Maxine Stead

Lack of communication between healthcare professionals and women with ovarian cancer about sexual issues

Gynaecological cancer has been shown to affect womens sexual functioning, yet evidence suggests that healthcare professionals rarely discuss sexual issues with women diagnosed with a gynaecological cancer. Few studies have investigated why there is a lack of communication between healthcare professionals and women about sexual issues. Our study investigated the attitudes and behaviours of the 27 doctors and 16 nurses treating women with ovarian cancer in our centre towards the discussion of sexual issues, and also investigated womens experiences of such communication. Our findings showed that although most healthcare professionals thought that the majority of women with ovarian cancer would experience a sexual problem, only a quarter of doctors and a fifth of nurses actually discussed sexual issues with the women. Reasons for not discussing sexual issues included ‘it is not my responsibility’, ‘embarrassment’, ‘lack of knowledge and experience’ and ‘lack of resources to provide support if needed’. While some of these reasons were also viewed as barriers by the women, the results demonstrate that there is a need from the womens perspective to improve communication about sexual issues, although the most appropriate approach to this remains to be investigated.

Communication about sexual problems and sexual concerns in ovarian cancer: a qualitative study

The assumption that ovarian cancer and its treatment (hysterectomy, oophorectomy, and chemotherapy) have considerable psychosexual effects is reasonable. Studies in other gynaecological cancers show that sexual activity is affected and that communication about this topic is poor.1–4 These issues have been neglected in ovarian cancer, so this qualitative study explored its psychosexual impact and the level of communication between women and healthcare professionals about sexual issues. Participants, methods, and results Detailed interviews were conducted with 15 women with ovarian cancer (median age 56 (range 42-71) years, median time since diagnosis 18 (8-120) months) who were identified from a sampling survey as sexually active or as inactive for reasons related to the condition. Topics included pre-diagnostic and current sexual behaviour and response, satisfaction with sex life, and importance of sex. Interviews were audiotaped, transcribed verbatim, and analysed using grounded theory methods,5 starting after the first interview. Each author read the transcript, noting themes and issues, and concepts pertaining to similar issues were grouped into categories. As more interviews were conducted, a thematic framework of the categories and their associated themes was produced, and this was systematically applied to each transcript, searching for evidence of the categories and themes. Semistructured interviews were conducted with the women and 43 clinicians and nurses in Leeds to determine their attitudes about, and experiences of, written or verbal communication about sex. Local research ethics committee approval was granted.

Maintenance treatment with interferon for advanced ovarian cancer: results of the Northern and Yorkshire gynaecology group randomised phase III study

A randomised phase III trial was conducted to assess the role of interferon-alpha (INFα) 2a as maintenance therapy following surgery and/or chemotherapy in patients with epithelial ovarian carcinoma. Patients were randomised following initial surgery/chemotherapy to interferon-alpha 2a as 4.5 mega-units subcutaneously 3 days per week or to no further treatment. A total of 300 patients were randomised within the study between February 1990 and July 1997. No benefit for interferon maintenance was seen in terms of either overall or clinical event-free survival. We conclude that INF-α is not effective as a maintenance therapy in the management of women with ovarian cancer. The need for novel therapeutics or strategies to prevent the almost inevitable relapse of patients despite increasingly effective surgery and chemotherapy remains.

Development of an EORTC questionnaire module to be used in health‐related quality‐of‐life assessment for patients with multiple myeloma

A multiple myeloma‐specific quality‐of‐life questionnaire module has been designed in collaboration with the EORTC Quality‐of‐Life Study Group to be used in clinical trials with the EORTC QLQ‐C30, a general cancer questionnaire. Strict methodology was employed to ensure thorough and appropriate development of the module. An extensive literature review was performed to identify health‐related quality‐of‐life issues relevant to patients with multiple myeloma. Semi‐structured interviews were then carried out in several European countries with health‐care providers experienced in the treatment of patients with multiple myeloma, and with a group of patients with multiple myeloma, to identify the issues which were most important to patients. A questionnaire was devised from the list of issues, using a 1‐week time‐frame and response categories consistent with the EORTC QLQ‐C30. The provisional questionnaire and the EORTC QLQ‐C30 were administered to patients with multiple myeloma in each participating country with further semi‐structured interviews to refine the content and design of the questionnaire. A review of the results obtained in each stage of development resulted in a 24‐item myeloma‐specific module, the EORTC QLQ‐MY24, which assesses disease‐specific symptoms and their impact on everyday life, treatment side‐effects, social support, and future perspective. The module is currently undergoing further international field‐testing to assess its psychometric properties.

Sexual activity questionnaires in clinical trials: acceptability to patients with gynaecological disorders

Objective To assess the feasibility and acceptability of including sexual activity questionnaires in gynaecological clinical trials.

Management of menorrhagia – SMART study (Satisfaction with Mirena and Ablation: a Randomised Trial)

They found that 19/35 women had a recurrence (or persistence) of prolapse after the Burch colposuspension. In contrast, only one (of 33 women) had a recurrent cystocele after anterior vaginal repair, and she was continent and asymptomatic. However, none of the 19 women consented to a subsequent repair, including the six who were deemed symptomatic, presumably because they were not sufficiently troubled by it. Therefore, we do not feel that this ‘disadvantage’ of the Burch colposuspension is sufficient grounds for recommending concomitant primary (vaginal repair) surgery, as the authors suggest. Indeed, combining the data with those from the one other study which reported it’.’ (3183 after anterior repair vs 5/140 after abdominal retropubic suspension), gave an aggravated relative risk of having further prolapse surgery of 1.26, 95% CI 0.3 1-506. This highlights one of the pragmatic drawbacks of objective scoring systems for conditions versus subjective complaint. Also given that hysterectomy was undertaken by different routes in each arm, this in itself could have a confounding influence. On the other hand, the authors found that dyspareunia was more common in the anterior repair group. However, all women who had the vaginal approach also had a posterior repair, whereas only 12/35 women in the Burch group had this additional procedure. Not all the women were sexually active. Could the authors clarify the incidence of dyspareunia amongst the 24 sexually active women in the Burch group who did have a posterior repair, and also compare the consequent shortening of the vaginal lengths in these women with those who had an anterior repair? This would lend weight to their conclusion that routine posterior repair should be abandoned, and only performed after careful consideration of symptoms in sexually active women.

The impact of registration of clinical trials units: The UK experience

Background Over the last decade, the United Kingdom has invested significant resources in its clinical trial infrastructure. Clinical research networks have been formed, and some general oversight functions for clinical research have been centralised. One of the initiatives is a registration programme for Clinical Trials Units involved in the coordination of clinical trials. An international review panel of experts in clinical trials has been convened for three reviews over time, reviewing applications from Clinical Trials Units in the United Kingdom. The process benefited from earlier work by the National Cancer Research Institute that developed accreditation procedures for trials units involved in cancer trials. This article describes the experience with the three reviews of UK Clinical Trials Units which submitted applications. Purpose This article describes the evolution and impact of this registration process from the perspective of the current international review panel members, some of whom have served on all reviews, including two done by the National Cancer Research Institute. Process Applications for registration were invited from all active, non-commercial Clinical Trials Units in the United Kingdom. The invitations were issued in 2007, 2009 and 2012, and applicants were asked to describe their expertise and staffing levels in specific areas. To ensure that the reviews were as objective as possible, a description of expected core competencies was developed and applicants were asked to document their compliance with meeting these. The review panel assessed each Clinical Trials Unit against the competencies. The Clinical Trials Unit registration process has evolved over time with each successive review benefiting from what was learned in earlier ones. Results The review panel has seen positive changes over time, including an increase in the number of units applying, a greater awareness on the part of host institutions about the trials activity within their organisations, more widespread development of Standard Operating Procedures in key areas and improvements in information technology systems used to host clinical trials databases. Key funders are awarding funds only to registered units, and host institutions are implementing procedures and structures to ensure improved communication between all parties involved in trials within their organisation. Conclusion The registration process developed in the United Kingdom has helped to ensure that trials units in the United Kingdom are compliant with regulatory standards and can meet acceptable standards of quality in their conduct of clinical trials. There is an increased awareness among funders, host institutions and Clinical Trials Units themselves of the required competencies, and communication between all those involved in trials has increased. The registration process is an effective and financially viable way of ensuring that objective standards are met at a national level.

An exploratory study of reiki experiences in women who have cancer

AIMS To explore the perceptions and experiences of reiki for women who have cancer and identify outcome measures for an intervention study. METHODS A cross-sectional qualitative study of 10 women who had received reiki after cancer treatment was conducted. Interviews were audiotaped, transcribed and coded using framework analysis. RESULTS Key themes identified were: limited understanding of reiki prior to receiving any reiki; release of emotional strain during reiki-feelings of a release of energy, a clearing of the mind from cancer, inner peace/relaxation, hope, a sense of being cared for; experience of physical sensations during reiki, such as pain relief and tingling; physical, emotional and cognitive improvements after reiki, such as improved sleep, a sense of calm and peace, reduced depression and improved self-confidence. CONCLUSION Findings suggest that reiki could be a beneficial tool in the self-management of quality of life issues for women who have cancer.