: 507-511.
Wright P, Smith A B, Keding A, Velikova G. The Social Difficulties Inventory (SDI): development of subscales and scoring guidance for staff. Psycho-Oncology 2011: 20: 36-43.
Hanif N, Dharni N, Smith A, Chattoo S, Velikova G, Bradley C, Stark D, Wright P. Translation of the Social Difficulties Inventory (SDI-21) into three south Asian languages and preliminary evaluation of SDI-21(Urdu). Quality of Life Research 2011: 20: 431-438.
Ashley L, Keding A, Brown J, Velikova G, Wright P. Score equivalence of electronic and paper versions of the Social Difficulties Inventory (SDI-21): a randomised crossover trial in cancer patients. Quality of Life Research. 2013;22(6):1435-40.
Ashley L, Velikova G, Downing A, Morris E, Wright P. Health-related quality of life in cancer survivorship: predictive power of the Social Difficulties Inventory Psychooncology. Early view. Accepted for publication 4 January 2017. DOI: