Maria Kelly

Background: This study aims to examine the potential of currently available administrative health and social care data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) evaluate the impact of recent health system reforms and changes to data protection laws. Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability, and mechanisms for data access. Results: Nine datasets with potential for PEoLC research were identified, including death certificate data, hospital episode data, pharmacy claims data, one national survey, four disease registries (cancer, cystic fibrosis, motor neurone and interstitial lung disease) and a national renal transplant registry. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the Eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. Conclusions: Ongoing reform initiatives and recent changes to data privacy laws combined with detailed knowledge of the datasets, appropriate permissions, and good study design will facilitate future use of administrative health and social care data for PEoLC research in Ireland.

Background: This study aims to examine the potential of currently available administrative health data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify administrative health data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) estimate the impact of recent health system reforms and changes to data protection laws. Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability and mechanisms for data access. Results: Eight datasets with potential for PEoLC research were identified, including four disease registries, (cancer, cystic fibrosis, motor neurone and interstitial lung disease), death certificate data, hospital episode data, community prescription data and one national survey. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. Conclusions: With appropriate permissions, detailed knowledge of the datasets and good study design currently available administrative health data can be used for PEoLC research. Ongoing reform initiatives and recent changes to data privacy laws will facilitate future use of administrative health data for PEoLC research.

Objective: This study compares the characteristics and place of death of patients with cancer receiving specialist palliative care in acute hospitals with those who do not.Methods: All patients with incident invasive cancer in Ireland (1994–2016 inclusive), excluding non-melanoma skin cancer, who attended a cancer centre and died in 2016 were identified from cancer registry data. Patients were categorised based on a diagnosis code ‘Encounter for palliative care’ from linked hospital episode data. Place of death was categorised from death certificate data. Data were analysed using descriptive statistics, χ²tests and logistic regression.Results: Of n=4103 decedents identified, 62% had a hospital-based palliative care encounter in the year preceding death. Age (p<0.001), marital status (p=0.017), deprivation index (p<0.001) and health board region (p=0.008) were independent predictors of having a palliative care encounter. Place of death differed by palliative care encounter group: 45% of those with an encounter died in hospital versus 50% without an encounter, 33% vs 16% died in a hospice and 18% vs 28% died at home (p<0.001).Conclusion: Almost two-thirds of patients with cancer who attended a cancer centre and died in 2016 had a palliative care encounter. They were younger, less likely to be married and more likely to be from deprived areas. Having accounted for sociodemographic factors, there was evidence of regional variation in receiving care. Demographic and clinical factors and the provision of health services in a region need to be considered together when assessing end-of-life care.

Analysing linked, routinely collected data may be useful to identify characteristics of patients with suspected lung cancer who could benefit from early assessment for palliative care. The aim of this study was to compare characteristics of newly diagnosed lung cancer patients dying within 30 days of diagnosis (short term survivors) with those surviving more than 30 days. To identify indicators for early palliative care assessment we distinguished between characteristics available at diagnosis (age, gender, smoking status, marital status, comorbid disease, admission type, tumour stage and histology) from those available post diagnosis. A second aim was to examine the association between receiving any tumour-directed treatment, place of death and survival time. A retrospective observational population based study comparing lung cancer patients who died within 30 days of diagnosis (short term survivors) with those who survived longer using Chi-squared tests and logistic regression. Incident lung cancer (ICD-03:C34) patients diagnosed 2005–2012 inclusive who died before 01–01-2014 (n = 14,228) were identified from the National Cancer Registry of Ireland linked to death certificate data and acute hospital episode data. One in five newly diagnosed lung cancer patients died within 30 days of diagnosis. After adjusting for stage and histology, death within 30 days was higher in patients who were aged 80 years or older (adjusted OR 2.46; 95%CI 2.05–3.96; p < 0.001), patients with emergency admissions at diagnosis (adjusted OR 2.96; 95%CI 2.61–3.37; p < 0.001) and patients with any comorbidities at diagnosis (adjusted OR 1.32 95%CI 1.15–1.52; p < 0.001). Overall, 75% of those who died within 30 days died in hospital compared to 43% of longer term survivors. We have shown a high proportion of lung cancer patients who die within 30 days of diagnosis are older, have comorbidities and are admitted through the emergency department. These characteristics, available at diagnosis, may be useful prognostic factors to guide decisions on early assessment for palliative care for lung cancer patients. Patients who die shortly after diagnosis are more likely to die in hospital so reporting place of death by survival time may be useful to evaluate interventions to reduce deaths in acute hospitals.

Radical prostatectomy (RP) is a leading treatment option for localised prostate cancer. Although hospital in-patient stays accounts for much of the costs of treatment, little is known about population-level trends in length-of-stay (LOS). We investigated factors predicting hospital LOS and readmissions in men who had RP following prostate cancer. Incident prostate cancers (ICD-O3: C61), diagnosed January 2002-December 2008 in men < 70 years, were identified from the Irish Cancer Registry, and linked to public hospital episodes. For those who had RP (ICD-9 CM procedure codes 60.3, 60.4, 60.5, 60.62) the associated hospital episode was identified. LOS was calculated as the number of days from date of admission to date of discharge. Patient-, tumour-, and health service-related factors predicting longer LOS (upper quartile, >9 days) were investigated using logistic regression. Patterns in day-case and in-patient readmissions within 28 days of discharge following RP were explored. Over the study period 9096 prostate cancers were diagnosed in men under 70, 26.5% of whom had RP by end of follow-up 31/12/2009. Two of eight public hospitals and eight of forty surgeons carried out 50% of all public-service RPs. Median LOS was 8 days (10th-90th percentile = 6-13 days) and fell significantly over time (2002, 9 days; 2008, 7 days; p < 0.001). In adjusted analyses men who were not married (OR = 1.71, 95% CI 1.25-2.34), had co-morbidities (OR = 1.64, 95% CI 1.25-2.16) or stage III-IV cancer (OR = 2.19, 95% CI 1.44-3.34) were significantly more likely to have prolonged LOS. Those treated in higher volume hospitals (annual median >49 RPs) or by higher volume surgeons (annual median >17 RPs) were significantly less likely to have prolonged LOS (OR = 0.34, 95% CI 0.26-0.45; OR = 0.55, 95% CI 0.42-0.71 respectively). Median LOS after RP decreased between 2002 and 2008 in Ireland but it remains higher than in both England and the US. Although volumes of RPs conducted in Ireland are low, there is considerable variation between hospitals and surgeons. Hospital and surgeon volume were strong predictors of shorter LOS, after adjusting for other variables. These factors point to a need for a comprehensive review of prostate cancer service provision.

The impact of developments in colorectal cancer surgery on length-of-stay (LOS) and re-admission have not been well described. In a population-based analysis, we investigated predictors of LOS and emergency readmission after the initial surgery episode.