XThe psychosocial impact of living with an ocular prosthesis

Objective: Many patients are satisfied with their ocular prosthesis, but some describe problems with social interactions, body image and self-esteem. Although both clinical practice and research suggest that the severity of a disfiguring condition does not predict distress, there has been little research with patients living with an ocular prosthesis. The objective was to explore the psychological impact of living with an artificial eye or cosmetic shell and determine the relationship between psychological well-being and clinical and psychosocial factors. Methods: A cross-sectional study between March and September 2008 at the ocular prosthesis clinic of Moorfields Eye Hospital, UK. The primary outcome measures were mood as measured by the Hospital Anxiety and Depression Scale (HADS) and appearance-related social anxiety and social avoidance, as measured by the Derriford Appearance Scale (DAS24). Results: Mean scores on the HADS and DAS24 were within normal range, but a considerable proportion of participants were experiencing significant levels of distress. Psychosocial adjustment was unrelated to most clinical and demographic variables, but was associated with a series of cognitive processes. Conclusions: Psychological variables, rather than clinical or demographic factors, are associated with how a patient adjusts to wearing an ocular prosthesis. Such factors might be amenable to change through psychosocial intervention

What are the psychosocial outcomes of treatment for thyroid eye disease? A systematic review

Background: Thyroid eye disease (TED) causes a number of esthetic and visual problems and its treatment requires close clinical assessment, often for several years. There is evidence to suggest that clinical factors are poor indicators of patient-reported outcomes after treatments that aim to improve appearance, vision, or both. Psychosocial factors can impact on both adjustment to living with TED and also patients’ perceptions of their improvements after treatment. There has been growing recognition that it is essential to evaluate treatment efficacy in terms of psychosocial outcomes but, to date, there has been no review that has systematically evaluated psychosocial outcomes following a variety of treatments for TED. Summary: Fifteen studies were included in the review and 6 were randomized controlled trials (RCTs). The studies varied greatly in methodological rigor; whilst major treatments such as surgery do improve quality of life outcomes, other non-invasive treatments such as intravenous steroids can have a similar impact and show long-term benefits. Only 3 studies reviewed orbital decompressive surgery which showed better psychosocial outcomes than other types of surgery. Conclusions: The effect of some treatments remains unclear due to poor methodology and poor reporting of results. Clinicians need to be aware when planning rehabilitative treatments such as surgery the influence of psychosocial factors on quality of life outcomes and the lack of a relationship with clinical factors such as disease severity

Factors associated with quality of life and mood in adults with strabismus

Background/Aims To explore the factors associated with the mood and quality of life (QoL) of patients with strabismus due to undergo realignment surgery. Methods A cross-sectional study was undertaken with adult patients. Along with demographic, clinical and psychosocial process variables, the Hospital Anxiety and Depression Scale and AS-20 QoL measures were administered. Regression models were used to identify the factors associated with QoL and mood. Results Of the 220 participants, 11% were experiencing clinical levels of depression, and 24% clinical anxiety. This is in line with other forms of facial disfigurement but higher than other chronic diseases. Although mood and QoL were associated with age and diplopia, it was beliefs and cognitions which were more consistently associated with well-being. This included feelings of social anxiety and avoidance, a belief that strabismus has negative consequences, poor understanding of strabismus, social support, fear of negative evaluation and the perceived visibility of their condition. Conclusions Psychosocial rather than clinical characteristics were identified as determinants of wellbeing in this population. It is important for clinicians planning surgery to be aware of these factors which could influence outcomes. Longitudinal studies need to be conducted to explore the direction of causality before interventions to improve well-being are developed and evaluated

Barriers to effective diabetes management – a survey of people with severe mental illness

Background: People with severe mental illnesses (SMI) such as schizophrenia and bipolar disorder have an increased risk of developing type 2 diabetes and have poorer health outcomes than those with diabetes alone. To maintain good diabetes control, people with diabetes are advised to engage in several self-management behaviours. The aim of this study was to identify barriers or enablers of diabetes self-management experienced by people with SMI. Methods: Adults with type 2 diabetes and SMI were recruited through UK National Health Service organisations and mental health and diabetes charities. Participants completed an anonymous survey consisting of: Summary of Diabetes Self-Care Activities (SDSCA); CORE-10 measure of psychological distress; a measure of barriers and enablers of diabetes self-management based on the Theoretical Domains Framework; Diabetes UK care survey on receipt of 14 essential aspects of diabetes healthcare. To identify the strongest explanatory variables of SDSCA outcomes, significant variables (p < .05) identified from univariate analyses were entered into multiple regressions. Results: Most of the seventy-seven participants had bipolar disorder (42%) or schizophrenia (36%). They received a mean of 7.6 (SD 3.0) diabetes healthcare essentials. Only 28.6% had developed a diabetes care plan with their health professional and only 40% reported receiving specialist psychological support. Engagement in self-management activities was variable. Participants reported taking medication on 6.1 (SD 2.0) days in the previous week but other behaviours were less frequent: general diet 4.1 (2.3) days; specific diet 3.6 (1.8) days, taking exercise 2.4 (2.1) days and checking feet on 1.7 (1.8) days. Smoking prevalence was 44%. Participants reported finding regular exercise and following a healthy diet particularly difficult. Factors associated with diabetes self22 management included: the level of diabetes healthcare and support received; emotional wellbeing; priority given to diabetes; perceived ability to manage diabetes or establish a routine to do so; and perceived consequences of diabetes self-management. Conclusions: Several aspects of diabetes healthcare and self-management are suboptimal in people with SMI. There is a need to improve diabetes self-management support for this population by integrating diabetes action plans into care planning and providing adequate psychological support to help people with SMI manage their diabetes

The impact of strabismus on quality of life in adults with and without diplopia: a systematic review

Strabismus affects approximately 4% of the adult population and can cause substantial physical disturbance and changes to appearance. This article aims to examine the impact of strabismus in adults both with and without diplopia, focusing primarily on quality of life (QoL). We highlight the value of measuring QoL, assess the ways in which it can be measured, and the impact the disease, diplopia, and surgery have on the patient. QoL differs for strabismus patients based on their diplopia status. Patients with diplopia tend to have more concerns relating to functional QoL, whereas patients without diplopia have primarily psychosocial concerns. Two diplopia-specific questionnaires have been designed to assess QoL and the perceived severity of symptoms. Further research is needed to identify the variables which influence QoL so that appropriate support can be given to all patients with strabismus to improve their QoL

Effectiveness and cost-effectiveness of a patient-initiated botulinum toxin treatment model for blepharospasm and hemifacial spasm: a study protocol for a randomised controlled trial

Background Blepharospasm and hemifacial spasm are debilitating conditions that significantly impact on patient quality of life. Cyclical treatment with botulinum toxin injections offers temporary relief, but the duration of treatment efficacy is variable. The standard model of patient care defines routine fixed-time based scheduled treatment cycles which may lead to unnecessarily frequent treatment for some patients and experience of distressing symptoms in others, if symptoms return before the scheduled follow-up period. Methods/Design A randomised controlled trial will compare a patient-initiated model of care, where patients determine botulinum toxin treatment timing, to the standard model of care in which care is scheduled by the clinical team. A sample of 266 patients with blepharospasm or hemifacial spasm will be recruited from Moorfields Eye Hospital (MEH), London. The trial will be accompanied by a mixed methods evaluation of acceptability of the new service. Patients who meet eligibility criteria will be assessed at baseline and those in the intervention group will be provided instructions on how to book their own treatment appointments. Patients in both groups will be followed up 3 and 9 months into the trial and all patients will be returned to usual care after 9 months to meet safety protocols. Primary outcome measures include disease severity (questionnaire), functional disability (questionnaire) and patient satisfaction with care (questionnaire). Secondary outcomes include disease-specific quality of life (questionnaire), mood (questionnaire), illness and treatment perceptions (questionnaire and semi-structured interviews), economic impact (questionnaire) and acceptability (questionnaire and semi-structured interviews). Discussion This trial will assess the effectiveness and cost-effectiveness of a patient-led care model for botulinum toxin therapy. If the new model is shown to be effective in reducing distress and disability in these populations and is found to be acceptable to patients, whilst being cost-effective, this will have significant implications for service organisation across the NHS. Trial registration UK Clinical Research Network (UKCRN) Portfolio 18660. Clinicaltrials.gov ID NCT102577224 (registered 29th October 2015

The impact of self-monitoring in chronic illness on healthcare utilisation: a systematic review of reviews

Background: Self-management interventions have been found to reduce healthcare utilisation in people with long-term conditions, but further work is needed to identify which components of these interventions are most effective. Self-monitoring is one such component and is associated with significant clinical benefits. The aim of this systematic review of reviews is to assess the impact of self-monitoring interventions on healthcare utilisation across a range of chronic illnesses. Methods: An overview of published systematic reviews and meta-analyses. Multiple databases were searched (MEDLINE, CINAHL, PsycINFO, EMBASE, AMED, EBM and HMIC) along with the reference lists of included reviews. A narrative synthesis was performed, accompanied by calculation of the Corrected Cover Area to understand the impact of overlapping primary research papers. Results: A total of 17 systematic reviews and meta-analyses across three chronic conditions, heart failure, hypertension and chronic obstructive pulmonary disease, were included. Self-monitoring was associated with significant reductions in hospitalisation and re-admissions to hospital. Conclusions: Self-monitoring has the potential to reduce the pressure placed on secondary care services, but this may lead to increase in services elsewhere in the system. Further work is needed to determine how these findings affect healthcare costs