Preferences for support services among adolescents and young adults with cancer or a blood disorder: a discrete choice experiment.

BACKGROUND: Life-threatening illnesses in young people are traumatic for patients and their families. Support services can help patients and families deal with various non-medical impacts of diagnosis, disease and treatment. The aim of this study was to determine which types of support are most valued by adolescents and young adults (AYA) with cancer or blood disorders and their families. METHOD: A discrete choice experiment (DCE). Separate experiments were conducted with AYA and their carers. RESULTS: Completed surveys were returned by 83 patients and 78 carers. AYA preferred emotional support for themselves (either by counsellors and/or peers), emotional support for their family, financial support and assistance returning to school/work over services relating to cultural and spiritual needs. Covariate analysis indicated female AYA were more likely than males to prefer emotional support, while males were more likely to prefer assistance returning to work/school. Carers preferred emotional support for their AYA and assistance returning to school/work. Like AYA, they were indifferent about services relating to cultural and spiritual needs. CONCLUSION: Providing the types of support services that people prefer should maximise effectiveness. This study suggests that AYA patients require support services that included financial aid, assistance returning to work/study, emotional support for themselves and for their family.

An innovative method to accommodate Chinese medicine pattern diagnosis within the framework of evidence-based medical research.

Pattern diagnosis is an integral aspect of Chinese medicine (CM). CM differentiates biomedical diseases into patterns, based upon the patient's symptoms and signs. Pattern identification (PI) is used to diagnose, direct the treatment principle and determine the treatment protocol. Most CM research has used fixed formula treatments for Western-defined diseases with outcomes measured using objective biomedical markers. This article presents an innovative method used in a randomised controlled pilot study using acupuncture for participants with hepatitis C virus. Each participant's CM patterns were identified and quantified at baseline which directed the treatment protocol for the treatment group. Data identified that while each participant expressed different patterns at baseline all participants displayed multiple patterns. Six patterns showed some expression by all 16 participants; Liver (Gan) yin vacuity expressing a group aggregate mean percentage of 47.2, binding depression of Liver qi 46.9, and Liver Kidney (Shen) yin vacuity 45.1. Further sub category gender grouping revealed that pattern ranking changed with gender; Liver yin vacuity (male 53.4%, female 51.93%), binding depression of Liver qi (male 50.0%, female 42.86%) and Liver Kidney yin vacuity (male 42.9%, female 47.96%). The quantification of CM patterns described in this article permitted statistical evaluation of presenting CM patterns. Although this methodology is in its infancy it may have potential use in the integration of PI with rigorous evidence based clinical research. Biomedical markers often do not relate to symptom/signs and therefore this innovative measure may offer an additional CM evaluation methodology and further CM PI understanding.

A novel approach to evaluate Traditional Chinese Medicine treatment outcomes using pattern identification.

INTRODUCTION: Traditional Chinese Medicine (TCM), a modern interpretation of Chinese medicine, developed in the 1950s. It differentiates biomedical diseases into patterns. Each pattern comprises symptom/signs that have their own unique treatment protocol. Most TCM research has used fixed formula treatments for Western-defined diseases with outcomes often measured using objective biomedical markers. More recently, a number of trials have attempted to accommodate TCM clinical practice within the framework of rigorous evidence-based medical research. The aim of this article is to describe a novel outcome measure based on TCM patterns that was used in a pilot study for people with hepatitis C virus (HCV). METHODS: Sixteen (16) participants with HCV were enrolled in a randomized, controlled pilot study and allocated to a treatment or control group. TCM pattern diagnosis was obtained at baseline and used to guide acupuncture treatment for the treatment group. Each individual's primary, secondary, and tertiary TCM patterns were identified, which involved the systematic evaluation of the participant's information against the TCM patterns and conversion of the pattern to a percentage. Baseline and postintervention percentages for the three TCM patterns for the two groups were compared to assess change. RESULTS: There was a significant mean percentage decrease in pattern expression at week 12 compared to baseline for the secondary and tertiary patterns of the treatment group (56.3% versus 47.5%; p = 0.045 and 48.1% versus 33.6%; p = 0.037, respectively). No significant change was found for the primary, secondary, or tertiary patterns for the control group or for the primary pattern associated with the treatment group. CONCLUSIONS: The quantification of TCM patterns in this study permitted statistical evaluation of TCM pattern change. Previously, TCM pattern identification had only been used as a basis for developing the treatment protocol in clinical trials. This is the first time it has been employed as a novel outcome measure.

Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder.

PURPOSE: To validate two health-related quality of life (HRQOL) measures, the PedsQL Generic Core and Cancer Module adolescent forms (13-18 years), after modification for 16-25-year-old adolescents and young adults (AYA) with cancer or a blood disorder. METHODS: AYA patients and nominated proxies were recruited from three Sydney hospitals. Modified forms were administered by telephone or in clinics/wards. Analyses included correlations, factor analysis, and analysis of variance of known-groups (defined by the Memorial Symptom Assessment Scale). RESULTS: Eighty-eight patients and 79 proxies completed questionnaires. Factor structures consistent with those of the unmodified forms confirmed construct validity. Cronbach's alpha ranged 0.81-0.98. Inter-scale correlations were as hypothesized, confirming discriminant validity. Statistically significant differences between groups with mild, moderate, and severe symptoms (P < 0.05) confirmed clinical validity. CONCLUSION: These modified forms provide reliable and valid measures of HRQOL in AYA with cancer or a blood disorder, suitable for clinical trials, research, and practice.

Use of pro re nata medications in acute inpatient care.

OBJECTIVES: Available evidence suggests that the use of 'as needed' (PRN; from the Latin pro re nata: for an occasion that has arisen) medications has remained a standard aspect of treatment in acute inpatient mental health units over a number of years despite lack of evidence from controlled clinical trials. The practice is one in which doctors and nurses are interdependent; that is, while doctors prescribe the medications, professional nurses are the ones who make the clinical decisions to administer them. The aim of the present study was to provide a detailed description of the circumstances surrounding the use of PRN medications across four inpatient units in Sydney. METHODS: The medical records of all patients admitted for >24h during a 2 month period were retrospectively audited for details regarding prescriptions and administrations of PRN medications. RESULTS: A total of 420 records were reviewed, producing a total of 3868 PRN medication administrations. Ninety-seven per cent of all patients were prescribed PRN medications and 93.8% were prescribed regular medications. The most frequently prescribed medications were second-generation antipsychotics for regular use along with benzodiazepine for PRN use. Nearly 84% of patients received at least one PRN medication during their admission, while patients diagnosed with personality disorder received more PRNs per day. The most common reason for PRN administration was patient agitation. The results indicated poor documentation in the prescription and documentation of PRN administrations. Also, the findings show that a small subset of the patients (5%) received >30% of all PRN medications. CONCLUSION: PRN medication use has endured as standard practice and the results of the present study are consistent with the reported frequency of use increasing slightly over the years. The combination of second-generation antipsychotics as regular medications and benzodiazepines for PRN medication is consistent with recommended treatment guidelines. The small subset of patients who were overrepresented in the PRN administrations is noteworthy.

Nutrition intervention using an eicosapentaenoic acid (EPA)-containing supplement in patients with advanced colorectal cancer. Effects on nutritional and inflammatory status: a phase II trial.

GOALS: The aim of the study was to assess the impact of an eicosapentanoic acid-containing protein and energy dense oral nutritional supplement (EPA-ONS) on nutritional and inflammatory status, quality of life (QOL), plasma phospholipids (PPL) and cytokine profile, tolerance of irinotecan-containing chemotherapy and EPA-ONS in patients with advanced colorectal cancer (CRC) receiving chemotherapy. MATERIALS AND METHODS: Patients with advanced CRC having one prior chemotherapy regimen received 480 ml of EPA-ONS daily for 3 weeks before commencing chemotherapy with folinic acid, 5-fluorouracil, irinotecan (FOLFIRI), and continued for 3 cycles of treatment (9 weeks). All assessments including weight, body composition, C-reactive protein (CRP), QOL, dietary intake, PPL and cytokine analyses were performed at baseline, 3 and 9 weeks. RESULTS: Twenty-three patients were enrolled, 20 completed 3 weeks, and 15 completed 9 weeks. The mean EPA-ONS intake was 1.7 tetrapaks (408 ml) daily. There was a significant increase in mean weight (2.5 kg) at 3 weeks (p=0.03). Lean body mass (LBM) was maintained. Protein and energy intake significantly decreased after the commencement of chemotherapy (protein p=0.003, energy p=0.02). There was a significant increase in energy levels (p=0.03), whilst all other QOL measures were maintained. PPL EPA levels increased significantly over the first 3 weeks. Mean CRP increased by 14.9 mg/L over the first 3 weeks (p=0.004), but decreased to baseline levels by the end of the trial. There was a significant correlation between plasma IL-6 and IL-10 concentrations and survival, and between IL-12 and toxicity. CONCLUSION: Dietary counseling and the provision of EPA-ONS may result in maintenance of nutritional status and QOL, however randomized trials are required to evaluate the impact of EPA on toxicity from chemotherapy.

Serologic responses of Barbary sheep (Ammotragus lervia), Indian antelope (Antilope cervicapra), wallaroos (Macropus robustus), and chimpanzees (Pan troglodytes) to an inactivated encephalomyocarditis virus vaccine.

Encephalomyocarditis virus (EMCV) is a picornavirus with a worldwide distribution, capable of infecting a wide range of species. Episodes of EMCV-associated mortality have been reported in zoos and national parks around the world, including sporadic cases at Taronga Zoo, Sydney. An inactivated EMCV vaccine was evaluated by inoculating Barbary sheep (Ammotragus lervia), Indian antelope (Antilope cervicapra), Eastern wallaroos (Macropus robustus), and chimpanzees (Pan troglodytes). A proportion of the vaccinated ungulates were administered a second vaccination 4 wk after the initial dose. Neutralizing antibody titers were monitored for a period of 12 mo. One month after vaccination, all vaccinated groups had developed significant antibody titers that persisted for at least 6 mo. Animals receiving two doses of vaccine had higher titers 3, 6, and 12 mo after the initial vaccination compared with animals receiving a single vaccine dose.