Cancer, Fertility and Me: Developing and Testing a Novel Fertility Preservation Patient Decision Aid to Support Women at Risk of Losing Their Fertility Because of Cancer Treatment.

Background: Women with a new cancer diagnosis face complex decisions about interventions aiming to preserve their fertility. Decision aids are more effective in supporting decision making than traditional information provision. We describe the development and field testing of a novel patient decision aid designed to support women to make fertility preservation treatment decisions around cancer diagnosis. Methods: A prospective, mixed-method, three stage study involving: 1) co-development of the resource in collaboration with a multi-disciplinary group of key stakeholders including oncology and fertility healthcare professionals and patient partners (n=24), 2) alpha testing with a group of cancer patients who had faced a fertility preservation treatment decision in the past (n=11), and oncology and fertility healthcare professionals and stakeholders (n=14) and, 3) beta testing with women in routine care who had received a recent diagnosis of cancer and were facing a fertility preservation treatment decision (n=41) and their oncology and fertility healthcare professionals (n=3). Ten service users recruited from a closed Breast Cancer Now Facebook group and the support group Cancer and Fertility UK also provided feedback on CFM via an online survey. Results: A 60-page paper prototype of the Cancer, Fertility and Me patient decision aid was initially developed. Alpha testing of the resource found that overall, it was acceptable to cancer patients, healthcare professionals and key stakeholders and it was considered a useful resource to support fertility preservation treatment decision-making. However, the healthcare professionals felt that the length of the patient decision aid, and elements of its content may be a barrier to its use. Subsequently, the prototype was reduced to 40 pages. During beta testing of the shortened version in routine care, women who received the resource described its positive impact on their ability to make fertility preservation decisions and support them at a stressful time. However, practical difficulties emerged which impacted upon its wider dissemination in clinical practice and limited some elements of the evaluation planned. Discussion: Women receiving the decision aid within the cancer treatment pathway found it helped them engage with decisions about fertility preservation, and make better informed, values-based care plans with oncology and fertility teams. More work is needed to address access and implementation of this resource as part of routine oncology care pathways.

Implementing a community-based self care training initiative: a process evaluation.

Within the UK, there is growing recognition that individuals will need to take increased responsibility for managing their own health for there to be improvements in population health. The current evidence base on self care interventions reflects an interest in enhancing self care knowledge, skills and behaviour in relation to the management of long-term conditions. In contrast, this paper reports on a community-based self care initiative that was designed to promote self care approaches in the general population. The principal component was a self care skills training course delivered to groups of lay people in community and workplace settings. Self Care for People was piloted in three primary care trusts and a process evaluation was undertaken. The aim of this paper is to examine the feasibility, relevance and acceptability of the initiative. Qualitative interviews were conducted with a sample of stakeholders involved in implementation including coordinators, trainers and key informants from organisations hosting the course. In total 40 interviews and two focus groups were conducted from 2006 to 2008 and the data were analysed thematically. The evaluation found that implementation was relatively straightforward with few major barriers reported. Recruitment to the self care skills training course took place in both workplace and community group settings, including in organisations supporting socially excluded groups. The course was seen to provide a valuable space for contemplation on personal health, however, participation could raise sensitive issues that needed to be dealt with by skilled facilitators. Motivations for involvement differed markedly in host organisations and different strategies for marketing were adopted. The paper concludes by suggesting that while Self Care for People was both feasible and relevant to different stakeholder groups, there needs to be flexibility in responding to the needs of participants in different settings.