Underutilization of and lack of access to low vision services (LVS) has been reported internationally. The purpose of this study was to identify barriers and facilitators in LVS referral procedures ...and service delivery from both the perspective of people with visual impairment and professionals from different eye care providers in the Netherlands.
A qualitative study in the Netherlands was conducted. Barriers and facilitators were explored through semi structured interviews with older adults with macular degeneration, diabetic retinopathy and/or glaucoma (n = 14), and healthcare professionals including ophthalmologists and LVS professionals (n = 16). Framework analysis was used for analyzing the interviews with Atlas.ti software.
According to both patients and professionals, facilitators in LVS access and utilization are having motivation, self-advocacy, high participation needs and social support, as well as being negatively impacted by the impairment. Both samples found having good communication skills and informing patients about LVS as a healthcare provider to facilitate access. A long patient-provider relationship and the Dutch healthcare system were also mentioned as facilitators. Professionals additionally found long disease duration and the presence of low vision optometric services in the ophthalmic practice to promote access. Barriers that were reported by patients and professionals are lack of motivation, self-advocacy and acceptance of the impairment in patients. In addition, having low participation needs as a patient, lack of information provision by providers and time constraints in the ophthalmic practice were mentioned as barriers. Professionals also reported lack of social support, short disease duration of patients, a short patient-provider relationship and lack of coordination of care in the ophthalmic practice to hinder access.
Findings suggest that providers' lack of information provision about LVS, especially to patients who are less assertive, hamper referral to LVS. Providers should have attention for patients' LVS needs and actively inform them and their social network about LVS to facilitate access. Educating and training providers about how and when to address LVS may help to reduce barriers in the referral pathways. In addition, referral procedures may benefit from tools that make providers more aware of LVS.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Purpose Previous studies showed that older persons with vision loss generally reported low levels of health-related quality of life, although study outcomes with respect to feelings of anxiety and ...social support were inconsistent. The objective of this study was to examine the impact of low vision on health-related quality of life, including feelings of anxiety and social support, among community-living older adults seeking vision rehabilitation services. Methods Differences of activities of daily living (Groningen Activity Restriction Scale—GARS), symptoms of depression and feelings of anxiety (Hospital Anxiety and Depression Scales—HADS) and social support (Social Support Scale Interactions—SSL12-1) between 148 older persons ≥57 years with low vision and a reference population (N = 4,792) including eight patient groups with different chronic conditions were tested with Student's t tests. Results Older persons with vision loss reported poorer levels of functioning with respect to activities of daily living, symptoms of depression and feelings of anxiety as compared to the general older population as well as compared to older patients with different chronic conditions. In contrast, older persons with vision loss reported higher levels of social support. Conclusions Vision loss has a substantial impact on activities of daily living, symptoms of depression and feelings of anxiety. Professionals working at vision rehabilitation services may improve their quality of care as they take such information into account in their intervention work.
Abstract
Background
Over 50% of adults with visual impairment experience severe fatigue. Therefore, we developed a guided E-health intervention based on cognitive behavioral therapy and ...self-management to reduce fatigue in this population. This pilot study evaluated the usability, feasibility, fidelity and potential effectiveness of E-nergEYEze.
Methods
E-nergEYEze was developed by a design team and customized by conducting a pilot study using an iterative development strategy. The intervention was first tested in a usability study among adults with visual impairment (n = 5). Participants were asked to think-aloud while exploring the intervention features and a semi-structured interview was performed afterwards. Subsequently, the enhanced intervention was tested in a feasibility study. Adults with visual impairment and severe fatigue (n = 10) followed the intervention partially with guidance from a social worker and one-time computer trainer support. Fatigue severity (Checklist Individual Strength), fatigue impact (Modified Fatigue Impact Scale) and cognitive behavioral therapy skills (Competencies of Cognitive Therapy Scale-Self Report) were measured at baseline and at three months follow-up and analyzed with the Wilcoxon signed-rank test. The intervention was evaluated through evaluation forms.
Results
The usability study resulted in adjustments to content and lay-out with regard to optically shortened text sentences, separate pages for information and assignments with one read-aloud audio and an additional descriptive explanation of page content. Digital challenges were overcome with mandatory computer training and e-platform modifications. The feasibility study showed a positive trend in reducing fatigue severity (Z -6.108; P < .001; SD 8.4), impact of fatigue (Z − 4.451; P < .001; SD 11.4) and cognitive behavioral therapy skills (Z -2.278; P = .023; SD 19.3). Participants gave useful feedback regarding accessibility, content and guidance, with an overall positive experience. The intervention was rated with a median score of 8 (range 7–10).
Conclusion
We developed, evaluated and optimized E-nergEYEze by applying a user-centered and iterative approach. E-nergEYEze showed a promising trend to reduce fatigue severity and impact of fatigue and to increase cognitive behavioral therapy skills. The study methods were feasible and the fidelity of the intervention protocol was suitable. Performing a randomized controlled trial is warranted to give insight into whether E-nergEYEze is cost-effective in reducing severe fatigue in adults with visual impairment.
Trial registration
International Clinical Trial Registry Platform: NL7764. Date registered: 28-05-2019.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
With deteriorating eyesight, people often become dependent on others for many aspects of their daily lives. As a result, they feel less 'in control' and experience lower self-esteem. Lower sense of ...mastery and self-esteem are known to predict depression, but their roles in people with visual impairment have only marginally been investigated. Therefore, this study aimed to determine the influence of mastery and self-esteem on the relationship between visual acuity and mental health.
A longitudinal cohort study was performed using data from the Longitudinal Aging Study Amsterdam (LASA), collected between 2001 and 2012. A community-based population of 2599 older adults were included, who were randomly selected from population registers. Outcomes of interest were the Pearlin Mastery Scale, Rosenberg Self-Esteem Scale, Center for Epidemiologic Studies - Depression scale and the Hospital Anxiety Depression Scale - Anxiety subscale. Linear mixed models were used to establish the association between visual acuity and mental health over time.
Mean age was 72 years, 56% was female and 1.2% qualified as having low vision. Visual impairment was associated with a lower sense of mastery (β = - 0.477, p < 0.001), lower self-esteem (β = - 0.166, p = 0.008) and more depression (β = 0.235, p < 0.001). No significant association between visual acuity and anxiety was found. The relationship between visual acuity and depression was mediated by self-esteem (25%) and sense of mastery (79%).
Vision loss was associated with depression. This association was mediated by self-esteem and sense of mastery. This provides us with new possibilities to identify, support and treat those at risk for developing depression by aiming to increase their self-esteem and sense of mastery.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Visual impairment in childhood often has life-long implications. To aim for the highest levels of functioning, participation, and quality of life and to ensure children's well-being, children should ...be entitled to the most effective rehabilitation programs. We review evidence for the effectiveness of rehabilitation interventions for children with visual impairment to improve skills and behavior, thereby improving participation and quality of life as an ultimate goal. Of the 441 potentially relevant articles identified, 66 studies met our inclusion criteria (i.e., 28 randomized controlled trials, 18 nonrandomized controlled trials, and 20 before-after comparisons). The results suggest that sports camps, prescription and training in the use of low vision devices, and oral hygiene programs might be effective in improving functioning and elements of participation and quality of life in children with visual impairment. Other interventions showed mixed or negative results. The results should be interpreted with caution because of moderate to high risk of bias and suboptimal reporting. Heterogeneity of results and the use of over 50 different outcome measures prevented a meta-analysis. Future studies should focus on promising interventions for which effectiveness is still unclear (e.g., mobility, social skills), with adequately designed methodology.
Background
Patients suffering from exsudative retinal diseases may experience severe central vision loss and this might have impact on their daily activities and quality of life. To measure the ...disabilities these patients may have, the use of the Impact of Vision Impairment Profile questionnaire is recommended. The aim of this study was to translate the original English 28-item Impact of Vision Impairment Profile (IVI) into the Dutch language and evaluate its comprehensibility, comprehensiveness and relevance as evidence of content validity. The translation process was performed using standardized methods. Content validity was assessed by cognitive debriefing using a Three-Step Test-Interview (TSTI) method for participants diagnosed with exudative retinal diseases. Step 1 and 2 focused on assessment of comprehensibility of items, step 3 on comprehensiveness and relevance. Audio-recorded qualitative data was analyzed using Atlas.ti. Data regarding comprehensibility problems was further categorized into item-specific problems and general problems.
Results
Few minor discrepancies in wording were found after translation. After conducting 12 cognitive interviews, data saturation was reached. All participants reported comprehensibility problems resulting from specific items, these were; sentence structure, vocabulary and formulation, influence of conditions or composite items and influence of comorbid disorders. Several general comprehensibility problems resulting from instructions or response categories were detected. The main general comprehensibility problem resulted from the layout of the Dutch-IVI. Most participants considered the included items as relevant and indicated that they covered the problems that occur due to vision impairment.
Conclusions
Minor problems in the Dutch translation were detected and adjusted. The layout and instructions of the Dutch-IVI resulted in some comprehensibility problems. The Dutch-IVI appeared to be at risk of being interpreted as a generic patient reported outcome measure, instead of a disease-specific instrument, mainly due to the influence of co-morbidities. Adaptations should improve validity and reliability of the Dutch-IVI, however, cross-cultural comparisons may be at stake.
Improving shared decision-making (SDM) enables more tailored cancer treatment decisions. We evaluated a Time Out consultation (TOC) with the general practitioner (GP), between cancer diagnosis and ...treatment decision, which aims at supporting SDM and improving continuity of primary care. This study aims to evaluate the effects of a TOC on perceived SDM, information provision and self-efficacy.
This randomised controlled trial included newly diagnosed patients with curable cancer (breast, lung, colorectal, gynaecologic and melanoma) from four Dutch hospitals. Primary outcome is perceived SDM and secondary outcomes are information provision and self-efficacy.
One hundred fifty-four patients (control n = 77, intervention n = 77) - female: 75%, mean age: 61 (SD ± 11.9). In the intervention group, 80.5% (n = 62) had a TOC, of which 82.3% (n = 51) took place after treatment decision. Perceived SDM was lower in the intervention group (-8.9 95% CI: 0.6-17.1). Among those with a TOC before treatment decision (n = 11), perceived SDM was comparable to the control group (66.5 ± 27.2 vs. 67.9 ± 26.1).
Even though patients are motivated to have a TOC, implementing a TOC between diagnosis and treatment decision is challenging. Effects of a timely TOC could not be established. Non-timely TOC decreased perceived SDM. Planning of the TOC should be optimised, and future research should establish if adequately timed TOC results in improved SDM in cancer patients.
The growing number of cancer survivors and treatment possibilities call for more personalised and integrated cancer care. Primary care seems well positioned to support this. We aimed to assess the ...effects of structured follow-up of a primary care team after a cancer diagnosis.
We performed a multicentre randomised controlled trial enrolling patients curatively treated for breast, lung, colorectal, gynaecologic cancer or melanoma. In addition to usual cancer care in the control group, patients randomized to intervention were offered a "Time Out consultation" (TOC) with the general practitioner (GP) after diagnosis, and subsequent follow-up during and after treatment by a home care oncology nurse (HON). Primary outcomes were patient satisfaction with care (questionnaire: EORTC-INPATSAT-32) and healthcare utilisation. Intention-to-treat linear mixed regression analyses were used for satisfaction with care and other continuous outcome variables. The difference in healthcare utilisation for categorical data was calculated with a Pearson Chi-Square or a Fisher exact test and count data (none versus any) with a log-binomial regression.
We included 154 patients (control n = 77, intervention n = 77) who were mostly female (75%), mainly diagnosed with breast cancer (51%), and had a mean age of 61 (SD ± 11.9) years. 81% of the intervention patients had a TOC and 68% had HON contact. Satisfaction with care was high (8 out of 10) in both study groups. At 3 months after treatment, GP satisfaction was significantly lower in the intervention group on 3 of 6 subscales, i.e., quality (- 14.2 (95%CI -27.0;-1.3)), availability (- 15,9 (- 29.1;-2.6)) and information provision (- 15.2 (- 29.1;-1.4)). Patients in the intervention group visited the GP practice and the emergency department more often ((RR 1.3 (1.0;1.7) and 1.70 (1.0;2.8)), respectively).
In conclusion, the GRIP intervention, which was designed to involve the primary care team during and after cancer treatment, increased the number of primary healthcare contacts. However, it did not improve patient satisfaction with care and it increased emergency department visits. As the high uptake of the intervention suggests a need of patients, future research should focus on optimizing the design and implementation of the intervention.
GRIP is retrospectively (21/06/2016) registered in the 'Netherlands Trial Register' (NTR5909).
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The aim was to examine the association between physical and mental comorbidity with receiving low vision services (LVS).
A retrospective study based on Dutch claims data of health insurers was ...performed. We retrieved data (2015-2018) of patients (≥18 years) with eye diseases causing severe vision loss who received LVS at Dutch rehabilitation organizations in 2018 (target group) and patients who did not receive LVS, but who received ophthalmic medical specialist care for glaucoma, macular, diabetic retinal and/or retinal diseases in 2018 (reference group). For examining the association between the patients' comorbidities and receiving LVS, multivariable logistic regression was used. The relative quality of five different models was assessed with the Akaike Information Criterion (AIC).
The study population consisted of 574,262 patients, of which 8,766 in the target group and 565,496 in the reference group. Physical comorbidity was found in 83% and 14% had mental comorbidity. After adjustment for all assumed confounders, both physical and mental comorbidity remained significantly associated with receiving LVS. In the adjusted model, which also included both comorbidity variables, the best relative quality was found to describe the association between mental and physical comorbidity and receiving LVS.
Mental comorbidity seemed to be independently associated with receiving LVS, implying that the odds for receiving a LVS referral are higher in patients who are vulnerable to mental comorbidity. Physical comorbidity was independently associated, however, the association with receiving LVS might not be that meaningful in terms of policy implications. Providing mental healthcare interventions for people with VI seems warranted.
This study aims to explore the prevalence and causes of low vision and blindness focused on retinal disease in a population above 60 years in Nepal.
Two thousand one hundred subjects were enrolled in ...a population-based cross-sectional study. History, presenting and best corrected visual acuity after subjective refraction, anterior and posterior segment examinations was obtained in detail.
Among the total subjects, 1860 (88.57%) had complete information. Age varies from 60 to 95 (mean age: 69.64 ± 7.31) years. Low vision and blindness in both eyes at presentation was found in 984 (52.90%, 95% confidence interval (CI): 50.60-55.19) and 36 (1.94%, 95% CI: 1.35-2.66) subjects respectively. After best correction, bilateral low vision and blindness was found in 426 (22.92%, 95% CI: 21.01-24.88), and 30 (1.61%, 95% CI: 0.10-2.30) subjects respectively. As compared to 60-69 years old, risk of visual impairment was four times higher (95% CI:3.26-5.58) in the 70-79 year olds and 14 times higher (95% CI: 9.72-19.73) in the age group 80 years and above. Major causes of bilateral low vision were cataract (68.07%), followed by retinal disorders (28.64%), and for blindness; retinal disorders (46.66%), followed by cataract (43.33%). Illiteracy was significantly associated with visual impairment.
Among the elderly population, prevalence of visual impairment was high. Refractive error, cataract and retinal disorders were the major cause of low vision. Screening the population at the age 60 years and above, focused on cataract and posterior segment diseases, providing glasses and timely referral can help reduce visual impairment.
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