Health services research
Patient outcomes following the use of the parenteral nutrition solution OliClinomel: A clinical audit at Royal Prince Alfred Hospital
David Storey1, Sharon Lamb2, Lynn Jones1, Nicole Segaert1, Rachelle Ryan2, Suzie Ferrie2, Jane Young.
- Division of Surgery, Royal Prince Alfred Hospital
- Department of Nutrition & Dietetics, Royal Prince Alfred Hospital
Total parenteral nutrition (TPN) is used commonly in all major hospitals for patients unable to receive nutrition via the oral or enteral route. At many sites, the formulation of TPN product is tailored to the individual patient, but there is little research to support the necessity of the complex approach. This study will provide descriptive information about the frequency and type of adverse events encountered by a sample of patients that were treated with a single TPN solution, OliClinomel, without any attempt to modify or tailor the components. A medical record and database audit will be conducted with a cohort of 300 patients that received OliClinomel at Royal Prince Alfred Hospital.
The aim is to provide a safety profile on a large group of unselected patients receiving untailored TPN, that can be compared to historical and published data and used as a benchmark for other audits. Univariate and multivariate analyses will also be undertaken to identify the patients most at risk of adverse outcomes and to identify the patient group/s for which it may be more appropriate to administer individually tailored parenteral nutrition.
Status: Report completed. Manuscript in preparation.
Randomised evaluation of the supportive care intervention “CONNECT” for people following surgery for colorectal cancer
James Harrison, Jane Young, Michael Solomon, Phyllis Butow, Robyn Secomb1, Lindy Masya
- Department of Colorectal Surgery, Royal Prince Alfred Hospital
Internationally cancer policy now recognises the importance of addressing patients’ supportive care needs as well as clinical needs. Evidence suggests however that people with cancer can have a range of unmet supportive care needs. Within cancer services, there is increasing interest in needs assessment and specifically the measurement of unmet need to ensure health systems are responsive to patients’ needs.
The CONNECT telephone intervention, delivered by a nurse, has been designed to reduce colorectal cancer patients’ unmet needs following discharge from hospital after surgery. The content of each call was standardised to address supportive care domains of unmet need. Patients were randomised to receive the telephone intervention or usual follow-up care. Outcomes of this study included unmet supportive care needs, quality of life (QoL) and health service utilisation. These were assessed at baseline then at 1, 3 and 6 months post-discharge. Process evaluation of the nurse intervention was also conducted.
39 participants were randomised to the intervention group and 36 to usual care. Of 87 eligible patients, 75 consented (86% consent rate). n=39 were randomised to CONNECT and n=36 to standard follow-up. There was a reduction in presentations to emergency departments (12%) and re-admission rates to hospital (10%) among intervention participants. These differences were not statistically significant. At six months, there were no significant differences between groups for unmet supportive care needs, however greater reductions in unmet need change scores, more than double, were noted for intervention group compared to a controls. Intervention group participants reported better quality of life compared to controls and the size of the difference between groups was clinically meaningful. CONNECT has shown promising indications on health system and patient outcomes. Despite non-significant differences between groups in relation to outcomes assessed, larger studies should be conducted to investigate CONNECT’s potential further.
Published: Diseases of the Colon and Rectum 2011; 54: 622-631
CONNECT: A randomised multi-centre trial of centralised remote access cancer care coordination to improve processes and outcomes of care
Jane Young, Phyllis Butow, Michael Solomon, Glenn Salkeld, Kate White1, Jennifer Walsh, James Harrison, Ivana Durcinoska, Robyn Secomb
- Faculty of Nursing and Midwifery, University of Sydney
Patients with colorectal cancer are often required to navigate a complex system involving a diverse range of medical, nursing and allied health practitioners in both hospital and community settings. Improving care coordination, patients’ experience of care and patient outcomes are widely recognised as priorities for the improvement of cancer services.
Therefore, the objective of this multi-centre trial is to assess the effectiveness of a centralised telephone-based ‘remote access’ care coordination service delivered by a specialist cancer nurse to improve care coordination and patient outcomes in the six months following colorectal cancer surgery.
Ethics and research governance approvals for this study have been obtained and patient recruitment has been completed. Twenty-three public and private hospitals throughout NSW and ACT including Sydney, Wagga Wagga, Newcastle, Dubbo, Orange, Port Macquarie, Lismore, Coffs Harbour and Canberra recruited for the study. Participating patients were randomly allocated into the ‘intervention’ group and received the telephone care coordination service after they were discharged from hospital, or the ‘control’ group and received usual care. All participants completed a series of questionnaires relating to quality of life, psychological distress, unmet supportive care needs, care coordination and health service utilisation. A total of 775 patients were enrolled in the study.
Status: Data analysis & Manuscript in preparation
Measuring cancer care coordination: development of questionnaires for patients and carers
Jane Young, Jennifer Walsh, Phyllis Butow, Michael Solomon
International and Australian cancer strategic plans identify the coordination of care as a priority area for improvement. In order to be able to measure improvements in care co-ordination, this concept must first be clearly defined and then measured accurately. Currently, there are no validated measures of cancer care coordination. Patients and their carers are ideally placed to rate the adequacy of care coordination. Therefore, this study aimed to develop questionnaires for patients and carers, to define their underlying factor structures and to assess their psychometric properties.
Questionnaire items were developed on the basis of literature review, focus groups and interviews with cancer patients, carers and clinicians. Draft questionnaires were completed by adult patients in metropolitan, regional and rural areas of NSW who had been treated for any form of cancer between 3 and 12 months previously. Patients’ carers completed a carer version. Exploratory factor analysis was used to define the underlying factor structure of the instruments. Internal consistency was assessed with Cronbach’s alpha. Test-retest reliability was assessed using weighted kappa for individual items and the intra-cluster correlation coefficient (ICC) for scales.
Draft questionnaires were completed by 235 patients and 118 carers. After elimination of unreliable and redundant items, the patient questionnaire comprised 26 items, forming four scales: ‘organisation of care’, ‘supportive care’, ‘understanding of treatment pathway’ and ‘distance from services’ that accounted for 94% of the variance. Internal consistency was high (Cronbach’s alpha 0.70-0.87) and test-retest reliability was good. The carer version comprised 27 items that formed four scales: ‘being informed’, ‘organisation of care’, ‘knowledge about treatment’ and ‘coping’. These factors accounted for 82% of the variance.
This study is the first step in the development of psychometrically robust measures of cancer care coordination that could be used in future needs assessment and intervention studies.
Published: BioMedCentral Cancer 2011; 11:298
Clinician preferences in treatment of trigeminal neuralgia
Benjamin Jonker, Jane Young, Michael Solomon
Trigeminal neuralgia is a condition causing severe facial pain which can be controlled by surgery, focused radiation and by medication. Each treatment has it's own side effect profile and risks. We are seeking to understand better how clinicians currently make decisions in this area by conducting a survey of neurologists and neurosurgeons. The purpose is to understand whether there is currently equipoise between different treatment types, which outcomes are considered most important, and finally what barriers there might be to a randomized trial.
Status: In progress
Systematic review of interventions to improve patient participation in the treatment process for culturally and linguistically diverse cancer patients
Aisha Harun1, James Harrison, Jane Young
- Medical student from Johns Hopkins who is completing a Fulbright Research Fellowship with SOuRCe
Disparities in cancer outcomes for people from culturally and linguistically diverse (CALD) groups are well known. Improving CALD patients’ active participation in treatment processes holds potential to improve outcomes, but little is known of effective strategies to facilitate this. This systematic review investigated interventions to improve three aspects of participation in cancer care among CALD groups, namely involvement in decision-making, communication with health providers and treatment adherence.
A comprehensive search of electronic bibliographic databases was conducted to identify intervention studies which reported outcomes relevant to patient participation for CALD groups. Two reviewers independently critically appraised studies and abstracted data.
Of 10,278 potential articles, seven met the inclusion criteria, including three randomised controlled, three non-randomised and one mixed-method experimental designed studies. Interventions included the use of patent navigators, videos and decision aids. The impact on patient participation was varied. The effect of a decision aid and patient navigator interventions on communication with health providers was positive. Whilst the use of a decisions aid successfully facilitated shared decision-making and patients’ perception of treatment adherence, the use of patient navigators was ineffective. A computer support system was found to improve general patient participation however little clarification of what this involved was provided.
This systematic review identified few rigorous evaluations of interventions to improve treatment participation for CALD people with cancer, highlighting the lack of a robust evidence base to improve this crucial aspect of care. The development and evaluation of interventions for diverse populations remains a priority.
Status: In press - Asia Pacific Journal of Clinical Oncology
The unmet needs of partners and caregivers of adult diagnosed with cancer: A systematic review
Sylvie Lambert1, James Harrison, Ellen Smith2, Billie Bonevski2, Mariko Carey3, Catalina Lawsin4, Chris Paul5 and Afaf Girgis1.
- Translational Cancer Research Unit, Ingham Institute for Applied Medical Research
- University of Newcastle & Hunter Medical Research Institute
- Hunter Medical Research Institute
- The University of Sydney
- Priority Research Centre for Health Behaviour,The University of Newcastle
Partners and caregivers are typically patient’s primary source of support and are also deeply affected by the cancer diagnosis. Recognition of the impact of cancer on partners and caregivers has prompted efforts to document their unmet supportive care needs (unmet needs) to inform the implementation of targeted and effective cancer care services.
This systematic review aimed to: 1) quantify the prevalence of unmet supportive care needs reported by partners and caregivers of adults with cancer, 2) categorise partners’ and caregivers’ unmet needs by domain, and 3) identify the main variables associated with level of unmet needs. A systematic review of papers identified through electronic databases (Medline, CINHAL, CancerLit, AMED, EMBASE and PsychInfo ) was conducted.
Status: Manuscript under editorial review
Expert consensus on MRI and clinical factors important for consideration for pelvic exnteration surgery
Wendy Brown1, James Harrison, Lindy Masya, Eddie Myers2, Jane Young, Michael Solomon
- Department of Radiation Oncology, Royal Prince Alfred Hospital
- Galway University Hospitals, Ireland.
This study aims to identify which radiological and patient related factors are most useful when assessing patients with recurrent rectal cancer or advanced primary rectal cancer for pelvic exentaeration surgery.
A Delphi process will be used to consolidate, standardise and create a list of criteria that can be used to help the surgeon decide on whether the patient is eligible for pelvic exenteration surgery. International expert surgeons with clinical experience and an academic track record in the topic of pelvic exenteration surgery for recurrent rectal and advanced primary rectal cancer will be selected via the snowball sampling method.
Each surgeon will be sent a Round 1 Questionnaire that lists 40 MRI factors and 60 clinical factors. Surgeons will be asked to indicate the importance of each factor in deciding whether a patient is suitable for pelvic exenteration and in addition, in the case of MRI factors, whether they determine the surgical approach taken.
A Round 2 Questionnaire will then be sent that reports the findings from the Round 1 Questionnaire. This enables participants to complete the survey again, reconsidering their answers in view of the opinions of the group. This attempts to reach a consensus expert opinion.
Status: Data collection
Development of communication skills training for nurses delivering telephone-based supportive care interventions for people with cancer or their families
Joanne Shaw, Jane Young
This research aimed to (1)identify the communication skills training needs of nurses conducting telephone-based supportive care interventions for people with cancer or their families (2) compare previously published communication skills assessment measures to determine which tool (if any) is most applicable to assessment of telephone-based communication and if necessary, develop a telephone-communication specific coding system (3) develop and pilot a standardised training methodology for telephone communication skills training. Communication skills training needs of nurses has been identified based on analysis of a series of telephone calls by nurses delivering supportive care to colorectal patients post-surgery
Status: Analysis of calls is ongoing (due to be completed March 2012)