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Table 1 Qualitative papers exploring the treatment burden experienced by patients and caregivers

From: A systematic literature review of the assessment of treatment burden experienced by patients and their caregivers

Study Disease Purpose of study Specific question / topics asked
[30] Asthma Compare the burden of disease and treatment in patients with asthma. What is your experience of having asthma? How does it affect your life?
What is your experience of asthma medicines? How effective are they and do you experience side effects?
[4] Chronic conditions Types and consequences of treatment burden. What are the effects of excessive treatment burden in patients with multimorbidity?
How might treatment burden be decreased in patients with multimorbidity?
[22] Chronic Conditions Burden of treatment regimens on consumers. Questions included perspectives on the burden of chronic illness, the burden of treatment and alleviating treatment burden.
[25] Chronic conditions Explored treatment burden among people with chronic conditions. Questions explored the extent and duration of illness, difficulties with medications, finances, relationship with healthcare professionals and daily practical challenges.
[24] Chronic Conditions Factors that patients draw on to lessen burden. How patients cared for their conditions and the impact that care had on them, including their personal life, social situation, and work. Factors that made their care easier or more difficult?
[26] Chronic conditions ICAN Discussion Aid Completed by patients and used during the encounter between patients and health professionals to understand patient capacity, workload, and treatment burden.
[20] Chronic conditions Review qualitative literature on burden of treatment 9 studies included.
Which components form the burden of treatment in the view of patients with multimorbidity?
How is the patient-experienced burden of treatment in patients with multimorbidity conceptualized in the included studies?
[19] COPD, lung cancer Review features of treatment burden in these conditions 127 articles included.
[27] COPD Explore understanding and experiences of treatment burden Explored burden from prescribed drug treatment, required health-behavior changes, and interactions with health professionals or health services. Treatment burden was then graded.
[18] Heart Failure Review qualitative literature of end-stage heart failure. 16 different articles included
[21] Heart Failure Is Normalization Process Theory a useful framework to treatment burden in heart failure? Questions included how the condition affected the patient’s life at home, ability to perform daily chores, routine, social life/leisure activities as well as if the condition prevented them from doing anything they wish to do?
[28] Heart Failure WALT instrument used to assess burden of therapy Assessed willingness to undergo therapy given the burden imposed by the therapy, the health state, likelihood of the health state and expected life extension, resulting from the therapy.
[29] CHF, COPD or cancer Effect of treatment burden on treatment preferences at the end of life. Questions on a participant’s desire for treatment: the treatment itself, quality-of-life considerations, and the issue of the uncertainty of the outcome.
[38] Cystic fibrosis Explore the perceived treatment burden of patients and its correlation with other factors. To what extent do your treatments make your daily life more difficult?
How much time do you currently spend each day on your treatments?
How difficult is it for you to do your treatments (including medications) each day?
[23] Macular Degeneration Explore the psychosocial impact of repeated intravitreal injections Semi-structured, one-on-one interviews on treatment burden and satisfaction, tolerability, barriers to adherence, treatment motivation, and patient education.
[31] PEG Report the burden of treatment from the patient perspective. Do you think that having a PEG has changed your life in any way? Is there anything which has been especially difficult, in living with a PEG?
[17] Stroke Examine the qualitative literature on stroke and treatment burden. 69 different studies included
[32] Stroke Create a conceptual model of treatment burden and patient capacity Coding framework informed by Normalisation Process Theory (NPT) to organize the patient workload of chronic disease management into the following broad categories: sense-making; interacting with others; enacting management strategies; and appraisal work.
  1. PEG Percutaneous endoscopic gastrostomies, WALT Willingness to Access Life-Sustaining Treatment, CHF Congestive Heart Failure, COPD Chronic obstructive pulmonary disease, ICAN Instrument for Patient Capacity Assessment