The experience of diabetic retinopathy: A qualitative study (original) (raw)
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Ophthalmology and Therapy
Introduction: Few qualitative studies have explored the patient experience of daily life with proliferative diabetic retinopathy (PDR) and associated treatments. Herein, a conceptual model was developed to comprehensively examine symptoms, functional impacts, and treatment experiences in PDR. Methods: A qualitative, mixed-methods study comprising a literature search and semi-structured interviews with clinicians and patients was conducted. Published literature and online patient resources were searched to identify concepts relevant to patients, including symptoms, functional impacts, and treatment experiences of PDR. Semi-structured interviews with experienced clinicians were conducted to identify symptoms and impacts reported by patients with PDR and to receive feedback regarding concepts identified from the literature search. A preliminary conceptual model was then developed based on findings from the literature search and clinician interviews. Patients with PDR participated in two rounds of semistructured interviews to identify additional concepts relevant to the patient experience in PDR and associated treatments, which informed revisions to the conceptual model. Saturation of patient interviews was assessed. Results: Findings from the literature search and clinician interviews yielded 109 concepts that were included in a preliminary conceptual model with three overarching domains: symptoms, impacts, and managing the disease. Clinicians confirmed concepts identified from the literature search. During interviews, patients reported a broad spectrum of symptoms (e.g., red vision); functional impacts relating to activities of daily living (e.g., reading), emotional functioning (e.g., loss of independence), and social functioning (e.g., problems recognizing faces); and treatment experiences (e.g., improves eye problems, no change) associated with PDR. Additional concepts elicited in patient interviews informed revisions to the conceptual model. Saturation was achieved in the patient sample. Conclusions: A wide variety of symptoms, functional impacts, and treatment experiences that significantly affect health-related quality of
The impact of diabetic retinopathy: perspectives from patient focus groups
Family …, 2004
Background. Diabetic retinopathy (DR) affects 50-85% of people with diabetes and may result in visual impairment or blindness. Objective. This exploratory qualitative research was conducted to evaluate the symptom experience of DR, its impact on daily activities and health-related quality of life (HRQL), and the applicability of two vision-specific questionnaires. Methods. Four focus groups (n = 15) were conducted with people with DR to explore their symptom experience and the impact on functioning and HRQL. Adults with type I or II diabetes and mild, moderate or severe non-proliferative DR (NPDR) or proliferative DR (PDR) were recruited. Content analysis and descriptive statistics were used to analyse the data. Results. Participants described a range of symptoms and impact. Difficulty driving, especially at night, and trouble reading were noted with all levels of severity. Participants with PDR and decreased visual acuity have foregone many other important life aspects such as work, reading and sports. For the severely affected, diabetic care activities (e.g. exercising, reading nutritional labels, preparing insulin injections and glucose testing) were difficult to accomplish. Loss of independence, especially mobility and increased fear of accidents, had a profound impact on social activities. For those patients who had not experienced other complications of diabetes, the threat of vision loss was the most devastating. Conclusion. The loss of independence and mobility associated with decreased visual functioning and visual loss were major concerns. Moderate, severe NPDR and PDR associated with visual impairment have a significant impact on HRQL, particularly in the areas of independence, mobility, leisure and self-care activities.
Psychosocial adjustment to advanced proliferative diabetic retinopathy
Diabetes Care, 1993
OBJECTIVE-To identify the major problems with adjustment to the advanced stages of proliferative diabetic retinopathy and to examine the relationship between adjustment and visual acuity. RESEARCH DESIGN AND METHODS-A cross-sectional descriptive cohort study was conducted at the referral-based eye unit at Joslin Diabetes Center in Boston, Massachusetts. We studied 47 adults with IDDM and advanced proliferative diabetic retinopathy. Thirty reported recent visual loss, and 17 had more stable vision. RESULTS-Psychosocial Adjustment to Illness Scale scores were significantly elevated relative to a normative diabetic sample (t = 2.94, P < 0.01). Our proliferative diabetic retinopathy sample reported the most difficulties in the domain of health-care orientation. No significant differences were observed in adjustment scores between those with recent partial visual loss and those with more stable vision. However, visual acuity in the best eye correlated significantly with the proliferative diabetic retinopathy sample's total adjustment score (r =-0.34, P = 0.02) and with 4 of 7 adjustment subscales. CONCLUSIONS-These results suggest that advanced proliferative diabetic retinopathy may be associated with particular difficulties in adjustment that are more related to best visual acuity than to recent visual loss. Relatively mild visual impairment may have significant psychosocial impact.
Diabetes Spectrum, 2017
Nonproliferative and proliferative diabetic retinopathy (DR) are common, progressive complications of diabetes with a rising incidence. Over time, patients with nonproliferative DR may progress to more advanced stages of DR, with an increased risk of vision-threatening conditions such as diabetic macular edema (DME). DME is the most frequent cause of vision loss in patients with diabetes and eventually can lead to blindness. Early-stage DR is asymptomatic; therefore, a coordinated management strategy is crucial to prevent or limit the progression of DR. Such a strategy includes regular screening for DR risk factors, glycemic control, and prompt diagnosis of DR. Preventive care should include a comprehensive dilated eye exam, ancillary tests, and patient education involving a multidisciplinary team composed of ophthalmologists, retina specialists, and primary diabetes care providers, including primary care providers and endocrinologists/diabetologists. However, although guideline rec...
Retinopatia diabética e deficiência visual entre pacientes de programa de reabilitação
Revista Brasileira De Oftalmologia, 2011
Objective: To assess the prevalence of diabetic retinopathy and to evaluate the management of patients with visual disabilities attending at the CEPRE Rehabilitation Program of University of Campinas. Methods: A retrospective study was carried out based on medical records of patients with visual disabilities attending a vision rehabilitation program. The following variables were studied: gender, age, marital status, level of schooling, social security status, origin, type and cause of visual disability and vision rehabilitation actions. Results: The sample consisted of 155 patients, 55.5% males, aged between 12 and 88 years, mean age 41 years old, 34.8% were blind and 65.2% with low vision disability. Of those blind patients, 81.8% reported acquired blindness, and the leading cause was diabetic retinopathy (33.3%), followed by glaucoma (16.6%), and retinal detachment (15.0%). Of those patients with low vision disability, 14.9% had diabetic retinopathy, 14.9% hereditary syndromes, and 10.9% age-related macular degeneration. Vision rehabilitation therapy included interdisciplinary team consultations helping patients go through the mourning process for the loss or impairment of vision, and promoting the enhancement of their skills for performing activities of daily living independently. The management of patients with low vision was also focused on vision rehabilitation. Conclusion: The health of the eyes of patients with chronic diseases such as diabetes is at risk. The prevalence of diabetic retinopathy was found to be a cause for visual disability, suggesting the need to assess these patients' access to health care and rehabilitation and promote health education for changing habits and improving quality of life.
IP Innovative Publication Pvt. Ltd., 2018
Aims and Objective: To evaluate awareness of DR among a sample of T2DM in Karnal. Materials and Methods: Two hundred and forty seven diabetic patients were studied at Bharti Hospital and from Jan 2017 to July 2017. Details on awareness about DR, screening for DR, last ophthalmological evaluation, report of screening by fundus photography, quality of fundus photo and reason for poor quality were recorded. Results: Mean age of study cohort was 53.95±10.42 years. Most common age group was 51-60 (33.20%). Most of the diabetes patients knew that diabetes causes eye problem (80.16%), of them only 55.56% knew specifically diabetes causes retinopathy, diabetes causes Glaucoma (57.07%) and diabetes predisposes to cataract (68.69%). Further evaluation regarding awareness of symptoms revealed that most of them were aware regarding the blurred vision (72.22%) and blindness (68.18%), whereas most of the patients were not aware about the floating black dots/lines (78.79%), fluctuation of vision (85.86%), dark or empty spaces in the visual field (86.87%), difficulty in perception of image (86.36%), double vision (84.85%) and eye pain (79.89%). Duration of DM is related to eye disease (69.70%), dietary control and life style modifications are important for control of diabetes (76.77%), whereas 67.68% were unaware that the eye problem can be controlled/avoided with regular medication and diabetic control. Conclusion: Awareness of DR and associated factors especially symptoms of DR are less among the T2DM patients of study place. It is very important to spread the awareness regarding DR though various means of communication in order to decrease the prevalence of DR. Keywords: Disease awareness, Diabetes mellitus, Eye problem, Retinopathy.
The impact of diabetic retinopathy: understanding the patient's perspective
British Journal of Ophthalmology, 2011
Understanding the impact of a condition from the patient's perspective is important, and different types of patient-reported outcomes or instruments are available to help with this. This review article summarises the current evidence on the impact of diabetic retinopathy (DR) and its associated vision impairment on patientreported outcomes. We have included research that has used a range of outcome measures to assess the impact of DR on generic health-related quality of life, utility, vision-functioning and vision-specific quality of life. This review also offers clarification on frequently misused psychometric terminologies to help clinicians and researchers better understand the literature associated with patient-reported outcome research. Overall, the evidence suggests that DR, particularly in its visionthreatening stages, has a substantial, negative impact on the patient. However, our understanding of the impact of DR is currently restricted due to limitations inherent in currently available patient-reported outcome measures. We conclude by discussing potential directions for future research in this area, such as item banking and computer adaptive testing.
Diabetic Retinopathy and the Cascade into Vision Loss
Medical Anthropology, 2018
Vision loss from diabetic retinopathy should be unnecessary for patients with access to diabetic retinopathy screening, yet it still occurs at high rates and in varied contexts. Precisely because vision loss is only one of many late-stage complications of diabetes, interfering with the management of diabetes and making self-care more difficult, Vision Threatening Diabetic Retinopathy (VTDR) is considered a "high stakes" diagnosis. Our mixed-methods research addressed the contexts of care and treatment seeking in a sample of people with VTDR using safety-net clinic services and eye specialist referrals. We point to conceptual weaknesses in the single disease framework of health care by diagnosis, and we use the framework of "cascades" to clarify why and how certain non-clinical factors come to bear on long-term experiences of complex chronic diseases.
Diabetics Retinopathy Knowledge and Awareness Assessment among the Type 2 Diabetics
Open access Macedonian journal of medical sciences, 2018
Diabetic retinopathy (DR) is a leading cause of blindness worldwide. In Saudi Arabia and other Arab countries, several studies estimated the prevalence of DR ranging from 30 - 40%. To assess the DR knowledge and its association with diabetes control among Type 2 diabetic patients. A cross-sectional study of patients with Type II diabetes (T2D) who had a routine visit to the endocrine clinic to assess the DR knowledge and its relation to the glycemic control. We used a questionnaire that was used in previously published studies, and the reliability was assessed using the alpha Cronbach coefficient. Patients who answered correctly > 60% were considered to have good knowledge about DR. Total of 253 patients participated, 43.4% has diabetes > 10 years and 30.7% have it for 5 - 10 years, 36.4% did college degree or higher, 40.8% considered having low income. 37.7% of participants were not screened for the DR in the past year. 28.4% of participants think that seeing optometrist is e...