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Patient-reported outcome questionnaires

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A number of patient-reported outcome (PRO) measures to assess vision-related quality of life (VRQoL) have been developed and validated at CERA, including questionnaires, a health state index, and a utility measure. Some of these instruments are available in different language versions. The following tools are available:

  1. Impact of Vision Impairment Questionnaire (IVI)
  2. Brief Impact of Vision Impairment Questionnaire (B_IVI)
  3. Impact of Vision Impairment Very Low Vision (IVI-VLV)
  4. Impact of Vision Impairment for Children (IVI_C)
  5. Vision and Quality of Life Index (VisQoL)
  6. Instruments in Development

Impact of Vision Impairment Questionnaire (IVI)

The IVI is a questionnaire that measures the impact of vision impairment on vision-related quality of life (VRQoL). It contains 28 items with 3-4 response options using Likert scaling, ranging from not at all to a lot. Items 1-15 have an additional response don’t do this for other reasons. The IVI comprises three vision-specific subscales: ‘reading and accessing information’, ‘mobility and independence’ and ‘emotional well-being’.[1, 2] It has been extensively validated in populations with different levels of vision impairment and various eye conditions, including age-related macular degeneration, glaucoma, cataract and diabetic retinopathy.

Analysis

We recommend that Rasch analysis is conducted on the raw IVI responses in order to:

  1. assess the psychometric properties of the IVI and its three domains, such as scale precision, unidimensionality, item fit, targeting, and differential item functioning, to ensure the IVI fits the Rasch model;
  2. convert ordinal scores into those approximating interval-level measurement. Only interval measures can be used in parametric testing. Rasch analysis also improves measurement precision and increases sensitivity when assessing changes over time.

Should you require assistance with Rasch analysis or input in designing your study, please do not hesitate to contact us at cera-pros@unimelb.edu.au

Main Publications

Original version of IVI – 32 items

[1] Weih LM, Hassell JB, Keeffe JE. Assessment of the impact of vision impairment. Investigative Ophthalmology & Visual Science. 2002 Apr; 43(4):927-35.

Rasch analysis of IVI – 28 items

[2] Lamoureux EL, Pallant JF, Pesudovs K, Hassell JB, Keeffe JE. The Impact of Vision Impairment Questionnaire: an evaluation of its measurement properties using Rasch analysis. Investigative Ophthalmology & Visual Science. 2006 Nov; 47(11):4732-41.

Rasch analysis of domain structure of the IVI

[3] Lamoureux EL, Pallant JF, Pesudovs K, Rees G, Hassell JB, Keeffe JE. The impact of vision impairment questionnaire: an assessment of its domain structure using confirmatory factor analysis and Rasch analysis. Investigative Ophthalmology & Visual Science. 2007 Mar; 48(3):1001-6.

Languages other than English:

Chinese (Mandarin)

[4] Fenwick EK, Ong PG, Sabanayagam C, Rees G, Xie J, Holloway E, Cheng CY, Wong TY, Lim B, Tan PC, Lamoureux EL. Assessment of the psychometric properties of the Chinese Impact of Vision Impairment questionnaire in a population-based study: findings from the Singapore Chinese Eye Study. Qual Life Res. 2016 Apr;25(4):871-80.

German

[5] Finger RP, Fenwick E, Marella M, Dirani M, Holz FG, Chiang PP, Lamoureux EL. The impact of vision impairment on vision-specific quality of life in Germany. Investigative Ophthalmology & Visual Science. 2011 Jun 1;52(6):3613-9.

Melanesian

[6] O’Connor PM, Scarr BC, Lamoureux EL, Le Mesurier RT, Keeffe JE. Validation of a quality of life questionnaire in the Pacific Island. Ophthalmic Epidemiology. 2010 Dec;17(6):378-86.

Telugu and Hindi

[7] Gothwal VK1, Reddy SP, Fathima A, Bharani S, Sumalini R, Bagga DK, Sudharman PM. Assessment of the impact of keratoconus on vision-related quality of life. Investigative Ophthalmology & Visual Science. 2013 Apr 23;54(4):2902-10.

Thai

Ratanasukon M, Tongsomboon J, Bhurayanontachai P, Jirarattanasopa P. The Impact of Vision Impairment (IVI) Questionnaire; Validation of the Thai-Version and the Implementaion on Vision-Related Quality of Life in Thai Rural Community. PLoS One. 2016 May 18;11(5):e0155509.

Not yet validated Language versions:

  • Greek
  • Italian

Guidelines are available if you would like to validate an additional linguistically and culturally adapted version of the IVI. Please contact us on cera-pros@unimelb.edu.au if you would like a pdf copy of the following:

  • Impact of Vision Impairment Questionnaire (English version)
  • Impact of Vision Impairment Questionnaire (Chinese, Mandarin version)
  • Impact of Vision Impairment Questionnaire (Greek version)
  • Impact of Vision Impairment Questionnaire (Italian version)
  • Impact of Vision Impairment Questionnaire (Thai version)
  • Impact of Vision Impairment Questionnaire (Vietnamese version)

Brief Impact of Vision Impairment Questionnaire (B_IVI)

The original 28-item IVI was shortened to 15 items (the Brief IVI or B_IVI) using traditional and Rasch analysis techniques. It is a valid and reliable questionnaire for measuring the impact of vision impairment on vision-related QoL and has similar psychometric properties to the original 28-item IVI. The B_IVI can be used to provide an overall measure of vision-related QoL, and it also contains two subscales which provide measures of visual functioning and emotional well-being.

Main Publications

Fenwick EK, Man RE, Rees G, Keeffe J, Wong TY, Lamoureux EL. Reducing respondent burden: validation of the Brief Impact of Vision Impairment questionnaire. Qual Life Res. 2016 Aug 24. [Epub ahead of print] PMID: 27558785

Please contact us on cera-pros@unimelb.edu.au if you would like a pdf copy of the following:

  • Brief Impact of Vision Impairment Questionnaire (English)
  • Scoring guide of Brief Impact of Vision Impairment Questionnaire (English)

Impact of Vision Impairment Very Low Vision (IVI-VLV)

The IVI-VLV is a valid and reliable measure of VRQoL in persons with very low vision. It is derived from the original IVI. All items of the IVI-VLV are preceded by “How much does your eyesight….” and use the same rating scale with the following four response options: Not at all, a little, some of the time, and a lot. In addition, all items have a Don’t do this for other reasons option. It has two subscales: 1. Emotional Wellbeing (EWB) and 2. Activities of Daily Living, Mobility and Safety (ADLMS). The EWB subscale contains 12 items, and the ADLMS subscale 16 items (a total of 28 items for the IVI-VLV). The IVI-VLV can differentiate between different levels of VRQoL in participants, and measurement is unaffected by almost all levels of general or mental health. The questionnaire is the first instrument to measure VRQoL in persons with severe vision loss whose VRQoL is not captured by available instruments. The IVI-VLV meets all requirements of the Rasch model, and proposed quality criteria for health status questionnaires, such as content validity, internal consistency, reliability, no floor or ceiling effects and good interpretability.

Analysis

We recommend that Rasch analysis is conducted on the raw IVI-VLV responses in order to:

  1. assess the psychometric properties of the IVI-VLV and its two domains, such as scale precision, unidimensionality, item fit, targeting, and differential item functioning, to ensure the IVI-VLV fits the Rasch model;
  2. convert ordinal scores into those approximating interval-level measurement. Only interval measures can be used in parametric testing. Rasch analysis also improves measurement precision and increases sensitivity when assessing changes over time.

Should you require assistance with Rasch analysis or input in designing your study, please do not hesitate to contact us at cera-pros@unimelb.edu.au

Main Publications

Finger RP, Tellis B, Crewe J, Keeffe JE, Ayton LN, Guymer RH. Developing the impact of Vision Impairment-Very Low Vision (IVI-VLV) questionnaire as part of the LoVADA protocol. Investigative Ophthalmology &Visual Science. 2014 Sep 4;55(10):6150-8.

 

Impact of Vision Impairment for Children (IVI_C)

The Impact of Vision Impairment for Children (IVI_C) is a validated vision-related quality of life questionnaire, the items for which were primarily developed from focus groups with children with vision impairment. Focus groups with associated adults (non-specialised class teachers, specialised teachers and parents of children with vision impairment) were also undertaken. None of the items have been derived from the previously developed Impact of Vision Impairment VRQoL (IVI). The IVI_C contains 24 items each of which have 5 Likert responses ranging from Always to Never plus an additional, No, for other reasons. Six of the items are reversed scored to reduce response bias. There is a banner heading at the top of each of the five pages of items, “The questions are all about how things are for you because of your eyesight”. The banner should be read out before the set of items on the page are read. The IVI_C focuses on interaction and classroom dynamics and was the first paediatric VRQoL developed primarily from the perspectives of children. It has been used in India, South-East Asia and the Pacific, the Caribbean, UK and the USA.  Validated forms of the IVI_C are currently available in English, Telugu and Hindi.

Analysis

We recommend that Rasch analysis is conducted on the raw IVI_C responses in order to:

  1. assess the psychometric properties of the IVI_C, such as scale precision, unidimensionality, item fit, targeting, and differential item functioning, to ensure the IVI_C fits the Rasch model;
  2. convert ordinal scores into those approximating interval-level measurement. Only interval measures can be used in parametric testing. Rasch analysis also improves measurement precision and increases sensitivity when assessing changes over time.

Should you require assistance with Rasch analysis or input in designing your study, please do not hesitate to contact us at cera-pros@unimelb.edu.au

Main Publications

English

Development of the original version of the IVI_C (28 items)

[1] Cochrane G, Lamoureux E, Keeffe J. Defining the content for a new quality of life questionnaire for students with low vision (The impact of vision impairment on children: IVI_C). Ophthalmic Epidemiology. 2008 Mar; 15(2):114-20.

Rasch analysis of the IVI_C (24 items)

[2] Cochrane GM, Marella M, Keeffe JE, Lamoureux EL. The Impact of Vision Impairment for Children (IVI_C): validation of a vision-specific pediatric quality of life questionnaire using Rasch analysis. Investigative Ophthalmology & Visual Science. 2011 Mar; 52(3):1632-40.

[3] Cochrane GM, Lamoureux EL. The impact of the severity of vision impairment for children: results from the original Impact of Vision Impairment for Children (IVI_C) research. In preparation.

Rasch analysis of domain structure of the IVI_C

[4] Cochrane GM, Lamoureux EL. The Impact of Vision Impairment for Children (IVI_C): an assessment of its domain structure using confirmatory factor analysis and Rasch analysis. In preparation

Languages other than English:

Telugu and Hindi

[5] Gothwal, Vijaya K.; Sumalini, Rebecca; Irfan, Shaik Mohammad; et al. Rasch Analysis of Impact of Vision Impairment for Children Questionnaire Optometry and Vision Science  2013 Aug; 90(8): 820-7

Guidelines are available if you would like to validate an additional linguistically and culturally adapted version of the IVI_C. Please contact us on cera-pros@unimelb.edu.au if you would like a pdf copy of the following:

  • Impact of Vision Impairment for Children Questionnaire (English version)
  • Introduction (English version only)
  • Interviewer notes (English version only)
  • Response card (English version only)
  • Impact of Vision Impairment for Children Questionnaire (Hindi version)
  • Impact of Vision Impairment for Children Questionnaire (Telugu version)

Vision and Quality of Life Index (VisQoL)

The VisQoL is a health state measure (or index) and has a descriptive system that covers six dimensions: physical well-being, independence, social well-being, self-actualisation, and planning and organisation. Each question is preceded by “Does my vision…” and each dimension has between five and six response categories, ranging from, for example, no effect to unable to do. Two dimensions also have a ‘non-applicable’ option.

Analysis

The health states defined by the VisQoL responses can be translated into VisQoL index values using an available value set derived from surveys using the time trade off method. The value set was generated during instrument validation, using a range of health states in a vision-impaired and vision-unimpaired sample. Item scores were combined using a multiplicative model and the scale of the index ranges from 0-1, where 0.0 represents the worst imaginable vision-related health state, i.e. blindness, and 1.0 represents the best imaginable vision-related health state, i.e. perfect vision. Health states rated worse than blindness are represented by negative values. In order to obtain utilities, the VisQoL index values can be either mapped to the Australian Quality of Life (AQoL) utilities, or the VisQoL can be used as part of the AQoL-7D questionnaire (www.aquol.com.au).

Main Publications

[1] Peacock S, Misajon R, Iezzi A, Richardson J, Hawthorne G, Keeffe J. Vision and quality of life: development of methods for the VisQoL vision-related utility instrument. Ophthalmic Epidemiology. 2008 Jul-Aug; 15(4):218-23.

[2] Misajon R, Hawthorne G, Richardson J, Barton J, Peacock S, Iezzi A, Keeffe J. Vision and quality of life: the development of a utility measure. Investigative Ophthalmology & Visual Science. 2005 Nov; 46(11):4007-15.

Languages other than English:

German

[3] Finger RP, Kortuem K, Fenwick E, von Livonius B, Keeffe JE, Hirneiss CW. Evaluation of a vision-related utility instrument: the German vision and quality of life index. Investigative Ophthalmology & Visual Science. 2013 Feb; 54(2):1289-94.

Telugu and Hindi

[4] Gothwal VK, Bagga DK. Vision and Quality of Life Index: validation of the Indian version using Rasch analysis. Investigative Ophthalmology & Visual Science. 2013 Jul; 54(7):4871-81.

Please contact us on cera-pros@unimelb.edu.au if you would like a pdf copy of the following:

  • VISQOL instrument (English version)
  • VISQOL instrument (German version)

Instruments in Development

Several instruments and outcome measures are currently under development. If you have any questions regarding any of these, please email us on cera-pros@unimelb.edu.au

Diabetic retinopathy QoL item bank

A diabetic retinopathy item bank to measure the impact of diabetic retinopathy and diabetic macular oedema on QoL is currently undergoing validation. The item bank contains 314 items across nine domains of QoL, including Visual Symptoms; Ocular surface symptoms, Activity limitation; Mobility; Emotional; Health concerns; Social; Convenience; and Economic. The item bank will become operational through computer adaptive testing software.

Diabetic retinopathy Health Literacy questionnaire

A questionnaire to assess patients’ diabetic retinopathy specific health literacy is currently being developed and validated.

Impact of Vision Impairment in Residential Care (IVI_RC)
A residential care-specific version of the IVI is currently being validated as part of the Residential Ocular Care (ROC) study, which is a large randomised controlled trial to assess the efficacy of a tailored eye care model for people living in residential care.

Outcomes measures for persons with very low vision

Instrumental Activities of Daily Living Very Low Vision

An assessment of observed and timed performance on a range of instrumental activities of daily living appropriate for persons with very low vision.

Main publication

Finger RP, McSweeney SC, Deverell L, O’Hare F, Bentley SA, Luu CD, Guymer RH, Ayton LN. Developing an instrumental activities of daily living tool as part of the low vision assessment of daily activities protocol. Investigative Ophthalmology & Visual Science. 2014 Nov; 55(12):8458-66.

Orientation & Mobility Assessment Very Low Vision

An assessment of observed performance on a range of orientation and mobility tasks appropriate for persons with very low vision.

Please contact us on cera-pros@unimelb.edu.au if you would like a pdf copy of the following:

  • Impact of Vision Impairment Profile (English version)