The Public's Intended Uptake of Hypothetical Esophageal Adenocarcinoma Screening Scenarios: A Nationwide Survey.

INTRODUCTION: Screening for early esophageal adenocarcinoma (EAC) may potentially reduce EAC-related mortality and morbidity. This study aimed to examine the Dutch population's intended uptake of 3 hypothetical EAC screening test scenarios and preferences for potential future organization. METHODS: A total of 8,350 Dutch individuals aged 45-75 years were invited, of whom 2,258 completed a web-based survey. Participants were randomly assigned to 1 of 3 hypothetical screening test scenarios (i.e., transnasal endoscopy, ingestible cell collection device, or breath analysis). The primary outcome was intended uptake. Secondary outcomes included acceptance of screening eligibility criteria and preferences regarding invitation, counseling, and diagnostic follow-up. We performed exploratory univariable and multivariable regression analyses to assess which determinants were associated with EAC screening intent. RESULTS: Intended uptake of screening was highest in the breath analysis scenario (95%), followed by conventional upper endoscopy (78%), an ingestible cell collection device (75%), and transnasal endoscopy (68%) ( P < 0.001). Anticipating discomfort was most strongly associated with decreased intention to undergo transnasal endoscopy (odds ratio 0.18, 95% confidence interval 0.11-0.29) or swallow a cell collection device (odds ratio 0.20, 95% confidence interval 0.13-0.32). Cancer worry and high acceptance of test sensitivity/specificity were consistently associated with a positive intention to participate in screening. Inviting persons for screening based on gastroesophageal reflux disease symptoms, age, or the output of a risk prediction model was acceptable to 74%, 69%, and 66%, respectively. Inviting only men was acceptable for only 41% of women. The majority (58%) preferred to be invited by a public health organization, and 32% of the participants preferred to discuss their decision to participate with a healthcare professional. DISCUSSION: Participants in this study self-selected through a web-based survey, potentially introducing selection bias. Participants generally intended to participate in EAC screening, although the level of intent depended on the discomfort and performance associated with the offered screening test. Determining eligibility based on gastroesophageal reflux disease symptoms, age, or a risk calculator, but not sex, would be acceptable to most individuals.

Oesophageal cancer awareness and anticipated time to help-seeking: results from a population-based survey.

BACKGROUND: Modifying public awareness of oesophageal cancer symptoms might help to decrease late-stage diagnosis and, in turn, improve cancer outcomes. This study aimed to explore oesophageal cancer symptom awareness and determinants of lower awareness and anticipated time to help-seeking. METHODS: We invited 18,156 individuals aged 18 to 75 years using random sampling of the nationwide Dutch population registry. A cross-sectional web-based survey containing items adapted from the Awareness and Beliefs about Cancer measure (i.e., cancer symptom awareness, anticipated time to presentation with dysphagia, health beliefs, and sociodemographic variables) was filled out by 3106 participants (response rate: 17%). Descriptive statistics were calculated and logistic regression analyses were performed to explore determinants of awareness and anticipated presentation (dichotomised as <1 month or ≥1 month). RESULTS: The number of participants that recognised dysphagia as a potential symptom of cancer was low (47%) compared with symptoms of other cancer types (change in bowel habits: 77%; change of a mole: 93%; breast lump: 93%). In multivariable analyses, non-recognition of dysphagia was associated with male gender (OR 0.50, 95% CI 0.43-0.58), lower education (OR 0.44, 0.35-0.54), and non-western migration background (OR 0.43, 0.28-0.67). Anticipated delayed help-seeking for dysphagia was associated with not recognising it as possible cancer symptom (OR 1.58, 1.27-1.97), perceived high risk of oesophageal cancer (OR 2.20, 1.39-3.47), and negative beliefs about oesophageal cancer (OR 1.86, 1.20-2.87). CONCLUSION: Our findings demonstrate a disconcertingly low public awareness of oesophageal cancer symptoms. Educational interventions targeting groups with decreased awareness and addressing negative cancer beliefs may lead to faster help-seeking behaviour, although additional studies are needed to determine the effect on clinical cancer outcomes.

Dutch, UK and US professionals' perceptions of screening for Barrett's esophagus and esophageal adenocarcinoma: a concept mapping study.

BACKGROUND: Novel, less-invasive technologies to screen for Barrett's esophagus (BE) may enable a paradigm shift in early detection strategies for esophageal adenocarcinoma (EAC). Understanding professionals' perspectives on screening is important to determine how to proceed. We aimed to explore and compare professionals' perceptions of screening for BE and EAC screening in three countries. METHODS: In this study, 29 Dutch, 20 British and 18 American health care professionals (clinicians, researchers and policy makers) participated in concept mapping: a mixed-methods consensus building methodology. Statements on perceived barriers, facilitators, advantages, disadvantages, implications or worries associated with screening for BE and EAC were collected in asynchronous digital brainstorm sessions. Subsequently, participants sorted the statements into groups according to thematic similarity and assessed the relevance of each statement in evaluating the acceptability of BE and EAC screening. Multidimensional scaling and cluster analysis were used to map the associations between generated statements. RESULTS: Professionals across three countries identified eight consistent themes that relate to their perceptions of screening for BE and EAC: (1) Benefits, (2) Harms, (3) Clinical effectiveness concerns, (4) Screening population, (5) Screening modality, (6) Resources, (7) Ownership, and (8) Public communication. Dutch and American professionals prioritized the potential health benefits of screening but also questioned clinical impact. In contrast, British participants prioritized identification of the screening population and suitable test. CONCLUSIONS: Most professionals see potential in less-invasive screening tests for BE and EAC but underline the need to define the target screening population and determine benefits and harms before widely employing them. Successful implementation will require thoughtful consideration of the involvement of general practitioners, readiness of endoscopy and pathology services, balanced public communication, and country-specific regulations.

Professionals' views on the justification for esophageal adenocarcinoma screening: A systematic literature search and qualitative analysis.

Screening for early esophageal adenocarcinoma (EAC), including screening for its precursor Barrett's esophagus (BE), has the potential to reduce EAC-related mortality and morbidity. This literature review aimed to explore professionals' views on the justification for EAC screening. A systematic search of Ovid Medline, EMBASE, and PsycInfo, from January 1, 2000 to September 22, 2022, identified 5 original studies and 63 expert opinion articles reporting professionals' perspectives on EAC screening. Included articles were qualitatively analyzed using the framework method, which was deductively led by modernized screening principles. The analyses showed that many professionals are optimistic about technological advancements in BE detection and treatment. However, views on whether the societal burden of EAC merits screening were contradictory. In addition, knowledge of the long-term benefits and risks of EAC screening is still considered insufficient. There is no consensus on who to screen, how often to screen, which screening test to use, and how to manage non-dysplastic BE. Professionals further point out the need to develop technology that facilitates automated test sample processing and public education strategies that avoid causing disproportionately high cancer worry and social stigma. In conclusion, modernized screening principles are currently insufficiently fulfilled to justify widespread screening for EAC. Results from future clinical screening trials and risk prediction modeling studies may shift professionals' thoughts regarding justification for EAC screening.

Dutch individuals' views of screening for oesophageal cancer: a focus group study.

OBJECTIVE: Screening for early oesophageal adenocarcinoma (OAC), including its precursor Barrett's oesophagus (BO), can potentially reduce OAC-related morbidity and mortality. This study explores Dutch at-risk individuals' views of screening an at-risk population for BO/OAC. DESIGN: We invited 372 individuals with risk factors for OAC from primary care practices, 73 individuals with surveillance experience, and 221 participants of previous studies (BO/OAC screening trial or survey) to participate in focus groups. Transcripts were inductively and thematically analysed by two independent researchers. RESULTS: A total of 50 individuals (42% with gastro-oesophageal reflux symptoms) of 50-75 years participated. Themes that were raised included: theme 1 'screening intentions' describing participants' motivation to be screened (eg, early diagnosis, potential reassurance, physician recommendation, and knowing someone with cancer) or decline screening (eg, anticipated discomfort or suboptimal accuracy of the test); theme 2 'risk-based eligibility' describing the tension between effectiveness (eg, targeting high-risk individuals) and inclusivity (eg, making screening available for everyone); theme 3 'distributive justice', in which the pressure of a potential new screening programme on healthcare resources was discussed; and theme 4 'information needs' describing the perceived lack of information access and individuals' preference to discuss screening with their general practitioner. CONCLUSION: Individuals not only expressed high willingness to be screened but also voiced the concern that a new screening programme may pressure limited healthcare resources. If implemented, it is crucial to develop educational materials that meet the public's information needs and explain the test procedures and eligibility criteria while avoiding stigmatising language.

Expanding the boundaries of previously obtained informed consent in research: Views from participants in the Personalised Risk-based Mammascreening study.

INTRODUCTION: Understanding participants' concerns and information needs regarding broadened consent is crucial to ensure transparency and participant autonomy. Our study qualitatively examined these issues in women participating in the Personalized RISk-based MAmmascreening study (PRISMA). The original PRISMA informed consent was project-specific (i.e., breast cancer research), limiting the scope of secondary research. We explored participants' needs for broadened consent to preserve informed decision-making while maximising the potential re-use of data. METHODS: Focus groups (FGs) were performed following a semistructured discussion guide. Two independent researchers analysed the data thematically using an inductive approach. FINDINGS: Twenty-three asymptomatic women and 13 women diagnosed with breast cancer were randomly divided into six FGs. Four superordinate themes were identified: (1) Normalization, (2) Attitude towards the pharmaceutical industry, (3) Privacy and (4) Knowledge. Our participants viewed data sharing as an important conduit for advancing medical science. Perceived integrity was more often attributed to noncommercial than commercial parties, with a marked mistrust towards the pharmaceutical industry. Most requested information needs related to data protection. Participants' ideal consent process would confer a range of options; for example, they would be able to choose with whom data can be shared, whether data will be de-identified or anonymous, the expiration date of their consent and how, if requested, general and personal study results would be disclosed. CONCLUSION: Our participants expressed clear information needs and a strong desire to be actively engaged in future data sharing decisions. Given that many researchers collaborate with commercial parties, building public confidence in these institutions would be beneficial. Illustrative examples addressing privacy concerns and clarifying difficult terms would aid consent decision-making. Although our participants displayed great altruism in sharing their data and accepted that broad consent would ultimately facilitate future research, broad consent did not reflect their ideal situation. Dynamic consent may be an option but warrants further feasibility research. PATIENT AND PUBLIC CONTRIBUTION: Women were recruited from the general breast cancer screening population. Their perceptions and information needs, as reported in this study, will not only inform broadened consent for PRISMA but ideally guide other consent templates and decisions regarding consent processes.

Public acceptance and uptake of oesophageal adenocarcinoma screening strategies: A mixed-methods systematic review.

Oesophageal adenocarcinoma (OAC) is increasingly diagnosed and often fatal, thus representing a growing global health concern. Screening for its precursor, Barrett's oesophagus (BO), combined with endoscopic surveillance and treatment of dysplasia might prevent OAC. This review aimed to systematically explore the public's acceptance and uptake of novel screening strategies for OAC. We systematically searched three electronic databases (Ovid Medline/PubMed, Ovid EMBASE and PsycINFO) from date of inception to July 2, 2021 and hand-searched references to identify original studies published in English on acceptability and uptake of OAC screening. Two reviewers independently reviewed and appraised retrieved records and two reviewers extracted data (verified by one other reviewer). Of the 3674 unique records, 19 studies with 15 249 participants were included in the review. Thematic analysis of findings showed that acceptability of OAC screening is related to disease awareness, fear, belief in benefit, practicalities and physical discomfort. The findings were mapped on the Integrated Screening Action Model. Minimally invasive screening tests are generally well-tolerated: patient-reported outcomes were reported for sedated upper endoscopy (tolerability ++), transnasal endoscopy (tolerability +), tethered capsule endomicroscopy (tolerability +/-), and the Cytosponge-TFF3 test (acceptability ++). In discrete choice experiments, individuals mainly valued screening test accuracy. OAC screening has been performed in trials using conventional upper endoscopy (n = 231 individuals), transnasal endoscopy (n = 966), capsule endoscopy (n = 657) and the Cytosponge-TFF3 test (n = 9679), with uptake ranging from 14·5% to 48·1%. Intended participation in OAC screening in questionnaire-based studies ranged from 62·8% to 71·4%. We conclude that the general public seems to have interest in OAC screening. The findings will provide input for the design of a screening strategy that incorporates the public's values and preferences to improve informed participation. Identification of a screening strategy effective in reducing OAC mortality and morbidity remains a crucial prerequisite. Funding: This study was funded by the Netherlands Organization for Health Research and Development (ZonMw) under grant 555,004,206.

Women's health behaviour change after receiving breast cancer risk estimates with tailored screening and prevention recommendations.

BACKGROUND: The Predicting Risk of Cancer at Screening (PROCAS) study provided women who were eligible for breast cancer screening in Greater Manchester (United Kingdom) with their 10-year risk of breast cancer, i.e., low (≤1.5%), average (1.5-4.99%), moderate (5.-7.99%) or high (≥8%). The aim of this study is to explore which factors were associated with women's uptake of screening and prevention recommendations. Additionally, we evaluated women's organisational preferences regarding tailored screening. METHODS: A total of 325 women with a self-reported low (n = 60), average (n = 125), moderate (n = 80), or high (n = 60) risk completed a two-part web-based survey. The first part contained questions about personal characteristics. For the second part women were asked about uptake of early detection and preventive behaviours after breast cancer risk communication. Additional questions were posed to explore preferences regarding the organisation of risk-stratified screening and prevention. We performed exploratory univariable and multivariable regression analyses to assess which factors were associated with uptake of primary and secondary breast cancer preventive behaviours, stratified by breast cancer risk. Organisational preferences are presented using descriptive statistics. RESULTS: Self-reported breast cancer risk predicted uptake of (a) supplemental screening and breast self-examination, (b) risk-reducing medication and (c) preventive lifestyle behaviours. Further predictors were (a) having a first degree relative with breast cancer, (b) higher age, and (c) higher body mass index (BMI). Women's organisational preferences for tailored screening emphasised a desire for more intensive screening for women at increased risk by further shortening the screening interval and moving the starting age forward. CONCLUSIONS: Breast cancer risk communication predicts the uptake of key tailored primary and secondary preventive behaviours. Effective communication of breast cancer risk information is essential to optimise the population-wide impact of tailored screening.

Dutch women's intended participation in a risk-based breast cancer screening and prevention programme: a survey study identifying preferences, facilitators and barriers.

BACKGROUND: Risk-based breast cancer screening may improve the benefit-harm ratio of screening by tailoring policy to a woman's personal breast cancer risk. This study aims to explore Dutch women's preferences regarding the organisation and implementation of a risk-based breast cancer screening and prevention programme, identifying potential barriers and facilitators to uptake. METHODS: A total of 5110 participants in the Dutch Personalised RISk-based MAmmography screening (PRISMA) study were invited, of whom 942 completed a two-part web-based survey. The first part contained questions about personal characteristics; for the second part, women were randomly assigned to one of four hypothetical breast cancer risk scenarios (i.e. low, average, moderate, or high) with subsequent tailored screening and prevention advice. Descriptive statistics are used to present women's organisational preferences. Univariable and multivariable logistic regression analyses were performed using seven proxy measures for acceptability of risk-based screening (e.g., interest in risk) and risk-based prevention (e.g., willingness to change diet). RESULTS: Interest in breast cancer risk was high (80.3%). Higher assigned risk scenario was most consistently associated with acceptance of tailored screening and prevention recommendations. Increased acceptance of lifestyle changes was additionally associated with higher education. Having a first degree family history of breast cancer decreased women's motivation to participate in preventative lifestyle measures. Acceptability of medication was associated with a woman's general beliefs about the (over)use and benefit-harm balance of medication. CONCLUSIONS: Dutch women generally appear in favour of receiving their breast cancer risk estimate with subsequent tailored screening and prevention recommendations. However, women's level of acceptance depends on their assigned risk category. Offering tailored screening and prevention recommendations to low-risk women will be most challenging. Educating women on the benefits and harms of all risk-based screening and prevention strategies is key to acceptability and informed decision-making.

European women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention: a qualitative study.

BACKGROUND: Increased knowledge of breast cancer risk factors has meant that we are currently exploring risk-based screening, i.e. determining screening strategies based on women's varying levels of risk. This also enables risk management through primary prevention strategies, e.g. a lifestyle programme or risk-reducing medication. However, future implementation of risk-based screening and prevention will warrant significant changes in current practice and policy. The present study explores women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention to optimise acceptability and uptake. METHODS: A total of 143 women eligible for breast cancer screening in the Netherlands, the United Kingdom, and Sweden participated in focus group discussions. The focus group discussions were transcribed verbatim and the qualitative data was analysed using thematic analysis. RESULTS: Women from all three countries generally agreed on the overall proceedings, e.g. a risk assessment after which the risk estimate is communicated via letter (for below average and average risk) or consultation (for moderate and high risk). However, discrepancies in information needs, preferred risk communication format and risk counselling professional were identified between countries. Additionally, a need to educate healthcare professionals on all aspects of the risk-based screening and prevention programme was established. CONCLUSION: Women's insights identified the need for country-specific standardised protocols regarding the assessment and communication of risk, and the provision of heterogeneous screening and prevention recommendations, monitoring the principle of solidarity in healthcare policy.

The impact of alcohol consumption and physical activity on breast cancer: The role of breast cancer risk.

High alcohol consumption and physical inactivity are known breast cancer risk factors. However, whether the association between these lifestyle factors and breast cancer is modified by a woman's additional breast cancer risk factors has never been studied. Therefore, a population-based prospective cohort study of 57,654 Swedish women aged 40-74 years, including 957 breast cancer cases, was performed. Alcohol consumption and physical activity were measured with validated web-based self-report questionnaires. The Tyrer-Cuzick risk prediction model was used to determine a woman's 10-year risk of developing breast cancer. Logistic regression models were used to explore whether the effect of alcohol consumption and physical activity on breast cancer was modified by additional breast cancer risk factors. Findings showed that increased alcohol consumption was associated with a higher breast cancer risk (OR = 1.26, 95% CI 1.01, 1.59). However, the association between lifestyle factors (alcohol consumption and physical activity) and breast cancer was generally the same for women at below average, average and above average risk of developing breast cancer. Therefore, additional breast cancer risk factors do not appear to modify the association between lifestyle (alcohol consumption and physical activity) and breast cancer. Considering the general health benefits, preventative lifestyle recommendations can be formulated about alcohol consumption and physical activity for women at all levels of breast cancer risk.

Women's perceptions of personalized risk-based breast cancer screening and prevention: An international focus group study.

OBJECTIVE: Increased knowledge of breast cancer risk factors enables a shift from one-size-fits-all breast cancer screening to a risk-based approach, tailoring screening policy to a woman's individual risk. New opportunities for prevention will arise. However, before this novel screening and prevention program is introduced, its acceptability from a woman's perspective needs to be explored. METHODS: Women eligible for breast cancer screening in the Netherlands, United Kingdom, and Sweden were invited to take part in focus groups. A total of 143 women participated. Data were transcribed verbatim and analyzed using thematic analysis. RESULTS: Analysis identified five themes across the three countries. The first theme "impact of knowledge" describes women's concern of not being able to unlearn their risk, perceiving it as either a motivator for change or a burden which may lead to stigma. The second theme "belief in science" explains women's need to trust the science behind the risk assessment and subsequent care pathways. Theme three "emotional impact" explores, eg, women's perceived anxiety and (false) reassurance, which may result from knowing their risk. Theme four "decision making" highlights cultural differences in shared versus individual decision making. Theme five "attitude to medication" explores the controversial topic of offering preventative medication for breast cancer risk reduction. CONCLUSIONS: Acceptability of risk-based screening and prevention is mixed. Women's perceptions are informed by a lack of knowledge, cultural norms, and common emotional concerns, which highlights the importance of tailored educational materials and risk counselling to aid either shared or individual informed decision making.

Women's decision-making regarding risk-stratified breast cancer screening and prevention from the perspective of international healthcare professionals.

INTRODUCTION: Increased knowledge of breast cancer risk factors may enable a paradigm shift from one-size-fits-all breast cancer screening to screening and subsequent prevention guided by a woman's individual risk of breast cancer. Professionals will play a key role in informing women about this new personalised screening and prevention programme. Therefore, it is essential to explore professionals' views of the acceptability of this new programme, since this may affect shared decision-making. METHODS: Professionals from three European countries (the Netherlands, United Kingdom, and Sweden) participated in digital concept mapping, a systematic mixed methods approach used to explore complex multidimensional constructs. RESULTS: Across the three countries, professionals prioritised the following five themes which may impact decision-making from the perspective of eligible women: (1) Anxiety/worry; (2) Proactive approach; (3) Reassurance; (4) Lack of knowledge; and (5) Organisation of risk assessment and feedback. Furthermore, Dutch and British professionals expressed concerns regarding the acceptability of a heterogeneous screening policy, suggesting women will question their risk feedback and assigned pathway of care. Swedish professionals emphasised the potential impact of the programme on family relations. CONCLUSIONS: The perspectives of Dutch, British, and Swedish professionals of women's decision-making regarding personalised breast cancer screening and prevention generally appear in line with women's own views of acceptability as previously reported. This will facilitate shared decision-making. However, concerns regarding potential consequences of this new programme for screening outcomes and organisation need to be addressed, since this may affect how professionals communicate the programme to eligible women.

Women's perceptions of the adoption of personalised risk-based breast cancer screening and primary prevention: a systematic review.

INTRODUCTION: Increased knowledge of breast cancer risk factors may enable a paradigm shift from the current age-based mammographic screening programmes to a personalised risk-based approach. This would warrant a significant change in practice, yet the acceptability from a woman's perspective has never been systematically explored. In this systematic review, we inventoried and appraised studies of women's perceptions of risk-based breast cancer screening and prevention to identify factors associated with adopting this new paradigm. METHODS: We searched Medline, Embase and PsycInfo to identify original articles in English containing perceptions of risk-based breast cancer screening and/or primary prevention of women with an average to above average risk of developing breast cancer. Qualitative data were systematically extracted and referenced against four theoretical models of preventative health behaviour adoption. RESULTS: When considering the adoption of this novel screening and prevention programme, women carefully review their perceived susceptibility to breast cancer. Their decisions are based on a cost-benefit analysis of adopting lifestyle changes, chemoprevention, or prophylactic surgery, taking into account their perceived competence, individual autonomy, relatedness to others, and personal preference. The role of intent is limited when considering behavioural change. CONCLUSIONS: Implementing risk-based breast cancer screening and prevention will require a multifactorial approach. The transition from theory to practice can be supported by developing evidence-based shared decision aids and family-oriented (genetic) counselling programmes.

Are we ready for the challenge of implementing risk-based breast cancer screening and primary prevention?

BACKGROUND: Increased knowledge of breast cancer risk factors provides opportunities to shift from a one-size-fits-all screening programme to a personalised approach, where screening and prevention is based on a woman's risk of developing breast cancer. However, potential implementation of this new paradigm could present considerable challenges which the present review aims to explore. METHODS: Bibliographic databases were searched to identify studies evaluating potential implications of the implementation of personalised risk-based screening and primary prevention for breast cancer. Identified themes were evaluated using thematic analysis. RESULTS: The search strategy identified 5699 unique publications, of which 59 were selected for inclusion. Significant changes in policy and practice are warranted. The organisation of breast cancer screening spans several healthcare delivery systems and clinical settings. Feasibility of implementation depends on how healthcare is funded and arranged, and potentially varies between countries. Piloting risk assessment and prevention counselling in primary care settings has highlighted implications relating to the need for extensive additional training on risk (communication) and prevention, impact on workflow, and professionals' personal discomfort breaching the topic with women. Additionally, gaps in risk estimation, psychological, ethical and legal consequences will need to be addressed. CONCLUSION: The present review identified considerable unresolved issues and challenges. Potential implementation will require a more complex framework, in which a country's healthcare regulations, resources, and preferences related to screening and prevention services are taken into account. However, with the insights gained from the present overview, countries expecting to implement risk-based screening and prevention can start to inventory and address the issues that were identified.

Comprehending the impact of low vision on the lives of children and adolescents: a qualitative approach.

PURPOSE: To develop a comprehensive, conceptual model detailing the aspects of a child's life (<18 years) that are affected by low vision. METHODS: Three stakeholders were involved in the developmental process of the conceptual model: children and adolescents with a visual impairment (n = 40), parents of children with a visual impairment (n = 25) and professionals of multidisciplinary rehabilitation centres and specialised schools (n = 25). Qualitative methods including focus groups, online and face-to-face brainstorming sessions and concept mapping were used to investigate the impact of visual impairment on the lives of children and adolescents and to create the conceptual model. To aid interpretation of the large age range, four age-bands were formed. RESULTS: For each age-band (0-2, 3-6, 7-12 and 13-17 years), a total of 153, 200, 297 and 306 statements were generated by all stakeholders, respectively. The conceptual models show that low vision affects the sensorial development as well as the physical, psychological and social well-being of children and adolescents. In addition, identified external factors (i.e. education/employment and parental influence) can either facilitate or hinder participation. CONCLUSIONS: The developed model shows which life aspects of children are affected by low vision. The needs identified by children and adolescents correspond not entirely to the perspective of parents and low vision professionals. Future research should focus on developing and validating a new questionnaire based on the conceptual model. This will aid goal setting, rehabilitation referral and the accomplishment of developmental milestones and life transitions of children and adolescents with a visual impairment, ultimately improving their participation and quality of life.

Investigating rehabilitation needs of visually impaired young adults according to the International Classification of Functioning, Disability and Health.

PURPOSE: To gain qualitative insight into the rehabilitation needs of visually impaired young adults (18-25 years) and how these needs relate to the International Classification of Functioning, Disability and Health (ICF) and patient characteristics. METHODS: Rehabilitation needs and patient characteristics of young adults (N = 392) who applied for multidisciplinary services in 2012 and 2013 were obtained from structured and semi-structured intake records. Linking rules were used to assess how the needs related to Environmental Factors, Body Functions, Body Structures, and Activity and Participation (A&P) ICF components. The relationship between the type of rehabilitation goal and patient characteristics was assessed using multivariate logistic regression analyses. RESULTS: Most rehabilitation needs (67.6%; N = 510) were found on the A&P component of the ICF. Most prevalent needs were related to 'major life areas' (e.g. finding internship or job), followed by the chapters: 'mobility' (e.g. self-reliance in travelling), 'communication' (e.g. using communication devices and techniques), 'general tasks and demands' (e.g. psychological aspects of vision loss) and 'domestic life' (e.g. household tasks). Patients in one of the multidisciplinary rehabilitation centres (odds ratio (OR) = 7.07; 95% confidence interval (CI) [2.97-16.83]) and patients with comorbidity (OR = 3.82; 95% CI [1.62-9.02]) were more likely to report rehabilitation needs related to chapter E3 'support and relationships'. CONCLUSION: 'Major life areas' prevail in the content of rehabilitation needs, but tend to overshadow topics regarding peer interaction and social, community and civic life. A suitable survey method for young adults with visual impairments is required that contains rehabilitation domains and goals relevant to their lives and development.

Why visually impaired older adults often do not receive mental health services: the patient's perspective.

PURPOSE: Older adults with a visual impairment are particularly vulnerable for increased depression and anxiety symptoms; however, they tend to underutilise mental health services. The present study aims to characterise the perceived need for and barriers to use mental health services in visually impaired older adults based on Andersen's behavioural model. METHODS: A cross-sectional study in 871 visually impaired older adults (mean age 73 years) from outpatient low vision rehabilitation services was conducted. A multinomial logistic regression analysis was performed to assess potential-related factors to perceived need for mental health services, measured with the Perceived Need for Care Questionnaire (PNCQ). RESULTS: About 35 % of the population had subthreshold depression and/or anxiety, and 13 % had a mood and/or anxiety disorder according to the DSM-IV. Almost 34 % of the participants with an actual disorder did not receive mental health services, even though 57 % perceived to be in need of these services. Participants who had more severe depression and/or anxiety, comorbid depression and anxiety, no history of major depressive disorder, a lower perceived health status and a younger age were more likely to be in need of mental health services. Barriers to receive these services were lack of knowledge and self-reliance. CONCLUSIONS: Findings support the implementation of counselling methods, instead of medication, and patient empowerment to reduce an unmet need of mental health services in visually impaired older adults, for which extensive research is warranted.

Measurement properties of questionnaires assessing participation in children and adolescents with a disability: a systematic review.

PURPOSE: To critically appraise the measurement properties of questionnaires measuring participation in children and adolescents (0-18 years) with a disability. METHODS: Bibliographic databases were searched for studies evaluating the measurement properties of self-report or parent-report questionnaires measuring participation in children and adolescents (0-18 years) with a disability. The methodological quality of the included studies and the results of the measurement properties were evaluated using a checklist developed on consensus-based standards. RESULTS: The search strategy identified 3,977 unique publications, of which 22 were selected; these articles evaluated the development and measurement properties of eight different questionnaires. The Child and Adolescent Scale of Participation was evaluated most extensively, generally showing moderate positive results on content validity, internal consistency, reliability and construct validity. The remaining questionnaires also demonstrated positive results. However, at least 50 % of the measurement properties per questionnaire were not (or only poorly) assessed. CONCLUSIONS: Studies of high methodological quality, using modern statistical methods, are needed to accurately assess the measurement properties of currently available questionnaires. Moreover, consensus is required on the definition of the construct 'participation' to determine content validity and to enable meaningful interpretation of outcomes.

Evaluating rehabilitation goals of visually impaired children in multidisciplinary care according to ICF-CY guidelines.

PURPOSE: To gain qualitative insight into the rehabilitation goals of visually impaired children and how these goals relate to the structure of the International Classification of Functioning, Disability and Health (ICF) and patient characteristics. METHODS: A patient record study was conducted, analysing rehabilitation goals and characteristics of children with a suspected visual impairment in the Netherlands (<18 years) who applied for multidisciplinary services in 2012 (N = 289). Chi-square analyses for trend in rehabilitation content across age bands and additional analyses were performed. RESULTS: The three most common diagnoses were nystagmus (21.2%), cerebral visual impairment (16.2%) and albinism (6.1%). Rehabilitation goals for children aged <7 years were mostly aimed at 'physical (visual) functioning' (36.7%) and 'environmental factors' (36.7%). For children ≥7 years, significantly more goals were identified on activity and participation (A&P) domains (52.2%). Three A and P domains presented a significant linear trend on the number of rehabilitation goals across age bands: (1) 'Learning and applying knowledge' (13.042, p < 0.001), (4) 'Mobility' (31.340, p < 0.001) and (8) 'Major life areas' (5.925, p = 0.015). Regression analysis showed that both age and visual acuity significantly contributed to the number of A and P goals. CONCLUSION: Although analyses were based on a selection of patient records, the number and nature of rehabilitation goals differ significantly with age. Many A and P goals seem underrepresented at the intake procedure, for example: communication, peer interaction and participating in leisure activities. A systematic, standardized procedure is required to catalogue all existing goals and to be able to evaluate progress and potential new or other important goals.