Preserving fertility in women with cancer (PreFer): Decision-making and patient-reported outcomes in women offered egg and embryo freezing prior to cancer treatment.

OBJECTIVE: Women of childbearing age with new cancer diagnoses have to make rapid decisions about fertility preservation (FP) before starting cancer treatment (CT). The aim of the PreFer study was to explore this FP decision-making process and its impact on patient-reported outcomes (PROMs) and health-related quality of life (HRQoL). METHODS: A prospective, mixed-methods design was used (questionnaires, in-depth interviews). Interviews were analysed using thematic analysis. Fifty-eight women with new cancer diagnoses were recruited. Comparisons were made between women who declined FP referral in oncology (Group1) and women who chose referral (Group2). Group 2 was further split into those who had some FP (2A) and those who did not (2B). Questionnaires and PROMs were administered prior to and after the fertility consultation, before the start of CT and 3 months post CT. Interviews were conducted with one participant from Group 2. RESULTS: HRQoL was negatively affected, particularly depression. Women's lack of understanding about the relationship between CT and fertility were evident. Five themes emerged from the interviews as barriers and facilitators to the FP decision-making process. CONCLUSION: The results indicate that better information and support resources aimed at women to support their decision making are needed, such as patient decision-aids. Women from Group 1 were found to suffer significantly worse depression compared with the general UK population, highlighting the need for psychological support in the FP care-pathway and for research exploring the contributions of depression and hopelessness to the decision-making process.

Evaluating the impact of a 'virtual clinic' on patient experience, personal and provider costs of care in urinary incontinence: A randomised controlled trial.

OBJECTIVE: To evaluate the impact of using a 'virtual clinic' on patient experience and cost in the care of women with urinary incontinence. MATERIALS AND METHODS: Women, aged > 18 years referred to a urogynaecology unit were randomised to either (1) A Standard Clinic or (2) A Virtual Clinic. Both groups completed a validated, web-based interactive, patient-reported outome measure (ePAQ-Pelvic Floor), in advance of their appointment followed by either a telephone consultation (Virtual Clinic) or face-to-face consultation (Standard Care). The primary outcome was the mean 'short-term outcome scale' score on the Patient Experience Questionnaire (PEQ). Secondary Outcome Measures included the other domains of the PEQ (Communications, Emotions and Barriers), Client Satisfaction Questionnaire (CSQ), Short-Form 12 (SF-12), personal, societal and NHS costs. RESULTS: 195 women were randomised: 98 received the intervention and 97 received standard care. The primary outcome showed a non-significant difference between the two study arms. No significant differences were also observed on the CSQ and SF-12. However, the intervention group showed significantly higher PEQ domain scores for Communications, Emotions and Barriers (including following adjustment for age and parity). Whilst standard care was overall more cost-effective, this was minimal (£38.04). The virtual clinic also significantly reduced consultation time (10.94 minutes, compared with a mean duration of 25.9 minutes respectively) and consultation costs compared to usual care (£31.75 versus £72.17 respectively), thus presenting potential cost-savings in out-patient management. CONCLUSIONS: The virtual clinical had no impact on the short-term dimension of the PEQ and overall was not as cost-effective as standard care, due to greater clinic re-attendances in this group. In the virtual clinic group, consultation times were briefer, communication experience was enhanced and personal costs lower. For medical conditions of a sensitive or intimate nature, a virtual clinic has potential to support patients to communicate with health professionals about their condition.

The impact of surgery for vulval cancer upon health-related quality of life and pelvic floor outcomes during the first year of treatment: a longitudinal, mixed methods study.

OBJECTIVE: To measure the long-term impact of surgical treatment for vulval cancer upon health-related quality of life and pelvic floor outcomes during the first year of therapy. METHODS: Prospective, longitudinal, mixed-methods study. Twenty-three women aged >18 years with a new diagnosis of vulval cancer were recruited. The EORTC QLQ C30, SF-36 and an electronic pelvic floor assessment questionnaire (ePAQ-PF) were administered at baseline (pre-treatment) and 3, 6, 9 and 12 months post-treatment. Mixed effects repeated measures models (all adjusted for age and BMI) were used to investigate changes over time and differences between cancer stage. Qualitative interviews were carried out with 11 of the women and analysed using a thematic approach. RESULTS: Mean age was 59.9 years (SD = 15.3; range = 23.8-86.6 yrs). Mean BMI was 30.0 (SD = 4.5; range = 24.4-38.2). Sixteen women had early (Stage 1 to 2B), and seven women had advanced stage disease (Stage 3 to 4B). Questionnaire scores revealed that physical and social functioning, fatigue, pain and general sex life were significantly worse at 12 months than pre-treatment (p = < 0.05). Qualitative analysis revealed multiple treatment side effects which were perceived as severe and enduring. Women with advanced vulval cancer had significantly worse SF-36 mental health scores at 12 months compared to women with early stage disease (p = 0.037). CONCLUSIONS: Surgery for vulval cancer has long-term implications which can be persistent 12 months post-treatment. High rates of morbidity relating to lymphoedema and sexual function re-enforce the need for specialist clinics to support women who suffer these complications. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

Understanding the impact of the treatment pathway upon the health-related quality of life of women with newly diagnosed endometrial cancer - a qualitative study.

PURPOSE: (1) To determine the impact of treatment and recovery on the health-related quality of life (HRQoL) of endometrial cancer (EC) patients. (2) To explore how treatment types and delivery affect HRQoL and invite suggestions for improvement. METHODS: Qualitative study. In-depth, semi-structured interviews at 3, 6, 9 or 12 months post-treatment were carried out with 22 women with stage IA to IVB EC who had undergone treatment at a tertiary referral centre for gynaecological cancers in Sheffield, UK. 21 were treated surgically and 4 received adjuvant treatment. Data were analysed using an inductive thematic approach. RESULTS: Four dominant themes emerged regarding the treatment pathway: pre-treatment concerns, experience during treatment, post-treatment and survivorship issues. Expectations and understandings of EC and its treatment were often inaccurate. Proper explanations eased anxiety but were uncommon. Laparoscopic surgery was welcomed where offered but did not necessarily influence coping ability. Instead, women evaluated treatment impacts against their expectations. Treatments affected women's physical abilities, self-perception and relationships resulting in re-evaluation of lifestyle. CONCLUSIONS: The impact of treatment upon HRQoL for women with EC differs from other gynaecological cancers. Better information provision would enhance coping ability. Coping methods and expectations appear to influence HRQoL more than treatment modality.

Understanding women's experiences of electronic interviewing during the clinical episode in urogynaecology: a qualitative study.

INTRODUCTION AND HYPOTHESIS: Questionnaires for assessing health and related quality of life are increasingly advocated but little is known about women's views on them. The aim of the study was to understand women's experiences of using an electronic personal assessment questionnaire for pelvic floor disorders (ePAQ-PF) during the clinical episode. METHODS: A qualitative study was performed in a tertiary referral centre for urogynaecology. Women who completed the electronic questionnaire (ePAQ-PF) before and after intervention for pelvic floor disorders were recruited. Semi-structured interviews were conducted in 20 women and the transcripts were analysed using a thematic approach to identify themes and categories. The main outcome measures were: (1) women's feelings about their experience of using the questionnaire and the impact it had on their clinical episode, (2) exploration of ways in which the questionnaire influenced communication, (3) influence of the questionnaire on anxiety and expectations relating to clinical care and (4) women's feelings about how the use of the questionnaire has affected their health and well-being. RESULTS: Qualitative analysis identified eight themes relating to the burden and the benefit of questionnaire use with 'benefit' being the dominant theme. Women felt that the questionnaire improved their understanding of their condition, improved communication with clinicians and helped prepare them for clinical consultations, generally finding it relevant, easy and enjoyable to complete. Some women commented on the burden of questionnaire use and expressed concerns about its length and that it's closed multiple choice format was restrictive. CONCLUSIONS: The identified principal themes of enhanced communication and preparedness for clinical consultation provided by the questionnaire appeared to support improved focus and insight, which in turn contributed to the setting of realistic expectations.

'A drop of water in the pool': information and engagement of linguistic communities around a municipal pesticide bylaw to protect the public's health.

The Multicultural Yard Health and Environment Project (MYHEP) used Toronto's Pesticide Bylaw roll-out process to examine how culturally specific perceptions and practices might influence the relevance of municipal public health information and community engagement strategies and the effectiveness of health protection initiatives. In Canada, and particularly in Toronto, such information is needed for governments to effectively engage with increasingly diverse populations. Focus groups and individual interviews were conducted with Spanish- and Cantonese-speaking participants to document opinions about pesticide use and regulation and views on municipal information and engagement strategies. MYHEP participants reported a need for more accessible environmental health messaging. There was confusion over the safety and legality of pesticide products available for sale in Toronto stores. Most participants indicated they were unwilling to make formal complaints about neighbours who were not complying with the bylaw (an important mechanism for enforcement). Results indicate that environmental health communication and engagement strategies need to be more carefully tailored to address local sociocultural and linguistic contexts in order to provide more equitable environmental health protection and promotion for all residents. These findings led Toronto Public Health to adapt its efforts so as to better engage communities regarding environmental health.