Partners' experiences of living with a person with an eating disorder: A grounded theory study.

AIM: To explore the experiences of intimate partners of people with an eating disorder. DESIGN: Qualitative grounded theory study. METHODS: In-depth interviews were conducted with 18 partners of people with an eating disorder from 2013-2016. Data were analysed using the principles of classic grounded theory including, concurrent data collection and analysis, theoretical sampling, constant comparative analysis and memo writing. RESULTS: Partners encounter disruptions to their lives when their significant other experiences an eating disorder. As a result, partners engage in a four-stage cyclical process involving: encountering a disruption; becoming an informed self; countering the disruption and reclaimed livability. By engaging in this process partners learn to support their significant other, remain committed to the relationship and recover their own lives. The process is drawn together and defined as the theory of 'Reconstructing Livability'. CONCLUSION: The theory of 'Reconstructing Livability' provides a unique conceptualization of the experiences of partners who are living with a person with an eating disorder. It highlights the challenges faced by partners when supporting the recovery of their significant other and the intimate relationship, while reclaiming their own lives. IMPACT: This study addresses the dearth of knowledge and understanding of partners' experiences. Partners engage in a process to enable them support recovery of their significant other and their own lives, but this is hindered by the challenges and unmet needs they experience. The theory provides a basis on which nurses can provide effective and timely supports to partners.

The Leadership and Organizational Context Required to Support Patient Partnerships.

Healthcare providers and managers typically design programs based on what they believe patients need and want. Yet patients have knowledge and insight into how the system can be changed to better meet their needs, improve outcomes and reduce costs. We describe challenges in creating a culture of patient partnerships and the leadership actions and organizational context required now and in the future to support engagement-capable environments at the organizational and policy levels in Canada. Case examples illustrate the need for leaders to set clear expectations, develop the infrastructure to support patient partnerships and provide education to staff, physicians and patient partners.

The Effects of the Transforming Care at the Bedside Program on Perceived Team Effectiveness and Patient Outcomes.

The objective of the study was to document the impact of Transforming Care at the Bedside (TCAB) program on health care team's effectiveness, patient safety, and patient experience. A pretest and posttest (team effectiveness) and a time-series study design (patient experience and safety) were used. The intervention (the TCAB program) was implemented in 8 units in a multihospital academic health science center in Montreal, Quebec, Canada. The impact of TCAB interventions was measured using the Team Effectiveness (TCAB teams, n = 50), and Clostridium difficile-associated diarrhea and vancomycin-resistant Enterobacter rates (patient safety) and Hospital Consumer Assessment of Healthcare Providers and Systems (patient experience; n = 551 patients). The intervention was composed of 4 learning modules, each lasting 12 to 15 weeks of workshops held at the start of each module, combined with hands-on learning 1 day per week. Transforming Care at the Bedside teams also selected 1 key safety indicator to improve throughout the initiative. Pretest and posttest differences indicate improvement on the 5 team effectiveness subscales. Improvement in vancomycin-resistant Enterococcus rate was also detected. No significant improvement was detected for patient experience. These findings call to attention the need to support ongoing quality improvement competency development among frontline teams.

Healthcare for the Aging Citizen and the Aging Citizen for Healthcare: Involving Patient Advisors in Elder-Friendly Care Improvement.

With an aging population and a healthcare system that is overly reliant on providing expensive and sometimes problematic hospital-based care for older Canadians, driving improvements that promote elder-friendly care has never been more critical. The Acute Care for Elders (ACE) Strategy at Toronto's Mount Sinai Hospital is the focus of a pan-Canadian collaborative delivered by the Canadian Foundation for Healthcare Improvement in partnership with the Canadian Frailty Network. The intent is to spread the ACE Strategy's elder-friendly models of care and practices to 18 participating healthcare delivery organizations. A key element of the ACE Collaborative is the inclusion of patient advisors as members of the 18 teams. This article considers the development of elder-friendly care models and practices, with lessons for patient advisors and organizations on the necessary skill-mix, as well as lessons for providers and managers on ways to more effectively engage patient advisors in health system improvement to better serve an aging population.

The Experience of Patients Engaged in Co-designing Care Processes.

This article presents the experiences of patients engaged in co-designing care under a program entitled, "Transforming Care at the Bedside," based at an academic health sciences center. This descriptive, qualitative study collected data through individual interviews. Participants included patients from 5 units in an academic health sciences center in Quebec, Canada. A total of 6 individual interviews were conducted in November 2014, 15 months after the Transforming Care at the Bedside work began in September 2013. Content analysis was used to analyze the qualitative data. Being listened to and informed gave patients an opportunity to better understand patient needs and the complexity of care in the unit and in the organization. The experience enabled patients to better translate the patient experience for the team's benefit and influence the team's perspective and decisions. Through this experience, several patients felt motivated and empowered and that they afforded consideration through this experience. This study highlights the importance of creating opportunities for patients and health care providers to share their unique experiences and expertise to better understand each other's reality. In this context, they developed a more comprehensive understanding of the issues and worked together to implement realistic changes on behalf of the patients.

Expanding patient engagement in quality improvement and health system redesign: Three Canadian case studies.

Healthcare organizations face growing pressures to increase patient-centred care and to involve patients more in organizational decisions. Yet many providers worry that such involvement requires additional time and resources and do not see patients as capable of contributing meaningfully to decisions. This article discusses three efforts in four organizations to engage patients in quality improvement efforts. McGill University Health Centre, Saskatoon Health Region, and Vancouver Coastal and Fraser Health Regions all engaged patients in quality improvement and system redesign initiatives that were successful in improving care processes, outcomes, and patient experience measures. Patient involvement in redesigning care may provide a way to demonstrate the value of patients' experiences and inputs into problem-solving, building support for their involvement in other areas. Further study of these cases and a broader survey of organizational experiences with patient involvement may help elucidate the factors that support greater patient engagement.

Intraoperative radiocolloid injection for sentinel node biopsy postneoadjuvant chemotherapy.

BACKGROUND: This study sought to determine significance of radiocolloid injection timing for sentinel node biopsy (SNB) after neoadjuvant chemotherapy (NAC). MATERIAL AND METHODS: A retrospective comparison of intraoperative (IRCI) and preoperative (PRCI) radiocolloid injection for SNB was performed in breast cancer patients who had completed NAC. The sentinel node identification rate (SNIDR) was tested for noninferiority by a two-proportion z-test. The differences between clinical demographics, pathologic demographics, and SNIDR were evaluated by Fisher exact test. The difference in the number of sentinel nodes removed was analyzed by two-sample t-test. RESULTS: In the 6-y study period, 120 SNB were performed after NAC: 84 received PRCI and 36 received IRCI. The two groups were similar except there were fewer clinical T2 and more clinical T3 and T4 with IRCI (P = 0.0008). The SNIDR was 92.9% with PRCI and 80.6% with IRCI. By two-proportion z-test, IRCI was not "noninferior" (P = 0.5179). By Fisher exact test, the SNIDR of the two groups did not differ. The SNIDR differs only in patients who experience T downstaging (100% versus 80%, P = 0.0173). The mean number of lymph nodes removed was higher with IRCI: 3.38 versus 2.49 nodes (P = 0.0068). There were more positive SNB with IRCI: 32.1% versus 55.2%, (P = 0.0432). The incidence of nontherapeutic axillary dissection was similar between the two groups (3.6% for PRCI versus 5.6% for IRCI). CONCLUSIONS: IRCI for SNB after NAC may be inferior to PRCI.

Effective Strategies to Spread Redesigning Care Processes Among Healthcare Teams.

PURPOSE: The purpose of this study was to describe how spread strategies facilitate the successful implementation of the Transforming Care at the Bedside (TCAB) program and their impact on healthcare workers and patients in a major Canadian healthcare organization. DESIGN: This study used a qualitative and descriptive design with focus groups and individual interviews held in May 2014. Participants included managers and healthcare providers from eight TCAB units in a university health center in Quebec, Canada. The sample was composed of 43 individuals. METHODS: The data were analyzed using NVivo according to the method proposed by Miles and Huberman. FINDINGS: The first two themes that emerged from the analysis are related to context (organizational transition requiring many changes) and spread strategies for the TCAB program (senior management support, release time and facilitation, rotation of team members, learning from previous TCAB teams, and engaging patients). The last theme that emerged from the analysis is the impact on healthcare professionals (providing front-line staff and managers with the training they need to make changes, team leadership, and increasing receptivity to hearing patients' and families' needs and requests). CONCLUSIONS: This study describes the perspectives of managers and team members to provide a better understanding of how spread strategies can facilitate the successful implementation of the TCAB program in a Canadian healthcare organization. CLINICAL RELEVANCE: Spread strategies facilitate the implementation of changes to improve the quality and safety of care provided to patients.

Transforming Care at the Bedside: managers' and health care providers' perceptions of their change capacities.

BACKGROUND: The Transforming Care at the Bedside (TCAB) project engages frontline health care providers as the leaders of change and improvement efforts in their work environment. This study explored how health care providers and managers from three TCAB units in a university-affiliated health care center perceived the development of their change capacities following their involvement in this program. METHOD: This descriptive, qualitative study involved focus groups and individual interviews. RESULTS: Participants learned to work as a team and to expand their outlook. They had access to processes and tools to learn new skills. New relationships also developed among the various players, and they shared new roles, which enabled them to translate the desired changes into action and make the results visible. CONCLUSION: The study showed the TCAB program helps develop health care providers' and managers' change capacities.

Risk Factors and Modifiers for Cardiovascular Disease Assessment of Patients with Heterozygous Familial Hypercholesterolaemia.

Background: The assessment of the risk of cardiovascular disease (CVD) in patients with heterozygous familial hypercholesterolemia (HeFH) is determined by conventional risk factors. However, factors modifying CVD, or risk modifiers, beyond conventional risk factors may inform their CVD risk assessment and the subsequent use of new therapies. This work identifies and characterises patients within a lipid clinic cohort with regards to conventional CVD risk factors and risk modifiers with a focus on those with HeFH. Methods: A study of consecutive adult patients attending our specialist lipid clinic was performed over a six-month period. The patient data recorded included demographics, clinical characteristics, risk factors and risk modifiers, biochemical profiles and genetic testing results. Risk modifiers were identified based on ESC/EAS guidance, and those with HeFH were compared to those without. Results: A total of 370 patients were included. Of these, 98 HeFH patients were identified (26%). Then, 52% of HeFH patients were stratified into the very-high risk category due to the presence of CVD risk factors. Risk modifiers were present in 73%. These included a family history of premature CVD (56%), obesity (28%), a sedentary lifestyle (13%) and a major psychiatric disorder (12%). Compared to the rest of the cohort, those with HeFH were less likely to have hypertension and more likely to have a family history of premature CVD. Conclusions: Half of patients with HeFH are categorised as having very high CV risk. Consideration of risk modifiers, particularly a family history of premature CV disease, increases this very-high-risk category further. This may have implications for the clinical application and access to novel treatments.

An exploration of patient experiences of transitioning to a remote day programme following inpatient treatment in an adult eating disorder service.

WHAT IS KNOWN ON THE SUBJECT?: Traditionally, treatment for eating disorders (EDs) has been provided on an inpatient or outpatient basis, but more recently other levels of treatment provision to include, day care (DC) and community outreach programmes, have been developed. There is limited research exploring the experience of patients who have transitioned from inpatient ED treatment to a remote DC treatment. This lack of knowledge can impact mental health nurses' understanding of what that experience is like for patients and hence may influence the efficacy of collaboration and inclusion between patients and nurses. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This research addresses this dearth of knowledge and adds to our understanding of patients' experiences of attending a remote DC programme following a period of inpatient treatment for an ED. This is an important study for nurses and other mental health professionals working with people in ED treatment, as it highlights the specific challenges and anxieties of transitioning from inpatient to a remote DC programme and the individualized supports advisable during this process. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: This research provides a basis on which nurses can understand and address the challenges experienced by patients after transitioning to a less intensive supportive ED programme. The understanding of these experiences will enhance the therapeutic alliance between the nurse and patient, which will in turn support the patient in increasing agency as they progress through their recovery. This research provides a foundation on which to develop specific supports that need to be in place to help patients manage the anxieties they experience as they transition to a less intense and remote treatment. Findings from these lived experiences can be used to support the development of similar DC programmes for EDs in other settings. ABSTRACT: INTRODUCTION: Day care (DC) treatment for people with an eating disorder (ED) provides for an easier transition from hospital to home, along with a treatment milieu where patients can maintain occupational and social functioning and allow for the transfer of newly acquired skills to everyday life. AIM: To explore patients' experiences of attending a remote day programme following intense inpatient treatment in an adult ED service. METHOD: A qualitative descriptive methodology informed the study. In-depth semi-structured interviews were conducted with 10 consenting patients. A thematic analysis framework was used to guide the process of data analysis. RESULTS: Three themes reflected participants' experiences: 'Moving On: Preparing for Change', 'Navigating a New Support System' and 'Increasing Agency'. DISCUSSION: An underlying issue for participants was an ongoing but changing experience of anxiety. While anticipatory anxiety is evident in preparing for discharge, this is replaced with a real-time anxiety as they endeavour to negotiate an effective support network. IMPLICATIONS FOR PRACTICE: The findings from this study provide a basis on which mental health nurses can develop timely and effective treatment and support systems with patients who are transitioning from a high support inpatient ED programme to a less intensive ED remote DC programme.

The DA VINCI study: is Ireland achieving ESC/EAS guideline-directed LDL-C goals?

BACKGROUND: The EU-wide, cross-sectional observational study of lipid-lowering therapy (LLT) use in secondary and primary care (DA VINCI) assessed the proportion of patients achieving low-density lipoprotein cholesterol (LDL-C) goals recommended by the European Society of Cardiology (ESC)/European Atherosclerosis Society (EAS) guidelines and provided an insight into regional use of LLT in Europe, including Ireland. AIMS: This analysis focuses on data from patients in Ireland who participated in the DA VINCI study. METHODS: The DA VINCI study enrolled patients receiving LLT at primary and secondary care sites across 18 European countries between June 2017 and November 2018. The study assessed the achievement of risk-based 2016 and 2019 ESC/EAS LDL-C goals. This subgroup analysis aimed to evaluate LDL-C goal attainment in an Irish cohort of primary and secondary care patients. RESULTS: In total, 198 patients from Ireland were enrolled from three primary care and three secondary care centres. Most patients were White and male, and were receiving moderate- or high-intensity statin therapy (most frequently atorvastatin or rosuvastatin). Few patients (< 10%) were receiving combination therapy of statin and ezetimibe. Approximately 60% of patients achieved their 2016 ESC/EAC LDL-C goals while less than half the patients achieved their 2019 ESC/EAS goals. Approximately half of secondary prevention patients achieved their 2016 ESC/EAS goals and only 20% of secondary prevention patients achieved their 2019 ESC/EAS goals. CONCLUSIONS: These results highlight the disparity between dyslipidaemia management in clinical practice in Ireland and guideline recommendations. TRIAL REGISTRATION: ENCePP; EU PAS 22,075; date registered 06 February 2018.

Abbreviated lipid guidelines for clinical practice : Based on ESC lipid guidelines 2019 and ESC cardiovascular disease prevention in clinical practice guidelines 2021.

BACKGROUND: Lipid disorders are now considered causal for atherosclerotic cardiovascular disease (ASCVD) which remains one of the most important contributors to morbidity and mortality in the developed world. Identification and early treatment of lipid disarrays remains the cornerstone of good clinical practice to prevent, halt and even reverse ASCVD. Guidelines for lipid management are imperative to help promote good clinical practice. Given the detail involved in comprehensive guidelines and the multiple areas of knowledge required by clinical practitioners, abbreviated, easy to understand, practical versions of guidelines are required to ensure dissemination of the most important information. The recent ESC lipid guidelines 2019 and the ESC guidelines on CVD prevention in clinical practice 2021 (1,2), provide an excellent detailed summary of all the latest evidence supporting lipid interventions that reduce ASCVD. METHOD: We therefore developed a single-page document with hyperlinks to help practitioners gain easy access to practical information on lipid management. It has been developed for future electronic use in clinical practice. CONCLUSION: It is presented here in a tabular format together with printable versions of the associated hyperlinks that provide the additional information required in decision making. It is hoped to audit the impact of this approach to help guide future ways of disseminating the latest clinical guideline updates.

Shared care for chronic eye diseases: perspectives of ophthalmologists, optometrists and patients.

OBJECTIVE: To report the perspectives of optometrists, ophthalmologists and patients on a model of shared care for patients with chronic eye diseases. DESIGN, SETTING AND PARTICIPANTS: Qualitative study of a model of shared care between optometrists and ophthalmologists for patients with stable age-related macular degeneration, diabetic retinopathy and glaucoma, trialled by the Royal Victorian Eye and Ear Hospital in Melbourne during 2007­2009. Semi-structured interviews were conducted with optometrists, ophthalmologists and patients at completion of the project to obtain their perspectives on this model. RESULTS: Seventeen optometrists submitted expressions of interest to participate, and 12 completed web-based training modules and clinical observerships and adhered to specified examination and reporting protocols. All five participating ophthalmologists and 11 of the optometrists were interviewed. Ninety-eight patients participated and 37 were interviewed. Optometrists not only met ophthalmologists' expectations but exceeded them, appropriately detecting and referring patients with additional, previously undetected conditions. Patients reported savings in travel time and were satisfied with the quality of care they received. Optometrists, ophthalmologists and patients indicated a general acceptance of shared care arrangements, although there were some issues relating to interprofessional trust. CONCLUSIONS: Shared care between local optometrists and hospital-based ophthalmologists can help to reduce patient waiting time for review and offers an opportunity for these two groups of eye care professionals to collaborate in providing localised care for the benefit of patients. However, trust and relationship building need to be further developed.

Clinical characteristics of two groups commonly referred to an Irish hypertension service-patients with resistant hypertension and young adults with hypertension.

BACKGROUND: The management of hypertension is primarily performed in primary care settings in many health systems. However, two groups of patients often require specialist input: patients with resistant hypertension (RH) and young adults with hypertension. AIMS: To elucidate these groups by examining the characteristics of patients attending an Irish hypertension service, thus informing future management of hypertension. METHODS: Patients were recruited at consecutive hypertension clinics at St James Hospital, Dublin from July to September 2019. Following patient consent, patient data were recorded to identify patient characteristics as well as the results of investigations, blood pressure (BP) measurements and the anti-hypertensive treatment of the study participants which were then analysed. RESULTS: Two hundred thirty-six patients were included in the study. Compared to those without RH, the RH group were more likely to be obese (OR 2.59 [95% CI 1.06 to 6.33]), to have cardiovascular disease (OR 3.07 [95% CI 1.56 to 6.02]) and to have a non-dipping BP pattern (OR 3.86 [95% CI 1.57 to 9.47]). Young adults comprised 27% of the cohort. Forty-seven percent of these patients were obese, 15.9% had hypertension in pregnancy and 22.2% had chronic headaches. Despite being prescribed less anti-hypertensives (1.41 vs 2.28; p < 0.05), the majority of young patients had a BP less than 140/90 mmHg, comparing favourably with older patients (OR 2.25 [95% CI 1.20 to 4.27]). CONCLUSION: This contemporary study highlights the high prevalence of obesity among RH patients and young adults with hypertension. Findings suggest that programs to combat hypertension must include interventions to address obesity.

Referrals to, and characteristics of patients attending a specialist hypertension clinic.

The management of hypertension is suboptimal in Ireland and internationally. The role of a specialist hypertension clinic is not always defined but an analysis of the reasons for referral are likely informative. Also, a description of the clinical characteristics of patients with hypertension will inform requirements for comprehensive hypertension management in the community and secondary care. Patients were recruited at consecutive hypertension clinics at St James Hospital, Dublin from July to September 2019. Reasons for referral, clinical characteristics of patients, their investigations and treatment were analyzed. 236 patients were included in the study. The majority of patients, 83%, were obese or overweight. A family history of hypertension was a frequent finding with 70.8% of patients reporting same. 26.7% of patients were under the age of 40. 78% of referrals were from primary care and the most referrals were to investigate secondary causes of hypertension or because the patient was ≤40 years of age. Calcium channel blockers were the treatment most frequently prescribed (51.7%). Clinic blood pressure for the cohort was 137/81 mmHg and this was replicated by their ambulatory BP. This insight into the contemporary management of hypertension highlights the frequency of obesity and a positive family history in those with hypertension. Most referrals were consistent with international guidance though deviations were evident. Findings suggest a national program for hypertension with greater focus on public health interventions and better resourcing of primary care is required.

Establishing the service potential of secondary level low vision clinics.

PURPOSE: To determine the proportion of people with low vision who can be adequately managed at a secondary level low vision clinic where only low to moderate magnification low vision devices (LVDs) and basic rehabilitation services are provided. METHODS: A retrospective study of clinical records of participants who attended low vision rehabilitation services (Vision Australia) for the first time between 2000 and 2002 was conducted. Information regarding main cause of vision loss, goals of vision rehabilitation, types of LVDs purchased, and type of services received was examined. RESULTS: Of the 192 participants studied, 65% were female and the mean age was 76 years (range, 19 to 100 years). Most participants had mild (35%) to moderate (49%) vision impairment. Seventy percent (134) of participants purchased some type of LVDs. Near adds of low magnification (1 to 2×) were the most common aid preferred by participants (n=54) followed by handheld magnifiers of moderate magnification (2.5 to 5×; (n=52). Only 10 of the 134 LVDs (8%) purchased were of high magnification (>5×). In addition, only 46 of the 192 participants (24%) attended tertiary level rehabilitation with orientation and mobility (O&M) instructors and/or occupational therapists. Along with the six participants who required high magnification LVDs but no O&M or OT services, in total, 27% (52/192) required tertiary level low vision care. CONCLUSIONS: A secondary level low vision clinic is likely to meet the needs of >70% of people with vision impairment. It would play an important role in vision rehabilitation especially in countries where a wide range of services are available.

Levels of Prebeta-1 High-Density Lipoprotein Are a Strong Independent Positive Risk Factor for Coronary Heart Disease and Myocardial Infarction: A Meta-Analysis.

Background We previously showed that levels of prebeta-1 high-density lipoprotein (HDL), the principal acceptor of cholesterol effluxed from cells, including artery wall macrophages, are positively associated with coronary heart disease (CHD) and myocardial infarction (MI) risk. Methods and Results In a multiethnic follow-up cohort of 1249 individuals from University of California-San Francisco clinics, we determined the degree to which prebeta-1 HDL levels, both absolute and percentage of apolipoprotein AI, are associated with CHD and history of MI. Independent, strong, positive associations were found. Meta-analysis revealed for the absolute prebeta-1 HDL for the top tertile versus the lowest, unadjusted odds ratios of 1.90 (95% CI, 1.40-2.58) for CHD and 1.79 (95% CI, 1.35-2.36) for MI. For CHD, adjusting for established risk factors, the top versus bottom tertiles, quintiles, and deciles yielded sizable odds ratios of 2.37 (95% CI, 1.74-3.25, P<0.001), 3.20 (95% CI, 2.07-4.94, P<0.001), and 4.00 (95% CI, 2.11-7.58, P<0.001), respectively. Men and women were analyzed separately in a combined data set of 2507 individuals. The odds ratios for CHD and MI risk were similar. Higher levels of prebeta-1 HDL were associated with all 5 metabolic syndrome features. Addition of prebeta-1 HDL to these 5 features resulted in significant improvements in risk-prediction models. Conclusions Analysis of 2507 subjects showed conclusively that levels of prebeta-1 HDL are strongly associated with a history of CHD or MI, independently of traditional risk factors. Addition of prebeta-1 HDL can significantly improve clinical assessment of risk of CHD and MI.

Costs of vision impairment in childhood and youth: diary case studies.

PURPOSE: Children and youth with vision impairment face a lifetime of vision-related costs. This paper examines the little-known personal costs incurred in these early years. METHODS: Case studies of three children and one youth with vision impairment were extracted from a larger, diary-based prospective study of the personal expenditure of people with vision impairment. Diaries were maintained over a 12 month period and expenditure and resource utilization were recorded under four main headings: medicines, products and equipment; health and community services; informal care and support; and other expenses. RESULTS: The scale of direct and indirect costs incurred differed by age at onset and duration of vision impairment. The highest personal costs were accrued for equipment. Informal care and support accounted for the highest indirect costs listed. Reliance on family meant that opportunity costs of relatives rather than out-of-pocket personal costs applied. Assistance from family members was consistently required in relation to transport, personal affairs, and reading-related tasks. Minimal costs were recorded for medicines. Usage of low vision services was commonplace, reflecting the cost-free availability of low vision rehabilitation and support services for children and youths in Australia. CONCLUSIONS: This exploratory study draws attention to the complexity of factors that need to be considered when calculating the personal costs of vision impairment. Cross case comparisons showed that some personal costs were recurrent, others sporadic or once-off. By highlighting the role that age, onset and duration of vision loss, life/educational stage and lifestyle played in differentiating costs between case study participants, these diaries represent important formative work that can guide future research in this area.

Access and utilization of a new low-vision rehabilitation service.

BACKGROUND: A new low-vision service linking a public hospital and a non-governmental organization was trialled in Melbourne, Australia. The factors associated with service use were investigated. METHODS: A survey was conducted with patients who used the service, those who accepted referrals but failed to attend and those who refused a referral. Hospital and non-governmental organization representatives were also interviewed. RESULTS: Ninety-eight eligible vision impaired people who were referred to the new service were recruited. Less than half (49%) followed through with their referral and attended the service. Proximity and convenience were listed as the main facilitators to service use while issues relating to transport, needing an accompanying person, lack of information about the service and poor health were the main barriers. More than a third of the non-compliant and referral refusers spoke a language other than English. Sixty-three per cent of all participants had not previously used low-vision services. Of the two main eye conditions, 81% of referred age-related macular degeneration participants (n = 26) attended the service, but only 32% of those with diabetic retinopathy (n = 31) did so. CONCLUSION: As more than 60% of participants in each of the three groups had no prior use of low-vision services, clearly current models of care are not reaching many who could benefit from such services. This suggests that higher rates of referral are warranted. However, given that substantially more were referred than attended, referral alone is obviously not the answer. Access and attitudinal barriers also need to be addressed.