A Qualitative Exploration of Perceived Key Knowledge and Skills in End-of-Life Care in Dementia Patients among Medical, Nursing, and Pharmacy Students

Background: The steady increase in the number of people living and dying with dementia, coupled with the recent focus on quality of care, has highlighted the importance of dementia training for health care professionals. This exploratory study aimed to discover which skills health care students felt were important in providing quality end-of-life care to dementia patients.

Methods: Ninety-four medicine, nursing, and pharmacy students participated in a larger study using open-ended and closed questions to explore attitudes related to caring for dementia patients at the end of life. This study looks at the student responses to an open-ended question regarding the skills and knowledge they believe are needed to provide end-of-life care to dementia patients. Individual responses were reviewed by the researchers, coded into key issues, and tabulated for frequency of occurrences and group differences.

Results: Several common issues emerged: knowledge, patience, empathy, understanding, family involvement, compassion, medication knowledge, respect/patient autonomy, communication, quality of life, and patient education. Significant differences were observed among the participant groups on the following issues: Patience and understanding (pharmacy students mentioned these issues less frequently than medical and nursing students), compassion (medical students mentioned this issue more frequently than pharmacy students), and medication knowledge (pharmacy students mentioned this issue more frequently than medical and nursing students).

Conclusions: Different health care disciplines (in-training) value different skill sets for the provision of dementia care at the end-of-life. As health care education for dementia patients at the end of life is expanded, it will be important to understand which skills both patients and health care students value.

Patient-reported outcomes in randomised controlled trials on age-related macular degeneration

BACKGROUND/AIMS: The purpose of this systematic review was to identify the frequency and type of patient-reported outcome measures (PROMs) used in recent randomised controlled trials (RCTs) for age-related macular degeneration (AMD).

METHODS: The authors conducted a systematic search between January 2010 and November 2013 in MEDLINE, EMBASE, Scopus, Cochrane Library (Central) and the clinical trials registries (http://www.controlled-trials.com and http://www.ClinicalTrials.gov) according to defined inclusion criteria (RCTs on AMD in English). Two independent reviewers evaluated studies for inclusion. One reviewer extracted data of included studies, and a second masked reviewer assessed 10% to confirm accuracy in data collection. Reference lists of included papers and appendices of relevant Cochrane systematic reviews were scanned to identify other relevant RCTs. Information collected on extracted outcomes was analysed using descriptive statistics.

RESULTS: Literature and registry search yielded 3816 abstracts of journal articles and 493 records from trial registries. A total of 177 RCTs were deemed to have met inclusion criteria. Of the 858 outcomes reported, 38 outcomes were identified as PROMs (4.4%). Of the 177 RCTs examined, PROMs were used in 25 trials (14.1%). The National Eye Institute Visual Function Questionnaire-25 was the most frequently used PROM instrument (64% of RCTs with PROMs included).

CONCLUSIONS: This review highlights that a small proportion of AMD RCTs included PROMs as outcome measures and that there was a variety in the instruments used.

Cultivating Compassion through analysis of online patient narratives

Compassion is at the forefront of national and international healthcare policy, practice and educational debates as a result of a series of recent reports (Mid Staffordshire NHS Foundation Trust Inquiry, 2010, Lown et al 2011, Mannion, 2014). Arguably, this emphasis on compassion is in juxtaposition to an increasingly complex technological healthcare system focused upon outcomes, efficiency, productivity and competence. Within this fast paced and time pressured environment innovative strategies are required to cultivate and sustain compassion among healthcare professionals.

Understanding the person’s experience of illness and making an emotional connection are key processes in cultivating compassion (Dewar, 2013). The exponential growth in unsolicited patient narratives has the potential to provide invaluable insight into what matters to patients and their experience of illness. For many patients these stories ‘reclaim’ their illnesses from the traditional biomedical model of disease and reveal otherwise hidden aspects of their experience. The content though freely accessible, is however unedited and lacks safeguards in relation to the quality or accuracy of the information provided. Despite these concerns, healthcare professionals are now challenged to pay attention to these unsolicited patient stories and to consider how they can inform and improve patient care.

This paper discusses the use of online patient narratives in undergraduate nurse education to cultivate compassion. Critical analysis of online patient narratives is advocated as a potential educational strategy to cultivate compassion among future health care professionals.

References
Dewar,B. (2013) Cultivating compassionate care Nursing Standard 27, (34) 48-55

Lown B, Rosen J, Martilla J.(2011) An agenda for improving compassionate care: a survey shows about half of patients say such care is missing. Health Affairs (Millwood) 30, 1772–8.
Mannion,R. (2014) Enabling compassionate healthcare: perils, prospects and perspectives International Journal of Health Policy and Management 2, 115-7
Mid Staffordshire NHS Foundation Trust Inquiry (2010). Independent Inquiry into care provided by Mid Staffordshire NHS Foundation London: Stationery Office.

Late effects of cancer and cancer treatment-the perspective of the patient

PURPOSE: Understanding the experience of late effects from the perspective of cancer survivors is essential to inform patient-centred care. This study investigated the nature and onset of late effects experienced by survivors and the manner in which late effects have affected their lives.

METHODS: Sixteen purposively selected cancer survivors participated in a qualitative interview study. The data were analysed inductively using a narrative schema in order to derive the main themes that characterised patients' accounts of late effects.

RESULTS: Individual survivors tended to experience more than one late effect spanning a range of physical and psychological effects. Late effects impacted on relationships, working life, finances and the ability to undertake daily activities. Survivors reported experiencing psychological late effects from around the end of treatment whereas the onset of physical effects occurred later during the post-treatment period. Late effects were managed using formal health services, informal social support and use of 'wellbeing strategies'. Survivors engaged in a process of searching for reasons for experiencing late effects and struggled to make sense of their situation. In particular, a process of 'peer-patient comparison' was used by survivors to help them make sense of, or cope with, their late effects. There appeared to be an association between personal disposition and adaptation and adjustment to the impact of late effects.

CONCLUSIONS: Cancer survivors identified potential components for supported self-management or intervention programmes, as well as important considerations in terms of peer comparisons, personal disposition and making sense of experienced late effects.

The significance of combining VEGFA, FLT1, and KDR expressions in colon cancer patient prognosis and predicting response to bevacizumab

Targeting angiogenesis through inhibition of the vascular endothelial growth factor (VEGF) pathway has been successful in the treatment of late stage colorectal cancer. However, not all patients benefit from inhibition of VEGF. Ras status is a powerful biomarker for response to anti-epidermal growth factor receptor therapy; however, an appropriate biomarker for response to anti-VEGF therapy is yet to be identified. VEGF and its receptors, FLT1 and KDR, play a crucial role in colon cancer progression; individually, these factors have been shown to be prognostic in colon cancer; however, expression of none of these factors alone was predictive of tumor response to anti-VEGF therapy. In the present study, we analyzed the expression levels of VEGFA, FLT1, and KDR in two independent colon cancer datasets and found that high expression levels of all three factors afforded a very poor prognosis. The observation was further confirmed in another independent colon cancer dataset, wherein high levels of expression of this three-gene signature was predictive of poor prognosis in patients with proficient mismatch repair a wild-type KRas status, or mutant p53 status. Most importantly, this signature also predicted tumor response to bevacizumab, an antibody targeting VEGFA, in a cohort of bevacizumab-treated patients. Since bevacizumab has been proven to be an important drug in the treatment of advanced stage colon cancer, our results suggest that the three-gene signature approach is valuable in terms of its prognostic value, and that it should be further evaluated in a prospective clinical trial to investigate its predictive value to anti-VEGF treatment.

Myeloproliferative neoplasm patient symptom burden and quality of life: evidence of significant impairment compared to controls

The myeloproliferative neoplasms (MPN) including polycythaemia vera (PV), essential thrombocythaemia and primary myelofibrosis (PMF) are rare diseases contributing to significant morbidity. Symptom management is a prime treatment objective but current symptom assessment tools have not been validated compared to the general population. The MPN-symptom assessment form (MPN-SAF), a reliable and validated clinical tool to assess MPN symptom burden, was administered to MPN patients (n = 106) and, for the first time, population controls (n = 124) as part of a UK case–control study. Mean symptom scores were compared between patients and controls adjusting for potential confounders. Mean patient scores were compared to data collected by the Mayo Clinic, USA on 1,446 international MPN patients to determine patient group representativeness. MPN patients had significantly higher mean scores than controls for 25 of the 26 symptoms measured (P < 0.05); fatigue was the most common symptom (92.4% and 78.1%, respectively). Female MPN patients suffered worse symptom burden than male patients (P < 0.001) and substantially worse burden than female controls (P < 0.001). Compared to the Mayo clinic patients, MPN-UK patients reported similar symptom burden but lower satiety (P = 0.046). Patients with PMF reported the worst symptom burden (88.3%); significantly higher than PV patients (P < 0.001). For the first time we report quality of life was worse in MPN-UK patients compared with controls (P < 0.001).

Cataract extraction and patient vision-related quality of life: a cohort study

Aims: Cataract surgery is one of the most common surgeries performed, but its overuse has been reported. The threshold for cataract surgery has become increasingly lenient; therefore, the selection process and surgical need has been questioned. The aim of this study was to evaluate the changes associated with cataract surgery in patient-reported vision-related quality of life (VR-QoL).

Methods: A prospective cohort study was conducted. Consecutive patients referred to cataract clinics in an NHS unit in Scotland were identified. Those listed for surgery were invited to complete a validated questionnaire (TyPE) to measure VR-QoL pre- and post-operatively. TyPE has five different domains (near vision, distance vision, daytime driving, night-time driving, and glare) and a global score of vision. The influence of pre-operative visual acuity (VA) levels, vision, and lens status of the fellow eye on changes in VR-QoL were explored. 

Results: A total of 320 listed patients were approached, of whom 36 were excluded. Among the 284 enrolled patients, 229 (81%) returned the questionnaire after surgery. Results revealed that the mean overall vision improved, as reported by patients. Improvements were also seen in all sub-domains of the questionnaire.

Conclusion: The majority of patients appear to have improvement in patient-reported VR-QoL, including those with good pre-operative VA and previous surgery to the fellow eye. VA thresholds may not capture the effects of the quality of life on patients. This information can assist clinicians to make more informed decisions when debating over the benefits of listing a patient for cataract extraction.

Patient safety and beyond: what should we expect from microneedle arrays in the transdermal delivery arena?

Research based upon microneedle (MN) arrays has intensified recently. While the initial focus was on biomolecules, the field has expanded to include delivery of conventional small-molecule drugs whose water solubility currently precludes transdermal administration. Much success has been achieved, with peptides, proteins, vaccines, antibodies and even particulates delivered by MN in therapeutic/prophylactic doses. Recent innovations have focused on enhanced formulation design, scalable manufacture and extension of exploitation to minimally invasive patient monitoring, ocular delivery and enhanced administration of cosmeceuticals. Only two MN-based drug/vaccine delivery products are currently marketed, partially due to limitations with older MN designs based upon silicon and metal. Even the more promising polymeric MN have raised a number of regulatory and manufacturability queries that the field must address. MN arrays have tremendous potential to yield real benefits for patients and industry and, through diligence, innovation and collaboration, this will begin to be realised over the next 3-5 years.

A patient perspective of pharmacist prescribing: 'crossing the specialisms-crossing the illnesses'

Background: The drive for non-medical prescribing has progressed quickly since the late 1990s and involves a range of healthcare professionals including pharmacists. As part of a commissioned research project, this qualitative element of a larger case study focused on the views of patients of pharmacist prescribers. 

Objective: The aim of this study was to explore patients' perspectives of pharmacists as prescribers. 

Methods: Three pharmacists working as independent prescribers in the clinical areas of (i) hypertension, (ii) cardiovascular/diabetes management, (iii) anticoagulation were recruited to three case studies of pharmacist prescribing in Northern Ireland. One hundred and five patients were invited to participate in focus groups after they had been prescribed for by the pharmacist. Focus groups took place between November 2010 and March 2011 (ethical/governance approvals granted) were audio taped, transcribed verbatim, read independently by two authors and analysed using constant comparative analysis. 

Results: Thirty-four patients agreed to participate across seven focus groups. Analysis revealed the emergence of one overarching theme: team approach to patient care. A number of subthemes related to the role of the pharmacist, the role of the doctor and patient benefits. There was an overwhelming lack of awareness of pharmacist prescribing. Patients discussed the importance of a multidisciplinary approach to their care and recognized limitations of the current model of prescribing. 

Conclusion: Patients were positive about pharmacist prescribing and felt that a team approach to their care was the ideal model especially when treating those with more complex conditions. Despite positive attitudes, there was a general lack of awareness of this new mode of practice.

A qualitative study of community pharmacists’ awareness of and involvement with intermediate care facilities

Rationale, aims and objectives: Intermediate care (IC) describes a range of services targeted at older people, aimed at preventing unnecessary hospitalisation, promoting faster recovery and maximising independence. The introduction of IC has created a new interface between primary and secondary care. Older people are known to be at an increased risk of medication-related problems when transferring between healthcare settings and pharmacists are often not included as part of IC multidisciplinary teams. This study aimed to explore community pharmacists’ (CPs) awareness of IC services and to investigate their views of and attitudes towards the medicines management aspects of such services, including the transfer of medication information.

Method: Semi-structured interviews were conducted, recorded, transcribed verbatim and analysed using a constant comparative approach with CPs practising in the vicinity of IC facilities in Northern Ireland, UK.

Results: Interviews were conducted with 16 CPs. Three themes were identified and named ‘left out of the loop’, ‘chasing things up’ and ‘closing the loop’. CPs felt that they were often ‘left out of the loop’ with regards to both their involvement with local IC services and communication across the healthcare interfaces. As a result, CPs resorted to ‘chasing things up’ as they had to proactively try to obtain information relating to patients’ medications. CPs viewed themselves as ideally placed to facilitate medicines management across the healthcare interfaces (i.e., ‘closing the loop’), but several barriers to potential services were identified.

Conclusion: CPs have limited involvement with IC services. There is a need for improvement of effective communication of patients’ medication information between secondary care, IC and community pharmacy. Increasing CP involvement may contribute to improving continuity of care across such healthcare interfaces, thereby increasing the person-centeredness of service provision.

Correlates of food choice in unemployed young people: The role of demographic factors, self-efficacy, food involvement, food poverty and physical activity

Associations between socio-demographic and psychological factors and food choice patterns were explored in unemployed young people who constitute a vulnerable group at risk of poor dietary health. Volunteers (N = 168), male (n = 97) and female (n = 71), aged 15–25 years were recruited through United Kingdom (UK) community-based organisations serving young people not in education training or employment (NEET). Survey questionnaire enquired on food poverty, physical activity and measured responses to the Food Involvement Scale (FIS), Food Self-Efficacy Scale (FSS) and a 19-item Food Frequency Questionnaire (FFQ). A path analysis was undertaken to explore associations between age, gender, food poverty, age at leaving school, food self-efficacy (FS-E), food involvement (FI) (kitchen; uninvolved; enjoyment), physical activity and the four food choice patterns (junk food; healthy; fast food; high fat). FS-E was strong in the model and increased with age. FS-E was positively associated with more
frequent choice of healthy food and less frequent junk or high fat food (having controlled for age, gender and age at leaving school). FI (kitchen and enjoyment) increased with age. Higher FI (kitchen) was associated with less frequent junk food and fast food choice. Being uninvolved with food was associated with
more frequent fast food choice. Those who left school after the age of 16 years reported more frequent physical activity. Of the indirect effects, younger individuals had lower FI (kitchen) which led to frequent junk and fast food choice. Females who were older had higher FI (enjoyment) which led to less frequent fast food choice. Those who had left school before the age of 16 had low food involvement (uninvolved) which led to frequent junk food choice. Multiple indices implied that data were a good fit to the model which indicated a need to enhance food self-efficacy and encourage food involvement in order to improve dietary health among these disadvantaged young people.

'Talk to me': a mixed methods study on preferred physician behaviours during end-of-life communication from the patient perspective

Background
Despite the recognized importance of end-of-life (EOL) communication between patients and physicians, the extent and quality of such communication is lacking.

Objective
We sought to understand patient perspectives on physician behaviours during EOL communication.

Design
In this mixed methods study, we conducted quantitative and qualitative strands and then merged data sets during a mixed methods analysis phase. In the quantitative strand, we used the quality of communication tool (QOC) to measure physician behaviours that predict global rating of satisfaction in EOL communication skills, while in the qualitative strand we conducted semi-structured interviews. During the mixed methods analysis, we compared and contrasted qualitative and quantitative data.

Setting and Participants
Seriously ill inpatients at three tertiary care hospitals in Canada.

Results
We found convergence between qualitative and quantitative strands: patients desire candid information from their physician and a sense of familiarity. The quantitative results (n = 132) suggest a paucity of certain EOL communication behaviours in this seriously ill population with a limited prognosis. The qualitative findings (n = 16) suggest that at times, physicians did not engage in EOL communication despite patient readiness, while sometimes this may represent an appropriate deferral after assessment of a patient's lack of readiness.

Conclusions
Avoidance of certain EOL topics may not always be a failure if it is a result of an assessment of lack of patient readiness. This has implications for future tool development: a measure could be built in to assess whether physician behaviours align with patient readiness.