Table 1 Burden of treatment framework (after Tran et al.[26])

Healthcare tasks delegated to patients

Administrative tasks

The administrative tasks involved in managing and maintaining the treatment regime. Includes reading the paperwork associated with their healthcare record and treatment schedule

Condition and treatment follow-up

The responsibility placed on patients to organise the required testing, self-monitoring and planned service utilisation. Includes precautions before/when performing tests and planning, organising and fulfilling visits to the appropriate Health care provider

Learning and developing an understanding of the illness and treatment

The process of acquiring knowledge of treatment options, side-effects, long term complications, and appropriate self-care [36]. Includes learning how to navigate the healthcare system to access timely and appropriate care associated with the treatment

Lifestyle changes

The modifiable habits and ways of life that can influence overall health and well-being [37]. Includes changing or maintaining health behaviours to minimise the impact of the treatment such as physical exercise or dietary amendments

Management of medications

The extent to which a patient takes medication as prescribed, including the correct dose and frequency, and continued, safe use over time [38]. Includes planning and organising medication intake and the safe storage in the home of appropriate amounts of medication

Organising and performing non-pharmacological treatment

Constituting science-based and non-invasive interventions on human health. intended to prevent, or address health problems [39]. They include products, methods, programs or services such as performing physical therapies

Organise formal caregiver care

The formal care provided by a healthcare institution or individual (as opposed to the informal care provided by family, or friends) [40]. Includes fulfilling self-monitoring tasks and arranging appointments

Factors that exacerbate the burden of treatment

Nature, time required, and frequency of healthcare tasks

The impact on patients of performing the tasks related to the treatment, its side-effects and the ensuing impact on symptoms. Includes planned and unplanned service utilisation

Personal factors

Characteristics of individuals includes intrinsic factors relating to resilience and inner resources, and external factors relating to the availability of social support they draw from their family, friends, community, and spiritual beliefs. Alliances built with healthcare providers

Situational factors

The contextual factors that determine whether and how patients can actively manage their healthcare including changes in personal circumstances (such as a change in job) or in personnel of their healthcare team

Structural factors

The availability and access of resources directly related to health care services. Includes coordination of care providers and knowledge and training of care providers

Consequences of healthcare tasks on patients’ daily lives

Impact on professional, social, family life, and leisure activities

The professional and social consequences that affect patients due to their treatment

This includes balancing the pursuit of meaningful activities with appropriate attention to illness needs and the opportunity cost in professional life

Financial impact of healthcare tasks on patients

Direct costs of treatment related to the value of resources used in supporting adherence, and indirect costs of treatment such as time lost from work

Emotional impact

The varying ability of patients to explore, express and process various emotions in response to the loss of health or functioning resulting from the treatment

Lack of adherence

The extent to which a person's behavior—taking medication, following a diet, and/or executing lifestyle changes—corresponds with the agreed recommendations from a healthcare provider [32]