Inequity in the provision of and access to palliative care for cancer patients. Results from the Italian survey of the dying of cancer (ISDOC)

<p>Abstract</p> <p>Background</p> <p>The palliative services and programs have been developed with different intensity and modalities in all countries. Several studies have reported that a geographic variation in the availability and provision of palliative care services between and within countries exists, and that a number of vulnerable groups are excluded from these services. This survey estimates the distribution of places of care for Italian cancer patients during the last three months of their lives, the proportion receiving palliative care support at home and in hospital, and the factors associated with the referral to palliative care services.</p> <p>Methods</p> <p>This is a mortality follow-back survey of 2,000 cancer deaths identified with a 2-stage probability sample, representative of the whole country. Information on patients' experience was gathered from the non-professional caregiver through an interview, using an adapted version of the VOICES questionnaire. A section of the interview concerned the places of care and the palliative care services provided to patients. Multivariate logistic regression analyses were conducted to identify the determinants of palliative care service use.</p> <p>Results</p> <p>Valid interviews were obtained for 67% of the identified caregivers (n = 1,271). Most Italian cancer patients were cared for at home (91%) or in hospital (63%), but with substantial differences within the country. Only 14% of Italian cancer patients cared for at home against 20% of those admitted to hospital, received palliative care support. The principal determinants identified for receiving these service were: an extended interval between diagnosis and death (P = 0.01) and the caregiver's high educational level (P = 0.01) for patients at home; the low patient's age (P < 0.01) and the caregiver's high educational level (P = 0.01) for patients in hospital.</p> <p>Conclusion</p> <p>In Italy palliative care services are not equally available across the country. Moreover, access to the palliative care services is strongly associated with socio demographic characteristics of the patients and their caregivers. Italian Policy-makers need to equalise palliative care provision and access across the country to meet the needs of all cancer patients.</p

Cancer Trajectories at the End of Life: is there an effect of age and gender?

<p>Abstract</p> <p>Background</p> <p>Few empirical data show the pattern of functional decline at the end of life for cancer patients, especially among older patients.</p> <p>Methods</p> <p>In a mortality follow-back survey (the Italian Survey of the Dying of Cancer – ISDOC) a random sample of 1,271 lay caregivers were interviewed, at a mean of 234 days after bereavement. The main outcome was number of days before death when the patient experienced a permanent functional decline.</p> <p>Results</p> <p>1,249 (98%) caregivers answered the question about patient's function. The probability to be free from a functional disability was high (94%) 52 weeks before death, but was lower for older age groups (15% for those aged 85 or more) and women (8%). It remained stable until 18 weeks before death, then fell to 63% at 12 weeks and 49% at 6 weeks before death (among those aged 85 or more the figures were 50% and 41%). The pattern was consistent across sub-groups, except for patients affected by Central Nervous System tumors who experienced a longer, slower functional decline.</p> <p>Conclusion</p> <p>This study provides empirical support for the declining trajectory in cancer, and suggests that the decline commences at around 12 weeks in all age groups, even among patients over 85 years.</p

The effectiveness of the Liverpool care pathway in improving end of life care for dying cancer patients in hospital. A cluster randomised trial

<p>Abstract</p> <p>Background</p> <p>Most cancer patients still die in hospital, mainly in medical wards. Many studies in different countries have shown the poor quality of end-of-life care delivery in hospitals. The Program "Liverpool Care Pathway for the dying patient" (LCP), developed in the UK to transfer the hospice model of care into hospitals and other care settings, is a complex intervention to improve the quality of end-of-life care. The results from qualitative and quantitative studies suggest that the LCP Program can improve significantly the quality of end-of-life care delivery in hospitals, but no randomised trial has been conducted till now.</p> <p>Methods and design</p> <p>This is a randomized cluster trial, stratified by regions and matched for assessment period. Pairs of eligible medical wards from different hospitals will be randomized to receive the LCP-I Program or no intervention until the end of the trial. The LCP-I Program will be implemented by a Palliative Care Unit.</p> <p>The assessment of the end-points will be performed for all cancer deaths occurred in the six months after the end of the LCP-I implementation in the experimental wards and, in the same period of time, in the matched control wards. The primary end-point is the overall quality of end-of-life care provided on the ward to dying cancer patients and their families, assessed using the Global Scale of the Italian version of the Toolkit <it>"After-death Bereaved Family Member Interview</it>".</p> <p>Discussion</p> <p>This study can be interpreted as a Phase III trial according to the Medical Research Council Framework. In this study, the effectiveness of a fully defined intervention is assessed by comparing the distribution of the endpoints in the experimental and in the control arm.</p> <p>Research ID</p> <p>RFPS-2006-6-341619</p> <p>Trial registration</p> <p>ClinicalTrials.gov Identifier: <a href="http://www.clinicaltrials.gov/ct2/show/NCT01081899">NCT01081899</a></p

Using a computerized provider order entry system to meet the unique prescribing needs of children: description of an advanced dosing model

<p>Abstract</p> <p>Background</p> <p>It is well known that the information requirements necessary to safely treat children with therapeutic medications cannot be met with the same approaches used in adults. Over a 1-year period, Duke University Hospital engaged in the challenging task of enhancing an established computerized provider order entry (CPOE) system to address the unique medication dosing needs of pediatric patients.</p> <p>Methods</p> <p>An advanced dosing model (ADM) was designed to interact with our existing CPOE application to provide decision support enabling complex pediatric dose calculations based on chronological age, gestational age, weight, care area in the hospital, indication, and level of renal impairment. Given that weight is a critical component of medication dosing that may change over time, alerting logic was added to guard against erroneous entry or outdated weight information.</p> <p>Results</p> <p>Pediatric CPOE was deployed in a staggered fashion across 6 care areas over a 14-month period. Safeguards to prevent miskeyed values became important in allowing providers the flexibility to override the ADM logic if desired. Methods to guard against over- and under-dosing were added. The modular nature of our model allows us to easily add new dosing scenarios for specialized populations as the pediatric population and formulary change over time.</p> <p>Conclusions</p> <p>The medical needs of pediatric patients vary greatly from those of adults, and the information systems that support those needs require tailored approaches to design and implementation. When a single CPOE system is used for both adults and pediatrics, safeguards such as redirection and suppression must be used to protect children from inappropriate adult medication dosing content. Unlike other pediatric dosing systems, our model provides active dosing assistance and dosing process management, not just static dosing advice.</p

Does quality of life assessment in palliative care look like a complex screening program?

<p>Abstract</p> <p>Background</p> <p>Palliative Care (PC) is an approach that improves the Quality of Life (QoL). A number of QoL assessment tools have been developed and validated in PC. It is not clear how QoL should be measured in PC practice. A procedure of QoL assessment in clinical practice can be defined as a clinical intervention focused on QoL assessment. This is a typical complex intervention that should be appropriately developed and described in all its components and assessed for its effectiveness. The aim of this study is to define a framework to help researchers to develop and evaluate clinical interventions focused on QoL assessment in PC.</p> <p>Methods</p> <p>A study group of experts in PC and in research methodology was set up to define a framework that would describe the principles of clinical interventions focused on QoL assessment in PC. The study group discussed the WHO Population Screening Principles as a possible useful framework. The new principles had to be developed taking into account the following criteria: 1) specific to PC practice; 2) address a single underlying characteristic; 3) anchored to relevant literature; 4) consistent with the WHO PC definition.</p> <p>With regard to contents and the format of the principles, discussions occurred among the study group members through a cognitive process.</p> <p>Results</p> <p>We reviewed each of the WHO Population Screening Principles and adapted them to QoL assessment, taking into account the defined criteria. As a result, a new framework, <it>the QoL Assessment Principles in Palliative Care</it> was developed. It consisted of 4 sections, for a total of 11 principles.</p> <p>Conclusions</p> <p>The WHO Screening Principles framework was used to outline the eleven essential principles to be considered in developing and/or evaluating clinical interventions focused on QoL assessment in PC. <it>The QoL Assessment Principles in Palliative Care</it> identified could represent a methodological and ethical standard to be considered when developing and evaluating a clinical intervention focused on QoL assessment in PC.</p