Identifying functional impairment and rehabilitation needs in patients newly diagnosed with inoperable lung cancer: a structured literature review.

PurposePatients newly diagnosed with inoperable lung cancer experience a symptom distress burden that may impact upon functional performance in daily activities. This structured review examines empirical evidence to see how functional limitation and rehabilitation needs are represented in the supportive care literature in this population. Early access to rehabilitation services may ameliorate the impact, but evidence of need following diagnosis is required.MethodElectronic databases Medline, Web-of-Science, Cinahl, AMED and PsychINFO were searched in April 2014. Hawker's criteria were used to assess methodological quality. The World Health Organization International Classification for Functioning Disability and Health (WHO-ICF) guided framework analysis and narrative synthesis.ResultsThirty-two articles selected for further analysis included heterogeneous studies exploring the following conceptually diverse dimensions: quality of life, symptoms, functional performance and unmet supportive care needs at diagnosis and first treatment phase. Studies, mostly utilising patient self-report measures, reveal functional impairments, limitations and restrictions influenced by personal and environmental factors across all WHO-ICF domains. Two studies included objective evaluations of function. Six studies explored functional performance as a primary aim. Five studies suggested specific or general rehabilitation interventions to address identified needs.ConclusionsNeeds associated with a diagnosis of inoperable lung cancer impact on daily life in the peri and early post-diagnostic period across all WHO-ICF domains. Specific functional impairments, limitations and restrictions and the potential role of rehabilitation services are rarely explored objectively or discussed in the supportive care literature for this population. Research is needed to guide the development of effective rehabilitation interventions acceptable to patients, health care commissioners and providers that address the impact of a new lung cancer diagnosis on functional performance

Using volunteers to improve access to community rehabilitation in palliative care: the St Christopher's Living Well at Home Team

BackgroundUK hospices often provide outpatient rehabilitation services for people with advanced progressive illness. However, some people are unable to travel, leading to inequity in rehabilitation access.ObjectivesThe Living Well at Home Team (LWAHT) at St Christopher's Hospice aimed to evaluate whether using volunteers to support rehabilitation in peoples’ homes improved the reach of rehabilitation for people living in underserved localities and if it supported people to optimise their functional independence.MethodsThis service improvement project evaluated hospice rehabilitation uptake during the implementation of volunteer-supported community rehabilitation. Following assessment by an LWAHT therapist, eligible people were matched with a trained volunteer who supported four to eight rehabilitation sessions in the person's home. The evaluation assessed uptake of the rehabilitation sessions. Mobility, wellbeing, and goal attainment outcomes were assessed by the Life-Space Assessment (LSA), General Health Questionnaire (GHQ), and Goal Attainment Scale (GAS), respectively.ResultsIn the first year, 183 patients were referred to the LWAHT; 123 were assessed and 96 received rehabilitation including 56 who were matched with a volunteer. Following volunteer support, patients reported significant improvements in mobility [LSA median 20 (IQR, 3.5–27.8)], general health [GHQ −2 (−5.25 to 0)], and achievement of goals [GAS T-score +8 (0–18.4)].ConclusionsIt was feasible to support community rehabilitation using hospice volunteers for people with advanced progressive illness. The LWAHT service also increased the uptake of hospice centre-based rehabilitation. Further work should test efficacy and identify patients requiring additional professional input.Key messageThis is the first known study reporting on the use of trained rehabilitation volunteers to extend the reach of hospice rehabilitation services. People with limited access to the hospice, because of geographical location or personal circumstances, valued and benefited from tailored rehabilitation supported by the volunteers in their own homes

Integration of primary care and palliative care services to improve equality and equity at the end-of-life:Findings from realist stakeholder workshops

Background: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare. Aim: To address the questions: ‘how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?’ Design: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs). Findings: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n=6), commissioners (n=2), primary care (n=5) and specialist palliative care professionals (n=14). Most were White British (n=22), other ethnicities were Asian (n=3), Black African (n=1) and British mixed race (n=1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements. Conclusions: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research. <br/

Colonial Archives and the Arts of Governance

Anthropologists engaged inpost-colonial studies are increasingly adoptingan historical perspective and using archives. Yet their archival activity tends to remain morean extractive than an ethnographic one.Documents are thus still invokedpiecemeal to confirm the colonial invention ofcertain practices or to underscore culturalclaims, silent. Yet such mining of the content of government commissions,reports, and other archival sources rarely paysattention to their peculiar placement and form .Scholars need to move fromarchive-as-source to archive-as-subject. Thisarticle, using document production in the DutchEast Indies as an illustration, argues thatscholars should view archives not as sites ofknowledge retrieval, but of knowledgeproduction, as monuments of states as well assites of state ethnography. This requires asustained engagement with archives as culturalagents of ``fact'' production, of taxonomies inthe making, and of state authority. What constitutes thearchive, what form it takes, and what systemsof classification and epistemology signal atspecific times are (and reflect) critical featuresof colonial politics and state power. The archive was the supreme technology of thelate nineteenth-century imperial state, arepository of codified beliefs that clustered(and bore witness to) connections betweensecrecy, the law, and power.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/41825/1/10502_2004_Article_5096461.pd

Predictors of increasing disability in activities of daily living among people with advanced respiratory disease:a multi-site prospective cohort study, England UK

PURPOSE: Disability in activities of daily living (ADL) is a common unmet need among people with advanced respiratory disease. Rehabilitation could help prolong independence, but indicators for timely intervention in this population are lacking. This study aimed to identify trajectories of disability in ADLs over time, and predicting factors, in advanced respiratory disease.METHOD: Multi-site prospective cohort study in people with advanced non-small cell lung cancer (NSCLC), chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD), recruited from hospital or community services, throughout England. Disability in basic (Barthel Index) and instrumental (Lawton-Brody IADL Scale) ADLs were assessed monthly over six months. Visual graphical analysis determined individual trajectories. Multivariate logistic regression examined predictors of increasing disability in basic and instrumental ADLs.FINDINGS: Between March 2020 and January 2021, we recruited participants with a diagnosis of NSCLC ( n  = 110), COPD ( n  = 72), and ILD ( n  = 19). 151 participants completed ≥3 timepoints and were included in the longitudinal analysis. Mobility limitation was an independent predictor of increasing disability in instrumental ADLs (odds ratio, 1⋅41 [CI: 1⋅14-1⋅74], p  = 0⋅002). CONCLUSION: Mobility limitation could be used as a simple referral criterion across people with advanced respiratory disease to ensure timely rehabilitation that targets independence in ADLs.</p

Short-term integrated rehabilitation for people with newly diagnosed thoracic cancer: a multi-centre randomized controlled feasibility trial

© The Author(s) 2019. Objectives: The main objective of this study is to determine the feasibility of recruiting and retaining patients recently diagnosed with thoracic cancer to a trial of short-term integrated rehabilitation; evaluate uptake of theoretically informed components targeting physical function, symptom self-management and participation; estimate sample size requirements for an efficacy trial. Design: Parallel group randomized controlled feasibility trial. Setting: Three U.K. hospitals. Participants: Patients ⩽eight weeks of thoracic cancer diagnosis, Eastern Cooperative Oncology Group Performance Status 0–3, any cancer stage and treatment plan. Interventions: Participants randomly allocated (1:1) to short-term integrated rehabilitation and standard care or standard care alone over 30 days. Main measures: Primary: participant recruitment and retention, targeting ⩾30% of eligible patients enrolling and ⩾50% of participants reporting outcomes at 30 days. Secondary: intervention fidelity; missing data and performance of outcome measures for self-efficacy, symptoms, physical activity and health-related quality of life. Results: Of 159 eligible patients approached, 54 (34%) were recruited. A total of 44 (82%) and 39 (72%) participants reported outcomes at 30 and 60 days, respectively. Intervention fidelity was high. Rehabilitation was delivered across 3 (1–3) sessions over 32 (22–45) days (median (range)). Changes in clinical outcomes were modest but most apparent at 60 days for health-related quality of life: Functional Assessment of Cancer Therapy Lung Cancer score median (interquartile range) change 9.7 (−12.0 to 16.0) rehabilitation versus 2.3 (−15.0 to 14.5) standard care. Conclusion: A trial to examine efficacy of short-term integrated rehabilitation for people newly diagnosed with thoracic cancer is feasible. A sample of 336 participants could detect a meaningful effect on health-related quality of life as the primary outcome

Relationships between prolonged physical and social isolation during the COVID-19 pandemic, reduced physical activity and disability in activities of daily living among people with advanced respiratory disease

In people with advanced respiratory disease, we examined (i) the impact of COVID-19–related physical and social isolation on physical activity and (ii) relationships between time spent in isolation and disability in activities of daily living. Cross-sectional analysis was conducted in adults with advanced non-small cell lung cancer, chronic obstructive lung disease or interstitial lung disease. Measures included change in physical activity since physically and socially isolating (Likert scale) and disability (Barthel Index and Lawton–Brody IADL scale) or difficulty (World Health Organisation Disability Assessment Schedule-2.0) in daily activities. Multiple logistic regression was used to examine factors associated with disability in daily activities. 194/201 participants were isolating for a median [IQR] 5 [3–8]-month period, often leading to lower levels of physical activity at home (n = 94, 47%), and outside home (n = 129, 65%). 104 (52%) and 142 (71%) were not fully independent in basic and instrumental activities of daily living, respectively. 96% reported some degree of difficulty in undertaking daily activities. Prolonged physical and social isolation related to increased disability in basic (r = −0.28, p &lt; 0.001) and instrumental (r = −0.24, p &lt; 0.001) activities of daily living, and greater difficulty in daily activities (r = 0.22, p = 0.002). Each month spent in physical or social isolation was independently related to disability in basic activities of daily living (odds ratio [OR], 1.17 [95% CI: 1.03–1.33], p = 0.013). These findings suggest disability in daily activities is associated with prolonged physical or social isolation, which may present as difficulty in people who are fully independent. Post-isolation recovery and rehabilitation needs should be considered for all people deemed extremely clinically vulnerable.</p

Predictors of increasing disability in activities of daily living among people with advanced respiratory disease: a multi-site prospective cohort study, England UK

Disability in activities of daily living (ADL) is a common unmet need among people with advanced respiratory disease. Rehabilitation could help prolong independence, but indicators for timely intervention in this population are lacking. This study aimed to identify trajectories of disability in ADLs over time, and predicting factors, in advanced respiratory disease. Multi-site prospective cohort study in people with advanced non-small cell lung cancer (NSCLC), chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD), recruited from hospital or community services, throughout England. Disability in basic (Barthel Index) and instrumental (Lawton–Brody IADL Scale) ADLs were assessed monthly over six months. Visual graphical analysis determined individual trajectories. Multivariate logistic regression examined predictors of increasing disability in basic and instrumental ADLs. Between March 2020 and January 2021, we recruited participants with a diagnosis of NSCLC (n = 110), COPD (n = 72), and ILD (n = 19). 151 participants completed ≥3 timepoints and were included in the longitudinal analysis. Mobility limitation was an independent predictor of increasing disability in instrumental ADLs (odds ratio, 1⋅41 [CI: 1⋅14–1⋅74], p = 0⋅002). Mobility limitation could be used as a simple referral criterion across people with advanced respiratory disease to ensure timely rehabilitation that targets independence in ADLs. To our knowledge this is the first prospective cohort study of trajectories of disability in activities of daily living (ADL) in advanced respiratory disease, including recruitment during the Covid-19 pandemic.It adds to existing evidence by identifying individual variability in trajectories of ADL disability which are undetected at group level.The identification of mobility limitation as a predictor of increasing ADL disability, while controlling for malignant or non-malignant respiratory disease, is novel and has practical utility.Our findings have implications for clinical care, as early identification of functional decline through use of mobility limitation tools could flag early referral to rehabilitation services, potentially preventing or delaying forthcoming functional decline and avoiding reactive crisis management.Mobility limitation is a predictor of increasing disability in activities of daily living in advanced disease, which could be used to flag early referral to rehabilitation services, to help prevent or delay forthcoming functional decline and avoid reactive crisis management To our knowledge this is the first prospective cohort study of trajectories of disability in activities of daily living (ADL) in advanced respiratory disease, including recruitment during the Covid-19 pandemic. It adds to existing evidence by identifying individual variability in trajectories of ADL disability which are undetected at group level. The identification of mobility limitation as a predictor of increasing ADL disability, while controlling for malignant or non-malignant respiratory disease, is novel and has practical utility. Our findings have implications for clinical care, as early identification of functional decline through use of mobility limitation tools could flag early referral to rehabilitation services, potentially preventing or delaying forthcoming functional decline and avoiding reactive crisis management. Mobility limitation is a predictor of increasing disability in activities of daily living in advanced disease, which could be used to flag early referral to rehabilitation services, to help prevent or delay forthcoming functional decline and avoid reactive crisis management</p