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A survey of tuberculosis clinic provision in England and Wales
ARTICLE IN PRESS Public Health (2008) 122, 602–612
www.elsevierhealth.com/journals/pubh
Original Research
A survey of tuberculosis clinic provision in England and Wales Sooria Balasegarama,, Robert Granta, Peter Ormerodb, Jonathan Mantc, John Haywardd, Derek Lowea, Alistair Storye a
National Collaborating Centre for Chronic Conditions, Royal College of Physicians, UK East Lancashire NHS Trust, UK c University of Birmingham, Birmingham, UK d Newham Primary Care Trust, London, UK e Centre for Infections, Health Protection Agency, UK b
Received 1 March 2007; received in revised form 27 July 2007; accepted 24 September 2007 Available online 28 January 2008
KEYWORDS Tuberculosis; Health service provision
Summary Background: This paper presents the methods and findings of a survey of current service configuration in tuberculosis screening, treatment and prevention in England and Wales, which was conducted as part of the development of the National Institute for Health and Clinical Excellence guidelines on tuberculosis for the country. Methods: A random sample of health protection units (HPUs) was surveyed (stratified geographically) in England. For Wales, National Health Service boundaries were used. There was a 100% sample of HPUs (33 clinics) in London and a 50% sample (81 clinics) outside London. The survey was completed by nurses in tuberculosis clinics. The questionnaire asked for details of caseload in terms of active disease (notified cases) and latent infection (screening and chemoprophylaxis), and the different types of specialist tuberculosis services offered. Results: Completed surveys were obtained from 67 of 81 clinics outside London and all 33 clinics in London. An association was found between the number of notifications and personnel, in line with previous British Thoracic Society guidelines. Higher notification areas, especially in London, provide additional specialist services such as human immunodeficiency virus/tuberculosis clinics and specialist paediatric clinics. Clinics in London also reported higher usage of incentives, directly observed therapy (DOT) and free prescriptions. Low notification areas outside London tend to see more patients at home for contact tracing and treatment review. However, there is considerable variation in the use of DOT and chemoprophylaxis that is not entirely explained by differences in caseload. Conclusions: The survey showed that service configuration was organized in different ways in both high and low incidence areas. There is a need to share
Corresponding author.
E-mail address: [email protected] (S. Balasegaram). 0033-3506/$ - see front matter & 2007 The Royal Institute of Public Health. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.puhe.2007.09.015
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good practice and explore ways to configure services effectively in line with local needs. & 2007 The Royal Institute of Public Health. Published by Elsevier Ltd. All rights reserved.
Introduction In 2004, the National Collaborating Centre for Chronic Conditions (NCC-CC), based at the Royal College of Physicians of London, was commissioned to provide new national guidelines for tuberculosis control and treatment by the National Institute for Health and Clinical Excellence.1 As part of this remit, the multidisciplinary Guideline Development Group for Tuberculosis at the NCC-CC surveyed current practice to inform recommendations on service configuration.1 Tuberculosis services are provided by the statefunded National Health Service (NHS). The Health Protection Agency is an independent body in England with a responsibility to protect public health including infectious disease.2 It operates local health protection units (HPUs), whose geographical boundaries are often coterminous with local NHS units. HPUs help to co-ordinate relevant NHS activities including detection, treatment, prevention of tuberculosis and local surveillance.2 Such activities are often devolved across local NHS care providers, whose clinics are at varying levels of specialization and function. In some areas, the HPUs themselves house nurses and health visitors working in public health control of tuberculosis, including: risk assessment of the index case; tracing contacts; screening contacts and new entrants; and vaccination. Treatment activities are then based at the NHS clinics. This survey sought to describe these differences in local service configuration with respect to epidemiology, but it was not designed to assess the quality of service provision.
Methods In England, the sampling unit was HPUs in order to capture all the local providers. In Wales, NHS boundaries were used. Within each HPU chosen, the survey was sent to nurses/health visitors in all tuberculosis clinics. Clinics were targeted via an existing database of tuberculosis nurses and other personnel performing contact tracing. At least one person from each clinic and the HPU was contacted prior to distribution to verify the personnel and contact details for their area. When distributing
the survey to the clinics, a list of all other personnel in the HPU was included to ensure completeness of coverage. For England, HPUs were selected at random within regional strata to capture the geographical spread of incidence. In Wales, sampling units were stratified by regional and NHS boundaries. In London, there was 100% sampling of the five HPUs (33 clinics), and the survey was distributed by the London Tuberculosis Nurses Network so that 100% coverage of the HPUs comprising the London area could be obtained. Outside London, there was 50% random sampling of HPUs (18 of 37). The survey coordinator (SB) sent the questionnaires directly to all clinic contacts within the selected HPUs. A copy of the survey and personnel list was sent to a consultant in communicable disease control in each HPU in the survey in order to check coverage. The questionnaire was based on a previous questionnaire on service provision circulated among the London Tuberculosis Nurses Network. The questions were chosen to reflect the areas included in the guideline. A draft questionnaire was circulated among the Guideline Development Group, the Health Protection Agency’s Centre for Infection and Local and Regional Services; the latter representing the HPUs.2 The revised questionnaire was piloted with two tuberculosis nurses. The survey was sent out to respondents by e-mail or post in July 2004, and followed-up with telephone calls 6 and 9 weeks after distribution, at which stage HPUs were enlisted to chase non-responders locally.
Statistical analysis Questionnaires were anonymized by the survey coordinator (SB), who alone held the database of clinic and HPU identifiers. The data were analysed at the NCC-CC (by SB, RG and DL) using SPSS Version 11.5, providing results at clinic level and at HPU level. Clinics were asked to estimate the number of personnel and the proportion of time spent on tuberculosis-related work. Where clinics were unable to estimate this because it was very low but not zero, a value of ‘less than 0.1 whole-time equivalents (WTEs)’ was assigned. As not all questions were applicable to all respondents, the denominator varied between questions.
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Results London questionnaires were collected by the London Tuberculosis Nurses’ Clinic profile survey, with a 100% response rate (33/33 clinics) from the five HPUs. Most (n ¼ 28) responders were specialist nurses or health visitors, and three were hospital respiratory nurses. Outside London, 72 questionnaires were received and five were eliminated as duplicates (response rate 67/81 ¼ 83%). In two HPUs out of 18 sampled outside London, responses were insufficient for aggregated analysis. In one HPU, three chest physicians were asked by the HPU to complete the survey when the tuberculosis nurses at their clinics did not reply. The responses from clinics from this HPU were insufficient to allow HPU analysis, although they were used in the clinic analysis. In the other HPU, there were no responses from the two clinics surveyed. The other 16 HPUs outside London provided sufficient responses. Within these, the response from clinics was 100% (nine clinics), 80–99% (four clinics), 60–79% (two clinics) and 50% (one clinic). The 67 responses comprised 13 HPU-based teams,
nine community generalists, nine community specialist tuberculosis nurses/health visitors, 19 hospital generalist respiratory nurses, 10 specialist nurses/health visitors and seven doctors (two community based).
Analysis by HPU area Fig. 1 shows that personnel in WTEs correlates most clearly with numbers of notified cases (Spearman’s rho ¼ 0.852, Po0.001). Across HPUs, the WTE rate was approximately one per 40 notifications, which is an indication that staffing is in line with previous guidelines.3,4 However, workload may not be reflected by notification rate alone, as it does not account for the caseload of screening new entrants and contacts of cases (Fig. 2). This screening caseload varied markedly between HPUs and correlates with WTE specialist personnel (Spearman’s rho ¼ 0.635, P ¼ 0.002), notifications (Spearman’s rho ¼ 0.725, Po0.001) and chemoprophylaxis (Spearman’s rho ¼ 0.857, Po0.001). The reported number of negative pressure rooms available for patients with tuberculosis was much
1000 900 800
No of notified cases
700 600 500 400 300 200 Location: Elsewhere London
100 0 0
2
4
6
8 10 12 14 16 18 WTE nurses or health visitors
20
22
24
Figure 1 Number of nurses and health visitors (whole-time equivalents) by notified cases and place. Each dot represents one health protection unit area.
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5,000
No of contacts and new entrants screened
4,500 4,000 3,500 3,000 2,500 2,000 1,500 Location: Elsewhere London
1,000 500 0 0
2
4
6
8 10 12 14 16 18 WTE nurses or health visitors
20
22
24
Figure 2 Total new entrants and contacts of cases screened by personnel and place. Each dot represents one health protection unit area.
higher than expected despite contacting respondents specifically to confirm this.
Analysis by clinic Table 1 lists the survey results by clinic and location (London/outside London). For most of the questions in the survey, the provision of a particular service does not appear to be associated with increased workload as measured by notifications or screening caseload (contacts of cases and new entrants to the country), or with higher staffing levels. Over half of the service providers in the survey had a dedicated tuberculosis clinic, often in areas with a higher caseload of active tuberculosis (shown by number of notifications), but this was not reflected in the screening caseload (number of new entrants and case contacts screened). Screening was sometimes reported as being carried out in a separate dedicated clinic. Outside London, 18 of 59 (31%) tuberculosis service providers had nurse-led follow-up clinics that review patients undergoing treatment. The
majority of these (n ¼ 15) conducted follow-up mainly or wholly at the patient’s home. In London, 55% of tuberculosis service providers had nurse-led follow-up clinics, but none of these visited patients at home. In London, 10 of 33 (30%) service providers had a specialist human immunodeficiency virus (HIV)/ tuberculosis clinic, although five other clinics reported access to these specialist clinics. Outside London, five of 60 (8%) service providers reported a joint clinic; these clinics tended to be in higher notification areas. Children were either seen by specialist tuberculosis doctors, respiratory doctors or paediatric doctors. Generalist paediatric doctors may liaise with tuberculosis nurses and, in one case, ran a service for BCG vaccination, chemoprophylaxis and treatment with tuberculosis nurse input. The number and proportion of service providers running paediatric clinics with specialist tuberculosis nurse input was 11 (17%) outside London and 21 (64%) in London. Four other clinics, one outside London and three in London, had access to these clinics (Table 1).
ARTICLE IN PRESS 606 Table 1
S. Balasegaram et al. Summary results per clinic.
Presence ofy n
No. of notifications
No. of people screeneda
Nursing staff WTE
Median IQRb
Median IQR
Median IQR
Dedicated tuberculosis clinic? London Yes 21 (64%) 126 No 12 76 Elsewhere Yes 34 (53%) 23 No 28 13
Range
Rarec–5.8 0.6–3.4
32–240 514 28–135 533
296–1286 145–2600 3.0 252–910 227–928 2.0
1.5–4.5 1.5–2
9–40 9–41
1–290 3–100
68–804 84–772
0.2–1.9 0–5.6 Rare–1.3 Rare–2.6
44–147 74–179
28–240 721 43–237 484
373–1256 277–2600 2.0 227–891 145–1297 2.0
1–3.7 2–3.4
9–42 9–39
2–290 1–92
82–865 78–637
0.2–1.8 0–5.6 Rare–1.4 Rare–2.6
76–145 52–181
32–171 524 28–240 484
402–1219 247–1275 2.5 252–1113 145–2600 2.0
2.0–3.5 1.0–3.6
9–60 9–33
3–290 1–137
143–948 62–642
0.5–2.0 Rare–5.6 Rare–1.2 0–2.6
73–176 42–135
32–240 509 28–149 514
321–1281 145–2600 2.0 252–910 227–928 2.0
24–94 9–34
1–290 0–137
113–1094 22–1716 63–741 30–2400
73–149
28–240 352
233–607
129–2000 2.0
1.7–3.7
8–41 9–30
0–290 8–42
37–253 21–135
9–3068 3–664
Rare–1.5 0–5.6 Rare–0.8 Rare–2.0
17 (52%) 120 16 101
60–194 62–137
28–240 672 42–171 514
269–1623 247–2600 2.0 286–1064 145–1275 2.0
1.3–4.0 1.2–3.0
53 (83%) 18 11 11
9–40 8–24
0–290 3–137
77–788 58–784
22–2400 35–1000
0.7 Rare
Rare–1.5 0–5.6 Rare–1.0 Rare–2.0
18 (56%) 81 14 120
45–147 83–169
28–237 204 42–240 1
124–306 0–328
3–697 0–600
2.0 2.0
1.4–3.8 1.8–3.7
50 (82%) 24 11 10
9–43 6–14
0–290 4–92
40–522 0–203
0–1500 0–400
0.5 0.9
Rare–1.5 0–5.6 0.6–1.8 Rare–2.5
Specialist tuberculosis/HIV clinic? London Yes 10 (30%) 120 No 23 102 Elsewhere Yes 16 (27%) 31 No 44 16 Paediatric tuberculosis clinic? London Yes 24 (73%) 102 No 9 120 Elsewhere Yes 12 (19%) 31 No 52 15 Contact tracing clinic? London Yes 30 (91%) 115 No 3 Elsewhere Yes 45 (70%) 17 No 19 12
Specialist new London Yes No Elsewhere Yes No
Range
77–184 39–114
Nurse-led follow-up clinic? London Yes 18 (55%) 102 No 15 123 Elsewhere Yes 18 (31%) 24 No 41 13
BCG clinic? London Yes No Elsewhere Yes No
Range
229 308
166 300
749 137
678 163
125 52
314 91
22–1716 30–2400
30–2400 22–1193
51–1716 22–2400
0.9 0.5
0.8 0.2
1.0 0.5
1.3 0.6
0.6 Rare
1.8–4.0 1.0–3.0
0.6–5.0 Rare–5.8
1.0–5.0 Rare–5.8
Rare–5.8 0.6–3.4
0.4–2.0 Rare–5.6 Rare–1.0 0–2.5
0.6–5.8
0.6–5.8 Rare–5.0
entrants clinic?
148 2
0.6–5.8 1.0–5.0
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Table 1 (continued ) Presence ofy n
No. of notifications
No. of people screeneda
Nursing staff WTE
Median IQRb
Median IQR
Median IQR
Screening high-risk groups? London Yes 13 (39%) 101 No 20 120 Elsewhere Yes 15 (27%) 30 No 41 16 Prison care (excluding visits)? London Yes 7 (29%) 125 No 17 73 Elsewhere Yes 13 (33%) 25 No 26 17 Prison visits? London Yes No Elsewhere Yes No
8 (33%) 16
Range
Range
62–129 60–181
32–207 499 28–240 533
373–1205 227–2600 2.0 247–1200 145–1275 2.0
1.3–3.0 1.2–4.0
12–60 8–37
8–94 1–290
86–927 62–812
Rare–1.8 Rare–2.0 0.2–1.7 0–5.6
510 166
63–1716 22–2400
1.0 0.6
1.0–5.0 Rare–5.8
101–149 76–207 346 42–128 28–181 688
237–906 227–1297 3.0 321–1132 145–2600 2.0
2.0–3.0 1.0–2.7
15–40 7–36
3–290 1–137
62–755 51–632
Rare–2.0 0–5.6 0.2–1.5 0–2.6
95–188 43–121
76–207 514 28–141 469
346–1297 346–1297 2.5 242–996 145–2600 2.0
2.0–3.8 1.0–2.8
10–37 4–41
5–290 1–137
63–704 51–804
0.2–2.0 0–5.6 Rare–1.4 0–2.6
68–143
28–237 514
277–1200 145–2600 2.0
1.7–3.4
9–43 8–15
2–290 1–100
85–839 28–683
Rare–1.5 0–5.6 Rare–1.9 Rare–2.5
115 63
76–149 42–129
28–240 524 32–237
294–1256 227–2600 2.0 1.0
2.0–3.7 1.0–2.3
17 17
8–58 9–42
1–137 2–290
126–966 72–846
0.2–1.6 0–2.0 Rare–1.8 0–5.6
60–149 58–169
28–240 533 43–237 246
365–1238 227–2600 2.0 145–346 145–346 2.0
1.0–3.6 1.8–3.7
9–44 6–30
3–290 1–137
92–921 45–332
Rare–1.8 0–5.6 Rare–0.9 0–2.6
141 76
15 (38%) 21 24 19
Directly observed therapy? London Yes 26 (84%) 109 No 5 Elsewhere Yes 47 (80%) 24 No 12 12 Free prescriptions? London Yes 22 (69%) No 10d Elsewhere Yes 9 (16%) No 47
Range
Outreach service? London Yes 27 (82%) 120 No 6 76 Elsewhere Yes 40 (67%) 15 No 20 17
Measures to improve compliance? London Yes 32 (97%) 115 73–149 No 1 Elsewhere Yes 45 (73%) 23 9–45 No 17 9 4–24
382 291
395 166
368 85
536 160
632 152
51–812 22–1716
50–812 22–1716
30–1716 22–2400
22–1193 30–2400
35–2400 22–1052
0.9 0.9
1.0 0.6
0.8 0.5
0.5 0.6
0.8 0.2
2.0–5.0 Rare–5.0
1.0–5.0 Rare–5.0
Rare–5.8
0.6–5.0 Rare–5.8
Rare–5.0 1.0–5.8
28–240 514
277–1200 145–2600 2.0
1.6–3.5
3–290 1–92
90–876 35–274
0.2–1.8 Rare–5.6 Rare–1.0 0–2.6
432 68
30–2400 22–1000
0.8 0.2
Rare–5.8
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Table 1 (continued ) Presence ofy n
No. of notifications
No. of people screeneda
Nursing staff WTE
Median IQRb
Median IQR
Median IQR
Incentives for attending clinics? London Yes 20 (65%) 129 No 47 11d Elsewhere Yes 11 (19%) 25 No 47 15
Range
Range
Range
95–174 33–85
43–240 499 28–102
272–1256 145–2600 3.0 1.5
2.0–4.8 1.0–2.0
10–83 9–41
8–137 1–290
100–937 56–684
Rare–2.0 Rare–2.0 Rare–1.5 0–5.6
812 166
82–1000 22–2400
0.8 0.5
1.0–5.8 Rare–2.0
Where there are five or fewer valid data, these statistics may be misleading and are therefore omitted. For contact tracing clinics, this shows numbers of contacts only. For new entrant clinics, this shows new entrants only. For all other categories, these two are combined. b IQR, interquartile range (the middle half of the data). The numbers shown are the first and third quartiles. c Rare’ is defined here as less than 0.15 whole-time equivalents (WTE), or a general respiratory nurse who spends a small unquantified proportion of time on tuberculosis. d Missing data made it impossible to derive meaningful statistics on the numbers of people screened in this row. a
300
200
150
100
Location: Elsewhere London
50
No of people receiving chemoprophylaxis
250
No of notified cases
Location: Elsewhere London
200
160
120
80
40
0
0 0
400
800
1,200 1,600 2,000 2,400 2,800 3,200 No of contacts screened
0
400
800
1,200 1,600 2,000 2,400 2,800 3,200 No of contacts screened
Figure 3 (a) Contacts of cases screened by notifications and place and (b) contacts of cases screened and chemoprophylaxis by place. Each dot represents one clinic.
In 22 (34%) clinics outside London and three (9%) clinics in London, cases were seen in paediatric clinics without tuberculosis nurse input. In 27 clinics outside London and six clinics in London, cases were seen by a respiratory physician or the professional was not recorded. Outside London, 10 (16%) service providers saw patients at home for contact tracing. However, in London, service providers only visited patients at
home in exceptional cases. Fig. 3(a and b) illustrates the variation in the range of contacts screened with numbers notified and with the number of people receiving chemoprophylaxis. New entrants (arrivals from areas of high incidence) are advised to have screening for tuberculosis, and BCG or treatment if required.3 Screening was provided via a dedicated new entrants service, often a primary-care-based holistic
ARTICLE IN PRESS A survey of tuberculosis clinic provision in England and Wales new entrants programme, or in general tuberculosis clinics. The survey did not cover the newer arrangements in fast-track induction centres for refugees, which are organized by the Home Office. Within London, 18 (56%) service providers had a dedicated new entrants clinic. Outside London, 27 (44%) service providers had a dedicated new entrants clinic and 21 (35%) saw new entrants in a general clinic, usually the BCG clinic. For two (3%) local services, new entrants were seen at home. The remaining 11 respondents had no specific screening programme for new entrants. The median number of people screened was higher in clinics offering new entrant screening outside London, but there was considerable overlap. A minority of clinics ran high-risk screening for certain groups such as drug users, the homeless and alcoholics (see Table 1). Care of prisoners was similar both in and outside London; approximately one-third of tuberculosis nurses with prisons in the area went on prison visits. Approximately four-fifths of all clinics used directly observed therapy (DOT), and outside London, this was associated with high notification
609
clinics. However, the proportion of cases on DOT varied, differing in and out of London, possibly reflecting differences in case-mix (Fig. 4). Only nine of 47 (16%) clinics outside London were able to provide free prescriptions of anti-tuberculous medication, compared with 22 of 32 (69%) clinics in London. This may be related to the higher number of notifications in London. A majority of clinics carried out some form of outreach; most stated patients’ homes, but other places stated were nursing and residential homes, detox shelters and other drug treatment venues, homeless shelters, clubs and other community centres, and places of work. Outreach work was related to clinics with a higher median number of notifications (London) and people screened, reflecting areas of higher tuberculosis incidence. Thirty-two of 33 (97%) clinics in London and 45 of 62 (73%) clinics outside London reported using measures to improve adherence. Most clinics reported using urine assays, examining urine colour, using tablet counts, and using controlled dosage systems. Other respondents (outside London) also asked patients to sign care plans, gave regular
0.7
Location: Elsewhere London
Ratio DOT cases : notified cases
0.6
0.5
0.4
0.3
0.2
0.1
0.0 0
50
100
150 200 No of notified cases
250
300
Figure 4 Proportion of cases with directly observed therapy (DOT) by notification and place. Each dot represents one clinic.
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support or gave tablet diaries to the patients. Five responders outside London cited the use of home visits as a measure of improving compliance. Usage of adherence measures in clinics outside London was associated with a higher median number of notifications, people screened and nursing staff. Twenty of 31 (65%) clinics in London and 11 of 58 (19%) clinics outside London used incentives to increase clinic attendance. Respondents mainly reported refunding travel costs, but other incentives stated were food and prizes for children. Three clinics (all in London) offered cash. There was a trend in London towards high notification in clinics using incentives. Outside London, only two of 62 clinics (3%), both in the same HPU which was in a high notification area, reported universal neonatal BCG vaccination. In London, 12 of 31 clinics (39%) reported universal coverage. The other clinics reported selected neonatal coverage for the risk groups, yet there was no consistency in the named groups. Many respondents did not name any explicit risk groups. Thirty-one (62%) clinics outside London and nine (32%) clinics in London primarily provided neonatal BCG vaccination in hospital. Other sites reported
Box 1
were community clinics (54% in London, 14% elsewhere), tuberculosis clinics (21% in London, 18% elsewhere), a paediatric day care unit (three clinics outside London), and primary care (one clinic in London).
Summary models of service configuration After considering the results of this survey, service configuration for public health control of tuberculosis in England and Wales was defined into working classifications as shown in Box 1.
Discussion This study found that the number of notifications correlated with personnel, in line with previous guidelines.3,4 However, there was marked variation in the screening services and caseload, which has implications on resources, especially in low-incidence areas (Fig. 2). High notification areas, especially in London, provide additional specialist services. Care for children with tuberculosis is provided in different ways, but it is unclear whether there is
Summary models of service configuration for public health control of tuberculosis.
Centralized only Tuberculosis nurses based in a central unit, usually the HPU office, and responsible for tuberculosis control services including tracing contacts and screening all contacts, new entrants and other groups in the area. This model is used in both high and low incidence areas, some with large geographical distances. Some responders identified distance as being problematic, but the model allows all tuberculosis services to be standardized and allows identification of tuberculosis patients seen in nonroutine clinics. Central with satellites In this variation of the central model, there are nurses at the HPU office and at other clinics, such as specialist new entrant and screening clinics and/or generalist clinics in hospitals or with health visitors. In some cases, the HPU nurse may co-ordinate all tuberculosis services including contact tracing using satellite clinics. It allows for co-ordination of services in areas of large geographical distance. General hospital/community model General respiratory nurses based in hospitals and/or the community see tuberculosis patients, sometimes with an additional nurse-led clinic for contact tracing, BCG and/or new entrant screening. This model was seen in the areas of lowest incidence but may lead to fragmentation of services across the HPU. Specialist hospital-based model Tuberculosis nurses based in clinics in local hospitals or specialist community screening units. This model is seen in London and other areas with a relatively high tuberculosis incidence.
ARTICLE IN PRESS A survey of tuberculosis clinic provision in England and Wales access to tuberculosis nurse input (or equivalent). Given the special considerations in diagnosing and treating tuberculosis in children and providing advice to parents, it is important that adequate expertise is available. Clinics in London have higher usage of incentives and DOT (approximately 30% of patients in London). Low notification areas outside London tend to see more patients at home for contact tracing and follow-up. Some of this variation may be accounted for by case-mix.5 The Chief Medical Officer’s Tuberculosis Action Plan to improve services suggests exploring ‘ways of reducing the cost of tuberculosis drugs to patients’.6 At the time of the survey only 16% of clinics outside London and two-thirds of clinics in London reported provision of free prescriptions; the guidelines recommend giving information about help with prescriptions as a measure to improve adherence.1 The Department of Health has now made anti-tuberculous medication free of charge throughout the country. There were inconsistencies in the risk groups reported eligible for neonatal BCG vaccination, which was consequently addressed by the new guidelines.1 The discrepancy in the reported numbers of negative pressure units was too large to be due to double-counting across local boundaries. It is vital that staff are aware of the existing regulatory standards; the guidelines now recommend that these units are clearly identified with a labelling sign.1,7 In view of the large sample (100% within London and 50% outside London) and the geographical stratification, these findings are likely to be representative of service provision in clinics and across HPU areas. Tuberculosis rates vary markedly between regions; from 5.4 per 100,000 in 2004 in the South West to 17.1 in the West Midlands and 42.1 in London.5,8 Configuration of services is dependent on case-mix, geography, local epidemiology and staffing levels, and historical precedent. The use of incentives and adherence measures are valid options.9–11 Previously, 80% of districts have reported a policy of selective vaccination for ethnic minorities.12 This survey was restricted to provide description of service provision, rather than to analyse the effectiveness of different types of provision. The analysis of provision by HPU area is complicated by the possibility of bias arising from the clinics that did not respond. The estimation of personnel time in those clinics that undertook non-specialist tuberculosis work was subjective.
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Conclusions It is useful to document and compare the different service configurations to inform discussion and local planning and audit. The variation in service configuration may reflect local epidemiology, geography, case-mix or historical service models, but it is not known if these are cost-effective. The guidelines recommend culturally relevant, practical and sensitive advice for patients, involving them in treatment decisions, and having a designated key worker whom they can contact.1 In order to achieve this, there is a need to share good practice and explore ways to configure services effectively in line with local needs.
Acknowledgements The authors wish to thank the survey respondents and HPU staff, Local and Regional Services, HPA; Will Roberts and the London Tuberculosis Nurses Network; the British Thoracic Society; Drs Ian Lockhart and Sarah Anderson; and The Guideline Development Group. Ethical approval None sought. Funding None declared. Competing interests None declared.
References 1. National Collaborating Centre for Chronic Conditions. Tuberculosis: clinical diagnosis and management of tuberculosis, and measures for its prevention and control. London: Royal College of Physicians; 2006. 2. Health Protection Agency. Available at: /http://www.hpa.org. uk/hpa/default.htm#S. Last accessed 10 July 2007. 3. Joint Tuberculosis Committee of the British Thoracic Society. Control and prevention of tuberculosis in the United Kingdom: code of practice 2000. Thorax 2000;55: 887–901. 4. Joint Tuberculosis Committee of the British Thoracic Society. BTS guidelines: chemotherapy and management of tuberculosis in the United Kingdom: recommendations 1998. Thorax 1998;53:536–48. 5. Rose AM, Watson JM, Graham C, Nunn AJ, Drobniewski F, Ormerod LP, et al. Public Health Laboratory Service/British Thoracic Society/Department of Health Collaborative Group. Tuberculosis at the end of the 20th century in England and Wales: results of a national survey in 1998. Thorax 2001;56:173–9 [Erratum in: Thorax 2001;56:504]. 6. Department of Health. Stopping tuberculosis in England: an action plan from the Chief Medical Officer. London: Department of Health; 2004.
ARTICLE IN PRESS 612 7. NHS Estates. Isolation facilities in acute settings: inpatient accommodation: options for choice. Health Building Notes 4, Supplement 1, London; 2005. 8. Health Protection Agency. Available at: /http://www. hpa.org.uk/infections/topics_az/tuberculosis/data_menu. htmS. Last accessed 10 July 2007. 9. Fox W. Compliance of patients and physicians: experience and lessons from tuberculosis (I). Br Med J 1983;287:33–5.
S. Balasegaram et al. 10. Fox W. Compliance of patients and physicians: experience and lessons from tuberculosis (II). Br Med J 1983;287:101–5. 11. Volmink J, Garner P. Systematic review of randomised controlled trials of strategies to promote adherence to tuberculosis treatment. Br Med J 1997;315:1403–6. 12. Joseph CA, Watson JM, Fern KJ. BCG immunisation in England and Wales: a survey of policy and practice in schoolchildren and neonates. Br Med J 1992;305:495–8.
www.elsevierhealth.com/journals/pubh
Original Research
A survey of tuberculosis clinic provision in England and Wales Sooria Balasegarama,, Robert Granta, Peter Ormerodb, Jonathan Mantc, John Haywardd, Derek Lowea, Alistair Storye a
National Collaborating Centre for Chronic Conditions, Royal College of Physicians, UK East Lancashire NHS Trust, UK c University of Birmingham, Birmingham, UK d Newham Primary Care Trust, London, UK e Centre for Infections, Health Protection Agency, UK b
Received 1 March 2007; received in revised form 27 July 2007; accepted 24 September 2007 Available online 28 January 2008
KEYWORDS Tuberculosis; Health service provision
Summary Background: This paper presents the methods and findings of a survey of current service configuration in tuberculosis screening, treatment and prevention in England and Wales, which was conducted as part of the development of the National Institute for Health and Clinical Excellence guidelines on tuberculosis for the country. Methods: A random sample of health protection units (HPUs) was surveyed (stratified geographically) in England. For Wales, National Health Service boundaries were used. There was a 100% sample of HPUs (33 clinics) in London and a 50% sample (81 clinics) outside London. The survey was completed by nurses in tuberculosis clinics. The questionnaire asked for details of caseload in terms of active disease (notified cases) and latent infection (screening and chemoprophylaxis), and the different types of specialist tuberculosis services offered. Results: Completed surveys were obtained from 67 of 81 clinics outside London and all 33 clinics in London. An association was found between the number of notifications and personnel, in line with previous British Thoracic Society guidelines. Higher notification areas, especially in London, provide additional specialist services such as human immunodeficiency virus/tuberculosis clinics and specialist paediatric clinics. Clinics in London also reported higher usage of incentives, directly observed therapy (DOT) and free prescriptions. Low notification areas outside London tend to see more patients at home for contact tracing and treatment review. However, there is considerable variation in the use of DOT and chemoprophylaxis that is not entirely explained by differences in caseload. Conclusions: The survey showed that service configuration was organized in different ways in both high and low incidence areas. There is a need to share
Corresponding author.
E-mail address: [email protected] (S. Balasegaram). 0033-3506/$ - see front matter & 2007 The Royal Institute of Public Health. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.puhe.2007.09.015
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good practice and explore ways to configure services effectively in line with local needs. & 2007 The Royal Institute of Public Health. Published by Elsevier Ltd. All rights reserved.
Introduction In 2004, the National Collaborating Centre for Chronic Conditions (NCC-CC), based at the Royal College of Physicians of London, was commissioned to provide new national guidelines for tuberculosis control and treatment by the National Institute for Health and Clinical Excellence.1 As part of this remit, the multidisciplinary Guideline Development Group for Tuberculosis at the NCC-CC surveyed current practice to inform recommendations on service configuration.1 Tuberculosis services are provided by the statefunded National Health Service (NHS). The Health Protection Agency is an independent body in England with a responsibility to protect public health including infectious disease.2 It operates local health protection units (HPUs), whose geographical boundaries are often coterminous with local NHS units. HPUs help to co-ordinate relevant NHS activities including detection, treatment, prevention of tuberculosis and local surveillance.2 Such activities are often devolved across local NHS care providers, whose clinics are at varying levels of specialization and function. In some areas, the HPUs themselves house nurses and health visitors working in public health control of tuberculosis, including: risk assessment of the index case; tracing contacts; screening contacts and new entrants; and vaccination. Treatment activities are then based at the NHS clinics. This survey sought to describe these differences in local service configuration with respect to epidemiology, but it was not designed to assess the quality of service provision.
Methods In England, the sampling unit was HPUs in order to capture all the local providers. In Wales, NHS boundaries were used. Within each HPU chosen, the survey was sent to nurses/health visitors in all tuberculosis clinics. Clinics were targeted via an existing database of tuberculosis nurses and other personnel performing contact tracing. At least one person from each clinic and the HPU was contacted prior to distribution to verify the personnel and contact details for their area. When distributing
the survey to the clinics, a list of all other personnel in the HPU was included to ensure completeness of coverage. For England, HPUs were selected at random within regional strata to capture the geographical spread of incidence. In Wales, sampling units were stratified by regional and NHS boundaries. In London, there was 100% sampling of the five HPUs (33 clinics), and the survey was distributed by the London Tuberculosis Nurses Network so that 100% coverage of the HPUs comprising the London area could be obtained. Outside London, there was 50% random sampling of HPUs (18 of 37). The survey coordinator (SB) sent the questionnaires directly to all clinic contacts within the selected HPUs. A copy of the survey and personnel list was sent to a consultant in communicable disease control in each HPU in the survey in order to check coverage. The questionnaire was based on a previous questionnaire on service provision circulated among the London Tuberculosis Nurses Network. The questions were chosen to reflect the areas included in the guideline. A draft questionnaire was circulated among the Guideline Development Group, the Health Protection Agency’s Centre for Infection and Local and Regional Services; the latter representing the HPUs.2 The revised questionnaire was piloted with two tuberculosis nurses. The survey was sent out to respondents by e-mail or post in July 2004, and followed-up with telephone calls 6 and 9 weeks after distribution, at which stage HPUs were enlisted to chase non-responders locally.
Statistical analysis Questionnaires were anonymized by the survey coordinator (SB), who alone held the database of clinic and HPU identifiers. The data were analysed at the NCC-CC (by SB, RG and DL) using SPSS Version 11.5, providing results at clinic level and at HPU level. Clinics were asked to estimate the number of personnel and the proportion of time spent on tuberculosis-related work. Where clinics were unable to estimate this because it was very low but not zero, a value of ‘less than 0.1 whole-time equivalents (WTEs)’ was assigned. As not all questions were applicable to all respondents, the denominator varied between questions.
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Results London questionnaires were collected by the London Tuberculosis Nurses’ Clinic profile survey, with a 100% response rate (33/33 clinics) from the five HPUs. Most (n ¼ 28) responders were specialist nurses or health visitors, and three were hospital respiratory nurses. Outside London, 72 questionnaires were received and five were eliminated as duplicates (response rate 67/81 ¼ 83%). In two HPUs out of 18 sampled outside London, responses were insufficient for aggregated analysis. In one HPU, three chest physicians were asked by the HPU to complete the survey when the tuberculosis nurses at their clinics did not reply. The responses from clinics from this HPU were insufficient to allow HPU analysis, although they were used in the clinic analysis. In the other HPU, there were no responses from the two clinics surveyed. The other 16 HPUs outside London provided sufficient responses. Within these, the response from clinics was 100% (nine clinics), 80–99% (four clinics), 60–79% (two clinics) and 50% (one clinic). The 67 responses comprised 13 HPU-based teams,
nine community generalists, nine community specialist tuberculosis nurses/health visitors, 19 hospital generalist respiratory nurses, 10 specialist nurses/health visitors and seven doctors (two community based).
Analysis by HPU area Fig. 1 shows that personnel in WTEs correlates most clearly with numbers of notified cases (Spearman’s rho ¼ 0.852, Po0.001). Across HPUs, the WTE rate was approximately one per 40 notifications, which is an indication that staffing is in line with previous guidelines.3,4 However, workload may not be reflected by notification rate alone, as it does not account for the caseload of screening new entrants and contacts of cases (Fig. 2). This screening caseload varied markedly between HPUs and correlates with WTE specialist personnel (Spearman’s rho ¼ 0.635, P ¼ 0.002), notifications (Spearman’s rho ¼ 0.725, Po0.001) and chemoprophylaxis (Spearman’s rho ¼ 0.857, Po0.001). The reported number of negative pressure rooms available for patients with tuberculosis was much
1000 900 800
No of notified cases
700 600 500 400 300 200 Location: Elsewhere London
100 0 0
2
4
6
8 10 12 14 16 18 WTE nurses or health visitors
20
22
24
Figure 1 Number of nurses and health visitors (whole-time equivalents) by notified cases and place. Each dot represents one health protection unit area.
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5,000
No of contacts and new entrants screened
4,500 4,000 3,500 3,000 2,500 2,000 1,500 Location: Elsewhere London
1,000 500 0 0
2
4
6
8 10 12 14 16 18 WTE nurses or health visitors
20
22
24
Figure 2 Total new entrants and contacts of cases screened by personnel and place. Each dot represents one health protection unit area.
higher than expected despite contacting respondents specifically to confirm this.
Analysis by clinic Table 1 lists the survey results by clinic and location (London/outside London). For most of the questions in the survey, the provision of a particular service does not appear to be associated with increased workload as measured by notifications or screening caseload (contacts of cases and new entrants to the country), or with higher staffing levels. Over half of the service providers in the survey had a dedicated tuberculosis clinic, often in areas with a higher caseload of active tuberculosis (shown by number of notifications), but this was not reflected in the screening caseload (number of new entrants and case contacts screened). Screening was sometimes reported as being carried out in a separate dedicated clinic. Outside London, 18 of 59 (31%) tuberculosis service providers had nurse-led follow-up clinics that review patients undergoing treatment. The
majority of these (n ¼ 15) conducted follow-up mainly or wholly at the patient’s home. In London, 55% of tuberculosis service providers had nurse-led follow-up clinics, but none of these visited patients at home. In London, 10 of 33 (30%) service providers had a specialist human immunodeficiency virus (HIV)/ tuberculosis clinic, although five other clinics reported access to these specialist clinics. Outside London, five of 60 (8%) service providers reported a joint clinic; these clinics tended to be in higher notification areas. Children were either seen by specialist tuberculosis doctors, respiratory doctors or paediatric doctors. Generalist paediatric doctors may liaise with tuberculosis nurses and, in one case, ran a service for BCG vaccination, chemoprophylaxis and treatment with tuberculosis nurse input. The number and proportion of service providers running paediatric clinics with specialist tuberculosis nurse input was 11 (17%) outside London and 21 (64%) in London. Four other clinics, one outside London and three in London, had access to these clinics (Table 1).
ARTICLE IN PRESS 606 Table 1
S. Balasegaram et al. Summary results per clinic.
Presence ofy n
No. of notifications
No. of people screeneda
Nursing staff WTE
Median IQRb
Median IQR
Median IQR
Dedicated tuberculosis clinic? London Yes 21 (64%) 126 No 12 76 Elsewhere Yes 34 (53%) 23 No 28 13
Range
Rarec–5.8 0.6–3.4
32–240 514 28–135 533
296–1286 145–2600 3.0 252–910 227–928 2.0
1.5–4.5 1.5–2
9–40 9–41
1–290 3–100
68–804 84–772
0.2–1.9 0–5.6 Rare–1.3 Rare–2.6
44–147 74–179
28–240 721 43–237 484
373–1256 277–2600 2.0 227–891 145–1297 2.0
1–3.7 2–3.4
9–42 9–39
2–290 1–92
82–865 78–637
0.2–1.8 0–5.6 Rare–1.4 Rare–2.6
76–145 52–181
32–171 524 28–240 484
402–1219 247–1275 2.5 252–1113 145–2600 2.0
2.0–3.5 1.0–3.6
9–60 9–33
3–290 1–137
143–948 62–642
0.5–2.0 Rare–5.6 Rare–1.2 0–2.6
73–176 42–135
32–240 509 28–149 514
321–1281 145–2600 2.0 252–910 227–928 2.0
24–94 9–34
1–290 0–137
113–1094 22–1716 63–741 30–2400
73–149
28–240 352
233–607
129–2000 2.0
1.7–3.7
8–41 9–30
0–290 8–42
37–253 21–135
9–3068 3–664
Rare–1.5 0–5.6 Rare–0.8 Rare–2.0
17 (52%) 120 16 101
60–194 62–137
28–240 672 42–171 514
269–1623 247–2600 2.0 286–1064 145–1275 2.0
1.3–4.0 1.2–3.0
53 (83%) 18 11 11
9–40 8–24
0–290 3–137
77–788 58–784
22–2400 35–1000
0.7 Rare
Rare–1.5 0–5.6 Rare–1.0 Rare–2.0
18 (56%) 81 14 120
45–147 83–169
28–237 204 42–240 1
124–306 0–328
3–697 0–600
2.0 2.0
1.4–3.8 1.8–3.7
50 (82%) 24 11 10
9–43 6–14
0–290 4–92
40–522 0–203
0–1500 0–400
0.5 0.9
Rare–1.5 0–5.6 0.6–1.8 Rare–2.5
Specialist tuberculosis/HIV clinic? London Yes 10 (30%) 120 No 23 102 Elsewhere Yes 16 (27%) 31 No 44 16 Paediatric tuberculosis clinic? London Yes 24 (73%) 102 No 9 120 Elsewhere Yes 12 (19%) 31 No 52 15 Contact tracing clinic? London Yes 30 (91%) 115 No 3 Elsewhere Yes 45 (70%) 17 No 19 12
Specialist new London Yes No Elsewhere Yes No
Range
77–184 39–114
Nurse-led follow-up clinic? London Yes 18 (55%) 102 No 15 123 Elsewhere Yes 18 (31%) 24 No 41 13
BCG clinic? London Yes No Elsewhere Yes No
Range
229 308
166 300
749 137
678 163
125 52
314 91
22–1716 30–2400
30–2400 22–1193
51–1716 22–2400
0.9 0.5
0.8 0.2
1.0 0.5
1.3 0.6
0.6 Rare
1.8–4.0 1.0–3.0
0.6–5.0 Rare–5.8
1.0–5.0 Rare–5.8
Rare–5.8 0.6–3.4
0.4–2.0 Rare–5.6 Rare–1.0 0–2.5
0.6–5.8
0.6–5.8 Rare–5.0
entrants clinic?
148 2
0.6–5.8 1.0–5.0
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Table 1 (continued ) Presence ofy n
No. of notifications
No. of people screeneda
Nursing staff WTE
Median IQRb
Median IQR
Median IQR
Screening high-risk groups? London Yes 13 (39%) 101 No 20 120 Elsewhere Yes 15 (27%) 30 No 41 16 Prison care (excluding visits)? London Yes 7 (29%) 125 No 17 73 Elsewhere Yes 13 (33%) 25 No 26 17 Prison visits? London Yes No Elsewhere Yes No
8 (33%) 16
Range
Range
62–129 60–181
32–207 499 28–240 533
373–1205 227–2600 2.0 247–1200 145–1275 2.0
1.3–3.0 1.2–4.0
12–60 8–37
8–94 1–290
86–927 62–812
Rare–1.8 Rare–2.0 0.2–1.7 0–5.6
510 166
63–1716 22–2400
1.0 0.6
1.0–5.0 Rare–5.8
101–149 76–207 346 42–128 28–181 688
237–906 227–1297 3.0 321–1132 145–2600 2.0
2.0–3.0 1.0–2.7
15–40 7–36
3–290 1–137
62–755 51–632
Rare–2.0 0–5.6 0.2–1.5 0–2.6
95–188 43–121
76–207 514 28–141 469
346–1297 346–1297 2.5 242–996 145–2600 2.0
2.0–3.8 1.0–2.8
10–37 4–41
5–290 1–137
63–704 51–804
0.2–2.0 0–5.6 Rare–1.4 0–2.6
68–143
28–237 514
277–1200 145–2600 2.0
1.7–3.4
9–43 8–15
2–290 1–100
85–839 28–683
Rare–1.5 0–5.6 Rare–1.9 Rare–2.5
115 63
76–149 42–129
28–240 524 32–237
294–1256 227–2600 2.0 1.0
2.0–3.7 1.0–2.3
17 17
8–58 9–42
1–137 2–290
126–966 72–846
0.2–1.6 0–2.0 Rare–1.8 0–5.6
60–149 58–169
28–240 533 43–237 246
365–1238 227–2600 2.0 145–346 145–346 2.0
1.0–3.6 1.8–3.7
9–44 6–30
3–290 1–137
92–921 45–332
Rare–1.8 0–5.6 Rare–0.9 0–2.6
141 76
15 (38%) 21 24 19
Directly observed therapy? London Yes 26 (84%) 109 No 5 Elsewhere Yes 47 (80%) 24 No 12 12 Free prescriptions? London Yes 22 (69%) No 10d Elsewhere Yes 9 (16%) No 47
Range
Outreach service? London Yes 27 (82%) 120 No 6 76 Elsewhere Yes 40 (67%) 15 No 20 17
Measures to improve compliance? London Yes 32 (97%) 115 73–149 No 1 Elsewhere Yes 45 (73%) 23 9–45 No 17 9 4–24
382 291
395 166
368 85
536 160
632 152
51–812 22–1716
50–812 22–1716
30–1716 22–2400
22–1193 30–2400
35–2400 22–1052
0.9 0.9
1.0 0.6
0.8 0.5
0.5 0.6
0.8 0.2
2.0–5.0 Rare–5.0
1.0–5.0 Rare–5.0
Rare–5.8
0.6–5.0 Rare–5.8
Rare–5.0 1.0–5.8
28–240 514
277–1200 145–2600 2.0
1.6–3.5
3–290 1–92
90–876 35–274
0.2–1.8 Rare–5.6 Rare–1.0 0–2.6
432 68
30–2400 22–1000
0.8 0.2
Rare–5.8
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Table 1 (continued ) Presence ofy n
No. of notifications
No. of people screeneda
Nursing staff WTE
Median IQRb
Median IQR
Median IQR
Incentives for attending clinics? London Yes 20 (65%) 129 No 47 11d Elsewhere Yes 11 (19%) 25 No 47 15
Range
Range
Range
95–174 33–85
43–240 499 28–102
272–1256 145–2600 3.0 1.5
2.0–4.8 1.0–2.0
10–83 9–41
8–137 1–290
100–937 56–684
Rare–2.0 Rare–2.0 Rare–1.5 0–5.6
812 166
82–1000 22–2400
0.8 0.5
1.0–5.8 Rare–2.0
Where there are five or fewer valid data, these statistics may be misleading and are therefore omitted. For contact tracing clinics, this shows numbers of contacts only. For new entrant clinics, this shows new entrants only. For all other categories, these two are combined. b IQR, interquartile range (the middle half of the data). The numbers shown are the first and third quartiles. c Rare’ is defined here as less than 0.15 whole-time equivalents (WTE), or a general respiratory nurse who spends a small unquantified proportion of time on tuberculosis. d Missing data made it impossible to derive meaningful statistics on the numbers of people screened in this row. a
300
200
150
100
Location: Elsewhere London
50
No of people receiving chemoprophylaxis
250
No of notified cases
Location: Elsewhere London
200
160
120
80
40
0
0 0
400
800
1,200 1,600 2,000 2,400 2,800 3,200 No of contacts screened
0
400
800
1,200 1,600 2,000 2,400 2,800 3,200 No of contacts screened
Figure 3 (a) Contacts of cases screened by notifications and place and (b) contacts of cases screened and chemoprophylaxis by place. Each dot represents one clinic.
In 22 (34%) clinics outside London and three (9%) clinics in London, cases were seen in paediatric clinics without tuberculosis nurse input. In 27 clinics outside London and six clinics in London, cases were seen by a respiratory physician or the professional was not recorded. Outside London, 10 (16%) service providers saw patients at home for contact tracing. However, in London, service providers only visited patients at
home in exceptional cases. Fig. 3(a and b) illustrates the variation in the range of contacts screened with numbers notified and with the number of people receiving chemoprophylaxis. New entrants (arrivals from areas of high incidence) are advised to have screening for tuberculosis, and BCG or treatment if required.3 Screening was provided via a dedicated new entrants service, often a primary-care-based holistic
ARTICLE IN PRESS A survey of tuberculosis clinic provision in England and Wales new entrants programme, or in general tuberculosis clinics. The survey did not cover the newer arrangements in fast-track induction centres for refugees, which are organized by the Home Office. Within London, 18 (56%) service providers had a dedicated new entrants clinic. Outside London, 27 (44%) service providers had a dedicated new entrants clinic and 21 (35%) saw new entrants in a general clinic, usually the BCG clinic. For two (3%) local services, new entrants were seen at home. The remaining 11 respondents had no specific screening programme for new entrants. The median number of people screened was higher in clinics offering new entrant screening outside London, but there was considerable overlap. A minority of clinics ran high-risk screening for certain groups such as drug users, the homeless and alcoholics (see Table 1). Care of prisoners was similar both in and outside London; approximately one-third of tuberculosis nurses with prisons in the area went on prison visits. Approximately four-fifths of all clinics used directly observed therapy (DOT), and outside London, this was associated with high notification
609
clinics. However, the proportion of cases on DOT varied, differing in and out of London, possibly reflecting differences in case-mix (Fig. 4). Only nine of 47 (16%) clinics outside London were able to provide free prescriptions of anti-tuberculous medication, compared with 22 of 32 (69%) clinics in London. This may be related to the higher number of notifications in London. A majority of clinics carried out some form of outreach; most stated patients’ homes, but other places stated were nursing and residential homes, detox shelters and other drug treatment venues, homeless shelters, clubs and other community centres, and places of work. Outreach work was related to clinics with a higher median number of notifications (London) and people screened, reflecting areas of higher tuberculosis incidence. Thirty-two of 33 (97%) clinics in London and 45 of 62 (73%) clinics outside London reported using measures to improve adherence. Most clinics reported using urine assays, examining urine colour, using tablet counts, and using controlled dosage systems. Other respondents (outside London) also asked patients to sign care plans, gave regular
0.7
Location: Elsewhere London
Ratio DOT cases : notified cases
0.6
0.5
0.4
0.3
0.2
0.1
0.0 0
50
100
150 200 No of notified cases
250
300
Figure 4 Proportion of cases with directly observed therapy (DOT) by notification and place. Each dot represents one clinic.
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support or gave tablet diaries to the patients. Five responders outside London cited the use of home visits as a measure of improving compliance. Usage of adherence measures in clinics outside London was associated with a higher median number of notifications, people screened and nursing staff. Twenty of 31 (65%) clinics in London and 11 of 58 (19%) clinics outside London used incentives to increase clinic attendance. Respondents mainly reported refunding travel costs, but other incentives stated were food and prizes for children. Three clinics (all in London) offered cash. There was a trend in London towards high notification in clinics using incentives. Outside London, only two of 62 clinics (3%), both in the same HPU which was in a high notification area, reported universal neonatal BCG vaccination. In London, 12 of 31 clinics (39%) reported universal coverage. The other clinics reported selected neonatal coverage for the risk groups, yet there was no consistency in the named groups. Many respondents did not name any explicit risk groups. Thirty-one (62%) clinics outside London and nine (32%) clinics in London primarily provided neonatal BCG vaccination in hospital. Other sites reported
Box 1
were community clinics (54% in London, 14% elsewhere), tuberculosis clinics (21% in London, 18% elsewhere), a paediatric day care unit (three clinics outside London), and primary care (one clinic in London).
Summary models of service configuration After considering the results of this survey, service configuration for public health control of tuberculosis in England and Wales was defined into working classifications as shown in Box 1.
Discussion This study found that the number of notifications correlated with personnel, in line with previous guidelines.3,4 However, there was marked variation in the screening services and caseload, which has implications on resources, especially in low-incidence areas (Fig. 2). High notification areas, especially in London, provide additional specialist services. Care for children with tuberculosis is provided in different ways, but it is unclear whether there is
Summary models of service configuration for public health control of tuberculosis.
Centralized only Tuberculosis nurses based in a central unit, usually the HPU office, and responsible for tuberculosis control services including tracing contacts and screening all contacts, new entrants and other groups in the area. This model is used in both high and low incidence areas, some with large geographical distances. Some responders identified distance as being problematic, but the model allows all tuberculosis services to be standardized and allows identification of tuberculosis patients seen in nonroutine clinics. Central with satellites In this variation of the central model, there are nurses at the HPU office and at other clinics, such as specialist new entrant and screening clinics and/or generalist clinics in hospitals or with health visitors. In some cases, the HPU nurse may co-ordinate all tuberculosis services including contact tracing using satellite clinics. It allows for co-ordination of services in areas of large geographical distance. General hospital/community model General respiratory nurses based in hospitals and/or the community see tuberculosis patients, sometimes with an additional nurse-led clinic for contact tracing, BCG and/or new entrant screening. This model was seen in the areas of lowest incidence but may lead to fragmentation of services across the HPU. Specialist hospital-based model Tuberculosis nurses based in clinics in local hospitals or specialist community screening units. This model is seen in London and other areas with a relatively high tuberculosis incidence.
ARTICLE IN PRESS A survey of tuberculosis clinic provision in England and Wales access to tuberculosis nurse input (or equivalent). Given the special considerations in diagnosing and treating tuberculosis in children and providing advice to parents, it is important that adequate expertise is available. Clinics in London have higher usage of incentives and DOT (approximately 30% of patients in London). Low notification areas outside London tend to see more patients at home for contact tracing and follow-up. Some of this variation may be accounted for by case-mix.5 The Chief Medical Officer’s Tuberculosis Action Plan to improve services suggests exploring ‘ways of reducing the cost of tuberculosis drugs to patients’.6 At the time of the survey only 16% of clinics outside London and two-thirds of clinics in London reported provision of free prescriptions; the guidelines recommend giving information about help with prescriptions as a measure to improve adherence.1 The Department of Health has now made anti-tuberculous medication free of charge throughout the country. There were inconsistencies in the risk groups reported eligible for neonatal BCG vaccination, which was consequently addressed by the new guidelines.1 The discrepancy in the reported numbers of negative pressure units was too large to be due to double-counting across local boundaries. It is vital that staff are aware of the existing regulatory standards; the guidelines now recommend that these units are clearly identified with a labelling sign.1,7 In view of the large sample (100% within London and 50% outside London) and the geographical stratification, these findings are likely to be representative of service provision in clinics and across HPU areas. Tuberculosis rates vary markedly between regions; from 5.4 per 100,000 in 2004 in the South West to 17.1 in the West Midlands and 42.1 in London.5,8 Configuration of services is dependent on case-mix, geography, local epidemiology and staffing levels, and historical precedent. The use of incentives and adherence measures are valid options.9–11 Previously, 80% of districts have reported a policy of selective vaccination for ethnic minorities.12 This survey was restricted to provide description of service provision, rather than to analyse the effectiveness of different types of provision. The analysis of provision by HPU area is complicated by the possibility of bias arising from the clinics that did not respond. The estimation of personnel time in those clinics that undertook non-specialist tuberculosis work was subjective.
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Conclusions It is useful to document and compare the different service configurations to inform discussion and local planning and audit. The variation in service configuration may reflect local epidemiology, geography, case-mix or historical service models, but it is not known if these are cost-effective. The guidelines recommend culturally relevant, practical and sensitive advice for patients, involving them in treatment decisions, and having a designated key worker whom they can contact.1 In order to achieve this, there is a need to share good practice and explore ways to configure services effectively in line with local needs.
Acknowledgements The authors wish to thank the survey respondents and HPU staff, Local and Regional Services, HPA; Will Roberts and the London Tuberculosis Nurses Network; the British Thoracic Society; Drs Ian Lockhart and Sarah Anderson; and The Guideline Development Group. Ethical approval None sought. Funding None declared. Competing interests None declared.
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