Anna Cox

Communication and informed consent in phase 1 trials: a review of the literature

Phase 1 (P1) trials are vital to the development of cancer treatments; however, the patients involved in these trials are unlikely to receive any therapeutic benefit, and there are significant possibilities that they will experience serious side effects. Ethical requirements stipulate that patients must be adequately informed before they consent to participate in P1 trials. This review focuses on studies that have measured patient comprehension of information given during the informed consent process of P1 cancer trials. Patients consenting to participate in P1 trials currently have a limited understanding of trial purpose, an unrealistic expectation of the benefits and risks associated with trial participation and a questionable appreciation of their right to abstain or withdraw. Health care professionals recruiting to P1 trials need clear and practical guidelines and training packages designed to ensure that all details of P1 trials are communicated effectively to eligible patients.

Nurse led telephone follow up in ovarian cancer: A psychosocial perspective

Survivorship is a relatively new concept in ovarian cancer due to improvements in diagnosis, surgery and chemotherapy. As more women require long term follow up for ovarian cancer the pressure on these services is increased and the question of how best to care for these women needs to be addressed. This paper considers the results of a pilot study of nurse led telephone follow up in ovarian cancer from a psychosocial perspective. Fifty-two women received telephone follow up over a 10-month period; one aspect of this intervention was the opportunity for women to discuss psychosocial concerns with the clinical nurse specialist. A nurse database held records of patient discussions, and patient feedback regarding the service was collected using FACT Ovarian quality of life questionnaire, plus the satisfaction and experience with follow up questionnaire. Thirty-three women were recorded as discussing psychological concerns with the nurse, 42% discussed feelings of anxiety or depression and 33% discussed fear of disease recurrence. Thirty-nine women were recorded as having discussed social concerns with the nurse, 56% discussed their family (husband, children, etc.), 51% discussed work and/or finances, and 41% discussed sexual intimacy. The majority of women (73%) expressed a preference for nurse led telephone follow up, the main advantages were reported as the relationship and discussions between the patient and the nurse, and the convenience of having follow up appointments over the phone instead of attending clinic. This pilot study suggests that nurse led telephone follow up offers an acceptable opportunity for psychosocial support for women with ovarian cancer.

The acceptability of e-technology to monitor and assess patient symptoms following palliative radiotherapy for lung cancer:

E-technology is increasingly used in oncology to obtain self-reported symptom assessment information from patients, although its potential to provide a clinical monitoring tool in palliative care is relatively unexplored in the UK. This study aimed to evaluate the support provided to lung cancer patients post palliative radiotherapy using a computerized assessment tool and to determine the clinical acceptability of the tool in a palliative care setting. However, of the 17 clinicians identified as managing patients who met the initial eligibility criteria for the study, only one clinician gave approval for their patient to be contacted regarding participation, therefore the benefits of this novel technology could not be assessed. Thirteen key clinicians from the centres involved in the study were subsequently interviewed. They acknowledged potential benefits of incorporating computerized patient assessment from both a patient and practice perspective, but emphasized the importance of clinical intuition over standardized assessment. Although clinicians were positive about palliative care patients participating in research, they felt that this population of patients were normally too old, with too rapidly deteriorating a condition to participate in a study using e-technology. In order to encourage acceptance of e-technology within palliative care, emphasis is needed on actively promoting the contribution of technologies with the potential to improve patient outcomes and the patient experience.

Cancer Survivors’ Experience With Telehealth: A Systematic Review and Thematic Synthesis

Background Net survival rates of cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer the care of cancer survivors—individuals living with and beyond cancer—to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and health care professionals (HCPs), is an important contributor to this evolving model of care. Telehealth interventions are “complex,” and understanding patient experiences of them is important in evaluating their impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth are yet to be synthesized. Objective To systematically identify, appraise, and synthesize qualitative research evidence on the experiences of adult cancer survivors participating in telehealth interventions, to characterize the patient experience of telehealth interventions for this group. Methods Medline (PubMed), PsychINFO, Cumulative Index for Nursing and Allied Health Professionals (CINAHL), Embase, and Cochrane Central Register of Controlled Trials were searched on August 14, 2015, and March 8, 2016, for English-language papers published between 2006 and 2016. Inclusion criteria were as follows: adult cancer survivors aged 18 years and over, cancer diagnosis, experience of participating in a telehealth intervention (defined as remote communication or remote monitoring with an HCP delivered by telephone, Internet, or hand-held or mobile technology), and reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) checklist for qualitative research was used to assess paper quality. The results section of each included article was coded line by line, and all papers underwent inductive analysis, involving comparison, reexamination, and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies. Results Across the 22 included papers, 3 analytical themes emerged, each with 3 descriptive subthemes: (1) influence of telehealth on the disrupted lives of cancer survivors (convenience, independence, and burden); (2) personalized care across physical distance (time, space, and the human factor); and (3) remote reassurance—a safety net of health care professional connection (active connection, passive connection, and slipping through the net). Telehealth interventions represent a convenient approach, which can potentially minimize treatment burden and disruption to cancer survivors’ lives. Telehealth interventions can facilitate an experience of personalized care and reassurance for those living with and beyond cancer; however, it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden. Conclusions Telehealth interventions can provide cancer survivors with independence and reassurance. Future telehealth interventions need to be developed iteratively in collaboration with a broad range of cancer survivors to maximize engagement and benefit.

‘They’re survivors physically but we want them to survive mentally as well’: health care professionals’ views on providing potential late effect information

PurposeThe concept of providing personalised care plans for cancer survivors is receiving increasing attention; a recognised element of a care plan is to provide an indication of the risks and consequences of treatment. This paper reports health care professional (HCP) response to providing cancer survivors with information on potential late effects of their cancer treatment.MethodsEighteen HCPs from five cancer centres and three general practices in the UK completed semi-structured interviews which were digitally recorded, transcribed and qualitatively analysed using framework analysis.ResultsHCPs’ view of health care was that it is currently focused on acute care and needs are responded to as they may arise, including those which are late effects of cancer treatments. The concept of pre-empting a discussion of potential late effects during the survivorship phase was felt to be discordant with this approach and could impact on adjustment to life after cancer treatment.ConclusionProviding cancer survivors with information on potential late effects requires further consideration. Evidence for survivor preference for late effect information and the benefit afforded to survivors who receive it could inform the practice of HCPs. If a culture of proactivity is to be encouraged regarding discussions of future potential risk, HCPs may need support in considering ways of presenting survivors with reality whilst being mindful of their need to retain hope during the survivorship phase.

The preferences of 600 patients for different descriptions of randomisation

A total of 600 patients from cancer centres throughout the UK identified their most preferred and most disliked descriptions of randomisation found in current patient information sheets and websites. The CancerBACUP description, which describes both the process of randomisation and why it is done, was most preferred 151 out of 533 (28%) patients. The NCI description was viewed as overly technical and most disliked 185 out of 483 (38%) patients.

Psychological rumination and recovery from work in intensive care professionals: associations with stress, burnout, depression and health

BackgroundThe work demands of critical care can be a major cause of stress in intensive care unit (ICU) professionals and lead to poor health outcomes. In the process of recovery from work, psychological rumination is considered to be an important mediating variable in the relationship between work demands and health outcomes. This study aimed to extend our knowledge of the process by which ICU stressors and differing rumination styles are associated with burnout, depression and risk of psychiatric morbidity among ICU professionals.MethodsNinety-six healthcare professionals (58 doctors and 38 nurses) who work in ICUs in the UK completed a questionnaire on ICU-related stressors, burnout, work-related rumination, depression and risk of psychiatric morbidity.ResultsSignificant associations between ICU stressors, affective rumination, burnout, depression and risk of psychiatric morbidity were found. Longer working hours were also related to increased ICU stressors. Affective rumination (but not problem-solving pondering or distraction detachment) mediated the relationship between ICU stressors, burnout, depression and risk of psychiatric morbidity, such that increased ICU stressors, and greater affective rumination, were associated with greater burnout, depression and risk of psychiatric morbidity. No moderating effects were observed.ConclusionsLonger working hours were associated with increased ICU stressors, and increased ICU stressors conferred greater burnout, depression and risk of psychiatric morbidity via increased affective rumination. The importance of screening healthcare practitioners within intensive care for depression, burnout and psychiatric morbidity has been highlighted. Future research should evaluate psychological interventions which target rumination style and could be made available to those at highest risk. The efficacy and cost effectiveness of delivering these interventions should also be considered.

Predictive Modelling of Patient Reported Radiotherapy-Related Toxicity by the Application of Symptom Clustering and Autoregression

Patient reported outcome measures (PROMs) are increasingly being used in research to explore experiences of cancer survivors. Techniques to predict symptoms, with the aim of providing triage care, rely on the ability to analyse trends in symptoms or quality of life and at present are limited. The secondary analysis in this study uses a statistical method involving the application of autoregression (AR) to PROMs in order to predict symptom intensity following radiotherapy, and to explore its feasibility as an analytical tool. The technique is demonstrated using an existing dataset of 94 prostate cancer patients who completed a validated battery of PROMs over time. In addition the relationship between symptoms was investigated and symptom clusters were identified to determine their value in assisting predictive modeling. Three symptom clusters, namely urinary, gastrointestinal and emotional were identified. The study indicates that incorporating symptom clustering into predictive modeling helps to identify the most informative predictor variables. The analysis also showed that the degree of rise of symptom intensity during radiotherapy has the ability to predict later radiotherapy-related symptoms. The method was most successful for the prediction of urinary and gastrointestinal symptoms. Quantitative or qualitative prediction was possible on different symptoms. The application of this technique to predict radiotherapy outcomes could lead to increased use of PROMs within clinical practice. This in turn would contribute to improvements in both patient care after radiotherapy and also strategies to prevent side effects. In order to further evaluate the predictive ability of the approach, the analysis of a larger dataset with a longer follow up was identified as the next step.

Establishing Priorities for Oncology Nursing Research: Nurse and Patient Collaboration

Purpose/Objectives: To obtain consensus on priorities for oncology nursing research in the United Kingdom. Design: A three‐round online Delphi survey. Setting: Oncology nurses were invited via the United Kingdom Oncology Nursing Society (UKONS) database. Patient participation was invited through patient organizations. Sample: 50 oncology nurses and 18 patients. Methods: Eligible and consenting individuals reported five priorities for oncology nursing research (round 1), rated their level of agreement with them (round 2), and restated and revised their responses in light of the group’s responses (round 3). Consensus was defined as 80% agreement. Main Research Variables: Research priorities for oncology nursing as reported by oncology nurses and patients. Findings: Consensus was reached on 50 of 107 research priorities. These priorities reflected the entire cancer pathway, from diagnosis to palliative care. Highest agreement was reached within and across groups on the need for research relating to prevention, screening, early diagnosis, and psychological care across the cancer trajectory. Little consensus was reached regarding symptoms and side effects. Some evident divergence existed: Only patients reached consensus regarding palliative care research, and only nurses reached consensus regarding eHealth and technology research. Conclusions: Oncology nurses and patients do not necessarily prioritize the same research areas. Prevention, screening, and early diagnosis are of the highest priority for future research among oncology nurses and patients. Implications for Nursing: Patients usually play little part in priority setting for research. This study provided the opportunity for meaningful patient and nurse involvement in setting a research agenda for oncology nursing that is relevant and beneficial to oncology nurses and patients.

Developing, implementing and evaluating an end of life care intervention

Aim To develop, implement and evaluate a collaborative intervention in care homes seeking to increase the confidence and competence of staff in end of life care and enable more people to receive end of life care in their usual place of residence. Method A two-phase exploratory mixed methods design was used, evaluating the effect of an end of life care toolkit and associated training in care homes, facilitated by a specialist palliative care team. Six care homes in England were recruited to the intervention; 24 staff participated in discussion groups; 54 staff attended at least one training session; and pre- and post-intervention questionnaires were completed by 78 and 103 staff respectively. Results Staff confidence in receiving emotional and clinical support and managing end of life care symptoms increased post-intervention, but confidence in discussing death and dying with residents and relatives decreased. Audit data indicate greater reduction in the number of residents from participating care homes dying in hospital than those from comparison homes. Conclusion Collaborative end of life care interventions support care home staff to manage end of life and may enable residents to have choice about their place of death.