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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.

Background Visual impairment is an important cause of disability in children. There is a lack of information on rehabilitation needs and low vision support services for children with visual impairment in Nepal. This is a pilot study designed to translate, culturally adapt and pre-test the Dutch version of the Participation and Activity Inventory for Children and Youth (PAI-CY) with visual impairment aged 7–17 years to develop a Nepali version. Questionnaires (PAI-CY versions for 7–12 and 13–17 years) were translated using standardized methods and were culturally adapted by a panel of experts. They were pretested to evaluate comprehensibility and relevance among six children with visual impairment and blindness. Finally, participants completed a questionnaire evaluation form. Results The translation and cultural adaptation process resulted in the adaptation of nine items to make them suitable for Nepali culture. Most children had comprehensibility problems with some specific items because of vocabulary, sentence structure and the composition of items. Most of the children were satisfied with the questionnaires. Conclusion The study resulted in the development of a Nepali version of the PAI-CY. We worked with a small group of content experts and a small but representative sample of children which allowed us to use rigorous translation procedures to address language and cultural differences. A population based study has been planned to investigate the psychometric properties of these questionnaires.

Background Systematic reviews of outcome measurement instruments are important tools in the evidence-based selection of these instruments. COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) has developed a comprehensive and widespread guideline to conduct systematic reviews of outcome measurement instruments, but key information is often missing in published reviews. This hinders the appraisal of the quality of outcome measurement instruments, impacts the decisions of knowledge users regarding their appropriateness, and compromises reproducibility and interpretability of the reviews’ findings. To facilitate sufficient, transparent, and consistent reporting of systematic reviews of outcome measurement instruments, an extension of the PRISMA (Preferred Reporting of Items for Systematic reviews and Meta-Analyses) 2020 guideline will be developed: the PRISMA-COSMIN guideline. Methods The PRISMA-COSMIN guideline will be developed in accordance with recommendations for reporting guideline development from the EQUATOR (Enhancing the QUAlity and Transparency Of health Research) Network. First, a candidate reporting item list will be created through an environmental literature scan and expert consultations. Second, an international Delphi study will be conducted with systematic review authors, biostatisticians, epidemiologists, psychometricians/clinimetricians, reporting guideline developers, journal editors as well as patients, caregivers, and members of the public. Delphi panelists will rate candidate items for inclusion on a 5-point scale, suggest additional candidate items, and give feedback on item wording and comprehensibility. Third, the draft PRISMA-COSMIN guideline and user manual will be iteratively piloted by applying it to systematic reviews in several disease areas to assess its relevance, comprehensiveness, and comprehensibility, along with usability and user satisfaction. Fourth, a consensus meeting will be held to finalize the PRISMA-COSMIN guideline through roundtable discussions and voting. Last, a user manual will be developed and the final PRISMA-COSMIN guideline will be disseminated through publications, conferences, newsletters, and relevant websites. Additionally, relevant journals and organizations will be invited to endorse and implement PRISMA-COSMIN. Throughout the project, evaluations will take place to identify barriers and facilitators of involving patient/public partners and employing a virtual process. Discussion The PRISMA-COSMIN guideline will ensure that the reports of systematic reviews of outcome measurement instruments are complete and informative, enhancing their reproducibility, ease of use, and uptake.

Purpose of review We aimed to systematically evaluate the content validity of patient-reported outcome measures (PROMs) specifically developed to measure (aspects of) health-related quality of life (HRQOL) in people with type 2 diabetes. A systematic review was performed in PubMed and Embase of PROMs measuring perceived symptoms, physical function, mental function, social function/participation, and general health perceptions, and that were validated to at least some extent. Content validity (relevance, comprehensiveness, and comprehensibility) was evaluated using COSMIN methodology. Recent findings We identified 54 (different versions of) PROMs, containing 150 subscales. We found evidence for sufficient content validity for only 41/150 (27%) (subscales of) PROMs. The quality of evidence was generally very low. We found 66 out of 150 (44%) (subscales of) PROMs with evidence for either insufficient relevance, insufficient comprehensiveness, or insufficient comprehensibility. For measuring diabetes-specific symptoms, physical function, mental function, social function/participation, and general health perceptions, we identified one to 11 (subscales of) PROMs with sufficient content validity, although quality of the evidence was generally low. For measuring depressive symptoms, no PROM with sufficient content validity was identified. Summary For each aspect of HRQL, we found at least one PROM with sufficient content validity, except for depressive symptoms. The quality of the evidence was mostly very low.

Purpose: To describe the process of implementing a screening questionnaire for depression and anxiety, the Patient Health Questionnaire-4 (PHQ-4), in low-vision service (LVS) organizations.Methods: This study consisted of three parts: (1) a usability study combined with semistructured interviews, in which clients (n = 10) of LVS organizations expressed their preference for using the PHQ-4; (2) a feasibility study, in which the PHQ-4 was implemented on a small scale and its use was evaluated, involving health care providers (n = 6) and clients (n = 9); and (3) semistructured interviews to identify barriers and facilitators for implementing the PHQ-4 according to health care providers (n = 6) and managers (n = 4) of LVS organizations. Results were integrated into themes and linked to constructs of the Consolidated Framework for Implementation Research (CFIR).Results: Six themes were derived from the substudies: (1) quality of the intervention, (2) applicability for clients of LVS organizations, (3) attitude and needs of clients, (4) attitude of health care providers, (5) support within LVS organizations, and (6) embedment in current practice. Results could be linked to 12 CFIR constructs. The constructs "relative advantage," "patient needs and resources," and "available resources" emerged most prominently in our themes as either barrier or facilitator.Conclusions: The PHQ-4 seems an appropriate screening instrument for use in LVS organizations because of its quality and adaptable use. It might provide opportunities to timely detect depression and anxiety, but challenges in implementing the PHQ-4 should be considered.Translational Relevance: Barriers and facilitators for implementing the PHQ-4 may also apply to implementing other questionnaires in LVS organizations.

Purpose: The aim was to compare fatigue levels between patients with visual impairment and controls with normal sight and to examine the association between fatigue and vision loss severity. Methods: A systematic literature search was performed using databases of PubMed, Embase, PsycINFO and Cochrane to identify observational studies with outcomes related to fatigue (e.g. vitality subscale of the Short-Form 36, Fatigue Assessment Scale). A meta-analysis was performed using standardised mean differences (SMDs) and odds ratios (OR) to quantitatively summarise the association between visual impairment and fatigue. Sources of heterogeneity were explored by subgroup and sensitivity analyses. Study quality was assessed with the Newcastle-Ottawa scale. Results: After reviewing 4477 studies, 22 studies with a total of 40 004 participants were included, of which 18 contributed to meta-analysis. Among these, eight were assessed as moderate quality studies and 10 as high quality studies. Pooled analysis involving 2500 patients and 8395 controls showed higher fatigue severity levels (S.M.D. = −0.36, 95% CI −0.50 to −0.22, 14 studies) among visually impaired patients compared to normally sighted controls. This effect size was small and persisted in sensitivity analyses that involved study quality, fatigue assessment tools and visual acuity data. Furthermore, pooled analysis of four studies including 2615 patients and 5438 controls showed a significant association between visual impairment and fatigue (OR = 2.61, 95% CI 1.69 to 4.04). Secondary meta-analysis of four studies showed no significant difference in fatigue severity (S.M.D. = 0.01, 95% CI −0.37 to 0.39) between patients with moderate visual impairment and patients with severe visual impairment or blindness. Conclusions: Current moderate to high quality evidence suggest that patients with visual impairment experience more severe fatigue symptoms than persons with normal sight. However, a limited number of available studies indicates that fatigue is not associated with severity of vision loss. Future studies are required to determine which factors and underlying mechanisms may explain the association between visual impairment and fatigue. Discussing fatigue at an early stage and developing intervention options for vision-related fatigue should be considered within the field of low vision rehabilitation.

Purpose The Participation and Activity Inventory for Children and Youth 3–6 years (PAI‐CY 3‐6) was recently developed to assess the participation needs of children with visual impairment (VI) by means of parent‐proxy report. This study reports on its psychometric properties. Methods Parents of children aged 3–6 years registered at two low vision rehabilitation centers in the Netherlands were invited to participate and completed the 52‐item PAI‐CY. Satisfaction with the PAI‐CY 3‐6 was determined using an evaluation form. Basic item analyses was conducted, after which an item response theory (IRT) model (i.e. the graded response model, GRM) was fitted. Deletion of items was informed by results of item analyses, fulfillment of IRT assumptions, differential item functioning, fit to the GRM and item information content. Face and content validity were considered; professionals from low vision rehabilitation centers were asked for their opinion in the item deletion process. After obtaining a satisfactory set of items, known‐group validity, concurrent validity and test‐retest reliability were also investigated. Results Data of 237 parents were included in the analyses. Various aspects of the PAI‐CY 3‐6 were perceived as neutral to positive by over 85% of the respondents. After removing 17 items, the remaining 35 items reflected satisfactory fit to the GRM. Known‐group validity was supported, since participants with more severe VI and comorbidity scored significantly worse than those with less severe VI and without comorbidity after correcting for potential confounders. Test‐retest reliability was adequate, and the PAI‐CY showed to have good concurrent validity. Feedback from professionals motivated the maintenance of 3 of the 17 deleted items, although not included in the scoring. Furthermore, two new items were added, resulting in a 40‐item instrument. Conclusions The PAI‐CY 3‐6 has sound psychometric properties and can now be used to assess the participation needs of children aged 3–6 years with VI by means of proxy. Implementation in routine low vision rehabilitation care enables further optimization and investigation of its acceptability and feasibility.

Contains fulltext : 204312.pdf (Publisher’s version ) (Open Access) Visual impairment in childhood often has lifelong implications. In order to aim for the highest levels of functioning, participation and quality of life and to ensure children's wellbeing, 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 [RCTs], 18 non-RCTs, and 20 before-after comparisons [BAs]). 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. 46 p.

Purpose: The purpose of this study was to investigate quality of life and participation in children aged 3 to 17 years with visual impairment (VI) compared to reference groups and between subgroups with increasing severity levels of VI.Methods: Parents of children aged 3 to 17 years (n = 500) and children aged 13 to 17 years (n = 75) completed the Child and Adolescent Scale of Participation (CASP). Children aged 7 to 17 years (n = 263) and their parents (n = 255) completed the KIDSCREEN-27 questionnaire to assess quality of life. Scores were compared to age and/or gender-appropriate population-based samples. For the CASP, a comparison was also made with children with chronic conditions or disabilities. The association between severity of VI and quality of life or participation was analyzed with linear regression models.Results: Children reported significantly worse on Physical Wellbeing and Social Support & Peers, but better on the School Environment KIDSCREEN-27 subscales compared to reference groups. Parents additionally reported worse on Autonomy & Parent Relation. Children's participation was significantly worse compared to a population-based sample, but significantly better compared to children with chronic conditions and disabilities. Having moderate or severe VI/blindness was significantly associated with worse participation, as reported by parents relative to those with no VI.Conclusions: Quality of life of children with VI is affected especially regarding Physical Wellbeing and Social Support & Peers compared to a reference population, and their participation is considerably worse. Participation was more affected in children with more severe VI. These results contribute to the understanding of the impact of VI. Interventions targeting physical health, social skills, and participation are warranted.

PURPOSE: To investigate the effect and potential predictors of corneal transplantation on patient-reported outcomes such as quality of life, visual functioning, and mental health by systematically reviewing the literature. METHODS: Studies with 1 preoperative and at least 1 postoperative measurement were searched for in relevant literature databases. Methodological quality was assessed using the Quality Assessment Tool for Quantitative Studies, and effect sizes were calculated. RESULTS: Of 1445 unique publications, 14 studies, including 15 study designs, were described in 16 publications. Four randomized controlled trials, 1 controlled clinical trial, 1 cohort study, and 1 before-after study (BA) were of good quality; 6 BAs were of moderate quality; and 2 BAs were of weak quality. Patients generally improved 12 months after transplantation on health-related quality of life (effect size between 0.08 and -3.06), vision-related quality of life (-0.67 and -6.65), visual functioning (-0.55 and -0.63), and subjective visual symptoms (-0.31 and -0.86). Patient satisfaction was high (-0.95). Patients improved on depression (-0.31) but remained stable on anxiety (-0.05) 4 months after transplantation. Predictors of positive outcomes were lower preoperative visual acuity and visual functioning, better postoperative visual factors, younger age, and male sex. CONCLUSIONS: Corneal transplantation showed overall beneficial effects on patient-reported outcomes. Knowledge of these effects and predictors might result in better treatment, more patient-centered care, and more realistic expectations on the part of patients and ophthalmologists. Future studies should focus on not only health- and vision-related quality of life but also mental health and labor participation using longitudinal study designs.

Purpose: Children with visual impairment often experience more difficulties regarding participation compared to sighted peers. The Participation and Activity Inventory for Children and Youth (PAI-CY) has recently been developed to assess their participation needs. A novel application in the field of questionnaires is the use of network analysis to explore interrelations between items in order to capture their complex interactions as a reflection of the overall construct of measurement. This study aimed to apply network modeling for the PAI-CY 7–12 from the perspectives of children and their parents. Methods: Children and their parents (n = 195) completed the 55-item PAI-CY via face-to-face interviews and a web-based survey, respectively. Internal consistency, test-retest reliability, and concordance between children and parents were investigated. Two networks were created, along with visualizations of shared and differential connections between children and parents. Results: Eight items were deleted. Network structures were dissimilar; for children, connections evolved around social contacts and school items, whereas for parents, mobility, leisure time, acceptance, self-reliance, and communication items prevailed. In the children’s network, playing imaginary games, inviting a friend to play at home, and estimating the distance from others were most connected to other items. Conclusions: This study uniquely identifies connections between items of the PAI-CY 7–12, highlighting the different perspectives parents and children have on what defines participation, possibly implying that they perceive the relevance of various rehabilitation programs differently. Translational Relevance: Rehabilitation programs aimed at improving the most connected items might positively affect other items in the network, possibly improving children’s participation.

Purpose: To compare health-related quality of life and participation of visually impaired young adults with normative groups, and to explore severity of vision loss and its association with participation and quality of life. Methods: Young adults aged 18–25 years (n = 172) registered at two Dutch low vision rehabilitation organizations completed the Short Form Health Survey (SF-36), EuroQol-5 Dimensions (EQ-5D), Impact on Participation and Autonomy (IPA) and Low Vision Quality of Life questionnaire (LVQOL). EQ-5D and SF-36 scores were compared to age-specific norms. IPA scores were compared to norms of a population having three chronic diseases simultaneously. Linear regression was used to assess the association between severity of vision loss (mild VI, moderate VI and severe VI/blindness), and quality of life and participation. Results: Participants scored significantly worse on almost all (sub)scales compared with relevant norms. Effect sizes for the EQ-5D and SF-36 (sub)scales were mostly small; moderate and large effect sizes were found for the IPA. Compared to young adults with mild VI, corrected models showed a significant association between having moderate VI and the physical component score of the SF-36, and between severe VI/blindness and the LVQOL. Conclusion: VI has a moderate impact on some aspects of quality of life and a large impact on participation of young adults when compared with relevant normative populations. Severity of vision loss is associated with worse physical functioning and vision-related quality of life. The results contribute to a better understanding of the impact of VI and might lead to improved low vision services.

Background To assess cross-cultural validity between Dutch and English versions of the FVQ_CYP, a patient-reported outcome measure developed in the United Kingdom (UK) for children and adolescents with (severe) visual impairment or blindness (VI for brevity) to measure functional vision. Methods The 36-item FVQ_CYP was translated and adapted into Dutch using standard guidelines. The questionnaire was administered to Dutch children and adolescents aged 7–17 years (N = 253) with impaired vision (no restrictions regarding acuity). Data were compared to existing UK data of children and adolescents aged 10–15 years (N = 91) with VI (acuity LogMar worse than 0.48). As with the original UK FVQ_CYP validation, a rating scale model (RSM) was applied to the Dutch data. Results Minor adaptations were needed in translation-rounds. Significant differences in item responses were found between the Dutch and UK data. Item response theory assumptions were met, but fit to the RSM was unsatisfactory. Therefore, psychometric properties of the Dutch FVQ_CYP were analysed irrespective of the original model and criteria used. A graded response model led to the removal of 12 items due to missing data, low information, overlapping content and limited relevance to Dutch children. Fit indices for the remaining 24 items were adequate. Conclusions Differences in population characteristics, distribution of responses, non-invariance at the model level and small sample sizes challenged the cross-cultural validation process. However, the Dutch adapted FVQ_CYP showed high measurement precision and broad coverage of items measuring children’s functional vision. The underlying reasons for differences between countries in instrument performance are discussed with implications for future studies.

Purpose To develop a comprehensive, conceptual model detailing the aspects of a child’s life (

Background To be able to identify and monitor personal needs and goals of visually impaired young adults before and during rehabilitation trajectories, the Participation and Activity for Young Adults (PAI-YA) was developed involving young adults (18–25 years) and professionals as stakeholders. The psychometric properties of this new patient-reported outcome measure were investigated in order to develop an improved version. Methods Young adults registered at two low vision rehabilitation centers in the Netherlands were invited to complete the 141-item PAI-YA (n = 186) in a test-retest design. To select the best items for the PAI-YA, response frequencies were assessed and a graded response model (GRM) was fitted. Item reduction was informed by response frequencies, insufficient item information, and participants’ comments. Fit indices, item and person (theta) parameters were computed, after which known-group validity, concurrent validity, test-retest reliability and feasibility were studied. Results Response frequencies, violation of assumptions and item information informed the elimination of 81 items, resulting in a unidimensional PAI-YA showing satisfactory fit to the GRM. Known-group validity showed significant differences for visual impairment, financial situation, sex, educational situation and employment situation. Concurrent validity with (scales of) other questionnaires showed moderate to strong expected correlations. Test-retest reliability was satisfactory for all items (kappa 0.47–0.87), as was agreement (63.1–92.0%). Four items and one response option were added to increase feasibility. Conclusions This study contributes to the development and assessment of psychometric properties of the PAI-YA, which resulted in an improved 64-item version. Evidence was provided for construct validity, known-group validity, concurrent validity and test-retest reliability. These results are an important step in the development of a feasible instrument to investigate and monitor rehabilitation needs of visually impaired young adults, to structure the intake procedure at low vision rehabilitation services and to evaluate the effectiveness of rehabilitation.

Background Although lifestyle interventions have shown to be effective in reducing the risk for type 2 diabetes mellitus, maintenance of achieved results is difficult, as participants often experience relapse after the intervention has ended. This paper describes the systematic development of a maintenance programme for the extensive SLIMMER intervention, an existing diabetes prevention intervention for high-risk individuals, implemented in a real-life setting in the Netherlands. Methods The maintenance programme was developed using the Intervention Mapping protocol. Programme development was informed by a literature study supplemented by various focus group discussions and feedback from implementers of the extensive SLIMMER intervention. Results The maintenance programme was designed to sustain a healthy diet and physical activity pattern by targeting knowledge, attitudes, subjective norms and perceived behavioural control of the SLIMMER participants. Practical applications were clustered into nine programme components, including sports clinics at local sports clubs, a concluding meeting with the physiotherapist and dietician, and a return session with the physiotherapist, dietician and physical activity group. Manuals were developed for the implementers and included a detailed time table and step-by-step instructions on how to implement the maintenance programme. Conclusions The Intervention Mapping protocol provided a useful framework to systematically plan a maintenance programme for the extensive SLIMMER intervention. The study showed that planning a maintenance programme can build on existing implementation structures of the extensive programme. Future research is needed to determine to what extent the maintenance programme contributes to sustained effects in participants of lifestyle interventions. Electronic supplementary material The online version of this article (doi:10.1186/1471-2458-14-1108) contains supplementary material, which is available to authorized users.