The Societal Impact of Age-related Macular Degeneration: Use of Social Support Resources Differs by the Severity of the Impairment

Mark Brennan, Amy Horowitz, Joann P. Reinhardt, Cynthia Stuen, Roman Rubio, and Nina Oestreicher

Abstract: Objective and subjective severity of visual impairment were examined in relation to the receipt of social support over time among 384 adults with age-related macular degeneration. Both types of impairment were related to greater family support, with those with discrepant subjective and objective impairment (high and low, respectively) reporting the most instrumental support.

Age-related macular degeneration (AMD) is the leading cause of legal blindness among persons aged 50 years and older and is most prevalent among individuals of European descent aged 65 and older (Friedman et al., 2004; Rosenthal & Thompson, 2003). The number of persons affected by AMD will likely double within the next 30 years concomitant with the aging of the population. AMD manifests as both a "dry" form (85%) and the less common "wet" form (15%; National Eye Institute, NEI, 2010). Risk factors for AMD include age, smoking, cardiovascular disease, diet, and variation in the complement factor H gene (Klein et al., 2005; Seddon, 2000). No current treatments exist for the dry form of AMD, which progresses slowly. The wet form progresses at a variable rate. Although both types of AMD may result in the loss of central vision, two-thirds of those with advanced AMD have the wet type (NEI, 2010).

By affecting central vision, AMD interferes with such tasks as reading, driving, and activities of daily living (Owsley et al., 2006; Rosenthal & Thompson, 2003; Rovner & Casten, 2002; Wahl, Schilling, & Becker, 2007). This type of functional visual impairment also has a negative impact on participation in social activities, such as seeing or visiting with family members, friends, and neighbors (Crews & Campbell, 2001). Given its negative impact on functional ability, it is not surprising that AMD has negative consequences for mental health; one-third of older adults with advanced AMD have clinically significant depressive symptomatology (Brody et al., 2001; Horowitz, Reinhardt, & Kennedy, 2005; Rovner, Casten, & Tasman, 2002).

Social support resources are an important positive factor in adapting to age-related visual impairment. These resources include both affective (emotional) and instrumental aspects of support (Reinhardt, 2001) from both friends and family members (Horowitz, Reinhardt, Boerner, & Travis, 2003; Reinhardt, 1996). Affective support often involves talking over problems or giving advice, while instrumental support consists of help with everyday tasks like shopping. With age-related visual impairment and its resulting disability, it is also important to understand the predictors of the use of social support. For example, although functional disability has been associated with greater amounts of family instrumental support over time in older adults with visual impairments, it has been associated with a decreased amount of affective support from friends (Reinhardt, Boerner, & Benn, 2003). In general, continuing social relationships and receiving necessary assistance are both important for adjusting to age-related vision loss. Thus, a further examination of the effects of the severity of visual impairment on social support is needed.

Both objective and subjective aspects of visual impairment must be considered in relation to social support because they may capture different dimensions of the impact of an eye disease. For example, the objectively assessed aspects of an eye disease, such as binocular acuity or contrast sensitivity, are related to difficulty with tasks like reading, driving, and mobility (Rubin, Bandeen-Roche, Prasada-Rao, & Fried, 1994). But self-reported subjective visual impairment across broad functional domains may provide more insight into the true psychosocial impact of AMD and has been reported to be more strongly related to depressive symptomatology than such objective measures as acuity (Horowitz, Reinhardt, McInerney, & Balistreri, 1994). Thus, the study presented here used both objective and subjective visual impairment as covariates of the use of social support resources.

Purpose and rationale

AMD results in visual impairment for an increasing number of older adults. Because of its negative impact on functional ability and mental health, the instrumental and affective social support received by those with AMD can be crucial in adapting to this condition. In our study, we examined how the severity of visual impairment, both objective and subjective, was related to the use of social support by older adults with AMD over an 18-month period. We also conducted exploratory analyses of the interactions between objective and subjective assessments in relation to social support to gain a better understanding of the contributions of these two related, yet distinct, indicators of visual impairment. Data for the study were collected between 1998 and 2004, when fewer medical therapies were available to facilitate the maintenance of vision in this population, so it allows for the examination of the social impacts of AMD coinciding with the natural history of this condition.

Method

Participants

The sample consisted of 384 individuals who self-identified as having AMD (wet or dry was not specified), drawn from a larger study of applicants for vision rehabilitation services (n = 584): Depression, Disability, and Rehabilitation in Vision Impaired Elders, NEI R01EY12563-5, A. Horowitz, PI. The study was conducted from 1998 to 2004 at Lighthouse International, a vision rehabilitation agency in New York City. The criteria for inclusion were speaking English, living in the community, the recent onset of a visual impairment (within five years), and being sufficiently cognitively and hearing intact to be interviewed. Persons who were suspected of having cognitive impairment at the time of recruitment were screened with the Mental Status Questionnaire (Pfeiffer, 1975), and those with positive screens (that is, scores of 7 or greater) were not invited to participate. Exclusion criteria included the prior use of vision rehabilitation services and a diagnosis of Parkinson's disease or stroke in the past year. Persons were not excluded if they reported eye diseases, primarily cataracts (34%), glaucoma (18.1%), or diabetic retinopathy (8%), in addition to AMD.

The average age of the participants was 81.6 years. Men were oversampled to allow for gender comparisons, but women accounted for a slight majority (53%). Most participants were non-Hispanic whites (94%). The participants' educational status was diverse, with one-quarter being high school graduates, 21% having attended some college, and 27% having at least a college degree. Most were retired (89%), and were of middle socioeconomic status (62%). Although most participants reported adequate incomes, 35% reported that they were just managing, and 4% could not make ends meet. All the participants who reported being married (40%) were living with their spouses; in addition, 45% lived alone and 15% lived with others but not their spouses.

On average, older participants with AMD received 8.19 hours of vision rehabilitation services. The majority of these hours were provided between the baseline assessment (immediately after their application for services) and 6 months (Time 2), when the average number of service hours was 5.5. During this interval, the most frequently reported service was a low vision examination (69%), followed by case management (30%), and rehabilitation teaching (25%). Ten percent received orientation and mobility training, and 3% received mental health counseling.

Measures

Objective visual impairment

The best-corrected binocular distance vision with the current correction was assessed in the clients' homes by the research assistant, who conducted the in-person interview using a portable, back-lighted Early Treatment Diabetic Retinopathy Study (ETDRS, 1980) Visual Acuity Chart. Testing was conducted at a distance of 2 meters (about 6.6 feet) or at 1 meter (abut 3.3 feet) if the participant was unable to read the top line at 2 meters. Testing was terminated when three or fewer letters were read on a line.

Subjective visual impairment

The Functional Vision Questionnaire (FV) is a 15-item self-report measure (Horowitz, Teresi, & Cassels, 1991) that assesses the extent to which vision loss causes difficulty in specific functional areas (such as reading), scored 0 = no difficulty to 1 = difficulty. The questionnaire has been validated against clinically assessed distance acuity (Horowitz, 1996).

Social support network

Information was obtained on the number of persons in the participant's social network (including a spouse, children, and grandchildren; siblings and other relatives; friends; and neighbors), as well as the frequency of face-to-face and telephone contact with these individuals. These items were obtained from previous large-scale studies of older adults' social support networks (see Cantor & Brennan, 2000).

Family, friends or neighbors support indexes

Each index had 5 items (shopping, driving or escort, housekeeping, finances, and help with mail), which were weighted by the frequency of occurrence (not at all = 1 to every day = 5). Scores ranged from 5 to 25. The indexes were comprised of three weighted items (advice, emotional support, and help with personal problems), with scores ranging from 3 to 15. For all the indexes, higher scores indicated greater support. The items for both the instrumental and affective support indexes were obtained from previous large-scale studies of older adults' social support networks (see Cantor & Brennan, 2000).

Procedures

Participants were recruited by telephone following their initial application for vision rehabilitation services. After providing informed consent, they were interviewed in their homes for approximately 100 minutes by trained interviewers. The participants were interviewed four times at 6-month intervals: the baseline (Time 1, n = 384), 6 months (Time 2, n = 316), 12 months (Time 3, n = 297), and 18 months (Time 4, n = 275). They were paid $25 per interview and were thanked and debriefed at the end of each session. The methodology was approved by the Lighthouse Institutional Review Board.

The listwise sample that was used in the current analyses consisted of 242 individuals who had provided data at all four time points. In an attrition analysis that examined potential biases in our findings, those who dropped out or died during the course of the study were significantly older (83.3 versus 80.6 years), had greater disability in instrumental activities of daily living, and were more likely to rate their health as poor or very poor (20%) compared to the analysis sample (5%). However, there were no significant differences in the sample according to gender, race or ethnicity, marital status, education, income adequacy, visual acuity, or contrast sensitivity. Thus, attrition was the greatest among those who were older and in poorer health.

Design and analysis

The study used a longitudinal design with four measurement times. The analyses used a quasi-experimental design with preexisting groups based on objective and subjective measures of visual impairment. Best-corrected visual acuity (objective visual impairment) was collapsed into three groups: better than 20/70 (35%), 20/70 to 20/199 (46%), and 20/200 or worse (19%). These thresholds were chosen because acuities of 20/70 or worse are considered to be low vision, and those of 20/200 or worse are considered to be legal blindness (Faye, 1984). For subjective visual impairment, FV scores were also collapsed into three groups: none or mild (FV = 1 to 8, 25%), moderate (FV = 9 to 11, 40%), and severe (FV = 12 to 15, 35%). The four dependent variables were the social support indexes described earlier.

To assess the effects of objective and subjective visual impairment at the baseline over the 18-month period of the study on the receipt of instrumental and affective support from family members, friends, and neighbors, we conducted repeated-measures multivariate analyses of variance (MANOVAs), with time (Time 1 to Time 4) as the within-subjects factor and visual impairment groups as the between-subject factors. MANOVA was chosen because of its facility in analyzing repeated-measures data and examining main and interaction effects of independent variables. The interaction effects reported here should be considered exploratory, given the small size of one of the groups (fewer than 5 for worse than 20/200 objective status and mild subjective status).

Results

Social support is a function of the availability of individuals to provide assistance and the level of engagement among members of a network (Cantor & Brennan, 2003). More than four-fifths of the participants reported having at least one living child, and the average number of living children was 2.4 among those with children. The levels of contact between the participants and their children was fairly high, with more than one-half seeing a child at least weekly and 40% having daily telephone contact, with little change in contact with their children over time. Ninety-one percent of the participants reported having other relatives (such as siblings and grandchildren), and the average was 6.4 among those with relatives. The participants also had a high frequency of contact with other relatives that was stable over time; 36% saw a relative at least weekly. Telephone contact with other relatives was also high, with 44% speaking to a relative at least weekly.

The proportion of participants who reported having a friend increased steadily, from 73% at the baseline to 81% at Time 4. However, the average number of friends reported remained stable (4.8 to 4.5 among those with friends). Sixty-four percent reported knowing at least one neighbor well, which remained stable over time, with the average number of neighbors being approximately 3. Both face-to-face and telephone contact with friends was frequent. At the baseline, 43% of the participants saw friends at least once a week, and 53% to 56% telephoned friends at least weekly. Only three individuals reported no family or friends in their social networks.

Family support

A repeated-measures MANOVA did not find any significant change in the level of family instrumental assistance over time, ranging from an average of 15.6 at the baseline to 16.0 at Time 4. There was no significant main effect for objective visual impairment, but there was a significant main effect for subjective visual impairment overall (p < .001) at each time of measurement and for the objective \x subjective interaction overall (p < .01) and at the first three assessments (see Table 1). That is, persons with a greater severity of subjective visual impairment received greater levels of instrumental help from their families, except those with visual acuities of 20/70 to 20/199 where the moderate and severe groups received equivalent levels of assistance. It is interesting that persons with acuities of better than 20/70 but who had severe subjective ratings (n = 15) reported the highest levels of assistance. An example of this pattern of interaction between objective and subjective visual impairment on family instrumental support from family members at Time 1 is illustrated in Figure 1.

The Family Affective Support Index decreased slightly over the course of the study, from an average of 7.8 at the baseline to 7.2 at Time 4, but this change was not statistically significant. Although a preliminary bivariate analysis found a significant main effect for subjective visual impairment at Time 1, this effect was not confirmed in the multivariate test (p = .057). However, as was the case with instrumental support, persons with greater subjective visual impairment tended to report greater levels of affective support from family members at Time 1. We also did not find a significant main effect for objective visual impairment over time (see Table 2). A repeated-measures MANOVA found no significant interaction effects of objective or subjective visual impairment.

Friends' or neighbors' support

The average for the Friends' or Neighbors' Instrumental Support Index was 6.7 at the baseline and increased only slightly and nonsignificantly over the course of the study to 7.2 at Time 4. Furthermore, there were no significant main effects for objective or subjective visual impairment on friends' instrumental support in the multivariate analysis over time. A repeated-measures MANOVA did not find any significant change in the level of friends' instrumental support over time (see Table 3). The Friends' Affective Support Index ranged from an average of 4.4 at the baseline to approximately 4.3 at the last two times of measurement. There were no significant main effects of either the objective or subjective visual impairment covariates on friends' affective support in a multivariate analysis across the four times of assessment (see Table 4). A repeated-measures MANOVA did not find any significant change in the level of friends' affective support over time.

Discussion

Family instrumental support was stable over the 18 months of the study, and those with poorer visual acuities and more severe subjective impairment at the baseline on all four assessments received higher levels of support. The significant interaction between objective and subjective visual impairment indicated that those with better acuities who rated themselves as severely visually impaired received the most instrumental support from their families, whereas those with the worst acuities but with mild self-ratings of impairment received the least. This finding suggests that the use of social support resources from family members may be driven more by an older person's self-perceptions of the need for assistance than by objective criteria of visual function.

The level of family affective support changed little over time and was significantly related to both objective and subjective visual impairment in the bivariate, but not multivariate, analyses. Overall, those with more severe subjective visual impairment received greater levels of affective support from family members, consistent with reports of greater mental health problems among those who perceive that they have greater visual problems, which suggests the need for greater affective support in this group (Brody et al., 2001; Rovner et al., 2002). With regard to friends' or neighbors' instrumental and affective support, there was no significant change in the level of such assistance over time and no significant relationships with objective or subjective visual impairment.

Because social support resources are an important positive factor in adapting to visual impairment in late adulthood (Horowitz et al., 2003), the results of this study suggest that older adults with AMD who seek rehabilitation are relatively well positioned in this regard. Many participants had either a spouse or a child available to provide assistance, the members of the social network who are most likely to provide assistance in times of need (Cantor & Brennan, 2000). In addition, large proportions had other relatives, friends, or neighbors who were additional sources of assistance. A novel finding concerned the group with acuities better than 20/70 but severe self-rated impairments who received the highest levels of family instrumental help. Family affective support was also positively related to the greater severity of visual impairment. However, this responsiveness was not evident in friends' or neighbors' instrumental or affective support, suggesting that the ability of these network members to meet the needs of those with AMD is limited or that older adults with AMD may be reluctant to use nonkin sources of social support. In kin relations, whoever has the greatest need at a given time receives the greatest support, while nonkin relations involve eventual reciprocation and are not as affected by fluctuations in need (Flaig, Mock, & Reinhardt, 2008).

This study was conducted before efficacious therapies were approved for AMD, notably those that target angiogenesis. It is unclear whether the association between visual impairment and the use of social support that we found would differ now that an effective treatment is available. Until 2006, treatments for wet AMD were able only to slow the progression of this visually disabling retinal disease. Visudyne, or verteporfin photodynamic therapy, a combination of drug and diode laser treatment, was approved in 2000 and represented the first major advance over the commonly used laser photocoagulation that was associated with vision loss and deleterious effects on the retina. Although Visudyne was considered a breakthrough at the time, resulting in a doubling of the chances of visual stabilization (defined as the loss of fewer than 15 letters from the baseline on a vision chart) over the previous laser photocoagulation treatment, patients nevertheless continued to lose vision (Schachat, 2005). Also during this time, vitamin and mineral supplementation was proved in the landmark Age-Related Eye Disease Study (AREDS) to slow the risk of development of wet AMD by approximately 25% to 33%, a treatment approach that continues to be used with persons who are at risk of developing advanced AMD (AREDS, 2001). Surgical approaches to treat wet AMD have also been explored, including macular translocation surgery and submacular surgery, both of which failed to gain wide acceptance because of the wide variability in visual outcomes and the relatively high complication rates (Miskala et al., 2004; Pieramici et al., 2000).

Macugen, the first antivascular endothelial growth factor (VEGF) therapy approved to treat wet AMD, represented the next breakthrough in the treatment of wet AMD by targeting VEGF, a potent mediator that is responsible for the growth of new vessels and leakage of fluid within the retina. Although Macugen was successful in reducing the amount of severe vision loss, defined as a loss of at least 30 letters from the baseline, the therapy was able to slow the rate of visual decline only in persons with wet AMD (Gragoudas et al., 2004). Lucentis, also an anti-VEGF therapy, was the first treatment that was actually able to improve vision in persons with wet AMD and was approved by the FDA in 2006. Lucentis represented a major advance in the treatment of wet AMD because it was able to demonstrate a clinically significant improvement in vision, defined as a gain of at least 15 letters from the baseline on a vision chart, in up to 41% of those who were studied (Rosenfeld et al., 2006).

The availability of clinical interventions for dry AMD is limited by the lack of proved therapies to treat vision loss; however, those with wet AMD require immediate intervention to maximize their chances of vision stabilization or improvement. The current standard of care, ranibizumab (that is, Lucentis), requires monitoring and administration, thus necessitating some amount of instrumental and affective support to maximize one's chances of visual recovery. The identification of support resources at the time of the diagnosis of wet AMD may ultimately serve to ameliorate the visual impairment, since these sources of assistance may be required to help the person with AMD adhere to these rigorous treatment protocols in order to accrue benefits to visual acuity and functioning, resulting in a better quality of life.

The finding that the instrumental and affective support that the participants received from their family members and friends was relatively stable over the course of the study has implications for services. Vision rehabilitation professionals may want to determine the level of support that is available to their clients with AMD at the beginning of treatment. In 1999, Lighthouse International conducted a demonstration project that sought to incorporate the family of the older adult into rehabilitation planning and implementation. This family-focused model is a fundamental shift from the traditional model of rehabilitation that focuses only on the person with a visual impairment, and resulted in professional guidelines for the involvement of family members in the rehabilitation process without diminishing the autonomy of the vision rehabilitation client. In some cases, helping an older person deal with his or her relatives is the most important intervention. But the findings also cautioned that a successful family-oriented service model requires a cultural change among staff members along with education (Stuen & collaborators, 1999).

Not all older persons have social support available, so vision rehabilitation providers may need to consider ways of fostering support, such as mutual aid or self-help groups that are implemented either face to face or via telephone and increasingly with social networking sites on the Internet. It is important for clinicians and rehabilitation providers to realize that older adults with AMD do receive significant support from family members and friends and that this support remains stable over time; social support networks are responsive to needs. But because family members often have many misperceptions about the abilities of older adults with AMD and may be overprotective (Cimarolli, Reinhardt, & Horowitz, 2006), it is also important to bring them into the intervention and to address their educational and emotional needs. Of further interest is the group who had acuities better than 20/70 but self-ratings of visual impairment as severe; these individuals received the highest levels of instrumental help from their families. Future studies should look at this discrepancy more closely to aid in devising appropriate interventions that are based on subjective perceptions of visual status, not only objective measures.

Strengths and limitations

Although the strength of the study was its large sample of older adults with AMD, the sample was drawn from a large metropolitan area in the northeastern United States and thus may not be generalizable to other geographic areas or to those who are not vision rehabilitation clients. Although the findings are consistent with those in the literature, they should be replicated in other diverse populations. A limitation of our objective assessment of visual function is that only distance acuity was measured because of the time limitations of the interviews and was not exclusive to AMD patients, and data on near acuity, which is more germane to the functional impairments resulting from AMD, are not available. An additional limitation is that we were not able to examine the effects of the type of AMD (wet or dry). However, we are not aware of any empirical findings that the type of AMD affects the receipt of social support, per se, if other factors are constant. An additional contribution of the study are the findings concerning individuals with a high discrepancy between objective and subjective visual impairment. These findings suggest that such a discrepancy may be important in examining mental health outcomes, social support resources, and the use of rehabilitation services. However, these groups were relatively small, and these findings should be replicated with a larger sample.

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Mark Brennan, Ph.D., consultant, Lighthouse International, 111 East 59th Street, New York, NY, 10022, and senior research scientist, AIDS Community Research Initiative of America; e-mail: <mbrennan@acria.org>. Amy Horowitz, DSW, professor and Langenfeld Chair in Social Research, Fordham University Graduate School of Social Services, and senior research fellow, Jewish Home Lifecare, 113 West 60th Street, New York, NY 10023; e-mail: <ahorowitz2@fordham.edu>. Joann P. Reinhardt, Ph.D., director of research, Research Institute on Aging, Jewish Home Lifecare, and associate professor, Brookdale Department of Geriatrics and Adult Development, Mount Sinai School of Medicine, 120 West 106th Street, New York, NY 10025; e-mail: <jreinhardt@jhha.org>. Cynthia Stuen, Ph.D., senior vice president of policy and evaluation, Lighthouse International, 111 East 59th Street, New York, NY, 10022; e-mail: <cstuen@lighthouse.org>. Roman Rubio, M.D., associate group medical director, Genentech, 1 DNA Way, South San Francisco, CA 94080; e-mail: <rgrubio@gene.com>. Nina Oestreicher, Ph.D., principal, Global PRO Strategy, Genentech, 1 DNA Way, MS 66, South San Francisco, CA 94080; e-mail: <hill.nina@gene.com>.

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