Occupational Medicine Advance Access originally published online on July 17, 2006
Occupational Medicine 2006 56(5):329-337; doi:10.1093/occmed/kql059
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Symptoms, ill-health and quality of life in a support group of Porton Down veterans
1 University of Oxford, Oxford OX3 7LF, UK
2 London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK
3 Imperial College of Science, Technology and Medicine, London SW7 2AZ, UK
Correspondence to: Katherine M. Venables, Department of Public Health, University of Oxford, Old Road Campus, Oxford OX3 7LF, UK. Tel: +44 1865 227034; fax: +44 1865 226720; e-mail: kate.venables{at}dphpc.ox.ac.uk
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Abstract |
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Background There has been a Human Volunteer Programme at the British chemical weapons research facility at Porton Down since the First World War, in which some of the participants were exposed to chemical warfare agents.
Aim To identify any striking specific morbidity patterns in members of the Porton Down Veterans Support Group (PDVSG).
Methods A self-completed postal questionnaire was prepared including health immediately after the visits to Porton Down, subsequent diagnoses and hospital admissions, symptoms in, and after, the first 5 years after the visits, fatigue symptoms and current quality of life, measured using the SF-36.
Results Responses were received from 289 of 436 (66%). Results reported here relate to 269 male respondents of mean age 66.8 years. Sixty-six per cent reported their first visit to Porton Down in the 1950s. The most common diagnoses or hospital admissions reported were diseases of the circulatory system. In the first 5 years after their visits the most common symptoms were headache, irritability or outbursts of anger and feeling un-refreshed after sleep. In the later period, most common symptoms were fatigue, feeling un-refreshed after sleep and sleeping difficulties. Sixty-five per cent met the definition for a case of ‘fatigue’. Current quality of life dimensions were consistently lower than age-specific estimates from general population samples.
Conclusions Members of the PDVSG responding to this survey reported poorer quality of life than the general population. Despite there being no clear pattern of specific morbidities, we cannot rule out ill-health being potentially associated with past experience at Porton Down.
Keywords Chemical warfare agents; quality of life; symptoms; veterans
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Introduction |
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A chemical weapons research facility was established in the United Kingdom at Porton Down during the First World War. Since its inception in 1916, at least 30 000 British servicemen have taken part in experiments within the Human Volunteer Programme which has studied the potential effects on military capability of exposure to chemical warfare agents and, in particular, the effectiveness of protective measures against them. Between 1939 and 1989, up to 20 000 members of the armed forces have taken part in tests involving a wide range of chemicals including nerve agents (e.g. sarin), blister agents (e.g. mustard), riot control agents (e.g. CS) and central nervous system incapacitants (e.g. LSD). It is estimated that
7000 of these veterans are still alive and a number of them have recently expressed concerns about long-term health impairments they attribute to taking part in tests at Porton Down. A review of possible long-term effects of several agents was published in 2000 [1] and a review specifically relating to mustard gas and lewisite exposure was published by the US Institute of Medicine in 1993 [2]. In 2002, the Medical Research Council (MRC) commissioned a large programme of research on the health of the Porton Down veterans. The main part of this work, which is currently underway, involves a cohort study of mortality and cancer incidence in up to 40 000 veterans: those who went to Porton Down between 1939 and 1989 and a similar group of veterans who did not. An initial part of the research programme included a small exploratory health survey of a specific group: all of the 436 members of the Porton Down Veterans Support Group (PDVSG). The purpose of the health survey was to describe the morbidity experienced by the PDVSG members and identify any striking specific morbidities which might have been unsuspected previously. Wherever possible, standard questions were used to enable comparisons with similar data collected from general population surveys. Ideally, the study would have included a representative sample of all Porton Down veterans with a comparison group of veterans who did not go to Porton Down but this was not considered practicable by the scientific advisors to the funders, given the level of funding.
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Methods |
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Veterans invited to take part in the health survey were members of the PDVSG, a voluntary mutual support group which circulates a newsletter to its membership and maintains a web page. In addition to the veterans, members also include some spouses and relatives of deceased veterans.
A self-completed postal questionnaire was designed containing sections relating to personal characteristics of the veteran; their experiences of tests, including chemical exposures and information provided to them at the time; current state of health and quality of life; health immediately after the tests; subsequent clinical diagnoses and hospital admissions for at least 24 h; a symptoms check-list relating to two time periods (within 5 years and >5 years after the tests); symptoms associated with fatigue; reproductive health; alcohol and tobacco consumption and open questions on the perceived effects on subsequent health of taking part in tests at Porton Down.
Questions regarding exposure were derived from a questionnaire used in the Ministry of Defence's voluntary Medical Assessment Programme (MAP) for Porton Down veterans [3]. Current quality of life was assessed using version 2 of the SF-36 questionnaire, one of the most widely used generic measures of subjective health status [4,5]. The symptoms check-list was derived from that used in a study of British soldiers in the first Gulf War [6] with the modification that respondents were asked to compare their symptoms to people of comparable age. The fatigue scale was derived from an established set of questions [7] with a case of ‘fatigue’ defined as someone scoring 4 or above [8]. Reproductive history questions were adapted from a study of reproduction and child health among British Gulf War veterans [9]. Smoking questions were taken from the 1986 MRC respiratory symptoms questionnaire [10].
A draft version of the questionnaire, an accompanying letter, information sheet and consent form were piloted by six members of the PDVSG in November 2002 and modified accordingly.
The questionnaire materials were mailed in July 2003, after a delay at the request of the PDVSG. Two further mailings were made to non-respondents or, in the case of overseas residents, one further mailing to ensure that questionnaires were completed at a comparable time. Researchers set up and answered queries from a telephone helpline for respondents during July–October 2003.
All questionnaires were entered in duplicate to minimize data entry errors. Reported clinical diagnoses and reasons for hospital admissions were coded according to the Tenth Revision of the International Classification of Diseases (ICD-10) [11]. Decisions on grouping the codes were made prior to examination of the data. SF-36 scores were compared with those from four studies which provided general population data from surveys including older people: the 1996 Health Survey for England; the Office for National Statistics omnibus survey in Great Britain and two Oxford Healthy Life Surveys for 1991–92 and 1997 [12,13]. Reported exposures received during tests were derived by combining responses to an open question and a check-list. Owing to project resource constraints, responses to other open questions have not been coded. Descriptive statistics and graphs were prepared using Stata 7 and SPSS for Windows 12.0.0.
Ethical approval was obtained from the South-East Multicentre Research Ethics Committee (02/01/115) and the Defence Medical Services Clinical Research Committee.
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Results |
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Survey materials were sent to all 436 current PDVSG members. Five were returned undelivered because the address was incorrect. Of the remaining 431, 289 (67%) returned completed questionnaires, 44 (10%) declined to participate and there was no response from 98 (23%). Nineteen questionnaires were completed by a surrogate respondent on behalf of a deceased male veteran and one questionnaire was returned by a living female veteran. PDVSG members who were spouses or relatives of deceased Porton Down veterans were less likely to return a completed questionnaire (47% of 43) than PDVSG members who were living veterans (68% of 393). Unless stated otherwise, the results presented in this paper relate to the 269 living male veterans who either responded personally (266) or for whom a surrogate responded (3).
The 269 male PDVSG respondents ranged in age from 32 to 88 years, with a mean of 66.8 years (SD 8.3) (Table 1). All but six veterans (98%) reported ever being married and 86% were currently living with a wife or partner. Over half (60%) had left school before taking O levels or GCSEs and all but one were white (Table 1). Although none were currently serving in the armed forces, 60 (22%) were in employment at the time of the survey.
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Most men (81%) reported being current drinkers of alcohol at the time of survey, 15% drinking 21 units/week or more (Table 1). The majority (75%) reported smoking, either currently (20%) or in the past, on average smoking a pack of (20) cigarettes a day for 33.1 (SD 24.4) years.
Two-thirds of respondents reported having made their first visit to Porton Down during the 1950s (66% of 259) (Table 1). The earliest reported visit was made in 1939 and the latest in 1990. Respondents were, on average, aged 21 years (SD 2.8) at their first visit. Most (93% of 259) men reported having visited Porton Down in only one calendar year. Tests involving nerve agents were reported most frequently (59%), with 51% reporting exposure to a blister agent and 46% reporting tests involving other substances (Table 2). The most frequently reported circumstances of the tests involved a chamber (80%); tests involving a pill, tablet or drink were recalled least (21%) (Table 2).
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The majority (83%) of respondents rated the quality of information provided at the time of the tests about the purpose or nature of tests at Porton Down as poor or very poor. This percentage fell from 87 for respondents tested pre-1960 to 71 for those tested after 1969 (Appendix Table 1, available as supplementary data at Occupational Medicine Online).
Two-thirds of male PDVSG respondents (68%) recalled experiencing a physical reaction within the first few days of a test at Porton Down and 36% recalled a health problem within the first month. The majority (92%) reported at least one doctor-diagnosed illness or hospital admission for >24 h between the last visit to Porton Down and the date of survey. As might be expected, this percentage tended to increase with age (Table 3). There was no apparent relationship between type of reported exposure and doctor-diagnosed illness or hospital admission overall (Table 3).
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Specific doctor-diagnosed illnesses or hospital admissions, as coded according to ICD-10 (lifetime, since Porton Down visit), are presented in Table 4. Illnesses and admissions are counted as many times as they were reported. The results are ordered according to the magnitude of the prevalence estimates for each of the major coding groups. Reported diseases of the circulatory, digestive and musculoskeletal systems were the most prevalent.
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The prevalence estimates of reported symptoms were derived from the question asking ‘compared to people of your age at the time, have you experienced more of the following [symptoms]?’. These related to two time periods: the first 5 years following the visits to Porton Down and after the first 5 years (Table 5). Fatigue, feeling un-refreshed after sleep and sleeping difficulties were in the top five for both time periods. The median number of symptoms reported was three (out of the total of 48) in the first 5 years and 14 (out of 48) after the first 5 years (Appendix Figure 1, available as supplementary data at Occupational Medicine Online).
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Figure 1 shows mean quality of life scores derived from the SF-36 questionnaire, which may range from 0 (worst possible quality of life) to 100 (best possible quality of life). The results are stratified by age and the age-specific mean scores from the four normative datasets specified earlier are presented. It can be seen that the mean quality of life scores for the male PDVSG respondents were lower than scores from the general population in each age group and for each dimension.
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Reporting on symptoms in the last few weeks, 160 (65%) respondents met the definition for a case of fatigue.
Most (93%) respondents had fathered a pregnancy, or tried to father a pregnancy, with a median of two live-born children (Appendix Table 2, available as supplementary data at Occupational Medicine Online). Of those ever attempting to father a pregnancy, 25% (62 of 249) had fathered at least one which ended in a miscarriage, stillbirth, other adverse pregnancy outcome or neonatal death. Ten per cent reported that they, or a partner, had consulted a doctor because of problems with getting pregnant.
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Discussion |
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This morbidity survey collected information on medical histories, symptoms and quality of life from a group of the veterans who took part in experiments at Porton Down between 1939 and 1990. One notable finding from this survey is that the current self-reported quality of life of respondents was worse than that of men in the general population of a similar age; other findings relating to medical histories and symptoms are discussed below. Notwithstanding issues discussed below relating to selection, measuring current quality of life using the SF-36 questionnaire enabled us to compare results with those of men in the general population of similar age. We identified four general population samples from the United Kingdom which included older age groups [12,13]. For each age group, and for each dimension of this measure, current quality of life in these male PDVSG respondents was lower than in the general population. This finding adds information to the recent study of 111 Porton Down veterans who attended the Ministry of Defence's voluntary MAP which did not collect information on quality of life and apparently found no evidence of excess morbidity [3].
These veterans were members of an active support group and therefore inherently different from a representative sample of Porton Down veterans obtained by random sampling. The PDVSG are a small fraction (6%) of the total number (estimated at 7000) of Porton Down veterans from 1939–89 who are thought to be still alive. Respondent members of the PDVSG inevitably carried with them not only factors associated with their experience at Porton Down but also those associated with becoming a member of a support group, plus any factors associated with responding to a survey. The factors associated with membership of any support group such as the PDVSG are likely to include concern about the potential for long-term health effects and, possibly, the presence of symptoms.
Considering medical histories, the most commonly reported diagnoses and reasons for hospital admission were diseases of the circulatory system (38% of 269). In contrast to quality of life, normative data for doctor-diagnosed illnesses and admissions to hospital over the adult lifetime were not readily available. For reproductive history, however, the distribution of the number of live-births seems to generally fit the average family size expected for men born in the United Kingdom between approximately 1930 and 1950 [14]. When interpreting the finding that 10% of the group reported consulting a doctor for difficulties conceiving, it is interesting to note that in a large survey of male UK nuclear industry workers a similar proportion of men >40 years of age (11%) reported that they had contacted a medical practitioner regarding difficulties conceiving [15].
Considering fatigue symptoms, while we have not identified appropriate normative data for older populations, a postal survey was carried out of all patients aged between 18 and 45 years in three London and three rural or semi-rural general practitioner practices in the United Kingdom; of 6532 men surveyed 31% met the definition for a case of fatigue, compared to 65% in the present study [16]. It is possible, however, that the higher prevalence in the respondent members of the PDVSG reflects their older age. For other symptoms, it is possible to compare the present findings with those from veterans of the first Gulf War who, although younger, are also military veterans. The five most prevalent symptoms reported as occurring in the first 5 years after tests at Porton Down were similar to those reported by British Gulf War veterans [6,17]. For symptoms reported as experienced since the first 5 years after visiting Porton Down, three of the top five, and six of the top ten, symptoms are similar to those reported by the Gulf War veterans. The significance of this similarity is unclear because there is considerable overlap in symptom patterns reported following wars and other potentially harmful experiences [18]. The older age of many of the PDVSG membership and the long interval since visiting Porton Down does not rule out post-traumatic stress disorder, which can occur in later life [19].
Our study should also be placed in the context of other information on the morbidity of veterans of chemical warfare research programmes assembled from the United States. The Institute of Medicine in the United States reported in 1993 the findings of a committee convened to survey the literature relevant to health effects of mustard gas and lewisite exposure [2]. As part of its work, this committee held a public hearing and responses were received from 257 veterans of the American chemical warfare research programme. A wide variety of diagnoses were reported but the committee commented that it was difficult to interpret this information. In the United Kingdom, detailed information on the experience and health of several individual Porton Down veterans was presented during a parliamentary debate in 2005 and is available in Hansard [20]. In contrast to these other sources of information, the present study has made comparisons with published normative data and has shown that the PDVSG members who responded to the survey had worse current quality of life than the general population.
It might have been expected that veterans whose health was affected by their experience at Porton Down would have been particularly likely to join this support group. While this survey has not identified any striking pattern of specific morbidities among the respondents, it cannot rule out any specific types of ill-health as potentially associated with experience at Porton Down, which may have policy implications. Regarding the implications of this survey for the future analysis of the ongoing cohort study of mortality and cancer incidence, the variety of diagnoses reported by the PDVSG is wide and these results have not allowed a focus on specific types of ill-health.
Among the several conclusions and recommendations made in 1993 by the US Institute of Medicine committee was that ‘... morbidity and mortality studies should be accomplished ... comparing ... cohorts to appropriate control groups in order to resolve some of the remaining questions about the health risks associated with exposure to these agents’ [2]. In the United Kingdom, an important step has been taken with the start of such a cohort study. This includes 20 000 veterans who attended Porton Down between 1939 and 1989 together with 20 000 military controls. As well as studying cause-specific mortality, this study will collect information on other significant conditions contributing to death, and will also study cancer registration. The latter is important given that the chemicals used as chemical warfare agents include several known carcinogens.
Key points
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Conflicts of interest |
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None declared.
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Acknowledgements |
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The researchers are grateful to Ken Earl, Eric Gow and members of the PDVSG for helping to formulate the questions, piloting the questionnaire, mailing out the survey materials and participating in the survey. Without their active support, this survey would not have been possible. We acknowledge invaluable discussions with Valerie Beral at the start of this project. Simon Wessely provided information on surveys of Gulf War veterans and Crispin Jenkinson on quality of life measurement. Charlie Foster provided advice on the management of calls to the survey telephone helpline. Mandy Roberts provided clerical support. We are also grateful for general advice from the Gulf Veterans Illness Unit of the Ministry of Defence (now the Veterans Policy Unit). The study was funded by a grant from the UK Ministry of Defence administered by the MRC (G0200288). In commissioning this study, it was pre-specified that a mailed survey of the PDVSG should be carried out and that the report should be submitted to a peer-reviewed journal. The sponsors had no role in the collection, analysis or interpretation of data or in the writing of the report. Steven Allender was supported by a research grant from the Higher Education Funding Council for England (GMP 229).
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References |
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TopAbstractIntroductionMethodsResultsDiscussionConflicts of interestReferences |
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- Karalliedde L, Wheeler H, Maclehose R, Murray V. Possible immediate and long-term health effects following exposure to chemical warfare agents. Public Health 2000;114:238–248.[CrossRef][Web of Science][Medline]
- Pechura CM, Rall DP, eds. Veterans at Risk: The Health Effects of Mustard Gas and Lewisite. Washington, DC: National Academy Press, 1993.
- Lee HA, Gabriel R, Bale AJ, Welch D. Clinical findings in 111 ex-Porton Down volunteers. J R Army Med Corps 2004;150:14–19.
- Walters SJ, Munro JF, Brazier JE. Using the SF-36 with older adults: a cross-sectional community-based survey. Age Ageing 2001;30:337–343.
[Abstract/Free Full Text] - Ware JE, Kosinski M, Dewey JE. How to Score Version 2 of the SF-36 Health Survey. Lincoln, RI: Quality Metric Corporation, 2000.
- Unwin C, Blatchley N, Coker W et al. Health of UK servicemen who served in the Persian Gulf War. Lancet 1999;353:169–178.[CrossRef][Web of Science][Medline]
- Chalder T, Berelowitz G, Pawlikowska T et al. The development of a fatigue scale. J Psychosom Res 1993;37:147–153.[CrossRef][Web of Science][Medline]
- Deale A, Husain K, Chalder T, Wesseley S. Long-term outcome of cognitive behaviour therapy versus relaxation therapy for chronic fatigue syndrome: a 5-year follow-up study. Am J Psychiatry 2001;158:2038–2042.
[Abstract/Free Full Text] - Maconochie N, Doyle P, Davies G et al. The study of reproductive outcome and the health of offspring of UK veterans of the Gulf war: methods and description of the study population. BMC Public Health 2003;3:4.[CrossRef][Medline]
- Medical Research Council. Questionnaire on Respiratory Symptoms. London: MRC, 1986.
- World Health Organization. International Statistical Classification of Diseases and Related Health Problems (10th Revision). Geneva: World Health Organization, 1992.
- Bowling A, Bond M, Jenkinson C, Lampin DL. Short form 36 (SF-36) health survey questionnaire: which normative data should be used? Comparisons between the norms provided by the Omnibus Survey in Britain, The Health Survey for England and the Oxford Healthy Life Survey. J Public Health Med 1999;21:255–270.
[Abstract/Free Full Text] - Jenkinson C, Stewart-Brown S, Petersen S, Paice C. Assessment of the SF-36 version 2 in the United Kingdom. J Epidemiol Community Health 1999;53:46–50.[Abstract]
- Office for National Statistics. Birth Statistics FM1 No 32. London: Office for National Statistics, 2003.
- Doyle P, Roman E, Maconochie N, Davies G, Smith PG, Beral V. Primary infertility in nuclear industry employees: a report from the Nuclear Industry Family Study. Occup Environ Med 2001;58:535–539.
[Abstract/Free Full Text] - Pawlikowska T, Chalder T, Hirsch SR, Wallace P, Wright DJM, Wessely SC. Population based study of fatigue and psychological distress. Br Med J 1994;3008:763–766.
- Cherry N, Creed F, Silman A et al. Health and exposures of United Kingdom Gulf War veterans. Part 1: the pattern and extent of ill health. Occup Environ Med 2001;58:291–298.
[Abstract/Free Full Text] - Hotopf M, Wessely S. Can epidemiology clear the fog of war? Lessons from the 1990–91 Gulf War. Int J Epidemiol 2005;34:791–800.
[Abstract/Free Full Text] - Busuttil W. Presentations and management of post traumatic stress disorder and the elderly: a need for investigation. Int J Geriatr Psychiatry 2004;19:429–439.[CrossRef][Web of Science][Medline]
- http://www.publications.parliament.uk/pa/cm200405/cmhansrd/cm050222/halltext/50222h03.htm#50222h03_head0
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