Analysis of stroke patients' and carers' reading ability and the content and design of written materials: Recommendations for improving written stroke information

Objective: This study (a) evaluated the reading ability of patients following stroke and their carers and the reading level and content and design characteristics of the written information provided to them, (b) explored the influence of sociodemographic and clinical characteristics on patients' reading ability, and (c) described an education package that provides well-designed information tailored to patients' and carers' informational needs. Methods: Fifty-seven patients and 12 carers were interviewed about their informational needs in an acute stroke unit. Their reading ability was assessed using the Rapid Estimate of Adult Literacy in Medicine (REALM). The written information provided to them in the acute stroke unit was analysed using the SMOG readability formula and the Suitability Assessment of Materials (SAM). Results: Thirteen (22.8%) patients and 5 (41.7%) carers had received written stroke information. The mean reading level of materials analysed was 11th grade while patients read at a mean of 7-8th grade. Most materials (89%) scored as only adequate in content and design. Patients with combined aphasia read significantly lower (4-6th grade) than other patients (p = 0.001). Conclusion: Only a small proportion of patients and carers received written materials about stroke and the readability level and content and design characteristics of most materials required improvement. Practice implications: When developing and distributing written materials about stroke, health professionals should consider the reading ability and informational needs of the recipients, and the reading level and content and design characteristics of the written materials. A computer system can be used to generate written materials tailored to the informational needs and literacy skills of patients and carers. (c) 2005 Elsevier Ireland Ltd. All rights reserved.

Producing computer-generated tailored written information for stroke patients and their carers: System development and preliminary evaluation

Purpose: The aim of this project was to design and evaluate a system that would produce tailored information for stroke patients and their carers, customised according to their informational needs, and facilitate communication between the patient and, health professional. Method: A human factors development approach was used to develop a computer system, which dynamically compiles stroke education booklets for patients and carers. Patients and carers are able to select the topics about which they wish to receive information, the amount of information they want, and the font size of the printed booklet. The system is designed so that the health professional interacts with it, thereby providing opportunities for communication between the health professional and patient/carer at a number of points in time. Results: Preliminary evaluation of the system by health professionals, patients and carers was positive. A randomised controlled trial that examines the effect of the system on patient and carer outcomes is underway. (C) 2004 Elsevier Ireland Ltd. All rights reserved.

Burden of care and general health in families of patients with schizophrenia

Background De-institutionalization of psychiatric patients has led to a greater emphasis on family management in the community, and family members are often overwhelmed by the demands that caring for a patient with schizophrenia involves. Most studies of family burden in schizophrenia have taken place in developed countries. The current study examined family burden and its correlates in a regional area of a medium income country in South America. Method Sixty-five relatives of patients with schizophrenia who were attending a public mental health out-patient service in the province of Arica, Chile, were assessed on Spanish versions of the Zarit Caregiver Burden Scale and SF-36 Health Survey (SF-36). Results Average levels of burden were very high, particularly for mothers, carers with less education, carers of younger patients and carers of patients with more hospitalisations in the previous 3 years. Kinship and number of recent hospitalisations retained unique predictive variance in a multiple regression. Burden was the strongest predictor of SF-36 subscales, and the prediction from burden remained significant after entry of other potential predictors. Conclusions In common with families in developed countries, family members of schizophrenia patients in regional Chile reported high levels of burden and related functional and health impact. The study highlighted the support needs of carers in contexts with high rates of poverty and limited health and community resources.

Supportive care needs of people with brain tumours and their carers

Goals of work: The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Materials and methods: Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Main results: Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Conclusions: Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.

Association between clinician factors and a patient's wish to hasten death: Terminally ill cancer patients and their doctors

This study investigated the clinical factors associated with a wish to hasten death among patients with advanced cancer receiving palliative care, with a focus on the role of clinician-related factors. Patients were grouped into high- and low-scoring groups on the basis of their wish to hasten death; doctor-patient pairs were formed. Questionnaire data collected from patients and their treating doctors were subjected to multivariate analysis. Significant predictors of a high wish to hasten death in terminally ill patients from among treating clinicians included the clinician's perception of the patient's lower optimism and greater emotional suffering, the patient indicating a wish to hasten death, the doctor willing to assist the patient in hastening death (if requested and legal), and the doctor reporting less training in psychotherapy. When these variables were combined with patient factors identified in a previous study, the model significantly predicted a wish to hasten death with the following variables patient factors: a higher perceived burden on others, higher depressive symptom scores, and lower family cohesion; physician factors: the doctor willing to assist the patient in hastening death (if requested and legal), the doctor's perception of lower levels of optimism and greater emotional distress in the patient, and the doctor having less training in psychotherapy; and the setting of care: recent admission to a hospice. The findings support the multifactorial influences on the wish to hasten death and suggest that the role of the clinician is a vital context within which the wish to hasten death should be considered.

Using patients' and rheumatologists' opinions to specify a short form of the WOMAC function subscale

Background: The WOMAC ( Western Ontario and McMaster Universities) function subscale is widely used in clinical trials of hip and knee osteoarthritis. Reducing the number of items of the subscale would enhance efficiency and compliance, particularly for use in clinical practice applications. Objective: To develop a short form of the WOMAC function subscale based on patients' and experts' opinions ( WOMAC function short form). Methods: WOMAC function subscale data ( Likert version) were obtained from 1218 outpatients with painful hip or knee osteoarthritis. These patients and their rheumatologists selected the five items that they considered most in need of improvement. The rheumatologists were asked to select the five items for which patients in general are the most impaired. Items that were least important to patients and experts, those with a high proportion of missing data, and those with a response distribution showing a floor or ceiling response were excluded, along with one of a pair of items with a correlation coefficient >0.75. Results: The WOMAC function short form included items 1, 2, 3, 6, 7, 8, 9, and 15 of the long form. The short form did not differ substantially from the long form in responsiveness ( standardised response mean of 0.84 v 0.80). Conclusions: A short form of the WOMAC function subscale was developed according to the views of patients and rheumatologists, based on the responses of 1218 patients and 399 rheumatologists. The clinical relevance and applicability of this WOMAC function subscale short form require further evaluation.

Caregiver burden, time spent caring and health status in the first 12 months following stroke

Objective: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. Methods: Patients and carers prospectively interviewed 6 (n = 71) and 12 (n = 57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. Results: Carers showed considerable burden at 6 and 12 months. Carers spent 4.6 and 3.6 hours per day assisting patients with daily activities at 6 and 12 months, respectively. Improved patient motor and cognitive function were associated with reductions of up to 20 minutes per day in time spent in daily activities. Better patient mental health and cognitive function were associated with better carer mental health. Conclusions: Potentially modifiable factors such as these may be able to be targeted by caregiver training, support and education programmes and outpatient therapy for patients.

Distribution of 19 major virulence genes in Legionella pneumophila serogroup 1 isolates from patients and water in Queensland, Australia

The distribution of 19 major virulence genes and the presence of plasmids were surveyed in 141 Legionella pneumophila serogroup (SG) 1 isolates from patients and water in Queensland, Australia. The results showed that 16 of the virulence genes examined were present in all isolates, suggesting that they are life-essential genes for isolates in the environment and host cells. The 65 kb pathogenicity island identified originally in strain Philadelphia-1(T) was detected more frequently in isolates from water (44.2 %) than in those from patients (2.7 %), indicating that the 65 kb DNA fragment may aid the survival of L. pneumophila in the sampled environment. However, the low frequency of the 65 kb fragment in isolates from patients suggests that the pathogenicity island may not be necessary for L. pneumophila to cause disease. Plasmids were not detected in the L. pneumophila SG1 isolates from patients or water studied. There was an association of both lvh and rtxA with the virulent and predominant genotype detected by amplified fragment length polymorphism, termed AF1, whereas the avirulent common isolate from water termed AF16 did not have lvh or rtxA genes, with the exception of one isolate with rtxA. It was found that a PCR detection test strategy with lvh and rtxA as pathogenesis markers would be useful for determining the infection potential of an isolate.

Smoking status of Australian general practice patients and their attempts to quit

This paper seeks to report on smoking rates, quit attempt methods and success rates among adult patients attending Australian general practice. A cluster cross-sectional survey was used to survey adult patients (18+), who attended Australian GPs in during 2002 and 2003. Over a quarter of patients (27.3%; 95% CI: 26.0-28.7) were former smokers and one in five (21.5%; 95% CI: 20.1-22.9) were current smokers. Ninety-two percent of former and 80% of current smokers used only one method in their last quit attempt with cold turkey the most common method used by both former (88%) and current (62%) smokers. Overall, success rates varied from 77% for cold turkey to 23% for bupropion. Success rates were re-analysed to consider quit attempts post-bupropion listing, with success rate for cold turkey reduced to 40% while bupropion remained reasonably constant at 21%. By tailoring smoking cessation interventions to a smokers' preparedness to quit, scope exists to increase the pool of smokers offered strategies that are more effective in achieving abstinence and avoiding relapse rather than relying on less effective self-quitting behaviours such as cold turkey. (c) 2005 Elsevier Ltd. All rights reserved.

Evidence about tele-oncology applications and associated benefits for patients and their families

We conducted a systematic review of evidence on the ability of tele-oncology applications to improve access to care closer to home for adult rural patients affected by cancer. From 269 publications identified in the literature search, 54 studies met our inclusion criteria. Forty two were clinical studies (32 quantitative, eight qualitative and two that included both quantitative and qualitative methodology). Strength of evidence from quantitative clinical studies was assessed using an approach that takes account of both study design and study quality. Qualitative studies were appraised by giving scores for six areas of interest. In terms of the continuum of cancer care, the most common study area was psychosocial and supportive care. While there were a number of high quality studies, overall the evidence of benefit from tele-oncology was limited and few investigations had proceeded beyond the stage of establishing feasibility. The literature suggests some useful possibilities for new services to cancer patients in rural areas but it seems likely that these would need validation with suitable local studies.