Trends and health economic aspects of service delivery of glaucoma

Glaucoma describes a group of optic neuropathies characterised by progressive irreversible loss of visual function. Within this thesis, a health economic model was constructed to map service provision from diagnosis considering two competing strategies: the current practice of annual visual field (VF) monitoring against the proposed guidelines of performing 6 VFs in the first two years. The constructed model found the proposed practice to be cost effective at a willingness to pay ceiling ratio of £30,000 per quality adjusted life year (QALY), identifying an incremental cost effectiveness ratio (ICER) of £21,679. The findings of the model however were potentially sensitive to the modelled infrastructure improvement costs required to undertake the proposed guidelines and a costing study to more accurately ascertain these costs was recommended. Following this study, statistical analysis of 473,252 VFs was undertaken to investigate trends in initial identification and progression rates whilst also narrowing their parameters within the health economic model. Consequently, the average level of glaucomatous vision loss at diagnosis was found to be improving by 0.11 dB per year on average whilst proportions of patients with ‘advanced’ loss at diagnosis fell significantly from 30% to 21%. Average progression rates were found to have fallen from -0.11 dB per year to -0.06 dB per year whilst average rates of loss in older eyes (>70 years) were found to progress faster than in younger eyes (<60 years). Furthermore, testing frequency was found not to vary by visual impairment risk factors. The constructed health economic model was subsequently updated to incorporate the more narrowly defined parameter distributions whilst also being re-specified to incorporate societal costs of visual impairment to count the true costs of the disease. This resulted in an improved ICER of £11,382. In conclusion, it is likely that implementing the proposed guidelines of 6 VFs in the first two years is more cost-effective than annual monitoring. This argument is further reinforced once societal costs are accounted for however a scoping study to examine the required costs of improving the glaucoma monitoring infrastructure is required

Cases of advanced visual field loss at referral to glaucoma clinics - more men than women?

Purpose In many medical conditions ‘late presentation’ of disease is more of a problem for men than women. Risk of sight loss from glaucoma is certainly greater in those detected with advanced disease. We performed a retrospective study to test the hypothesis that men are more likely than women to have advanced visual field loss at referral to glaucoma clinics. Methods We used 152 918 Humphrey visual fields from 32 147 patients from three regionally different hospitals in England; no other clinical data were made available apart from patient's age, sex and examination dates. The study population was defined as patients with measureable visual field loss in at least one eye at referral to glaucoma clinics. Cases of advanced visual field loss as defined by the Enhanced Glaucoma Severity Staging method at the first visit to secondary care were used as a proxy measure for late presentation of glaucoma. Age-adjusted relative risk (RR) was calculated as the ratio of the proportion of men to women with this proxy measure. Results Median (interquartile range) age and MD (worse eye) for 3733 men and 4264 women was 72 (63, 79) and 74 (64, 81) years and −6.4 (−11.7, −3.8) and −6.3 (−11.0, −3.8) dB respectively. Overall proportion of patients with advanced visual field loss at referral to glaucoma clinics was slightly higher in men (25.0%) than in women (22.3%); this difference was statistically significant (p < 0.01). Overall age-standardised RR was statistically significant (1.16; p < 0.001); a person with late presentation of glaucoma is 16% (95% confidence interval: 7–25%) more likely to be a man than a woman. Conclusions A large number of patients with glaucomatous visual field defects are estimated to have advanced loss in at least one eye on referral to secondary care in England; risk for men more likely presenting with late disease is slightly greater than for women

The complex relationship between household income of family caregivers, access to palliative care services and place of death : A national household population survey

BACKGROUND: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. AIM: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care. DESIGN: A cross-sectional community household population survey. SETTING AND PARTICIPANTS: Respondents to the Household Survey for England. RESULTS: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related ( p < 0.001). Palliative care services reduced the proportion of deaths in hospital ( p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not ( p < 0.001). Respondents' income was not associated with palliative care access ( p = 0.233). Overall, respondents' income and home death were not related ( p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home ( p = 0.069). CONCLUSION: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life

More frequent, more costly? Health economic modelling aspects of monitoring glaucoma patients in England

BACKGROUND: Chronic open angle glaucoma (COAG) is an age-related eye disease causing irreversible loss of visual field (VF). Health service delivery for COAG is challenging given the large number of diagnosed patients requiring lifelong periodic monitoring by hospital eye services. Yet frequent examination better determines disease worsening and speed of VF loss under treatment. We examine the cost-effectiveness of increasing frequency of VF examinations during follow-up using a health economic model. METHODS: Two different VF monitoring schemes defined as current practice (annual VF testing) and proposed practice (three VF tests per year in the first 2 years after diagnosis) were examined. A purpose written health economic Markov model is used to test the hypothesis that cost effectiveness improves by implementing proposed practice on groups of patients stratified by age and severity of COAG. Further, a new component of the model, estimating costs of visual impairment, was added. Results were derived from a simulated cohort of 10000 patients with quality-adjusted life years (QALYs) and incremental cost-effectiveness ratios (ICERs) used as main outcome measures. RESULTS: An ICER of £21,392 per QALY was derived for proposed practice improving to a value of £11,382 once savings for prevented visual impairment was added to the model. Proposed practice was more cost-effective in younger patients. Proposed practice for patients with advanced disease at diagnosis generated ICERs > £60,000 per QALY; these cases would likely be on the most intensive treatment pathway making clinical information on speed of VF loss redundant. Sensitivity analysis indicated results to be robust in relation to hypothetical willingness to pay threshold identified by national guidelines, although greatest uncertainty was allied to estimates of implementation and visual impairment costs. CONCLUSION: Increasing VF monitoring at the earliest stages of follow-up for COAG appears to be cost-effective depending on reasonable assumptions about implementation costs. Our health economic model highlights benefits of stratifying patients to more or less monitoring based on age and stage of disease at diagnosis; a prospective study is needed to prove these findings. Further, this works highlights gaps in knowledge about long term costs of visual impairment

How does the side-effect information in patient information leaflets influence peoples’ side-effect expectations? A cross-sectional national survey of 18- to 65-year-olds in England

Objectives To establish how the terms recommended by the European Commission to describe side‐effect risk in patient information leaflets (PILs) influences expectations of side‐effects and to identify factors associated with these side‐effect expectations. Design A cross‐sectional online survey was carried out by a market research company. Setting Data were collected in England between 18th March and 1st April 2016. Participants A total of 1003 adults aged between 18 and 65. Main outcome measures: Self‐reported expectation that the described side‐effects would affect participants if they took the medicine, measured on a likelihood scale from 1 (very unlikely) to 5 (very likely). Results Participants formed high expectations of side‐effects for “very common” and “common” side‐effects, with 51.9% and 45.0% of participants rating these as “very likely” or “likely” to happen to them, respectively. This fell to 8.1% for “uncommon,” 5.8% for “rare” and 4.1% for “very rare.” For each descriptor, higher expectations of side‐effects were more associated with women or being from an ethnic minority, or having less education, a household illness, high perceived sensitivity to medicines or negative beliefs about medicines. Discussion The current use of verbal descriptors to communicate side‐effect risk in PILs leads to high side‐effect expectations. These expectations could contribute to nocebo‐induced medication side‐effects experienced by patients. Additional work is required to identify ways to improve the way risk information is conveyed in PILs

Taking the strain? Impact of glaucoma on patients' informal caregivers

Purpose: To estimate informal caregiver (ICG) strain in people from a glaucoma clinic. Methods: Patients with glaucoma were consecutively identified from a single clinic in England for a cross-sectional postal survey. The sample was deliberately enriched with a number of patients designated as having advanced glaucoma (visual field [VF] mean deviation worse than -12 dB in both eyes). Patients were asked to identify an ICG who recorded a Modified Caregiver Strain Index (MCSI), a validated 13 item instrument scored on a scale of 0-26. Previous research has indicated mean MCSI to be >10 in Multiple Sclerosis and Parkinson’s disease. All participants gave a self-reported measure of general health (EQ5D). Results: Responses from 105 patients (43% of those invited) were analysed; only 38 of the 105 named an ICG. Mean (95% confidence interval [CI]) MCSI was 2.4 (1.3, 3.6) and only three ICGs recorded a MCSI > 7. The percentage of patients with an ICG was much higher in patients with advanced VF loss (82%; 9/11) when compared to those with non-advanced VF loss (31%; 29/94; p=0.001). Mean (standard deviation) MCSI was considerably inflated in the advanced patients (5.6 [4.9] vs 1.5 [2.2] for non-advanced; p=0.040). Worsening VF and poorer self-reported general health (EQ5D) of the patient were associated with worsening MCSI. Conclusion: ICG strain, as measured by MCSI, for patients with non-advanced glaucoma is negligible, compared to other chronic disease. ICG strain increases moderately with worsening VFs but this could be partly explained by worse general health in our sample of patients

Illness perceptions in people newly-diagnosed with glaucoma and ocular hypertension

Background/aims: To determine whether self-reported illness perceptions in newly-diagnosed patients with primary open-angle glaucoma (POAG) and ocular hypertension (OHT) are more negative compared to peers who have lived with their diagnosis for more than two years. Methods: A cross-sectional study of 58 newly-diagnosed patients with POAG and OHT recruited at their first clinic visit. Electronic patient records were used to identify similar patients (n=58, related by age and severity of visual field loss) who had their diagnosis for > 2 years. All participants completed the Brief Illness Perception Questionnaire (BIPQ), EQ5D general health measure and Type D Personality Scale (DS14). Results: Average BIPQ scores were similar for people newly-diagnosed with POAG and POAG diagnosed > 2 years, and were no different to newly-diagnosed OHT and OHT diagnosed > 2 years POAG (p=0.46). An analysis correcting for personality type (DS14) and general health (EQ5D) indicated newly-diagnosed patients with POAG to have marginally better illness perceptions on individual BIPQ items quantifying impact on life in general, experience of symptoms and ‘understanding’ of their condition (all p2 years understood better their condition to be long-term (p<0.01). Conclusions: Some illness perceptions differed between newly-diagnosed people and patients living with their diagnosis for >2 years. Illness perception for people with manifest glaucoma and at risk of glaucoma (OHT) were similar; the latter might benefit from an intervention at diagnosis that highlights the better prognosis for OHT compared to POAG