Fatigue After CriTical illness (FACT): Co-production of a self-management intervention to support people with fatigue after critical illness

Purpose: Fatigue is a common and debilitating problem in patients recovering from critical illness. To address a lack of evidence-based interventions for people with fatigue after critical illness, we co-produced a self-management intervention based on self-regulation theory. This article reports the development and initial user testing of the co-produced intervention. Methods: We conducted three workshops with people experiencing fatigue after critical illness, family members, and healthcare professionals to develop a first draft of the FACT intervention, designed in web and electronic document formats. User testing and interviews were conducted with four people with fatigue after critical illness. Modifications were made based on the findings. Results: Participants found FACT acceptable and easy to use, and the content provided useful strategies to manage fatigue. The final draft intervention includes four key topics: (1) about fatigue which discusses the common characteristics of fatigue after critical illness; (2) managing your energy with the 5 Ps (priorities, pacing, planning, permission, position); (3) strategies for everyday life (covering physical activity; home life; leisure and relationships; work, study, and finances; thoughts and feelings; sleep and eating); and (4) goal setting and making plans. All material is presented as written text, videos, and supplementary infographics. FACT includes calls with a facilitator but can also be used independently. Conclusions: FACT is a theory driven intervention co-produced by patient, carer and clinical stakeholders and is based on contemporary available evidence. Its development illustrates the benefits of stakeholder involvement to ensure interventions are informed by user needs. Further testing is needed to establish the feasibility and acceptability of FACT. Implications for clinical practice: The FACT intervention shows promise as a self-management tool for people with fatigue after critical illness. It has the potential to provide education and strategies to patients at the point of discharge and follow-up

'These Discussions Aren't Happening': Experiences of People Living with Inflammatory Bowel Disease and Talking About Sexual Well-being with Health Care Professionals.

Background Inflammatory bowel disease [IBD] affects all aspects of life, yet little is known about the impact of the condition on intimacy and sexuality and if such concerns should be discussed with health care professionals. This hermeneutical phenomenological study aimed to explore the experiences of people living with inflammatory bowel disease and discussing their sexuality concerns with health care professionals. Methods Participants [n = 43] aged 17–64 years were recruited. Data were collected via in depth interviews and anonymous narrative accounts [Google Forms]. Thematic analysis was used to analyse the data. Results An overarching theme ‘These discussions aren’t happening’ with four main themes were generated. The main themes were: ‘I can’t image talking about sex’; ‘I am a person, not my IBD’; ‘We need to talk about sex’; and ‘Those who talked about sex, talked badly’. Participants described the lack of conversations with their health care professionals on sexual well-being issues, in spite of the importance they gave to the topic, and identified barriers to having such conversations. They made suggestions for future clinical practice that would better meet their needs. The few who had discussed sexual well-being issues with health care professionals reported negative experiences. Conclusions Patients’ needs and preferences, about addressing during clinical appointments concerns related to their sexual well-being, should be addressed routinely and competently by health care professionals. Understanding the implications of inflammatory bowel disease for intimate aspects of the lives of those living with the condition could improve the quality of the care provided

Prevalence and experience of fatigue in survivors of critical illness: a mixed-methods systematic review

We conducted a mixed methods systematic review to investigate the prevalence, experience and management of fatigue in survivors of critical illness. We identified 76 studies investigating fatigue or vitality in adults discharged from an intensive care unit and split the data we extracted into three datasets: vitality scores from the Short Form Health Survey-36 (n = 54); other quantitative data (n = 19); and qualitative data (n = 9). We assessed methodological quality using critical appraisal skills programme tools. We adopted a segregated approach to mixed-methods synthesis. In a final step, we attributed combined results to one of four qualitative themes: prevalence and severity; contributing factors; impacts on quality of life; and assessment and management. Prevalence of fatigue ranged from 13.8 to 80.9%. Short Form Health Survey-36 vitality scores were commonly used as a marker of fatigue. Vitality scores reached a nadir approximately 1 month following ICU discharge (mean (SD) 56.44 (32.30); 95%CI 52.92–59.97). They improved over time, but seldom reached reference population scores. Associated biological, disease-related and psychological factors included age, poor pre-morbid status, sleep and psychological disturbance. Qualitative data highlight the profound negative impact of fatigue on survivors’ quality of life. Survivors seldom had any information provided on the potential impact of fatigue. No fatigue assessment tools specific to critical illness or evidence-based interventions were reported. Fatigue is highly prevalent in survivors of critical illness, and negatively impacts recovery. Further research on developing fatigue assessment tools specifically for critically ill patients and evaluating the impact of pharmacological and non-pharmacology interventions is needed

Supported online self-management versus care as usual for symptoms of fatigue, pain and urgency/incontinence in adults with inflammatory bowel disease (IBD-BOOST): study protocol for a randomised controlled trial.

BACKGROUND: Despite being in clinical remission, many people with inflammatory bowel disease (IBD) live with fatigue, chronic abdominal pain and bowel urgency or incontinence that limit their quality of life. We aim to test the effectiveness of an online self-management programme (BOOST), developed using cognitive behavioural principles and a theoretically informed logic model, and delivered with facilitator support. PRIMARY RESEARCH QUESTION: In people with IBD who report symptoms of fatigue, pain or urgency and express a desire for intervention, does a facilitator-supported tailored (to patient needs) online self-management programme for fatigue, pain and faecal urgency/incontinence improve IBD-related quality of life (measured using the UK-IBDQ) and global rating of symptom relief (0-10 scale) compared with care as usual? METHODS: A pragmatic two-arm, parallel group randomised controlled trial (RCT), of a 12-session facilitator-supported online cognitive behavioural self-management programme versus care as usual to manage symptoms of fatigue, pain and faecal urgency/incontinence in IBD. Patients will be recruited through a previous large-scale survey of unselected people with inflammatory bowel disease. The UK Inflammatory Bowel Disease Questionnaire and global rating of symptom relief at 6 months are the co-primary outcomes, with multiple secondary outcomes measured also at 6 and 12 months post randomisation to assess maintenance. The RCT has an embedded pilot study, health economics evaluation and process evaluation. We will randomise 680 patients, 340 in each group. Demographic characteristics and outcome measures will be presented for both study groups at baseline. The UK-IBDQ and global rating of symptom relief at 6 and 12 months post randomisation will be compared between the study groups. DISCUSSION: The BOOST online self-management programme for people with IBD-related symptoms of fatigue, pain and urgency has been designed to be easily scalable and implemented. If it is shown to improve patients' quality of life, this trial will enable clinicians and patients to make informed management decisions. This is the first trial, to our knowledge, focused on multiple symptoms prioritised by both people with IBD and health professionals. TRIAL REGISTRATION: ISRCTN71618461 . Registered on 9 September 2019

ECCO Guidelines on Therapeutics in Ulcerative Colitis: Surgical Treatment

This is the second of a series of two articles reporting the European Crohn's and Colitis Organisation [ECCO] evidence-based consensus on the management of adult patients with ulcerative colitis [UC]. The first article is focused on medical management, and the present article addresses medical treatment of acute severe ulcerative colitis [ASUC] and surgical management of medically refractory UC patients, including preoperative optimisation, surgical strategies, and technical issues. The article provides advice for a variety of common clinical and surgical conditions. Together, the articles represent an update of the evidence-based recommendations of the ECCO for UC

ECCO Guidelines on Therapeutics in Ulcerative Colitis: Medical Treatment

hese recommendations summarise the current evidence on the medical management of adult patients with UC. Gaps were iden-tified during the analysis of the data, which should be addressed by further research. Where evidence is lacking or is very weak and evidence-based recommendations cannot be given, ECCO provides alternative tools, such as Topical Reviews28,95,153–158 or Position Papers.159–161 It is important that clinicians use these guidelines within the framework of local regulations, and seek to understand and address the individual needs and expectations of every patient. We recognise that constraints on health care resources are an im-portant factor in determining whether recommendations can be implemented for patients in many countries. The recommendations outlined here should be used to inform treatment decisions and form part of an overall multidisciplinary treatment plan for patients with UC, which may also encompass psychological, nutritional, and other non-pharmacological interventions

High-intensity interval training and moderate-intensity continuous training in adults with Crohn’s disease: a pilot randomised controlled trial

Background: This study assessed the feasibility and acceptability of two common types of exercise training—high-intensity interval training (HIIT) and moderate-intensity continuous training (MICT)—in adults with Crohn’s disease (CD). Methods: In this mixed-methods pilot trial, participants with quiescent or mildly-active CD were randomly assigned 1:1:1 to HIIT, MICT or usual care control, and followed up for 6 months. The HIIT and MICT groups were offered three exercise sessions per week for the first 12 weeks. Feasibility outcomes included rates of recruitment, retention, outcome completion, and exercise attendance. Data were collected on cardiorespiratory fitness (e.g., peak oxygen uptake), disease activity, fatigue, quality of life, adverse events, and intervention acceptability (via interviews). Results: Over 17 months, 53 patients were assessed for eligibility and 36 (68%) were randomised (47% male; mean age 36.9 [SD 11.2] years); 13 to HIIT, 12 to MICT, and 11 to control. The exercise session attendance rate was 62% for HIIT (288/465) and 75% for MICT (320/429), with 62% of HIIT participants (8/13) and 67% of MICT participants (8/12) completing at least 24 of 36 sessions. One participant was lost to follow-up. Outcome completion rates ranged from 89 to 97%. The mean increase in peak oxygen uptake, relative to control, was greater following HIIT than MICT (2.4 vs. 0.7 mL/kg/min). There were three non-serious exercise-related adverse events, and two exercise participants experienced disease relapse during follow-up. Conclusions: The findings support the feasibility and acceptability of the exercise programmes and trial procedures. A definitive trial is warranted. Physical exercise remains a potentially useful adjunct therapy in CD