Social and emotional impact of diabetic retinopathy: a review

Methodological quality of the review: Low confidence

Author: Fenwick E, Rees G, Pesudovs K, Dirani M, Kawasaki R, Wong TY, Lamoureux E.

Region: Details not provided

Sector: Diabetic retinopathy

Sub-sector: Mental health, depression, diabetes, stress, anxiety, social impact.

Equity focus: None specified

Review type: Effectiveness review

Quantitative synthesis method: Narrative analysis

Qualitative synthesis methods: Not applicable

Background

People with vision-threatening diabetic retinopathy (DR) are likely to experience enhanced social and emotional strain. However the emotional and health consequences of DR have not yet been systematically explored.

Research objectives

To review the current qualitative and quantitative evidence regarding the social and emotional impact of diabetic retinopathy and identify directions for future research.

Main findings

Authors included cross sectional, case-control, cohort studies and population-based surveys which described any aspect of social and emotional impact or discussed the impact of DR on social and emotional domains of a validated quality of life (QoL) instrument. Authors did not report the total number of studies included in the review.

Four qualitative studies reported that patients with DR had difficulty maintaining social interaction and reported disintegration of their social lives. Aside from these qualitative studies, no systematic exploration into the impact of DR on social lives had been conducted. Qualitative evidence also indicated that lifestyle changes associated with DR resulted in a worsening of family relationships. Three quantitative studies corroborated some of these findings. Qualitative research around the association of DR and work prospects had produced mixed results. Qualitative studies also reported that a range of negative emotions associated with DR existed, including fear, depression, anger, mood swings, guilt, loss of independence, awkwardness, irritation, feelings of inferiority and hostility among others.

Overall, based on findings, authors concluded that DR may have a considerable impact on patients’ emotional and social well-being. However, the research had substantial limitations and the specific processes underlying the associations were unknown. More qualitative research identifying the QoL issues affected by DR incorporated into better developed outcome measures was needed to determine the specific nature and predictors of the social and emotional impact of DR.

Methodology

Authors conducted a search on several relevant electronic databases including PUBMED and EMBASE, with no date were applied and articles in languages other than English were not considered. Grey literature was not considered in order to ensure the scientific merit of the reported findings. Studies were included if they (1) were qualitative or quantitative; (2) provided scientific data for DR or DME; and (3) described any aspect of social and emotional impact or discussed the impact of DR on social and emotional domains of a validated QoL instrument. Bibliographies of relevant papers were also scanned for additional relevant papers.

Data was extracted for each study including: authors, year, patients’ characteristics, and study design and outcome measures. Due to the wide range of outcome measures used in the included studies, authors recognized that meaningful comparison between the studies was difficult. As such, authors conducted a narrative summary of the review findings.

Applicability/external validity

The authors did not discuss the applicability/external validity of the results. However, it was clear from the review that the quantitative studies included in the review focused only peripherally on social and emotional issues and was not necessarily the main focus of the research. Additionally, authors also noted that some of the included studies were published more than a decade ago.

Geographic focus

Authors did not report the geographical focus of the studies included in the review.

Quality assessment

A low confidence was attributed to the conclusions about the effects of this review as major limitations were identified. The literature search, although covering relevant electronic databases, was not sufficiently comprehensive that we could be confident that relevant studies were not omitted. It was not clear from the review if screening of articles as well as data extraction of included studies was conducted by two authors independently. Additionally, quality and risk of bias assessment of included studies was not reported.

Studies included in the review are largely qualitative, using suboptimal outcome measures. Most of the quantitative studies focused only on social and emotional issues; and similarly the qualitative studies were conducted more than a decade ago and were limited by their cross-sectional design and small sample size. Due to the wide range of outcome measures used within the included studies, authors note that comparisons were made difficult.