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.

Staff experiences of the use of virtual consultations in non-surgical oncology systemic anticancer therapy services.

PURPOSE: In response to the COVID-19 pandemic, virtual consultations were introduced rapidly across cancer services. This created a particular set of challenges for systemic anticancer therapy services, where patients have frequent, regular appointments to support decision-making regarding treatment. This study explores the experiences of staff who provide these consultations to understand the implications for patients, staff, and services. METHODS: A mixed-methods approach was utilized using electronic surveys containing open text and structured responses and a focus group. The survey was sent to all staff in a regional cancer center who carried out consultations with patients receiving Systemic Anticancer Therapy. Data collection took place between October 2020 and January 2021. Open text responses were analyzed using framework techniques. RESULTS: Thirty-three medical, nursing, and pharmacy staff completed the survey, and 21 attended the focus group. Staff experiences were described within a framework of risk, loss, and gain. Virtual consultations had clinical consequences for the accuracy of assessments and communication with patients. Criteria for using virtual or in-person appointments were identified along with organizational systems and processes that influenced effectiveness and safety. Concerns were raised regarding role satisfaction and use of clinical skills. CONCLUSION: The study provides new insights into the experiences and concerns of staff associated with virtual appointments. The primary purpose of consultation in systemic anticancer therapy services is to support decision-making regarding treatment, and the study identified obstacles to achieving this alongside possible criteria for determining when in-person or virtual consultations may be appropriate.

Living with mesothelioma: A qualitative study of the experiences of male military veterans in the UK.

PURPOSE: The UK has the highest incidence of mesothelioma in the world. Evidence in the United States suggests that mesothelioma may disproportionately affect military veterans. However, there has been no investigation of the experience of UK veterans living with mesothelioma. The Military Mesothelioma Experience Study (MiMES) aimed to understand the experience and health/support needs of British Armed Forces personnel/veterans with mesothelioma. METHODS: Semi-structured interviews were conducted with 13 veterans living with mesothelioma, and nine family members of veterans living with mesothelioma. Participants were recruited via charities and asbestos support groups. Data were analysed using thematic analysis. RESULTS: Participants' experiences are presented using three themes, i) exposure to asbestos and awareness of asbestos related diseases, ii) using military strategies to cope with mesothelioma and iii) preferences for information and support. MiMES indicates that the nature and range of UK military veterans' asbestos exposure is varied and not limited to high risk occupations. Participants' knowledge of asbestos and experience of mesothelioma influenced their experiences of diagnosis. Participants had coping strategies influenced by their military experiences. Assistance in navigating health and military systems was considered beneficial, especially if support was provided by professionals with knowledge or experience of the military. Attributes which may inhibit veterans from seeking professional support are discussed. CONCLUSION: MiMES provides insight into how UK military veterans experience and cope with mesothelioma. Key implications focus on the role that Mesothelioma Nurse Specialists, Asbestos Support Groups and veterans groups play in providing acceptable support for UK veterans.

Patient experiences of participation in a radical thoracic surgical trial: findings from the Mesothelioma and Radical Surgery Trial 2 (MARS 2).

BACKGROUND: The Mesothelioma and Radical Surgery Trial (MARS 2) aims to evaluate a surgical procedure by comparing chemotherapy and surgery against chemotherapy alone. The pilot study for MARS 2 evaluated the viability of recruitment. Challenges have been reported in conducting clinical research into thoracic surgical treatments and evidence is required to improve our understanding of patient experiences of trial procedures, trial treatments and the factors that influence participation. METHODS: This longitudinal qualitative study was nested within the MARS 2 pilot. Semi-structured telephone interviews were conducted with 15 participants in the MARS 2 trial. Interviews were conducted post-randomisation, post-surgery (surgery arm) and at 6 and 12 months. Altogether, 41 interviews were carried out. The data were analysed using framework techniques. RESULTS: Challenges were identified regarding the volume and complexity of information given to participants, and their understanding of clinical equipoise and randomisation. Factors influencing participation included having an opportunity to undergo surgery, a self-assessment of their ability to cope with trial treatments, maintaining a positive approach and altruism. Obstacles included the logistics of traveling for treatment in an unfamiliar setting. Negative consequences of trial participation included increased uncertainty amplified by multiple care providers and unclear transition arrangements after the trial. CONCLUSIONS: Participants' descriptions provided insights that have implications for care for mesothelioma trial patients. The need for healthcare staff to be alert to the potential for misunderstanding, particularly when presenting treatment options, was identified. Patients perceived and derived benefits from taking part in the trial but experienced some negative consequences. These should be anticipated and managed proactively. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02040272 . Registered on 20 January 2014.

Communication of a mesothelioma diagnosis: developing recommendations to improve the patient experience.

Background: Malignant pleural mesothelioma (MPM) is an aggressive cancer linked to asbestos exposure and inhalation. As with other cancers, receiving a diagnosis of MPM is challenging and distressing. Particular challenges are associated with communicating a diagnosis of MPM, including explaining the disease and its prognosis, treatment options and legal and financial implications. Receiving A Diagnosis Of Mesothelioma (RADIO Meso) aimed to understand the experience of communicating a diagnosis of MPM from the perspective of patients, family carers and health professionals. Methods: This qualitative study comprised 31 individual interviews with patients, family carers and health professionals. This was followed by two group interviews (n=42) and an electronic consultation exercise (n=39). Results: This study provides unique insight into the mesothelioma diagnostic experience of patients, family carers and health professionals. Key findings include the importance of regarding diagnosis as a process, and provision of continuity and consistency. The clinical nurse specialist and effective multidisciplinary team working provided vital contributions to successful mesothelioma diagnostic communication. Facilitators to diagnostic communication included honesty and timeliness in communication, partnership working and maintaining a patient-centred approach. Challenges to enhancing mesothelioma diagnosis communication included accessing ongoing training, ensuring a suitable clinical environment and being able to allocate appropriate time. Conclusion: The RADIO Meso study highlights factors that influence the communication of a diagnosis of MPM from the perspectives of individual patients and family carers. These findings provide the basis for a set of recommendations that can be used by health professionals to improve the MPM diagnostic experience.

The role of temperature in the detection and diagnosis of neutropenic sepsis in adult solid tumour cancer patients receiving chemotherapy.

PURPOSE: The primary aim of this study was to examine the value of temperature as a diagnostic and prognostic indicator of infection and sepsis in neutropenic patients. A secondary aim was to gain insight into the presenting symptoms reported by these patients at home or on their initial admission assessment. METHODS: A cohort study was carried out using a case note review of 220 emergency admissions to a regional cancer centre. All participants were neutropenic and were diagnosed with infection on admission. The main outcome measures were relationships between Early Warning Scores and temperature values at home, on admission and during the hospital stay. RESULTS: 22% of patients who became acutely unwell did not have a fever. Pearson correlations showed only small associations between highest temperature value at any time point and highest early warning scores (r(202) = 0.176, P = .012). Temperature at home (B = 0.156, P = .336) and temperature on admission (B = 0.200, P = .052) did not predict highest Early Warning Scores. CONCLUSIONS: Body temperature is not a consistently reliable diagnostic or prognostic indicator for outcomes in patients with neutropenia and symptoms of infection. It can assist with early presentation and recognition of infection in many neutropenic patients. However, over-reliance on temperature risks missing the opportunity for early detection and treatment.

Experiences of Women With Gestational Trophoblastic Neoplasia Treated With High-Dose Chemotherapy and Stem Cell Transplantation: A Qualitative Study.

PURPOSE/OBJECTIVES: To explore the experiences of women with gestational trophoblastic neoplasia during and after treatment to understand their perspectives, priorities, and concerns.
. RESEARCH APPROACH: A descriptive, exploratory study using in-depth semistructured interviews.
. SETTING: All interviews were conducted in a quiet, designated room at Weston Park Hospital in Sheffield, South Yorkshire.
. PARTICIPANTS: Women with gestational trophoblastic neoplasia who had received stem cell transplantation from 2003 to 2013. Ten patients were eligible, and eight agreed to participate.
. METHODOLOGIC APPROACH: Interviews were carried out over the phone and were recorded and transcribed verbatim. Framework analysis was carried out to generate in-depth descriptions of participants' experiences.
. FINDINGS: Participants described significant physical, psychological, and social effects during and following treatment. Recovery was slow, and treatment had long-term effects on sexuality and body image. The impact of the women's diagnosis and treatment on their children was a primary concern.
. INTERPRETATION: The study provided insight into the multidimensional impact of stem cell transplantation, which can continue after treatment. The need for family-centered services for patients with dependent children was identified.
. IMPLICATIONS FOR NURSING: Nurses need to develop services that effectively communicate the challenges of stem cell transplantation to patients and provide family-centered care and late effects and rehabilitation services.

Patient's experiences of being discharged home from hospital following a diagnosis of malignant spinal cord compression.

PURPOSE: The purpose of this study is to explore experiences in the days and weeks following discharge home following diagnosis and treatment for metastatic spinal cord compression (MSCC). METHODS: Eleven participants took part in audio-recorded semi-structured interviews about their experiences at 1 and 3-4 weeks post-discharge home following a diagnosis of MSCC. Transcripts were analysed using a framework approach. RESULTS: Time emerged as an overarching theme within the framework of four time points: past, present, near future and distant future. Themes included getting home, challenges at home, community support, getting back to normal, in limbo, long-term goals and coping strategies. CONCLUSION: Getting to a level of coping at home after discharge following MSCC can take time. Services need to address this so that patients can live well within the limitations they face.

The difficulties experienced by nurses and healthcare staff involved in the process of breaking bad news.

AIMS: The aim of this study was to explore the difficulties experienced by nurses and healthcare professionals when engaging in the process of breaking bad news. BACKGROUND: The challenges faced by staff when breaking bad news have previously been researched in relation to particular settings or participants. This study involved staff from diverse settings and roles to develop broader insights into the range of difficulties experienced in clinical practice. DESIGN: The study used a descriptive survey design involving self-reported written accounts and framework analysis. METHODS: Data were collected using a structured questionnaire containing a free text section that asked participants to describe a difficult experience they had encountered when involved in the process of breaking bad news. Data were collected from healthcare staff from hospital, community, hospice and care home settings attending training days on breaking bad news between April 2011 and April 2014. FINDINGS: Multiple inter-related factors presented challenges to staff engaging in activities associated with breaking bad news. Traditional subjects such as diagnostic and treatment information were described but additional topics were identified such as the impact of illness and care at the end of life. A descriptive framework was developed that summarizes the factors that contribute to creating difficult experiences for staff when breaking bad news. CONCLUSION: The framework provides insights into the scope of the challenges faced by staff when they engage in the process of breaking bad news. This provides the foundation for developing interventions to support staff that more closely matches their experiences in clinical practice.

Neutropenic sepsis: prevention, identification and treatment.

Chemotherapy-induced neutropenia may result in significant physical, social and emotional consequences for patients receiving anticancer therapy. Chemotherapy-induced neutropenia also leads to delays in treatment and reductions in dose intensity. In some cases neutropenia may be prevented by the use of granulocyte-colony stimulating factor, but it remains one of the most common side effects of chemotherapy. Patients who are neutropenic have a reduced ability to fight infection and are at increased risk of developing neutropenic sepsis. Nurses need to be able to recognise the signs and symptoms of neutropenic sepsis to ensure early diagnosis and treatment. There are evidence-based pathways for the treatment of patients with neutropenic sepsis and nurses have the potential to develop services and initiatives to support best practice for this group of patients.

Self-reported competence in long term care provision for adult cancer survivors: A cross sectional survey of nursing and allied health care professionals.

BACKGROUND: Cancer survival is increasing as patients live longer with a cancer diagnosis. This success has implications for health service provision in that increasing numbers of adults who have received cancer therapy are requiring monitoring and long-term health care by a wide range of practitioners. Given these recent trends there is a need to explore staff perceptions and confidence in managing the consequences of cancer diagnosis and treatment in cancer survivors to enhance an integrated cancer service delivery. OBJECTIVE: This study examines the self-reported perceptions of competence in nurses and professionals allied to medicine providing survivorship services caring for adults after cancer treatment in both secondary and primary care. DESIGN: A cross sectional survey of the adult cancer workforce using a self-assessment tool for assessing confidence in providing long-term cancer patient management. This study was a health service evaluation. SETTING: The study was conducted within the United Kingdom. PARTICIPANTS: Respondents were 618 health care professionals of these 368 were specialist adult cancer nurses in oncology and the community setting and 250 cancer allied health professionals. METHOD: The survey tool was developed with experts in cancer management, nurses professionals allied to medicine such as physiotherapists and dieticians, educationalists, patient groups as well as health service managers. Competence was assessed in 4 domains clinical practice, symptom management, care co-ordination and proactive management. Perceptions of training needs were also ascertained. Data were collected using an Internet survey distributed through cancer services, community settings and professional institutions. RESULTS: In total 618 practitioners who responded were providing services for adults' 1-year post cancer therapy. Practitioners felt confident in managing psychosocial care and communicating with patients. Deficits in self-reported confidence were found in long-term medications management, care planning, long-term and complex symptom management, for those providing dimensions of care coordination and proactive care. Differences in confidence were seen between practitioner groups. Community nurses felt less skilled in managing adult cancer patients long-term. CONCLUSIONS: Nurses and allied health professionals self-reported confidence, in managing all areas of care for adult cancer survivors, is variable with deficits in important areas of practice. Despite this being a small proportion of practitioners who are working in cancer care, those responding had perceived gaps in knowledge and educational needs. In providing cancer aftercare there is a requisite shift to proactive care, supported self-management and collaborative management if patient's long-term consequences of cancer and its treatment are to be addressed. IMPLICATIONS FOR PRACTICE: If health care providers are to transform cancer survivor services then investment is required in education and capability planning across nurses, allied health professionals in both the hospital and the community setting.

Breaking bad news: issues relating to nursing practice.

The breaking of bad news was traditionally regarded to be the time when a doctor and nurse sat down with a patient and family members to provide information about, for example, a life-limiting diagnosis or a poor prognosis. However, breaking bad news is now generally accepted as a process, not a one-off event, and is considered to refer to any bad, sad or difficult information that alters patients' perceptions of their present and future. Nurses have an important role in the process of providing information and helping patients prepare for, receive, understand and cope with the bad news they have been given. This article aims to help nurses understand the process of breaking bad news and discuss the challenges and difficulties that nurses can face when they are involved with patients who have been given bad news. It also provides guidance with regard to preparing for breaking bad news, giving difficult information, responding to possible reactions, and supporting patients and their relatives after they have received bad news.

Improving care of patients with metastatic spinal cord compression.

Metastatic spinal cord compression is a feature of advanced cancer and the incidence is likely to increase alongside improved survival rates. Patients with spinal cord compression have complex physical, psychological and social care needs. This article describes a multidisciplinary project aimed at improving the care provided to newly diagnosed patients who were admitted to a regional cancer centre for radiotherapy. The project used a range of approaches to measure care, develop and implement interventions, and evaluate outcomes. Aspects of care reviewed in the project included mobilisation, medications including steroids and thrombo-prophylaxis, bowel management, patient priorities and concerns, discharge planning and early detection.

A descriptive exploration of the experiences of patients with significant functional impairment following a recent diagnosis of metastatic spinal cord compression.

AIM: To explore the experiences, concerns and priorities of patients newly diagnosed with advanced malignant spinal cord compression and had significant problems with mobility at presentation. BACKGROUND: The consequences of malignant spinal cord compression can be devastating. Patients and their families are under pressure to adapt quickly to the significant functional impairment that occurs while coping with a diagnosis of advanced cancer. Much of the literature has focused on diagnosis and treatment and little is known about patients' experiences, priorities and concerns. DESIGN: A descriptive qualitative methodology was adopted using semi-structured interviews and Framework Analysis techniques. METHOD: A semi-structured interview schedule was developed to explore patient's descriptions of their experiences leading up to diagnosis and during their admission to the cancer centre along with their thoughts and feelings about their future with malignant spinal cord compression. The interviews took place after completion of radiotherapy before discharge home. Interviews were carried out between April 2009-March 2010. FINDINGS: Ten participants were interviewed. A dual narrative was identified in which participants talked about their concerns and emphasized their ability to cope and maintain a positive outlook. Patients' concerns and priorities were identified. Maintaining hope emerged as an important element of coping. Uncertainty was a source of hope. CONCLUSION: The study provides insights into the experience of malignant spinal cord compression from symptom occurrence to diagnosis and beyond. The findings highlight the importance of early discharge planning and family involvement in meeting patients' priorities for care.

Emerging nursing roles for late effects care for children and young adults with cancer.

INTRODUCTION: Annually around 3500 children and young adults are diagnosed with cancer in the UK. While five year childhood cancer survival rates are high, many will experience long-term health problems as a result of their illness and its treatment. Providing late effects services is vital for this group of patients. The skills and expertise needed for nurses working within these services has not been systematically clarified or agreed. PURPOSE OF THE RESEARCH: To identify and compare the views of managers and nurses on the ideal and existing role of nurses in the provision of late effects care. METHODS AND SAMPLE: Structured questionnaires were utilised to collect data in two phases. Phase 1 captured the views of 80 health service managers and clinicians on ideal roles; Phase 2 captured the perspectives of 36 nurses in existing roles. Questionnaires were distributed via children, teenage and young adult treatment centres across England, UK. The data were tabulated using descriptive statistics while differences were analysed using chi-squared tests. KEY RESULTS: The findings identified ideal and actual roles from the perspectives of managers and nurses. Differences were identified in a number of domains. The nurses' role was clinically and patient-care focused, containing fewer elements relating to service development, research or education. CONCLUSION: Our work has identified existing and ideal roles for nurses providing late effects services. This information has provided the foundation for the development of a nurse competence framework which has been ratified by the Royal College of Nursing, UK.

Breaking bad news in inpatient clinical settings: role of the nurse.

AIM: This paper is a report of an exploration of the role of the nurse in the process of breaking bad news in the inpatient clinical setting and the provision of education and support for nurses carrying out this role. BACKGROUND: The term 'breaking bad news' is mostly associated with the moment when negative medical information is shared with a patient or relative. However, it can also be seen as a process of interactions that take place before, during and after bad news is broken. Little research has been conducted exploring the role of the nurse in the process of breaking bad news in the inpatient clinical setting. METHODS: A questionnaire was developed using Likert scales and open text questions. Data collection took place in 2007. Fifty-nine inpatient areas took part in the study; 335 questionnaires were distributed in total and 236 were completed (response rate 70%). RESULTS: Nurses engaged in diverse breaking bad news activities at many points in care pathways. Relationships with patients and relatives and uncontrolled and unplanned events shaped the context in which they provided this care. Little formal education or support for this work had been received. CONCLUSION: Guidance for breaking bad news should encompass the whole process of doing this and acknowledge the challenges nurses face in the inpatient clinical area. Developments in education and support are required that reflect the challenges that nurses encounter in the inpatient care setting.

Evaluating the care of patients with malignant spinal cord compression at a regional cancer centre.

The consequences of malignant spinal cord compression (MSCC) can be devastating. If not detected early, MSCC can result in paralysis and significant bowel and bladder dysfunction that is not improved by treatment. Patients have to cope with sudden and unexpected disability alongside a diagnosis of advanced cancer. A multidisciplinary group was established within a cancer centre to review the care of patients with MSCC. Two linked studies were carried out: a staff questionnaire sent to senior medical staff and all nurses and an audit of documentation. The documentation audit reviewed the notes of 50 patients who had received radiotherapy for MSCC. The symptoms patients presented with on admission and before discharge demonstrated that many experienced significant physical problems as a consequence of developing MSCC. Usually, these symptoms were either unaffected by treatment, or had deteriorated further by the time of their discharge from hospital. The average number of days between admission with MSCC and death was 58.6 days (range 2 to 319 days). The project identified variations in practice in a range of aspects of care and provided clear evidence for the need to develop interventions in relation to specific concerns.

Patients' experiences of intracavity brachytherapy treatment for gynaecological cancer.

Intracavity brachytherapy for gynaecological cancer presents patients with a wide range of physical and psychological challenges. Previous research into women's experiences of this treatment has been limited. This study explores the experiences of patients before, during and after treatment. 32 patients completed questionnaires or interviews before and after treatment and symptom checklists at two hourly intervals during treatment. Nurses also completed two hourly assessments of their perceptions of the degree of difficulty patients were experiencing. While patients reported feeling fully informed and supported they had many concerns before treatment. During treatment there was a wide variation in the degree of difficulty patients experienced particularly in relation to pain. One-third of nurses' assessments of patients' pain were underestimations of a mean greater than two. Coping strategies, post-treatment concerns and the characteristics of patient information were identified. Patients experienced a range of physical and psychological difficulties as a result of their treatment. Patient information played an important role in helping patients cope, but could not allay all of their fears. The approach taken by patients towards brachytherapy was something to be endured for future benefits. Many of the findings may be relevant to both low-dose, and high-dose, rate brachytherapy patients.