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Keywords:

  • diabetic retinopathy;
  • distress;
  • emotional well-being;
  • impact;
  • social well-being

Abstract

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

People with vision-threatening diabetic retinopathy are likely to experience enhanced social and emotional strain. Critically, those with both vision-threatening diabetic retinopathy and psychosocial problems may have significantly reduced levels of functioning compared with psychologically healthy counterparts. This can cause inadequate compliance, increased strain on family functioning, worse diabetes control, increased progression of diabetic retinopathy and, consequently, further psychosocial stress resulting in a number of concerning implications for disease management, clinical outcomes and healthcare costs. However, the emotional and social health consequences of diabetic retinopathy have not yet been systematically explored. This information is crucial as it allows for a targeted approach to treatment and prevention and avoidance of the potentially detrimental implications described above. Therefore, this paper reviews the current qualitative and quantitative evidence regarding the social and emotional impact of diabetic retinopathy and identifies directions for future research. Key search terms were applied to the electronic databases Pubmed, ISI Web of Science and Embase and the bibliographies of relevant papers were systematically reviewed for additional references. Overall, the evidence suggests that diabetic retinopathy and associated vision loss have several debilitating effects, including disruption of family functioning, relationships and roles; increased social isolation and dependence; and deterioration of work prospects resulting in increased financial strain. Adverse emotional responses include fear, anxiety, vulnerability, guilt, loss of confidence, anger, stress and self-perception issues. However, the research to date is largely qualitative in nature, with most quantitative studies being small, cross-sectional and somewhat outdated. Similarly, the outcome measures used in many studies to date are suboptimal in terms of content and validity. Therefore, this review identifies the need for improved outcome measures to provide valid, meaningful measurement of the social and emotional impact of diabetic retinopathy and discusses potential directions for future research such as item banking and computer adaptive testing.


Introduction

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Diabetic retinopathy (DR) is a common microvascular complication of diabetes, which is potentially blinding.1 Key risk factors for DR include hyperglycaemia, dyslipidaemia, hypertension and longer duration of diabetes.2 After 20 years, the majority of patients with diabetes will have some degree of DR.2,3 DR is defined according to the presence and severity of objective clinical signs including microaneurysms, intraretinal haemorrhages, cotton wool spots, venous beading or intraretinal microvascular abnormalities and appearance of new, superfluous and tortuous blood vessels. The distinct stages of DR include mild non-proliferative DR (NPDR); moderate NPDR; severe NPDR; and proliferative DR (PDR). In mild and moderate NPDR stages, visual acuity and visual functioning are usually not affected; however, as the disease progresses to severe NPDR or PDR, visual impairment can occur resulting in difficulty with day to day tasks, driving and mobility. Diabetic macular oedema (DME), characterized by rings of hard exudates and/or generalized thickening of the central macula, can occur at any stage and affects central vision, which may impact on tasks that require the ability to see fine detail.2,4

A strong association between diabetes and impaired mental health has been clearly established,5 and evidence suggests that the presence of diabetes doubles the odds of comorbid depression.6 Similarly, visual impairment, from any ocular condition, has been linked with a range of social and emotional issues.7,8 Up to one-third of people with visual impairment report clinically significant depressive symptoms.8 As demonstrated recently by Nyman et al., working-aged adults with visual impairment report worse overall mental health, social functioning and quality of life (QoL) compared with their sighted peers.9 As patients with vision-threatening DR have both visual impairment and diabetes, it can be hypothesized that the social and emotional strain they experience is likely to be considerable.

It has been documented that individuals with visual impairment or diabetes who also experience psychosocial problems have significantly reduced levels of functioning and QoL compared with psychologically healthy counterparts. This reduced functioning can lead to a downward negative spiral of reduced adherence to healthcare advice and appointments, increased strain on family functioning and social support systems, worsening diabetes control and increased development and progression of DR, leading to further psychosocial stress.10–17 Because of the combined stress of diabetes and actual or threatened visual impairment experienced by individuals with DR, these patients may be particularly prone to this cycle, which has a number of concerning implications for disease management,18 clinical outcomes,19–21 healthcare costs and patient health.22

With the prevalence of diabetes escalating worldwide, it is increasingly important to understand the social and emotional effects of diabetic complications such as DR. Although the evidence of the impact of DR and DR-related vision loss on quantitative measures of visual functioning such as restriction in activities of daily living and mobility is compelling,23 evidence regarding other important traits beyond disability, such as the emotional and social health consequences of DR, have not yet been systematically reviewed. This information is vital as it enables effective and targeted interventions to help avoid the potentially detrimental implications described above. By understanding who is more likely to be affected, when they are likely to be affected and what mechanisms underlie the associations means that at-risk populations can be targeted at critical time points. For instance, by increasing our understanding of the social implications of DR, better services such as family counselling, work and financial support and social networking advice can be offered to those most in need when they are most in need. Such information is fundamental for policy planners to budget future healthcare expenditure and for rehabilitation workers to better assist their current patients.

Therefore, this paper reviews the current qualitative and quantitative evidence regarding the social and emotional impact of DR. By ‘social’, we refer to social life, hobbies and leisure, social isolation, personal relationships (e.g. family, spousal, friendships), role maintenance in the family, social networks and community positions, work productivity, work relationships, financial security and loss of income. By ‘emotional’, we encompass all emotional reactions to actual or threatened vision loss, such as fear, vulnerability, demoralization, worry, guilt, loss of confidence, dependence, uncertainty, anger, helplessness, worthlessness, stress and low self-esteem, as well as mental health disorders such as depression and anxiety. The review highlights the limited nature of current evidence; identifies directions for future research; and demonstrates the need and potential for improved outcome measures to provide valid, meaningful measurement of the social and emotional impact of DR.

Method of literature search

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Our literature review was conducted by searching the Pubmed, ISI Web of Science and Embase electronic databases. Other databases were also considered; however, as the search findings from the three initial databases were very similar, additional searches were deemed unnecessary. Gray literature was not considered in order to ensure the scientific merit of the reported findings. No date restriction was applied and articles in languages other than English were not considered. The search terms were: diabetic retinopathy OR diabetic macular (o)edema OR diabetic vision loss OR visual impairment AND depression OR anxiety OR psychosocial OR emotional OR impact. Papers were included if they (i) were qualitative or quantitative; (ii) provided specific data for DR or DME; (iii) described any aspect of social and emotional impact or discussed the impact of DR on social and emotional domains of a validated QoL instrument. Review papers, conference abstracts, studies using a non-validated patient-reported outcome measure, papers discussing other eye diseases, papers referring to general visual impairment from a variety of ocular conditions without specific data relating to DR, and papers describing visual functioning and/or ‘QoL’ without particular reference to social and emotional impact were excluded by reviewing the title and abstract. Bibliographies of relevant papers were also scanned for additional relevant references. The following data were extracted from each relevant article: authors, year, patients' characteristics (diabetes type, number of participants with DR), study design and outcome measure(s) used (if applicable) and summary of key findings. The study findings were categorized, synthesized and presented as three related topics: social well-being, emotional well-being and socioemotional subscale results from validated outcome measures. Tables 1–3 provide a summary of the search findings.

Table 1.  Literature review findings on the impact of DR on social well-being parameters
Study detailsPatient characteristicsStudy type and outcome measure(s)Aim of studyBrief summary of findings
  • Studies are ordered alphabetically within each topic subsection. BDI, beck depression inventory; DR, diabetic retinopathy; FAD, family assessment device; HRQoL, health-related QoL; PDR, proliferative diabetic retinopathy; PSSS, perceived social support scale; QoL, quality of life; RetDQoL, retinopathy dependent QoL; RMHI, rand mental health index; RSES, Rosenberg self-esteem scale; VI, visual impairment; VTDR, vision-threatening diabetic retinopathy.

Bernbaum et al. (1993)24n = 22 with DR, all either legally or totally blind.Quantitative, cross-sectional study. BDI, RSES, RMHI, FAD, PSSS.To assess the impact of diabetes and vision impairment on interpersonal distress and marital functioning.Family relationships: 50% divorce rate after onset of VI. Increased family stress. Impaired family functioning. Worsening of spousal relationship due to VI.
Candrilli et al. (2007)25n = 252 with DR.Quantitative, cross-sectional study.To estimate the prevalence and burden of symptoms of DR.US adults aged ≥40 years with DR were much more likely to be unable to work because of physical limitations than diabetics without DR.
Coyne et al. (2004)26n = 15 with DR, one-third with VTDR and significant vision loss.Qualitative, 4 focus groups.To explore the impact of DR on daily activities and HRQoL.Social impact: loss of driving resulted in more social isolation. Family relationships: over-fussing by family members was a cause of tension.
Devenney and O'Neill (2010)27n = 10 with DR, 7 with severe DR.Qualitative, individual semi-structured interviews.To investigate the experiences of people living with DR and how they manage in their daily lives.Social impact: practical difficulties in participating in social activities led to withdrawal from social situations and social isolation. Roles: impact on roles and identities as family provider and carer. Work prospects: directly affected. Personal relationships: imbalance due to loss of independence and feeling of burden, loss of friendships.
Klein et al. (1992)28n = 2366 with or at risk of PDR at baseline.Quantitative, 4-year population-based cohort study.To examine the prevalence and incidence of and risk factors for PDR.At baseline, PDR was significantly related to higher rates of early retirement in younger-onset persons and in older-onset men. At follow-up, those with PDR had lower rates of full-time employment and a higher rate of unemployment.
Klein et al. (1994)29n = 1240 at risk of PDR at baseline.Quantitative, 4-year population-based cohort study.To investigate the relationship between socioeconomic factors and the incidence of PDR and loss of vision.Men ≥25 years with severe DR at baseline were significantly more likely to be unemployed at follow-up. Women with visual impairment at baseline were more likely to have become divorced or separated at follow-up.
Oehlergiarratana and Fitzgerald (1980)30n = 4 with DR and severe visual impairment. All <36 years old.Qualitative, 7 consecutive 2-h group sessions.To explore psychosocial reactions to diabetic blindness.Social impact: increased social isolation due to social stigma. Family relationships: increased irritation due to over-fussing, disintegration of marriage prospects, strain on intimacy. Work prospects: some losses encountered.
Woodcock et al. (2004)31n = 44 with DR, most with PDR.Qualitative, 44 semi-structured interviews.To understand the impact of DR on QoL and to inform the development of the RetDQoL questionnaire.Social impact: difficulty recognizing faces and increased social isolation. Family relationships: increased irritation and strain. Work prospects: under threat or directly compromised.
Table 2.  Literature review findings on the impact of DR on emotional well-being parameters
Study detailsPatient characteristicsStudy type and outcome measure(s)Aim of studyBrief summary of findings
  • Studies are ordered alphabetically within each topic subsection. ADL, activity of daily living; BSI, brief symptom index; COPE, coping orientation to problems experience; DME, diabetic macular oedema; DR, diabetic retinopathy; DST, diabetes self-reliance test; FA-LTE, Family Apgar-List of Threatening Experiences; GHQ, Goldberg general health questionnaire; HADS, hospital anxiety and depression scale; HFS, hypoglycaemic fear survey; IADL, instrumental activities of daily living; LES, Johnson and Sarason life events survey; MMPI, Minnesota Multiphasic Personality Inventory; PAIS, psychosocial adjustment to illness score; PDR, proliferative diabetic retinopathy; PSSS, perceived social support scale; RMHI, rand mental health index; RSES, Rosenberg self-esteem scale; SADS, social avoidance and distress scale; SCT, Washington University Sentence Completion Test; SF-36, short form-36; STAI-1/2, State-Trate Anxiety Inventories 1/2; VA, visual acuity; VI, visual impairment; VTDR, vision-threatening diabetic retinopathy; ZSDS, Zung self-rating depression scale.

Bernbaum et al. (1993);24 Coyne et al. (2004);26 Devenney and O'Neill (2010);27 Oehlergiarratana and Fitzgerald (1980);30 Woodcock et al. (2004)31See Table 1See Table 1See Table 1Emotional reactions included: fear, vulnerability, demoralization, worry, guilt, loss of confidence, dependence, uncertainty, anger, depression, anxiety, helplessness, worthlessness, emotional instability, psychic distress, personal stress, low levels of self-esteem, feeling burdensome, loss of independence.
Bernbaum et al. (1988)32n = 29 with PDR (n = 16 with severe but stable VI, n = 13 with moderate-severe, transitional VI).Quantitative, cross-sectional study. RSES, DST, MMPI, ZSDS, RMHI.To examine the differential psychological profiles of patients with stable and fluctuating VI.Overall, those with transitional vision loss manifested higher levels of psychological distress, especially depression, than those with worse yet stable vision.
Cox et al. (1998)33n = 111 with diabetes, n = 49 with DR (28 partially sighted, 21 blind).Quantitative, case–control study. BSI, HFS, PSSS.To evaluate whether level of VI from diabetes is associated with degree of psychological symptoms.Blind subjects reported more general psychological symptoms than the partially sighted and control groups, including somatization, anxiety, phobic anxiety and worry. High depression scores were found in all groups.
de Groot et al. (2001)34n = 10 studies that examined the relationship between depressive symptoms and DR.Meta-analysis of effect size based on Rosenthal procedures.To examine the strength and consistency of the relationship between depression and diabetic complications, including DR.Together, the 10 studies yielded a significant combined P-value (<0.0001; z = 3.84) and a small to moderate effect size. This suggests there is an interaction between depression and severity of DR. The association may be bi-directional.
Jacobson et al. (1985)35n = 150 with T1 diabetes, n = 74 with PDR.Quantitative, case–control study. LES, GHQ, SCT.To evaluate the relationship between psychological factors and glycaemic control in diabetic patients with and without severe DR.Those with PDR reported significantly more psychiatric symptomology than those without PDR. In addition, patients with recent progression to PDR with transitional vision reported more negative life events. This in turn was associated with worse levels of glycaemic control.
Luckie et al. (2007)36n = 308 with T1 or T2 diabetes, n = 29 had VTDR and 142 had non-VTDR.Quantitative, cross-sectional study. Two items from a larger questionnaire.To describe the relationship between fear of visual loss, and VA and severity of DR.Fear of vision loss is a common and complex phenomenon in the diabetic population. However, objective measures like VA and level of DR were not consistent predictors of fear.
Robertson et al. (2006)37n = 51 with diabetes, n = 27 with DR.Quantitative, cohort, longitudinal, observational study. Brief COPE, HADS, SF-36, IADL, SADS.To examine psychosocial adjustment and changes in ADLs in relation to vision loss in diabetics compared with vision loss from other conditions.Psychological morbidity was high for all participants with vision loss at baseline and 1-year follow-up, although higher levels of depression were reported in the diabetic group at baseline. The diabetic group also reported more disruption to functional activities and difficulty coping at baseline.
Scanlon et al. (2006)38n = 156 with PDR or DMEQualitative, 227 semi-structured interviews.To explore patients' experience of DR and laser treatment.Many participants reported fear of vision loss and laser treatment, anger, irritation and shock. First-time laser patients experienced a reduction in some of these emotions whereas multi-treatment patients experienced an increase in anxiety and worry.
Trento et al. (2006)39n = 259 with DR; n = 131 awaiting laser treatment and n = 138 controls awaiting a non-intervention visit.Quantitative, case control study. HADS, FA-LTE, STAI-1/2.To investigate perceptions of laser treatment in terms of anxiety and awareness in DR patients both awaiting and not awaiting treatment.High levels of anxiety were detected, particularly in women and people with less education. A previous experience of laser treatment did not modify anxiety. Most patients had a negative reaction to laser and associated it with cruelty and pain.
Qualitative, open-ended questions about laser treatment.
Wulsin et al. (1987)40n/aReview studyTo examine the available studies on the psychosocial aspects of DR.The evidence suggests that certain events in the course of DR are likely to be particularly stressful e.g. onset of DR, fluctuations in vision and sudden VI. Both partial and severe impairment are associated with serious psychological problems.
Wulsin et al. (1993)41n = 47 with PDR.Quantitative, cross-sectional study. PAIS.To identify adjustment problems in patients with advanced PDR and examine to relationship between adjustment and VA.Compared with a normative diabetic sample, those with PDR reported significantly worse psychosocial function. No difference in scores between patients with recent loss and stable vision was observed. VA level was significantly correlated with psychosocial function and even patients with mild VI reported worse functioning.
Table 3.  Literature review findings on the impact of DR using socioemotional subscales
Study detailsPatient characteristicsStudy type and outcome measure(s)Aim of studyBrief summary of findings
  • Studies are ordered alphabetically within each topic subsection. AMD, age-related macular degeneration; DME, diabetic macular oedema; DR, diabetic retinopathy; HRQoL, health-related QoL; IVI, Impact of Vision Impairment questionnaire; NEI-VFQ-25, National Eye Institute Vision Function Questionnaire-25; QoL, quality of life; VA, visual acuity; VRQoL, vision-related QoL.

Broman et al. (2002)42Diabetes type unspecified, n = 290 with DR.Quantitative, population-based survey. NEI-VFQ-25 (scores out of 100, higher scores indicate less disability).To assess the impact of VA impairment and eye disease on VRQoL in a Hispanic population.Patients with DR had significantly lower scores than those with no eye disease in all four socioemotional subscales: role difficulties −10.2; dependency −8.7; social functioning −4.92; and mental health −9.73. These detriments were not explained by level of VA.
Gabrielian et al. (2010)43Type 1 and Type 2 diabetes, n = 104 with DR.Quantitative, cross-sectional study. NEI-VFQ-25.To compare VRQoL between patients with NPDR and PDR.Patients with PDR had significantly lower scores than those with NPDR in all four socioemotional subscales: role difficulties −30.2; dependency −30.7; social functioning −27.3; and mental health −34.2. These detriments were not explained by level of VA.
Hariprasad et al. (2008)44Type 2 diabetes, n = 33 with DME.Quantitative, prospective observational study. NEI-VFQ-25.To determine the impact of DME on QoL in patients with Type 2 diabetes compared DR in Type 1 diabetic patients and other eye pathology such as glaucoma, cataract and AMD.Scores for the DME group were significantly lower in all four socioemotional subscales than for those with DR (Type 1 diabetes) glaucoma, cataract group and the reference (no DR) group. Scores for the DME group: role difficulties 61; dependency 67; social functioning 74; and mental health 56.
Hirai et al. (2010)45Type 1 diabetes, n = with DR unreported.Prospective cohort study. NEI-VFQ-25.To investigate changes in VRQoL during a 10-year period in a sample of people with Type 1 diabetes.Change in visual acuity was the most important factor related to negative changes in all subscales. Loss of 3 lines was associated with significant reductions of −10.19, −6.90, −3.06 and −6.06 points for the mental health, role difficulty, social functioning and dependency subscales.
Klein et al. (2001)46Type 1 diabetes, n = 599 with DR.Population-based cohort, cross-sectional results. NEI-VFQ-25.To examine the association between VA and DR using the NEI-VFQ.Scores on the NEI-VFQ socioemotional domains were relatively high. However, in univariate analyses, scores systematically declined as severity of DR increased and if macular oedema was present.
Lamoureux et al. (2004)47Diabetes type unspecified, n = 45 with DR.Quantitative, cross-sectional study. IVI.To determine the restriction of participation in daily activities in people with DR.Participants reported relatively poor scores on the Emotional Reaction to Vision Loss domain of the IVI. The items of most concern to participants were worry about eyesight getting worse, frustration and feeling like a burden. In contrast, items about depression, embarrassment and isolation were not as important to participants.
Matza et al. (2008)48Type 1 and Type 2 diabetes, n = 535 with DR.Randomized controlled trial. NEI-VFQ-25.To ascertain the degree of change in HRQoL associated with loss of VA among patients with DR.Loss of VA was associated with corresponding changes in the four socioemotional subscales. Compared with patients whose VA did not change, the group with >10 letters vision loss had reductions of: social functioning −11.2; mental health −17.5; role limitations −21.5; and dependency −26.1.
Mazhar et al. (2010)49Type 2 diabetes, n = 486 with DRPopulation-based Latino cohort, cross-sectional results. NEI-VFQ-25.To assess the impact of DR and its severity on HRQoL among Latino patients with Type 2 diabetes.More severe DR was associated with worse scores in all four socioemotional subscales: reductions in β coefficients were largest for the dependency (−1.34) and mental health (−1.34) subscales.

Impact of DR on social well-being

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Social life

In four qualitative studies, patients with DR have reported difficulty maintaining social interaction and disintegration of their social lives. For example, focus group participants have described increased social isolation as a result of no longer being able to drive due to DR.26,31 Recently Devenney et al.27 found that practical difficulties associated with patients participating in social activities led them to withdraw from social situations and consequently become more socially isolated. Similarly, patients undergoing group therapy for DR reported that negative public reactions to vision loss and perceived social stigma fostered feelings of isolation.30 Patients have also described anxiety over maintaining friendships or acquaintances, or meeting new people because of difficulty recognizing faces,31 or because of becoming more dependent and feeling burdensome.27 Younger participants with DR described visual impairment as a major deterrent to finding potential partners and forming romantic relationships.30 Aside from these qualitative studies, no systematic exploration into the impact of DR on patients' social lives has been conducted to date.

Family life

Qualitative evidence also suggests that the lifestyle changes associated with DR may often result in increased stress, tension and irritation between family members; and a worsening of family relationships.26,30,31 Individuals with DR have also reported feeling suffocated from excess family attention and fuss over their condition.30 Others have felt a shift in relationship structure as a result of not being able to perform usual family roles and responsibilities due to vision loss from DR.26,27,31 Problems with maintaining extended family relationships have also been reported, mainly because of difficulty with transport logistics. Some participants also questioned their ability to nurture an intimate relationship because of the emotional strain of grieving over vision loss.30,31 However, in some cases, DR improved family relationships by bringing members together in a network of caring and kindness.26

Three quantitative studies corroborated some of these qualitative findings. For example, in a small cross-sectional study (n = 22), Bernbaum et al. found that family functioning as assessed by the 60-item family assessment device was significantly worse in those with vision loss from diabetes than in a normative population, especially in the areas of problem solving, communication, role maintenance and overall functioning level.24 They also reported a higher prevalence of divorce in their study group compared with a normal population level. Moreover, several participants identified visual impairment as the major factor in the deterioration of their marriage.24 In a large cohort study (n = 1240), Klein et al. found that married women with young-onset diabetes and visual impairment were at a high risk of divorce compared with young married men over a 4-year time period.29 Evidence from these studies suggests that DR has a detrimental impact on family functioning, personal relationships, role maintenance within the family unit and may be a contributor to marriage dissolution.

Work life

Qualitative research has produced mixed results regarding the impact of DR on work prospects. Both Woodcock et al. and Devenney et al. have reported that patients' eye problems have a major impact on their working life and, in some cases, were the main causes of unemployment and loss of income, usually as a result of no longer being able to drive.27,31 In contrast, participants from other focus groups reported that DR did not impact on work or financial prospects.26 These contradictory findings may be explained by differences in sample characteristics between the two studies. For instance, in both Woodcock's and Devenney's study, most participants had vision-threatening DR such as PDR or clinically significant DME; and substantial visual impairment in contrast to the other study that had only four participants with PDR. Furthermore, most participants in the second study were aged over 60 and retired.

Only a handful of quantitative studies have explored this issue. In their 4-year cohort study (n = 1240), Klein et al. found a significant trend of more unemployment in men (but not women) with more severe DR at baseline. For example, men with PDR at baseline had a 17.1% incident risk of unemployment at follow-up compared with those with no DR.29 Similarly, in an earlier cohort study (n = 2366), the same group of investigators showed that the presence of PDR was significantly related to higher rates of early retirement due to disability in adults with younger-onset diabetes as well as in men with older-onset diabetes.28 A recent cross-sectional study (n = 252) has found that working-aged adults with DR are considerably more likely to be unable to work than individuals with diabetes without DR.25 Overall, the limited available evidence suggests that people with severe DR such as PDR and clinically significant DME may experience difficulty maintaining employment, unwanted premature retirement and financial burden as a result.

Impact of DR on emotional well-being

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

A range of negative emotional reactions associated with DR have been identified in qualitative studies, including fear, depression, anger, mood swings, guilt, loss of independence, awkwardness, irritation, feelings of inferiority and hostility, feelings of being burdensome, loss of confidence and self-esteem, frustration, vulnerability, demoralization, difficulty coping, worry, worthlessness, vulnerability, anxiety and stress.26,27,30,31 Focus group participants have also described fear and anxiety relating to laser photocoagulation treatment for DR.38,39

Quantitative studies have also documented an association between DR and emotional well-being. A meta-analysis (2001) of 10 studies examining the relationship between depressive symptoms and DR found a consistent, statistically significant relationship between depression and DR.34 Other studies have reported an association between DR and depressive symptoms,24,32,33,37 distress,24,32 psychiatric symptomology,35,41 anxiety,33,39 stress,24,40 somatization, phobic anxiety and worry,33 emotional instability,24 fear/worry36 and low self-esteem.24 Cumulatively, these findings suggest that vision loss from DR triggers a spectrum of emotions, from fear and anger to sadness and issues of self-perception. Moreover, although the link between clinical depression and DR is clearly important, it is likely that these other emotional reactions may be equally detrimental to patients' emotional functioning.

Factors associated with emotional well-being

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Several studies included in this review also investigated particular aspects associated with reduced emotional well-being in DR patients. For example, predictors of impaired emotional well-being due to DR may include the severity of DR; degree of visual impairment; and the fluctuating nature of vision loss,40 although the evidence is limited and often contradictory. For instance, a recent study has reported a 30-point reduction in the mental health and social subscales of the National Eye Institute Vision Functioning Questionnaire (NEI-VFQ) in those with PDR compared with NPDR,43 and two small studies reported that patients with late stage DR, such as PDR, displayed significantly more psychiatric symptomology than those with background or minimal NPDR.35,41 Similarly, another small case–control study found that patients with total vision loss from DR exhibit higher levels of somatization, anxiety and phobic anxiety compared with those with only partial visual impairment or those without DR. However, the same study also found high levels of depressive symptoms in all three groups.33 Similarly, even mild levels of visual impairment have been associated with worse psychosocial function.41 In addition, fluctuating visual acuity or recent loss of vision appear to manifest higher degrees of psychological distress irrespective of the level of visual acuity or severity level of DR,32,35 although the evidence is not conclusive.41 These equivocal results are probably due to the very small sample sizes of these studies (ranging from n = 22–74), and the range and quality of outcome measures used (n = 11, none of which is comparable across studies, and the use of traditional psychometric methods in scale development and validation).

Impact of DR on socioemotional functioning using questionnaires

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

The socioemotional impact of DR has more recently been explored indirectly as part of vision-related QoL investigations using various QoL outcome measures. For example, several studies have reported data on the DR-specific decline in mental health, roles and social life subscales, which fall under the definition of emotional and social well-being as used in this review. For example, seven studies have explored the socioemotional impact of DR using the well-known vision-specific QoL instrument, the NEI-VFQ. Overall, scores in the four psychosocial domains (mental health, social function, role difficulty and dependency) were compromised in patients with DR or DME, particularly in those with greater vision loss and disease severity.42–46,48,49 Indeed, the results were so striking in one study that the authors concluded ‘This finding reiterates the impact of DR of emotional well-being and security in addition to visual function’.43 Similarly, Lamoureux et al. reported significant vision-specific distress related to DR using the Impact of Vision Impairment. Items with the highest difficulty in this sample included those relating to frustration with eyesight, worry about eyesight getting worse and feeling like a nuisance or burden.47 However, the number of items comprising the socioemotional domains of these outcome measures is generally small and are unlikely to capture the full social and/or emotional impact of DR. Moreover, low vision instruments such as the Impact of Vision Impairment were developed using primarily older, retired individuals. However, people with DR tend to be younger and still in the education system or workforce coping with a plethora of vision-related issues not captured by the current range of items.

Discussion

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Overall, this review indicates that DR and associated vision loss have several debilitating effects, including disruption of family functioning, relationships and roles; increased social isolation and dependence; and deterioration of work prospects resulting in increased financial strain. A number of adverse emotional responses have also been reported, including depressive symptoms, distress and anxiety. Vision-threatening stages of DR and fluctuating visual acuity seem to be particularly important factors associated with impaired emotional functioning. However, the majority of reviewed studies were qualitative in nature, and most of the quantitative studies focussed only peripherally on social and emotional issues. Similarly, several quantitative studies have been conducted more than a decade ago and many were limited by their cross-sectional design and small sample size. Because of the wide range of outcome measures used, a meaningful comparison of results is difficult. Consistent findings are therefore equivocal and several large gaps in knowledge remain suggesting that better designed studies are needed in the future to provide a more compelling understanding of the social and emotional implications of DR.

Without a better understanding of ‘how’, ‘when’, ‘to what extent’ and ‘for whom’ DR impacts on social and emotional well-being, well-targeted and timely patient interventions, appropriate social support services and effective policy planning will prove difficult. Additionally, the content of psychosocial treatment interventions is likely to be suboptimal. For example, many intervention programmes for psychological aspects of comorbid disease focus primarily on depression and depressive symptoms. However, recent work by Fisher et al. suggests that many people with diabetes are not clinically depressed but instead display high levels of ‘diabetes distress’,22,50,51 stemming from the emotional and interpersonal burden of diabetes, and issues to do with physician interaction and treatment regimen. For example, many people experience considerable frustration with the ongoing obligations of diet, physical activity, blood glucose monitoring, and taking medication or fears about the future and developing complications, over-fussing by friends and family members, fatigue, burnout, and feeling overwhelmed because of the demands of self-management.52 Moreover, it is diabetes distress, rather than depression, that is significantly associated with glycaemic control.53 It is likely that a similar phenomenon exists for diabetes complications. Therefore, interventions and low vision services targeting ‘DR-specific distress’, which focus more on the socioemotional impact of DR rather than clinical depression may potentially be of significant benefit to a wider range of patients. Diabetic educators may also play an important role in counselling diabetic patients experiencing emotional and social strain from DR.

Clearly, a substantial body of high-quality research systematically investigating the specific type, extent and factors associated with social and emotional impact of DR on patients is necessary before policies, interventions and the efficacy of new treatment modalities can be fully informed. However, future research may be hindered by the lack of an appropriate outcome measure to accurately and precisely assess the social and emotional impact of DR. This particular issue was also highlighted in a recent related review on the psychosocial impact of visual impairment in working-aged adults and it represents a key barrier to overcome.9 Although many vision-specific patient-reported outcome measures are available, most have little content relating to emotional and social issues, health concerns and economic impact; rather they focus primarily on activity limitation, mobility and symptoms. Similarly, most current QoL outcome measures have undergone minimal validation using only a traditional psychometric approach, Classical Test Theory (CTT). Because we rely on subjective reports of QoL from the patient's perspective through a patient-reported outcome measure, if the outcome measure is suboptimal in content or in validity, we cannot be confident that the results we receive are meaningful or accurate; consequently they are of limited use for informing clinicians, interventions or policy.

Validation of outcome measures using only CTT is problematic because CTT harbours several erroneous assumptions and several scales in ophthalmology have been shown to function suboptimally when subjected to modern psychometric methods.54,55 First, CTT assumes that all items are of equal difficulty and therefore scores them equally; however, modern psychometric theory has shown this to be incorrect. For example, Rasch analysis has demonstrated that driving during the day is an easier task than driving at night and, if a participant reports a little difficulty with the former, this is not equivalent to a little difficulty with the latter.56,57 Second, CTT assumes erroneously that the change between response categories (e.g. no difficulty, some difficulty, extreme difficulty) is uniform and therefore their allocated values can be summed to provide an overall score, which represents a valid measurement of the underlying latent trait.58 In this way, the overall summed score is treated as if it were an interval rather than simply an ordinal scale.58 Additionally, CTT lacks strong indicators of scale validity or unidimensionality. The most commonly reported statistic is Cronbach's alpha, which indicates scale reliability. However, Cronbach's alpha can be artificially inflated by redundancy and local dependence of items.59,60 Finally, because paper-based questionnaires contain only limited items, they often fail to optimally target participants' ability level across the spectrum of disease severity.

Modern psychometric methodologies such as Rasch analysis have addressed many of the issues associated with CTT. Rasch analysis calibrates item difficulty and person ability on the same interval scale, and has strict criteria that a scale must satisfy before it provides a unidimensional and valid measurement.52,53 However, this ‘second generation’ approach still retains some of the limitations of static, restricted scales. A ‘third generation’ approach uses techniques including item banking and computer adaptive testing (CAT) to bypass the limitations of paper-pencil questionnaires. An item bank is simply a large pool of items that have been calibrated for difficulty using Rasch analysis and is operationalized by the use of CAT. CAT is an interactive method of administering test items by adapting the questions asked to the examinee's ability level based on their previous responses.61 Item banks are better able to target individual participant ability and require fewer items to arrive at a more precise, accurate, valid and fair assessment than paper-pencil questionnaires.62–65

An item bank measuring DR-specific socioemotional well-being would be an ideal tool to investigate the impact of DR on family life, social interaction and work functioning, as well as the range and severity of emotional reactions to DR. The large number of items in the bank and flexibility in their use would far surpass those of any existing scales, ensuring comprehensive coverage, good targeting and high reliability. The strict requirements of the Rasch model would provide valid and unidimensional measurement. Finally, the condition-specific nature of the bank would ensure that items were suitable and relevant to both younger and older age groups.

Conclusion

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

The current evidence suggests that DR has a considerable impact on patients' emotional and social well-being. However, the research to date has substantial limitations and the specific processes underlying the associations are unknown. More qualitative research identifying the QoL issues affected by DR incorporated into better developed outcome measures is needed to determine the specific nature and predictors of the social and emotional impact of DR. An improved understanding of the type and extent of the social and emotional impact of DR may assist policy planners, rehabilitation workers and researchers in the development of suitable intervention strategies to improve QoL outcomes for people with DR. This will have positive implications for patients' clinical outcomes, disease management and overall well-being, as well as reduced healthcare costs for society.

References

  1. Top of page
  2. A
  3. Introduction
  4. Method of literature search
  5. Impact of DR on social well-being
  6. Impact of DR on emotional well-being
  7. Factors associated with emotional well-being
  8. Impact of DR on socioemotional functioning using questionnaires
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References