Longitudinal trajectories of treatment burden: A prospective survey study of adults living with multiple chronic conditions in the midwestern United States

Abstract

Objectives Determine whether there are different longitudinal patterns of treatment burden in people living with multiple chronic conditions (MCC) and, if so, explore predictors that might reveal potential routes of intervention. Methods We analyzed data from a prospective mailed survey study of 396 adults living with MCC in southeastern Minnesota, USA. Participants completed a measure of treatment burden, the Patient Experience with Treatment and Self-management (PETS), and valid measures of health-related and psycho-social concepts at baseline, 6, 12, and 24 months. Latent class growth mixture modeling (LCGM) determined trajectories of treatment burden in two summary index scores of the PETS: Workload and Impact. Multivariable logistic regressions were used to identify independent predictors of the trajectories. Results LCGM supported a 2-class model for PETS Workload, including a group of consistently high workload ( N = 69) and a group of consistently low workload ( N = 311) over time. A 3-class model was supported for PETS Impact, including groups of consistently high impact ( N = 62), consistently low impact ( N = 278), and increasing impact ( N = 51) over time. Logistic regression analyses showed that the following factors were associated with patterns of consistently high or increasing treatment burden over time: lower health literacy, lower self-efficacy, more interpersonal challenges with others, and worse subjective reports of physical and mental health (all p < .05). Conclusions Different longitudinal patterns of treatment burden exist among people with MCC. Raising health literacy, enhancing self-efficacy, and lessening the effects of negative social interactions might help reduce treatment burden.

Change in treatment burden among people with multimorbidity: a follow-up survey

“…Increasing impact was associated with more physically unhealthy days and higher interpersonal challenges with others. [35] Our study was only able to assess two time points, had an older population and considered a different range of LTCs, and, in contrast to their findings, identified higher number of LTCs as independently associated with increasing treatment burden, and assessed aspects of access to healthcare, of which distance from a GP was independently associated. Some important differences in these studies are summarised in Supplementary Table 4.…”

“…[17,34] A recent prospective study in the US evaluated treatment burden trajectories among 396 people (aged 20+) with multimorbidity. [35] The study measured treatment burden at four time points over two years and identified differing patterns of change between treatment burden 'workload' and 'impact'. Workload trajectory was broadly represented in two groups -persistently high and persistently low, while impact had three patterns -consistently high, increasing, and consistently low.…”

Research policy for people with multiple long-term conditions and their carers

“…This points to a possible misunderstanding of their lived experience. 25 Many environments fail to accommodate a combination of complexity and nuance, and there can be open hostility, especially for children with behavioural difficulties. People with MLTC said they wanted a better understanding of what drives stigma, and interventions to reduce barriers to participation in everyday life.…”

The impact of living with multiple long-term conditions (multimorbidity) on everyday life – a qualitative evidence synthesis

“…15 The variable nature of the work associated with MLTCs is in line with previous research in both the US and the UK demonstrating a change in treatment burden over time among people living with MLTCs. 97,98 Our identification of unpredictability/uncertainty as part of our accumulation and complexity theme also links to Etkind et al's model of uncertainty for people living with advanced MLTCs. 66 The domains of 'appraising and managing multiple illnesses', 'fragmented care and communication', 'feeling overwhelmed' and 'continual change' were all concepts in our work themes.…”