Sally Taylor

Discussion of emotional and social impact of cancer during outpatient oncology consultations

Objective: Following publication of national guidelines on detection and management of psychosocial problems in oncology, this study explores frequency of discussion of emotional and social issues in outpatient oncology consultations.

Interventions for sexual problems following treatment for breast cancer: a systematic review.

Sexual functioning is an important element of quality of life. Many women experience sexual problems as a result of a breast cancer diagnosis and its treatment. Little is known about the availability and the effectiveness of interventions for sexual problems in this patient population. Six electronic databases were searched using Medical Subject Headings and keywords. Additional hand searching of the references of relevant papers was also conducted. The searches were conducted between October 2010 and January 2011. Papers were included if they evaluated interventions for sexual problems caused as a result of breast cancer or its treatment. Studies were only included if sexual functioning was reported using a patient-reported outcome questionnaire. Studies were excluded if sexual functioning was measured but improving sexual problems was not one of the main aims of the intervention. 3514 papers were identified in the initial search. 21 papers were selected for inclusion. Studies were of mixed methodological quality; 15 randomised trials were identified, many included small sample sizes and the use of non-validated questionnaires. Three main types of interventions were identified: Exercise (2), medical (2) and psycho-educational (17). The psycho-educational interventions included skills-based training such as problem-solving and communication skills, counselling, hypnosis, education and specific sex-therapies. Interventions were delivered to individual patients, patients and their partners (couple-based) and groups of patients. The widespread methodological variability hinders the development of a coherent picture about which interventions work for whom. Tentative findings suggest the most effective interventions are couple-based psycho-educational interventions that include an element of sexual therapy. More methodologically strong research is needed before any intervention can be recommended for clinical practice. Improved screening and classification of sexual problems will ensure interventions can be more effectively targeted to suit individual patient needs.

Managing social difficulties: roles and responsibilities of patients and staff.

Background: Implementation of guidance on assessment and management of psychosocial and supportive‐care problems or needs will be successful only if consideration is given to existing skills, experience and expectations of staff and patients. This study examines the roles and responsibilities of staff, patients and families in relation to management of social difficulties and proposes a pathway for response.

Information and communication technology for managing pain in palliative care: a review of the literature

Background Information and communication technology (ICT) systems are being developed for electronic symptom reporting across different stages of the cancer trajectory with research in palliative care at an early stage. Aim/design This paper presents the first systematic search of the literature to review existing ICT systems intended to support management of pain in palliative care patients with cancer. The review was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for systematic reviews and meta-analyses. Data sources Four databases (Embase, MEDLINE, PsycINFO and Healthcare Management Information Consortium) from 1990 to December 2012 were searched, with exclusion of papers based on their description of ICT systems and language used. Results 24 articles met the inclusion criteria, many of which reported the use of non-experimental research designs. Studies were identified at different stages of development with no systems having reached implementation. Most systems captured pain as part of quality-of-life measurement with wide variation in approaches to pain assessment. Conclusions ICT systems for symptom reporting are emerging in the palliative care context. Future development of ICT systems need to increase the quality and scale of development work, consider how recommendations for pain measurement can be integrated and explore how to effectively use system feedback with patients.

Identifying professionals’ needs in integrating electronic pain monitoring in community palliative care services: An interview study:

Background: Poor pain assessment is a barrier to effective pain control. There is growing interest internationally in the development and implementation of remote monitoring technologies to enhance assessment in cancer and chronic disease contexts. Findings describe the development and testing of pain monitoring systems, but research identifying the needs of health professionals to implement routine monitoring systems within clinical practice is limited. Aim: To inform the development and implementation strategy of an electronic pain monitoring system, PainCheck, by understanding palliative care professionals’ needs when integrating PainCheck into routine clinical practice. Design: Qualitative study using face-to-face interviews. Data were analysed using framework analysis Setting/participants: Purposive sample of health professionals managing the palliative care of patients living in the community Results: A total of 15 interviews with health professionals took place. Three meta-themes emerged from the data: (1) uncertainties about integration of PainCheck and changes to current practice, (2) appraisal of current practice and (3) pain management is everybody’s responsibility Conclusion: Even the most sceptical of health professionals could see the potential benefits of implementing an electronic patient-reported pain monitoring system. Health professionals have reservations about how PainCheck would work in practice. For optimal use, PainCheck needs embedding within existing electronic health records. Electronic pain monitoring systems have the potential to enable professionals to support patients’ pain management more effectively but only when barriers to implementation are appropriately identified and addressed.

The Feasibility of Collecting Patient Reported Pain Data Using a System Delivered Across Four Modes of Technology

Dear Editor: Chronic pain is a significant problem ⇓ that is often poorly managed ⇓. Electronic tools could be used to facilitate routine collection of various patient reported symptoms including pain ⇓. Data collected electronically has the potential to improve supportive care ⇓ and influence treatment management decisions ⇓. Traditionally electronic pain monitoring has been collected using personal computers (PCs) or laptops. With advances in technology, other methods of collecting this data have become more common ⇓. A limitation of existing pain monitoring tools is that assessments are designed to be completed using only one electronic device or mode of data collection. A literature search identified no studies exploring the capabilities of a single system that could be used on multiple devices interchangeably. We evaluated an early prototype of a pain reporting system that could be completed using various modes of technology interchangeably. The study aimed to determine feasibility of collecting pain data using a system accessed through different modes of technology, to explore …

Breast Cancer, Sexuality, and Intimacy: Addressing the Unmet Need.

To the Editor: Breast cancer is the most commonly diagnosed female cancer with more than 1.7 million new cases in 2012 (1). Sexuality and intimacy problems caused by breast cancer diagnosis and treatment affect large proportions of women (2). Some problems are expected to resolve after treatment (3) while others last for many years (4,5). Sexual activity may not be a priority for all women, particularly during treatment (6) but sexuality and intimacy are an important element of quality of life (7). Despite recognition of the importance of sexual issues to patients, there is a lack of effective support services and interventions (8). The aim of this qualitative study was to: explore the extent of sexual problems in terms of their severity for individuals; examine coping mechanisms and existing support services and determine how patients’ experiences might be improved. Leeds West NHS Research Ethics Committee provided ethical approval. Eleven women with current or previous experience of breast cancer-related sexuality or intimacy problems were recruited. Participants’ age ranged from 33 to 56, the majority (n = 6) were married and had early breast cancer (n = 8). All participants had received surgery (2 mastectomy, 3 mastectomy with reconstruction, and 6 wide local excision). The majority of participants (n = 9) had also received at least one other form of treatment. A researcher (ST) conducted semistructured interviews (19–39 minutes, median 33 minutes) examining: medical background and diagnosis; relationship and family background; impact of diagnosis and treatment; impact on sexuality and intimacy; and access to support. Interviews were audio-recorded and transcribed verbatim. Thematic analysis identified four themes. 1. Sexuality and intimacy problems. Body image concerns were prevalent regardless of the type of surgery women had received. I wasn’t sure if I could deal with what I’m now left with which is sort of a lumpy breast and loads of scars. Body image seemed less important to women with advanced disease. Women who had received endocrine therapy experienced vaginal dryness making sexual intercourse painful or sometimes impossible. Additional complications were loss of breast sensation, inability to orgasm, or reduced libido. 2. Impact on emotions and relationships. Women felt angry and sad about their changed bodies and the impact on their sexual function I just feel that the way I wanted to do it is no longer possible and I’m pi**ed off, I’m not pi**ed off I’m very sad. Some women’s experiences were so severe and had such a profound impact on their lives; they considered potentially risky treatment changes to improve their sexual function. Many participants experienced a relationship breakdown. Women expressed a need to focus on survival or felt they were protecting themselves from the pain of not being sexually active. 3. Coping mechanisms. Some women felt the most effective coping mechanisms were to deal with the issue themselves. Others, sought medical advice from GPs, oncologists or specialist nurses and occasionally, women were referred to more specialist services. I talk to my oncologist. . .and he admitted that he. . . didn’t know what to offer to help so he referred me to the menopause clinic. The majority of participants had accessed services such as counseling, holistic treatments, and therapies and some had seen psychologists or psychotherapists. These services focused on emotional experiences rather than sex or intimacy. 4. How can experiences be improved? Participants felt their experiences could be improved with: more information; increased availability of support services; a designated sexuality and intimacy contact within the clinical team. Breast cancer and its treatment can have a devastating effect on sexuality. A striking finding from this research Address correspondence and reprint requests to: Sally Taylor, PhD, Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, West Yorkshire, UK, or e-mail: s.s.taylor@leeds.ac.uk Joint senior authors.

Detecting and discussing sexual problems during chemotherapy for breast cancer.

To the Editor: The breast is a unique symbol of femininity playing an important role in body image, self-esteem, as well as sexual pleasure and stimulation (1). Treatment of breast cancer through surgery, chemotherapy, radiotherapy, hormone therapy, or a combination may cause immediate or delayed side effects that impair sexual function (e.g., dyspareunia, vaginal dryness, or reduced libido) (2,3). If left unaddressed, sexual function problems may significantly impair patients’ quality-of-life (QOL). Physicians are not only responsible for treating and caring for patients, they are also gatekeepers to support services. For good reason, patient–physician interactions tend to focus on disease symptoms and side effects during the treatment periods, and consequently may omit to discuss certain aspects of QOL including sexual function (4). Research suggests that discussion of sexual function may be disproportionately hindered by communication barriers (5). In this study, we examined the prevalence of dissatisfaction with sexual function during chemotherapy for breast cancer through patient self-report (Functional Assessment of Cancer Therapy-General [FACT-G] questionnaire (6)). We then examined whether those reporting sexual dissatisfaction discussed this issue with their physician during outpatient consultations. Subsequently, we interviewed 10 patients and 10 health professionals about their opinions of routine assessment and discussion of sexual function to identify ways in which current practice could be enhanced. Fifty-two patients completed the FACT-G questionnaire (mean age 53.4; SD 10.15, 44% curative, 56% palliative). Twenty-six (50%) completed the satisfaction with sex-life item and of these, eight (15% of the total sample) reported dissatisfaction with sexual function. Older patients were more likely to omit completing the sex-life item. Four consecutive outpatient consultations were audio-recorded for each of the 52 study patients. Physicians did not receive patients’ FACT-G scores. Despite 15% of patients reporting dissatisfaction with sexual function, sexual problems were not discussed in any of the 208 consultations. Menopause and fertility issues were discussed in one consultation (33-yearold patient). Relationships and partner support were discussed in 12 consultations. Thematic analysis of interviews with patients identified that assessment of sexual function using PROMs was acceptable. One patient indicated that they found the questions a little embarrassing, but they were not offended by being asked to answer them. Another patient said that they were happy to answer sexual function questions as sexuality was an important aspect of their overall well-being. Two patients (one early stage, one metastatic disease) did not feel that sexual function was particularly relevant to their treatment. Both women, however, could see that the questions may be relevant to some breast cancer patients. Some of the interviewees said that they would probably speak to a nurse if they had concerns about sexual function, whereas other women felt that they would deal with the issue themselves or with their partner. Women often felt that at the time of chemotherapy treatment, sexual issues were not a particular priority, but may be in the future if the problem persists. Thematic analysis of interviews with 10 health care professionals (two medical oncology consultants, three clinical oncology consultants, two registrars, and three specialist nurses) identified several barriers to discussion of sexual issues. Physicians often regarded patients’ age as a barrier. They felt that older women may not want to talk about sexual issues particularly with a physician who was younger than them. Male physicians also said that they would feel uncomfortable raising sexual issues with female patients. Address correspondence and reprint requests to: Sally Taylor, Psychosocial Oncology and Clinical Practice Research Group, St James’s Institute of Oncology, University of Leeds, Leeds, UK, or e-mail: s.s.taylor@leeds.ac. uk Joint senior authors.

Understanding patient requirements for technology systems that support pain management in palliative care services: A qualitative study:

Approaches to pain management using electronic systems are being developed for use in palliative care. This article explores palliative care patients’ perspectives on managing and talking about pain, the role of technology in their lives and how technology could support pain management. Face-to-face interviews were used to understand patient needs and concerns to inform how electronic systems are developed. A total of 13 interviews took place with a convenience sample of community-based patients with advanced cancer receiving palliative care through a hospice. Data were analysed using framework analysis. Four meta-themes emerged: Technology could be part of my care; I’m trying to understand what is going on; My pain is ever-changing and difficult to control; and I’m selective about who to tell about pain. Patients described technology as peripheral to existing processes of care. To be relevant, systems may need to take account of the complexity of a patient’s pain experience alongside existing relationships with health professionals.

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol

Introduction For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care. Methods and analysis This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings. Ethics and dissemination Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups.