Gwyneth Rees

Supporting informality: team working and integrated care records

This paper reports findings from an ethnographic study of the work of Adult and Care of the Elderly Community Mental Health Teams in the context of the deployment of an Electronic Medical Record. Our findings highlight the importance of informal discussions and provisional judgments as part of the process by which teams achieve consensual clinical management decisions over time. We show how paper-based documentation supports this collaborative work by affording both the revision of preliminary clinical management options and the accretion of contributions by team members with different clinical perspectives and expertise. Finally, we consider the implications both for teamwork and the Integrated Care Record (ICR) as clinical documentation becomes increasingly held and distributed electronically.

A family history of breast cancer: women's experiences from a theoretical perspective

Individuals at increased risk of developing breast cancer due to their family history of the disease face a number of uncertainties. Personal cancer risk estimates are imprecise and current methods for early detection or prevention are not 100% effective. It is therefore not surprising that adverse psychosocial outcomes have been described within this population. Research attempting to predict the incidence of distress and dysfunction in individuals at increased risk of cancer has been largely a-theoretical and has overlooked a number of potentially important predictive variables. In particular, the influence of personal experience of cancer through involvement with affected relatives has been neglected. There are strong theoretical grounds for hypothesising that dimensions of personal experience may influence response to cancer risk. This paper discusses the potential impact of personal experience on risk perception, illness representations and decision-making. Systematic research in this area may improve predictions of outcome of cancer genetic counselling and inform the clinical process.

The Psychometric Validity of the NEI VFQ-25 for Use in a Low-Vision Population

PURPOSE To determine the psychometric validity of the National Eye Institute-Visual Function Questionnaire (NEI VFQ-25) and its subscale structure for use in people with low vision. METHODS Two hundred thirty-two participants completed the NEI VFQ-25. Rasch analysis was used to test the psychometric performance of the questionnaire and each subscale. Factor models were hypothesized and tested with confirmatory factor analysis (CFA) and subsequently validated with Rasch analysis. RESULTS For the overall scale, two rating scales had to be dichotomized and three misfitting items removed to improve fit to the Rasch model. There was evidence of multidimensionality, indicating that the scale would benefit from scale splitting. For the NEI VFQ-25 subscale structure, six of the original 12 subscales could not fit the Rasch model because of item insufficiency (fewer than two items) and the remaining six displayed poor item fit characteristics indicating that the NEI VFQ-25 does not have a viable subscale structure. CFA supported a two-factor model with visual functioning (10 items) and socioemotional (9 items) scales. Most goodness-of-fit statistics were within the recommended range of values. The factor loadings of items on their respective scales were statistically significant (P < 0.001) and ranged between 0.59 and 0.84. The two scales individually fitted the Rasch model and were found to be unidimensional with adequate psychometric characteristics. CONCLUSIONS The native NEI VFQ-25 is a better performing instrument when split into visual functioning and socioemotional scales. These scales possess valid parameters for assessment of the impact of low vision in this population.

Illness perceptions and distress in women at increased risk of breast cancer

Variation in the levels of distress in women at increased risk of breast cancer has been reported, yet there is limited understanding of the factors that are associated with heightened distress in this population. This study took a theoretical approach using Leventhals Self Regulatory Model (SRM) to understand variation in distress levels. The study examined the associations between perceptions of breast cancer and distress in women at increased risk of breast cancer, and a comparison sample with no experience of the disease in their social environment. Questionnaire data from 117 women at increased risk of breast cancer and 100 comparison women were analysed. Women at increased risk of breast cancer showed comparable levels of general distress but significantly higher levels of cancer specific distress than the comparison group. There were few differences in illness perceptions between the samples, although a number of cognitive perceptions of breast cancer were related to both general and cancer specific distress in the increased risk sample, but not in the comparison sample. The results suggest that the SRM provides a useful framework to explore the psychological response to genetic risk. Further research is required in this population to examine illness perceptions in more detail, validate quantitative measures of illness perceptions, and examine interactions between risk perception and the SRM constructs.

Are obesity and anthropometry risk factors for diabetic retinopathy? The diabetes management project.

PURPOSE To investigate the relationship between anthropometric parameters and diabetic retinopathy (DR) in adults with diabetes. METHODS Five hundred participants with diabetes were recruited prospectively from ophthalmology clinics in Melbourne, Australia. Each underwent an eye examination, anthropometric measurements, and standardized interview-administered questionnaires, and fasting blood glucose and serum lipids were analyzed. Two-field fundus photographs were taken and graded for DR. Height; weight; body mass index (BMI); waist, hip, neck, and head circumferences; and skinfold measurements were recorded. RESULTS A total of 492 patients (325 men, 66.1%) aged between 26 and 90 years (median, 65) were included in the analysis: 171 (34.8%), 187 (38.0%), and 134 (27.2%) with no DR, nonproliferative DR (NPDR), and proliferative DR (PDR), respectively. After multiple adjustments, higher BMI (odds ratio [OR], 1.06; 95% confidence interval [CI],1.01-1.11; P = 0.02) was significantly associated with any DR. Obese people were 6.5 times more likely to have PDR than were those with normal weight (OR, 6.52; 95% CI, 1.49-28.6; P = 0.013). Neck circumference (OR, 1.05; 95% CI, 1.00-1.10; P = 0.03) and waist circumference (OR, 1.12; 95% CI, 1.03-1.22; P = 0.01) were significantly associated with any DR. BMI (OR, 1.04; 95% CI, 1.00-1.08; P = 0.04) and neck circumference (OR, 1.04 95% CI, 1.01-1.08; P = 0.04) were also positively associated with increasing severity levels of DR. CONCLUSIONS Persons with diabetes with higher BMI and larger neck circumference are more likely to have DR and more severe stages of DR. These data suggest that obesity is an independent risk factor for DR.

Vision-Specific Distress and Depressive Symptoms in People with Vision Impairment

PURPOSE To determine the unique contribution of vision-specific distress in predicting depressive symptoms in people with vision impairment attending a tertiary eye care clinic. METHODS In this cross-sectional study, interview-administered surveys were conducted with 143 adult patients who had presenting visual acuity <0.3 logMAR. Depressive symptoms were assessed with the Patient Health Questionnaire-9 and vision-specific distress was assessed with the Impact of Vision Impairment (IVI) Questionnaire emotional well-being subscale. In addition, level of restriction of participation in common daily activities due to vision impairment was assessed with the IVI and measures of general physical health and social support were included. RESULTS Twenty-one (14.7%) of 143 participants reported clinically significant depressive symptoms and an additional 27.3% (n = 39) had mild depressive symptoms. Vision-specific distress was the strongest unique predictor of depressive symptoms (beta = 0.37, P < 0.001), with physical health (beta = -0.22, P < 0.01), age (beta = -0.18, P < 0.05), and experience of a negative life event (beta = 0.15, P < 0.05) also contributing significantly to depressive symptoms. Results also indicated that vision-specific distress mediates the impact of participation restriction due to vision impairment on depressive symptoms. CONCLUSIONS An assessment of vision-specific distress may be a useful tool with which to identify those at risk of depression or in need of early intervention in eye care or rehabilitation settings. Depression treatment approaches or depression prevention strategies for people with vision impairment may benefit from a focus on vision-specific distress.

Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups

Research to date has mainly focused on the short‐term psychological impact of genetic risk counselling for breast cancer. This study aimed to explore the long‐term consequences for women of being informed about an increased risk of breast cancer in terms of: the effect on their everyday lives, their coping strategies and their unmet needs in terms of the current service. The participants were 25 women with a family history of breast cancer who had received genetic risk counselling and had consequently been receiving clinical surveillance for at least 2 years. They took part in one of seven telephone focus groups and subsequently completed a feedback questionnaire. Transcripts of the focus groups were qualitatively analysed by three independent researchers with inter‐rater agreement between pairs of raters ranging from Kappa=0.61–0.79. Six key issues emerged from the data, which provide an important insight into the long‐term consequences of living with an increased risk of breast cancer concerning: (1) psychological adaptation, (2) behavioural adaptation, (3) family issues, (4) clinical surveillance, (5) provision of information, and (6) peer support. These findings, together with the quantitative results of the feedback questionnaire, have clinical implications that require further investigation in larger scale quantitative research. Copyright

Screening participation in individuals with a family history of colorectal cancer: a review

Literature regarding screening behaviour in individuals with a family history of colorectal cancer was reviewed, in order to determine the prevalence of screening in this population and identify factors associated with screening participation. Four electronic databases were searched from 1994. Thirty papers met the inclusion criteria, including 3 community surveys, 13 studies on first-degree relatives of colorectal cancer patients, and 14 studies on genetic services for colorectal cancer risk assessment. Individuals with a family history of colorectal cancer, who have not received risk assessment, frequently have never had any form of screening for colorectal cancer. Uptake of endoscopic screening when offered to individuals identified as being at increased risk was generally high (often >60% participation). Having a medical recommendation to screen, a stronger family history and perceiving fewer barriers to screening were identified as predictors of screening behaviour. Existing data suggest that use of screening tests in individuals with a family history of colorectal cancer is variable, and our understanding of factors associated with screening behaviour is limited. A number of methodological problems in research to date were identified, and further research is needed in order to inform interventions to support sustained screening participation in this population.

The impact of diabetic retinopathy: understanding the patient's perspective

Understanding the impact of a condition from the patients perspective is important, and different types of patient-reported outcomes or instruments are available to help with this. This review article summarises the current evidence on the impact of diabetic retinopathy (DR) and its associated vision impairment on patient-reported outcomes. We have included research that has used a range of outcome measures to assess the impact of DR on generic health-related quality of life, utility, vision-functioning and vision-specific quality of life. This review also offers clarification on frequently misused psychometric terminologies to help clinicians and researchers better understand the literature associated with patient-reported outcome research. Overall, the evidence suggests that DR, particularly in its vision-threatening stages, has a substantial, negative impact on the patient. However, our understanding of the impact of DR is currently restricted due to limitations inherent in currently available patient-reported outcome measures. We conclude by discussing potential directions for future research in this area, such as item banking and computer adaptive testing.

Detection of depression in patients with low vision

Purpose. Depression is common in people with vision impairment and further reduces levels of functioning independent of vision loss. However, depression most often remains undetected and untreated this group. Eye health professionals (EHPs) (ophthalmic nurses, ophthalmologists, optometrists, and orthoptists) and rehabilitation workers (RWs) may be able to play a role in detecting depression. This study aimed to identify current practice and investigate factors associated with depression management strategies. Methods. A self-administered cross-sectional survey of EHPs and RWs assessed current practice including confidence in working with depressed people with vision impairment; barriers to recognition, assessment, and management of depression; beliefs about the consequences, duration, and efficacy of treatment for depression in individuals with vision impariment. Results. Ninety-four participants aged 23 to 69 years took part. Thirty-seven participants (39.8%) stated that they attempted to identify depression as part of patient management, with RWs significantly more likely to do so (n = 17, 60.7%) than EHPs (n = 20, 30.8%; p = 0.007). Intention to identify depression was not associated with sociodemographic factors, professional experience in eye care services, or the length and number of patient consultations, but a significant relationship was found for confidence, barriers, and beliefs about depression (p < 0.05). No consistent depression management strategy emerged and a range of barriers were highlighted. Conclusions. Training programs are needed to provide EHPs and RWs with the skills and resources to address depression in people with vision loss under their care and to support the development of procedures by which concerns about depression can be identified objectively, documented, and included as part of a referral to appropriate services.