Redefining dermatologists’ role in skin cancer early detection and follow-up care

Early diagnosis of melanoma leads to the best prognosis for patients and may be more likely achieved when those who are at high risk for melanoma undergo regular and systematic monitoring. However, many people rarely or never see a dermatologist. Risk prediction models (recently reviewed by Usher-Smith et al ) could assist to triage people into preventive care appropriate for their risk profile. Most risk prediction models contain measures of phenotype including skin, eye and hair colour as well as genetic mutations. Almost all also contain the number and size of naevi, as well as the presence of naevi with atypical features which are independently associated with melanoma risk. In the absence of formal population-based screening programs for melanoma in most countries worldwide, people with high risk phenotypes may need to consider regular monitoring or self-monitoring of their naevi , especially since the vast majority of melanomas are found by people themselves or their friend and relatives. Another group of patients that will require regular monitoring are patients who have been successfully treated for their first melanoma, whose risk to develop a second melanoma is greatly increased . In a US study of 89,515 melanoma survivors those with a previous diagnosis of melanoma had a 9-fold increased risk of developing subsequent melanoma compared with the general population, equating to a rate of 3.76 per 1000 person-years, while in an Australian study, risk of subsequent melanoma was 6 per 1000 person-years. Regular follow-up is therefore essential for melanoma survivors, especially during the first few years after initial melanoma diagnosis.

The organisational context of nursing care in stroke units: A case study approach

Background Internationally the stroke unit is recognised as the evidence-based model for patient management, although clarity about the effective components of stroke units is lacking. Whilst skilled nursing care has been proposed as one component, the theoretical and empirical basis for stroke nursing is limited. We attempted to explore the organisational context of stroke unit nursing, to determine those features that staff perceived to be important in facilitating high quality care. Design A case study approach was used, that included interviews with nurses and members of the multidisciplinary teams in two Canadian acute stroke units. A total of 20 interviews were completed, transcribed and analysed thematically using the Framework Approach. Trustworthiness was established through the review of themes and their interpretation by members of the stroke units. Findings Nine themes that comprised an organisational context that supported the delivery of high quality nursing care in acute stroke units were identified, and provide a framework for organisational development. The study highlighted the importance of an overarching service model to guide the organisation of care and the development of specialist and advanced nursing roles. Whilst multidisciplinary working appears to be a key component of stroke unit nursing, various organisational challenges to its successful implementation were highlighted. In particular the consequence of differences in the therapeutic approach of nurses and therapy staff needs to be explored in greater depth. Successful teamwork appears to depend on opportunities for the development of relationships between team members as much as the use of formal communication systems and structures. A co-ordinated approach to education and training, clinical leadership, a commitment to research, and opportunities for role and practice development also appear to be key organisational features of stroke unit nursing. Recommendations for the development of stroke nursing leadership and future research into teamwork in stroke settings are made.

Psychiatrists' views on pathways to care for people with schizophrenia in Vietnam

Objectives: Research about the outcomes of schizophrenia and the factors that determine them in developing countries is still limited. In this study, we interviewed experienced Vietnamese psychiatrists to examine their perspectives on outcome determinants in their country. The qualitative approach aimed to complement existing epidemiological knowledge and contribute to debate around the hypothesis that recovery is better in developing countries. Methods: Fifteen Vietnamese psychiatrists working in five leading psychiatric facilities participated in semi-structured interviews. Thematic content analysis of their expressed views identified three themes related to important outcome determinants in Vietnam: access to contemporary treatment, established patient-level prognostic indicators, and sociocultural variables. Results: The improving accessibility of modern treatment (including new medications, specialist staff and facilities) and increasing community adoption of a medical perspective on mental illness were seen as factors leading to improved outcomes, particularly in urban areas. However, some psychiatrists also identified the potentially beneficial nature of some aspects of Vietnamese society and culture being eroded by modernization, including traditional family structures, forms of employment and lifestyles. Conclusions: The perspectives of psychiatrists in this study suggest that socioeconomic change may be exerting conflicting influences on the outcomes of schizophrenia in Vietnam and other developing countries. Their views have implications in terms of how adequate treatment and support for people with severe mental illness can be provided in the context of limited resources, staffing and formal treatment options. Further research is needed to establish current recovery rates and prospectively explore the impact of modernization on outcomes.

Reduced visual function and its association with physical functioning in the Finnish adult population : Prevalence, causes, and need for eye care services

The purpose of this study was to estimate the prevalence and distribution of reduced visual acuity, major chronic eye diseases, and subsequent need for eye care services in the Finnish adult population comprising persons aged 30 years and older. In addition, we analyzed the effect of decreased vision on functioning and need for assistance using the World Health Organization’s (WHO) International Classification of Functioning, Disability, and Health (ICF) as a framework. The study was based on the Health 2000 health examination survey, a nationally representative population-based comprehensive survey of health and functional capacity carried out in 2000 to 2001 in Finland. The study sample representing the Finnish population aged 30 years and older was drawn by a two-stage stratified cluster sampling. The Health 2000 survey included a home interview and a comprehensive health examination conducted at a nearby screening center. If the invited participants did not attend, an abridged examination was conducted at home or in an institution. Based on our finding in participants, the great majority (96%) of Finnish adults had at least moderate visual acuity (VA ≥ 0.5) with current refraction correction, if any. However, in the age group 75–84 years the prevalence decreased to 81%, and after 85 years to 46%. In the population aged 30 years and older, the prevalence of habitual visual impairment (VA ≤ 0.25) was 1.6%, and 0.5% were blind (VA < 0.1). The prevalence of visual impairment increased significantly with age (p < 0.001), and after the age of 65 years the increase was sharp. Visual impairment was equally common for both sexes (OR 1.20, 95% CI 0.82 – 1.74). Based on self-reported and/or register-based data, the estimated total prevalences of cataract, glaucoma, age-related maculopathy (ARM), and diabetic retinopathy (DR) in the study population were 10%, 5%, 4%, and 1%, respectively. The prevalence of all of these chronic eye diseases increased with age (p < 0.001). Cataract and glaucoma were more common in women than in men (OR 1.55, 95% CI 1.26 – 1.91 and OR 1.57, 95% CI 1.24 – 1.98, respectively). The most prevalent eye diseases in people with visual impairment (VA ≤ 0.25) were ARM (37%), unoperated cataract (27%), glaucoma (22%), and DR (7%). One-half (58%) of visually impaired people had had a vision examination during the past five years, and 79% had received some vision rehabilitation services, mainly in the form of spectacles (70%). Only one-third (31%) had received formal low vision rehabilitation (i.e., fitting of low vision aids, receiving patient education, training for orientation and mobility, training for activities of daily living (ADL), or consultation with a social worker). People with low vision (VA 0.1 – 0.25) were less likely to have received formal low vision rehabilitation, magnifying glasses, or other low vision aids than blind people (VA < 0.1). Furthermore, low cognitive capacity and living in an institution were associated with limited use of vision rehabilitation services. Of the visually impaired living in the community, 71% reported a need for assistance and 24% had an unmet need for assistance in everyday activities. Prevalence of ADL, instrumental activities of daily living (IADL), and mobility increased with decreasing VA (p < 0.001). Visually impaired persons (VA ≤ 0.25) were four times more likely to have ADL disabilities than those with good VA (VA ≥ 0.8) after adjustment for sociodemographic and behavioral factors and chronic conditions (OR 4.36, 95% CI 2.44 – 7.78). Limitations in IADL and measured mobility were five times as likely (OR 4.82, 95% CI 2.38 – 9.76 and OR 5.37, 95% CI 2.44 – 7.78, respectively) and self-reported mobility limitations were three times as likely (OR 3.07, 95% CI 1.67 – 9.63) as in persons with good VA. The high prevalence of age-related eye diseases and subsequent visual impairment in the fastest growing segment of the population will result in a substantial increase in the demand for eye care services in the future. Many of the visually impaired, especially older persons with decreased cognitive capacity or living in an institution, have not had a recent vision examination and lack adequate low vision rehabilitation. This highlights the need for regular evaluation of visual function in the elderly and an active dissemination of information about rehabilitation services. Decreased VA is strongly associated with functional limitations, and even a slight decrease in VA was found to be associated with limited functioning. Thus, continuous efforts are needed to identify and treat eye diseases to maintain patients’ quality of life and to alleviate the social and economic burden of serious eye diseases.

Confidentiality issues in information systems in social care

Cooper, J. & Urquhart, C. (2004). Confidentiality issues in information systems in social care. In K. Grant, D.A. Edgar & M. Jordan (Eds.), Reflections on the past, making sense of today and predicting the future of information systems, 9th annual UKAIS (UK Academy of Information Systems) conference proceedings, Annual conference, 5-7 May 2004, Glasgow Caledonian University (CD-ROM). Glasgow: Glasgow Caledonian University for UKAIS Sponsorship: AHRC

The information needs and information-seeking behaviours of home-care workers and clients receiving home care

Cooper, J. & Urquhart, C. (2005). The information needs and information-seeking behaviours of home-care workers and clients receiving home care. Health Information and Libraries Journal, 22(2), 107-116. Sponsorship: AHRC

The quality of diabetes care in the community: practice, policy and culture

Aim: Diabetes is an important barometer of health system performance. This chronic condition is a source of significant morbidity, premature mortality and a major contributor to health care costs. There is an increasing focus internationally, and more recently nationally, on system, practice and professional-level initiatives to promote the quality of care. The aim of this thesis was to investigate the ‘quality chasm’ around the organisation and delivery of diabetes care in general practice, to explore GPs’ attitudes to engaging in quality improvement activities and to examine efforts to improve the quality of diabetes care in Ireland from practice to policy. Methods: Quantitative and qualitative methods were used. As part of a mixed methods sequential design, a postal survey of 600 GPs was conducted to assess the organization of care. This was followed by an in-depth qualitative study using semi-structured interviews with a purposive sample of 31 GPs from urban and rural areas. The qualitative methodology was also used to examine GPs’ attitudes to engaging in quality improvement. Data were analysed using a Framework approach. A 2nd observation study was used to assess the quality of care in 63 practices with a special interest in diabetes. Data on 3010 adults with Type 2 diabetes from 3 primary care initiatives were analysed and the results were benchmarked against national guidelines and standards of care in the UK. The final study was an instrumental case study of policy formulation. Semi-structured interviews were conducted with 15 members of the Expert Advisory Group (EAG) for Diabetes. Thematic analysis was applied to the data using 3 theories of the policy process as analytical tools. Results: The survey response rate was 44% (n=262). Results suggested care delivery was largely unstructured; 45% of GPs had a diabetes register (n=157), 53% reported using guidelines (n=140), 30% had formal call recall system (n=78) and 24% had none of these organizational features (n=62). Only 10% of GPs had a formal shared protocol with the local hospital specialist diabetes team (n=26). The lack of coordination between settings was identified as a major barrier to providing optimal care leading to waiting times, overburdened hospitals and avoidable duplication. The lack of remuneration for chronic disease management had a ripple effect also creating costs for patients and apathy among GPs. There was also a sense of inertia around quality improvement activities particularly at a national level. This attitude was strongly influenced by previous experiences of change in the health system. In contrast GP’s spoke positively about change at a local level which was facilitated by a practice ethos, leadership and special interest in diabetes. The 2nd quantitative study found that practices with a special interest in diabetes achieved a standard of care comparable to the UK in terms of the recording of clinical processes of care and the achievement of clinical targets; 35% of patients reached the HbA1c target of <6.5% compared to 26% in England and Wales. With regard to diabetes policy formulation, the evolving process of action and inaction was best described by the Multiple Streams Theory. Within the EAG, the formulation of recommendations was facilitated by overarching agreement on the “obvious” priorities while the details of proposals were influenced by personal preferences and local capacity. In contrast the national decision-making process was protracted and ambiguous. The lack of impetus from senior management coupled with the lack of power conferred on the EAG impeded progress. Conclusions: The findings highlight the inconsistency of diabetes care in Ireland. The main barriers to optimal diabetes management center on the organization and coordination of care at the systems level with consequences for practice, providers and patients. Quality improvement initiatives need to stimulate a sense of ownership and interest among frontline service providers to address the local sense of inertia to national change. To date quality improvement in diabetes care has been largely dependent the “special interest” of professionals. The challenge for the Irish health system is to embed this activity as part of routine practice, professional responsibility and the underlying health care culture.

Clinician judgment vs formal scales for predicting intracerebral hemorrhage outcomes.

OBJECTIVE: To compare the performance of formal prognostic instruments vs subjective clinical judgment with regards to predicting functional outcome in patients with spontaneous intracerebral hemorrhage (ICH). METHODS: This prospective observational study enrolled 121 ICH patients hospitalized at 5 US tertiary care centers. Within 24 hours of each patient's admission to the hospital, one physician and one nurse on each patient's clinical team were each asked to predict the patient's modified Rankin Scale (mRS) score at 3 months and to indicate whether he or she would recommend comfort measures. The admission ICH score and FUNC score, 2 prognostic scales selected for their common use in neurologic practice, were calculated for each patient. Spearman rank correlation coefficients (r) with respect to patients' actual 3-month mRS for the physician and nursing predictions were compared against the same correlation coefficients for the ICH score and FUNC score. RESULTS: The absolute value of the correlation coefficient for physician predictions with respect to actual outcome (0.75) was higher than that of either the ICH score (0.62, p = 0.057) or the FUNC score (0.56, p = 0.01). The nursing predictions of outcome (r = 0.72) also trended towards an accuracy advantage over the ICH score (p = 0.09) and FUNC score (p = 0.03). In an analysis that excluded patients for whom comfort care was recommended, the 65 available attending physician predictions retained greater accuracy (r = 0.73) than either the ICH score (r = 0.50, p = 0.02) or the FUNC score (r = 0.42, p = 0.004). CONCLUSIONS: Early subjective clinical judgment of physicians correlates more closely with 3-month outcome after ICH than prognostic scales.

Family caregiver views on patient-centred care at the end of life

Aim: The purpose of this study was to evaluate the patient-centredness of community palliative care from the perspective of family members who were responsible for the care of a terminally ill family member. Method: A survey questionnaire was mailed to families of a deceased family member who had been designated as palliative and had received formal home care services in the central west region of the Province of Ontario, Canada. Respondents reported on service use in the last four weeks of life; the Client-Centred Care Questionnaire (CCCQ) was used to evaluate the extent to which care was patient-centred. The accessibility instrument was used to assess respondent perception of access to care. Descriptive and inferential statistics were used for data analyses. Results: Of the 243 potential participants, 111 (46.0%) family caregivers completed the survey questionnaire. On average, respondents reported that they used five different services during the last four weeks of the care recipient's life. When asked about programme accessibility, care was also perceived as largely accessible and responsive to patients' changing needs (M=4.3 (SD=1.04)]. Most respondents also reported that they knew what service provider to contact if they experienced any problems concerning the care of their family member. However, this service provider was not consistent among respondents. Most respondents were relatively positive about the patient-centred care they received. There were however considerable differences between some items on the CCCQ. Respondents tended to provide more negative ratings concerning practical arrangement and the organization of care: who was coming, how often and when. They also rated more negatively the observation that service providers were quick to say something was possible when it was not the case. Bivariate analyses found no significant differences in CCCQ or accessibility domain scores by caregiver age, care recipient age, income, education and caregiver sex. Conclusions: Patient-centred care represents a service attribute that should be recognized as an important outcome to assess the quality of service delivery. This study demonstrates how this attribute can be evaluated in the provision of care. © 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science.

Towards improving the co-ordination of supportive cancer care services in the community

In this paper an evaluation approach to assess the co-ordination of supportive community cancer care is presented. The aim of the study was to identify current gaps in co-ordination of services in a selected region in the province of Ontario, Canada, determine how consistent these gaps were across the province of Ontario, and develop service design considerations for improving the co-ordination of supportive cancer care services in the province of Ontario. The study addressed services required by two populations - clients who had been recently diagnosed and those in the palliative stages of cancer. The evaluation was theory-driven and incorporated evidence from three methods: a systematic literature review, a community case study and a provincial scan. The results revealed the absence of a formal supportive cancer care system and a complex community care system. Supportive cancer care was shown to be delivered by a range of generalist programs that lacked specialisation in addressing the unique needs of cancer clients. In addition, there was no clear evidence of leadership for co-ordinating supportive cancer care, where client care was most often provided by multiple programs at any given point in time. The study generated recommendations to improve co-ordination of supportive cancer care at both the administrative as well as direct care level. © 2004 Elsevier Ireland Ltd. All rights reserved.

"they don't just disappear":Acknowledging death in the long-term care setting

Objective: The purpose of this study was to describe the value of a formal room blessing ritual held within a long-term care facility, from the perspectives of staff, residents, and family members. Method: A qualitative research study involving interviews with staff, residents, and family members was conducted to examine the perceived value of a room blessing ritual. Results: Twenty-four room blessing attendees participated in the study (nine staff, eight residents, and seven family members). Attendees felt that the room blessing provided an opportunity to formally acknowledge the death of the resident and their grief; the majority felt that this was a positive experience and that it provided an element of closure. Staff members and residents expressed their appreciation for the opportunity to connect with family members of the deceased to express their condolences during the ritual. Participants also identified the inclusivity of the ritual (i.e., an open invitation to all staff, residents, and family members) as a positive aspect that served as a reminder that others shared in their grief. Staff members felt that blessing the room for the new resident was an important component of the ritual, helping to bridge the gap between mourning and welcoming a new person. Staff, residents, and family members felt that the room blessing positively reflected the mission and values of the facility. The most highly valued aspect of the ritual for all attendees was the sharing of stories about the deceased to celebrate that person's life. Significance of results: Long-term care facilities need to recognize that formal supports to manage the bereavement needs of staff and residents, such as a room blessing ritual, should be incorporated into their model for managing end-of-life care, given the relationship between the emotional health of staff and the quality of care provided for residents. © 2012 Cambridge University Press.

Knowledge and perceived competence among nurses caring for the dying in long-term care homes

Background: The quality of care provided to dying long-term care (LTC) residents is often inadequate, which may be due to the lack of formal training that LTC staff receive in palliative care (PC). This cross-sectional study assessed PC knowledge and self-efficacy in ability to provide PC in a sample of registered nurses working in LTC homes. Method: A survey was conducted in four LTC homes in October 2009 to June 2010. Nursing staff knowledge of PC was evaluated using the Palliative Care Quiz for Nurses (PCQN). The Self-Efficacy in End-of-Life Care Survey (S-EOLC) was used to measure nursing staff confidence in their ability to provide PC. Findings: Close to 60% of the nursing staff participated (69 of 119). The participants did not score highly on the PCQN: the average correct score ranged from 52.50% to 63.41% across the homes. There were no significant differences between the homes for the mean number of correct responses on the PCQN (P=0.329) or mean scores for the three S-EOLC subscales. Rank ordering of the percentage of correct PCQN answers by item and LTC home demonstrated that similar misconceptions were held across homes. Conclusion: Despite their confidence in PC practice, the participants' PC knowledge gap reveals a need for PC training for staff working in LTC homes. The PC education and training provided should both include a gerontological perspective and address the expertise and knowledge already held by staff.

Caregiving at the end of life:perspectives from spousal caregivers and care recipients.

OBJECTIVE: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care. METHODS: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience. RESULTS: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care. SIGNIFICANCE OF RESULTS: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

The palliative care education needs of nursing home staff

Background: Palliative care is delivered in a number of settings, including nursing homes, where staff often have limited training in palliative care. Aim: We explored the level of palliative care knowledge among qualified staff delivering end-of-life care in nursing home settings, to inform the development of an appropriate education and training programme. Design: An audit of the educational needs assessment was performed using an anonymous postal questionnaire sent to 528 qualified nursing staff within 48 nursing homes. Findings: In total, 227 questionnaires were returned giving a response rate of 43%. Results indicated that less than half the sample had obtained formal training in the area of pain assessment and management and less than a quarter had obtained training in non-malignant conditions. Registered nurses in this study reported a lack of awareness of palliative care principles or national guidelines. Conclusion: Qualified nursing home staff agree that palliative care is a valuable model for care in their setting. There are clear opportunities for improvement in nursing home care, based on education and training in palliative care. Results also support the need for enhanced liaison between nursing homes and specialist palliative care services. © 2006 Elsevier Ltd. All rights reserved.