Focus on the patient at the center of the healthcare equation has increased over the recent decade. Not unlike patient ergonomics, treatment burden research is concerned with the work that patients do to manage chronic illness and ways of reducing its impact in service of better patient outcomes. In addition, it has focused on measurement approaches that can capture treatment burden across illness types yielding two validated instruments. In this paper, we provide a topical review of the treatment burden literature and its value to human factors; as well as discuss opportunities for subjective, objective, and surrogate measures, challenges in patient-clinician communication in detecting burden, and the role of the EHR in documentation and integration.
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References
1.
AndersonR. T.SkovlundS. E.MarreroD.LevineD. W.MeadowsK.BrodM.BalkrishnanR. (2004). Development and validation of the insulin treatment satisfaction questionnaire. Clinical Therapeutics, 26(4), 565–578.
2.
BennettS. J.MilgromL. B.ChampionV.HusterG. A. (1997). Beliefs about medication and dietary compliance in people with heart failure: An instrument development study. Heart & Lung, 26(4), 273–279.
3.
BrodM.HammerM.ChristensenT.LessardS.BushnellD. M. (2009). Understanding and assessing the impact of treatment in diabetes: The Treatment-Related Impact Measures for Diabetes and Devices (TRIM-Diabetes and TRIM-Diabetes Device). Health and Quality of Life Outcomes, 7(1), 83.
4.
ChengA. C.LevyM. A. (2019). Measures of Treatment Workload for Patients With Breast Cancer. JCO Clinical Cancer Informatics, 2, 1–10.
5.
DemainS.GoncalvesA.-C.AreiaC.OliveiraR.MarcosJ.MarquesA.ParmarR.HuntK. (2015). Living with, managing and minimising treatment burden in long term conditions: A systematic review of qualitative research. PloS One, 10(5).
6.
DoblerC. C.HarbN.MaguireC. A.ArmourC. L.ColemanC.MuradM. H. (2018). Treatment burden should be included in clinical practice guidelines. Bmj, 363, k4065.
7.
EtonD. T.de OliveiraD. R.EggintonJ. S.RidgewayJ. L.OdellL.MayC. R.MontoriV. M. (2012). Building a measurement framework of burden of treatment in complex patients with chronic conditions: A qualitative study. Patient Related Outcome Measures, 3, 39.
8.
EtonD. T.RidgewayJ. L.EggintonJ. S.TiedjeK.LinzerM.BoehmD. H.PoplauS.de OliveiraD. R.OdellL.MontoriV. M. (2015). Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions. Patient Related Outcome Measures, 6, 117.
9.
EtonD. T.YostK. J.LaiJ.RidgewayJ. L.EggintonJ. S.RosedahlJ. K.LinzerM.BoehmD. H.ThakurA.PoplauS. (2017). Development and validation of the Patient Experience with Treatment and Self-management (PETS): A patient-reported measure of treatment burden. Quality of Life Research, 26(2), 489–503.
10.
GallacherK. I.MayC. R.LanghorneP.MairF. S. (2018). A conceptual model of treatment burden and patient capacity in stroke. BMC Family Practice, 19(1), 9.
11.
GallacherK.MayC. R.MontoriV. M.MairF. S. (2011). Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. The Annals of Family Medicine, 9(3), 235–243.
12.
GellerD. E.MadgeS. (2011). Technological and behavioral strategies to reduce treatment burden and improve adherence to inhaled antibiotics in cystic fibrosis. Respiratory Medicine, 105, S24–S31.
13.
HarveyL. A.AhrénG. M. (2019). Treatment burden. Nature Publishing Group.
14.
HenryD. H.ViswanathanH. N.ElkinE. P.TrainaS.WadeS.CellaD. (2008). Symptoms and treatment burden associated with cancer treatment: Results from a cross-sectional national survey in the US. Supportive Care in Cancer, 16(7), 791–801.
15.
HoldenR. J.CarayonP.GursesA. P.HoonakkerP.HundtA. S.OzokA. A.Rivera-RodriguezA. J. (2013). SEIPS 2.0: A human factors framework for studying and improving the work of healthcare professionals and patients. Ergonomics, 56(11), 1669–1686.
16.
HoldenR. J.CornetV. P.ValdezR. S. (2020). Patient ergonomics: 10-year mapping review of patient-centered human factors. Applied Ergonomics, 82, 102972.
17.
HoldenR. J.ValdezR. S. (2019). 2019 Town Hall on Human Factors and Ergonomics for Patient Work. Proceedings of the Human Factors and Ergonomics Society Annual Meeting, 63(1), 725–728.
18.
HylandM. E.WhalleyB.JonesR. C.MasoliM. (2015). A qualitative study of the impact of severe asthma and its treatment showing that treatment burden is neglected in existing asthma assessment scales. Quality of Life Research, 24(3), 631–639.
19.
LeeS. M.MiaoJ.WuR.UngerJ. M.CheungK.HershmanD. L. (2019). A comparison of nurses’ and physicians’ perception of cancer treatment burden based on reported adverse events. Health and Quality of Life Outcomes, 17(1), 1–6.
20.
MairF. S.MayC. R. (2014). Thinking about the burden of treatment. British Medical Journal Publishing Group.
MayC. R.EtonD. T.BoehmerK.GallacherK.HuntK.MacDonaldS.MairF. S.MayC. M.MontoriV. M.RichardsonA. (2014). Rethinking the patient: Using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Services Research, 14(1), 281.
23.
MossL.CraneP. B. (2010). Exploring polypharmacy in elderly women after myocardial infarction. Journal of Women & Aging, 22(1), 22–33.
24.
Nathan-RobertsD.HoldenbR. J.YincS.ValdezdR. S. (2015). Examining patient work: The when, and how much of self-care. Proceedings 19th Triennial Congress of the IEA, 9, 14.
25.
NovakL. L.SimpsonC. L.SlagleJ.MulvaneyS. A. (2015). Technology and the Ecology of Chronic Illness in Everyday Life. Studies in Health Technology and Informatics, 215, 145–156.
26.
PapautskyE. L. (2020). It felt like I was living in a fog. The BMJ, 369.
PapautskyElizabeth Lerner. (2019). Piecing the Patient Story Back Together: Why the Patient and Caregiver Contribution Matters. Journal of Patient Experience, 2374373519831075.
29.
PapautskyElizabeth LernerHoldenR. J.ValdezR. S.BeldenJ.KaraviteD.MarquardJ.MickelsonR.MuthuN. (2018). The Patient in Patient Safety: Starting the Conversation. Proceedings of the International Symposium on Human Factors and Ergonomics in Health Care, 7(1), 173–177. https://doi.org/10.1177/2327857918071048
30.
RobertsonT. A.CookeC. E.WangJ.ShayaF. T.LeeH. Y. (2008). Effect of medication burden on persistent use of lipid-lowering drugs among patients with hypertension. The American Journal of Managed Care, 14(11), 710–716.
31.
SavA.KingM. A.WhittyJ. A.KendallE.McMillanS.S.KellyF.HunterB.WheelerA. J. (2013). Burden of treatment for chronic illness: A concept analysis and review of the literature. Health Expectations, 18(3), 312–324.
32.
SavA.SalehiA.MairF. S.McMillanS. S. (2017). Measuring the burden of treatment for chronic disease: Implications of a scoping review of the literature. BMC Medical Research Methodology, 17(1), 140.
33.
SheehanO. C.LeffB.RitchieC. S.GarriguesS. K.LiL.SalibaD.FathiR.BoydC. M. (2019). A systematic literature review of the assessment of treatment burden experienced by patients and their caregivers. BMC Geriatrics, 19(1), 262.
34.
TranV.-T.MontoriV. M.EtonD. T.BaruchD.FalissardB.RavaudP. (2012). Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Medicine, 10(1), 68.
35.
WeinerS. J.SchwartzA. (2016). Contextual Errors in Medical Decision Making: Overlooked and Understudied. Academic Medicine, 91(5), 657–662. https://doi.org/10.1097/ACM.0000000000001017
36.
WoodR.Taylor-StokesG.SmithF.ChaibC. (2019). The humanistic burden of advanced non-small cell lung cancer (NSCLC) in Europe: A real-world survey linking patient clinical factors to patient and caregiver burden. Quality of Life Research, 28(7), 1849–1861.
