Food futures: Three provocations to challenge HCI interventions

Our contemporary concerns about food range from food security to agricultural sustainability to getting dinner on the table for family and friends. This book investigates food issues as they intersect with participatory Internet culture--blogs, wikis, online photo- and video-sharing platforms, and social networks in efforts to bring about a healthy, socially inclusive, and sustainable food future. Focusing on our urban environments provisioned with digital and network capacities, and drawing on such "bottom-up" sociotechnical trends as DIY and open source, the chapters describe engagements with food and technology that engender (re-)creative interactions.

Implementing improvements to health care services in the US

In a previous blog I was critical of the US health care system for not using cost-effectiveness information to plan their services. Today I’m going to talk about the implementation of innovation in health services, something the US does really well compared to Australia.

What do most Americans think of cost-effectiveness research in health care?

My impression is that explicit data on the cost-effectiveness of different health care services are not valued highly by US policy makers. An example is a recent decision to approve ipilimumab for the treatment of metastatic melanoma. The extra health benefit over standard treatment is 2.1 months in previously untreated patients and the cost is $120,000 for 4 doses. This is poor value for money. Had $120,000 been allocated to an intensive lifestyle modification programme for diabetes risk (Diabet Med. 2004 Nov;21(11):1229-36) then 67 years of life or 800 months could have been returned. A massive increase in health benefits for the same costs.

Multiple perspectives on quality of life for residents with dementia in long term care facilities: Protocol for a comprehensive Australian study

Background Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL. Methods The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations. Conclusions This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

Influencers on quality of life as reported by people living with dementia in long-term care: A descriptive exploratory approach

Background Over half of the residents in long-term care have a diagnosis of dementia. Maintaining quality of life is important, as there is no cure for dementia. Quality of life may be used as a benchmark for caregiving, and can help to enhance respect for the person with dementia and to improve care provision. The purpose of this study was to describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed, to improve quality of life. Methods A descriptive exploratory approach. A subsample of twelve residents across two Australian states from a national quantitative study on quality of life was interviewed. Data were analysed thematically from a realist perspective. The approach to the thematic analysis was inductive and data-driven. Results Three themes emerged in relation to influencers and strategies related to quality of life: (a) maintaining independence; (b) having something to do, and; (c) the importance of social interaction. Conclusions The findings highlight the importance of understanding individual resident needs and consideration of the complexity of living in large group living situations, in particular in regard to resident decision-making.

Process quality indicators targeting cognitive impairment to support quality of care for older people with cognitive impairment in emergency departments

Objectives The objective of this study was to develop process quality indicators (PQIs) to support the improvement of care services for older people with cognitive impairment in emergency departments (ED). Methods A structured research approach was taken for the development of PQIs for the care of older people with cognitive impairment in EDs, including combining available evidence with expert opinion (phase 1), a field study (phase 2), and formal voting (phase 3). A systematic review of the literature identified ED processes targeting the specific care needs of older people with cognitive impairment. Existing relevant PQIs were also included. By integrating the scientific evidence and clinical expertise, new PQIs were drafted and, along with the existing PQIs, extensively discussed by an advisory panel. These indicators were field tested in eight hospitals using a cohort of older persons aged 70 years and older. After analysis of the field study data (indicator prevalence, variability across sites), in a second meeting, the advisory panel further defined the PQIs. The advisory panel formally voted for selection of those PQIs that were most appropriate for care evaluation. Results In addition to seven previously published PQIs relevant to the care of older persons, 15 new indicators were created. These 22 PQIs were then field tested. PQIs designed specifically for the older ED population with cognitive impairment were only scored for patients with identified cognitive impairment. Following formal voting, a total of 11 PQIs were included in the set. These PQIs targeted cognitive screening, delirium screening, delirium risk assessment, evaluation of acute change in mental status, delirium etiology, proxy notification, collateral history, involvement of a nominated support person, pain assessment, postdischarge follow-up, and ED length of stay. Conclusions This article presents a set of PQIs for the evaluation of the care for older people with cognitive impairment in EDs. The variation in indicator triggering across different ED sites suggests that there are opportunities for quality improvement in care for this vulnerable group. Applied PQIs will identify an emergency services' implementation of care strategies for cognitively impaired older ED patients. Awareness of the PQI triggers at an ED level enables implementation of targeted interventions to improve any suboptimal processes of care. Further validation and utility of the indicators in a wider population is now indicated.

Structural quality indicators to support quality of care for older people with cognitive impairment in emergency departments

Objectives The purpose of this study was to identify the structural quality of care domains and to establish a set of structural quality indicators (SQIs) for the assessment of care of older people with cognitive impairment in emergency departments (EDs). Methods A structured approach to SQI development was undertaken including: 1) a comprehensive search of peer-reviewed and gray literature focusing on identification of evidence-based interventions targeting structure of care of older patients with cognitive impairment and existing SQIs; 2) a consultative process engaging experts in the care of older people and epidemiologic methods (i.e., advisory panel) leading to development of a draft set of SQIs; 3) field testing of drafted SQIs in eight EDs, leading to refinement of the SQI set, and; 4) an independent voting process among the panelists for SQI inclusion in a final set, using preestablished inclusion and exclusion criteria. Results At the conclusion of the process, five SQIs targeting the management of older ED patients with cognitive impairment were developed: 1) the ED has a policy outlining the management of older people with cognitive impairment during the ED episode of care; 2) the ED has a policy outlining issues relevant to carers of older people with cognitive impairment, encompassing the need to include the (family) carer in the ED episode of care; 3) the ED has a policy outlining the assessment and management of behavioral symptoms, with specific reference to older people with cognitive impairment; 4) the ED has a policy outlining delirium prevention strategies, including the assessment of patients' delirium risk factors, and; 5) the ED has a policy outlining pain assessment and management for older people with cognitive impairment. Conclusions This article presents a set of SQIs for the evaluation of performance in caring for older people with cognitive impairment in EDs.

Saudi Arabian adult intensive care unit pressure ulcer incidence and risk factors: A prospective cohort study

The purpose of this study was to identify pressure ulcer (PU) incidence and risk factors that are associated with PU development in patients in two adult intensive care units (ICU) in Saudi Arabia. A prospective cohort study design was used. A total of 84 participants were screened second daily basis until discharge or death, over a consecutive 30-day period, out of which 33 participants with new PUs were identified giving a cumulative hospital-acquired PU incidence of 39·3% (33/84 participants). The incidence of medical devices-related PUs was 8·3% (7/84). Age, length of stay in the ICU, history of cardiovascular disease and kidney disease, infrequent repositioning, time of operation, emergency admission, mechanical ventilation and lower Braden Scale scores independently predicted the development of a PU. According to binary logistic regression analyses, age, longer stay in ICU and infrequent repositioning were significant predictors of all stages of PUs, while the length of stay in the ICU and infrequent repositioning were associated with the development of stages II-IV PUs. In conclusion, PU incidence rate was higher than that reported in other international studies. This indicates that urgent attention is required for PU prevention strategies in this setting.

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.

Guidelines for syringe driver management in palliative care

These guidelines are intended to provide clinicians and palliative care services with guidelines to inform practice, the development of policy and procedures, and associated training and education programs in relation to portable subcutaneous infusion device (syringe driver) management.

Prevalence of diet related risk factors for chronic disease in male prisoners in a high secure prison

BACKGROUND/OBJECTIVES Research on prisoners is limited and demonstrates a group with disproportionate numbers from disadvantaged backgrounds, known to have a high burden of disease, much of which is diet related. The aim of this study was to gauge the presence of markers of chronic disease, as a basis for food and nutrition policy in prisons. METHODS/SUBJECTS A cross-sectional study design was used with a convenience sample of prisoners in a male 945 bed high secure facility. Face to face interviews with physical measures of height, weight, body fat, waist circumference and blood pressure were collected along with fasting bloods. Data was confirmed with facility records, observations and staff interviews. Full ethics approval was obtained. Results were compared with studies of Australian prisoners and the general population. RESULTS The mean age was 35.5 years (n=120). Prevalence rates were: obesity 14%, diabetes 5%, hypertension 26.7% and smoking 55.8%. Self-report of daily physical activity was 84%, with 51% participating ≥two times daily. Standard food provision was consistent with dietary recommendations, except sodium was high. Where fasting bloods were obtained (n=78) dyslipidaemia was 56.4% with the Metabolic Syndrome present in 26%. CONCLUSIONS Prevalence of diabetes and heart disease risk appear similar to the general population, however obesity was lower and smoking higher. The data provides evidence that markers of chronic disease are present, with this the first study to describe the Metabolic Syndrome in prisoners. Food and nutrition policy in this setting is complex and should address the duty of care issues that exist.

What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses

Purpose: Many haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision. Methods: Open text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n=136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes. Results: This study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified; the first relating to the challenges nurses face in providing care (‘care challenges’), and the second relating to the challenges of providing survivorship care within contemporary health care systems (‘system challenges’). Conclusions: Cancer nurses perceive the nature of haematological cancer and its treatment, and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not. Implications for Cancer Survivors: Addressing the issues identified will facilitate cancer nurses’ provision of survivorship care, and help address haematological survivors’ needs with regard to the physical and psychosocial consequences of their cancer and treatment.

Survivorship care provision for patients with hematologic malignancies: The quest for quality evidence

This is an editorial that depicts the importance for developing more quality evidence to guide the survivorship care provision for patients with hematologic malignancies. Treatments for hematologic malignancies are often complex and debilitating, with increased risk of immune suppression and infections1. Some patients receive allogeneic stem cell transplantation that often requires in-patient stay of several weeks and life-long medical follow up. In recent years, advances in treatment regimens, and an aging population saw an increasing number of patients living with a hematologic malignancies or surviving curative therapy.2 The increased use of targeted therapies in hematologic malignancies (e.g. rituximab for non-Hodgkin lymphoma, bortezomib in multiple myeloma and imatinib in Chronic Myelogenous Leukemia has also resulted in improved overall survival...

Perceived safety, quality and cultural competency of maternity care for culturally and linguistically diverse women in Queensland

Various policies, plans, and initiatives have been implemented to provide safe, quality, and culturally competent care to patients within Queensland’s healthcare system. A series of models of maternity care are available in Queensland that range from standard public care to private midwifery care. The current study aimed to determine whether identifying as Culturally or Linguistically Diverse (CALD) was associated with the perceived safety, quality, and cultural competency of maternity care from a consumer perspective, and to identify specific needs and preferences of CALD maternity care consumers. Secondary analysis of data collected in the Having a Baby in Queensland Survey 2012 was used to compare the experiences of 655 CALD women to those of 4049 non-CALD women in Queensland, Australia, across three stages of maternity care: pregnancy, labour and birth, and after birth. After adjustment for model of maternity care received and socio-demographic characteristics, CALD women were significantly more likely than non-CALD women to experience suboptimal staff technical competence in pregnancy, overall perceived safety in pregnancy and labour/birth, and interpersonal sensitivity in pregnancy and labour/birth. Approximately 50% of CALD women did not have the choice to use a translator or interpreter, or the gender of their care provider, during labour and birth. Thirteen themes of preferences and needs of CALD maternity care consumers based on ethnicity, cultural beliefs, or traditions were identified, however, these were rarely met. Findings imply that CALD women in Queensland experience disadvantageous maternity care with regards to perceived staff technical competence, safety, and interpersonal sensitivity, and receive care that lacks cultural competence. Improved access to support persons, continuity and choice of carer, and staff availability and training is recommended.

A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.