The experience of Australian aged care workers during a trial implementation of a palliative care outcomes programme.

End of life care is an essential part of the role of Australian aged care homes (ACHs). However, there is no national framework to support aged care staff in systematically identifying residents with palliative care needs or to routinely assess, respond to, and measure end of life needs. The Palliative Care Outcomes Collaboration (PCOC) is a national outcomes and benchmarking programme which aims to systematically improve palliative care for people who are approaching the end of life, and for their families and carers. The PCOC Wicking Model for Residential Aged Care was developed and piloted in four Australian ACHs. This paper reports on the qualitative findings from semi-structured interviews and focus groups conducted with ACH staff (N = 37) to examine feasibility. Thematic analysis identified three overarching themes about the pilot: (i) processes to successfully prepare and support ACHs; (ii) appropriateness of PCOC tools for the ACH setting; and (iii) realised and potential benefits of the model for ACHs. The lessons presented valuable insights to refine the PCOC Wicking Model and enrich understanding of the potential challenges and solutions for implementing similar programs within ACHs in future. The results suggest that key to successfully preparing ACHs for implementation of the PCOC Wicking Model is an authentic and well-paced collaborative approach with ACHs to ensure the resources, structures and systems are in place and appropriate for the setting. The PCOC Wicking Model for Residential Aged Care is a promising prototype to support ACHs in improving palliative and end of life care outcomes for residents and their carers.

Sleeping-related distress in a palliative care population: A national, prospective, consecutive cohort.

BACKGROUND: Sleep, a multi-dimensional experience, is essential for optimal physical and mental wellbeing. Poor sleep is associated with worse wellbeing but data are scarce from multi-site studies on sleeping-related distress in palliative care populations. AIM: To evaluate patient-reported distress related to sleep and explore key demographic and symptom distress related to pain, breathing or fatigue. DESIGN: Australian national, consecutive cohort study with prospectively collected point-of-care data using symptoms from the Symptom Assessment Scale (SAS). SETTING/PARTICIPANTS: People (n = 118,117; 475,298 phases of care) who died while being seen by specialist palliative care services (n = 152) 2013-2019. Settings: inpatient (direct care, consultative); community (outpatient clinics, home, residential aged care). RESULTS: Moderate/severe levels of sleeping-related distress were reported in 11.9% of assessments, more frequently by males (12.7% vs 10.9% females); people aged <50 years (16.2% vs 11.5%); and people with cancer (12.3% vs 10.0% for other diagnoses). Sleeping-related distress peaked with mid-range Australia-modified Karnofsky Performance Status scores (40-60).Strong associations existed between pain-, breathing- and fatigue-related distress in people who identified moderate/severe sleeping-related distress, adjusted for age, sex and functional status. Those reporting moderate/severe sleeping-related distress were also more likely to experience severe pain-related distress (adjusted odds ratios [OR] 6.6; 95% confidence interval (CI) 6.3, 6.9); breathing-related distress (OR 6.2; 95% CI 5.8, 6.6); and fatigue-related distress (OR 10.4; 95% CI 9.99-10.8). CONCLUSIONS: This large, representative study of palliative care patients shows high prevalence of sleeping-related distress, with strong associations shown to distress from other symptoms including pain, breathlessness and fatigue.

The impact of the mode of survey administration on estimates of daily smoking for mobile phone only users.

BACKGROUND: Over the past decade, there have been substantial changes in landline and mobile phone ownership, with a substantial increase in the proportion of mobile-only households. Estimates of daily smoking rates for the mobile phone only (MPO) population have been found to be substantially higher than the rest of the population and telephone surveys that use a dual sampling frame (landline and mobile phones) are now considered best practice. Smoking is seen as an undesirable behaviour; measuring such behaviours using an interviewer may lead to lower estimates when using telephone based surveys compared to self-administered approaches. This study aims to assess whether higher daily smoking estimates observed for the mobile phone only population can be explained by administrative features of surveys, after accounting for differences in the phone ownership population groups. METHODS: Data on New South Wales (NSW) residents aged 18 years or older from the NSW Population Health Survey (PHS), a telephone survey, and the National Drug Strategy Household Survey (NDSHS), a self-administered survey, were combined, with weights adjusted to match the 2013 population. Design-adjusted prevalence estimates and odds ratios were calculated using survey analysis procedures available in SAS 9.4. RESULTS: Both the PHS and NDSHS gave the same estimates for daily smoking (12%) and similar estimates for MPO users (20% and 18% respectively). Pooled data showed that daily smoking was 19% for MPO users, compared to 10% for dual phone owners, and 12% for landline phone only users. Prevalence estimates for MPO users across both surveys were consistently higher than other phone ownership groups. Differences in estimates for the MPO population compared to other phone ownership groups persisted even after adjustment for the mode of collection and demographic factors. CONCLUSIONS: Daily smoking rates were consistently higher for the mobile phone only population and this was not driven by the mode of survey collection. This supports the assertion that the use of a dual sampling frame addresses coverage issues that would otherwise be present in telephone surveys that only made use of a landline sampling frame.

Appetite-Related Distress Is Burdensome in the Last Sixty Days of Life of People Receiving Palliative Care: A National Longitudinal Consecutive Cohort Study.

Background: People with life-limiting illnesses experience a range of distressing symptoms. Appetite-related symptoms are common, but studies have found varied prevalence and the distress caused has had limited quantification. Objectives: To examine the clinicodemographic factors and trajectory of appetite-related distress in the last 60 days of life. Design/Setting/Subjects: Consecutive cohort of 109,385 patients (359,038 data points) using specialist palliative care services in the Australian Palliative Care Outcomes Collaboration (PCOC). Measurements: Patient-reported appetite-related distress using the PCOC Symptom Assessment Scale. Results: Diagnoses included cancer (75%), end-stage organ failure (11%), neurodegenerative disease (4%), dementia (3%), and other noncancer (7%). Fifty-eight percent reported some degree of appetite-related distress at least once in the last 60 days of life. Daily mean distress scores did not vary greatly by diagnosis and the distributions of symptom severity were not linked with performance status. There was a sharp decline in mean distress for all diagnostic groups around 7-10 days before death. Moderate to severe distress was associated with nausea-, bowel-, pain-, and breathing-related distress, controlling for key baseline factors. Conclusion: Appetite-related distress is prevalent and burdensome in the 60 days before death and is strongly associated with distress from other cardinal symptoms.

The SF-36v2 and SF-12v2 health surveys in New Zealand: norms, scoring coefficients and cross-country comparisons.

OBJECTIVE: To provide New Zealand population norms for version 2 of the SF-36 and SF-12 health surveys and report scoring coefficients that enable the construction of Physical and Mental Component Summary scores from New Zealand SF-36v2 and SF-12v2 data. APPROACH: Norms for the SF-36v2 and scoring coefficients for the Physical and Mental Component Summary scores are estimated using 2006/07 New Zealand Health Survey data, which included 12,488 adults (aged 15 years and over). Norms for the SF-12v2 are derived from 2008 New Zealand General Social Survey data, including 8,721 adults. Comparisons are made between New Zealand norms for versions 1 and 2 of the SF-36 instrument. In addition, New Zealand SF-36v2 and SF-12v2 norms and the scoring coefficients are compared with those for the United States and South Australia. CONCLUSION: Differences between: 1) New Zealand population norms for the SF-36 versions 1 and 2; and 2) SF-36v2 and SF-12v2 population norms for New Zealand and those for the United States and South Australia highlight the importance of using version-specific and country-specific population norms. IMPLICATIONS: The analysis reported here allows for the appropriate use of the SF-36v2 and SF-12v2 instruments in New Zealand.