Patient and staff perspectives on the concept of frailty and its role in assessment and decision making in treatment for older people with lung cancer.

PURPOSE: Frailty influences outcomes in patients with cancer and should be considered when making decisions about treatment but concerns have been raised about possible negative consequences of doing this. Many patients with lung cancer have attributes of frailty and this study explores patient and staff perspectives on its role in decision making in older people with lung cancer. METHODS: The study adopted a two-phase qualitative approach using semi-structured telephone interviews and an in-person focus group. Data was analysed using framework techniques. RESULTS: Three key themes were identified: describing frailty, assessing frailty and perceptions of frailty. Each presented opportunities and challenges for using frailty in the context of treatment decision making. Frailty was described in relation to diverse attributes which made it difficult to define and assess. It was also associated with negative connotations, particularly by patients. CONCLUSION: Frailty has the potential to inform decision making that balances the wish to provide optimum treatment against risks to patients who may not be able to tolerate it. The challenge for healthcare staff is to incorporate frailty assessment into clinical practice in a way that is acceptable to patients and avoids potential unintended harms.

Feasibility and benefits of a structured prehabilitation programme prior to autologous stem cell transplantation (ASCT) in patients with myeloma; a prospective feasibility study.

Evidence supports the benefits of exercise-based rehabilitation in promoting recovery in myeloma patients following autologous stem-cell transplantation (ASCT). However, 'prehabilitation' has never been evaluated prior to ASCT, despite evidence of effectiveness in other cancers. Utilising a mixed method approach the authors investigated the feasibility of a mixed strength and cardiovascular exercise intervention pre-ASCT. Quantitative data were collected to determine feasibility targets; rates of recruitment, adherence and adverse events, including 6minute walking distance (6MWD) test and patient reported outcome measures (PROMs). Qualitative interviews were undertaken with a purposive sample of patients to capture their experiences of the study and the intervention. The authors recruited 23 patients who attended a mean percentage of 75% scheduled exercise sessions. However, retention rates were limited, with only 14/23 (62%) completing the programme. In these patients, the 6MWD increased from a mean of 346 to 451m (i.e. by 105m, 95% CI 62 to 148m) with no serious adverse events. Whist participants found the exercise programme acceptable and reported improvement in their physical fitness and overall mental health and wellbeing prior to ASCT, the study identified challenges in hospital attendance for the prehabilitation schedule whilst receiving induction or re-induction chemotherapy. Evaluation of digitally-enhanced directed but remote prehabilitation models for this patient group is warranted. Trial registration number NCT03135925.

The Development of a Digital Dysphagia Guide with Care Homes: Co-Production and Evaluation of a Nutrition Support Tool.

Good nutrition is a recognised outcome in the health and well-being of older care home residents and dysphagia is a known risk factor associated with under nutrition and poor outcomes. The study co-produced a digital Dysphagia Guide with Care Homes using a consensus method with interviews and focus groups to prioritise the need for information and explore acceptability of an educational tool for care home workers. Evaluation of use, acceptability of design, and content of the guide were completed via remote monitoring. The workforce prioritised the need for training as well as the knowledge and skills in relation to planning resident-centred care and advice on textured diets. The technology was a means of offering 'bite-size' learning to enhance planning for nutrition across the whole organisation including managers, kitchen staff, and care workers. The Guide to Dysphagia was produced on a tablet and piloted in four care homes over 12 weeks, by 57 staff. Integrated analytics allowed user activity to be monitored. Findings showed that 73% of respondents reported the guide helped them in their job. Additionally, 88% of respondents stated they would recommend the guide to other staff, with 90% reporting it was easy to use. Engagement with staff and managers in four homes resulted in a co-designed, dysphagia guide.

Is it feasible to conduct a randomised controlled trial of pretransplant exercise (prehabilitation) for patients with multiple myeloma awaiting autologous haematopoietic stem cell transplantation? Protocol for the PREeMPT study.

INTRODUCTION: While myeloma is an incurable malignancy, developments in disease management have led to increased life expectancy in recent years. Treatment typically involves stem-cell transplantation. Increased survival rates equate to more patients living with the burden of both the disease and its treatment for increasing number of years, rendering myeloma a long-term condition.Evidence exists to demonstrate the benefits of exercise for patients recovering from stem-cell transplantation, and prehabilitation-exercise before treatment-has been shown to be effective in other disease areas. To date there has been no research into prehabilitation in patients with myeloma awaiting transplantation treatment.Our objective is to determine whether it is feasible to conduct a randomised controlled trial into pretransplant exercise for patients with multiple myeloma who are awaiting autologous stem-cell transplantation. METHODS AND ANALYSIS: This mixed methods study identifies patients with diagnosis of multiple myeloma who have been assigned to the autologous transplantation list and invites them to participate in six weekly sessions of individualised, supervised exercise while awaiting transplantation.Quantitative data to determine feasibility targets include rates of recruitment, adherence and adverse events, and outcome measures including 6 min walking distance test and quality of life.Qualitative interviews are undertaken with a purposive sample of patients to capture their experiences of the study and the intervention. ETHICS AND DISSEMINATION: Ethics committee approval has been obtained. Dissemination will be through open-access publications and presentations and will seek to reach multiprofessional bases as well as patients and carer groups, addressing the widespread interest in this area of research. TRIAL REGISTRATION NUMBER: NCT03135925; Pre-results.

Making sense of frailty: An ethnographic study of the experience of older people living with complex health problems.

AIM: To explore how older people with complex health problems experience frailty in their daily lives. BACKGROUND: A better understanding of the personal experience of frailty in the context of fluctuating ill-health has the potential to contribute to the development of personalised approaches to care planning and delivery. DESIGN: An ethnographic study of older people, living at home, receiving support from a community matron service in a large city in the North of England. METHODS: Up to six care encounters with each of ten older people, and their community matron, were observed at monthly intervals, over a period of time ranging from 4 to 11 months. Semi-structured interviews were conducted with the older participants in their own homes. Fieldwork took place over a 4-year period. Data analysis was undertaken using the constant comparative method. FINDINGS: The experience of frailty was understood through the construction of four themes: Fluctuating ill-health and the disruption of daily living; Changes to the management of daily living; Frailty as fear, anxiety and uncertainty; Making sense of changes to health and daily living. CONCLUSIONS: Older people work hard to shape and maintain daily routines in the context of complicated and enduring transitions in health and illness. However, they experience episodic moments of frailty, often articulated as uncertainty, where daily living becomes precarious and their resilience is threatened. Developing an understanding of the personal experiences of frail older people in the context of transition has the potential to inform nursing practice in person-centred care . IMPLICATIONS FOR PRACTICE: Nurses need to support frail older people to maintain independence and continuity of personhood in the context of daily routines.

End of life care: a discursive analysis of specialist palliative care nursing.

AIM: The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. BACKGROUND: Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. DISCUSSION: Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. CONCLUSION: Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.

Economic evaluation of specialist cancer and palliative nursing: Macmillan evaluation study findings.

Economic evaluation of specialist nursing interventions is challenging because of the complex nature of interventions and the difficulty of describing nursing outcomes in simple ways. This article discusses data from a study of Macmillan specialist cancer nursing. Resource-use data and nursing-outcome data were collated from 76 case studies of patients referred to 12 specialist cancer and palliative nursing teams (home-based and hospital-based) in the UK. Specific outcomes related to nursing were defined, and cost and nursing outcome data were analysed together. The data suggested that patients who reported better nursing outcomes had a higher proportion of specialist nursing interventions than those reporting poor nursing outcomes (45% versus 25%). Also, the overall pattern of health-care use was different for those patients who reported positive nursing outcomes. This suggests that positive nursing outcomes can influence patients' access to other health services. The data supported specific hypotheses regarding ways that specialist nurses can influence the cost-effectiveness of care. These data do not constitute a comparative evaluation study, as no control group was identified. Such results are nevertheless important as this type of data has not been gathered previously.

Economic evaluation of specialist cancer and palliative nursing: a literature review.

Little progress has been made in economic evaluation of specialist cancer and palliative care nursing. A literature review of economic studies of clinical nurse specialists (CNSs) was undertaken to assess how the measurement of economic outcomes has been tackled in the literature to date. The initial search found 400 studies. Abstracts from all the studies were reviewed but only 17 studies met the basic criteria for inclusion, reporting primary cost and outcomes data, and clearly specifying the role of a CNS. All of the studies but one focused on direct patient care rather than other CNS roles and were undertaken alongside effectiveness studies. The economic evaluations considered only a narrow range of costs, but a wide range of outcomes. Specific nursing outcomes were only reported in a minority of studies. None of the studies reported cost-effectiveness ratios. However, CNS interventions were reported to be both less costly and more effective than alternative forms of care, negating the need for further cost-effectiveness analysis. Overall, the papers were not of good quality, reducing the validity of the findings. Robust economic evaluations of the CNS role need to be undertaken. These should involve nursing researchers and practitioners so that evaluations reflect the complex and multidimensional nature of CNS care and meet the required standard of evidence to influence practice.

Emotional support and the role of Clinical Nurse Specialists in palliative care.

BACKGROUND: Clinical Nurse Specialists (CNS) play a major role in the delivery of specialist palliative care services to patients with advanced cancer, in hospital, hospice and community settings across the United Kingdom. A major component of their work focuses on the delivery of emotional care and support to patients and their families. AIM: This paper critically examines the literature on emotional care and support for patients with advanced cancer requiring palliative care. The aim is to increase understanding of how CNSs and patients interact and work together to produce emotionally supportive relationships. METHODS: A literature search was performed using the CINAHL, MEDLINE and ASSIA CD-ROM databases and combinations of the key words: 'emotional support', 'emotional care', 'end of life', 'palliative', 'terminal illness', 'advanced cancer', 'Clinical Nurse Specialist', 'emotional labour'. Additional relevant articles were identified from the reference lists of papers identified by the literature search. FINDINGS: The literature revealed a lack of clarity about the terms used to describe emotional care and support. However, at the same time, there is a taken for granted assumption that a shared understanding of these terms exists. Developing supportive nurse-patient relationships involves a complex process, one that consists of getting to 'know the patient' through the effective use of communication skills, in a variety of health care contexts. The costs of engaging in 'emotion work' are highlighted. CONCLUSIONS: Existing research fails to recognize that emotional care and support as a concept is not a fixed, stable entity learnt through experience and socialization, but is moulded by the process of social interaction and by specific contexts and theoretical perspectives. Further methodologically sound research is needed to explore what happens when emotional care and support are delivered in different care settings, obtaining the views of both parties involved. Implications for the practice of CNSs are discussed.

Exploring nursing outcomes for patients with advanced cancer following intervention by Macmillan specialist palliative care nurses.

BACKGROUND: Little information exists about the outcomes from nursing interventions, and few studies report new approaches to evaluating the complex web of effects that may result from specialist nursing care. AIMS: The aim of this study was to explore nursing outcomes for patients with advanced cancer that may be identified as resulting from the care of a Macmillan specialist palliative care nurse. METHODS/INSTRUMENTS: Seventy-six patients referred to 12 United Kingdom Macmillan specialist palliative care nursing services participated in a longitudinal study of their care over 28 days. Patients were interviewed and completed the European Organization for Research on Treatment of Cancer Quality of Life Scale and the Palliative Care Outcomes Scale at referral, and 3, 7 and 28 days following referral to a Macmillan specialist palliative care nursing service. A nominated carer was interviewed at baseline and 28 days. Notes recorded by Macmillan specialist palliative care nurses in relation to each patient case were analysed. FINDINGS: Significant improvements in emotional (P = 0.03) and cognitive functioning (P = 0.03) were identified in changes in patients' European Organization for Research on Treatment of Cancer Quality of Life Scale scores, and in Palliative Care Outcomes Scale patient anxiety scores (P = 0.003), from baseline to day 7. Analysis of case study data indicated that overall positive outcomes of care from Macmillan specialist palliative care nursing intervention were achieved in 42 (55%) cases. STUDY LIMITATIONS: Sample attrition due to patients' deteriorating condition limited the value of data from the quality of life measures. The method developed for evaluating nursing outcomes using data from patient and carer interviews and nursing records was limited by a lack of focus on outcomes of care in these data sources. CONCLUSIONS: A method was developed for evaluating outcomes of nursing care in complex situations such as care of people who are dying. Positive outcomes of care for patients that were directly attributable to the care provided by Macmillan specialist palliative care nurses were found for the majority of patients. For a small number of patients, negative outcomes of care were identified.

Clinical nurse specialists in palliative care. Part 2. Explaining diversity in the organization and costs of Macmillan nursing services.

In the UK, the work of Macmillan clinical nurse specialists in palliative care is now well established. There has been little research, however, into the organizational context in which these nurses operate and the implications for the services they deliver. We report on a major evaluation of the service delivery, costs, and outcomes of Macmillan nursing services in hospital and community settings. The study was based on eight weeks of fieldwork in each of 12 selected services. Data are presented from semi-structured interviews, clinical records, and cost analysis. We demonstrate wide variation across several dimensions: location and context of the services; activity levels; management patterns; work organization and content; links with other colleagues; and resource use. We suggest that such variation is likely to indicate the existence of both excellent practice and suboptimal practice. In particular, our study highlights problems in how teamwork is conceptualized and delivered. We draw on recent organizational theories to make sense of the heterogeneous nature of Macmillan nursing services.

Clinical nurse specialists in palliative care. Part 3. Issues for the Macmillan Nurse role.

The remit and boundaries of the Macmillan Nursing role in the UK have been called into question recently by a number of policy-driven changes. The rapid appointment of tumour site-specific nurses and the development of posts for palliative medicine, stemming originally from the Calman-Hine recommendations for reorganizing cancer services, have created unparalleled challenges of adaptation to new working practices and procedures. The extent to which Macmillan Nurses are adapting to these new demands was addressed as part of a major evaluation study of UK Macmillan Nursing in 12 sites commissioned by the UK charity Macmillan Cancer Relief. This paper draws upon semi-structured interviews with Macmillan Nurses (n = 44) and their key colleagues (n = 47). We found that differences of expectation between Macmillan Nurses and their managers about the appropriate focus of their work lead to problems of role ambiguity and role conflict; that Macmillan Nurses lack resources with which to develop an educative and consultative role and yet substitute for inadequacies in skills and knowledge of other health care staff; and that problems are associated in co-working with newly appointed cancer site-specific nurses and palliative medicine colleagues. Macmillan Nursing has a crucial role to play in meeting the objectives in the NHS Cancer Plan. However, in order to ensure that their expertise is used efficiently and effectively, there is an urgent need to clarify the nature and scope of the Macmillan Nurse role, to attend to issues of team working and to improve the skills of nonspecialist staff in palliative care.

Clinical nurse specialists in palliative care. Part 1. A description of the MacMillan Nurse caseload.

Macmillan Nurses play a significant role in specialist palliative care services in the UK, providing direct and indirect services to patients with complex palliative care needs and to their families. Existing literature shows a developing understanding of the role; however, little detailed data exist regarding the clinical work that they undertake. This paper provides evidence from a major evaluation study, commissioned by Macmillan Cancer Relief. It reports the methods of data collection for the study and then goes on to use data from the evaluation to describe the caseload of Macmillan Nurses. Between September 1998 and October 1999, a team of researchers worked alongside 12 Macmillan teams for a period of 8 weeks with each team. Prospective data were gathered on all new referrals to the services within the 8-week period. This included demographic details, timing of referral, the nature and purpose of contacts, and interventions, recorded from case notes and Macmillan Nurse records. Where possible, a date of death was obtained for all patients. A total of 814 new patients were referred during the study period (range 45-114 per site). The most common reasons for referral were emotional care for the patient (57%), pain control (27%), and other physical symptoms (33%). Thirteen per cent of the patients referred to the services died within 1 week of referral while 40% died within 6 weeks; thus, a significant proportion of patient work is focused on care at the end of life. It is also noteworthy that one-third of patients were still alive, indicating that some patients are being cared for earlier in the illness trajectory. On average, each new patient referral received two or more 'face-to-face' visits and two follow-up phone calls within the 8-week period. It would appear that Macmillan Nurse teams have been successful in getting access to relevant patients. As with any service that provides a complex set of interventions, the Macmillan teams have to adapt and develop the services in each setting. Whilst it is clearly important for the development of a Macmillan service to be tailored to the local conditions, the evidence on diversity suggests that in some cases, stronger guidance, in partnership with both Macmillan Cancer Relief and core providers, may be justified.

Meeting complex needs: an analysis of Macmillan nurses' work with patients.

Macmillan nurses, working as Clinical Nurse Specialists (CNS), are in many ways the public face of specialist palliative care in the UK. However, the way in which they manage their clinical workload is not well understood. Questions about this aspect of their work have emerged from a large-scale evaluation of Macmillan nursing in 12 sites in the Trent and Thames regions of the UK, funded by Macmillan Cancer Relief. This article focuses on how Macmillan nurses enact their patient care role, drawing on caseload data, diaries and semi-structured interviews from the wider evaluation. It concentrates on the following issues: characteristics of referred patients; nature of interventions given; division of time between different aspects of the CNS role; nurses' perceptions of their patient-care role. Findings suggest that activities associated with direct patient care account for the majority of nurses' time, with little time spent in any other individual aspect of the CNS role. The delivery of care to older patients at the end of life is a major part of Macmillan nurses' clinical role. Issues relating to the educational and support needs of Macmillan nurses are raised.

Nursing care for people dying from chronic obstructive airways disease.

Nursing has demonstrated its ability to respond to the palliative care needs of patients, and their families, with advanced cancer. One of the current challenges to palliative care nursing lies in meeting the needs of patients with a diagnosis other than cancer. This paper reports on how nursing is currently organised and delivered to those individuals dying from chronic obstructive airways disease (COAD). The study findings illustrate a group of people whose quality of life is perceived to be poor, and whose health burden is considerable. Currently, nursing knowledge, skills and expertise are being under-utilised within the care of this patient group, and this requires urgent attention by purchasers and providers.