BackgroundIdiopathic pulmonary fibrosis (IPF) is a chronic, fibrotic interstitial lung disease of unknown origin. It has a median survival of three years but a wide range in survival rate which is difficult to predict at the time of diagnosis. Specialist guidance promotes a patient centred approach emphasising regular assessment, information giving and supportive care coordinated by a multidisciplinary team (MDT). However understanding of patient and carer experience across the disease trajectory is limited and detailed guidance for MDTs on communication, assessment, and triggers for supportive and palliative interventions is lacking. This study addresses uncertainties relating to care needs of patients and carers at different stages of the IPF disease trajectory.MethodsFollowing ethical approval a multi-centre mixed-methods study recruited participants with IPF at four stages of the disease trajectory. Qualitative analysis was used to analyse 48 semi-structured interviews with patients (27) and paired carers (21).ResultsPatients and carers outlined key elements of MDT activity capable of having significant impact on the care experience. These were structured around:Focus of clinical encountersTimely identification of changes in health status and functional activityUnderstanding of symptoms and medical interventionsCoping strategies and carer roles.ConclusionsPatients diagnosed with IPF have a clear understanding of their prognosis but little understanding of how their disease will progress and how it will be managed. In depth analysis of the experiences of patients and carers offers guidance for refining IPF clinical pathways. This will support patients and carers at key transition points in line with National Institute for Health and Care Excellence (NICE) guidance.Electronic supplementary materialThe online version of this article (doi:10.1186/s12890-015-0145-5) contains supplementary material, which is available to authorized users.
BackgroundA reduced exercise capacity is associated with increased morbidity and mortality in patients with advanced non-small cell lung cancer (NSCLC). Therapeutic exercise can be beneficial and neuromuscular electrical stimulation (NMES) of the quadriceps muscles may represent a practical approach. The primary aim of this study was to determine the acceptability of NMES of the quadriceps to patients with NSCLC used alongside palliative chemotherapy. Secondary aims explored aspects of safety and efficacy of NMES in this setting.MethodsPatients with advanced NSCLC due to receive first-line palliative chemotherapy were randomized to usual care with or without NMES. They were asked to undertake 30 minute sessions of NMES, ideally daily, but as a minimum, three times weekly. For NMES to be considered acceptable, it was predetermined that ≥80% of patients should achieve this minimum level of adherence. Qualitative interviews were held with a subset of patients to explore factors influencing adherence. Safety was assessed according to the Common Terminology Criteria for Adverse Events. Quadriceps muscle strength, thigh lean mass, and physical activity level were assessed at baseline and after three cycles of chemotherapy.Results49 patients (28 male, median (IQR) age 69 (64−75) years) participated. Of 30 randomized to NMES, 18 were eligible for the primary endpoint, of whom 9 (50% [90% CI, 29 to 71]) met the minimum level of adherence. Adherence was enhanced by incorporating sessions into a daily routine and hindered by undesirable effects of chemotherapy. There were no serious adverse events related to NMES, nor significant differences in quadriceps muscle strength, thigh lean mass or physical activity level between groups.ConclusionsNMES is not acceptable in this setting, nor was there a suggestion of benefit. The need remains to explore NMES in patients with cancer in other settings.Trial RegistrationCurrent Controlled Trials ISRCTN 42944026 www.controlled-trials.com/ISRCTN42944026
Rates of hospital presentation for self-harm have increased in recent years, and although clinical practice guidelines on clinical provision prioritize positive patient experiences, the quality of provision remains variable. This systematic review provides an updated and extended synthesis of qualitative research on the following: (a) patients’ experiences of treatment following presentation to hospital; and (b) patients’ perceptions of the impact of treatment on recurrent self-harm and/or suicidal ideation, and future help-seeking. Twenty-six studies were identified for inclusion in the final synthesis. Three meta-themes emerged: (a) individuals undertake extensive identity work when presenting with self-harm, navigating the process of becoming a patient, and negotiating the type of patient they want to be; (b) care ranges from gentle to hostile, with care at admission and discharge being particularly disorientating; and (c) negative experiences of clinical treatment may increase future self-harm. Emerging research gaps include the need for further theoretically informed qualitative research in this area.
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