What explains health in persons with visual impairment?

Visual impairment (VI) is defined as blindness or low vision[1] and is associated with important limitations in functioning[2, 3]. Psychological distress, difficulties in activities of daily living (ADL) and low health-related quality of life have consistently been reported in persons with VI (PVI)[4‐10]. To assess these limitations comprehensively the patient perspective has to be taken into account. In ophthalmology traditional objective clinical measures, such as best corrected visual acuity (BCVA), are being complemented by the assessment of patients’ perception of their visual function, functioning in general and quality of life[11]. Generic patient-reported outcome measures, such as the Medical Outcome Study Short Form 36 (SF-36)[12], EuroQoL-5D (EQ-5D)[13], utility values, such as the time trade-off and standard gamble, and condition-specific patient-reported outcome measures, like the Visual Function 14-item Scale (VF-14)[14] and the Activities of Daily Vision Scale (ADVS)[15], the Daily Living Tasks Dependent on Vision (DLTV)[16] and the National Eye Institute Visual Function Questionnaire (NEI VFQ)[17], have been used to address functioning and quality of life in PVI[18‐28].

There is little standardisation regarding the use of these outcome measures making comparisons among studies difficult. However, for the comparison of study outcomes calculation of effect sizes or structural equation modelling, as well as mapping the outcome measures used in these studies to the International Classification of Functioning, Disability and Health (ICF)[29] can be applied. Studies using patient-reported outcome measures typically only cover selected aspects of the whole experience associated with VI. Generic, as well as vision-specific, health-status measures and health-related quality-of-life instruments also vary considerably regarding the concepts included[30‐32]. It is also important to recognise that these instruments have been developed to measure the consequences of VI without sufficiently taking into account the influence of environmental and personal factors as defined by the ICF. However, selected personal and environmental factors (e.g., age, gender, use of assistive devices) have often been assessed as potential confounders in intervention studies focusing on rehabilitation in PVI or in cohort studies[33].

The ICF adopted by the World Health Organisation (WHO) in 2001 relies on a globally accepted framework for classifying problems in functioning and the influence of contextual factors, such as environmental and personal factors. Its comprehensive perspective, including biological, individual and social aspects of health, enables the ICF to describe the whole health experience of PVI (see Figure 1). The perspective that served as a basis for the development of the ICF rests upon a bio-psycho-social perspective, i.e. it covers functioning and disability with its components Body Functions and Body Structures, Activities and Participation, as well as Personal and Environmental Factors. The classification contains a total of 1424 ICF categories allotted to these components. The component Personal Factors has not yet been classified. According to WHO’s definition ICF categories are “mutually exclusive, i.e. no two categories at the same level share exactly the same attributes” (p. 211;[30]), and organized in a hierarchic structure with up to four levels. However, the mutual exclusivity assumption of some ICF categories is now under discussion[34]. Each category is denoted by a code composed of a letter that refers to the components of the classification (b: Body Functions; s: Body Structures; d: Activities and Participation; e: Environmental Factors) and is followed by a numeric code starting with the chapter number (one digit) and followed by the second level (two digits) and the third and fourth levels (one digit each) of the classification (see Figure 1). A higher-level category shares the attributes of the lower-level category to which it belongs, i.e., the use of a higher-level category (b2102 Quality of vision) automatically implies that the lower-level category is applicable (b210 Seeing functions).

The open question is the extent to which the ICF could be used to comprehensively describe the problems in PVIs’ functioning. It could also help in clinical practice and research to select ICF categories that are most relevant for PVI. Since functioning is the operationalization of health from WHO perspective and in the context of the ICF the subjective perception of PVIs’ health seems to be the most appropriate external standard to perform such a selection. The objectives of this study are, therefore, (1) to analyze whether the ICF can be used to comprehensively describe PVIs’ functioning and the environmental factors that influence their lives and (2) to select the ICF categories that best capture PVIs’ self-perceived health.

A broad range of Body functions, Body structures, aspects of Activities and Participation and Environmental factors relevant in PVI were identified in this study. It has been shown that the ICF can be used as a framework to comprehensively describe the problems in functioning of PVI and the Environmental factors which influence their every-day lives. A set of 13 ICF categories was selected by using Group Lasso regression that best capture self-perceived health of PVI.

First, we would like to discuss the ICF categories that can be used to describe functioning and environmental factors of PVI. It stands out that the ICF categories identified in this study cover a broad range of functioning and disability and affect nearly every aspect of daily living as has been described in former publications[51, 52]. Besides the obvious impairments in seeing and seeing-related functions, b280 Sensation of pain and mental functions, such as b126 Temperament and personality functions and b130 Energy and drive functions, were reported by more than a third of the study population. This is in line with previous findings reporting that psychosocial factors, such as depression and personality, affect PVIs’ performance and quality of life[53‐57].

Activities-and-Participation categories that were identified as limited or restricted most commonly address aspects of communication (e.g., d325 Communicating with – receiving – written messages, d345 Writing messages, d170 Writing, d110 Watching, d166 Reading and d315 Communication with – receiving – nonverbal messages). Reading has not only been described as limited in PVI, but has also been used as a measure for functioning and quality of life[58], whereas limitations in writing have seldom explicitly been stressed in the literature even though writing is addressed in several patient-reported outcomes (e.g., functional ability Quality of Vision (faVIQ)[59], Low Vision Quality-of-life Questionnaire (LVQOL)[60], VF-14). Furthermore, activities from the chapters d4 Mobility (e.g., d475 Driving, d460 Moving around in different locations and d470 Using transportation) and d6 Domestic life (e.g., d650 Caring for household objects, d620 Acquisition of goods and services) were identified as limited by more than two thirds of the study participants. These findings are consistent with the literature[61, 62] but offer more precise examples of limitations in every-day activities or restrictions in participation.

With this study we also identified several Environmental factors influencing PVIs’ lives. Up to now, there has been very little research on environmental factors and VI. Taking into account that all categories in the Extended ICF Checklist were reported along with the frequencies with which study participants reported them, the lack of research becomes even more apparent. It should be mentioned that PVI reported far more facilitators than barriers. Facilitators, such as e125 Products and technology for communication, e130 Products and technology for education and e115 Products and technology for personal indoor and outdoor mobility and transportation, emphasise the importance of adequate vision aids, magnifiers, big-buttoned telephones, talking clocks, canes[63]. This result also underlines the importance of vision-related technology and assistive devices in the rehabilitation process of PVI. Study participants reported noise to be misleading when participating in traffic, even as a pedestrian and in winter. For instance, snow can present an insurmountable obstacle due to its noise-reducing effect and by blurring existing boarders such as kerbs as highlighted by several study participants. These are just two possible reasons why the categories e250 Sound and e225 Climate constitute two of the three most common barriers reported by the study participants. Categories in chapters e3 Support and relationship, such as e355 Health professionals, e310 Immediate family and e320 Friends, as well as e4 Attitudes of the very same people, were also reported to be facilitators by more than two thirds of the study population. Furthermore, there are plenty of categories that have been reported to be barriers as well as facilitators, like e150 Design, construction and building products and technology of buildings for public use, e155 Design, construction and building products and technology of buildings for private use, e580 Health services, systems and policies or e585 Education and training services, systems and policies. This indicates that public services which are employed to improve every-day lives of visually impaired and blind individuals are underachieving.

The results of our study show that the ICF can be used to comprehensively describe problems in functioning of PVI and environmental factors influencing their lives. About 40 percent of the participants mentioned additional issues after the assessment of the Extended ICF Checklist. However, the majority of these issues were covered by the ICF (third-level categories, Personal factors). There was only one additional category that was labelled as ‘not covered’ by the ICF which referred to time-related aspects (‘Needing more time to accomplish daily activities’).

Second, we like to discuss the selected ICF categories that best capture PVIs’ self-perceived health. When discussing this topic it is important to realize that the ICF categories selected by using Group Lasso regression often do not include the categories that have been selected most commonly as impaired, limited, restricted or as a barrier or facilitator. Since all of our study participants were visually impaired, the categories b210 Seeing functions and d166 Reading, for example, were qualified as severe or complete impaired in all study participants. These categories besides others could not be selected applying regression analysis, as only categories showing variation can explain differences in self-perceived health. However, it is obvious that these aspects of functioning are highly relevant in patients’ every-day lives and as intervention goals in rehabilitation. Applying the Group Lasso regression the majority of the selected categories (n = 13) was derived from the component Activities and Participation. It has been previously reported that VI leads to restrictions in participation[64, 65, 41, 28] which is defined as problems that an individual may experience in his/her involvement in life situations[32]. Activities-and-Participation categories showing the highest values of beta estimators in the Group Lasso regression were d620 Acquisition of goods and services and d750 Informal social relationships. The latter correlates well with the findings in the component Environmental Factors and will thus be discussed later on. It is interesting that the Centre for Eye Research in Australia ranked the ‘Household and Personal Care’ domain low in order of difficulty, acting on the assumption that familiarity with the household environment makes the tasks easier to perform[41]. Existing outcome measures, such as the VFQ-25, include questions on single tasks, e.g., reading small print and going down stairs at night[19], but hardly include items that need a combination of skills. The category d620 Acquisition of goods, which was not only reported as limited by 83 percent of PVI, but also has a high beta estimator, requires a combination of skills, such as reading print and moving around in different locations. It seems that existing outcome measures have not been able to grasp the difficulty of every-day life by keeping the questionnaires short and practical. In accordance with these considerations, d220 Undertaking multiple tasks is also one of the selected ICF categories that best captures PVIs’ self-perceived health.

Although ICF categories from the component Activities and Participation have been selected most frequently, the Body-Functions categories are the ones which have the greatest effect on self-perceived health of PVI, showing the highest beta estimators in the Group Lasso regression. One of these categories is b220 Sensations associated with the eye and adjoining structures that includes sensations of tired, dry and itching eye and related feelings. A complete impairment of this body function results in a possible decrease of more than 11% on the self-perceived health scale of the EQ-5D. However, no literature on this subject can be found. Looking at VI-specific measures, the VFQ-25 includes a question regarding this body function, but the VF-14, the DLTV and the ADVS do not address this subject. These findings indicate that the degree to which sensations associated with the eye are related to PVIs’ self-perceived health has been underestimated or undetected so far. The high beta estimator of category b126 Temperament and personality functions, which includes functions of extra- or introversion, agreeableness, conscientiousness, openness to experience and psychic stability, coincides with current literature.

The Environmental factors selected as facilitators or barriers when explaining self-perceived health in PVI mostly address personal relationships. The Blue Mountain Eye Study showed that visually impaired persons are more likely to use support than persons with good vision[66]. In accordance with these results, we found support of e325 Acquaintances, peers, colleagues, neighbours and community members to be associated with self-perceived health in PVI. It is conspicuous that the latter category is always associated with a positive beta estimate and, therefore, always increases self-perceived health regardless of whether the category has been reported as a barrier or a facilitator. We hypothesize that social interaction as such is more important than the kind of support. Thus, being involved in social interactions with others and getting support from others seem to increase self-perceived health regardless of the quality of these interactions and the appraisal of the received support as hindering or supportive factor.

We want to point out that the mean self-perceived health score of PVI adds up to 59 points, and the subgroup of blind individuals scores about 71 points. This might be due to the fact that study participants of this group were approximately 17 years younger than the entire study population. According to the Group Lasso regression this would account for an increase of 5.8 points on the self-perceived health scale of the EQ-5D. Additionally, blind individuals have been living with their diagnosis for about 14 years longer compared to the total sample of participants, which would cause a further increase of 3.9 points. This, however, does not explain the differences among the subgroups. One possible explanation for this phenomenon might be that most of the blind individuals had coped with their loss of vision over their lifetimes to a greater extent than individuals experiencing progressive visual-functioning problems.

Preliminary work on a ICF-based content comparison of existing vision-related patient-reported outcomes has shown that most of the selected categories, except for b220 Sensations associated with the eye and adjoining structures and e125 Products and technology for communication, that best explain self-perceived health of PVI are not taken into account in commonly used questionnaires (e.g., VF-14, NEI VFQ, DLTV, ADVS)[67]. Che Hamzah and colleagues already published a systematic review on vision instruments mapping these instruments to the components of the ICF. However, a detailed ICF-based analysis is still missing[32]. Thus, it might be worthwhile to examine and compare the content of existing instruments using the ICF as a reference and taking into account the ICF categories selected in this study. Depending on the results of this comparison it possibly might be necessary to re-evaluate some of the questionnaires or even to develop a new ICF-based questionnaire addressing the areas of functioning identified in this study. Massof and colleagues[68, 69], and even more consequently Bruijning and colleagues[62, 70] already developed an ICF-based instrument, namely the Activity Inventory and the Dutch ICF Activity Inventory, respectively, providing a goal attainment approach for rehabilitation of PVI. Both instruments assess the difficulties of specific tasks – covering the ICF categories of the Activities and Participation component – that belong to goals relevant from the patient perspective.

In addition, the results of this study can be used as part of the revision process of the ICD-11. A newly developed axis called “functioning properties” serves as a link to allow for joint usage of the ICD and the ICF. These functioning properties are proposed to be included in the ICD revision process[71]. Therefore, these results may provide a valuable contribution to pinpointing the most important aspects of functioning in PVI which can be compared to functioning properties used in the revision process of the ICD.

The results of this study can also be used to create a functioning profile for PVI as shown in Figure 2. It consists of the ICF categories selected in the regression analysis and of ICF categories considered a problem by more than 90 percent of PVI in the descriptive analysis. The categories included in this functioning profile can serve as a checklist for problems PVI may experience in their every-day lives, as well as environmental factors relevant to them. This functioning profile, therefore, provides a useful guide for the planning, follow-up and reporting of health-care interventions[72]. This approach might be seen in line with the perspective of personalized medicine aiming to tailor medical decisions, practices, and/or products to the individual patient.

This study has some limitations which should be mentioned. One limitation is the sample size of 105 patients. However, Gertheiss and colleagues assume that a sample size of 105 participants is sufficient to conduct Group Lasso regression analyses[36]. Nevertheless, the results of this study should be interpreted with caution; we recommend to conduct further studies with larger samples using Group Lasso regression analyses. There was only one study centre located in Germany. Further studies in other countries are needed to validate the results of this investigation. Patients filled in the EQ-5D before or after the interview. We are aware that this could have affected the rating on self-perceived health. Recoding the qualifier “9” (not applicable) to “0” (not impaired, limited or restricted; no facilitator/barrier) might be worthwhile to discuss. We used this proven recoding strategy[45, 73] for example for study participants who were unemployed because of their health condition or were (early) retired when coding d850 Remunerative employment.

The ICF can be used as a framework to comprehensively describe PVIs’ problems and the environmental factors which influence their lives. In light of existing approaches to develop ICF-based outcome measures in the field of VI it would be worthwhile to bring together the results of this study with research already performed in this field. We highly recommend to start with the mapping of existing VI-specific outcome measures to the categories of the ICF to facilitate the comparison of outcome measure used in research and rehabilitation.

The responsibility for the content of this publication lies with the ICF Research Branch.