Demand for ineffective or unproven treatments will continue to rise unless a more concerted effort is made to help people make informed decisions
Citation: Hutchinson A (2015) Patients’ expectations of treatments and tests. Nursing Times; 111: 28/29, 24.
Author: Andy Hutchinson is technical adviser - medicines education, Medicines and Prescribing Centre, National Institute for Health and Care Excellence
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People are offered a wide range of interventions as part of their care, including medicines, surgery or other treatments, and diagnostic or screening tests. The National Institute For Health and Care Excellence’s (2012) guideline on patient experience in adult NHS services recommends giving people the information and support they need to participate actively in care and self-management. This includes:
- Discussing the risks, benefits and consequences of investigation or treatment options;
- Clarifying what patients hope these will achieve, and discussing any misconceptions.
A systematic review has assessed the evidence from studies that quantitatively measured patient or public expectations of the benefit or harm of treatments, diagnostic tests or screening tests (Hoffman et al, 2015). The authors included data from 35 studies in 16 countries, involving 27,323 participants. Examples of the study topics included infliximab for inflammatory bowel disease, hormone replacement therapy (HRT), statin therapy, cataract surgery, cardiopulmonary resuscitation, mammography, prostate-specific antigen testing, bowel cancer screening and scans for fetal abnormalities.
For 34 outcomes, quantitative data was available about estimation of benefits by study participants to compare with the primary study authors’ estimates of the “correct” answers. The majority of participants overestimated the likely benefits of 22 (65%) of these outcomes, such as the number of breast cancer deaths prevented by mammography. Most people correctly estimated the likely benefits for two outcomes (improved vision after cataract surgery and accuracy of cervical smear tests) and underestimated the benefits for one outcome (improved lower back pain after back surgery). There was no majority overestimation or underestimation for the remaining nine outcomes.
For 17 other beneficial outcomes, the review authors could not calculate the proportion of participants who overestimated or underestimated benefit. However, for 15 (88%) of these outcomes, the primary study authors concluded that participants overestimated benefits.
Conversely, most study participants underestimated likely harms for 10 (67%) of the 15 outcomes for which such data were available (for example, the risk of death or adverse events with infliximab). Most people correctly estimated the number of people likely to need glasses after cataract surgery and the risk of miscarriage from amniocentesis but overestimated the risk of breast cancer with HRT.
Strengths of this systematic review include the diversity of interventions studied and countries included. However, this diversity made it difficult for the authors to compare individual studies.
Some studies had small or selective samples. There is likely to have been variation in methods of assessing participants’ expectations, criteria for deciding whether an expectation was an under- or overestimated and participants’ backgrounds.
Box 1. Commentary
The authors have usefully focused attention on a major issue - that the public is overoptimistic about the benefits of treatment, screening and diagnostic tests. We can have no hope of ensuring medical care delivers best value until people have a more balanced understanding of its limitations.
The overoptimism may stem from various sources, including difficulty accessing reliable information, media distortions, commercial influences, advice from overoptimistic clinicians and a general tendency to want good news, not bad. Such influences cause distortions in medical decision making, making patients unaware of the risks or trade-offs involved. This undermines the principle of informed consent.
One way to deal with the problem is to ensure people receive clear, unbiased, evidence-based information - such as patient decision aids - at the point of decision making. Plenty of evidence indicates that patients want this type of information, but many don’t receive it. Demand for ineffective or unproven treatments will continue to rise unless we make a more concerted effort to help people make informed decisions.
Angela Coulter is senior research scientist, Nuffield Department of Population Health, University of Oxford
National Institute for Health and Care Excellence (2012) Patient Experience in Adult NHS Services: Improving the Experience of Care for People using Adult NHS Services.
Hoffmann TC et al (2015) Patients’ expectations of the benefits and harms of treatments, screening, and tests: a systematic review. JAMA Internal Medicine; 175: 2, 274-286.