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9 Khan J, Wei JS, Ringner M, et al. 11 Goidin D, Mamessier A, Staquet MJ, et al. polymerase chain reaction assays. JMol Classification and diagnostic prediction of Ribosomal 18S RNA prevails over Endocrinol 2000;25:169–93. cancers using gene expression profiling and glyceraldehyde-3-phosphate dehydrogenase 13 Schmittgen TD, Zakrajsek BA. Effect of artificial neural networks. Nature Med and beta-actin genes as internal standard for experimental treatment on housekeeping gene 2001;7:673–9. quantitative comparison of mRNA levels in expression: validation by real-time, 10 Glare EM, Divjak M, Bailey MJ, et al. β-Actin invasive and noninvasive human melanoma quantitative RT-PCR. J Biochem Biophys and GAPDH housekeeping gene expression in cell subpopulations. Anal Biochem Methods 2000;46:69–81. asthmatic airways is variable and not suitable 2001;295:17–21. 14 Wang E, Miller LD, Ohnmacht GA, et al. for normalising mRNA levels. Thorax 12 Bustin SA. Absolute quantification of mRNA High-fidelity mRNA amplification for gene 2002;57:765–70. using real-time reverse transcription profiling. Nature Biotechnol 2000;18:457–9.

Cystic fibrosis adult CF populations are still largely ...... unknown. What is known is that individuals at the end stages of the condition are even more vulnerable to psychologi- Psychological consequences of cal problems resulting from increasing “loss” of, for example, mobility, au- segregation resulting from chronic tonomy, relationships, and quality of life. Furthermore, the disease becomes more Burkholderia cepacia infection in “visible” and intrusive and less predict- able, which can give rise to feelings of adults with CF anhedonia, helplessness, fear, and anxiety.13 With this in mind, while much A J A Duff has been published on the physical ben- ...... efits of segregating patients with CF, almost no information exists on the Patients with CF segregated because of Burkholderia cepacia psychosocial consequences of such prac- infection must be helped to assemble coherent structures for tices. social relationships if they are to adapt successfully to such It is well recognised that being “hospitalised” has a negative effect on psycho- management. logical functioning.14–17 Isolation in hospital has the potential to have even n 1997 the median life expectancy for frequent contact with another B cepacia greater negative effects on emotional 56 individuals with cystic fibrosis (CF) positive CF patient. well being. One study reported that over Iwas 31.5 years in the UK1 and it has In most UK adult CF centres it is now 42% of patients identified negative emo- been suggested that those born today accepted practice to separate patients who tions associated with isolation.18 Such can expect to live well into their mid are infected with B cepacia from those who patients have significantly higher rates 2 40s. However, there is huge variability in are not. Guidelines on cross infection of anxiety and depression and signifi- the physical condition of adults with CF. effectively mean managing infected pa- cantly lower levels of self-esteem and While malabsorption, osteoporosis, tients in isolation, away from the main CF control.19 Evidence from other patient wards, but even this may not be sufficient diabetes, and liver failure all contribute groups who have experienced segregated to prevent the spread of the organism. to incapacity, lung disease is the main and isolating medical treatments (such Contemporary advice to patients extends cause of morbidity and mortality. Some as those with cancer, leprosy or HIV segregation to outside hospitals— patients have near normal levels of lung positive patients) suggests that the function. Others, however, are debili- directing them not to attend CF meetings, experience is confining, depressing, bor- tated by dyspnoea and dependent on not to have any physical contact with B ing and lonely, leading to feelings of oxygen. cepacia negative CF patients, and to adopt 7 clinical depression, despair and Lung disease in CF is primarily due to impeccable hygienic behaviour. Although abandonment.20 Indeed, loneliness, mo- the consequences of infection. In the difficult, where this has been done fewer notony and stigmatisation have been first decade of life Staphylococcus aureus patients with CF become infected with B and Haemophilus influenzae are the pre- cepacia for the first time8 and some reported as frequently as potential posi- dominant organisms in sputum, while in clinicians now report a decrease in the tive aspects of segregation such as overall number of cases. However, as a having time for reflection, which some older children and adults Pseudomonas 21 aeruginosa is most common.3 In the past result of the emergence of cross infection patients find very therapeutic. In adult 15 years some CF centres have had in CF patients by a multiresistant strain of men diagnosed as HIV positive, social epidemics of Burkholderia cepacia infec- P aeruginosa, some clinicians now advocate isolation is thought to be compounded tion. Although patients respond to segregating patients according to their by ruptures in relationships and the 22 standard antibiotic treatment,4 most be- microbiological status.910 Others have breakdown of social support networks. come chronically infected and experi- questioned the wisdom of adopting such In addition, while there may be a high ence a more rapid decline in lung practice, highlighting—in addition to desire among patients to receive infor- function. The reasons for this are still clinical reasons—the potential emotional mation and reassurance, being segre- unclear, although recent microbiological impact on patients and their families.11 gated appears to inhibit communica- findings suggest that there are different tion.18 23 Colonisation with B cepacia has pathogenic potentials of various B cepacia PSYCHOLOGICAL resulted in exclusion from CF confer- genomovars.5 In the UK prevalence rates CONSEQUENCES OF ences and support groups, leading to the vary between centres but increase sig- SEGREGATION loss of mutual support systems typically nificantly if spread from patient to While it is known that adults with available to adults with CF24 and, conse- patient is not prevented. In this respect, chronic illness are at a greater risk of quently, to further increases in feelings B cepacia differs from other bacteria in developing psychological problems,12 of isolation, anger, and of being a that it is usually caught through close or prevalence rates of such difficulties in “microbial leper”.25

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INTERVENTION STRATEGIES (CDSMPs)26 27 are small highly struc- their medical management and support Patients must attempt to reassemble tured groups led by volunteers, all of networks and to shape future manage- coherent structures for social relation- whom have the condition, and focus on ment accordingly. ships if they are to adapt successfully to cognitive symptom management, exer- their new status. The most significant cise and nutrition, problem solving, and factors identified as being able to im- Correspondence to: Dr A J A Duff, Department communication with medical profes- of Clinical & Health Psychology & Regional CF prove the experience for the patient are sionals. In the UK the government is Unit, St James’s University Hospital, Leeds ones which enhance human interaction. now actively supporting CDSMPs with LS9 7TF, UK; [email protected] While there is no doubt that the world national pilot schemes taking place over Thorax 2002;57:756–758 wide web has become the greatest source the next 3 years.28 Several CDSMPs of information and opened up a stream already exist—for example, for patients of new possibilities for facilitating com- with arthritis and multiple sclerosis— munication between individuals with and outcome studies have shown signifi- REFERENCES CF, there are inherent pitfalls if such cant reductions in the severity of symp- 1 Dodge JA, Morrison S, Lewis PA, et al. Cystic sources and processes are left un- fibrosis in the United Kingdom, 1968–1995: toms and pain, and gains in quality of incidence, population and survival. Arch Dis checked. Web sites and chat rooms can, life and resourcefulness. These studies Child 1997;77:493–6. unfortunately, also be a fountainhead of also indicate the potential for further 2 Frederiksen B, Lanng S, Koch C, et al. disinformation, rumour and “folklore”. Improved survival in the Danish centre treated improving communication and doctor- cystic fibrosis patients: results of aggressive As there are few resources currently 29 patient relationships. Although diffi- treatment. Pediatr Pulmonol 1996;21:153–8. available to develop such sites effectively, cult, it may be possible for small groups 3 Ramsay BW. Management of pulmonary more immediate strategies must be disease in patients with cystic fibrosis. N Engl of patients with CF who are segregated found “beyond the Internet”. JMed1996;335:179–88. because of B cepacia and who have been 4 Peckham D, Crouch S, Humphreys H, . There are clear implications for how et al genomovar typed to form CDSMPs. Effect of antibiotic treatment on inflammatory staff and family members can assist in markers and lung function in cystic fibrosis ameliorating the psychosocial effects of Where microbiological status and patients with Pseudomonas cepacia. Thorax isolation in hospital and social genomovar type are unknown, such 1994;49:803–7. 20 groups could still take place using 5 Govan JWR. The Burkholderia cepacia segregation. Nursing staff and social complex: an update on epidemiology and workers, in particular, have key skills in videoconferencing technology. host/pathogen interactions. Paper presented working with patients in giving infor- at the 24th European Cystic Fibrosis mation or liaison capacities and have Conference. Vienna, Austria, 6–9 June 2001. CONCLUSIONS 6 Li Puma JJ, Dansen SE, Neilson DW, et al. critical roles to play in the assessment of Person to person transmission of Pseudomonas mood states and the provision of It is well recognised that being “hospital- cepacia between patients with cystic fibrosis. strategies aimed at improving the ised” has a negative effect on psychologi- Lancet 1990;336:1094–6. 21 cal functioning. Segregation and isolation 7 UK CF Trust Infection Control Group. experience. While psychological thera- Burkholderia cepacia. Bromley, Kent: The CF pists have the necessary skills to provide may have even greater negative effects on Trust, 1999. psychotherapy on an individual basis, emotional well being. Such patients have 8 Smith DC, Gumery L, Smith EC, et al. such “reactive” strategies will only ever been shown to have significantly higher Epidemic of Pseudomonas cepacia in an adult cystic fibrosis unit: evidence of person to meet the needs of the few and such serv- rates of anxiety and depression and persons transmission. J Clin Microbiol ices tend to be under-resourced. It significantly lower levels of self-esteem 1993;31:3017–22. remains important to screen regularly and control. They must reassemble coher- 9 Jones AM, Govan JRW, Doherty CJ, et al. for psychopathology, either by conven- Spread of a multiresistant strain of ent structures for social relationships if Pseudomonas aeruginosa in an adult cystic tional or psychometric assessment, par- they are to adapt successfully to their new fibrosis clinic. Lancet 2001;358:557–8. ticularly when it is known that the status. While the Internet offers improve- 10 McCallum SJ, Corkhill J, Gallacher M, et al. patient has had previous psychological Superinfection with a transmissible strain of ments in communication and infor- Pseudomonas aeruginosa in adults with cystic problems. Where indicated, psycho- mation dissemination, facilities for people fibrosis chronically colonised by P aeruginosa. therapy must be sought. Psychological with CF are generally unavailable and Lancet 2001;358:558–60. therapists can also adopt a more con- poorly monitored. More immediate solu- 11 Geddes D. Of isolates and isolation: sultative role and help other team mem- Pseudomonas aeruginosa in adults with cystic tions may rely on key members of CF fibrosis. Lancet 2001;358:522–3. bers to build on their skills—counselling teams, particularly nursing staff and 12 Blair C, Cull A, Freeman CP. Psychosocial or otherwise—and support them in sup- social workers, facilitating patients’ self- functioning of young adults with cystic fibrosis and their families. Thorax 1994;49:798–802. porting individuals who are segregated control and empowerment and minimis- because of B cepacia infection. This would 13 Duncan-Skingle F, Pankhurst FJ. Adults. In: ing boredom and rumination. Individual Bluebond-Langner M, Lask B, Angst D, eds. not necessarily involve spending more psychotherapy will benefit only the few Psychosocial aspects of cystic fibrosis. London: time with people. On the contrary, it Arnold, 2001:161–71. patients whose emotional distress is iden- seems that the principal aim must be to 14 Thompson DR. A randomised controlled trial tified and who are able to access direct of inpatient nursing support for first time empower patients, facilitate their self- psychological support. While such serv- myocardial infarction patients and their control, and to minimise boredom and partners: effects on anxiety and depression. J rumination. Liaison with other profes- ices remain in relative short supply, Adv Nurs 1989;14:291–7. sional groups—such as occupational screening remains imperative. Psycho- 15 Elliot D. Measuring patient anxiety in logical therapists working in CF teams coronary care. Aust Crit Care 1992;5:12–6. therapists, who may instigate activity 16 Teasdale K. The nurse’s role in anxiety scheduling programmes—or agencies— may have a more consultative role to play management. Prof Nurse 1995;10:509–12. such as charities and action groups who in helping establish proactive interven- 17 Shuldham CM, Cunningham G, Hiscock M, tion schemes. Specific nurse-led et al. Assessment of anxiety in hospitalised may provide, among other things, patients. J Adv Nurs 1995;22:87–93. befriending—will be of great benefit to strategies, improvements in communica- 18 Ward D. Infection control: reducing the patients. Other suggestions include im- tion, visiting programmes and CDSMPs psychological effects of isolation. Br J Nurs proving the frequency and quality of should all be explored further. 2000;9:162–70. With calls for segregation practices to 19 Gammon J. Analysis of the stressful effects of written information and staff-patient hospitalisation and source isolation on coping communication and establishing regular be extended beyond patients with CF and psychological constructs. Int J Nurs Pract visiting programmes.18 infected with B cepacia, there is an 1998;4:84–96. Patients themselves could also have obligation to learn from the experiences 20 Kelly-Rossini L, Perlman DC, Mason DJ. The experience of respiratory isolation for important roles to play. Chronic dis- of this group of patients who have HIV-infected persons with tuberculosis. J Assoc ease self-management programmes already experienced radical changes to Nurses AIDS Care 1996;7:29–36.

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21 Oldman T. Isolated cases. Nurs Times 25 Govan JRW, Brown PH, Maddison J. reducing health care costs. Arthritis Rheum 1998;94:67–70. Evidence for transmission of Pseudomonas 1993;36:439–46. 22 Cherry K, Smith DH. Sometimes I cry. The cepacia by social contact in cystic fibrosis. 28 Department of Health. The expert patient: a experience of loneliness for men with AIDS. Lancet 1993;342:15–9. new approach to chronic disease Health Comm 1993;5:181–208. 26 Lorig K, Holman HR. Long-term outcomes of management for the 21st century. London: 23 Campbell T. Feelings of oncology patients an arthritis self-management study: effects of Department of Health Expert Patients Task about being nursed in protective isolation as a reinforcement efforts. Soc Sci Med Force, 2001 (www.doh.gov.uk/ consequence of cancer chemotherapy 1989;3:217–26. healthinequalities). treatment. J Adv Nurs 1999;30:439–47. 27 Lorig K, Mazonson PD, Holman HR. Evidence 29 Barlow JH. Self management literature 24 Waters S, Smith EG. Pseudomonas cepacia suggesting that health education for review. Psychological Research Centre, in cystic fibrosis: transmissibility and its self-management in patients with chronic University of Coventry (for the Department of implications. Lancet 1993;342:3–4. arthritis has sustained health benefits while Health Expert Patients Task Force), 2000.

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