Patient experience of long-term recovery after open fracture of the lower limb: a qualitative study using interviews in a community setting.

OBJECTIVES: Treatment of open fractures is complex and patients may require muscle and skin grafts. The aim of this study was to gain a greater understanding of patient experience of recovery from open fracture of the lower limb 2-4 years postinjury. DESIGN: A phenomenological approach was used to guide the design of the study. Interviews took place between October 2016 and April 2017 in the participants' own homes or via telephone. SETTING: England, UK. PARTICIPANTS: A purposive sample of 25 patients were interviewed with an age range of 26-80 years (median 51), 19 were male and six female, and time since injury was 24-49 months (median 35 months). RESULTS: The findings identified a focus on struggling to recover as participants created a new way of living, balancing moving forward with accepting how they are, while being uncertain of the future and experiencing cycles of progress and setbacks. This was expressed through three themes: (i) 'being disempowered' with the emotional impact of dependency and uncertainty, (ii) 'being changed' and living with being fragile and being unable to move freely and (iii) 'being myself' with a loss of self, feeling and looking different, alongside recreation of self in which they integrated the past, present and future to find meaningful ways of being themselves. CONCLUSION: This study identified the long-term disruption caused by serious injury, the hidden work of integration that is required in order to move forward and maximise potential for recovery. Supportive strategies that help people to self-manage their everyday emotional and physical experience of recovery from injury are required. Research should focus on developing and testing effective interventions that provide support and self-management within a holistic rehabilitation plan. TRIAL REGISTRATION NUMBER: Current Controlled Trials ISRCTN33756652; Post-results.

Oral anticoagulation is preferable to injected, but only if it is safe and effective: An interview study of patient and carer experience of oral and injected anticoagulant therapy for cancer-associated thrombosis in the select-d trial.

BACKGROUND: Cancer patients have a four- to fivefold greater risk of thrombosis than the general population. Recommended treatment for cancer-associated thrombosis is 3-6 months of low-molecular-weight heparin. The 'select-d' trial is an open-label, randomised, multi-centre pilot trial in patients with cancer-associated thrombosis, utilising dalteparin (low-molecular-weight heparin) versus rivaroxaban (a direct oral anticoagulant), to assess effectiveness and safety. AIM: To explore patient and informal carers' experiences of cancer-associated thrombosis and their experience and understanding of the risk-benefit of thrombosis treatment. DESIGN: Qualitative substudy of the select-d trial, using semi-structured interviews. Interviews were audio-recorded and transcribed. Data were analysed using Framework Analysis. PARTICIPANTS: Participants were purposively sampled ( n = 37 patients; 46% male; age 40-89; 9 with carer present). RESULTS: Three themes were found: experience of cancer-associated thrombosis, experience of anticoagulation and risk-benefit balance of the two modes of administration. Some were shocked by their thrombosis diagnosis (most were unaware of their risk), but others found it insignificant compared with cancer. Most patients found tablets more convenient, but injections were acceptable in the context of having cancer. While most were happy to follow medical advice, others weighed preference on the basis of effectiveness. CONCLUSION: Lack of awareness of thrombosis risk is concerning; cancer patients must be informed to enable prompt help-seeking. Tablets could provide a welcome choice for patients if there is equivalent risk-benefit to injected anticoagulants. Patients trust their clinicians to tailor their treatment. Future research could explore the effect of routine information giving about the risk of thrombosis.