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The relationship between work and health in persons with usher syndrome type 2.

Persons with deafblindness exhibit a complex variation in diagnosis and onset, as well as in auditory and visual abilities. Recent research has shown that persons with deafblindness have additional physical and psychological health-related problems (Wahlqvist, Moller, Moller, & Danermark, 2013). In this study, we have focused on persons with Usher syndrome type 2 (USH2) and their health-related problems from a work-life perspective.

Access to the labor market is a great challenge for persons of working age with disabilities such as deafblindness. The UN convention on the Rights of Persons with Disabilities (Article 27) recognizes their right to work on an equal basis with others, which implies inclusion and accessibility (United Nations, 2006). It also states that governments should promote realization of the right to work.

The international Organization for Economic Co-operation and Development (OECD) strongly emphasizes the importance of focusing on the inclusion of persons with disabilities in working life. Figures presented by the OECD show that more and more persons with disabilities rely on disability benefits (OECD, 2009a, 2009b). In a Swedish context, the government has stated that employment is the most important factor for participation in and contribution to society (Myndigheten for delaktighet [Swedish Agency for Participation], 2014b). The Swedish welfare state aims to provide supported employment for persons with disabilities (Gustafsson, 2014). Nevertheless, in 2013 persons with disabilities were employed at a substantially lower rate than the general population, 55% compared to 79% (Myndigheten for delaktighet [Swedish Agency for Participation], 2014a).

The relationship between unemployment and health has been studied extensively. Studies have demonstrated a close correlation between unemployment and increased risk of morbidity and mortality (Bambra & Eikemo, 2009; Dorling, 2009). Furthermore, a meta-analysis of published results revealed that unemployment correlates strongly with poor psychological health (Paul & Moser, 2009). An indicator of this relationship is the fact that in countries where the rate of unemployment increases there is a significant rise in suicidal behavior (Nordt, Warnke, Seifritz, & Kawohl, 2015; Stuckler, Basu, Suhrcke, Coutts, & McKee, 2009).

Persons with deafblindness

Deafblindness, sometimes referred to as dual-sensory loss, includes a complex variation in diagnosis and onset, as well as auditory and visual abilities. The Nordic definition of deafblindness is as follows: "Deafblindness is a distinct disability. Deafblindness is a combined vision and hearing disability. It limits activities of a person and restricts full participation in society to such a degree that society is required to facilitate specific services, environmental alterations and/or technology" (Nordic Centre for Welfare and Social Issues, 2007).

Usher syndrome is the most common cause of deafblindness (Moller, 2003), in addition to being the most common syndromal hearing loss disorder. It is an autosomal recessive disorder that affects hearing, vision, and in some cases vestibular function (Moller, 2003; Pennings, 2004; Sadeghi, 2005). The prevalence of Usher syndrome in Sweden is estimated at 3.3 per 100,000 people (Sadeghi, Kimberling, Tranebjoerg, & Moller, 2004).

Usher syndrome type 2 (USH2) is characterized by a congenital moderate-to-severe hearing impairment. The visual loss is due to a retinal disorder, retinitis pigmentosa, which is an umbrella term for various disorders that cause retinal degeneration (Hartong, Berson, & Dryja, 2006). The vision loss in retinitis pigmentosa is characterized by contrast sensitivity, light sensitivity, impaired adaptability to light, night blindness, visual field limitations, and impaired visual acuity. It is progressive, resulting in severely impaired vision in adulthood (Kimberling & Moller, 1995), and is the most common form of Usher syndrome in most countries. In Sweden, however, USH1 is as common as USH2 (Sadeghi et al., 2004; Leijendeckers, Pennings, Snik, Bosman, & Cremers, 2009).

Moller (2008) has shown that due to the functional limitations in hearing and vision, persons with deafblindness are more prone to difficulties in accessing information and in face-to-face interaction with other people. A consequence of this is isolation, social exclusion, and restriction in terms of activity, as well as increased physical risk. {Afari, 2003 #1}

In two preliminary reports by Olesen and Jansboel (2005) and Ellis and Hodges (2013), persons with Usher syndrome and work were discussed. To the best of our knowledge, there is only one report (Wahlqvist et al., 2013) focusing on health-related problems among persons with USH2 in which it was demonstrated that they had significantly poorer psychological and physical health compared to the general population in Sweden. However, there were differences within the USH2 group, since some individuals reported better health than others (Wahlqvist et al., 2013). Environmental factors such as employment status, family situation, and other life conditions have not yet been explored.


The aim of this study was to explore the relationship between working and disability pension groups and physical and psychological health in persons with USH2.



At the time of the study, the Swedish Usher database comprised approximately 84 persons (aged 18 to 65 years) with USH2. The database contains data on hearing, vision, balance, and genetics (C. Moller, personal communication, 2014).

All 84 persons with USH2 were invited to participate. The response rate was 67 out of 84 (80%). Of the total sample of 67 persons, 34 were working (working group) and 33 had a full (that is, 100%) disability pension (disability pension group) (see Table 1). The mean age of diagnosis was 24.6 years.

All participants signed informed consent forms before taking part in the clinical and genetic research. The research was approved by the Ethics Committee of Linkoping University Hospital (1990, 1997) and the Institutional Review Board of the Boys Town National Research Hospital, in Omaha, Nebraska (1990, 1997).


The Usher database contains visual, audiological, vestibular, and genetic data on all 84 subjects (participants and nonparticipants) who were invited to the study. These 84 subjects have at different occasions participated in other studies. The hearing and vision assessments were performed at different audiological and low vision clinics at the same time as the Health on Equal Terms questionnaires were distributed by us. Medical reports, including the assessments, were retrieved after authorization by the informants and the medical departments. The audiological and visual records were evaluated by one of the authors (C. Moller). Hearing was assessed by pure-tone audiometry with the calculation of the pure-tone average for the frequencies 0.5, 1, 2, and 4 kHz (PTA4). Visual acuity was measured by Snellen chart-based standard tests (0.0 to 1.0) and visual field tests (Goldman perimetry), which were categorized into five visual field phenotypes (1 to 5) in which: category 1 was a normal visual field; category 2 was the presence of a partial or complete ring scotoma, the latter either extending or not extending into the periphery; category 3 was concentric central field loss with a remaining peripheral island less than one-half of the field circumference; category 4 was marked concentric loss < 10 degrees; and category 5 was no visual field at all (blind) (Grover, Fishman, Anderson, Alexander, & Derlacki, 1997).

Physical and psychological health was assessed by means of the Swedish Public Health survey (Health on Equal Terms). This questionnaire comprises 75 questions subdivided into 10 domains; health, living habits, tobacco, gambling, alcohol, financial situation, occupation, security, social relationships, and demographic data. The survey has been conducted annually since 2004 by the Swedish National Institute of Public Health on a random sample of the Swedish population (Bostrom & Nyqvist, 2010). The items in the questionnaire were validated for construct validity. In the present study, 36 questions concerning physical and psychological health were used. These questions were chosen because previous results indicated significantly poorer health in a USH2 group compared to the general population (Wahlqvist et al., 2013).

The questions encompassed health (general health, number of days with bad physical or psychological health, and number of days with reduced activities of daily living). Some questions were graded on a four- or five-point scale, while the questions about diabetes, asthma, allergy, high blood pressure, shoulder or neck pain, headache, and fatigue had dichotomized answers. Psychological health was assessed by 12 questions concerning ability to concentrate, feelings of worthlessness, and inability to appreciate the day as experienced in the course of the previous two weeks. Two questions pertaining to suicidal behavior were also included. Responses to the items regarding physical and psychological health were dichotomized as "problem" and "no problem." The question concerning "number of bad health days" was also dichotomized in accordance with Bostrom and Nykvist (2010), where 15 or more days was considered poor physical or psychological health.

All statistical analyses were made with the statistical program SPSS. Nonparametric chi-square testing with a significance level of p <0.05 was deemed statistically significant.


There were no differences between the participants with USH2 and the nonrespondents in terms of mean age (44.6 years), genetic diagnosis, pure-tone average (67 dB), best corrected visual acuity (0.45), or visual field (category 3). A difference was found concerning gender in that more men with USH2 belonged to the nonrespondents than to the participants (71%).

The results revealed no differences in gender, hearing, visual acuity, visual field, or age of diagnosis between the working group and the disability pension group (see Table 1). A difference was found in mean age between the working group (44 years) and the disability pension group (52 years).

Regarding psychological health, there was a difference in all psychological health variables between the two groups, with 10 of the 13 variables showing a significant difference. The persons in the working group had significantly better general psychological health compared to those in the disability pension group, who reported a higher degree of anxiety, as well as significant differences in depression, suicidal thoughts, and suicide attempts. The disability pension group members also reported significantly more loss of faith in themselves, feelings of worthlessness, unhappiness, and inability to handle problems. No significant differences were found between the groups in terms of ability to make decisions. However, the disability pension group reported a significantly higher degree of sleep and concentration problems compared to the working group (see Figure 1).

The physical health indicators had a different pattern from that of psychological health, since only two variables showed a significant difference in the disability pension group (overweight and decreased ability to run a short distance). Both groups had a high level of physical health problems comprising the variables headache, stress, allergy, asthma, and high blood pressure. The results also revealed that there were no significant differences between the two groups concerning pain in the neck, shoulders, or hands; eczema; bowel problems; diabetes; and incontinence.


In this study, we focused on persons with USH2 and their health-related problems from a work-life perspective. Persons who are not working might be on long-term sick leave or other types of leave (for example, parental leave), might be unemployed and looking for a job, or might be in receipt of a disability pension. In Sweden, when a person with USH2 can no longer work due to impaired vision and hearing, the restricted work capacity entitles them to a disability pension instead of unemployment benefit and vocational rehabilitation (Forsakringskassan [Swedish Social Insurance Agency], 2015). The differences between work and unemployment have been studied by Bambra and Eikemo (2009), who found that the correlation between health and unemployment varies between welfare states. This correlation indicates that the way different governments cope with unemployment in terms of social protection might have a moderating effect on health problems. In the present study, all participants with USH2 who did not work (49%) had a disability pension, compared to a Swedish reference population in which only 7.6% had a disability pension (Bostrom & Nyqvist, 2010). Our results show that 51% of persons with USH2 were working, which is consistent with figures found in a report from the UK by Ellis and Hodges (2013), in which half of the subjects with USH2 were employed, although their study sample only comprised 16 persons. With regard to other disability groups in Sweden, 56% of persons with disabilities were employed in 2008 (Statistics Sweden, 2014). However, a study from Canada on visually impaired persons revealed that only 33% were working (Benoit, Jansson, Jansenberger, & Phillips, 2013). Although one might expect that the additional effect of combined hearing impairment and vision loss in the USH2 group would lead to a lower employment rate compared to persons with a single sensory loss, it was not the case in our study.

This study showed that persons with USH2 who were in receipt of a disability pension reported significantly poorer psychological health compared to the working group. This finding indicates that a 100% disability pension does not facilitate better psychological health in persons with USH2. Although the duration of the disability pension was not reported, 26 of the 33 persons in the disability pension group stated that they had a previous occupation, which is consistent with results in the report by Olesen and Jansboel (2005), in which most of the respondents had been employed. Hence the vast majority of persons in the disability pension group had previous employment experience. But at some point they were awarded a disability pension instead of rehabilitation or an unemployment benefit. A consequence of this change in benefits is that once a person with USH2 has a disability pension, the chance of returning to working life is low.

When analyzing health data, we found similarities with other studies. In a meta-analysis, Paul and Moser (2009) revealed a significant increase in psychological health problems such as depression, anxiety, psychosomatic symptoms, lack of subjective well-being, and poor self-esteem in persons who were not working. These findings correspond with our results pertaining to anxiety, depression, and other indicators of subjective wellbeing. Paul and Moser not only demonstrated that not working had a positive correlation with symptoms of distress but that it actually caused psychological health problems (Paul & Moser, 2009). Our results showing psychological symptoms such as loss of confidence and the feeling of worthlessness in the disability pension group indicates that these symptoms might be a consequence of not working.

Employment implies commitment, and a person who would like to be employed but is unable to work is in an incongruent situation associated with diminished wellbeing and mental health (Paul & Moser, 2006). The significant differences in the results between the two groups in our study regarding depression, suicidal thoughts, and suicide attempts are alarming, since 20% of the persons in the disability pension group reported having made at least one suicide attempt. Several studies have demonstrated a strong positive correlation between suicide attempts and mortality (Christiansen & Jensen, 2007; Skogman, Alsen, & Ojehagen, 2004). It has also been shown that the unemployment rate correlates positively with suicide mortality (Nordt et al., 2015; Stuckler et al., 2009). A suicide attempt is an extremely important predictor of suicide (Christiansen & Jensen 2007). Hence, it is of the utmost importance that healthcare professionals give special attention to the psychological health situation of persons with USH2 who are in receipt of a disability pension.

Wahlqvist et al. (2013) revealed that physical and psychological health in persons with USH2 was significantly worse compared to a Swedish reference group. The present study found a high level of physical health problems in both the working group and the disability pension group, with no significant differences in the variables headache, stress, fatigue, allergy, asthma, high blood pressure, bowel problems, or problems in the neck, shoulders, back, or hands. The reasons for these physical health problems might be related more to the loss of vision and hearing and less to working or being in receipt of a disability pension, although the findings of overweight and reduced mobility in the disability pension group are interesting.

The most plausible explanation for poor physical and psychological health in persons with USH2 is impaired vision and hearing. However, to our surprise the analysis of background data revealed no differences between the working group and the disability pension group regarding the degree of hearing or vision loss. Data on hearing (moderate to severe hearing loss), visual acuity, and vision field measurements for the participants were all congruous. Although the visual acuity was fairly good, the visual field grading of 4 (< 10 degrees) indicates a very limited overall visual function. In other words, there must be other explanations for the differences in health between the working group and the disability pension group.

The average age of diagnosis in the USH2 group was late compared to persons with USH1 (Sadeghi et al., 2006). In our study, both groups had a very late age of diagnosis (25 years). As a consequence, some of the participants had already finished school and were of working age when they received their USH2 diagnosis. Late age of diagnosis might be an important factor. For example, there are good reasons to assume that some participants may have chosen professions that were impossible to maintain due to the progression of their visual impairment. Earlier age of diagnosis could have a positive impact on career planning for persons with USH2 (Miner, 1997). There is a risk that late age of diagnosis could lead to a critical delay in vocational training, personal support, and assistive technology. The importance of receiving an early diagnosis cannot be overemphasized. In the study by Ellis and Hodges (2013), persons with USH2 recalled that at the time of diagnosis they were offered full-time sick leave for a long period, which subsequently caused difficulties in their returning to work.

In a lifestyle survey of USH2, independence was analyzed in terms of everyday activities including information, communication, and mobility (Damen, Krabbe, Kilsby, & Mylanus, 2005). Persons with USH2 tended to need more help in order to live independently. Visual impairment did not correlate with independence, in contrast to the degree of hearing impairment, which correlated negatively with independence. Working life requires a high degree of independence due to the need to communicate, assimilate information, and have sufficient mobility skills. It has been shown that persons with USH2 can maintain their independence with personal support and technical supportive devices. The Damen results are interesting, and the differences in independence between the working group and the disability pension group call for further research (Damen et al., 2005).

The Nordic definition of deafblindness focuses not only on the visual and auditory functions but also emphasizes the restrictions in activity and participation where the environmental context is of significance (Nordic Centre for Welfare and Social Issues, 2007). The results of this study underscore the importance of employment. The health differences related to being employed demonstrate that working seems to be a potent factor for preventing psychological health problems in persons with USH2. The welfare state can provide supported employment, assistive devices, and personal support. We do not know what kind of rehabilitation services persons in the disability pension group were offered, but at some point they were awarded a 100% disability pension. It is plausible to interpret the results that being in the labor force is important for persons with USH2. Further studies of environmental factors such as work for persons with USH2 are of the utmost importance in order to cast light on the causal relation between USH2, wellbeing, and work.


The number of participants with USH2 in our study may be considered low, but the total number of people with USH2 in Sweden is small. The estimated prevalence of USH2 is approximately 300 persons, of whom 170 are of working age (Moller, personal communication, December 2014). This survey was sent to 84 persons with USH2 aged 18 to 65 years, and 67 responded, resulting in a response rate of 80%. Those who participated in our study represent about 40% of the total population of known individuals of working age with USH2 in Sweden. This number is high when considering the visual difficulties that might limit a person's ability to respond to a printed questionnaire. To the best of our knowledge, the number of participants in this study is by far the largest in a work- and health-related study of persons with Usher syndrome.

The aim of this study was to explore the health of persons with USH2 from a working life or employment perspective, and the analysis revealed clear correlations. Based on our results and other studies, it seems plausible that there are causal mechanisms involved, but since it is a cross-sectional study no firm conclusions regarding causality can be established. Further studies are required to confirm that hypothesis.


Our study showed that persons with USH2 who were in receipt of a disability pension had significantly poorer psychological health than persons with USH2 who were employed. Good rehabilitation and vocational training in addition to opportunities to continue working seem to be extremely important for maintaining good psychological health.

Although persons with USH2 are at significant risk of isolation due to communication, information, and mobility difficulties that restrict activity and participation, employment seems to counteract the risk and provide health benefits. This study indicates that the importance of work for this group cannot be underestimated. The mechanisms behind the difference in psychological health require further research.


This study highlights the fact that there is a need for early interventions supporting persons with USH2 by means of vocational training and other work-promoting activities instead of granting them a disability pension, since in the long term employment may make the difference between good and bad psychological health. It is important that persons with USH2 receive all possible support from an early age and that professionals in the field of rehabilitation always include work activity as a key element of interventions. An aim for all professionals working in the field of rehabilitation for persons with USH2 should be how best to support their clients in obtaining employment and remaining professionally active for as long as possible.

For professionals supporting persons with USH2 who have developed psychological health problems, employment opportunities are perhaps an unexploited complement to psychological rehabilitation. A great deal of suffering might be avoided if early interventions supporting work activity could prevent persons with USH2 from developing psychological health problems. As work activity for persons with USH2 correlates with the rate of attempted suicide and hence increased risk of early mortality, it is important from a preventive perspective. Further research is required to learn how rehabilitation can be tailored to meet the needs of persons with USH2 and to identify health-related problems at an early stage. Furthermore, persons with USH2 who have not been employed for some time merit attention as they are not included in any work-related rehabilitation program and seem, at least in Sweden, to be a "forgotten" group.

This study was funded by Orebro University and the Swedish Research Council (Linneus-HEAD-grant). The authors thank the personnel at the Swedish Audiological Research Centre Orebro. A special thanks to our librarian Margareta Landin.

The authors report no conflict of interest.


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Wahlqvist, M., Moller, C., Moller, K., & Danemark, B. (2013). Physical and psychological health in persons with deafblindness that is due to Usher syndrome type II. Journal of Visual Impairment & Blindness, 107(3), 207-220.

Mattias Ehn, M.Sc., psychologist, doctoral student, Audiological Research Center, Orebro University Hospital, S-701 85 Orebro, Sweden; School of Medicine and Health, Orebro University, Orebro, Sweden; Linneus HEAD centre, Swedish Institute for Disability Research, Orebro, Sweden; e-mail: <>. Kerstin Moller, Ph.D., School of Medicine and Health, Orebro University, Orebro, Sweden; Audiological Research Centre, Orebro University Hospital; Linneus HEAD centre, Swedish Institute for Disability Research, Orebro, Sweden; e-mail: <>. Berth Danermark, Ph.D., professor, School of Medicine and Health, Orebro University, Orebro, Sweden; Audiological Research Centre, Orebro University Hospital; Linneus HEAD centre, Swedish Institute for Disability Research, Orebro, Sweden; e-mail: <>. Claes Moller, M.D., Ph.D., professor, School of Medicine and Health, Orebro University, Orebro, Sweden; Audiological Research Centre, Orebro University Hospital; Linneus HEAD centre, Swedish Institute for Disability Research, Orebro, Sweden; e-mail: <>.

Table 1
Gender, age, visual and audiological data of the participants.

Variable                 Working group          Disability pension

Women                    53%                    54%
Mean age (18-65 years)   44 years               52 years
PTA4 dB (mean)           72 dB (SD 11.8)        71 dB (SD 15.2)
Best corrected visual    0.3 (SD 0.2)           0.4 (SD 0.3)
  acuity (mean)
Visual field category    < 10 degrees (4)       < 10 degrees (4)
Hearing loss diagnosis   3.8 years (SD 1.7)     4.8 years (SD 2.0)
  age (mean)
Usher diagnosis age      24.6 years (SD 10.6)   24.8 years (SD 9.5)
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Author:Ehn, Mattias; Moller, Kerstin; Danermark, Berth; Moller, Claes
Publication:Journal of Visual Impairment & Blindness
Article Type:Report
Date:Jul 1, 2016
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