Do Health-Care Professionals Really Understand the Role of Occupational Therapy in Hospice Care?

BACKGROUND:: The distinct value of occupational therapy (OT) in end-of-life care is to facilitate quality of life for clients and their caregivers through engagement in occupations during the clients' remaining days. The purpose of this study was to explore health-care professionals' perceptions and knowledge regarding the role of OT in hospice care and to better understand why OT may be underutilized in this setting. PARTICIPANTS:: A total of 104 professionals working in hospice care from 31 different states participated in this study. METHODS:: Electronic surveys were distributed to hospice agencies throughout the United States. DATA ANALYSIS:: Descriptive statistics was used to analyze quantitative data, and content analysis was used to identify patterns with qualitative data. Rigor was enhanced through peer-review, multiple coders, and triangulation. RESULTS:: The results of this study revealed that OT's role in hospice care is misunderstood, and OT services are underutilized. Five themes were identified regarding the underutilization of OT services: (1) lack of reimbursement, (2) timing of referral, (3) knowledge of the role of OT, (4) refusal of services by family members, and (5) lack of OT presence in this setting. CONCLUSION:: This study revealed that health-care professionals do believe that OTs are vital members of the hospice care team. However, many recipients of hospice care are not receiving OT. More consistent referrals to OT may better ensure that the terminally ill are able to attain end-of-life goals and live their lives to the fullest, regardless of life expectancy.

A web-based intervention (RESTORE) to support self-management of cancer-related fatigue following primary cancer treatment: a multi-centre proof of concept randomised controlled trial.

PURPOSE: Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treatment. RESTORE is the first web-based resource designed to enhance self-efficacy to manage CRF following curative-intent treatment. The aim of this study is to test the proof of concept and inform the design of an effectiveness trial. METHODS: A multi-centre parallel-group two-armed (1:1) exploratory randomised controlled trial (RCT) with qualitative process evaluation was employed in the study. Participants (≥18 years; ≤5 years post treatment with moderate to severe fatigue) were recruited and randomly assigned to RESTORE or a leaflet. Feasibility and acceptability were measured by recruitment, attrition, intervention adherence, completion of outcome measures and process evaluation. Change in self-efficacy to manage CRF was also explored. Outcome measures were completed at baseline (T0), 6 weeks (T1) and 12 weeks (T2). Data were analysed using mixed-effects linear regression and directed content analysis. RESULTS: One hundred and sixty-three people participated in the trial and 19 in the process evaluation. The intervention was feasible (39 % of eligible patients consented) and acceptable (attrition rate 36 %). There was evidence of higher fatigue self-efficacy at T1 in the intervention group vs comparator (mean difference 0.51 [-0.08 to 1.11]), though the difference in groups decreased by 12 weeks. Time since diagnosis influenced perceived usefulness of the intervention. Modifications were suggested. CONCLUSION: Proof of concept was achieved. The RESTORE intervention should be subject to a definitive trial with some adjustments. Provision of an effective supportive resource would empower cancer survivors to manage CRF after treatment completion. TRIAL REGISTRATION: ISRCTN67521059.

The JACS prospective cohort study of newly diagnosed women with breast cancer investigating joint and muscle pain, aches, and stiffness: pain and quality of life after primary surgery and before adjuvant treatment.

BACKGROUND: Breast cancer affects one in eight UK women during their lifetime: many of these women now receive adjuvant chemotherapy and hormone therapy. Joint and muscle pains, aches, and stiffness are common but the natural history, aetiology and impact of these symptoms are unknown. A cohort study of newly diagnosed women with primary breast cancer was established to explore this. In this paper we present study methods and sample characteristics, describe participants' experience of musculoskeletal pain at baseline interview, and explore its impact on quality of life. METHODS: Women with non-metastatic breast cancer were recruited following primary surgery into a multi-centre cohort study. They received questionnaires by post five times (baseline, 3, 6 , 9 and 12 months) to investigate prevalence, severity, location and correlates of musculoskeletal pain, and impact on quality-of-life. Pain was measured by the Nordic musculoskeletal questionnaire, the Brief Pain Inventory, and MSK-specific questions, and quality of life by the SF-36 and FACIT scales. RESULTS: 543 women (mean age 57 years, range 28-87, 64% postmenopausal) were recruited following surgery for primary breast cancer from breast cancer clinics in eight hospitals. Fifteen per cent of the eligible cohort was missed; 28% declined to participate. Joint or muscle aches, pains or stiffness were reported by 69% women with 28% specifically reporting joint pain/aches/stiffness. Quality of life, as measured by the FACT-B and adjusted for age, depression, surgery and analgesic use, is significantly worse in all domains in those with musculoskeletal problems than those without. CONCLUSIONS: Our findings highlights the importance of a better understanding of these symptoms and their impact on the lives of women with primary breast cancer so that healthcare professionals are better equipped to support patients and to provide accurate information to inform treatment decisions. Further papers from this study will address these issues.

Lymphogranuloma venereum diagnoses among men who have sex with men in the U.K.: interpreting a cross-sectional study using an epidemic phase-specific framework.

OBJECTIVES: To investigate the drivers behind the epidemic expansion of lymphogranuloma venereum (LGV) cases in late 2009 to help inform infection control. METHODS: An epidemic curve of all LGV diagnoses between 2003 and mid-2012 was plotted and divided into the initial detection period, and endemic, growth and hyperendemic phases. Detailed clinical and behavioural data were collected and logistic regression was used to compare the characteristics of diagnoses made during the growth and endemic phases. RESULTS: Between April 2003 and June 2012, 2138 cases of LGV were diagnosed. Enhanced surveillance data were available for 1370 of whom 1353 were men who have sex with men (MSM). 98% of MSM presented with proctitis, 82% were HIV positive, 20% were hepatitis C virus (HCV) antibody positive, and 67% lived in London. Growth phase cases (n=488) were more likely to report meeting sexual contacts at sex parties (11% vs. 6%, p=0.014), unprotected receptive or insertive oral intercourse (93% vs. 86%, p=0.001; 92% vs. 85%, p=0.001) and sharing sex toys (8% vs 4%; p=0.011), and to be diagnosed HIV positive (86% vs. 80%; p=0.014), than endemic phase cases (n=423). Unprotected receptive anal intercourse was equally likely to be reported in both phases (71% vs. 73%). After adjustment, cases in the growth phase were more likely to meet new contacts at sex parties (p=0.031) and be HIV positive (p=0.045). CONCLUSIONS: Rapid epidemic growth coincided with an intensification of unprotected sexual activity among a core population of HIV-positive MSM. Efforts to develop innovative interventions for this hard-to-reach population are needed.

Virological self-sampling to monitor influenza antiviral susceptibility in a community cohort.

OBJECTIVE: To perform antiviral susceptibility monitoring of treated individuals in the community during the 2009 influenza A(H1N1) pandemic in England. PATIENTS AND METHODS: Between 200 and 400 patients were enrolled daily through the National Pandemic Flu Service (NPFS) and issued with a self-sampling kit. Initially, only persons aged 16 and over were eligible, but from 12 November (week 45), self-sampling was extended to include school-age children (5 years and older). All samples received were screened for influenza A(H1N1)pdm09 as well as seasonal influenza [A(H1N1), A(H3N2) and influenza B] by a combination of RT-PCR and virus isolation methods. Influenza A(H1N1)pdm09 RT-PCR-positive samples were screened for the oseltamivir resistance-inducing H275Y substitution, and a subset of samples also underwent phenotypic antiviral susceptibility testing by enzyme inhibition assay. RESULTS: We were able to detect virus by RT-PCR in self-taken samples and recovered infectious virus enabling further virological characterization. The majority of influenza A(H1N1)pdm09 RT-PCR-positive NPFS samples (n = 1273) were taken after oseltamivir treatment had begun. No reduction in phenotypic susceptibility to neuraminidase inhibitors was detected, but five cases with minority quasi-species of oseltamivir-resistant virus (an H275Y amino acid substitution in neuraminidase) were detected. CONCLUSIONS: Self-sampling is a useful tool for community surveillance, particularly for the follow-up of drug-treated patients. The virological study of self-taken samples from the NPFS provided a unique opportunity to evaluate the emergence of oseltamivir resistance in treated individuals with mild illness in the community, a target population that may not be captured by traditional sentinel surveillance schemes.

The concept of "the will to thrive" in mental health.

Mental health nursing is focused on patients moving along the continuum between failing and thriving in terms of emotional functioning. This differs dramatically from a medical model of disease/cure. A variety of nursing theorists have both directly and indirectly identified the importance of patient's "will to thrive" although this term has never been used. Peplau spoke of self-efficacy and self-esteem. Barrett's model focuses on the patient's participation in their own recovery as a key component. This article explores the concept, akin to failure to thrive in infants, of the will to thrive in the chronically ill and its role in assessment and nursing intervention. A particular emphasis on the importance of patient responsibility is identified as vital to the process of true change.

Has estimation of numbers of cases of pandemic influenza H1N1 in England in 2009 provided a useful measure of the occurrence of disease?

BACKGROUND: Surveillance indicators of influenza activity have generally provided robust comparative trend data for England. These indicators became less reliable, however, for monitoring trends in activity, or comparisons with previous years, during the influenza pandemic in 2009 because of changes in the perception of risk and changes in the systems of healthcare delivery. An approach was developed to estimate the number of cases of influenza-like illness (ILI) occurring because of infection with pandemic influenza virus. METHODS AND FINDINGS: The number of cases was estimated each week in England on the basis of total number of patients consulting healthcare services with ILI; estimates of the proportion of individuals in the community experiencing an ILI-seeking health care; and the proportion of these positive on laboratory testing. Almost 800,000 cases (range 375,000-1·6 million) of symptomatic ILI cases were estimated to have occurred over the course of the two waves of pandemic activity in England. More cases were estimated to have occurred in the second wave than in the first. CONCLUSIONS: These results underestimate the total number of infections as they do not include asymptomatic infections nor those with mild illness not meeting the definition of a case of ILI. Nevertheless, the case number estimates provide a useful indicator of the trend in influenza activity and weekly data were extensively used in media reports. Although surveillance methods differ between countries, the approach of synthesising available data sources to produce an overall estimate of case numbers could be applied more widely to provide comparative data.

Variations in the epidemiology of primary, secondary and early latent syphilis, England and Wales: 1999 to 2008.

OBJECTIVE: To investigate factors associated with variations in diagnoses of primary, secondary and early latent syphilis in England and Wales. METHODS: Data were derived from two sources: diagnoses made in genitourinary medicine clinics reported on form KC60, and information collected through National Enhanced Syphilis Surveillance (NESS). Multinomial regression modelling was used for data analysis. RESULTS: Between 1999 and 2008, 12,021 NESS reports were received, 54% of KC60 reports. The dominant profile of the epidemic was one of white men who have sex with men aged 35-44, often co-infected with HIV, centred in larger cities. During this period, the proportion of primary cases increased over time, while the proportion of secondary cases fell. Primary cases exceeded secondary cases by 2004. The proportion of early latent cases remained relatively stable over time and tended to be lower than that of primary and secondary infection. Patients who attended because they had symptoms of infection, had been identified through partner notification, were HIV positive, and were UK born were more likely to present with primary or secondary infection than with early latent infection. A higher proportion of early latent cases were seen among patients who were Asian, had contacted sexual partners through saunas, bars and the internet, had untraceable partners, and had acquired infection in Manchester. CONCLUSIONS: The continuing syphilis epidemic indicates that control has only been partially effective, with ongoing transmission being sustained. Intensive and targeted efforts delivered locally are required to interrupt further transmission.

Monitoring the emergence of community transmission of influenza A/H1N1 2009 in England: a cross sectional opportunistic survey of self sampled telephone callers to NHS Direct.

OBJECTIVE: To evaluate ascertainment of the onset of community transmission of influenza A/H1N1 2009 (swine flu) in England during the earliest phase of the epidemic through comparing data from two surveillance systems. DESIGN: Cross sectional opportunistic survey. STUDY SAMPLES: Results from self samples by consenting patients who had called the NHS Direct telephone health line with cold or flu symptoms, or both, and results from Health Protection Agency (HPA) regional microbiology laboratories on patients tested according to the clinical algorithm for the management of suspected cases of swine flu. SETTING: Six regions of England between 24 May and 30 June 2009. MAIN OUTCOME MEASURE: Proportion of specimens with laboratory evidence of influenza A/H1N1 2009. RESULTS: Influenza A/H1N1 2009 infections were detected in 91 (7%) of the 1385 self sampled specimens tested. In addition, eight instances of influenza A/H3 infection and two cases of influenza B infection were detected. The weekly rate of change in the proportions of infected individuals according to self obtained samples closely matched the rate of increase in the proportions of infected people reported by HPA regional laboratories. Comparing the data from both systems showed that local community transmission was occurring in London and the West Midlands once HPA regional laboratories began detecting 100 or more influenza A/H1N1 2009 infections, or a proportion positive of over 20% of those tested, each week. CONCLUSIONS: Trends in the proportion of patients with influenza A/H1N1 2009 across regions detected through clinical management were mirrored by the proportion of NHS Direct callers with laboratory confirmed infection. The initial concern that information from HPA regional laboratory reports would be too limited because it was based on testing patients with either travel associated risk or who were contacts of other influenza cases was unfounded. Reports from HPA regional laboratories could be used to recognise the extent to which local community transmission was occurring.