Preparing linked population data for research: cohort study of prisoner perinatal health outcomes.

BACKGROUND: A study of pregnancy outcomes related to pregnancy in prison in New South Wales, Australia, designed a two stage linkage to add maternal history of incarceration and serious mental health morbidity, neonatal hospital admission and infant congenital anomaly diagnosis to birth data. Linkage was performed by a dedicated state-wide data linkage authority. This paper describes use of the linked data to determine pregnancy prison exposure pregnancy for a representative population of mothers. METHODS: Researchers assessed the quality of linked records; resolved multiple-matched identities; transformed event-based incarceration records into person-based prisoner records and birth records into maternity records. Inconsistent or incomplete records were censored. Interrogation of the temporal relationships of all incarceration periods from the prisoner record with pregnancies from birth records identified prisoner maternities. Interrogation of maternities for each mother distinguished prisoner mothers who were incarcerated during pregnancy, from prisoner control mothers with pregnancies wholly in the community and a subset of prisoner mothers with maternities both types of maternity. Standard descriptive statistics are used to provide population prevalence of exposures and compare data quality across study populations stratified by mental health morbidity. RESULTS: Women incarcerated between 1998 and 2006 accounted for less than 1 % of the 404,000 women who gave birth in NSW between 2000 and 2006, while women with serious mental health morbidity accounted for 7 % overall and 68 % of prisoners. Rates of false positive linkage were within the predicted limits set by the linkage authority for non-prisoners, but were tenfold higher among prisoners (RR 9.9; 95%CI 8.2, 11.9) and twice as high for women with serious mental health morbidity (RR 2.2; 95%CI 1.9, 2.6). This case series of 597 maternities for 558 prisoners pregnant while in prison (of whom 128 gave birth in prison); and 2,031 contemporaneous prisoner control mothers is one of the largest available. CONCLUSIONS: Record linkage, properly applied, offers the opportunity to extend knowledge about vulnerable populations not amenable to standard ascertainment. Dedicated linkage authorities now provide linked data for research. The data are not research ready. Perinatal exposures are time-critical and require expert processing to prepare the data for research.

Palliative care, Version 1.2014. Featured updates to the NCCN Guidelines.

The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. These NCCN Guidelines Insights summarize the NCCN panel's discussions and guideline updates from 2013 and 2014. These include modifications/additions to palliative care screening and assessment protocols, new considerations for discussing the benefits and risks of anticancer therapy, and approaches to advance care planning. Recent updates focus on enhanced patient-centered care and seek to promote earlier integration of palliative care and advance care planning in oncology.

Trends in HIV, hepatitis B and hepatitis C prevalence among Australian prisoners - 2004, 2007, 2010.

OBJECTIVE: To report the prevalence of markers for HIV infection, hepatitis B and hepatitis C among Australian prison entrants. DESIGN: Cross-sectional survey conducted over 2-week periods in 2004, 2007 and 2010. SETTING: Reception prisons in New South Wales, Queensland, Tasmania and Western Australia. PARTICIPANTS: Individuals entering prison from the community during the survey periods. MAIN OUTCOME MEASURE: Prevalence of anti-HIV antibody (anti-HIV), hepatitis B surface antigen (HBsAg), anti-hepatitis B core antibody (anti-HBc) and anti-hepatitis C virus antibody (anti-HCV). RESULTS: The study included 1742 prison entrants: 588 (33.8%) in 2004, 536 (30.8%) in 2007 and 618 (35.5%) in 2010. The age-standardised prevalence estimates for anti-HIV, HBsAg and anti-HBc were 0.4%, 2.3% and 21.7% respectively, and remained stable over the three survey periods. The age-standardised prevalence estimate for anti-HCV was 29.0%; it decreased over time (33.3% in 2004 v 23.2% in 2010; P = 0.001), and this coincided with a decrease in prison entrants reporting injecting drug use (58.3% [343/588] in 2004 v 45.3% [280/618] in 2010; P < 0.001). Among injecting drug users, the prevalence of anti-HCV was 57.2% and did not change significantly over time. Of those who were anti-HCV positive, 33.7% (140/415) were unaware of their infection status, and 74.3% (185/249) of those who tested positive for anti-HBc reported that they had never had hepatitis B. CONCLUSIONS: HIV prevalence is low in the Australian prisoner population but transmission remains a risk. Despite a decrease in the proportion of prison entrants reporting injecting drug use, prevalence of hepatitis B and hepatitis C has remained high. Treatment and prevention initiatives should be prioritised for this population.

Pregnancy, prison and perinatal outcomes in New South Wales, Australia: a retrospective cohort study using linked health data.

BACKGROUND: Studies from the United States and the United Kingdom have found that imprisoned women are less likely to experience poorer maternal and perinatal outcomes than other disadvantaged women. This population-based study used both community controls and women with a history of incarceration as a control group, to investigate whether imprisoned pregnant women in New South Wales, Australia, have improved maternal and perinatal outcomes. METHODS: Retrospective cohort study using probabilistic record linkage of routinely collected data from health and corrective services in New South Wales, Australia. Comparison of the maternal and perinatal outcomes of imprisoned pregnant women aged 18-44 years who gave birth between 2000-2006 with women who were (i) imprisoned at a time other than pregnancy, and (ii) community controls. OUTCOMES OF INTEREST: onset of labour, method of birth, pre-term birth, low birthweight, Apgar score, resuscitation, neonatal hospital admission, perinatal death. RESULTS: Babies born to women who were imprisoned during pregnancy were significantly more likely to be born pre-term, have low birthweight, and be admitted to hospital, compared with community controls. Pregnant prisoners did not have significantly better outcomes than other similarly disadvantaged women (those with a history of imprisonment who were not imprisoned during pregnancy). CONCLUSIONS: In contrast to the published literature, we found no evidence that contact with prison health services during pregnancy was a "therapunitive" intervention. We found no association between imprisonment during pregnancy and improved perinatal outcomes for imprisoned women or their neonates. A history of imprisonment remained the strongest predictor of poor perinatal outcomes, reflecting the relative health disadvantage experienced by this population of women.

Adult cancer pain.

Pain is a common symptom associated with cancer and its treatment. Pain management is an important aspect of oncologic care, and unrelieved pain significantly comprises overall quality of life. These NCCN Guidelines list the principles of management and acknowledge the range of complex decisions faced in the management oncologic pain. In addition to pain assessment techniques, these guidelines provide principles of use, dosing, management of adverse effects, and safe handling procedures of pharmacologic therapies and discuss a multidisciplinary approach for the management of cancer pain.

Distress management.

The integration of psychosocial care into the routine care of all patients with cancer is increasingly being recognized as the new standard of care. These NCCN Clinical Practice Guidelines in Oncology for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. They are intended to assist oncology teams identify patients who require referral to psychosocial resources and to give oncology teams guidance on interventions for patients with mild distress to ensure that all patients with distress are recognized and treated.

Palliative care.

These guidelines were developed and updated by an interdisciplinary group of experts based on clinical experience and available scientific evidence. The goal of these guidelines is to help patients with cancer experience the best quality of life possible throughout the illness trajectory by providing guidance for the primary oncology team for symptom screening, assessment, palliative care interventions, reassessment, and afterdeath care. Palliative care should be initiated by the primary oncology team and augmented by collaboration with an interdisciplinary team of palliative care experts.

Health-state utilities in a prisoner population: a cross-sectional survey.

BACKGROUND: Health-state utilities for prisoners have not been described. METHODS: We used data from a 1996 cross-sectional survey of Australian prisoners (n = 734). Respondent-level SF-36 data was transformed into utility scores by both the SF-6D and Nichol's method. Socio-demographic and clinical predictors of SF-6D utility were assessed in univariate analyses and a multivariate general linear model. RESULTS: The overall mean SF-6D utility was 0.725 (SD 0.119). When subdivided by various medical conditions, prisoner SF-6D utilities ranged from 0.620 for angina to 0.764 for those with none/mild depressive symptoms. Utilities derived by the Nichol's method were higher than SF-6D scores, often by more than 0.1. In multivariate analysis, significant independent predictors of worse utility included female gender, increasing age, increasing number of comorbidities and more severe depressive symptoms. CONCLUSION: The utilities presented may prove useful for future economic and decision models evaluating prison-based health programs.

Managing pain from advanced cancer in the palliative care setting.

Managing complex pain at the end of life is an essential aspect of palliative care. Such care is best guided by a comprehensive evaluation of the physiologic sources of pain to determine appropriate analgesia. Using the case of Mrs. J, a woman with advanced ovarian cancer, key principles of complex pain management at the end of life are reviewed, including optimum use of opioids and co-analgesics. In addition to physical assessment, total care of the patient and family facing imminent death should be based on an assessment of psychological, social, and spiritual factors. The assessment and management of pain and suffering are guided by an interdisciplinary team focused on goals of comfort and facilitating a death that respects the life of the patient who is dying.

Prevalence of Mantoux positivity and annual risk of infection for tuberculosis in New South Wales prisoners, 1996 and 2001.

OBJECTIVES: This study compares the prevalence of Mantoux positivity among prisoners in NSW in 1996 and 2001 and examines factors associated with Mycobacterium tuberculosis infection. DESIGN: Cross-sectional random samples of prisoners, including a longitudinal cohort of prisoners screened in both 1996 and 2001. SETTING: 29 correctional centres. PARTICIPANTS: 747 men and 167 women participated in the 2001 NSW Inmate Health Survey; a cohort of 104 prisoners from the 1996 and 2001 NSW Inmate Health Surveys. RESULTS: The prevalence of Mantoux positivity remained stable between 1996 and 2001 (12% and 14%, p = 0.2), and increased among prisoners from Asian backgrounds (21% and 47%, p = 0.02). The annual risk of infection in the cohort among those detained continuously between 1996 and 2001 was 3.1%, and among recidivists it was 2.7% (p = 0.6). CONCLUSION: The risk of M. tuberculosis infection for Australian prisoners is assessed to be approximately four times higher than that for the community, however there is no attributable risk to the prison environment itself.

Management of cancer pain.

There are four basic approaches to cancer pain control: modify the source of pain, alter central perception of pain, modulate transmission of pain to the central nervous system, and block transmission of pain to the central nervous system. Systemic pharmacologic management aimed at the first three of these approaches is the cornerstone of the treatment of most cancer patients with moderate to severe pain. Optimal pharmacologic management of cancer pain requires selection of the appropriate analgesic drug; prescription of the appropriate dose; administration of the analgesic by the appropriate route; scheduling of the appropriate dosing interval; prevention of persistent pain and relief of breakthrough pain; aggressive titration of the dose of the analgesic; prevention, anticipation, and management of analgesic side effects; consideration of sequential trials of opioid analgesics; and use of appropriate co-analgesic drugs for specific pain syndromes. Most clinicians should be able to control most of the pain in most of their cancer patients. Collaboration with pain and hospice/palliative care experts should help the rest. No cancer patient should live or die with unrelieved pain.

Sedation for the relief of refractory symptoms in the imminently dying: a fine intentional line.

There is a continuum of the goals of comfort and function in palliative care that begins with comfort and function being equal priorities and sedation being unacceptable. As disease progresses, the goals and preferences of the patient turn to coping with the loss of function caused by the disease and acceptance of unintentional sedation from the disease, its therapies, or symptom relief interventions. As patients approach the end of life, they may need intentional sedation for the relief of refractory symptoms. Such sedation can be divided into three categories: routine, infrequent, and extraordinary with respect to the frequency, difficulty, and risks involved with the drugs and routes of administration required to induce and maintain a level of sedation that relieves the patient's physical and existential symptoms. Extraordinary sedation with continuous infusions of midazolam, thiopental, and propofol can relieve refractory symptoms in most patients in their final days of life. Palliative care clinicians should become comfortable with the ethical justification and technical expertise needed to provide this essential, extraordinary care to the small but deserving number of patients in whom routine and infrequent sedation does not adequately relieve their suffering.

Children of prisoners: a growing public health problem.

OBJECTIVES: To estimate the number and proportion of children in New South Wales affected by parental incarceration, and to describe the health impact of punitive incarceration on the children of prisoners. METHODS: In 2001, NSW Corrections Health Service conducted a cross-sectional survey of prison inmates randomly selected from each of the 29 prisons in NSW, representing 11% of male and 30% of female inmates in the State. The survey included questions regarding parental status and number of children. A population model was developed, which incorporated increases in the prison population and recidivism, to estimate the number of children under 16 years of age in NSW ever having experienced parental incarceration. RESULTS: In 2001, there were approximately 14,500 children under the age of 16 years in NSW who experienced parental incarceration during the year. It is estimated that in 2001 there were 60,000 children under 16 years in NSW who had ever experienced parental incarceration in their lifetime, representing 4.3% of all children and 20.1% of Indigenous children. CONCLUSIONS: The number of children who have experienced parental incarceration is significant in NSW and across Australia. Indigenous children are much more likely to experience parental incarceration than non-Indigenous children. IMPLICATIONS: Children of prisoners are at high risk of negative health outcomes and are themselves at an increased risk of offending later in life. The needs of these children must be recognised and policies introduced to reduce the adversities they face. The social, politico-legal and economic conditions that are contributing to the continuing rise in incarceration rates must be recognised, and measures must be taken to reduce this trend.