Theresa Wiseman

Using patients' experiences to identify priorities for quality improvement in breast cancer care: patient narratives, surveys or both?

BackgroundPatients’ experiences have become central to assessing the performance of healthcare systems worldwide and are increasingly being used to inform quality improvement processes. This paper explores the relative value of surveys and detailed patient narratives in identifying priorities for improving breast cancer services as part of a quality improvement process.MethodsOne dataset was collected using a narrative interview approach, (n = 13) and the other using a postal survey (n = 82). Datasets were analyzed separately and then compared to determine whether similar priorities for improving patient experiences were identified.ResultsThere were both similarities and differences in the improvement priorities arising from each approach. Day surgery was specifically identified as a priority in the narrative dataset but included in the survey recommendations only as part of a broader priority around improving inpatient experience. Both datasets identified appointment systems, patients spending enough time with staff, information about treatment and side effects and more information at the end of treatment as priorities. The specific priorities identified by the narrative interviews commonly related to ‘relational’ aspects of patient experience. Those identified by the survey typically related to more ‘functional’ aspects and were not always sufficiently detailed to identify specific improvement actions.ConclusionsOur analysis suggests that whilst local survey data may act as a screening tool to identify potential problems within the breast cancer service, they do not always provide sufficient detail of what to do to improve that service. These findings may have wider applicability in other services. We recommend using an initial preliminary survey, with better use of survey open comments, followed by an in-depth qualitative analysis to help deliver improvements to relational and functional aspects of patient experience.

Working while receiving chemotherapy: a survey of patients' experiences and factors that influence these

The purpose of this study was to estimate the number of patients who continue to work when undergoing ambulatory chemotherapy and to identify personal or treatment-related factors that influence this. Patients undergoing final cycles of adjuvant chemotherapy for breast or colorectal cancer or first-line chemotherapy for lymphoma at two cancer treatment centres were approached to take part in a cross sectional survey (n= 55, RR 55%). Sixty-four per cent (n= 35) of respondents were working when cancer was diagnosed. Fifty-four per cent (n= 19) of respondents were working when chemotherapy began but as treatment progressed only 29% (n= 10) continued to work in any capacity. The most important influencing factor when making decisions about work was the need to concentrate on looking after oneself. Overall, respondents found their employers and colleagues supportive but there was some evidence they became less supportive as treatment progressed. While this was a small study it highlights the need for health care professionals to understand patients needs and wishes in relation to work while undergoing chemotherapy by including this issue as part of routine assessment. Strategies to allow those who wish to continue to work during treatment should be put in place early to support this.

Concepts of mental capacity for patients requesting assisted suicide: a qualitative analysis of expert evidence presented to the Commission on Assisted Dying

BackgroundIn May 2013 a new Assisted Dying Bill was tabled in the House of Lords and is currently scheduled for a second reading in May 2014. The Bill was informed by the report of the Commission on Assisted Dying which itself was informed by evidence presented by invited experts.This study aims to explore how the experts presenting evidence to the Commission on Assisted Dying conceptualised mental capacity for patients requesting assisted suicide and examine these concepts particularly in relation to the principles of the Mental Capacity Act 2005.MethodsThis study was a secondary qualitative analysis of 36 transcripts of oral evidence and 12 pieces of written evidence submitted by invited experts to the Commission on Assisted Dying using a framework approach.ResultsThere was agreement on the importance of mental capacity as a central safeguard in proposed assisted dying legislation. Concepts of mental capacity, however, were inconsistent. There was a tendency towards a conceptual and clinical shift toward a presumption of incapacity. This appeared to be based on the belief that assisted suicide should only be open to those with a high degree of mental capacity to make the decision.The ‘boundaries’ around the definition of mental capacity appeared to be on a continuum between a circumscribed legal ‘cognitive’ definition of capacity (in which most applicants would be found to have capacity unless significantly cognitively impaired) and a more inclusive definition which would take into account wider concepts such as autonomy, rationality, voluntariness and decision specific factors such as motivation for decision making.ConclusionIdeas presented to the Commission on Assisted Dying about mental capacity as it relates to assisted suicide were inconsistent and in a number of cases at variance with the principles of the Mental Capacity Act 2005. Further work needs to be done to establish a consensus as to what constitutes capacity for this decision and whether current legal frameworks are able to support clinicians in determining capacity for this group.

Exploring patient perception of success and benefit in self-management of breast cancer-related arm lymphoedema

PURPOSE The aim of this study was to identify factors influencing patient perception of success and benefit with self-management of breast cancer-related lymphoedema (BCRL) and explore how patients decide whether their swollen limb has improved or deteriorated. METHODS This qualitative study used a Grounded Theory approach. Twenty-one women in the BCRL self-management phase participated in one in-depth interview exploring their experience and perspective on self-managing their BCRL. FINDINGS Seven enablers and blocks to self-management were identified: routine, recognising benefit of self-management and consequences of non-treatment, owning treatment, knowledge and understanding, problem-solving, time required for treatment and aesthetics of hosiery. Women determined treatment outcome by monitoring size, appearance, texture and internal sensations within the affected arm. CONCLUSIONS Women who participated in this study showed varying degrees of acceptance and adjustment to life with lymphoedema. This appears to directly impact their ability to self-manage lymphoedema. Lymphoedema practitioners and oncology nurses have a valuable role providing knowledge and support to patients transitioning to independent self-care. A better understanding of factors facilitating patients to become experts in their condition may improve longer term outcomes and reduce cost pressures on lymphoedema services.

Time to act: The challenges of working during and after cancer. Initiatives in research and practice

NOTICE: this is the author’s version of a work that was accepted for publication in European Journal of Oncology Nursing. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in European Journal of Oncology Nursing, 18, 1, (Feb 2014). DOI:10.1016/j.ejon.2014.01.001

Toward a holistic conceptualization of empathy for nursing practice.

This article proposes a new holistic conceptualization of empathy for nursing practice that allows different aspects of the literature to be understood. This study is based on the data of a doctoral study exploring the nature of empathy on an oncology ward. The findings revealed that empathy is not a single phenomenon. Four different forms of empathy were identified, namely, empathy as an incident, empathy as a way of knowing, empathy as a process, and empathy as a way of being. These different forms of empathy can be understood in terms of a continuum of empathy development and suggest a new way of conceptualizing empathy that can be depicted diagrammatically.

Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use

Background: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. Aim: To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties. Design: A systematic literature review and analysis of psychometric properties. Data sources: PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed. Results: From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly. Conclusion: There is currently no ‘ideal’ outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field.

Insights into the experiences of patients with cancer in London : framework analysis of free-text data from the National Cancer Patient Experience Survey 2012/2013 from the two London Integrated Cancer Systems

Objective To shed light on experiences of patients with cancer in London National Health Service (NHS) trusts that may not be fully captured in national survey data, to inform improvement action plans by these trusts. Design Framework analysis of free-text data from 2012/2013 National Cancer Patient Experience Survey (NCPES) from the 2 London Integrated Cancer Systems. Setting and participants Patients with a cancer diagnosis treated by the NHS across 27 trusts in London. Main outcome measures Free-text data received from patients categorised into what patients found good about their cancer care and what could be improved. Methods Using Framework analysis, a thematic framework was created for 15 403 comments from over 6500 patients. Themes were identified across the London data set, by tumour group and by trust. Results Two-thirds of free-text comments from patients in London were positive and one-third of those related to the good quality of care those patients received. However, the majority of comments for improvement related to quality of care, with a focus on poor care, poor communication and waiting times in outpatient departments. Additionally, 577 patients (9% of those who returned free-text data in London) commented on issues pertaining to the questionnaire itself. Some patients who experienced care from multiple trusts were unclear on how to complete the questionnaire for the single trust whose care they were asked to comment on, others said the questions did not fit their experiences. Conclusions NCPES free-text analysis can shed light on the experiences of patients that closed questions might not reveal. It further indicates that there are issues with the survey itself, in terms of ambiguities in the questionnaire and difficulties in identifying patients within specific trusts. Both of these issues have the potential to contribute to knowledge and understanding of the uses and limitations of free-text data in improving cancer services.

Recognizing European cancer nursing: Protocol for a systematic review and meta-analysis of the evidence of effectiveness and value of cancer nursing

AIM To identify, appraise and synthesize the available evidence relating to the value and impact of cancer nursing on patient experience and outcomes. BACKGROUND There is a growing body of literature that recognizes the importance and contribution of cancer nurses, however, a comprehensive review examining how cancer nurses have an impact on care quality, patient outcomes and overall experience of cancer, as well as cost of services across the entire cancer spectrum is lacking. DESIGN A systematic review and meta-analysis using Cochrane methods. METHODS We will systematically search 10 electronic databases from 2000, with pre-determined search terms. No language restrictions will be applied. We will include all randomized and controlled before-and-after studies that compare cancer nursing interventions to a standard care or no intervention. Two reviewers will independently assess the eligibility of the studies and appraise methodological quality using the Cochrane Risk of Bias tool. Disagreements will be resolved by discussion and may involve a third reviewer if necessary. Data from included studies will be extracted in accordance with the Template for intervention Description and Replication reporting guidelines. Missing data will be actively sought from all trialists. Data will be synthesized in evidence tables and narrative to answer three key questions. If sufficient data are available, we will perform meta-analyses. DISCUSSION This review will allow us to systematically assess the impact of cancer nursing on patient care and experience. This evidence will be used to determine implications for clinical practice and used to inform future programme and policy decisions in Europe.

Assessment of sexual difficulties associated with multi-modal treatment for cervical or endometrial cancer: a systematic review of measurement instruments

BACKGROUND Practitioners and researchers require an outcome measure that accurately identifies the range of common treatment-induced changes in sexual function and well-being experienced by women after cervical or endometrial cancer. This systematic review critically appraised the measurement properties and clinical utility of instruments validated for the measurement of female sexual dysfunction (FSD) in this clinical population. METHODS A bibliographic database search for questionnaire development or validation papers was completed and methodological quality and measurement properties of selected studies rated using the Consensus-based Standards for the selection of health Measurement Instrument (COSMIN) checklist. RESULTS 738 articles were screened, 13 articles retrieved for full text assessment and 7 studies excluded, resulting in evaluation of 6 papers; 2 QoL and 4 female sexual morbidity measures. Five of the six instruments omitted one or more dimension of female sexual function and only one instrument explicitly measured distress associated with sexual changes as per DSM V (APA 2013) diagnostic criteria. None of the papers reported measurement error, responsiveness data was available for only two instruments, three papers failed to report on criterion validity, and test-retest reliability reporting was inconsistent. Heterosexual penile-vaginal intercourse remains the dominant sexual activity focus for sexual morbidity PROMS terminology and instruments lack explicit reference to solo or non-coital sexual expression or validation in a non-heterosexual sample. Four out of six instruments included mediating treatment or illness items such as vaginal changes, menopause or altered body image. CONCLUSIONS Findings suggest that the Female Sexual Function Index (FSFI) remains the most robust sexual morbidity outcome measure, for research or clinical use, in sexually active women treated for cervical or endometrial cancer. Development of an instrument that measures sexual dysfunction in women who are infrequently/not sexually active due to treatment consequences is still required to identify women in need of sexual rehabilitation.