Patient-Centred Outcome Measures





Patient-Centred Outcome Measures


These are also known as ‘patient-reported outcome measures’ and ‘patient relevant outcome measures’. Patients are not only interested in improvements in clinical data (e.g. visual acuity), but rather in how treatments are going to affect their everyday functioning and quality of life (QoL) ( ). Measures of patient-reported functioning are designed to capture these effects and have been growing in importance through many branches of healthcare.


The success of an operation or treatment was previously only measured by achievement of visual-impairment (VI) goals, in quantifiable measurements, but nowadays, self-reported visual function is very important to assess treatment outcomes ( ). There is no perfect correlation between clinical measurements and patient perception of visual function. Visual-functioning assessment can detect impacts on performance that might not appear in a routine eye examination ( ). However, several studies ( ) have found an association between scores of functional status, visual acuity and QoL. , on the other hand, showed that measures of visual acuity, visual functioning, well-being, Amsler grid testing and retinopathy were independent of one another. In agreement with these findings, showed that measures of functional status provide information not covered by measures of visual acuity. In retinal detachment surgery, determined that in some cases, visual acuity was a bad predictor of QoL. Their findings demonstrated that even after what they considered a successful operation, with visual acuity almost back to normal, patients’ scores of QoL were reduced.


Quality of Life


Many studies have tried to define QoL ( ) and relate it to life satisfaction, well-being or happiness ( ). QoL is a difficult term to define, as shown by the large number of papers in the literature trying to label and classify it. The World Health Organization ( ) has defined QoL as a subjective perception of a person’s situation in life. It has been described as a multidimensional concept, influenced by several factors ( ). These factors include: mental and physical health; economic situation; education; friends and family. terms these factors as domains and identifies: physical domain; psychological domain; level of independence; social relationships; environment; spirituality; religion; and personal beliefs.


Definitions and domains of QoL depend on the area of research and on the author. However, the majority of definitions are similar and, although using different terms, they refer to equivalent aspects, as observed in Table 4.1 ( ).



Table 4.1

Factors Influencing QoL According to Different Studies

























AUTHOR
Field of Research
Disability/Psychology Health Social Indicators Disability
Six possible domains:

  • 1.

    Physical well-being


  • 2.

    Material well-being


  • 3.

    Social well-being


  • 4.

    Productive well-being


  • 5.

    Emotional well-being


  • 6.

    Rights or civic well-being

Eight core domains:

  • 1.

    Physical well-being


  • 2.

    Material well-being


  • 3.

    Social well-being


  • 4.

    Emotional well-being


  • 5.

    Rights


  • 6.

    Impersonal relations


  • 7.

    Personal development


  • 8.

    Self-determination

Six domains:

  • 1.

    Physical


  • 2.

    Environment


  • 3.

    Social relationships


  • 4.

    Psychological


  • 5.

    Level of independence


  • 6.

    Spiritual

Seven core domains:

  • 1.

    Health


  • 2.

    Material well-being


  • 3.

    Feeling part of one’s local community


  • 4.

    Work and productive activity


  • 5.

    Emotional well-being


  • 6.

    Relationships with family and friends


  • 7.

    Personal safety

Seven core domains:

  • 1.

    Health


  • 2.

    Material well-being


  • 3.

    Community well-being


  • 4.

    Work/productive activity


  • 5.

    Emotional well-being


  • 6.

    Social/family connections


  • 7.

    Safety


QoL , Quality of life; WHO , World Health Organization.


Measuring ‘Vision-Related Quality of Life’ in Adults


Considering all the possible contributing factors, a decision has to be made as to which will be most relevant and meaningful to investigate. These measures of QoL often look at ‘activity limitation’ and sometimes ‘adaptation to visual loss’ and ‘participation restriction’. However, the scope and definitions of each of these parameters does vary considerably between studies, and the terminology is not always used in accordance with International Classification of Functioning, Disability and Health (ICF) definitions. These studies usually use questionnaire or interview techniques to assess the perceived impact of the ophthalmic condition on physical (mobility, ambulation), psychosocial (alertness, communication, social interaction) and other (home management, sleep, hobbies) aspects of life. noted that very few questionnaires deal with participation restriction and devised the Keele Assessment of Participation to fill this gap.


In vision care, such questionnaires (often called ‘instruments’) were first used in relation to cataract surgery, both in deciding when to operate and in monitoring the improvement which the procedure brings. was the first to suggest that a successful outcome for cataract surgery did not just mean a clear optical axis and a healthy eye as assessed by ophthalmoscopy but a patient who could function better as a result. Visual acuity is a useful measure to quantify VI, although other parameters such as peripheral vision, sensitivity to motion, contrast sensitivity or glare are important for a complete visual assessment ( ). Even such a comprehensive assessment is limited as it cannot predict the visual functioning of patients in their daily activities, and their ability to perform everyday chores ( ). It is well-accepted that visual acuity is not a good measure of when cataract operations should be performed and that the patient’s ‘satisfaction’ with their vision is more significant. Considerable variation exists in the frequency of cataract operations in different geographical areas which have apparently similar populations, suggesting that different (probably highly subjective) criteria are being applied in these areas. The use of other visual tests, such as glare disability, will be discussed in Chapter 10 , but the use of a ‘functional status questionnaire’ may offer another way of providing a quantitative description of function.


The general structure of questions (usually called ‘items’) on such tests is:




  • Does your vision cause you difficulty in doing tasks?




    • Yes




      • A little



      • A moderate amount



      • A great deal



      • Unable to do the task




    • No




      • Not applicable-have never done this task



      • Reasons other than vision cause difficulty with task





The question will be repeated for several tasks such as driving at night, reading a newspaper, watching television, or preparing food ( ).


Researchers who devise such questionnaires face some difficulty in providing evidence of their validity. Obviously some correlation with visual acuity would be expected, and it is greater for those tasks that you would expect to be visually demanding, such as reading in dim light ( ), than for a task like eating ( ). The whole purpose of the questionnaires, however, is to overcome the apparent deficiency of visual acuity as a measure of functional status. reported a better correlation of functional status with the rather simplistic grading of patient ‘satisfaction’ (simply asking them if they were very satisfied, satisfied, dissatisfied or very dissatisfied): there was no correlation at all between visual acuity and satisfaction with vision! What is really required of course is to show that a visual improvement produces a proportional increase in functional status and QoL, and this has been reported for patients who have undergone cataract surgery ( ). As well as functional ability, QoL also embraces the emotional impact that poor vision has on the patient’s perception of their well-being on such diverse scales as energy/ fatigue, social functioning and pain ( ). In this extremely complex area, there may also be evidence of the corollary effect where patients with other health difficulties report greater problems with their vision than can be objectively measured ( ).


VI has an impact on QoL, with patient’s feelings (e.g. hopelessness, depression) being similar to those caused by other chronic illnesses ( ). determined that these effects are related to the severity of the VI and not to the eye condition. It has been accepted that when the vision decreases to the stage of low vision, the patient loses independence ( ). QoL has been related to dependency in activities of daily living (ADLs), suggesting that early detection and intervention might be crucial for a successful rehabilitation ( ).


Issues in Questionnaire Design


One of the problems that researchers encounter when they try to validate a questionnaire is the scoring ( ). The majority of questionnaires found in the literature use ordinal ranking data for each item (e.g. 1 to 5). However, sums of ordinal data, at face value, have no meaning, and individuals with the same score can represent very different characteristics. Then, various statistical models ( ) can be used for validation purposes, such as the Rasch model ( ). The Rasch model helps to transform the raw data into a meaningful interval scale through logarithmic transformations and probabilistic equations ( ). Rasch analysis ( Fig. 4.1 ) does not assume that all items have the same level of difficulty and that all persons have the same ability but weights them accordingly ( ). Rasch analysis is a probabilistic model that helps to define the difficulty of an item independently of the population, and the ability of a person independently of the items resolved by this person ( ).




Fig. 4.1


A schematic representation of Rasch ‘person-item’ analysis of the results of a vision-related quality of life questionnaire. The questions/items are ranked by their visual difficulty, and the respondents/persons are ranked according to their functional ability. iStock.com/zuperia; iStock.com/IconicBestiary; iStock.com/Lyudinka; iStock.com/BRO Vector; iStock.com/jossnatu; iStock.com/intararit; iStock.com/SurfUpVector; iStock.com/Sudowoodo; iStock.com/Dmitrii Musku.


Clinically, a measure of QoL is going to be useful if it is: reliable, valid and appropriate, responsive, interpretable, simple, quick to administer and complete, and easy to score ( ).


Reliability refers to the consistency of a set of measurements or measuring instrument used to describe a given property or behaviour and has a number of aspects ( ). Test-retest reliability is the reproducibility of a given measure and refers to the degree to which scores stay the same over time, in a situation where no change is expected ( ). The participants should score similarly on the items between two assessments in a relatively short period of time ( ). Intraclass correlation coefficients (ICCs) should be higher than 0.60 over a 2-week period or less ( ). Reliability does not imply validity; a measure can be reliable and not valid. Scores can be internally consistent and stable over time, and yet the instrument does not measure what it is supposed to determine.


Validity is the extent to which an instrument measures what it is supposed to be measuring ( ). Reliability is precision, whereas validity is accuracy ( ). An instrument is said to have content validity if it covers all the aspects of a domain (e.g. social support: tangible, affectionate, instrumental, informational and positive social interaction) ( ) and face validity if it seems to be measuring what it is supposed to measure: whether it ‘looks like’ is going to assess what it says, rather than it ‘has been shown to work’. It refers to the degree to which a measure is sensitive to the participants’ interests ( ).


According to , a questionnaire has good content validity when the authors design the items by examining the literature, as well as consulting patients and/or experts. They consider the consultation of patients a prerequisite, because the questions are about them or their feelings and how they perceive their problems. An initial (large) number of suggested questions should be reduced during the development process by removing those that are not applicable to a large section of the population; are too easy for the participants; ask about a different concept; or are redundant (with content covered by the rest of the questions).


Convergent (or concurrent) validity measures the degree to which an instrument correlates to other measures of the same or similar construct (the results of the measure are compared to the results of the gold standard obtained at approximately the same point in time) ( ). Discriminant validity is the capacity to differentiate between cases and controls or disease severity groups ( ). proposed that an r value of 0.10 was a low correlation, 0.30 was moderate, and 0.50 was a high correlation. Construct validity estimates how well a measure correlates with other indicators of similar related constructs (i.e. reflects the ability of an instrument to measure an abstract concept, or construct. There is not always a gold standard) ( ). Construct validity can be measured by the infit and outfit statistics (indices of measurement accuracy). Infit statistics detect unexpected patterns on responses to items (by individuals) that are targeted on them. Outfit statistics detect unexpected patterns on responses to items that are considered relatively easy or very hard for the individual.


Internal consistency is the extent to which all items measure the same construct and is tested using Cronbach’s formula for coefficient alpha ( ). Cronbach alpha should be higher than 0.70 for group comparisons and test-retest reliability ( ).


When checking for subscales in the questionnaire, items that do not load (i.e. do not correlate with any other items measuring a similar construct) on any factor or that load in multiple factors should be eliminated. Cronbach alpha is a statistic commonly used to express this correlation ( ) and should be between 0.70 and 0.90.


also described the term Responsive-ness as the extent to which the instrument can identify variations in individuals known to have a change in visual functioning. This will be particularly important if the instrument is to be used to assess the effect of a particular intervention. Interpretability is the ability to understand the scores on a measure ( ), and the degree to which it is possible to assign qualitative meaning to quantitative data ( ). For interpretability, mean scores and standard deviations should be given for the population on which the instrument was tested. Respondent burden ( ) is the demand imposed on the participants (i.e. usually mostly time, but also energy and emotional stress). Some participants may not complete the full questionnaire, and the proportion of missing values can be an indication of respondent burden.


A related issue which is particularly relevant to a visually impaired population is how the questionnaire will be delivered. The usual method is self-administration, often in written format. However, this can create difficulties for those with a VI or carry the risk that another person completes it on their behalf. In-person administration by the researcher or clinician can be time-consuming and lead to bias. Online completion and telephone interview with an independent person are possible alternatives that may be useful in some populations.


Questionnaires Designed for People With Visual Impairment


The Impact of Visual Impairment (IVI) questionnaire ( ) was developed to assess the vision rehabilitation needs in the context of participation restriction and was supposed to be useful when measuring intervention outcomes.


According to , the IVI questionnaire is an instrument targeted at people with VI and it covers several dimensions of QoL, such as functional, social and psychological. The authors described a high content validity and reproducibility for this scale, whilst interpretability and respondent burden were considered to be average. Nevertheless, the IVI appears to address questions which relate to visual functioning of the patient and their limitation in their daily activities (e.g. reading labels and instructions in medicines) and patients’ feelings (e.g. feeling embarrassed) and not just participation restriction aspects (e.g. ‘I have taken part in social activities as and when I have wanted’). With such a wide-ranging content, it is difficult for a questionnaire to be responsive to simple rehabilitation strategies such as providing a magnifier.


The Low Vision Quality of Life (LVQOL) questionnaire aims to identify and quantify the impact of visual impairment on aspects like independence, mobility, time for oneself, and daily tasks ( ). This questionnaire was developed using patients with a wide variety of conditions causing untreatable vision loss. The authors reviewed the literature in order to gather all the subjective questionnaires previously designed to measure QoL. The resulting items were combined, so no repetition occurred. The questions were then revised by a group of experts (optometrists, ophthalmologists, orthoptists, occupational therapists, welfare officers, audiologists and those with low vision), with items not relevant to the majority of persons with low vision excluded. The 74-item questionnaire was conducted on a random sample ( n = 150 from the database of the Vision Australia Foundation) of subjects with low vision.


The LVQOL questionnaire is supposed to differentiate persons with low vision from those with ‘normal’ vision. For this purpose, the study included an age-matched and gender-matched control group of 70 subjects attending the optometric clinic (with minor eye conditions such as early cataracts, blepharitis, or dry eye). Internal consistency was calculated using the item-total correlation and Cronbach’s α and reliability using the ICC. The authors determined that a homogeneous scale (internal consistency) was that which focused on the different aspects of the same attribute. Consequently, items should be moderately correlated to each other and to the total scale score. Furthermore, when the items are highly correlated, questions add little information (redundancy). However, when the correlations are very low, the questions refer to different attributes. Four questions were removed using this principle (Cronbach’s α). The questionnaire was completed four times in a 4-week interval (short period for a potential change in patients’ situation and long enough, so the participants do not remember their prior answers) to assess test-retest reliability. Those items that remained unchanged were selected. Using these methods, the scale was reduced to 25 items. The LVQOL questionnaire was confirmed to have high internal consistency (Cronbach’s α = 0.88) and reliability (0.72). The questionnaire was designed to produce a summed score of the patients’ QoL (between 0 and 125, with a higher score indicating better QoL).


Varimax rotation identified four principal factors (i.e. general vision, mobility and lighting issues; psychological adjustment; reading and fine work; and ADLs) in the LVQOL, each with internal consistency (Cronbach’s α >0.80). The questionnaire also appeared sensitive at differentiating people with low vision and those with normal sight. Less than 20% of the subjects with low vision scored 95 or higher in the questionnaire, compared with 65% in the control group. This scale is a suitable clinical tool to quantify the QoL of patients with low vision.


It takes 5 to 10 minutes to complete and it is easy to understand by the subjects. Furthermore, on the systematic review of QoL questionnaires conducted by , the LVQOL questionnaire ( ) was considered to have high quality concerning psychometric aspects. Based on their research, the scale has good content validity (i.e. selection of items, item reduction, checking for subscales and internal consistency) and fair reproducibility and interpretability. The LVQOL was considered to be the gold standard at that time ( ) and therefore has been used in many studies ( ), when measuring QoL in people with low vision.


Another questionnaire specifically measuring visual functioning is the 48-item Veterans Affairs Low-Vision Visual Functioning Questionnaire (VA LV VFQ-48) ( ). This instrument measures visual efficacy in terms of overall ability, mobility, visual information processing and visual motor skills ( ). Theoretically, the questionnaire consists of 48 items (activities) that the subject has to categorise from not difficult to impossible to accomplish. But there are two further questions (is it difficult because of your vision?/how do you usually perform this activity?) that must be applied to every item of the questionnaire. Hence, the 48 items prove to be 144 questions, and as observed takes around 35 minutes on the telephone. The short form of this questionnaire is only 20 items, again theoretically. In practice, these 20 items actually become 60 questions. The authors did not state how long the interview would last for this short form, but it would probably take about 15 minutes. The VA LV VFQ-48 scale is a very comprehensive tool to obtain accurate measures of the visual ability when time is not an issue: it has been designed to be sensitive to rehabilitation. The items were developed and chosen by a multidisciplinary team of clinicians and researchers as well as persons with vision loss. The items were calibrated with Rasch analysis to reflect their difficulty. The analysis includes standard errors of each estimate and reliability coefficients in order to calculate measurement precision. Test-retest reliability was assessed by readministering the questionnaire to 30 patients after 3 or 4 weeks (ICC = 0.98) ( ). established the sensitivity and validity of the VA LV VFQ-48 as a measure of low-vision rehabilitation outcomes. In this study, the questionnaire was administered to 71 veterans (individuals with low vision and legally blind), before and 4 months after receiving rehabilitation. The results showed improved person measures postrehabilitation in legally blind patients. On the other hand, patients with less severe VI (near normal visual acuity) seemed to remain constant, before and after rehabilitation. The instrument appeared to be a sensitive measure for those patients with severe VI. As the VFQ has been Rasch analysed, it is possible to select only some of the items, and then the questionnaire responses can be scored using previously published algorithms ( ). Based on this, a 15-item ‘near vision’ questionnaire was devised (NV-VFQ-15) by selecting appropriate items from the VFQ-48 questionnaire for a study which assessed the effectiveness of portable electronic vision enhancement systems (p-EVES) in addition to optical aids for patients seen in a hospital clinic ( ).


designed a visual function questionnaire (the Activity Inventory [AI]) which has the feature that each patient responds to an individually tailored set of questions. The questionnaire is divided into three objectives (daily living, social interactions and recreation), under which lie 50 goals and each goal (e.g. cooking) has a collection of tasks (e.g. reading a recipe). The patients have to rate the importance and difficulty of each goal as well as the difficulty of the tasks that serve these goals. The result of the patient’s answers provides a functional history and the data needed to estimate the patient’s visual ability. The reasoning for designing this questionnaire is interesting because it is true that when using a fixed-number-of-items questionnaire, some of the questions are not relevant to some patients (e.g. respondents are allowed to skip items based on responses to screening questions, or by permitting them to respond that the item is not applicable or that they do not do the activity described for reasons other than vision). The skipped answers lead to difficulty handling these missing data in the final analysis, particularly when using conventional Likert-type scoring algorithms. Although Rasch analysis can overcome this problem, the authors argue that it would be even more reasonable to use a tailored questionnaire for each patient in addition to Rasch analysis.


The AI can be helpful in clinical practice to address goal-oriented components of the rehabilitation plan, as a tool to plan rehabilitation, evaluate patient progress and measure outcomes. The key is that it is possible to use this questionnaire to obtain specific information for a particular patient and plan and adapt the rehabilitation according to the patient’s priorities and goals.


Other Vision-Related Questionnaires


There are other instruments described in the literature, such as the Visual Function Self-report (VF-14) ( ), the Activities of Daily Vision Scale ( ), the Visual Activities Questionnaire ( ), the National Eye Institute Visual Function Questionnaire (NEI-VFQ) ( ), the Visual Disability Inventory ( ), the Visual Disability Assessment ( ), the Michigan Commission for the Blind Functional Assessment Scale ( ), and the Functional Assessment Self-Report Inventory ( ).


Some questionnaires use a mixture of self-report, and of the clinician grading the performance of the individual whilst actually carrying out some of the tasks (e.g. Functional Low-Vision Observer Rated Assessment (FLORA; ) and the Melbourne Low Vision ADL Index ( )).


However, some of the available instruments have been developed to evaluate medical treatments in clinical trials (e.g. the NEI-VFQ) or are disease-specific (e.g. MacDQoL ( ), the VF-14 ( ), or the Daily Living Tasks Dependent on Vision (DLTV) ( )). A number of these questionnaires are time consuming ( ) or have been designed for specific and likely treatable conditions ( ) and not to address the overall impact of visual loss in a general low-vision population ( ). The FLORA ( ), for example, was developed to assess treatment or vision restoration in people with ultra-low vision, blinded with retinitis pigmentosa.


As noted earlier, the original NEI-VFQ was validated for an adult population with common eye diseases ( ) but not specifically for a low-vision population. This questionnaire, however, has been used widely ( ) and for different age groups and degrees of visual loss ( ). An abbreviated version was also developed and validated (the 7-item NEI-VFQ) for use in evaluating the Welsh Low Vision Service ( ).


Questionnaires may also be validated for a specific population (e.g. hospital sample) and then used on a different one (e.g. community settings or primary care practice) ( ). The LVQOL questionnaire was validated for self-administration, as well as in-person or telephone interviews and was specially designed for a low-vision population. Generalisation and robustness are more likely when the questionnaires have been validated for several populations and different forms of administration.


Adaptation to Vision Loss


As discussed previously, there is often a section (subscale) in a general VR-QOL questionnaire which assesses the responder’s psychological state: their feelings and emotions (about their vision loss) and potential effects on well-being and relationships. These results should be kept separate from those related to practical activities and preferably dealt with in specific questionnaires.


The ‘Adaptation to Vision Loss’ (AVL) instruments (a 24-item and then a shortened 12-item version) were devised by for individuals with acquired vision loss. ‘Adaptation’ can be considered to be an acceptance of the condition (lack of denial), a willingness to explore rehabilitation strategies, and a healthy balance between independence and the acceptance of help ( ). Respondents have to give their level of agreement with statements such as ‘Visually impaired persons cannot afford to talk back or argue with family and friends’ and ‘It is too hard for older people to learn new ways of doing things (that compensate for vision loss) if they become visually impaired’.


The design of the Vision Core Measure 1 (VCM-1) questionnaire began by asking a very wide range of visually impaired individuals, ‘What are the main things that affect your quality of life as far as your eyesight is concerned?’ which received many very varied answers. From a pool of over 200 questions, the authors selected 10 questions. Despite many of the items referring to specific tasks, such as shopping or reading, the final items are much more about the emotional reaction to the loss. Responders are asked, for example, ‘How often have you worried about your eyesight getting worse?’ or ‘How often have you felt lonely or isolated because of your eyesight?


The 19-item Acceptance and Self-Worth Adjustment Scale (AS-WAS) ( ) was developed by using Rasch analysis of the 55-item Nottingham Adjustment Scale. It has questions on acceptance, self-efficacy, attitudes and self-esteem. Responders are asked to strongly agree or to strongly disagree with statements, some of which are phrased negatively and some positively. Examples are (in the self-esteem category) ‘I am able to do things as well as other people’ and (in the attitudes category) ‘People with my sort of visual problem feel that they are worthless’.


Measuring ‘Vision-Related Quality of Life’ in Children


Vision loss in early life has important psychological and functional implications ( ), and these affect QoL ( ; ). Questionnaires to measure QoL are a popular tool because they are simple to use, inexpensive, quick, do not necessarily require attendance and can be applied to general population groups ( ).


There are several questionnaires that have been used in different children populations. The LV Prasad-Functional Vision Questionnaire (LVP-FVQ) ( ) was developed to assess the functional abilities of children with VI in India. The authors performed an extensive literature review in order to find a list of vision-related tasks performed by children with minimal or severe VI. They also conducted focus group discussions, including paediatric ophthalmologists, children with VI, parents of children with VI, and low-vision therapists, to understand the difficulties that these children encounter in their daily activities. The instrument consists of 19 items covering different domains, such as distance vision (six questions), near vision (six questions), colour vision (two questions) and visual field (five questions). There is an additional item, the 20th question, which asks the children to relate their vision to that of their friends. Rasch analysis showed higher reliability for item difficulty parameters (0.93) than for person ability (0.65). The LVP-FVQ confirms good criterion validity by its capacity to differentiate between those individuals with different visual abilities (e.g. ‘seeing as well as’ their normally sighted friends/ ‘seeing a little worse’ than their friends/ ‘seeing much worse’ than their friends). The LVP-FVQ is a valid and useful tool to measure functional vision performance in children with VI. This questionnaire was designed to use in children from 8 to 18 years old and more suited for low to middle-income countries, because of the tasks described.


The Cardiff Visual Ability Questionnaire for Children (CVAQC) ( ) is a 25-item instrument designed to evaluate the visual ability in children and young people between 5 and 18 years old with VI living in high income countries. The development methodology was similar to the LVP-FVQ, where focus group discussions, with children and young people with and without VI, were used to select the initial items. The questionnaire was piloted with children and young people ( n = 45) with VI, and Rasch analysis was used to examine the response category function, as well as to facilitate selection of the final items. Validity and reliability were assessed on a group of visually impaired children ( n = 109) using Rasch analysis and ICC. The results showed excellent person separation (2.28), high reliability (0.84), with the items well targeted to the subjects (−0.40 logit between item and person mean) and good temporal stability (ICC = 0.89). In other words, according to the statistical analysis, the children can be well differentiated into distinct groups given their abilities, and this differentiation is maintained across time—that is, if the test is administered on two different occasions, a longer test gap would not necessarily lead to a lower correlation.


The Children’s Visual Function Questionnaire (CVFQ) ( ) was designed for very young children (i.e. ≤7 years old) and based on proxy answers to determine parents’ perceptions of treatment for the impairing conditions. This questionnaire was designed and developed in the United States.


The authors of the Impact of Visual Impairment on Children (IVI-C) questionnaire ( ), used input, for the focus groups, from teachers, occupational therapists, orientation and mobility instructors, parents and children. However, the psychometric properties of the questionnaire were not described. This questionnaire was designed (in the United States) to be used in children between 8 and 18 years old to address the emotional and functional impact of their VI.


Another questionnaire developed in the UK is the Functional Vision Questionnaire for Children and Young People with Visual Impairment (FVQ_CYP) ( ). This questionnaire consists of 36 items and was designed for children between 10 and 15 years of age. The questionnaire was designed using focus groups and qualitative data was collected from semistructured interviews. The data collected were based on children’s own perspectives of what it is like to live with VI. The items were pretested with 17 students with VI and piloted in 101 children with VI. The results were analysed with individual item response pattern, application of exploratory factor analysis, including parallel analysis and finally with Rasch analysis. According to the authors, this questionnaire is psychometrically robust, valid and reliable for the assessment of the self-perceived impact of VI on children and young people regarding the level of difficulty of performing vision-dependent activities. This questionnaire is expected to be a complementary measure to objective clinical assessments (e.g. visual acuity, contrast sensitivity, visual fields) and to other Patient Related Outcome Measures (PROMs), such as the Vision Quality of Life for Children and Young People (VQoL_CYP) questionnaire. The VQoL_CYP ( ) is a questionnaire to measure the emotional impact of vision loss in children and young people. This instrument was designed to understand the perceptions of the impact of living with a visual disability rather than focusing on the child’s ability to perform tasks or activities that require vision (functional status). Sometimes, in the literature, the concepts of functional vision and vision-related QoL are used interchangeably. Here, the authors show the differences between these two concepts and state that these questionnaires (the FVQ_CYP and the VQoL_CYP) can complement each other, to understand how loss of vision affects children’s ability to perform tasks which require vision (FVQ_CYP) and emotional status (i.e. psychosocial impact of vision loss) (VQoL_CYP). The VQoL_CYP is a 47-item scale designed for children between 10 and 15 years of age and it takes 15 to 20 minutes to administer.


Selecting a Questionnaire to Use


With so many vision-related questionnaires available, it can be difficult to decide which instrument to use for a specific research or clinical question. The authors recommend reading scientific papers in the same area to determine which questionnaires have been shown to respond to the population of interest. Instruments which have been scaled using Rasch analysis, and those with accurate reliability statistics, are generally preferred. Data on demographics for the population in which the questionnaire was developed should also be considered, because validity, responsiveness and reproducibility will not necessarily be the same for all populations.



References

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Jul 15, 2023 | Posted by in OPHTHALMOLOGY | Comments Off on Patient-Centred Outcome Measures

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