Improving understanding of disability in activities of daily living among adults with advanced cancer or respiratory disease and implications for clinical care

Student thesis: Doctoral ThesisDoctor of Philosophy


The population living with advanced cancer or respiratory disease is aging, resulting in changing care needs. Difficulty or inability to perform daily activities, known as disability in activities of daily living (ADLs) is one of the most common unmet needs in these populations.The prevalence of disability in ADLs is set to rise, resulting in a greater demand for care and rehabilitation. Rehabilitation interventions targeting disability in ADLs could help people maintain independence and delay or reduce need for care, but rehabilitation provision is currently inadequate across cancer and respiratory services. A better understanding of disability in ADLs and factors influencing change over time would help improve timing and delivery of rehabilitation interventions and equity in service provision.

To understand and compare disability in activities of daily living (ADLs) among adults with advanced cancer or respiratory disease, thereby informing future rehabilitation intervention(s).

An observational study was conducted consisting of two components with convergent design.
Component 1: Secondary analysis of data from the International Access Rights and Empowerment programme (IARE), pooled from two studies relating to older people receiving palliative care (IARE I) or frail elderly (IARE II). The selected sample consisted of people with advanced solid cancer or Chronic Obstructive Pulmonary Disease (COPD). Measures assessed disability in basic ADLs (Barthel Index), symptom severity (Palliative care Outcome Scale), and assistive device use (self-reported).
Component 2: A multi-site prospective cohort study in people with advanced non-small cell lung cancer (NSCLC), COPD or Interstitial Lung Disease (ILD). Self-reported questionnaires were completed at baseline and then monthly over 6-months. Primary measures for basic and instrumental ADLs were assessed using the Barthel Index and the Lawton–Brody IADL Scale respectively. Explanatory variables included difficulty in daily activities (World Health Organization Disability Assessment Schedule-2.0), symptom severity (Palliative care Outcomes Scale - Symptoms), and physical and social isolation (self-reported). The latter measure was introduced in response to the Covid-19 pandemic.

Univariable and multiple variable logistic regression analysis was used to examine factors associated with disability in ADLs cross-sectionally at baseline, in components 1 and 2. Visual graphical analysis explored individual disability trajectories. Longitudinal data from the cohort study were analysed prospectively over six months and summary statistics were used to determine trajectories of ADL disability at group level. Univariable associations for variables recorded at baseline, between each basic ADL and instrumental ADL disability trajectory (increasing, decreasing, fluctuating) compared to the stable trajectory were explored using the Mann-Whitney-u test and chi-square test of independence. Multiple variable logistic regression analysis was used to examine factors associated with increasing disability in basic and instrumental ADLs over 6-months. Significance levels were set at 0.01 to account for
multiple testing.

Component 1: The pooled sample consisted of 159 participants (140 (94%) cancer, 19 (6%) COPD). 79% had disability in basic ADLs, which was most prevalent in stair climbing (65%), bathing (48%), dressing (39%), and mobilising (36%). Greater disability was independently associated with increased symptom burden (odds ratio, 1.08 [95% CI:1.02-1.15], P=0.01) and walking unaided (z=2.35, P=0.02), but not with primary diagnosis (z=0.47, P=0.64). There was wide inter-individual variation for change in disability in basic ADLs over time.
Component 2: Between March 2020 and January 2021, 110 NSCLC, 72 COPD, 19 ILD (121 (60%) had stage IV disease) participants were recruited, during the first year of the UK Covid-19 pandemic. At baseline, 104 (52%) and 142 (71%) were not fully independent in basic and instrumental ADLs, respectively. One-hundred-and-ninety-seven (96%) had difficulty in
undertaking daily activities.
In the cross-sectional analysis, disability in basic ADLs was independently related to prolonged physical and social isolation (odds ratio [OR], 1.17 [95% CI: 1.03– 1.33], p=0.01), COPD or ILD (OR, 4.00 [95% CI: 1.20–8.14], p<0.001), and increased symptom severity (OR, 1.12 [95% CI: 1.06–1.19], p<0.001). Disability in instrumental ADLs was independently related to COPD or ILD (OR, 3.6 [95% CI: 1.41–7.10], p=0.005) and increased symptom severity (OR, 1.14 [95% CI:
1.07–1.22], p<0.001).
In the longitudinal sample (n=151), individual trajectories of ADL disability revealed wide variation in individual change, which were masked at group-level. Four different patterns emerged: increasing, decreasing, fluctuating, or stable. No independent predictors of basic ADL disability were identified. The only independent predictor of increasing disability in instrumental ADLs was difficulty mobilising (controlling for baseline diagnosis, symptom severity, disability in ADLs, age, sex, living status, assistive device use, and physical activity).
Every increase of 1 point on the WHODAS-2.0. mobility domain, increases the odds of a person following a trajectory of increasing disability in instrumental ADLs compared to a stable trajectory (odds ratio, 1.41 [CI: 1.14-1.74], p=0.002).

Disability in ADLs affects over half of people with advanced cancer or respiratory disease. Instrumental ADLs are more commonly affected than basic ADLs. Greater symptom severity and Covid-19-related physical and social isolation are associated with increased ADL disability at baseline. There is wide individual variability in disability over time, however, an increasing disability trajectory can be predicted by mobility limitation, which could be used to prompt referral to rehabilitation services. In clinical care, screening for mobility limitation is indicated among people with increased symptom severity, and people who have been physically or socially isolated. When assessing ADL disability, the measurement of difficulty and dependency is recommended, and disability management should be aligned with good symptom control. Further investment into rehabilitation is required to implement these recommendations and improve services for these groups.
Date of Award1 Aug 2022
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorMatthew Maddocks (Supervisor), Irene Higginson (Supervisor) & Stephen Ashford (Supervisor)

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