Patient-reported outcomes and experiences from a prospective cohort study of older patients with cancer on checkpoint inhibitors: The ELDERS study.

INTRODUCTION: Checkpoint inhibitors (CPI) are widely used across different tumour types in older cancer patients. The ELDERS study investigated primarily the safety of CPI in older patients, and secondarily its impact on health-related quality of life (HRQoL), comparing older and younger patients. Here we describe the results from its secondary aim. MATERIALS AND METHODS: This was an observational, mixed methods study, consisting of questionnaires and qualitative interviews. Patients completed the EORTC QLQ-C30 at baseline and at three-monthly reviews (up to four over the planned 12 months on study). RESULTS: One hundred and forty patients, 70 in each age cohort (older: ≥70 years of age, younger: <70 years of age), were recruited. Twenty-four patients, 12 in each age cohort, were interviewed. The mean baseline EORTC QLQ-C30 score was 65/100 for both cohorts combined, and the score for the full QLQ-C30 assessment was 78/100 and 75/100 for older and younger, respectively. The physical functioning score was the only subscale to change significantly between baseline and the first and second reviews (p = 0.03 and 0.04, respectively), resulting from some improvement in the mean score (from baseline) within the younger cohort and some decline within the older cohort. However, when focusing on each cohort separately, the change over time was not statistically significant for either. Two main themes from the interviews were 'expectations' (thoughts about treatment before commencing) and 'experience' (lived experience during treatment). DISCUSSION: Quantitatively, there was no difference in the effect of CPIs on HRQoL between the cohorts, although qualitative data from interviews suggested that there were some experiential differences. People in the older cohort were less likely to seek additional information about CPIs and were more likely to report side effects. In terms of both 'expectations' and 'experience,' the older cohort was a heterogenous group, highlighting that an individualised approach is needed when supporting this group. This study shows that older patients can be reassured that immunotherapy is unlikely to negatively impact their HRQoL more than younger patients, and it should be considered a viable treatment option.

'A real fine balancing act': A secondary qualitative analysis of power imbalance in comorbid cancer and dementia in an outpatient treatment setting.

AIMS: Studies of health services reveal a focus on provision of scheduled care at the expense of patient need, placing the health service in a position of power and the patient as passive recipient. This secondary qualitative analysis of a focused ethnography draws on the Foucauldian concept of power as pervasive and relational, to examine how an imbalance of power is manifested in situations where people with both cancer and dementia are being treated for cancer. DESIGN: Secondary qualitative analysis of a focused ethnographic study. DATA SOURCES: In the original study, qualitative data were gathered from observation and interviews with people with cancer and dementia (n = 2), caregivers (n = 7) and staff (n = 20). The study was conducted in the outpatient departments of two teaching hospitals in England between January 2019 and July 2021. Data from all sources were analysed for this secondary analysis using constant comparison. RESULTS: The principal theme was balance, encapsulating the competing priorities involved in delivering cancer treatment. There was tension between maintaining safety and ensuring an individual's right to treatment, and difficulty reconciling the needs of the system with the needs of individuals. CONCLUSION: The pervasive nature of power can be harnessed to enhance the agency of people with cancer and dementia by incorporating principles of shared decision making. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: We recommend incorporating the principles of personalized care to achieve more equitable power relations, reduce health inequalities and ensure that cancer treatment offered to people with dementia is safe and appropriate. REPORTING METHOD: EQUATOR (COREQ) guidelines have been used for reporting. PATIENT OR PUBLIC CONTRIBUTION: Patients and the public were involved in designing the original research questions and the study protocol including documentation such as interview topic guides and participant information sheets.

Understanding the cultural environment of the outpatient care setting for patients with dementia receiving cancer treatment: A qualitative study.

INTRODUCTION: People with dementia have poorer cancer outcomes than those without dementia, and experience inequalities in access to, and quality of, care. Outpatient environments, where radiotherapy, chemotherapy and immunotherapy cancer treatments typically take place, have largely been excluded from research. This study was conducted to understand provision of treatment and support and experiences of care for people with dementia undergoing cancer treatment in the outpatient setting. MATERIALS AND METHODS: Using observation, interviews and document analysis, data were collected to scrutinize the cultural environment of ambulatory care, comprising the physical fabric of the care setting; interactions, behaviours and perceptions of those in the care setting; and the organizational, clinical and interactional processes involved in care delivery. The study was conducted in the outpatient oncology departments of two large teaching hospitals in England between January 2019 and July 2021. RESULTS: Data were gathered from a wide range of sources, including 15 h of observation, and interviews with patients (n = 2), caregivers (n = 7) and staff (n = 20). Evidence from this study suggests that the cultural environment of the outpatient care setting reflects and supports the standardized processing of people for cancer treatment. Dementia introduces a wider set of care requirements not catered for by this standardized treatment model and associated processes. Data showed that the needs of patients with dementia could be addressed most effectively when individualized care, as opposed to standardized care, was offered. CONCLUSION: There is work to be done in outpatient cancer services to ensure responsiveness to individual patient need. This could be achieved by having an established way (or ways) of eliciting needs, preferences and expectations, a belief that a person's needs and expectations are legitimate and that effort should be made to address them, with the ability to accommodate these needs and expectations. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers were involved in the study design and development of study materials including the interview topic guide. They also assisted with discussion and clarification of study findings.

Psychosocial interventions with art and music during stem cell transplantation: An integrative review.

OBJECTIVES: The objective of this study is to systematically review the literature with the following aims: to survey the art and music interventions offered to the stem cell transplant population; to define the interventions' beneficial properties by conceptualising themes; to analyse these themes using behavioural activation principles as a lens and explore their value in alleviating isolation-related distress. BACKGROUND: Patients undergoing stem cell transplant are at great risk of psychological morbidity, partly on account of prolonged hospital stays in protective isolation. This risk extends beyond discharge and into ambulatory care, negatively affecting quality-of-life and survival rates of the transplant recipients. DESIGN: Integrative review methodology. METHODS: A systematic search of 10 bibliographic databases was undertaken using terms relating to art, music and stem cell transplantation for the years 2012 to 2019. Records were assessed for quality and risk-of-bias using a critical appraisal tool and following the PRISMA Systematic Review checklist to guide reporting. Studies were analysed narratively and thematically. RESULTS: The 16 papers were of mixed quality. Findings and treatment effects differed between and within studies. The beneficial attributes of the treatments were clustered and divided into two groups. The first consisted of intrinsic, patient-focussed factors: (1) Creative outlet or acquisition of a new skill; (2) achievement of normality; (3) mutual or peer-support; (4) relationship-building and (5) meaningful recreation, distraction and diversion. The second group considered extrinsic factors: (6) Improved communication; (7) enhanced spiritual care and (8) better healthcare experience. CONCLUSIONS: Several art and music interventions have been attempted which were beneficial to patients and generated a sense of achievement, connection and enjoyment. The interventions appear to uphold the principles of person-centred holistic care and have potential to generate a high-quality, supportive healthcare and working environment. RELEVANCE TO CLINICAL PRACTICE: Psychosocial interventions with art and music have improved the care and experience of patients undergoing stem cell transplant.

Self-management by older people living with cancer and multi-morbidity: a qualitative study.

PURPOSE: Over half of individuals diagnosed with cancer are aged over 70 years, and more than 75% of those with cancer report at least one other medical condition. Having multiple conditions alongside cancer in old age may lower functional status, greater likelihood of treatment complications and less favourable prognoses. This qualitative study explored how older people with long-term chronic conditions manage their health and meet their health-related goals after they have completed treatment for cancer. METHODS: One-to-one face-to-face qualitative interviews were conducted with 8 older people and 2 informal caregivers based in the UK. Older adults were eligible to participate if they were over 70 and had completed primary cancer treatment with curative intent and had at least one other chronic health condition. A semi-structured interview schedule developed a priori based on Shippee's cumulative complexity model was used. We aimed to explore experiences that could influence self-management, utilisation of healthcare services and health outcomes. A framework analysis was used to describe and interpret the data. RESULTS: Four overarching themes were identified in the analysis. These themes related to factors that influenced the everyday health-related workload and capacity of the participants. These factors included their health, resources, and opportunities, as well their motivation and sense of perceived control over their lives. CONCLUSIONS: Fragmented healthcare systems and relationships with healthcare professionals also influenced the participants' self-management of their health. Our findings highlight the interaction between an individuals' needs, capacity, treatment burden, and the services and resources available to them. These findings support calls to promote person-centred care to better support older adults to manage their health.

Planning and optimising CHAT&PLAN: A conversation-based intervention to promote person-centred care for older people living with multimorbidity.

BACKGROUND: Older people are more likely to be living with cancer and multiple long-term conditions, but their needs, preferences for treatments, health priorities and lifestyle are often not identified or well-understood. There is a need to move towards a more comprehensive person-centred approach to care that focuses on the cumulative impact of a number of conditions on daily activities and quality of life. This paper describes the intervention planning process for CHAT& PLANTM, a structured conversation intervention to promote personalised care and support self-management in older adults with complex conditions. METHODS: A theory-, evidence- and person-based approach to intervention development was undertaken. The intervention planning and development process included reviewing relevant literature and existing guidelines, developing guiding principles, conducting a behavioural analysis and constructing a logic model. Optimisation of the intervention and its implementation involved qualitative interviews with older adults with multimorbidity (n = 8), family caregivers (n = 2) and healthcare professionals (HCPs) (n = 20). Data were analysed thematically and informed changes to the intervention prototype. RESULTS: Review findings reflected the importance of HCPs taking a person-centred (rather than disease-centred) approach to their work with older people living with multimorbidity. This approach involves HCPs giving health service users the opportunity to voice their priorities, then using these to underpin the treatment and care plan that follow. Findings from the planning stage indicated that taking a structured approach to interactions between HCPs and health service users would enable elicitation of individual concerns, development of a plan tailored to that individual, negotiation of roles and review of goals as individual priorities change. In the optimisation stage, older adults and HCPs commented on the idea of a structured conversation to promote person-centred care and on its feasibility in practice. The idea of a shared, person-centred approach to care was viewed positively. Concerns were raised about possible extra work for those receiving or delivering care, time and staffing, and risk of creating another "tick-box" exercise for staff. Participants concluded that anyone with the appropriate skills could potentially deliver the intervention, but training was likely to be required to ensure correct utilisation and self-efficacy to deliver to the intervention. CONCLUSIONS: CHAT&PLAN, a structured person-centred conversation guide appears acceptable and appealing to HCPs and older adults with multimorbidity. Further development of the CHAT&PLAN intervention should focus on ensuring that staff are adequately trained and supported to implement the intervention.

Self-management in older people living with cancer and multi-morbidity: A systematic review and synthesis of qualitative studies.

OBJECTIVE: Many older people with cancer live with multimorbidity. Little is understood about the cumulative impact of old age, cancer and multimorbidity on self-management. This qualitative systematic review and synthesis aimed to identify what influences self-management from the perspective of older adults living with cancer and multimorbidity. METHODS: Six databases were systematically searched for primary qualitative research reporting older adults' experiences of living with cancer and multimorbidity (eg, Medline, Embase, and CINAHL). A thematic synthesis was guided by Shippee's model of cumulative complexity. Text labelled as results in the included papers was treated as data. RESULTS: Twenty-eight studies were included. While the included studies varied in their focus, our analysis highlighted a number of important themes consistent across the studies. Health conditions with the greatest negative impact on independent living assumed the greatest importance, sometimes meaning their cancer was a low priority. Self-management practices seen as likely to interfere with quality of life were deprioritized unless viewed as necessary to maintain independence. When burden outweighed capacity, people were reluctant to ask for help from others in their social network. The contribution of formal healthcare services to supporting self-management was relatively peripheral. CONCLUSIONS: Old age and multimorbidity together may complicate self-management after cancer, threatening health and well-being, creating burden and diminishing capacity. Older adults prioritized self-management practices they considered most likely to enable them to continue to live independently. The protocol was registered with Prospero (CRD42018107272).

Interventions for older people having cancer treatment: A scoping review.

OBJECTIVES: There is currently no overview of supportive interventions developed for older people having cancer treatment. The aims and objectives, methods, and outcomes of interest of existing supportive interventions have not been evaluated. To understand how health services might meet the needs of older people undergoing cancer treatment, a scoping review was undertaken to identify and characterise supportive interventions developed for this patient group. MATERIALS AND METHODS: This scoping review examined supportive interventions (services, programs, tools or policies) applied during diagnosis or treatment that address physical, psychological, social or spiritual needs of older patients. A systematic search of the following electronic databases was undertaken August-October 2017 (updated March 2019): AMED; CINAHL; EMBASE; Medline; PsychINFO. RESULTS: Sixty-two papers met the inclusion criteria. The review established that existing interventions to support older people having treatment for cancer are diverse in aim, and the evaluation methodology and outcome measure selection vary considerably. The interventions rarely target complex issues such as multimorbidity, frailty, or the impact of other geriatric syndromes in addition to cancer. CONCLUSION: We suggest that future research should focus on patient populations with complex needs, including addressing comorbidity and age-associated conditions such as dementia.

Supporting women with toileting in palliative care: use of the female urinal for bladder management.

AIMS AND OBJECTIVES: This study explored whether a female urinal is an acceptable, safe and effective product to meet the toileting requirements of women receiving palliative care on oncology wards in hospitals. BACKGROUND: There is minimal evidence on how urinary incontinence should be managed in women receiving palliative care. Female urinals may present an option. There have been two general reviews of products, but no formal evaluation since 1999. METHODS: This qualitative interview study used semi-structured interviews. Eleven healthy volunteers, 9 patients and 7 staff members used (or assisted with) a VernaFem (Vernacare) female urinal and were subsequently interviewed. Directed content analysis was used to analyse the interviews. RESULTS: User testing confirmed that the VernaFem is an acceptable, safe and effective product. Design improvements were suggested. CONCLUSIONS: While unlikely to be suitable for all patients, hospitals should consider offering a female urinal to patients in receipt of palliative care.

Cancer treatment decision-making processes for older patients with complex needs: a qualitative study.

OBJECTIVES: Although older people can experience complex health and social care needs alongside a primary cancer diagnosis, little is understood about how cancer treatment decisions are made for this population. This study aimed to investigate how cancer treatment decisions are formulated for older people with complex health and social care needs and the factors that shape these processes. DESIGN: Qualitative study involving semistructured interviews and non-participant observations. Framework approach used for data analysis. SETTING: Breast and colorectal cancer services in five English NHS hospital trusts. PARTICIPANTS: Interviews: purposive sample of 22 clinicians directly involved in a face-to-face clinical role with patients regarding cancer treatment and care, maximising variation across clinical roles, tumour types and trusts. OBSERVATIONS: purposive sample of five cancer multidisciplinary meetings, maximising variation across location, team size and tumour type. RESULTS: The initial stages of cancer treatment decision-making are team-based, medically dominated and focused on the cancer. For patients with complex health and social care needs that extend beyond cancer pathology, later and less visible stages in the decision-making process are more haphazard and may result in less effective and workable treatment plans, as individual clinicians struggle to devise and deliver these plans without breaching time-based targets. CONCLUSIONS: Service targets that focus resources solely on the presenting disease can disadvantage older patients with complex health and social care needs that extend beyond this primary diagnosis. Care should be taken to ensure time-based targets do not disincentivise thorough and timely assessment that can lead to the formulation of treatment plans tailored to individual needs and circumstances.

Exploring the role of practical nursing wisdom in the care of patients with urinary problems at the end of life: a qualitative interview study.

AIMS AND OBJECTIVES: This study examined how nurses understand urinary problems at the end of life, and identified sources of evidence upon which they base their practice through semi-structured qualitative interviews. The aim was to decide whether research or interventions (such as formulation of best practice guidelines) could improve continence care at the end of life. BACKGROUND: There is little evidence in nursing literature to indicate how nurses should manage urinary problems at the end of life. Evidence is particularly lacking regarding the insertion of indwelling urinary catheters. DESIGN: This was an applied qualitative interview study which used the 'guided interview' approach. METHODS: Twelve participants who worked in two hospital wards and one hospice were interviewed about management of patients with urinary problems approaching the end of life. The transcribed interviews were organised using the qualitative analysis software qsr NVivo version 10 (QSR International, Melbourne, Australia). Constant comparison was used to analyse the interviews. RESULTS: The patient and their family were a key concern of all interviewees. Participants focused on processes including: giving care, making decisions, managing uncertainty and assimilating knowledge. These processes are mediated by 'phronesis' or practical wisdom. CONCLUSIONS: Within each of the processes (giving care, making decisions, managing uncertainty and assimilating knowledge), participants approached each patient as an individual, using experience, patient wishes, available resources, clinical knowledge and advice from colleagues to provide care. A generalised set of guidelines on managing urinary problems at the end of life would probably not be useful. RELEVANCE TO CLINICAL PRACTICE: There is uncertainty about what constitutes best practice in specific areas of continence care at the end of life such as indwelling urinary catheter insertion. A careful approach is needed to ensure that the intellectual and moral knowledge that constitutes practical wisdom is shared and developed throughout teams.

Enhancing nurse-patient communication: a critical reflection.

Patients with cancer can easily become overloaded with information about diagnosis, prognosis, treatments and side effects. One of a nurse's most important roles is to help patients and their families make sense of this, providing support and information through their cancer journey. However, many barriers exist, including the nurse's own knowledge limitations, time constraints and the patient's engagement with the nurse. This paper uses critical reflection to evaluate an incident from clinical practice involving a patient with prostate cancer suffering from a distressing side effect of treatment: urinary incontinence following a transurethral resection of the prostate (TURP). The paper examines nurse-patient communication, and evaluates how nurses can use communication strategies to minimise patient distress. Practical approaches to managing urinary incontinence are also discussed. This paper demonstrates that critical reflection is a valuable learning process that can alter clinical nursing practice to provide the best care for people with cancer.

Indwelling urinary catheter use at the end of life: a retrospective audit.

This audit aimed to measure: the prevalence of indwelling urinary catheters in patients at the end of life; the use of nursing documentation relating to catheter insertion and care; and prevalence of continence screening on admission. The audit involved a retrospective examination of case notes of patients who died on two oncology wards and a hospice at a large teaching hospital in the south of England. The audit showed that 63% of patients had an indwelling catheter during their admission. Documentation relating to urinary catheter insertion and care was present in 75% of cases, and 75% of patients received continence screening on admission. The findings confirm that indwelling urinary catheters are frequently used as a tool to manage urinary difficulties at the end of life, but that the indications for insertion and continued use can be unclear. Research is needed to establish appropriate use.

Managing urinary incontinence at the end of life: an examination of the evidence that informs practice.

To achieve a 'good' death, management of urinary incontinence at the end of life arguably should be as much a priority for nursing attention as managing symptoms such as pain and nausea. To understand how contemporary best practice is described and the nature of interventions prescribed for managing this issue, this article reviews the content of 16 seminal palliative care textbooks and 10 journal articles (retrieved through systematic search techniques) that discuss the management of urinary incontinence for patients at the end of life. The findings depict an area of nursing that has been governed by 'common sense' and precedent rather than evidence-based research, particularly regarding the use of indwelling urinary catheters. There is very little robust research evidence on this topic. Further research is required to ascertain the current state of practice in settings where patients who are approaching the end of life are cared for and the needs and preferences of patients and families.