Background‘Treatment burden’, defined as both the workload and impact of treatment regimens on function and well-being, has been associated with poor adherence and unfavourable outcomes. Previous research focused on treatment workload but our understanding of treatment impact is limited. This research aimed to systematically review qualitative research to identify: 1) what are the treatment generated disruptions experienced by patients across all chronic conditions and treatments? 2) what strategies do patients employ to minimise these treatment generated disruptions?Methods and FindingsThe search strategy centred on: treatment burden and qualitative methods. Medline, CINAHL, Embase, and PsychINFO were searched electronically from inception to Dec 2013. No language limitations were set. Teams of two reviewers independently conducted paper screening, data extraction, and data analysis. Data were analysed using framework synthesis informed by Cumulative Complexity Model. Eleven papers reporting data from 294 patients, across a range of conditions, age groups and nationalities were included. Treatment burdens were experienced as a series of disruptions: biographical disruptions involved loss of freedom and independence, restriction of meaningful activities, negative emotions and stigma; relational disruptions included strained family and social relationships and feeling isolated; and, biological disruptions involved physical side-effects. Patients employed “adaptive treatment work” and “rationalised non-adherence” to minimise treatment disruptions. Rationalised non-adherence was sanctioned by health professionals at end of life; at other times it was a “secret-act” which generated feelings of guilt and impacted on family and clinical relationships.ConclusionsTreatments generate negative emotions and physical side effects, strain relationships and affect identity. Patients minimise these disruptions through additional adaptive work and/or by non-adherence. This affects physical outcomes and care relationships. There is a need for clinicians to engage with patients in honest conversations about treatment disruptions and the ‘adhere-ability’ of recommended regimens. Patient-centred practice requires management plans which optimise outcomes and minimise disruptions.

the need for the development and implementation of a Core Outcome Set has been reinforced. Ahead of the completion of the Core Outcome Set, researchers and clinicians are advised to measure the impact of physical activity interventions on these frequently reported outcome domains.

Background and Objectives A core outcome set (COS) to evaluate physical activity (PA) interventions for people living with dementia is needed, as the development of guidelines is currently limited by important heterogeneity in this field of research. Development of COS often includes Delphi surveys, but people living with dementia are often excluded. This study aimed to reach consensus on this COS using a modified Delphi survey to enable the participation of people living with dementia. Research Design and Methods Two stakeholders groups took part in a Delphi survey (Group 1: people living with dementia and family caregivers; Group 2: professionals from different backgrounds, including physiotherapists, occupational therapists, and researchers). Caregivers and professionals completed the survey remotely. Participants living with dementia took part face-to-face, using a card sorting strategy. The consensus process was finalized with a consensus meeting. Results Ninety-five participants of both groups completed the modified Delphi. Of those, 11 attended the consensus meeting. The card sorting strategy was successful at including people living with dementia. Seven outcomes reached consensus: preventing falls; doing what you can do; staying healthy and fit; walking better, being able to stand up and climb stairs; feeling brighter; enjoying the moment; and, feeling useful and having a purpose. Discussion and Implications Robust and innovative methodological strategies were used to reach a consensus on a COS (what to measure) to evaluate PA for people living with dementia. Future work will focus on the selection of the most appropriate tools to measure these outcomes (how to measure).

Background The COVID‐19 pandemic has been associated with an unprecedented number of critical care survivors. Their experiences through illness and recovery are likely to be complex, but little is known about how best to support them. This study aimed to explore experiences of illness and recovery from the perspective of survivors, their relatives and professionals involved in their care. Study design In‐depth qualitative interviews were conducted with three stakeholder groups during the first wave of the pandemic. A total of 23 participants (12 professionals, 6 survivors and 5 relatives) were recruited from 5 acute hospitals in England and interviewed by telephone or video call. Data analysis followed the principles of Reflexive Thematic Analysis. Findings Three themes were generated from their interview data: (1) Deteriorating fast—a downhill journey from symptom onset to critical care; (2) Facing a new virus in a hospital—a remote place; and (3) Returning home as a survivor, maintaining normality and recovering slowly. Conclusions Our findings highlight challenges in accessing care and communication between patients, hospital staff and relatives. Following hospital discharge, patients adopted a reframed ‘survivor identity’ to cope with their experience of illness and slow recovery process. The concept of survivorship in this patient group may be beneficial to promote and explore further. Relevance to clinical practice All efforts should be made to continue to improve communication between patients, relatives and health professionals during critical care admissions, particularly while hospital visits are restricted. Adapting to life after critical illness may be more challenging while health services are restricted by the impacts of the pandemic. It may be beneficial to promote the concept of survivorship, following admission to critical care due to severe COVID‐19.

Background As a sequela of the COVID-19 pandemic, a large cohort of critical illness survivors have had to recover in the context of ongoing societal restrictions. Objective We aimed to use smartwatches (Fitbit Charge 3; Fitbit LLC) to assess changes in the step counts and heart rates of critical care survivors following hospital admission with COVID-19, use these devices within a remote multidisciplinary team (MDT) setting to support patient recovery, and report on our experiences with this. Methods We conducted a prospective, multicenter observational trial in 8 UK critical care units. A total of 50 participants with moderate or severe lung injury resulting from confirmed COVID-19 were recruited at discharge from critical care and given a smartwatch (Fitbit Charge 3) between April and June 2020. The data collected included step counts and daily resting heart rates. A subgroup of the overall cohort at one site—the MDT site (n=19)—had their smartwatch data used to inform a regular MDT meeting. A patient feedback questionnaire and direct feedback from the MDT were used to report our experience. Participants who did not upload smartwatch data were excluded from analysis. Results Of the 50 participants recruited, 35 (70%) used and uploaded data from their smartwatch during the 1-year period. At the MDT site, 74% (14/19) of smartwatch users uploaded smartwatch data, whereas 68% (21/31) of smartwatch users at the control sites uploaded smartwatch data. For the overall cohort, we recorded an increase in mean step count from 4359 (SD 3488) steps per day in the first month following discharge to 7914 (SD 4146) steps per day at 1 year (P=.003). The mean resting heart rate decreased from 79 (SD 7) beats per minute in the first month to 69 (SD 4) beats per minute at 1 year following discharge (P<.001). The MDT subgroup’s mean step count increased more than that of the control group (176% increase vs 42% increase, respectively; +5474 steps vs +2181 steps, respectively; P=.04) over 1 year. Further, 71% (10/14) of smartwatch users at the MDT site and 48% (10/21) of those at the control sites strongly agreed that their Fitbit motivated them to recover, and 86% (12/14) and 48% (10/21), respectively, strongly agreed that they aimed to increase their activity levels over time. Conclusions This is the first study to use smartwatch data to report on the 1-year recovery of patients who survived a COVID-19 critical illness. This is also the first study to report on smartwatch use within a post–critical care MDT. Future work could explore the role of smartwatches as part of a randomized controlled trial to assess clinical and economic effectiveness. International Registered Report Identifier (IRRID) RR2-10.12968/ijtr.2020.0102

Background Adherence to physical activity is challenging for people living with dementia, and largely dependent on carers’ involvement. Carers are likely to support physical activity based on their perceived balance between benefits and potential side effects of such intervention for both patients and themselves. Professionals also have a role in terms of optimising such interventions not only for people with dementia but also their carers. Aims The present study aimed to identify the priorities of carers and professionals regarding (1) outcomes of physical activity for people living with dementia on carers and (2) side effects on patients and carers. Methods This was a two-round prioritisation exercise. In round one, participants were asked to rank, from most to least important, 2 lists of outcomes generated in a previous systematic review and qualitative study: (i) 10 outcomes on carers; (ii) 17 side effects on patients and carers. In round two, participants were asked to consider their own ranking in round one against the overall group ranking and re-rank both lists. Results 36 carers and 39 professionals completed both rounds. The carer outcomes ranked as highest priority were “carer feeling positive and satisfied”, “carer improving wellbeing” and “making lives of carers easier”. The most undesirable side effects were “becoming agitated and confused”, “falling over” and “feeling discomfort and pain”. Discussion and conclusions Carers and professionals value the potential reduction in carer burden that may occur as a consequence of the person with dementia engaging in physical activity. Behavioural and psychological symptoms, falls and pain are the most undesirable side effects of physical activity. Future research should aim to address, and consistently report on these outcomes.

Background/Aims The COVID-19 pandemic has created the need for research on how to effectively rehabilitate patients who have been discharged from an intensive care unit. This study is a protocol for a mixed methods feasibility study addressing the research questions: 1) what are the needs of patients who have survived COVID-19? 2) is the use of technology feasible to support their recovery? Methods A multicentre, technology supported, rehabilitation intervention for survivors of critical illness caused by COVID-19 will be assessed. Survivors in the study population will be offered a smartwatch to monitor their activity levels and will have biopsychosocial outcome measures monitored at three time points: discharge from hospital, 2–3 months post discharge and 1 year post discharge. Semi-structured interviews will be conducted across eight hospital sites with survivors, their relatives and professionals to understand their recovery experiences. Conclusions Designed by frontline clinicians, this protocol outlines a feasibility study that will provide new knowledge on the process of recovery of critical illness caused by COVID-19.

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