Browsing College of Nursing and Health Sciences by Author "Abernethy, Amy Pickar"
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ItemThe Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481](2005) Woods, David A; Abernethy, Amy Pickar; Shelby-James, Tania Maree; Fazekas, Belinda Susan; Currow, David ChristopherBackground : The Karnofsky Performance Status (KPS) is a gold standard scale. The Thorne-modified KPS (TKPS) focuses on community-based care and has been shown to be more relevant to palliative care settings than the original KPS. The Australia-modified KPS (AKPS) blends KPS and TKPS to accommodate any setting of care. Methods : Performance status was measured using all three scales for palliative care patients enrolled in a randomized controlled trial in South Australia. Care occurred in a range of settings. Survival was defined from enrollment to death. Results : Ratings were collected at 1600 timepoints for 306 participants. The median score on all scales was 60. KPS and AKPS agreed in 87% of ratings; 79% of disagreements occurred within 1 level on the 11-level scales. KPS and TKPS agreed in 76% of ratings; 85% of disagreements occurred within one level. AKPS and TKPS agreed in 85% of ratings; 87% of disagreements were within one level. Strongest agreement occurred at the highest levels (70–90), with greatest disagreement at lower levels (≤40). Kappa coefficients for agreement were KPS-TKPS 0.71, KPS-AKPS 0.84, and AKPS-TKPS 0.82 (all p < 0.001). Spearman correlations with survival were KPS 0.26, TKPS 0.27 and AKPS 0.26 (all p < 0.001). AKPS was most predictive of survival at the lower range of the scale. All had longitudinal test-retest validity. Face validity was greatest for the AKPS. Conclusion : The AKPS is a useful modification of the KPS that is more appropriate for clinical settings that include multiple venues of care such as palliative care. ItemBereavement help-seeking following an 'expected' death: a cross-sectional randomised face-to-face population survey(2008) Plummer, John Lewis; Currow, David Christopher; Allen, Katrina; Aoun, Samar M; Hegarty, Margaret Mary; Abernethy, Amy PickarBackground : This study examines the prevalence and nature of bereavement help-seeking among the population who experienced an "expected" death in the five years before their survey response. Such whole population data are not limited by identification through previous access to specific services nor practitioners. Methods : In a randomised, cross-sectional, state-wide population-based survey, 6034 people over two years completed face-to-face interviews in South Australia by trained interviewers using piloted questions (74.2% participation rate). Respondent demographics, type of grief help sought, and circumstantial characteristics were collected. Uni- and multi-variate logistic regression models were created. Results : One in three people (1965/6034) had experienced an 'expected' death of someone close to them in the last five years. Thirteen per cent sought help for their grief from one or more: friend/family members (10.7%); grief counselors (2.2%); spiritual advisers (1.9%); nurses/doctors (1.5%). Twenty five respondents (1.3%) had not sought, but would have valued help with their grief. In multi-variate regression modeling, those who sought professional help (3.4% of the bereaved) had provided more intense care (OR 5.39; CI 1.94 to14.98; p < 0.001), identified that they were less able to 'move on' with their lives (OR 7.08; CI 2.49 to 20.13; p = 0.001) and were more likely not to be in full- or part-time work (OR 3.75; CI 2.31 – 11.82; p = 0.024; Nagelkerke's R2 = 0.33). Conclusion : These data provide a whole-of-population baseline of bereavement help-seeking. The uniquely identified group who wished they had sought help is one where potentially significant health gains could be made as we seek to understand better any improved health outcomes as a result of involving bereavement services. ItemCaregivers for people with end-stage lung disease: characteristics and unmet needs in the whole population(2008) Currow, David Christopher; Burns, Catherine Mary; Ward, Alicia M; Clark, Katherine; Abernethy, Amy Pickar ItemCaresearch: finding and evaluating Australia's missing palliative care literature(2005) Tieman, Jennifer; Abernethy, Amy Pickar; Fazekas, Belinda Susan; Currow, David Christopher ItemComorbidity, age, race and stage at diagnosis in colorectal cancer: a retrospective, parallel analysis of two health systems(2008) Abbott, David H; Grambow, Steven C; Zafar, S Yousuf; Abernethy, Amy Pickar; Marcello, Jennifer E; Herndon II, James E; Rowe, Krista L; Kolimaga, Jane T; Zullig, Leah L; Patwardhan, Meenal; Provenzale, Dawn TBackground : Stage at diagnosis plays a significant role in colorectal cancer (CRC) survival. Understanding which factors contribute to a more advanced stage at diagnosis is vital to improving overall survival. Comorbidity, race, and age are known to impact receipt of cancer therapy and survival, but the relationship of these factors to stage at diagnosis of CRC is less clear. The objective of this study is to investigate how comorbidity, race and age influence stage of CRC diagnosis. Methods : Two distinct healthcare populations in the United States (US) were retrospectively studied. Using the Cancer Care Outcomes Research and Surveillance Consortium database, we identified CRC patients treated at 15 Veterans Administration (VA) hospitals from 2003–2007. We assessed metastatic CRC patients treated from 2003–2006 at 10 non-VA, fee-for-service (FFS) practices. Stage at diagnosis was dichotomized (non-metastatic, metastatic). Race was dichotomized (white, non-white). Charlson comorbidity index and age at diagnosis were calculated. Associations between stage, comorbidity, race, and age were determined by logistic regression. Results : 342 VA and 340 FFS patients were included. Populations differed by the proportion of patients with metastatic CRC at diagnosis (VA 27% and FFS 77%) reflecting differences in eligibility criteria for inclusion. VA patients were mean (standard deviation; SD) age 67 (11), Charlson index 2.0 (1.0), and were 63% white. FFS patients were mean age 61 (13), Charlson index 1.6 (1.0), and were 73% white. In the VA cohort, higher comorbidity was associated with earlier stage at diagnosis after adjusting for age and race (odds ratio (OR) 0.76, 95% confidence interval (CI) 0.58–1.00; p = 0.045); no such significant relationship was identified in the FFS cohort (OR 1.09, 95% CI 0.82–1.44; p = 0.57). In both cohorts, no association was found between stage at diagnosis and either age or race. Conclusion : Higher comorbidity may lead to earlier stage of CRC diagnosis. Multiple factors, perhaps including increased interactions with the healthcare system due to comorbidity, might contribute to this finding. Such increased interactions are seen among patients within a healthcare system like the VA system in the US versus sporadic interactions which may be seen with FFS healthcare. ItemHandheld computers for data entry: high tech has its problems too(BioMed Central - http://www.biomedcentral.com, 2007-02-20) Shelby-James, Tania Maree; Abernethy, Amy Pickar; McAlindon, Andrew; Currow, David ChristopherBackground The use of handheld computers in medicine has increased in the last decade, they are now used in a variety of clinical settings. There is an underlying assumption that electronic data capture is more accurate that paper-based data methods have been rarely tested. This report documents a study to compare the accuracy of hand held computer data capture versus more traditional paper-based methods. Methods Clinical nurses involved in a randomised controlled trial collected patient information on a hand held computer in parallel with a paper-based data form. Both sets of data were entered into an access database and the hand held computer data compared to the paper-based data for discrepancies. Results Error rates from the handheld computers were 67.5 error per 1000 fields, compared to the accepted error rate of 10 per 10,000 field for paper-based double data entry. Error rates were highest in field containing a default value. Conclusion While popular with staff, unacceptable high error rates occurred with hand held computers. Training and ongoing monitoring are needed if hand held computers are to be used for clinical data collection. ItemPalliative management of refractory dyspnea in COPD(2006) Currow, David Christopher; Abernethy, Amy Pickar; Uronis, H E ItemPromoting patient centred palliative care through case conferencing(2007) Williams, Helena; Shelby-James, Tania Maree; Currow, David Christopher; Phillips, Paddy Andrew; Abernethy, Amy Pickar ItemPromoting patient centred palliative care through case conferencing(Royal Australian College of General Practitioners, 2007-11) Shelby-James, Tania Maree; Currow, David Christopher; Phillips, Paddy Andrew; Williams, Helena; Abernethy, Amy PickarBACKGROUND What are the characteristics of case conferences between general practitioners and specialised palliative care services (SPCS)? METHODS Study participants were adults (N=461) with pain in the preceding 3 months who were referred to a SPCS and their GPs (N=230). Patients were randomised to case conferences or routine care by SPCS. RESULTS One hundred and sixty-seven conferences were held; 46 patients withdrew and 142 died before the conference could be conducted. Medicare payment was requested for 72 (43%) conferences. Median time from randomisation to case conference was 52 days (SD: 55), and from case conference to death/end of study was 79 days (SD: 166). Twenty-five percent of conferences had over three health professionals participant; patients and/or their caregivers participated in 91%. Average conference duration was 39 minutes (SD: 13). Mean conference length did not increase when more health professionals were present (3 vs. >3, 39 [SD: 14] vs. 42 [SD 11] minutes, p=0.274), nor when patients/caregivers were present (present vs. absent, 39 [SD: 13] vs. 44 [SD: 14] minutes, p=0.159). DISCUSSION Case conferencing involving SPCS, the GP, other health professionals and the patient can be an efficient part of routine care. ItemRandomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnoea.(BMJ Publishing Group - http://bjo.bmjjournals.com/, 2003-09) Abernethy, Amy Pickar; Currow, David Christopher; Frith, David; Fazekas, Belinda Susan; McHugh, Annie; Bui, Chuong ItemRefining a Checklist for Reporting Patient Populations and Service Characteristics in Hospice and Palliative Care Research(Elsevier, 2012-03-21) Currow, David Christopher; Tieman, Jennifer; Greene, Aine; Zafar, S Yousuf; Wheeler, Jane L; Abernethy, Amy PickarContext and Objective Diagnoses and prognoses vary widely across sub-populations of people referred to specialist palliative care services; variations also exist in the way these services are configured. These variations create substantial heterogeneity in palliative care populations enrolled in research studies which, in turn, limits the generalizability of study results. This paper reports on the refinement of a checklist of patient/research participant and service/research site descriptors; the checklist can be completed for any palliative care research study. Its purposes are to: (1) facilitate the design and reporting of rigorous palliative care research, and thereby, (2) aid clinicians in appropriately applying research evidence in clinical practice. Methods A previously published framework (five domains; 13 core sub-domains and 25 noncore sub-domains) was used to code all research articles (n=189) published over a 12-month period in the three leading palliative care journals internationally. Results In descending order, the most frequently reported sub-domains were: patient age, patient gender and patient diagnosis; model of service delivery and patient performance status. Data in certain sub-domains, such as time from referral to death, socio-economic indices and ethnicity, were rarely reported; none of the included studies reported whole-of-service or whole-of-population data. With a total of 2,457 core sub-domains that could have been reported (189x13), the included studies provided data on 30% (746/2457). A simplified list of sub-domains is proposed. Different domains are now identified for different study populations in palliative care. Conclusion Checklists such as CONSORT focus mainly on internal validity. The proposed checklist adds a checklist specific to the content of palliative care, focusing on external validity and the study population. Key words: study characteristics; reporting guidelines; publishing/standards; quality controls; checklists; applicability; generalisability ItemStudy protocol: a phase III randomised, double-blind, parallel arm, stratified, block randomised, placebo-controlled trial investigating the clinical effect and cost-effectiveness of sertraline for the palliative relief of breathlessness in people with chronic breathlessness(BMJ Publishing Group, 2016-10-26) Watts, Gareth J; Clark, Katherine; Agar, Meera Ruth; Davidson, Patricia; McDonald, Christine; Lam, Lawrence; Sajkov, Dimitar; McCaffrey, Nicola; Doogue, Matthew; Abernethy, Amy Pickar; Currow, David Christopher; Palliative Care Clinical Studies Collaborative (PaCCSC)Introduction Breathlessness remains a highly prevalent and distressing symptom for many patients with progressive life-limiting illnesses. Evidence-based interventions for chronic breathlessness are limited, and there is an ongoing need for high-quality research into developing management strategies for optimal palliation of this complex symptom. Previous studies have suggested that selective serotonin reuptake inhibitors such as sertraline may have a role in reducing breathlessness. This paper presents the protocol for a large, adequately powered randomised study evaluating the use of sertraline for chronic breathlessness in people with progressive life-limiting illnesses. Methods and analysis A total of 240 participants with modified Medical Research Council Dyspnoea Scale breathlessness of level 2 or higher will be randomised to receive either sertraline or placebo for 28 days in this multisite, double-blind study. The dose will be titrated up every 3 days to a maximum of 100 mg daily. The primary outcome will be to compare the efficacy of sertraline with placebo in relieving the intensity of worst breathlessness as assessed by a 0–100 mm Visual Analogue Scale. A number of other outcome measures and descriptors of breathlessness as well as caregiver assessments will also be recorded to ensure adequate analysis of participant breathlessness and to allow an economic analysis to be performed. Participants will also be given the option of continuing blinded treatment until either study data collection is complete or net benefit ceases. Appropriate statistical analysis of primary and secondary outcomes will be used to describe the wealth of data obtained. Ethics and dissemination Ethics approval was obtained at all participating sites. Results of the study will be submitted for publication in peer-reviewed journals and the key findings presented at national and international conferences. Trial registration number ACTRN12610000464066. ItemWho provides care for people dying of cancer? A comparison of a rural and metropolitan cohort in a South Australian bereaved population study(Wiley, 2015-02-17) Burns, Catherine Mary; Del Grande, Eleonora; Tieman, Jennifer; Abernethy, Amy Pickar; Currow, David ChristopherBackground: People in the rural and remote areas often have disparities in access to services and specific challenges when called upon to provide care. In order to plan and resource palliative care services, it is important to know what levels of service are available and what are the perceived unmet needs of caregivers for people at the end of life. Purpose: To examine and compare urban and rural palliative care service availability and patterns of care from randomised, population-based surveys of caregivers of people at the end of life. Methods: Survey responses on the death of ‘someone close’ from 23,588 interviews of South Australians conducted between 2001 and 2007 are analysed exploring palliative care service availability, caregiving provided, and characteristics of the deceased and caregivers. Results: There was no difference in reported rates of accessing specialist palliative care services between rural and urban respondents (in unadjusted and adjusted analyses) nor did the proportion of people for whom cancer was their life-limiting illness. There was greater reliance on friends than first degree relatives in hands-on care provided at the end of life in rural settings. The rates of reported need for more support did not differ between urban and rural respondents for caregivers of people at the end of life. Conclusion Use of palliative care services was similar for rural and urban caregivers for someone close at the end of life with similar levels of met and unmet needs.