Elsevier

Social Science & Medicine

Volume 49, Issue 12, December 1999, Pages 1571-1598
Social Science & Medicine

Psychological impact of predicting individuals’ risks of illness: a systematic review

https://doi.org/10.1016/S0277-9536(99)00244-0Get rights and content

Abstract

The aim of this review is to determine the frequency and circumstances under which predicting individuals’ risk of illness has adverse psychological effects. Using systematic review methodology, the literature was searched for studies that had assessed the adverse psychological outcomes of risk assessment programmes. The outcomes investigated are emotional (anxiety, depression, distress) cognitive (intrusive thoughts, perceptions of health) and behaviour (work absenteeism). The impact of both positive and negative test results are summarised in terms of the number of studies showing significant effects between and within groups in the short (one month or less) and longer term (more than one month). Where sufficient data were available, a meta-analysis was conducted to assess effect size. Fifty-four studies met the criteria for inclusion. The studies assessed the impact of informing individuals about cardiovascular risk (21), risk of AIDS (eight), risk of cancer (10), risk of Huntington’s disease (10), risk of diabetes (two), risk of spinocerebellar ataxia (one) and risk of osteoporosis (two). Overall, the quality of studies assessed was limited, with only two using a randomised design to determine the psychological impact of risk assessment. Receiving a positive test result was associated in the short term in the great majority of studies with depression, anxiety, poorer perceptions of health and psychological distress. Data were available for a quantitative synthesis of results on three outcomes, anxiety, depression and distress. Anxiety and depression were significantly higher in those tested positive compared with those tested negative in the short term but not the longer term. Distress could only be assessed in the longer term: there was no evidence of an increase for those receiving positive test results. The five experimental studies that reported interventions aimed at preventing some of these adverse effects all reported favourable results. There was little evidence of any adverse psychological effects of receiving an unfavourable test result. Adverse psychological effects are a common immediate consequence of positive test results following risk assessment. Results from the few experimental studies reviewed suggest that these adverse outcomes should not be seen as inevitable.

Introduction

Assessing people’s risks of developing illness using such methods as measuring blood pressure or taking family histories has formed a significant part of health care for more than 40 years (Holland and Stewart, 1990). The psychological impact of such assessments was largely unquestioned until the publication of a paper presenting compelling evidence of illness-related absenteeism following the detection of hypertension in a group of steelworkers (Haynes et al., 1978). Since then there have been numerous reports of the psychological impact of risk assessment, including anxiety, depression, intrusive and troubling thoughts, and, amongst children, absence from school and behavioural disturbance (Croyle, 1995, Marteau, 1993, Michie and Marteau, 1996).

It is to be expected that individuals will react with concern, anxiety or even depression when informed that they are at increased risk of developing a disease. Such a reaction may increase participation in further surveillance and the following of advice to reduce risks. While some distress may be helpful, too much distress can be debilitating. Not only can psychological distress reduce individuals’ quality of life, it can also interfere with their ability to understand information (Lerman and Croyle, 1995), and hence their ability to make informed choices regarding future treatment options. Psychological distress can also result in people avoiding future surveillance (Kash et al., 1992, Lerman et al., 1993).

Recent developments in molecular genetics have led to speculation that we are moving into a new era of predictive medicine, in which it will be possible to test for a variety of genes and other markers to determine the chances that an individual will at some point in the future develop one or more of a range of diseases (Department of Health, 1995). The objective of such predictive testing is to determine who is at increased risk and hence may benefit from early interventions.

Determining the impact of previous risk assessment programmes, through a systematic literature review, is an important component in developing and delivering new predictive tests in ways that will minimise any adverse effects and maximise their potential to confer benefits. The aims of this systematic review are to determine the psychological outcomes in adults of risk assessment for genetic and other conditions, and to examine the possible factors accounting for variance in outcomes between and within studies.

Section snippets

Problem formulation

Risk assessment, risk factor testing and predictive testing are interchangeable terms, used in different areas to refer to similar activities. These three terms were defined for the purposes of this review to refer to any intervention that involves providing information about the chances that an asymptomatic individual will develop a particular disease. This information could be derived from assessment of various markers for disease, including genetic analysis (e.g., testing for risk of

Results

Fifty four studies met the criteria for inclusion: 21 on cardiovascular disease, eight on AIDS, ten on cancer, ten on Huntington’s disease, two on diabetes, two on osteoporosis and one on spinocerebellar ataxia (SCA). The quality of the studies that met the inclusion criteria is shown in Appendix A (pp. 1581–1594), Appendix B, in which full details of the papers included in this systematic review are provided.

Discussion

The results of this systematic review show that receipt of a positive result on predictive testing for risk of disease is associated, in the majority of studies, with psychological distress, anxiety and depression in the first four weeks after testing, but in only a minority of studies are such effects evident one month or more later. Increased absenteeism was also evident, but in only a minority of studies. Meta-analysis of the results of studies measuring anxiety and depression showed a

Acknowledgements

This work was funded by a grant from the Department of Health, Welsh Office. Theresa Marteau is supported by The Wellcome Trust. We gratefully acknowledge guidance from the NHS R&D Centre for Reviews and Dissemination in conducting this systematic review.

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