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Gynaecological Oncology Patient-reported Outcome Measures for Women with Vulvar Neoplasia – Current Situation and Future Directions Beate Senn, 1 Manuela Eicher, 2 Michael D Mueller, 3 Sandra Engberg 4 and Rebecca Spirig 5 1. Professor and Head of Institute for Applied Nursing Sciences IPW, University of Applied Sciences FHS St Gallen, Switzerland; 2. Dean of Research, Development and Services, University of Applied Science Western Switzerland, School of Health Fribourg and Visiting Professor, Institute of Nursing Science, Faculty of Medicine, University of Lausanne, Switzerland; 3. Professor in Ordinary, Head Physician in Gynecology and Gynecological Oncology and Co-Director, Department of Obstetrics and Gynecology, Inselspital, University Hospital Bern, Switzerland; 4. Professor, Institute of Nursing Science, Faculty of Medicine, University of Basel and Associate Professor/Associate Dean, School of Nursing, University of Pittsburgh, Pennsylvania, US; 5. Professor, Institute of Nursing Science, Faculty of Medicine, University of Basel and Head, Centre of Clinical Nursing Science, University Hospital Zurich, Switzerland Abstract This article discusses concerns about women with vulvar neoplasia (vulvar intraepithelial neoplasia and vulvar cancer) and the available surgical treatment options. Given the gaps in the evidence base in terms of women with vulvar neoplasia and surgical treatment the women with vulvar Neoplasia-Patient Reported Outcome (WOMAN-PRO) research project focused on complications, symptoms and associated distress of women with surgically treated vulvar neoplasia. The main results of the research project are summarised, showing complications identified by clinicians, experiences reported by patients, the newly developed WOMAN-PRO instrument and symptom occurrence of each of 31 symptoms and the degree to which symptoms distressed women during the first seven days after discharge following surgical treatment for their vulvar neoplasia. Furthermore, based on the major findings of the project, suggestions for further research and clinical practice and conclusions are presented. We conclude that including patient self-report as a major element in follow-up care has the potential to enhance the quality of supportive care. Keywords Vulvar cancer, vulvar intraepithelial neoplasia, self-report, symptoms, symptom distress, prevalence, patient-reported outcome Disclosure: The authors have no conflicts of interest to declare. This study was supported by a grant from the Foundation Cancer Research Switzerland (Project no. 02456-08-2009). Publication content is solely the responsibility of the authors and does not necessarily reflect the official views of the Foundation Cancer Research Switzerland. Acknowledgements: We would like to acknowledge the time and engagement contributed by all women who participated in our studies. Furthermore, we thank the medical and nurse directors and the recruiting nurses and physicians from the involved clinics in Germany and Switzerland. We especially thank Leslie H Nicoll for reviewing this paper. Received: 10 February 2013 Accepted: 28 April 2013 Citation: European Oncology & Haematology 2013;9(2):110–3 Correspondence: Beate Senn, Professor and Head of Institute for Applied Nursing Sciences IPW, University of Applied Sciences FHS St Gallen, Rosenbergstrasse 59, 9001 St Gallen, Switzerland. E:beate.senn@fhsg.ch In vulvar neoplasia, substantial improvements in therapy and care have been achieved during the last decade. 1 Nevertheless, even minor surgical interventions cause multiple symptoms and side effects that affect a woman’s quality of life. 2 The term ‘vulvar neoplasia’ includes vulvar intraepithelial neoplasia (VIN) and vulvar cancer. 3,4 Vulvar neoplasia is a rare condition, but with an increasing incidence in the last three decades in Europe and the US. 5,6 The incidence of vulvar neoplasia in Germany and Switzerland is about two to seven per 100,000 women per year. 7,8 Surgical treatment is the standard therapy. 9,10 The prevalence of surgery-related complications, such as wound infections, is estimated to be between 5 % and 45 %. 2,11 Complications are considered an adverse event of which a substantial number are preventable. 12,13 Surgery-related complications in women with vulvar neoplasia result in a variety of physical and psychosocial problems, and contribute to high healthcare costs. 2,14–16 Modified surgical procedures, such as the replacement of radical vulvectomy by less wide local excision, often means shorter hospital stays. 17 Furthermore, oncology care in general is shifting to the outpatient setting. 17 Thus, after discharge, women with vulvar neoplasia who have undergone surgical treatment are confronted with the need to assess, evaluate and manage surgery-related symptoms without the personal support of the in-patient care team. 110 Symptoms are defined as a patient’s perceived changes in biopsychosocial functioning, sensation or cognition, 18,19 such as bleeding, shame and fear. A patient’s symptom experience includes two common dimensions: the cognitive dimension, which comprises symptom occurrence, frequency and severity; and the emotional dimension, which includes symptom distress. 20 Humphreys et al. 19 developed a theory of symptom management to try to understand how patients experience and manage symptoms and to provide healthcare professionals with guidance for selecting and evaluating clinical interventions, as well as to inform research. The model provides a framework for understanding the relationship between aspects of symptom experience, symptom-management strategies and patient outcomes. In a patient-centred healthcare approach, the theory provides appropriate guidance for treatment and care of patients with vulvar neoplasia. It is crucial to understand symptom experience in order to specify symptom assessment strategies and identify the focus for symptom management and attainable outcomes. 18 Symptom assessment should be part of the general screening for adverse symptom events. This can be undertaken by collecting patient- reported outcome (PRO) data. 21 A PRO is any report of the patient’s health status that comes directly from the patient, such as his/her © Touch ME d ical ME dia 2013