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1.
BMC Psychiatry ; 24(1): 209, 2024 Mar 18.
Artigo em Inglês | MEDLINE | ID: mdl-38500080

RESUMO

BACKGROUND: Visual impairment (VI) with comorbid mental disorders (MDs) are expected to have a major impact on people's daily functioning, for which tailored support is needed. However, this has been barely investigated. Therefore, this study aimed to (1) determine the impact of VI and comorbid MDs on functioning in essential life domains, (2) gain insight into best-practices that are currently used to support this target group, and (3) determine strategies to optimize care in the future. METHODS: A four-step qualitative Delphi method was used to obtain input from 31 Dutch professionals who work with this target group (84% female, mean age 46 years, on average 11 years of experience in working with the target group). The Self-Sufficiency Matrices were used to determine the impact on various aspects of daily living, for people with VI and (1) autism spectrum disorder, (2) psychotic disorders, (3) obsessive-compulsive disorder, (4) antisocial personality disorder, (5) borderline personality disorder, (6) dependent personality disorder. RESULTS: Experts describe a frail and vulnerable population, in which the VI and MD often have a cumulative negative impact on people's physical and mental health. People frequently experience anxiety, depression, fatigue and sleep disturbances. Also, many tend to neglect self-care and substance abuse is common. They often experience difficulty in trusting others while at the same time being dependent on them. Social interaction and relationships are complicated because of communication restrictions (e.g. no facial recognition) and social incompetence or withdrawal. Experts advise taking transdiagnostic factors into account, using evidence-based psychological treatment options based on an intermittent approach, and offering multidisciplinary care. They stress the importance of building trust, showing patience and empathy, stimulating empowerment, involving the informal network and building on positive experiences. CONCLUSION: VI and comorbid MD have a major impact on people's daily functioning on a mental, physical, social and environmental level. This study provides insight into best-practices to support this target group. According to experts, more research is needed which could be aimed at investigating tailored diagnostic approaches and treatment options and include clients' perspectives.


Assuntos
Transtorno do Espectro Autista , Transtornos Mentais , Transtorno Obsessivo-Compulsivo , Transtornos Psicóticos , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Transtorno do Espectro Autista/epidemiologia , Transtornos Psicóticos/epidemiologia , Saúde Mental , Transtorno Obsessivo-Compulsivo/diagnóstico , Transtornos da Visão/complicações , Transtornos da Visão/epidemiologia , Comorbidade , Transtornos Mentais/complicações , Transtornos Mentais/epidemiologia , Transtornos Mentais/terapia
2.
Surv Ophthalmol ; 2024 Mar 16.
Artigo em Inglês | MEDLINE | ID: mdl-38499047

RESUMO

Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients' experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.

3.
Trials ; 25(1): 102, 2024 Feb 02.
Artigo em Inglês | MEDLINE | ID: mdl-38308377

RESUMO

BACKGROUND: Among older people undiagnosed and untreated vision impairment and blindness are common. The leading causes are uncorrected refractive errors and cataracts. Vision problems are associated with a lower quality of life, several health problems, and a higher chance of falling accidents and fractures. To eliminate avoidable vision impairment and blindness, targeted eye screening programs are recommended. Older patients, receiving home healthcare, have not yet been considered as a population at risk who could benefit from eye screening. METHODS: A cluster-randomized controlled trial will be conducted to investigate the cost-effectiveness and cost-utility of online nurse-assisted eye screening in home healthcare, compared to care as usual, in reducing avoidable vision impairment. A healthcare and societal perspective will be used. The study will be performed in collaboration with several home healthcare organizations in the Netherlands. The online eye screening consists of near and distance visual acuity, followed by an Amsler grading test. Measurements in both groups will take place at baseline and after 6 and 12 months of follow-up. A total of 240 participants will be recruited. Older men and women (65 +), who receive home-based nursing and are cognitively able to participate, will be included. The primary outcome will be the change of two lines or more on the Colenbrander-1 M visual acuity chart between baseline and 12-month follow-up. DISCUSSION: An eye screening for populations at risk contributes to the detection of undiagnosed and untreated vision impairment. This may reduce the health-related consequences of vision loss and the high economic burden associated with vision impairment. TRIAL REGISTRATION: ClinicalTrials.gov NCT06058637. Registered on 27 September 2023.


Assuntos
Qualidade de Vida , Transtornos da Visão , Masculino , Humanos , Feminino , Idoso , Análise Custo-Benefício , Transtornos da Visão/diagnóstico , Cegueira , Atenção à Saúde , Ensaios Clínicos Controlados Aleatórios como Assunto
4.
Ophthalmic Physiol Opt ; 44(2): 413-425, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38251457

RESUMO

AIM: As a first step in developing an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with vision loss, this systematic review sought to identify the researchers' perspective by identifying the most often used outcome measures and research topics obtained from studies on adults with vision loss. METHODS: PubMed, Embase, CINAHL, APA PsycINFO and Web of Science were searched for studies on vision loss. Meaningful outcome measures and research topics were linked to the ICF components: environmental factors, body functions, body structures and the Activities and Participation life domains. RESULTS: After deduplication, 7219 records remained, of which 2328 articles were eligible for further review. For feasibility reasons, approximately 20% were randomly chosen from every publication year, resulting in 446 included articles. After full-text reading, 349 articles remained, describing 753 outcome measures based on questionnaires and 2771 additional research topics that could be linked to the ICF. Most were linked to the component Activities and Participation, with a focus on recreation and leisure activities (ICF code d920, 70%), reading (d166, 34%) and driving (d475, 27%). For the component body function, seeing functions (b210, 83%) were most often reported. Outcome measures and research topics were least often linked to the body structure component and environmental factors. CONCLUSION: The broad range of ICF categories identified in this systematic review represents the variety of functioning typical for adults with vision loss. These results reflect the focus of researchers over the past 21 years by using various vision-related outcomes. In our next steps to develop the ICF Core Set for Vision Loss, we will include perspectives of experts and lived experience.


Assuntos
Pessoas com Deficiência , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Adulto , Humanos , Avaliação da Deficiência , Atividades Cotidianas , Inquéritos e Questionários
5.
Ophthalmic Physiol Opt ; 44(2): 399-412, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38063259

RESUMO

PURPOSE: Two training programmes about depression and anxiety in adults with vision impairment were developed to support eye care practitioners (ECPs) and low vision service (LVS) workers in identifying and discussing mental health problems. The purpose of this study was to evaluate the training programmes' potential effectiveness and feasibility. METHODS: The training programmes were offered to ECPs (n = 9) and LVS workers (n = 17). All participants completed surveys pre-, mid- and post-training, and at a 4 week follow-up about the training programmes' content, effectiveness, feasibility and implementation. The Kirkpatrick model was used as a theoretical framework; linear mixed models were used to determine the potential effectiveness, and outcomes were explored during three focus group meetings. RESULTS: Expectations were met in the majority of the participants (84.6%). Post-training, both ECPs and LVS workers reported increased confidence (ß = 3.67, confidence interval (CI): 0.53-6.80; ß = 4.35, CI: 1.57 to 7.14, respectively) and less barriers (ß = -3.67, CI: -6.45 to -0.89; ß = -1.82, CI: -4.56 to 0.91). Mental health problems were more likely addressed in both the groups (ECP ß = 2.22, CI: -0.17 to 4.62; LVS ß = 4.18, CI: 2.67 to 5.68), but these effects did not last in ECPs (ß = -3.22, CI: -7.37 to 0.92). Variations of these learning effects between individual participants were found within both the groups, and LVS workers indicated a need to focus on their own profession. Participants provided information on how to improve the training programmes' feasibility, effectiveness and implementation. CONCLUSION: The training programmes seemed feasible and potentially effective. Transfer of the lessons learned into daily practice could be enhanced by, for example, specifying the training programmes for healthcare providers with the same profession, introducing microlearning and incorporating mental health management into organisation policies.


Assuntos
Saúde Mental , Baixa Visão , Adulto , Humanos , Estudos de Viabilidade , Inquéritos e Questionários
6.
Invest Ophthalmol Vis Sci ; 64(14): 46, 2023 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-38032337

RESUMO

Purpose: Studies showing problematic sleep patterns in blind and visually impaired children are often based on (parent) self-report. The purpose was to compare sleep patterns of blind children to normally sighted peers using objective measures. Methods: In this cross-sectional study, 100 blind (best-corrected visual acuity <3/60) and 100 age- and gender-matched normally sighted children aged 7 to 17 years wore a digital activity monitoring device for 1 week. Sleep quantity (i.e., total sleep time and total time in bed) and sleep quality (number of awakenings, latency, efficiency, wake after sleep onset [WASO], and sleep fragmentation index) were measured. Adjusted linear regression analyses were used to model group differences in sleep parameters. Results: Data of 163 children were included. Blind children spent significantly less total time in bed in minutes (ß, -31; 95% confidence interval, -56 to -6) and had a lower total sleep time (-41; -66 to -17), smaller number of awakenings (-2.8; -4.5 to -1.0), a lower WASO (-10; -16 to -5), and a more efficient sleep pattern (1.5; 0.1 to 2.8) compared to normally sighted children. Conclusions: Although sleep quantity and recommended hours of sleep per night were lower among blind children than normally sighted children, their sleep quality was better. This contradicts findings of self-report studies and warrants further studies to measure sleep objectively. Further, the discrepancy between previous findings and our findings regarding sleep quality may be explained by the house rules of the boarding schools attended by blind children, which may facilitate improved sleep hygiene.


Assuntos
Cegueira , Pessoas com Deficiência Visual , Criança , Humanos , Estudos Transversais , Cegueira/epidemiologia , Sono , Duração do Sono
7.
Sci Rep ; 13(1): 20479, 2023 11 22.
Artigo em Inglês | MEDLINE | ID: mdl-37993508

RESUMO

The Traffic Eye Scanning and Compensation Analyzer (TREYESCAN) is introduced as an innovative eye tracking test designed to measure compensatory eye movements in individuals with visual field defects. The primary objective of the test is to quantitatively assess and analyze the compensatory eye movements employed by patients with visual field defects while viewing videos of various traffic scenes from the viewpoint of a driver of a passenger car. The filming process involved capturing a wide range of driving conditions and hazards, aiming to replicate real-world scenarios. Specific dynamic areas of interest within these scenes were selected and assessed by a panel of experts on medical and practical fitness to drive. Pilot measurements were conducted on a sample of 20 normally-sighted individuals during two different measurement sessions. The results provide valuable insights into how individuals without visual impairment view the dynamic scenes presented in the test. Moving forward, the TREYESCAN will be used in a case-control study involving glaucoma patients and control subjects, with the goal of further investigating and understanding the mechanisms employed by individuals with glaucoma to compensate for their visual field defects.


Assuntos
Condução de Veículo , Glaucoma , Humanos , Movimentos Oculares , Campos Visuais , Tecnologia de Rastreamento Ocular , Estudos de Casos e Controles , Transtornos da Visão/diagnóstico , Glaucoma/diagnóstico
9.
Acta Ophthalmol ; 2023 Sep 25.
Artigo em Inglês | MEDLINE | ID: mdl-37749859

RESUMO

PURPOSE: To assess the longitudinal vision-related quality of life among patients with CRB1-associated inherited retinal dystrophies. METHODS: In this longitudinal questionnaire study, the National Eye Institute Visual Function Questionnaire (39 items, NEI VFQ-39) was applied at baseline, two-year follow-up, and 4-year follow-up in patients with pathogenic CRB1 variants. [Correction added on 20 November 2023, after first online publication: The preceding sentence has been updated in this version.] Classical test theory was performed to obtain subdomain scores and in particular 'near activities' and 'total composite' scores. The Rasch analysis based on previous calibrations of the NEI VFQ-25 was applied to create visual functioning and socio-emotional subscales. RESULTS: In total, 22 patients with a CRB1-associated retinal dystrophy were included, […] with a median age of 25.0 years (interquartile range: 13-31 years) at baseline and mean follow-up of 4.0 ± 0.3 years. [Correction added on 20 November 2023, after first online publication: The preceding sentence has been updated in this version.] A significant decline at 4 years was observed for 'near activities' (51.0 ± 23.8 vs 35.4 ± 14.7, p = 0.004) and 'total composite' (63.0 ± 13.1 vs 52.0 ± 12.1, p = 0.001) subdomain scores. For the Rasch-scaled scores, the 'visual functioning' scale significantly decreased after 2 years (-0.89 logits; p = 0.012), but not at 4-year follow-up (+0.01 logits; p = 0.975). [Correction added on 20 November 2023, after first online publication: In the preceding sentence, "…after 4 years…" has been corrected to "…after 2 years…" in this version.] The 'socio-emotional' scale also showed a significant decline after 2 years (-0.78 logits, p = 0.033) and 4 years (-0.83 logits, p = 0.021). CONCLUSION: In the absence of an intervention, a decline in vision-related quality of life is present in patients with pathogenic CRB1 variants at 4-year follow-up. Patient-reported outcome measures should be included in future clinical trials, as they can be a potential indicator of disease progression and treatment efficacy.

10.
Ophthalmic Physiol Opt ; 43(5): 1223-1254, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37449334

RESUMO

INTRODUCTION: The aim of this systematic review and meta-analysis was to assess factors associated with work participation in people with visual impairments and to explore how these factors may have changed over time. METHOD: A comprehensive search of PubMed, Embase.com, EBSCO/APA PsycInfo, EBSCO/CINAHL and EBSCO/ERIC from database inception to 1 April 2022 was performed. We included studies with cross-sectional design, case-control, case-series or cohort design, involving visually impaired working-age adults with at least moderate visual impairment, and evaluated the association between visual impairment and work participation. Studies involving participants with deaf-blindness or multiple disabilities were excluded. We assessed study quality (Newcastle-Ottawa Scale [NOS]), examined between-study heterogeneity and performed subgroup analyses. The study protocol was registered in PROSPERO, CRD42021241076. RESULTS: Of 13,585 records, 57 articles described 55 studies including 1,326,091 participants from mostly high-income countries. Sociodemographic factors associated with employment included higher education (odds ratio [OR] 3.34, 95% confidence interval [CI] 2.47 to 4.51, I2 0%), being male (OR 1.59, 95% CI 1.37 to 1.84, I2 95%), having a partner (OR 1.73, 95% CI 1.12 to 2.67, I2 34%), white ethnicity (OR 1.36, 95% CI 1.07 to 1.74, I2 0%) and having financial assistance (OR 0.38, 95% CI 0.26 to 0.55, I2 85%). Disease-related factors included worse visual impairment (OR 0.61, 95% CI 0.46 to 0.80, I2 98%) or having additional disabilities (OR 0.55, 95% CI 0.49 to 0.62, I2 16%). Intervention-related factors included mobility aid utilisation (OR 0.35, 95% CI 0.10 to 1.18, I2 94%). A potential moderating effect of time period and geographical region was observed for some factors. Study quality (NOS) was rated moderate to high. CONCLUSION: Several sociodemographic and disease related factors were associated with employment status. However, the results should be interpreted with caution because of overall high heterogeneity. Future research should focus on the role of workplace factors, technological adjustments and vocational rehabilitation services on work participation.


Assuntos
Transtornos da Visão , Adulto , Humanos , Masculino , Feminino , Estudos Transversais
11.
Clin Ophthalmol ; 17: 1025-1034, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37035516

RESUMO

Purpose: To study the causes of moderate and severe visual impairment (VI) and blindness and its changing trends in Nepalese children. Patients and Methods: A cross-sectional descriptive study was conducted. Participants, aged 7 to 17 years were recruited from integrated schools for the blind and the outpatient department of a tertiary eye hospital in Kathmandu. VI and blindness were categorized according to World Health Organization (WHO) categories and its protocol for eye examination of children with blindness and VI was followed. Findings were compared to former studies from Nepal. Results: A total of 200 children were included, of whom 45% had moderate VI, 5% had severe VI, and 50% were blind. Mean age of children with VI and blindness was 11.1 (SD = 3.3) and 12.9 (SD = 3) years, respectively. Forty percent of children with VI and 38% of blind children were female. In our study, retina (39%) and whole globe (32%) were the most common anatomical site of involvement in children with VI and blindness, respectively, while cornea was the most common anatomical site of involvement in former studies. Heredity (43%) was the most common etiological factor although in 24.5% of all children, etiology was unknown. In 43.5% of children, blindness and VI was due to avoidable causes. Conclusion: In relatively many children, the etiology of VI and blindness could be either prevented or treated. Compared to former studies from Nepal, there is a changing trend in the etiology of severe VI and blindness.

12.
Acta Ophthalmol ; 101(7): 766-774, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36959419

RESUMO

PURPOSE: Healthcare providers often experience difficulties in discussing depression with adults with visual impairment (VI), obstructing timely referral. The purpose of this study was to examine predictors of routine discussions of depression with adults with VI from the perspective of different healthcare providers from different countries. METHODS: Cross-sectional survey data from Welsh (N = 122), Australian (N = 94) and Dutch (N = 100) healthcare providers, that is eye care practitioners (ECPs) and low-vision care providers (LVCPs), were analysed. Multivariable logistic regression analysis was performed in the Welsh sample to determine predictors for discussing depression. Internal validation was conducted by using a bootstrap method, and the recalibrated model was externally validated in the Australian and Dutch sample. RESULTS: Work experience in eye care services (OR 0.95; 95% confidence interval (CI) 0.92 to 0.99) and perceived barriers (OR 0.95; 95% CI 0.92 to 0.98) was found to predict discussing depression with patients. The area under the curve (AUC) of 0.73 reflected good discrimination of the model. The model showed a slightly better fit in the Australian sample (AUC = 0.77), but a poor fit in the Dutch sample. CONCLUSION: The final prediction model was not generalizable to Dutch healthcare providers. They perceived less barriers in depression management than Welsh and Australian healthcare providers. This could be explained by differences in ECPs and LVCPs roles and responsibilities, increased attention on mental health and differences in organizing health care. Differences between healthcare providers' responsibilities and support needs should be taken into account while creating a facilitating environment to discuss depression.


Assuntos
Depressão , Baixa Visão , Adulto , Humanos , Depressão/diagnóstico , Depressão/epidemiologia , Estudos Transversais , Austrália/epidemiologia , Baixa Visão/epidemiologia , Pessoal de Saúde
13.
Ophthalmic Physiol Opt ; 43(4): 725-737, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36807604

RESUMO

PURPOSE: To investigate the agreement between an online nurse-assisted eye-screening tool and reference tests in older adults receiving home healthcare and to collect user experiences. METHODS: Older adults (65+) receiving home healthcare were included. Home healthcare nurses assisted in administering the eye-screening tool at participants' homes. Approximately 2 weeks later, a researcher administered reference tests at participants' homes. Experiences from participants and home healthcare nurses were collected. Agreement in outcomes (distance and near visual acuity, with the latter being measured using two different optotypes, and macular problems) between the eye-screening tool and reference clinical testing was compared. A difference of less than ±0.15 logMAR was considered acceptable. RESULTS: A total of 40 participants were included. Here, we describe the results for the right eye; results for the left eye were similar. The mean difference between the eye-screening tool and reference tests for distance visual acuity was 0.02 logMAR. The mean difference between the eye-screening tool and reference tests using two different optotypes for near visual acuity was 0.06 and 0.03 logMAR, respectively. The majority of the individual data points were within the ±0.15 logMAR threshold (75%, 51% and 58%, respectively). The agreement between tests for macular problems was 75%. Participants and home healthcare nurses were generally satisfied with the eye-screening tool, although remarks for further improvements were made. CONCLUSIONS: The eye-screening tool is promising for nurse-assisted eye screening in older adults receiving home healthcare, with the mostly satisfactory agreement. After implementing the eye-screening tool in practice, cost-effectiveness needs to be investigated.


Assuntos
Atenção à Saúde , Humanos , Idoso , Acuidade Visual
14.
Behav Res Methods ; 55(7): 3820-3830, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-36253600

RESUMO

Eye tracking measurements taken while watching a wide field screen are challenging to perform. Commercially available remote eye trackers typically do not measure more than 35 degrees in eccentricity. Analysis software was developed using the Pupil Core Eye Tracking data to analyze viewing behavior under circumstances as natural as possible, on a 1.55-m-wide screen allowing free head movements. Additionally, dynamic area of interest (AOI) analyses were performed on data of participants viewing traffic scenes. A toolkit was created including software for simple allocation of dynamic AOIs (semi-automatically and manually), measurement of parameters such as dwell times and time to first entry, and overlaying gaze and AOIs on video. Participants (n =11) were asked to look at 13 dynamic AOIs in traffic scenes from appearance to disappearance in order to validate the setup and software. Different AOI margins were explored for the included objects. The median ratio between total appearance time and dwell time was about 90% for most objects when appropriate margins were chosen. This validated open-source toolkit is readily available for researchers who want to perform dynamic AOI analyses with the Pupil Core eye tracker, especially when measurements are desired on a wide screen, in various fields such as psychology, transportation, and low vision research.


Assuntos
Movimentos Oculares , Pupila , Humanos , Software , Movimentos da Cabeça
15.
Transl Vis Sci Technol ; 11(11): 14, 2022 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-36394844

RESUMO

Purpose: In previous research the EyeQ item bank, which measures vision-related quality of life (Vr-QoL), was calibrated for future use as a computer adaptive test (CAT). The aim of the current study was to define optimal administration rules. Methods: CAT simulations were performed using real responses. Patients (N = 704; mean age, 76.2 years), having macular edema completed the EyeQ. Four CAT simulations were performed, which were set with different administration rules regarding length, accuracy level and the association with best health, which means the test was aborted after the first 4 responses of having no complaints. Results: The CATDefault showed a mean test length of 6.9 and 15.1% unreliable estimations. Extending the test length to 15 items (CATAlt1) resulted in a mean test length of 7.3 and slightly decreased the percentage unreliable estimations (11.5%). Under CATAlt2, the percentage unreliable estimations was 15.1% and the mean test length was 9.7. Percentages of floor/ceiling effects for CATDefault, CATAlt1, and CATAlt2 were 3.1, 3.0, and 3.1, respectively. CATBestHealth reduced the mean test length to 5.9 and showed 18.2% unreliably estimated patients, of which 14.2% had floor/ceiling scores. Conclusions: This study shows that the CATBestHealth provided reliably estimated ability scores, with a negligible increase in the number of unreliably estimated patients and ensures that patients having little or no vision-related quality of life problems are minimally burdened with completing items. Translational Relevance: The computer adaptive test EyeQ, set with optimal administration rules, can now be used for the computer adaptive assessment of vision-related quality of life in patients suffering from exudative retinal diseases in ophthalmic clinical practice.


Assuntos
Edema Macular , Qualidade de Vida , Humanos , Computadores , Simulação por Computador
16.
Ophthalmic Physiol Opt ; 42(5): 1015-1022, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35938211

RESUMO

BACKGROUND: Age-related macular degeneration (AMD) is one of the principal causes of irreversible visual impairment in the older adult population. Recent evidence indicates that there are signs of undertreatment and overtreatment, underdiagnosis and insufficient information provision in AMD care. Shared decision-making (SDM) can aid information sharing between patients and health professionals and enhances high-quality care. This research aimed to gain insight into patients' and professionals' views on SDM in AMD care. METHODS: Semi-structured interviews were conducted with 20 patients with AMD and 19 health professionals in June and July 2020. Participants were recruited through hospitals, professional and patient associations and (social) networks. Sample representativeness was ensured in terms of sociodemographic and disease characteristics for patients, and profession-related characteristics for health professionals. Interviews were analysed according to a predetermined coding framework. RESULTS: Although SDM is receiving attention in AMD care, health professionals and patients experienced barriers in making shared decisions. The most common barriers reported included limitations in treatment options, time constraints, strict treatment guidelines and patients' comorbidity. Furthermore, most patients indicated that they were not (fully) informed about all aspects of AMD trajectory, such as the possibility to discontinue therapy or the long-term and invasive character of treatment. Some patients expressed the need for a more empathic and person-centred communication style from their health professional. CONCLUSION: The concerns raised by patients and health professionals suggest that there is room for improvement in delivery of SDM in AMD care. Findings from this study indicate that information provision and communication can be improved.


Assuntos
Degeneração Macular , Participação do Paciente , Idoso , Tomada de Decisões , Tomada de Decisão Compartilhada , Humanos , Degeneração Macular/diagnóstico , Degeneração Macular/terapia , Pesquisa Qualitativa
17.
Ophthalmic Physiol Opt ; 42(4): 828-838, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35661209

RESUMO

PURPOSE: To identify parameters associated with the downward trend in the uptake of Low Vision Services (LVS) in the Netherlands. METHODS: A retrospective cohort study was conducted based on a Dutch national health insurance claims database (Vektis CV) of all adults (≥18 years) who received LVS from 2015 until 2018. Descriptive statistics were used to assess socio-demographic, clinical and contextual characteristics and other healthcare utilisation of the study population. General estimating equations trends in characteristics and healthcare utilisation were determined over time. RESULTS: A total of 49,726 unique patients received LVS, but between 2015 and 2018, the number of patients decreased by 15%. The majority was aged 65 years or older (53%), female (54%), had a middle (38%) or low (24%) socio-economic status and lived in urban areas (68%). Between 2015-2018, significant downward trends were found for treatment with intravitreal injections and lens-related diseases for LVS patients. For physical comorbidity, utilisation of ophthalmic care, low vision aids and occupational therapy, a significant upward trend was found over time. CONCLUSION: The decrease of Dutch LVS patients by 15% between 2015 and 2018 might be explained by a reduced distribution of patients treated with intravitreal injections and patients with lens-related diseases within the LVS. Compared to 2015, patients were more likely to have physical comorbidity, to see an ophthalmologist and to use low vision aids and occupational therapy in 2016, 2017 and 2018. This might indicate enhanced access to LVS when treated by ophthalmologists or within other medical specialties, or the opposite, i.e., less access when not treated within one of these medical specialties. Future research is needed to examine differences in patterns between LVS users and non-users further.


Assuntos
Síndrome da Imunodeficiência Adquirida , Baixa Visão , Adulto , Atenção à Saúde , Feminino , Humanos , Aceitação pelo Paciente de Cuidados de Saúde , Estudos Retrospectivos , Baixa Visão/epidemiologia , Baixa Visão/terapia
18.
BMC Health Serv Res ; 22(1): 528, 2022 Apr 21.
Artigo em Inglês | MEDLINE | ID: mdl-35449055

RESUMO

BACKGROUND: Depression and anxiety are common in visually impaired and blind adults, but often remain untreated in those who receive support from low vision service (LVS) organizations. This study aims to determine factors associated with discussing mental health by LVS workers. METHODS: A self-administered cross-sectional survey in one hundred LVS workers was performed. Data on current practice, symptom attribution, and determinants of the Integrated Change Model (i.e. predisposing and environmental factors, awareness, attitude, self-efficacy, social influence, confidence and barriers) were investigated. Multivariable logistic regression analysis was performed to determine predictors of discussing mental health problems in this population. Subsequently, internal validation was conducted using a bootstrapping method. RESULTS: Around 80% of the participants often discussed mental health with clients. Five factors were found to predict discussion of mental health: female gender (OR = 4.51; 95% confidence interval (CI) 0.98 to 21.61), higher education (OR = 3.39; CI 1.19 to 9.66), intention to discuss mental health problems (OR = 3.49; CI 1.20 to 10.15), higher self-efficacy (OR = 1.11; CI 1.02 to 1.20), and higher perceived social influence (OR = 1.15; CI 1.05 to 1.27). Good discrimination after internal validation was reflected by the area under the curve (0.850). CONCLUSIONS: Previous studies indicate clients want healthcare providers to initiate discussions about mental health. However, still 20% of LVS workers do not discuss suspected depression or anxiety. In order to improve this, LVS organizations could address mental health as part of their care and provide training to ensure intention to discuss mental health problems, improve self-efficacy and create a supportive environment between colleagues.


Assuntos
Depressão , Baixa Visão , Adulto , Ansiedade/epidemiologia , Cegueira , Estudos Transversais , Depressão/diagnóstico , Feminino , Humanos , Intenção , Autoeficácia
19.
Transl Vis Sci Technol ; 11(4): 5, 2022 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-35380613

RESUMO

Purpose: This study aims to develop an item-bank to measure vision-related quality of life (Vr-QoL) and subsequently calibrate this set of items. Methods: Three Vr-QoL instruments were searched for suitable items to be added in the EyeQ. Patients who received antivascular endothelial growth factor treatment for various retinal diseases involving macular edema were included in the study and completed the 47-item EyeQ. Item response theory (IRT) was used to calibrate the EyeQ items, which was performed multiple times in subsets as a novel approach, containing 80% of the data. Differential item functioning (DIF) was evaluated for various variables. Results: Responses of 704 patients were used in analysis. One item violated the local independence IRT-assumption and showed a high percentage of missing values, after which this item was deleted from the item-bank. The data of the five subsets fitted the graded response model adequately, and no DIF was detected for items between subsets, after which mean item parameters were calculated. Item fit statistics were found to be good. DIF was detected for gender, age, and administration mode by the patient (independently vs. with help), this involved three items, which all showed negligible impact on total scores. Conclusions: Because of separate calibrations of the EyeQ in multiple subsets, a high robustness of item parameters is expected. Translational Relevance: The calibrated EyeQ can now be used for the assessment of Vr-QoL in patients suffering from exudative retinal diseases and is promising for use as a computer adaptive test.


Assuntos
Qualidade de Vida , Doenças Retinianas , Calibragem , Etnicidade , Humanos , Inquéritos e Questionários
20.
Ophthalmic Physiol Opt ; 42(4): 849-857, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35366334

RESUMO

PURPOSE: To determine which demographic and clinical characteristics are predictive of vision-related quality of life (VrQoL) and quality of life (QoL) in patients with macular oedema receiving intravitreal anti-vascular endothelial growth factor (VEGF) treatment. METHODS: Vision-related quality of life (VrQoL) and quality of life (QoL) were measured in 712 patients with retinal exudative disease receiving anti-VEGF treatment at baseline, 6 and 12 months. VrQoL was measured using an item-response theory based 47-question item bank (EyeQ), whereas QoL was measured using the EuroQol Five Dimensions (EQ-5D) questionnaire. The EQ-5D score was dichotomized into a perfect score of 1 and a suboptimal score of <1. Demographic and clinical patient characteristics were considered as possible predictors of (Vr)QoL. Prediction models for (Vr)QoL were created with linear mixed models and generalised estimating equations, using a forward selection procedure. RESULTS: A worse VrQoL was predicted by poorer LogMAR visual acuity of the better eye, female sex, single civil status, older age, longer length of anti-VEGF treatment at baseline and the presence of non-ocular and ocular comorbidities. Suboptimal EQ-5D scores were predicted by poorer LogMAR visual acuity of the better eye, female sex, single civil status, older age, the presence of non-ocular comorbidities and a lower educational background. CONCLUSIONS: Along with visual acuity of the better eye, which is the main factor used in clinical decision making, other patient characteristics should also be considered for the risk assessment of (Vr)QoL, such as sex, age, civil status, comorbidities and length of anti-VEGF treatment.


Assuntos
Edema Macular , Inibidores da Angiogênese/uso terapêutico , Feminino , Humanos , Injeções Intravítreas , Edema Macular/induzido quimicamente , Edema Macular/tratamento farmacológico , Qualidade de Vida , Ranibizumab/uso terapêutico , Fator A de Crescimento do Endotélio Vascular/uso terapêutico , Transtornos da Visão , Acuidade Visual
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