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.

Caregivers of people with neurodegenerative diseases: profile and unmet needs from a population-based survey in South Australia.

INTRODUCTION: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. METHODS: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using chi(2) were complemented with a regression analysis. RESULTS: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. CONCLUSION: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.

Highlighting the unmet needs of Australian adults with diabetes : first results from Diabetes MILES - Australia

In July 2011, The Australian Centre for Behavioural Research in Diabetes undertook a national survey of adults with type 1 and type 2 diabetes. The survey focused on the psychological, social, and behavioural aspects of living with diabetes.

Psychiatric disorders and unmet needs in Australian police cells

To determine the prevalence of current psychiatric disorders and unmet needs in a sample of police cell detainees in Victoria. A cross-sectional descriptive study was conducted, including data linkage with the Victoria Police database and the Victorian Psychiatric Case Register. In Melbourne, Australia, 150 detainees were recruited from two busy metropolitan police stations. Outcome measures included estimated rates of psychiatric disorders, using the Structured Clinical Interview for DSM-IV-TR, and individual needs, using the Camberwell Assessment of Need – Forensic Version. One quarter (n = 32, 25.4%) of detainees had a prior admission to a psychiatric hospital, and three quarters met current criteria for a diagnosable mental disorder. The most common disorders were substance dependence (n = 81, 54%) and mood disorders (n = 60, 40%). A third met diagnostic criteria for both a mental illness and a substance use disorder. The odds of being classified with mood (OR = 10.1), anxiety (OR = 2.2), psychotic (OR = 15.4) and substance use disorders (OR = 26.3) were all significantly higher in the current sample as compared with the general population. Detainees with a mental illness identified significantly more needs and significantly more unmet needs (e.g. psychological distress) than those who did not rate as having a current mental illness. There remains a pressing need to evaluate standardized screening tools for mental illnesses in police cells to provide timely access to assessment and treatment services. The need for functional interagency collaborations are highlighted and discussed.

Unmet needs of palliative home care patients and carers

This thesis focused on the unmet needs of patients, carers and nursing staff from a private palliative home care service in Victoria. Study results showed that participants were reluctant to disclose their unmet needs, despite having clearly identifiable problems in physical and psychosocial domains.

Unmet needs and distress in people with inoperable lung cancer at the commencement of treatment

Purpose : People with lung cancer report a higher burden of unmet needs, specifically psychological and daily living unmet needs. They experience more psychological distress and more physical hardship than other tumour sites. This study examined the levels of unmet need and psychological distress in inoperable lung cancer patients at the start of treatment.

Methods : A cross-section survey methodology was employed using baseline data from a randomised controlled trial designed to evaluate a supportive care intervention. Eligible lung cancer patients were approached to participate at the start of treatment. Consenting patients completed questionnaires prior to or just after the commencement of treatment. Reliable and valid measures included Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale and Brief Distress Thermometer.

Results : Of the 108 patients participating, the top unmet need was ‘Dealing with concerns about your family’s fears and worries’ (62%); with the next four also coming from the psychological/emotional domain, but, on average, most needs related to medical communication. Thirty two percent of patients reported clinical or subclinical anxiety and 19% reported HADS scores suggestive of clinical or subclinical depression. Moreover, 39.8% of the sample reported distress above the cut-off on the distress thermometer and this was associated with higher needs for each need subscale (p < 0.05).

Conclusions : People with lung cancer have high levels of unmet needs especially regarding psychological/emotional or medical communication. People with lung cancer who are classified as distressed have more unmet needs.

Unmet needs and depression among carers of people newly diagnosed with cancer

AIMS: The aims of this analysis were to examine levels of unmet needs and depression among carers of people newly diagnosed with cancer and to identify groups who may be at higher risk, by examining relationships with demographic characteristics. METHODS: One hundred and fifty dyads of people newly diagnosed with cancer and their carers, aged 18years and older, were recruited from four Australian hospitals. People with cancer receiving adjuvant cancer treatment with curative intent, were eligible to participate. Carers completed the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C45), and both carers and patients completed the Centre of Epidemiologic-Depression Scale (CES-D). RESULTS: Overall, 57% of carers reported at least one, 37% at least three, 31% at least five, and 15% at least 10 unmet needs; the most commonly endorsed unmet needs were in the domains of information and health care service needs. Thirty percent of carers and 36% of patients were at risk of clinical depression. A weak to moderate positive relationship was observed between unmet needs and carer depression (r=0.30, p<0.001). Carer levels of unmet needs were significantly associated with carer age, hospital type, treatment type, cancer type, living situation, relationship status (in both uni- and multi-factor analysis); person with cancer age and carer level of education (in unifactor analysis only); but not with carer gender or patient gender (in both uni- and multi-factor analyses). CONCLUSION: Findings highlight the importance of developing tailored programmes to systematically assist carers who are supporting patients through the early stages of cancer treatment.

Unmet needs of young interventional cardiologists: the EAPCI Young survey

Aims: As part of the EAPCI Young Initiative, the European Association of Percutaneous Cardiovascular Interventions (EAPCI) conducted a survey to address the educational needs of young interventional cardiologists. Methods and results: A questionnaire was distributed to all individuals registered in the ESC database aged <36 years with an interest in interventional cardiology. Nearly two-thirds of participants (60%) indicated that they had difficulty in finding a fellowship training position. The desire for a fellow's course at European level was expressed by 95%, while 94% were in favour of developing a network of young interventional cardiologists in Europe. More than three-quarters of respondents (79%) said they had had difficulty in obtaining funding to attend EuroPCR. Multiple difficulties were identified in setting up a research programme, two of the more frequent being problematic access to research networks and the difficulties of finding a mentor. Career orientation was identified as another issue, with more than half of respondents (59%) declaring they followed career options by chance. Conclusions: The survey underlines the need to fill a gap in order to address the needs of young interventional cardiologists. It may serve as a starting point for developing educational initiatives targeted at young interventional cardiologists.

Unmet needs of young interventional cardiologists: proceedings from the 2nd summit of the European association of percutaneous cardiovascular interventions

Every year, the EAPCI Board invites presidents and representatives of the interventional working groups affiliated to EAPCI to discuss issues and strategies surrounding the goals of education and advanced healthcare practices in interventional cardiology. In 2013, the 2nd EAPCI Summit, organised by the EAPCI Board in collaboration with the NIFYI committee, was entirely dedicated to discussing the unmet needs of the young generation of interventional cardiologists. In this article, we highlight a selection of the key points and proposed actions highlighted during the summit.

The Opportunity Costs of STEM Degrees and the Unmet Needs of the Low-Skilled: Two labour market problems explained. CEPS Policy Brief No. 295, 26 June 2013

There is general consensus that to achieve employment growth, especially for vulnerable groups, it is not sufficient to simply kick-start economic growth: skills among both the high- and low-skilled population need to be improved. In particular, we argue that if the lack of graduates in science, technology, engineering and mathematics (STEM) is a true problem, it needs to be tackled via incentives and not simply via public campaigns: students are not enrolling in ‘hard-science’ subjects because the opportunity cost is very high. As far as the low-skilled population is concerned, we encourage EU and national policy-makers to invest in a more comprehensive view of this phenomenon. The ‘low-skilled’ label can hide a number of different scenarios: labour market detachment, migration, and obsolete skills that are the result of macroeconomic structural changes. For this reason lifelong learning is necessary to keep up with new technology and to shield workers from the risk of skills obsolescence and detachment from the labour market.

Precompetitive data sharing as a catalyst to address unmet needs in Parkinson's disease

Parkinson's disease is a complex heterogeneous disorder with urgent need for disease-modifying therapies. Progress in successful therapeutic approaches for PD will require an unprecedented level of collaboration. At a workshop hosted by Parkinson's UK and co-organized by Critical Path Institute's (C-Path) Coalition Against Major Diseases (CAMD) Consortiums, investigators from industry, academia, government and regulatory agencies agreed on the need for sharing of data to enable future success. Government agencies included EMA, FDA, NINDS/NIH and IMI (Innovative Medicines Initiative). Emerging discoveries in new biomarkers and genetic endophenotypes are contributing to our understanding of the underlying pathophysiology of PD. In parallel there is growing recognition that early intervention will be key for successful treatments aimed at disease modification. At present, there is a lack of a comprehensive understanding of disease progression and the many factors that contribute to disease progression heterogeneity. Novel therapeutic targets and trial designs that incorporate existing and new biomarkers to evaluate drug effects independently and in combination are required. The integration of robust clinical data sets is viewed as a powerful approach to hasten medical discovery and therapies, as is being realized across diverse disease conditions employing big data analytics for healthcare. The application of lessons learned from parallel efforts is critical to identify barriers and enable a viable path forward. A roadmap is presented for a regulatory, academic, industry and advocacy driven integrated initiative that aims to facilitate and streamline new drug trials and registrations in Parkinson's disease.