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Reporting personal results to participants of exposure studies
The Science of the Total Environment 262 Ž2000. 191᎐195
Short communication
Reporting personal results to participants of exposure studies U
Dieter Helma, , Matti Jantunen b,1, Tuulia Rotkob a
Federal En¨ ironmental Agency, Section En¨ ironmental Monitoring, P.O. Box 33 00 22, D-14191 Berlin, Germany b KTL-National Public Health Institute, P.O. Box 95, FIN-70701 Kuopio, Finland Received 15 February 2000; accepted 12 May 2000
Abstract In most exposure studies personal results are reported to the participating subjects. This paper describes how this was achieved in two different studies, the large scale German Environmental Survey and the smaller Helsinki part of the multi-national, multi-centre EXPOLIS study. In spite of the different approaches both independently reported personal results in a very similar fashion, involving automation and graphical display of measured values. 䊚 2000 Elsevier Science B.V. All rights reserved. Keywords: Individual results; Surveillance programmes; Exposure
1. Introduction Human surveillance assess the exposure of reporting the personal of the study not only
U
studies are performed to a given population. When results to the participants correct, but also relevant
Corresponding author. Tel.: q49-30-8903-1874; fax: q4930-8903-1830. E-mail address: [email protected] ŽD. Helm.. 1 Present address: EU Joint Research Centre, Environment Institute, Air Quality Unit, I-21020 Ispra ŽVA., Italy.
and significant information must be provided. Ideally, the report should be easy to read, understandable to the layman, yet it should depict the participant’s results in way that provides him with relevant information but avoids raising undue concern. Additionally, the prospect of a detailed and informative report with the results and interpretation of one’s individual results can help in persuading hesitating respondents to participate in the study and, thus, improve the response rate ŽCallahan et al., 1995.. Especially in studies where no monetary incentives for participation were
0048-9697r00r$ - see front matter 䊚 2000 Elsevier Science B.V. All rights reserved. PII: S 0 0 4 8 - 9 6 9 7 Ž 0 0 . 0 0 5 3 3 - 7
192
D. Helm et al. r The Science of the Total En¨ ironment 262 (2000) 191᎐195
paid, the report is a motivation, on top of curiosity or care, and the only reward for the respondents. 2. Design and objectives of the studies The goal of the EXPOLIS study ŽThe Air Pollution Exposure Distributions within Adult Urban Populations in Europe. was to collect Europewide information on urban air pollution exposure ŽJantunen et al., 1997, 1998; Oglesby et al., 2000; Rotko et al., submitted.. The chief aim of the German Environmental Survey ŽGerES III. was to assess the exposure to environmental pollutants and to link the data on exposure to social factors and lifestyle ŽHoffmann et al., in press; Seifert et al., in press.. 3. Reporting results to the participants The Helsinki reports were designed to meet the following criteria: 1. they should provide true and relevant information in context with helpful facts on pollutants and their sources; 2. avoid any undue concerns and wrong conclusions; 3. avoid excessive need to explain the results personally by phone; and 4. they had to be easy to comprehend at the level that serves these purposes. Most of the EXPOLIS subjects did want their personal results. Since we did not get many phone calls after sending the reports, it could be assumed that most of the subjects did understand their results and did get the information they wanted about the measurements. There were three different groups of subjects waiting for the results: exposure sample with exposure measurements; diary sample with no measurements but questionnaire and time-activitydiary filling; and exposure sample’s employers. Three different standard letters were prepared, respectively, for these groups. A fact sheet provided general exposure information about the
measured pollutants, most typical sources, health impacts and some reference values. An explanation page was added, providing instructions how to read the result graphs ŽFig. 1.. The results were plotted for each pollutant and microenvironment as a separate figure with a population concentrationrexposure distribution curve and each subject’s position on that curve. These figures were produced automatically by a MS-Excel macro, which read the needed data from EXPOLIS Access database ŽEADB. reduced the numerical data into the population distribution figure with a dot indicating subject’s position in it. The proper standard letter for each group was added and the results were mailed. Every participant of GerES III received a report comprising his own findings, information on the most common sources of contamination, and instructions on how to reduce the exposure if necessary. In case of elevated values, free repeat measurements were offered. For medical followups the participant was encouraged to consult the family physician or the local health service. To decide whether a given body burden should be considered as ‘elevated’ or not, two different types of criteria were applied in GerES III: reference values and human biological monitoring ŽHBM. values, accounting for different levels of concern. HBM values were evolved from toxicological and epidemiological findings and can, thus, be used for a health-related judgement. Reference values are intended to indicate the upper margin of the background exposure Ž95th percentile . of the general population. Hence, they do not allow health-related evaluations ŽEwers et al., 1999.. Both reference values and HBM values have been defined for different subgroups of the general population. Each personal report contained an explanation sheet with all the definitions necessary to read and understand the different types of judgement criteria used. In case of exceedance, the report also provided information about the most common sources of this particular pollutant in simple words. Additionally, instructions were given on how to reduce the individual exposure. For more clarity the measured values were presented in the form of horizontal bar charts
D. Helm et al. r The Science of the Total En¨ ironment 262 (2000) 191᎐195
193
Fig. 1. Example of an explanation page with instructions how to read the result figures as it was used for the personal reporting in the Helsinki centre of the EXPOLIS study.
Žsee Fig. 2.. All survey data were maintained with the statistical software SPSS. A customised MS Word macro was used to read the data from the database and to generate the reports. 4. Discussion Both the Helsinki part of the EXPOLIS study and GerES III independently reported personal results in a very similar fashion, involving automation and graphical display of measured values. Though the automated process worked very quickly and well, an unexpectedly long time was spent to design and prepare this process, due to the complexity of the task, and even more due to the irreversibility and possible personal significance of the consequences. It is quite challenging to produce a report containing a quantity and depth of expert information that is easily and correctly understood by
laymen. The Helsinki reports provided distribution plots. Those with basic scientific training are able to perceive a lot of information from the shape and course of the distribution curve Žskewness, curtosis, mode, range., but it is questionable how much a layman could understand about it. The bar charts, used in GerES III are more easily understood, but also less informative. The information and its presentation must be suited for the people to whom this information is aimed. When the study population consists, to a large extent, of immigrants ŽTDH, 1999., even the language can be a barrier for communication, whilst the adult native inhabitants of European capital cities can be expected to have a high education level. 5. Conclusions Reporting results to the participating subjects
194
D. Helm et al. r The Science of the Total En¨ ironment 262 (2000) 191᎐195
Fig. 2. Example for visualisation of a participant’s results in the report of the German Environmental Survey ŽGerES III.. Elevated values are shaded.
is an important, but often underrated, part of an exposure study. The personal reporting serves two purposes. Performing a good exposure study with high response rates may require cookies to motivate the participants, one of which can be an informative personal report. Furthermore, the subject should benefit from the information about pollutants, his personal exposure, possible health risks, possible sources, and information on how the personal exposure can be reduced. All information provided must be given in a way that can be easily understood by the layman. However, in no way should the personal reporting compromise the primary study goals. For both purposes, performing a good exposure study and for the benefit of the participant, the report should: 1. provide true and relevant information and perspective; 2. not raise undue concerns, which would cause unnecessary actions; 3. give a clear signal and help for individuals with exceptionally high or risky exposures; and
4. suggest well-understood and proven remedies.
References Callahan MA, Clickner RP, Whitmore RW, Kalton G, Sexton K. Overview of important design issues for a national human exposure assessment survey. J Expos Anal Environ Epidemiol 1995;5Ž3.:257᎐282. Ewers U, Krause C, Schulz C, Wilhelm M. Reference values and human biological monitoring values for environmental toxins. Int Arch Occup Environ Health 1999;72Ž4.:255᎐260. Hoffmann K, Krause C, Seifert B. The German Environmental Survey 1990r92 ŽGerES II.: primary predictors of blood cadmium levels in adults. J Expos Anal Environ Epidemiol Žin press.. Jantunen M, Jaakkola JJK, Krzyzanowski M, editors. Assessment of exposure to indoor air pollutants, vol.78 ŽXI.. WHO Regional Publications, European Series 1997:139 Jantunen MJ, Hanninen O, Katsouyanni K, Knoppel H, ¨ ¨ Kuenzli N, Lebret E, Maroni M, Saarela K, Sram R, Zmirou D. Air pollution exposure in European cities: the EXPOLIS study. J Expos Anal Environ Epidemiol 1998;8Ž4.:495᎐518. Oglesby L, Kuenzli N, Rotko T, Krutli ¨ P, Boudet C, Kruize H, Jantunen MJ. Personal exposure assessment studies may suffer from exposure relevant selection bias. J Expos Anal Environ Epidemiol Žaccepted March 2000..
D. Helm et al. r The Science of the Total En¨ ironment 262 (2000) 191᎐195 Rotko T, Oglesby L, Kunzli N, Jantunen MJ. Population ¨ sampling in European air pollution exposure study, EXPOLIS: comparisons between the cities and representativity of the samples. J Expos Anal Environ Epidemiol Žsubmitted December 1999.. Seifert B, Becker K, Krause C, Schulz C. The German Environmental Survey 1990r92 ŽGerES II.: a representative
195
population study. J Expos Anal Environ Epidemiol Žin press.. TDH ŽTexas Department of Health.. An environmental health survey and analysis along the Texas᎐Mexico border. Available: http:rrsrph.tamu.edurhtmlrsurvey.html, 100 K Žcited 2nd December 1999..
Short communication
Reporting personal results to participants of exposure studies U
Dieter Helma, , Matti Jantunen b,1, Tuulia Rotkob a
Federal En¨ ironmental Agency, Section En¨ ironmental Monitoring, P.O. Box 33 00 22, D-14191 Berlin, Germany b KTL-National Public Health Institute, P.O. Box 95, FIN-70701 Kuopio, Finland Received 15 February 2000; accepted 12 May 2000
Abstract In most exposure studies personal results are reported to the participating subjects. This paper describes how this was achieved in two different studies, the large scale German Environmental Survey and the smaller Helsinki part of the multi-national, multi-centre EXPOLIS study. In spite of the different approaches both independently reported personal results in a very similar fashion, involving automation and graphical display of measured values. 䊚 2000 Elsevier Science B.V. All rights reserved. Keywords: Individual results; Surveillance programmes; Exposure
1. Introduction Human surveillance assess the exposure of reporting the personal of the study not only
U
studies are performed to a given population. When results to the participants correct, but also relevant
Corresponding author. Tel.: q49-30-8903-1874; fax: q4930-8903-1830. E-mail address: [email protected] ŽD. Helm.. 1 Present address: EU Joint Research Centre, Environment Institute, Air Quality Unit, I-21020 Ispra ŽVA., Italy.
and significant information must be provided. Ideally, the report should be easy to read, understandable to the layman, yet it should depict the participant’s results in way that provides him with relevant information but avoids raising undue concern. Additionally, the prospect of a detailed and informative report with the results and interpretation of one’s individual results can help in persuading hesitating respondents to participate in the study and, thus, improve the response rate ŽCallahan et al., 1995.. Especially in studies where no monetary incentives for participation were
0048-9697r00r$ - see front matter 䊚 2000 Elsevier Science B.V. All rights reserved. PII: S 0 0 4 8 - 9 6 9 7 Ž 0 0 . 0 0 5 3 3 - 7
192
D. Helm et al. r The Science of the Total En¨ ironment 262 (2000) 191᎐195
paid, the report is a motivation, on top of curiosity or care, and the only reward for the respondents. 2. Design and objectives of the studies The goal of the EXPOLIS study ŽThe Air Pollution Exposure Distributions within Adult Urban Populations in Europe. was to collect Europewide information on urban air pollution exposure ŽJantunen et al., 1997, 1998; Oglesby et al., 2000; Rotko et al., submitted.. The chief aim of the German Environmental Survey ŽGerES III. was to assess the exposure to environmental pollutants and to link the data on exposure to social factors and lifestyle ŽHoffmann et al., in press; Seifert et al., in press.. 3. Reporting results to the participants The Helsinki reports were designed to meet the following criteria: 1. they should provide true and relevant information in context with helpful facts on pollutants and their sources; 2. avoid any undue concerns and wrong conclusions; 3. avoid excessive need to explain the results personally by phone; and 4. they had to be easy to comprehend at the level that serves these purposes. Most of the EXPOLIS subjects did want their personal results. Since we did not get many phone calls after sending the reports, it could be assumed that most of the subjects did understand their results and did get the information they wanted about the measurements. There were three different groups of subjects waiting for the results: exposure sample with exposure measurements; diary sample with no measurements but questionnaire and time-activitydiary filling; and exposure sample’s employers. Three different standard letters were prepared, respectively, for these groups. A fact sheet provided general exposure information about the
measured pollutants, most typical sources, health impacts and some reference values. An explanation page was added, providing instructions how to read the result graphs ŽFig. 1.. The results were plotted for each pollutant and microenvironment as a separate figure with a population concentrationrexposure distribution curve and each subject’s position on that curve. These figures were produced automatically by a MS-Excel macro, which read the needed data from EXPOLIS Access database ŽEADB. reduced the numerical data into the population distribution figure with a dot indicating subject’s position in it. The proper standard letter for each group was added and the results were mailed. Every participant of GerES III received a report comprising his own findings, information on the most common sources of contamination, and instructions on how to reduce the exposure if necessary. In case of elevated values, free repeat measurements were offered. For medical followups the participant was encouraged to consult the family physician or the local health service. To decide whether a given body burden should be considered as ‘elevated’ or not, two different types of criteria were applied in GerES III: reference values and human biological monitoring ŽHBM. values, accounting for different levels of concern. HBM values were evolved from toxicological and epidemiological findings and can, thus, be used for a health-related judgement. Reference values are intended to indicate the upper margin of the background exposure Ž95th percentile . of the general population. Hence, they do not allow health-related evaluations ŽEwers et al., 1999.. Both reference values and HBM values have been defined for different subgroups of the general population. Each personal report contained an explanation sheet with all the definitions necessary to read and understand the different types of judgement criteria used. In case of exceedance, the report also provided information about the most common sources of this particular pollutant in simple words. Additionally, instructions were given on how to reduce the individual exposure. For more clarity the measured values were presented in the form of horizontal bar charts
D. Helm et al. r The Science of the Total En¨ ironment 262 (2000) 191᎐195
193
Fig. 1. Example of an explanation page with instructions how to read the result figures as it was used for the personal reporting in the Helsinki centre of the EXPOLIS study.
Žsee Fig. 2.. All survey data were maintained with the statistical software SPSS. A customised MS Word macro was used to read the data from the database and to generate the reports. 4. Discussion Both the Helsinki part of the EXPOLIS study and GerES III independently reported personal results in a very similar fashion, involving automation and graphical display of measured values. Though the automated process worked very quickly and well, an unexpectedly long time was spent to design and prepare this process, due to the complexity of the task, and even more due to the irreversibility and possible personal significance of the consequences. It is quite challenging to produce a report containing a quantity and depth of expert information that is easily and correctly understood by
laymen. The Helsinki reports provided distribution plots. Those with basic scientific training are able to perceive a lot of information from the shape and course of the distribution curve Žskewness, curtosis, mode, range., but it is questionable how much a layman could understand about it. The bar charts, used in GerES III are more easily understood, but also less informative. The information and its presentation must be suited for the people to whom this information is aimed. When the study population consists, to a large extent, of immigrants ŽTDH, 1999., even the language can be a barrier for communication, whilst the adult native inhabitants of European capital cities can be expected to have a high education level. 5. Conclusions Reporting results to the participating subjects
194
D. Helm et al. r The Science of the Total En¨ ironment 262 (2000) 191᎐195
Fig. 2. Example for visualisation of a participant’s results in the report of the German Environmental Survey ŽGerES III.. Elevated values are shaded.
is an important, but often underrated, part of an exposure study. The personal reporting serves two purposes. Performing a good exposure study with high response rates may require cookies to motivate the participants, one of which can be an informative personal report. Furthermore, the subject should benefit from the information about pollutants, his personal exposure, possible health risks, possible sources, and information on how the personal exposure can be reduced. All information provided must be given in a way that can be easily understood by the layman. However, in no way should the personal reporting compromise the primary study goals. For both purposes, performing a good exposure study and for the benefit of the participant, the report should: 1. provide true and relevant information and perspective; 2. not raise undue concerns, which would cause unnecessary actions; 3. give a clear signal and help for individuals with exceptionally high or risky exposures; and
4. suggest well-understood and proven remedies.
References Callahan MA, Clickner RP, Whitmore RW, Kalton G, Sexton K. Overview of important design issues for a national human exposure assessment survey. J Expos Anal Environ Epidemiol 1995;5Ž3.:257᎐282. Ewers U, Krause C, Schulz C, Wilhelm M. Reference values and human biological monitoring values for environmental toxins. Int Arch Occup Environ Health 1999;72Ž4.:255᎐260. Hoffmann K, Krause C, Seifert B. The German Environmental Survey 1990r92 ŽGerES II.: primary predictors of blood cadmium levels in adults. J Expos Anal Environ Epidemiol Žin press.. Jantunen M, Jaakkola JJK, Krzyzanowski M, editors. Assessment of exposure to indoor air pollutants, vol.78 ŽXI.. WHO Regional Publications, European Series 1997:139 Jantunen MJ, Hanninen O, Katsouyanni K, Knoppel H, ¨ ¨ Kuenzli N, Lebret E, Maroni M, Saarela K, Sram R, Zmirou D. Air pollution exposure in European cities: the EXPOLIS study. J Expos Anal Environ Epidemiol 1998;8Ž4.:495᎐518. Oglesby L, Kuenzli N, Rotko T, Krutli ¨ P, Boudet C, Kruize H, Jantunen MJ. Personal exposure assessment studies may suffer from exposure relevant selection bias. J Expos Anal Environ Epidemiol Žaccepted March 2000..
D. Helm et al. r The Science of the Total En¨ ironment 262 (2000) 191᎐195 Rotko T, Oglesby L, Kunzli N, Jantunen MJ. Population ¨ sampling in European air pollution exposure study, EXPOLIS: comparisons between the cities and representativity of the samples. J Expos Anal Environ Epidemiol Žsubmitted December 1999.. Seifert B, Becker K, Krause C, Schulz C. The German Environmental Survey 1990r92 ŽGerES II.: a representative
195
population study. J Expos Anal Environ Epidemiol Žin press.. TDH ŽTexas Department of Health.. An environmental health survey and analysis along the Texas᎐Mexico border. Available: http:rrsrph.tamu.edurhtmlrsurvey.html, 100 K Žcited 2nd December 1999..