Table 1.
Data extraction of the definitions.
| ID | Treatment Burden Definition | Rating (out of 6) | Criteria∗ |
|---|---|---|---|
| Abu Dabrh et al. (2015) | The burden of treatment: multi-dimensional phenomenon describes the added and ongoing workload (i.e. requirements and demands) for patients in order for them to adhere to recommendations made by their clinicians to manage their morbidity and wellbeing. It also reflects the barriers patients face as they navigate through this journey of healthcare. Treatment workload encompasses the tasks carried out by patients to manage their illness (e.g. taking medications, reading information leaflets, arranging transportation to appointments, making lifestyle changes). | 3 | M, D, T |
| Boehmer et al. (2016) | Treatment burden can be defined as treatment work, delegated by health care systems to patients and its impact on their functioning and well-being; there are growing demands on patients to organize their own care and self-manage to comply with complex regimens. | 2 | M, T |
| Bohlen et al. (2012) | We defined BOT as treatment related effects that limit the patient's ability to participate in activities and tasks that are crucial to his or her quality of life and that are not attributable to underlying disease. | 3 | M, W, T |
| Boyd et al. (2014) | Treatment burden is defined here as a patient's perception of the aggregate weight of the actions and resources they devote to their healthcare, including difficulty, time, and out-of-pocket costs dedicated to the healthcare tasks such as adhering to medications, dietary recommendations, and self-monitoring. | 5 | M, W, D, C, T |
| Demain et al. (2015) | “the self-care practices that patients with chronic disease must perform to enact management strategies and respond to the demands of healthcare providers and systems”. | 2 | W, T |
| Eton et al. (2012) | The workload of health care and its impact on patient functioning and well-being. "Workload'' includes the demands made on a patient's time and energy due to treatment for a condition(s) as well as other aspects of self-care (eg, health monitoring, diet, exercise). “Impact” includes the effect of the workload on the patient's behavioral, cognitive, physical, and psychosocial well-being. | 2 | M, T |
| Eton et al. (2016) | Treatment burden refers to the personal workload of healthcare, including treatment and self-management of chronic health conditions, and the impact of this workload on patient functioning and well-being. Workload identifies the activities that patients are asked or required to do in order to care for their health (e.g., taking medications, maintaining medical appointments, monitoring health status, engaging in physical therapy). Impact refers to a patient's perception of the effect of the workload on role, social, physical, and psychological functioning. Financial challenges, confusion about medical information, and challenges with the healthcare system may add to the weight of the burden that is felt by the patient. | 3 | M, D, T |
| Fraser and Taal (2016) | Treatment burden comprises objective treatment related tasks (e.g. attending appointments, taking multiple medications, dose-adjustment, tests, interventions, including attending dialysis) and perceived treatment burden (patients' experience of the demands placed on them by clinicians and the health system). | 3 | M, D, T |
| Gallacher et al. (2013a) | Treatment burden can be defined as the “workload” of health care that patients must perform in response to the requirements of their healthcare providers as well as the “impact” that these practices have on patient functioning and well being. “Workload” includes the demands made on a patient's time and energy due to treatment for a condition (s) (e.g. attending appointments, undergoing investigations, taking medications) as well as other aspects of selfcare (e.g. health monitoring, diet, exercise). “Impact” includes the effect of the workload on the patient's behavioural, cognitive, physical, and psychosocial well-being. | 3 | M, D, T |
| Gallacher et al. (2013b) | ‘Treatment burden’ is a novel concept describing the self-care practices that patients with chronic disease must perform to enact management strategies and respond to the demands of health care providers and systems. Individuals will vary in their capacity to accommodate and enact such practices, which may have a marked impact on patient functioning and well-being, and on adherence to management plans. | 1 | M |
| Heckman et al. (2015) | Demands associated with disease management represent treatment burden. | 1 | M |
| Sav et al. (2013a) | Treatment burden refers to the consequences they experience as a result of undertaking or engaging in treatment, such as medications, therapies, medical interventions etc. | 2 | M, W |
| Sav et al. (2013b) | Treatment burden: a person's subjective and objective overall estimation of the dynamic and multidimensional burden that their treatment regimen for chronic illness has imposed on them and on their family members. | 1 | W |
| Tran et al. (2012) | Treatment burden can be defined as the impact of health care on patients' functioning and well-being, apart from specific treatment side effects. It takes into account everything patients do to take care of their health: visits to the doctor, medical tests, treatment management, and lifestyle changes. | 3 | M, W, C |
| Tran et al. (2014) | Treatment burden is defined as the ‘work’ of being a patient and its effect on the quality of life (QOL) of patients. It represents the challenges associated with everything patients have to do to take care of themselves (e.g. medication intake, drug management, self-monitoring, visits to the physician, laboratory tests, lifestyle changes, administrative tasks to access and coordinate care). | 3 | M, D, T |
| Tran et al. (2015) | Treatment Burden Defined as the impact of the ‘work of being a patient’ on functioning and well-being. This work includes drug management, self-monitoring, visits to the doctor, laboratory tests, lifestyle changes, and other actions that take place in addition to the other work patients and their caregivers must do as part of life. | 4 | M, W, D, C |
∗ The criteria are based on the quality appraisal mentioned in the Methods: M: usable in multiple diseases; W: well-articulated and concise; D: includes main domains of treatment burden; C: applicable in clinical practice; T: differs from other types of burden; P: based on patients' participation.