Background
The self-reported health-related quality of life of visually impaired persons is lower than that of their sighted peers [
1]. Visually impaired persons not only experience limitations in performing (instrumental) activities of daily living [
2]-[
6] but also show a loss of activities [
7]. Therefore, persons with vision loss experience restrictions in participation in society [
8]-[
11] and in maintaining independence and control [
12]-[
14].
In addition, persons with low vision show adverse mental health outcomes, such as feelings of social isolation [
15], emotional distress [
5],[
16] and depression [
17]-[
20]. Similarly, the prevalence of depression in persons with impaired vision is substantial. For example, international studies revealed that 26.9-33.7% of visually impaired older adults has depressive symptoms [
20]-[
23] versus 10-15% in the general elderly populations [
24]. In addition, visual impairment has been associated with lower (psychosocial) wellbeing, expressed by loss of interest and inability to enjoy activities [
25]. Indirectly, the adverse impact on mental wellbeing seems to increase the risk of mortality in persons with a visual impairment [
26].
Furthermore, visual impairment has also been associated with fatigue and with a higher probability of concentration problems during entertainment and reading [
25]. In addition, having low vision was found to be associated with lower levels of physical activity in leisure time [
27] and lower levels of self-reported performance in sports activities compared to a reference population of elderly [
8]. Also, persons with a visual acuity of ≤ 0.1 (Snellen) were reported to have significantly more problems with a disturbed sleep/wake rhythm and, subsequently, daytime somnolence which also affects the ability to perform daytime activities [
28].
These negative effects of sudden or progressive vision loss also need changes in lifestyle which, in turn, also affect psychological functioning [
29]. Although an acquired visual impairment usually causes initial reactions such as shock, denial and depression, there may be a period of adaptation resulting in acceptance of the unwanted situation [
30]. In an adjustment process, time seems to be an important factor [
31]. However, assessment of adjustment in people with established vision loss indicates that adjustment can be seen as a continuous process, rather than as a process with a definite endpoint [
32].This process may be influenced by positive or negative life events (e.g. death of a spouse, birth of a grandchild). Moreover, this process may be positively influenced by feelings of regaining control through having learned new skills (e.g. in rehabilitation programs) or by having received psychological counseling.
Rehabilitation for visually impaired persons often includes a prescription of assistive devices, such as magnifiers, canes or speech-enhanced devices. In the Netherlands, in addition to optometric services, most larger cities have a Multidisciplinary Rehabilitation Center (MRC) for visually impaired persons. MRCs provide additional rehabilitation interventions that focus on, for example, applying environmental changes (e.g. light adaptation at home/work), computer use, activities of daily living (e.g. cooking or self-care) and mobility. Interventions that focus on these latter topics may, indirectly, improve mental (health) aspects that are related to feelings, acceptance and fatigue. In addition, in MRCs, psychologists and social workers also provide group or individual counseling which focus more directly on mental wellbeing. Since there is evidence that mental health aspects (such as depression) may inhibit an optimal rehabilitation outcome [
29],[
33],[
34] and that better adaptation and adjustment to vision loss is significantly associated with fewer reported functional limitations and with greater improvement after low vision rehabilitation [
35], there is growing interest in the psychosocial aspects of vision loss as part of rehabilitation. A meta-analysis of qualitative studies revealed that acceptance of the situation, a positive attitude and social support facilitate the psychosocial adjustment [
36], it was advised that the emotional needs of individuals with vision loss should not be neglected and that patients should be referred to counseling and/or peer support groups.
In our previous paper, studying patient files, it was clearly visible that rehabilitation needs related to mental health were often not recognized as being a problem for the patient [
37]-[
39]. However, since a study in the Netherlands revealed that 29% of the visually impaired older persons (mean age 78 years, N = 274) entering a MRC showed depressive symptoms, and 7% had a depressive episode over the last year based on the DSM-IV criteria [
40], there is a growing awareness in Dutch MRCs that potential psychosocial needs should be investigated, addressed and monitored in visually impaired patients right from the start. In line with this, we developed an instrument to apply a more structured approach to systematically investigate and evaluate rehabilitation from the patient’s perspective which includes topics related to mental health. This new instrument was developed based on Massofs’ ‘Activity Inventory (AI) [
41]-[
45].The content of the AI was specifically developed for visually impaired persons across different eye conditions. It has a hierarchical structure in which ‘tasks’ (specific cognitive and motor activities, e.g. ‘place your signature’ or ‘fill in official forms, such as tax forms’) that serve a common purpose are categorized under umbrella (rehabilitation) ‘goals’ (e.g. ‘personal administration’). We translated, extended and adapted the AI [
37]-[
39]. Tasks that served a common purpose were put together and named after the goal they served. This process was data driven. Subsequently, all goals were structured according to the Activity and Participation domains of the International Classification of Function, Disability and Health (ICF) [
46]. The relevance to detect possible needs related to mental health aspects was recognized by patients, as well as by professionals involved in focus group discussions in the developmental phase of the D-AI [
37]-[
39]. Based on their input, an additional domain ‘Coping with mental (emotional) health aspects’ was added to the D-AI which includes the goals ‘Handle feelings’, ‘Acceptance’, and ‘Feeling fit’. It was decided that these goals were not categorized by the domain ‘General tasks and demands’ (i.e. chapter 2 of the ‘Activity and Participation’ domains of the ICF), which includes the topic ‘Handling stress and other psychological demands (other specified/unspecified)’ (d2408/d2409). Items in chapter 2 of the ‘Activity and Participation’ domains of the ICF focused primarily on stress, which did not properly reflect the items of the D-AI that showed up during focus group discussions. In addition, there was consensus (JEB, RMAvN and rehabilitation experts (n = 12)) that the goals ‘Feeling fit’, ‘Handle feelings’ and ‘Acceptance’ had to be mentioned separately, in the last part of the questionnaire, because of the emotional impact these questions may have on the patient. Therefore, a 10th domain (which is not covered by the “Activities and Participation” domains of the ICF) “Coping with mental (emotional) health aspects” was added to the D-AI.
In developing the D-AI, using qualitative techniques in the target population contributed to face and content validity for the D-AI. However, for a better interpretation of the scores, better understanding of the construct validity is also necessary. In this observational study, the D-AI was used to investigate the (longitudinal) interpretation of the concepts in the domain ‘Coping with mental (emotional) health aspects’. Although rehabilitation was not based on the D-AI in this validation study, the data allowed to understand the longitudinal outcomes in this domain in relation to rehabilitation programs followed in Dutch MRCs at 4 and 12 months after enrollment.
Discussion
This study evaluated the content of rehabilitation and longitudinal outcomes of ‘Coping with mental (emotional) health aspects’ (i.e. D-AI goals ‘Handle Feelings’, ‘Acceptance’ and ‘Feeling fit’) in a visually impaired population in relation to rehabilitation programs followed in Dutch MRCs, at 4 and 12 months after enrollment. In addition, for the newly developed D-AI used in this observational study, the (longitudinal) interpretation of the concept of ‘Coping with mental (emotional) health aspects’ was investigated using additional questionnaires measuring related or similar constructs (i.e. depression, adjustment to vision loss, and fatigue).
Observing the content of rehabilitation
Patient files revealed that, during the course of rehabilitation, assistive devices were prescribed or advised to the vast majority (80.5%) of the patients. In addition, 31.4% of the patients received other interventions (Table
3) between the start of rehabilitation and 12 months follow-up. It is remarkable that only a limited number of patients received help directly related to ‘mental health’. However, because for many patients rehabilitation was not yet finished at 12 months follow-up (24.4%), the interventions reported may be incomplete or unfinished.. In addition, as rehabilitation needs were investigated retrospectively, we had to rely on information in the patient’s file; however, these files may not always have been up to date. In addition, it was impossible to link specific interventions to the goal(s) they were supposed to target, as this was not specifically documented. For a better evidence-based practice, transparent documentation of delivered care, a systematic evaluation of rehabilitation needs immediately after enrollment as well as over time, is essential to gain better insight into the effectiveness of rehabilitation [
39]. The D-AI seems a promising tool to investigate and evaluate rehabilitation needs over time and to clearly define rehabilitation goals before the start of rehabilitation; however, its use may be further improved when the content of rehabilitation is well documented.
Interpretation of the constructs being measured
‘Feeling fit’ and physical fatigue
As all hypotheses for the goal ‘Feeling fit’ were accepted, it seems that not only the goal but also its underlying tasks are strongly associated with the additional (physical) fatigue scale. However, both constructs represent a slightly different concept as baseline characteristics for participants and patients who were lost to follow up differed on the SFQ scale (i.e. patients who were lost to follow-up showed much more physical fatigue at baseline compared to respondents), but did not for the D-AI ‘Feeling fit’ scale. Underlying tasks of the ‘Feeling fit scale’ typically represent difficult items for visually impaired persons (as revealed from focus group discussions), providing better insight into vision-related fatigue problems compared to the ‘physical fatigue’ of the SFQ. However, as feedback from assessors revealed that the formulation of the goal question was difficult to understand, we previously suggested to change the formulation of the ‘Feeling fit’ goal question to: “
Some visually impaired persons experience problems with fatigue, concentration, burden, and how to balance energy levels. How important/difficult is this theme for you?” (see Appendix in [
47]). As data collection in the current study had already started, this new formulation should be tested in the future.
‘Handle feelings’ and depression
Correlations for ‘Handle feelings’, indicate that the difficulty of tasks represents the difficulty of the umbrella goal ‘Handle feelings’. Moreover, the construct being measured is moderately (i.e. for tasks) to highly (i.e. for goals) related to depressive symptoms (CES-D). However, the construct of the umbrella goal is similarly related to depressive symptoms (CES-D) and adaptation to vision loss (N-AVL-12). In line with this, data at baseline revealed that patients who were lost to follow-up had more difficulty with ‘Handle feelings’, showed more depressive symptoms (CES-D) and less adaptation to vision loss (N-AVL-12) than respondents. An explanation that ‘Handle feelings’ was related to the CES-D as well as the N-AVL-12 in a similar way, may be that the D-AI does not investigate the feelings themselves, but how the patient is coping with these feelings (i.e. ‘How difficult is it for you to handle your feelings about your visual impairment’), which seems to rely on both constructs, i.e. depression and adaptation.
‘Acceptance’ and adaptation to vision loss
Correlations within the goal ‘Acceptance’ indicate that the difficulty of ‘Acceptance’ tasks only moderately reflect the difficulty of the umbrella goal. Moreover, it seems that the construct measured by these underlying tasks is essentially different compared to the construct measured in the additional ‘adaptation’ scale (i.e. N-AVL-12), whereas goal difficulty of ‘Acceptance’ showed strong correlations with this additional scale. This may support the interpretation that these tasks represent a different construct compared to the goal question; the umbrella goal may represent a more intrinsic feeling of acceptance in which time is an important factor. In contrast, not only difficulty of the ‘Acceptance’ goal but also of its underlying tasks did not reveal any difference at baseline between respondents and those who were lost to follow-up, whereas the N-AVL-12 scale indicated that respondents had a better adaptation to vision loss. The N-AVL-12 focuses more on attitudes towards coping strategies and coping style and not so much on the patient’s ability to perform coping strategies with regard to the visual impairment. This may have caused the baseline differences; patients who were lost to follow-up felt less adapted, possibly (partly) due to their lower health status (Table
2).
Emotional health aspects
Our previous study [
47] revealed that some patients did not understand the difference between the goals ‘Handle feelings’ and ‘Acceptance’ (as formulated in Table
1). Therefore, after consensus based discussions, it was decided to merge both underlying subscales into one umbrella goal ‘Emotional life aspects’, which covers both scales [
47]. As the correlation of the two underlying scales (i.e. the items related to ‘Handle feelings’ and to ‘Acceptance’) with the goal question of ‘Handle feelings’ was stronger compared to the correlation with the ‘Acceptance’ goal question, the formulation of the new goal was more similar to the ‘Handle feelings question’. However, the words ‘handle your feelings’ were replaced by ‘handle your emotional life’, to make it applicable to both underlying scales: “
How important/difficult is it for you to handle your emotional life concerning your visual impairment?” (see Appendix in [
47]). Results of the current study support further investigation of this new approach.
Longitudinal interpretation and outcomes
Opinions on what is of value for a particular patient with regard to ‘Coping with mental (emotional) health aspects’, seemed to be relatively stable over time. Perceived importance scores remained unchanged for all three goals between baseline and follow-up. This is in line with previous findings on the importance scores of goals in the ICF domain ‘Learning and applying knowledge’ (Goals: ‘Reading’, ‘Writing’, and ‘Watching TV’) [
47]. The importance of goals probably mainly depends on a patient’s personal factors. However, changes in other factors represented in the ICF framework (i.e. health status or external factors) may also influence the importance of goals for an individual. To evaluate the effectiveness of a specific rehabilitation intervention, a recurrent assessment of importance questions may not be useful. However, to assess needs and compose a rehabilitation plan, the relevance of rehabilitation goals for a particular person should be considered.
‘Handle feelings’ and depression
In general, perceived difficulty to handle feelings (i.e. at both the goal and task level) did not change over time. For uncorrected models, depressive symptoms changed over the first 4 months of rehabilitation; however, this effect disappeared when correcting for educational level and general health status. In addition, treatment did not interfere with perceived difficulty of ‘Handle feelings’, or with depressive symptoms. Burggraaff et al. found similar results on prescription of CCTVs and the effects of training on how to use the device in Dutch MRC [
61].
An investigation of low-vision rehabilitation services in the USA revealed that 88% solely offer optical aids with basic training, while psychological services and support groups are offered to 21% and 28%, respectively [
62]. In the current study, patient files showed that psychological or psychosocial-related care was applied less frequently; this seems rather low when considering the number of patients with depressive symptoms and high priority scores for the goal ‘Handle feelings’. In a randomized clinical trial, a self-management program resulted in a reduction of depressive symptoms [
63]-[
65]. Also, a pilot evaluation of a self-management program for low vision revealed that the program had a positive impact on participants’ mood and their ability to manage the challenges of low vision [
66]. Moreover, Rovner et al. reported that patients with age-related macular degeneration benefitted from problem solving therapy [
67],[
68]. In addition, it was found that an integrated mental health and low vision intervention halved the incidence of depressive disorders compared to standard outpatient low vision rehabilitation [
69]. These results suggest that counseling can be effective and supports the need to further apply and investigate the effectiveness of interventions that focus on mental health in Dutch MRCs [
70] and visual rehabilitation clinics in the UK [
71], as well as to study a new care model for integrated depression management in Australia [
72].
‘Acceptance’ and adaptation to vision loss
Longitudinal outcomes revealed that perceived difficulty of the umbrella goal ‘Acceptance’ decreased over time. However, the underlying ‘Acceptance’ scale and the adaptation to the vision loss scale (N-AVL-12) were unchanged. As was suggested based on the correlations, the umbrella goal ‘Acceptance’ might represent, another, more general/intrinsic feeling of acceptance in which time is an important factor, i.e. getting used to the idea that being visually impaired will not change, whereas the underlying ‘Acceptance’ scale remains stable because patients do not (yet) incorporate the adaptation in their daily routines. For instance, a patient may still experience the same difficulty to ‘dare to ask for help from persons you know’, but has accepted this as a fact.
Another study using item response models showed that the adjustment measured by the ‘LVQOL-adjustment’ scale had improved in a cohort of visually impaired persons 5 months after baseline but had disappeared after one year [
73]. However, this ‘LVQOL-adjustment’ scale represents a slightly different concept, as this scale includes items such as ‘understanding the eye condition’ and ‘visiting friends and family’.
Looking at the content of rehabilitation more specifically, it seems that providing ‘information or advice and education’ resulted in a lower perceived difficulty of tasks underlying the goal ‘Acceptance’. However, it is remarkable that the N-AVL-12 did not detect any change. A closer look at the exact content of the items in the scale ‘Acceptance’ (which encompasses items such as ‘explain to others what you can and cannot see’) may explain the effect of the intervention measured by the ‘Acceptance’ scale; patients receiving ‘information or advice and education’ may be taught how to adapt to the vision loss in specific situations. Since better adaptation and adjustment to vision loss has been significantly associated with greater improvement of vision-related activity limitations after low vision rehabilitation [
35], future research should focus on how to further improve adaptation to vision loss.
‘Feeling fit’ and physical fatigue
Longitudinal outcomes of ‘Feeling fit’ revealed that perceived difficulty of the goal decreased between baseline and 4 months follow-up. In addition, in the same period a decrease in perceived difficulty of tasks underlying the goal ‘Feeling fit’ was borderline non-significant. However, after correcting for education and general health status, the umbrella goal, as well as the tasks underneath ‘Feeling fit’, were not significant. In contrast, (physical) fatigue measured by means the SFQ decreased significantly over the same period, also after correcting for confounders (i.e. education, general health status, gender). It seems contradictory that longitudinal changes were different for these outcome measures. A possible explanation is that (as became clear from feedback from assessors in our previous study [
47] using the same baseline data as the current study) the goal question of ‘Feeling fit’ was unclear (i.e. it was reported (unpublished data) that ‘How fit do you feel’ would be clearer than ‘How difficult is it for you to feel fit’), however, this would have resulted in different response options compared to the rest of the D-AI. Underlying task questions were reported to be clear. As the content of the D-AI was specifically developed by and for visually impaired persons [
37], the underlying ‘Feeling fit’ tasks clearly are vision-related (see Table
1). Another reason why perceived difficulty of ‘Feeling fit’ scale remained unchanged may be that these items partly depend on other concepts, such as ‘physical pain’ (e.g. ‘perform your daily activities without suffering from discomfort in the eyes (e.g. eye strain)’), ‘mobility’ (e.g. ‘go on the road without getting too tired’), and/or ‘mental fatigue’ (e.g. ‘stay focused and concentrated’). In addition, it is possible that patients reported the same perceived difficulty several months after baseline, but in fact performed more daily activities and increased their activity level (also causing weight loss and, in turn, increased fitness) as a result of rehabilitation. It was reported that the reciprocal relationship between activity loss and psychological wellbeing in people with vision impairment means that rehabilitation programs have the potential to be more powerful if both practical skills and psychological factors are addressed concurrently [
7]. MRCs may integrate this in their trajectory. In addition, MRCs may offer and/or stimulate visually impaired persons to do more physical training as this increases physical fitness [
74] and mental health [
75]. As the number of publications related to fatigue in a visually impaired population is limited, use of the D-AI and the results of the current study may make a significant contribution to the literature.
Study limitations
For most interventions no interference was detected, suggesting that the effect of rehabilitation on mental health aspects was only limited. However, these results should be interpreted with caution as only a few participants were available per treatment. Moreover, baseline characteristics of patients who were and were not lost to follow-up showed a significant difference; therefore, missing data at follow-up should not be considered to be ‘missing at random’ as was assumed in the model. The analyses applied may have caused an underestimation (or overestimation) of the improvement of the difficulty of goals and tasks in this domain. A part of the discrepancy between change patterns in goals and underlying tasks may also be explained by the routing structure, as questions at the task level were rated by only a selection of the participants that rated the goal difficulty question. Moreover, based on the current study design, it is uncertain whether a specific intervention was appropriate and whether it actually caused the improvement. Patients were not randomized into a treatment or control group, but were simply observed during their individual rehabilitation trajectory. Finally, longitudinal measures were interpreted on the assumption that the D-AI was responsive to change, but this assumption might be incorrect. Future research with respect to invariance of measurement is necessary. Although we compared longitudinal measurements in the D-AI with similar constructs, these measures should not be seen as a gold standard. In addition, the number of challenging and specific a priori hypotheses was limited, which increases the risk of bias as it is tempting to reflect on alternative explanations retrospectively [
76]-[
78]. The longitudinal validity, as well as the clinically important change, should be investigated more specifically; the current study was not designed for this purpose. Moreover, the mean difficulty scores of tasks in the D-AI domain related to ‘Mental health’ were usually at the bottom of the scale. This may have caused floor effects, resulting in relatively little room for improvement. However, as the current sample not only contains patients with problems related to mental health, these floor effects are probably less profound in a sample of patients especially recruited because of their problems related to mental health.
Conclusions, clinical implications and future research
Based on the current results and of our previous study [
47], some adaptations were made to the domain ‘Coping with mental (emotional) health aspects’ of the D-AI. These changes need to be investigated more thoroughly. When more data become available, we will apply additional analyses (e.g. using item response models) to further improve the validity, reliability and interpretability of the newly formulated questions of the D-AI.
Baseline scores for the additional domain ‘Coping with mental (emotional) health aspects’ of the D-AI underscore that visually impaired persons experience mental health problems related to their vision loss and that they might need and want help for this. In addition, although it is possible that the effect of rehabilitation was not yet fully achieved as rehabilitation was not yet finished for many patients, longitudinal outcomes showed only limited improvement on ‘Acceptance’, which should at least partly be attributed to a natural adaptation to vision loss. Other goals and tasks remained unchanged. These results indicate that MRCs should pay more attention to problems related to mental health. The D-AI may help to recognize needs related to mental health from the very start by asking patients more directly about their vision-related mental health. Moreover, the detailed tasks of the D-AI may facilitate the monitoring of mental health status over time in relation to vision loss.This was an important reason for Dutch MRCs to start using the D-AI as part of the standard assessment of rehabilitation needs intake and evaluation procedure. In addition, evaluation of the effectiveness of new rehabilitation interventions related to mental health aspects is also warranted. The D-AI can be useful to study newly developed rehabilitation strategies to refer patients to the right rehabilitation trajectory and to monitor outcome with respect to vision-related mental health outcomes. However, the D-AI mental health scales serve a different purpose compared to psychological diagnostic scales that are already available.
Acknowledgments
Financial support for this study was provided by ‘ZonMwInZicht’ (Netherlands Organization for Health Research and Development–Insight Society; Grant no. 943-04-001), The Hague, the Netherlands. Additional financial support was provided by ‘StichtingNederlandsOogheelkundigOnderzoek’ (SNOO). The sponsors of the study had no role in the design and performance of the study, the data collection, data analysis, data interpretation, or writing of the report.
Privacy statement
I confirm that all patient/personal identifiers have been removed or disguised so the patient/persons(s) described are not identifiable and cannot be identified through the details of the story.
Grant information
Financial support for this study was provided by ‘ZonMwInZicht’ (Netherlands Organization for Health Research and Development–Insight Society; Grant no. 943-04-001), The Hague, the Netherlands. Additional financial support was provided by ‘StichtingNederlandsOogheelkundigOnderzoek’ (SNOO).
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
JEB made substantial contributions to conception and design, acquisition of data, analysis and interpretation of data, and was involved in drafting the manuscript. GHMBvR made substantial contributions to conception and design and in revising the manuscript for important intellectual content. MF made substantial contributions to the data analysis and revising the manuscript for important intellectual content. DLK made substantial contributions to data analysis and to interpretation of data. RMAvN made substantial contributions to conception and design, and was involved in drafting the manuscript. All authors have approved the final version to be published.