How integrated are neurology and palliative care services? Results of a multicentre mapping exercise.

BACKGROUND: Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. METHODS: The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. RESULTS: Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson's Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9-88 MND, 3-25 Parkinsonism, and 0-5 MS). CONCLUSIONS: This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.

Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure.

BACKGROUND: Breathlessness is a common, distressing symptom in patients with advanced disease. With increasing focus on home death for patients, carers are expected to support breathless people at home. Little is known about how carers experience breathlessness and the differences in caring for someone with breathlessness and malignant or non-malignant disease. AIM: To compare experiences of caring for a breathless patient with lung cancer versus those with heart failure and to examine factors associated with caregiver burden and positive caring experiences. DESIGN: Cross-sectional survey of caregivers of breathless patients. SETTING/PARTICIPANTS: Participants were recruited from two London hospitals. INCLUSION CRITERIA: caregivers of patients with breathlessness and heart failure or lung cancer. Measures included self-completion of Short Form version of Zarit Burden Interview, a 'positive caring experiences' scale and Palliative Care Outcome Scale. We compared caregiver reports between heart failure and lung cancer. Multiple regression analyses were used to examine factors related to burden and positive caring experiences. RESULTS: In total, 51 heart failure and 50 lung cancer caregivers were recruited. Most were spouses (72%) and women (80%). Severity of patient breathlessness was similar in both groups. Caregiver concerns were mostly similar across conditions. Higher burden was associated with poorer 'quality of patient care' and worse carer psychological health (R (2) = 0.37, F = 12.2, p = 0.01). Caregiver depression and looking after more breathless patients were associated with fewer positive caring experiences (R (2) = 0.15, F = 4.4, p = 0.04). CONCLUSIONS: Those who care for breathless patients report high levels of unmet needs and burden, equally severe for heart failure and lung cancer caregivers. Caregivers of patients with more severe breathlessness report fewer positive caring experiences and should be targeted by services with increased support in managing this symptom.

Seeking Excellence in End of Life Care (SEE Care): A Multi-Centered Acute Hospitals Service Evaluation.

CONTEXT: A proportion of UK hospital inpatients have palliative care needs but do not access specialist services. OBJECTIVES: To contemporaneously evaluate the significance of unmet specialist palliative care needs within the hospital inpatient population. METHODS: Prospective multi-centered service evaluation was conducted through 4 snapshots across 4 acute NHS hospital trusts. All patients identified as dying in each hospital were included. Data extraction included symptom burden, medications and completion of care plans. RESULTS: End-of-life care plans were completed for 73%, symptom-focused prescribing present in 96%. Symptoms were not well managed for 22%, with 4% suffering moderate to severely. Specific intervention was triggered in 56% of patients, consisting of prescribing advice and holistic support. CONCLUSION: There are significant unmet specialist palliative care needs within the hospital inpatient population. Contemporaneous data collection coupled with an outreach approach helps palliative care services better understand the experiences of dying people, alongside where improvement is needed.

Fecal Microbiome, Metabolites, and Stem Cell Transplant Outcomes: A Single-Center Pilot Study.

BACKGROUND: Accumulating evidence suggests that the intestinal microbiome may dramatically affect the outcomes of hematopoietic stem cell transplant (HSCT) recipients. Providing 16S ribosomal RNA based microbiome characterization in a clinically actionable time frame is currently problematic. Thus, determination of microbial metabolites as surrogates for microbiome composition could offer practical biomarkers. METHODS: Longitudinal fecal specimens (n = 451) were collected from 44 patients before HSCT through 100 days after transplantation, as well as 1-time samples from healthy volunteers (n = 18) as controls. Microbiota composition was determined using 16S ribosomal RNA V4 sequencing. Fecal indole and butyrate levels were determined using liquid chromatography tandem mass spectrometry. RESULTS: Among HSCT recipients, both fecal indole and butyrate levels correlated with the Shannon diversity index at baseline (P = .02 and P = .002, respectively) and directly after transplantation (P = .006 and P < .001, respectively). Samples with high butyrate levels were enriched for Clostridiales, whereas samples containing high indole were also enriched for Bacteroidales. A lower Shannon diversity index at the time of engraftment was associated with increased incidence of acute intestinal graft-vs-host disease (iGVHD) (P = .02) and transplant-related deaths (P = .03). Although fecal metabolites were not associated with acute iGVHD or overall survival, patients contracting bloodstream infections within 30 days after transplantation had significantly lower levels of fecal butyrate (P = .03). CONCLUSIONS: Longitudinal analysis of fecal microbiome and metabolites after HSCT identified butyrate and indole as potential surrogate markers for microbial diversity and specific taxa. Further studies are needed to ascertain whether fecal metabolites can be used as biomarkers of acute iGVHD or bacteremia after HSCT.

Viral associated diarrhea in immunocompromised and cancer patients at a large comprehensive cancer center: a 10-year retrospective study.

BACKGROUND: Viral associated diarrhea (VAD) due to Norovirus (NV), Rotavirus (RV) and Adenovirus (AV) is common in immunocompromised and cancer patients. We sought to determine if the clinical characteristics, morbidity and seasonality of infection differed according to the type of enteric virus identified. METHODS: Cases of NV, RV and AV were identified in stool specimens submitted to the clinical microbiology laboratory between November 2005 and February 2015. Clinical characteristics of patients, potential risk factors and outcomes were compared. RESULTS: A total of 97 VAD cases were identified: NV (n = 49), RV (n = 34) and AV (n = 14). The majority of cases were in patients with leukemia and lymphoma. NV (59%), RV (74%) and AV (78%) were identified in hematopoietic stem cell transplant (HSCT) recipients; and in patients with graft versus host disease (GVHD): NV (34%), RV (46%) and AV (57%). Nine cases of NV were genotyped; all were due to genotype II. Nine of 49 (18%) cases of NV, 7 of 34 (20%) cases of RV and 2 of 14 (14%) cases of AV were considered to be health care acquired (HCA). In multivariate analysis, immunosuppression (OR 2.8 95% CI 1.26-6.60, p = .01) and neutropenia (OR 4.8 95% CI 1.27-18.5, p = .01) were identified as risk factors for NV diarrhea compared to RV and AV. CONCLUSIONS: In our study, agents responsible for VAD occurred year round but predominated in the winter time; caused prolonged illness and were frequently health care associated. Presentations were atypical in many cases without upper gastrointestinal symptoms such as nausea and vomiting.

End of life content in geriatric textbooks: what is the current situation?

BACKGROUND: Physicians caring for elderly people encounter death and dying more frequently than their colleagues in most other disciplines. Therefore we sought to examine the end-of-life content in popular geriatric textbooks and determine their usefulness in helping geriatricians manage patients at the end of their lives. METHODS: Five popular geriatric textbooks were chosen. Chapters on Alzheimer's disease, stroke, chronic heart failure, chronic obstructive pulmonary disease and lung cancer were examined because of their high mortality rates among the elderly patients. Text relevant to end-of-life care was highlighted. Two reviewers independently coded text into 10 pre specified domains and rated them for the presence of end-of-life information. Content was rated as absent, minimally helpful, or helpful. The proportion of helpful information was calculated. RESULTS: The textbook with the best end-of-life coverage contained 38% helpful information, the worst had only 15% helpful information. Minimally helpful information ranged from 24% to 50%. As much as 61% of the content in one textbook contained no helpful information at all. Of the ten domains, epidemiology, disease progression and prognostic factors were fairly well covered. Information on advance care planning, ethical issues, decision making and effects of death and dying on patient's family were generally lacking under the individual diseases though they were covered as general topics in other parts of the textbooks. All except one textbook dedicated a chapter to the care of the dying. CONCLUSION: This study showed that end-of-life content in geriatric textbooks differed significantly. Most of the textbooks lack good coverage on end-of-life care and more can be done to improve on this.

Chewing of betel, areca and tobacco: perceptions and knowledge regarding their role in head and neck cancers in an urban squatter settlement in Pakistan.

The link of betel, areca and chewable tobacco with head and neck cancers is clearly established. Fifty eight percent of the global head and neck cancers occur in South and Southeast Asia, where chewing of betel, areca and tobacco are common. This study was carried out to establish the pattern of use of Paan, Chaalia, Gutka, Niswar, Tumbaku and Naas among population of squatter settlement of Karachi and to determine the perceptions and knowledge regarding their role in the etiology of head and neck cancers. It was a cross-sectional study, performed at Bilal colony in Karachi. Through systematic sampling, 425 subjects [a male and female from a household] were interviewed with a structured questionnaire. Knowledge regarding etiology of head and neck cancers was classified in ordinals of "good", "some" and "poor", for each substance separately, while practices were classified into "daily user", "occasional user" and "never user". About 40% of the participants were chewing at least one item [betel, areca or tobacco products] on daily basis. This prevalence was 2.46 times higher among males than females and 1.39 times higher among adolescents than adults. At least 79% of the participants were classified as having poor knowledge about the carcinogenicity of each of these items. Knowledge increased with age and level of education. Health hazards of these items were poorly recognized and about 20% perceived at least one of these items to be beneficial. Positive attitudes were seen regarding the steps to curb the production, business and consumption of these substances. In conclusion, prevalence of chewing of betel, areca and tobacco among adults and adolescents is high. Deficiency in knowledge and wrong perception of favorable effect of chewing products is common. Besides curtailing the availability of chewing products, correct knowledge regarding its ill-effects should be inculcated among population to decrease the burden of head and neck cancers.

New models of self-management education for minority ethnic groups: pilot randomized trial of a story-sharing intervention.

OBJECTIVE: no model of self-management education or peer support has yet achieved widespread reach and acceptability with minority ethnic groups. We sought to refine and test a new complex intervention in diabetes education: informal story-sharing groups facilitated by bilingual health advocates. METHODS: pilot randomized trial with in-depth process evaluation in a socioeconomically deprived area. 157 people referred for diabetes education were randomized by concealed allocation to an intervention (story-sharing group in their own language) or control ('usual care' self-management education, through an interpreter if necessary) arm. Story-sharing groups were held in five ethnic languages and English (for African Caribbeans), and ran fortnightly for six months. Primary outcome was UKPDS (UK Prospective Diabetes Study) risk score. Secondary outcomes included attendance, HbA1c, well-being and enablement. Process measures included ethnographic observation, and qualitative interviews with staff and patients. RESULTS: some follow-up data were obtained on 87% of participants. There was no significant difference between intervention and control arms in biomedical outcomes. Attendance was 79% in the story-sharing arm and 35% in the control arm (p < 0.0001), and patient enablement scores were significantly higher (8.3 compared to 5.9, p < 0.005). The model was very popular with clinicians, managers and patients, which helped overcome numerous challenges to its successful embedding in a busy public sector diabetes service. CONCLUSION: people from minority ethnic groups in a socioeconomically deprived area were keen to attend informal story-sharing groups and felt empowered by them, but clinical outcomes were no better than with conventional education. Further research is needed to maximize the potential and evaluate the place of this appealing service model before it is introduced as a part of mainstream diabetes services.

Storylines of self-management: narratives of people with diabetes from a multiethnic inner city population.

OBJECTIVES: to analyse the narratives of people with diabetes to inform the design of culturally congruent self-management education programmes. METHODS: the study was based on quasi-naturalistic story-gathering; i.e. making real-time field notes of stories shared spontaneously in diabetes self-management education groups in a socioeconomically deprived London borough. Eighty-two adults aged 25-86, from six minority ethnic groups who were in the intervention arm of a randomized controlled trial of story-sharing, participated. Stories were translated in real time by the facilitator or group members. Ethnographic field notes were transcribed, and analysed thematically (to identify self-management domains raised by participants) and interpretively for over-arching storylines (i.e. considering how self-management domains were contextualized and made meaningful in personal narratives). Analysis was informed by both biomedical and sociological theories of self-management. RESULTS: people with diabetes identified seven self-management domains: knowledge; diet; exercise; medication; foot care; self-monitoring; and attending check-ups. Interpretive analysis revealed eight illness storylines within which these practical issues acquired social meaning and moral worth: becoming sick; rebuilding spoiled identity; becoming a practitioner of self-management; living a disciplined and balanced life; mobilizing a care network; navigating and negotiating in the health care system; managing the micro-morality of self-management 'choices'; and taking collective action. CONCLUSION: living with diabetes involves both medically recommended behaviours and complex biographical work to make sense of and cope with illness. Self-management education programmes should take closer account of over-arching storylines that pattern experience of chronic illness and recognize that some elements of self-management knowledge cannot be pre-specified in a structured curriculum.

The role of advocacy and interpretation services in the delivery of quality healthcare to diverse minority communities in London, United Kingdom.

Inequalities in access to appropriate and acceptable healthcare contributes to a pattern of poorer health status, reduced life expectancy and greater dissatisfaction with healthcare amongst people from Black and minority ethnic communities (BME). Language acts as a further barrier to access. The development of bilingual advocacy fuses two key functions--interpretation and advocacy--to ensure that people from BME communities are able to have their healthcare needs met appropriately. This paper explores the development of bilingual advocacy in East London, which has a highly diverse population speaking over 100 different languages. It considers the development of the bilingual advocacy services by an NHS University Hospital Trust, the local experience of these services and the factors that have influenced their development. We employed the Delphi method amongst the four authors to examine the advocate-, service- or client-related challenges that face advocacy services; and the threats of these challenges to Trust-based advocacy and their implications to the service, client and advocate. Advocate-related challenges included status, esteem and remuneration of bilingual advocates in relation to other health professionals, as well as skills development, career progression, gender, capacity building and potential research contributions. Service-related challenges included work load, case mix, administration, commissioning processes/arrangements; entrepreneurial aspects of advocacy services; and mechanisms/potentials for cost recovery. Client-related challenges included continuity of advocacy; language requirements and advocacy needs of clients; and ways in which mobile populations influence planning and delivery of advocacy services for inner city hospitals. The paper concludes with identifying the implications for future development of bilingual advocacy services and the implications for their workforce.

Socio-demographic correlates of betel, areca and smokeless tobacco use as a high risk behavior for head and neck cancers in a squatter settlement of Karachi, Pakistan.

BACKGROUND: Head and neck cancers are a major cancer burden in Pakistan. They share a common risk factor profile including regular consumption of products of betel, areca and tobacco. Use of paan, chaalia, gutka, niswar and tumbaku is acceptable in Pakistan and is considered a normal cultural practice. This cross-sectional study was carried out to understand the relation of socio-demographic factors for the consumption of paan, chaalia, gutka, niswar and tumbaku in Pakistani population. Through systematic sampling, 425 subjects from a squatter settlement in Karachi were interviewed using a structured questionnaire. High risk behavior was defined as Daily use of any of the above products. RESULTS: Daily use of all the substances except chaalia was higher among males compared to females. Chaalia use was higher among adolescents than adults while non-married consumed both chaalia and gutka more than married. Mohajir ethnicity had higher prevalence of paan, gutka and tumbaku use while Pathans had higher prevalence of niswar use. CONCLUSION: Prevalence of use of chewable products is high in Pakistan with particularly high use of certain substances related with socio-demographic profiles. Industrially prepared products, chaalia and gutka, are gaining popularity among youth. Policies and focused interventions can be developed taking into consideration the preferred use of products among different socio-demographic groups.