Pulmonary rehabilitation programmes in the UK: a national representative survey

Clinical Rehabilitation 2004; 18: 444 449 Pulmonary rehabilitation programmes in the UK: a national representative survey Abebaw M Yohannes Department of Physiottherapy, Manchester Metropolitan University and Martin J Connolly Department of Geriatric Medicine, The University of Manchester, Manchester, UK Received 29th March 2003; returned for revisions 9th May 2003, revised manuscript accepted 20th July 2003. Background: Respiratory disease is a common cause of disability in middle and late life. Pulmonary rehabilitation programmes improve exercise capacity and quality of life in patients with chronic lung diseases. However, currently, in the UK the availability of pulmonary rehabilitation programmes and their characteristics are unknown. Methods: We surveyed pulmonary rehabilitation programmes in terms of number, size, duration, content of educational and exercise programme, and staffing. We mailed a 17-item questionnaire previously used in Canadian study to 190 physiotherapy departments within acute hospitals in UK. Results: One hundred and seventy-one (90%) responses were received. Sixty-eight centres (40%) run a pulmonary rehabilitation programme (99% outpatient). Mean age of subjects was 70 in only seven centres (10%), though most cited no upper age limit. Ninety-nine per cent of centres incorporated exercise training. Programmes recruited a median group size of 10 patients (range 4-17) at a given time with a median duration of eight weeks (range 5-24) weeks. Most (71 %) run twice per week with a duration of 2 hours (63%). Only half offered smoking cessation support, and a minority gave advice on coping with disease, travel and sexual matters. Conclusion: Around 40% of surveyed hospitals run a pulmonary rehabilitation programme and most of the programmes are similar in their format, content and staffing. Despite the high prevalence of chronic obstructive pulmonary disease (COPD)-related disability in old age most programmes chiefly included younger subjects. This may reflect lack of referral. Greater awareness and expansion of availability of programmes is indicated. Introduction In the UK it is estimated that over 600 000 patients have a diagnosis of chronic obstructive pulmonary disease (COPD).1 Respiratory disease is the second Address tor correspondence: Abebaw M Yohannes, Manchester Metropolitan University. Elizabeth Gaskell Campus, l1atersage Road, Manchester M13 OJA, UK. e-mail: Ayohanne@Fs3.scg. man.ac.uk c,l Arnold 2004 commonest self-reported cause of disability in old age.2 Four-fifths of all deaths due to COPD occur in individuals aged 70 or older.3 In order to reduce the burden of health care cost and improve functional activities and quality of life in patients with COPD, many researchers advocate the interdisciplinary intervention approach of pulmonary rehabilitation. The evidence base for this type of rehabilitation is well recognized and has been highlighted by professional societies4'5 and by a 10.1 191/026921 5504cr736oa

Pulmonarv rehabilitation programmes in the UK 445 recent Cochrane review.6 Patient groups arce currently campaigning for increased availability of pulmonary rehabilitation services. Pulmonary rehabilitation improves exercise capacity and quality of life in patients with COPD including the elderly7 and in a comparative study of the benefits of pulmonary rehabilitation in older versus younger COPD patients no difference has been observed in terms of improvement in quality of life, drop-out rates or adherence to the rehabilitation programme.8 To date there have been no studies that have investigated the availability or structure of pulmonary rehabilitation programmes in the UK. In contrast, a recent survey9 in the UK that investigated the availability of cardiac rehabilitation programmes identified relatively good provision of cardiac rehabilitation centres for patients with cardiac problems (n = 280 in operation). We surveyed UK hospitals to assess provision of pulmonary rehabilitation programmes and their content size, duration and staffing, together with the age range of the patients. Methods We surveyed 190 physiotherapy departments within acute hospitals that were previously part of a survey in the context of stroke rehabilitation in the UK. 0 These comprise 72%YO of all acute admitting hospitals in the UK. Data were collected in February 2001. Questionnaires were sent to physiotherapy managers with a covering letter explaining the purpose of the study and also requesting distribution to the co-ordinator of any pulmonary rehabilitation programme or, if there was no a pulmonary rehabilitation programme in the hospital, the return of questionnaire to the authors (self-addressed envelope enclosed). We did not send a reminder letter to those who did not respond to our initial mailing. Instrument We employed a previously validated questioninaire, which investigated similar pulmonary rehabilitation programmes in Canada. The 17-item questionnaire has reliability of agreement between items of over 90%. l We made some minor changes to the wording of some of the questions to aid clinicians in UK. For example, 'respirologist' was changed to 'respiratory physician', and 'physical therapist' to 'physiotherapist'. We also added a further question 'What is the mean age (range) of patients enrolled in the pulmonary rehabilitation prog.ramme?' Statistical analysis Simple descriptive statistics were used. We used the same protocol as reported in Canada' 1 to estimate maximum number of patients who could attend pulmonary rehabilitation programme centres in the UK in a single year: The number of patients that each programme could accommodate in a single year was calculated and the information added for each programme. For example, if a programme enrolled 20 patients for eight weeks, then it could accommodate 130 (20 times fiftv-two weeks divided by eight) patients per year.'1 Results Of 190 questioninaires mailed, 171 (90%) responses were received. Sixty-eight centres (40%) run a pulmonary rehabilitation programme (99% outpatient). Table 1 shows the overall organization of the pulmonary rehabilitation programmes. Pulmonary rehabilitation centres have a median group size, recruited at a givein time, of 10 subjects (range 4 17). The programmes run in most centres two days a week (range 1-3 days). Each session lasted in most centres 2 hours (range 1-3 hours). The median length (range) of the programmes was eight (5 24) weeks. Sixty-eight (100%) of the centres reported having a physiotherapist as a member of the team. Fifty-seven (84%) of the programmes had an occupational therapist as a member of the team. Fifty-five (81%) of the centres reported having a dietician; 53 (77%) had a nurse; 52 (76Y) had a respiratory physician; 35 (51%) had a pharmacist; 29 (43%) had a social worker; 14 (21%) a psychologist; eight (12%) an exercise physiologist and two (3%) a geriatrician. The pulmonary rehabilitation co-ordinators were: 55 (77%) physiotherapist, nine

446 AM Yohanines and AMJ Connollj Table 1 Structure of pulmonary rehabilitation programmes (n = 68 centres) Frequency per week Session duration per week Length of programme in weeks Group size Centres Days Centres Hours Centres Duration Centres Patients 48 (71%) 2 days 43 (63%) 2 hours 32 (47%) 8 weeks 28 (41%) 10 17(25%) 1 day 13(19%) 12 hours 20(29%) 6 weeks 14(21%) 12 3 (4%) 3 days 6 (9%) 1 hour 5 (7%) 7 weeks 12 (18%) 8 2 (3%) 2-2 hours 4 (5%) 10 weeks 5 (7%) 15 2 (3%) 3 hours 3 (4%) 12 weeks 4 (6%) 6 1 (1 %) 14 hours 2 (3%) 5 weeks 2 (3%) 9 1 (1%) 13-hours 1 (1%) 11 weeks 1 (1%) 4 1 (1%) 24 weeks 1 (1%) 5 1 (1 %) 17 (13%) respiratory physician, four (6%) combined post nurse and physiotherapist, two (3%) geriatrician and one (1%) an occupational therapist. Ninety-nine per cent of the centres incorporated exercise training as the major aspect of the programme. Education was included by 64 (94%) of the centres, upper extremity training by 66 (97%), training in activities of daily living by 55 (81%), relaxation training by 57 (84%), nutritional support by 59 (87%), psychosocial support by 52 (77%) and inspiratory muscle training by 19 (28%''/O). Mean age of subjects ranged from 55 years to 75 years with a 'mean of means' of 62.3 years. Mean age of subjects was. 70 years in only seven centres (10%0), though most cited no upper age limit. Sixty-seven (99%) of the centres included COPD patients. Forty-six (68%) included adults with asthma, 11 (16%) included bronchiectatic patients, 40 (59%) included those with restrictive lung disease, 36 (53%) pre- and postlung reductioni surgery, and 15 (22%) included patients on the lung transplant waiting list. Most of the programmes (90%) did not exclude a patient who was smoking at the time of entry to the programme. However, only 34 (50%) of the centres included smoking cessation as a part of the rehabilitation programme. Forty-four (65%) recruited their subjects on a 'block basis' and 24 (35%/t)) ran their programme on a 'continuous basis'. Multiple sources of referral were reported by pulmonary rehabilitation programmes. Sixty-six centres (97%) reported referral from chest physicians, 38 (56%) from general practitioners and 14 (21%) from geriatricians. None of the centres reported a self-referral system. Table 2 shows the components of educational programmes. Around 90% of the centres incorporated education concerning medication and use of inhalers. The least covered areas were sexuality, coping with disease and advice on travel. Most of the pulmonary rehabilitation programmes employed outcome measures pre- and post-programme to monitor the efficacy of their intervention. Sixty-three of the programmes used quality of life questionnaires before and at the completion of the programme. Most employed disease-specific quality of life questionnaires: 27 (421Yo) Breathing Problems Questionnaire; 19 (28%) Chronic Respiratory Disease Questionnaire; 14 (22%) St. George's Respiratory Questionnaire. Table 2 Components of educational programme Use of inhalers Medication Breathing exercises Energy conservation Relaxation - panic control Activities of daily living Signs of infection Aerobic exercise Strengthening exercise Indoor and outdoor pollution Oxygen therapy Travel Sexuality Advice coping with the disease 63 (92%) 61 (90%) 61 (90%) 60 (89%) 59 (87%) 57 (84%) 55 (81%) 51 (75%) 52 (77%) 39 (58%) 38 (57%) 23 (35%) 10 (14%) 10 (14%)

Pulnonarv rehabilitation programmes in the UK 447 A miniority used generic quality of life measures: four (6%) the SF-36 and one (1%) the Sickness Impact Profile. Other outcome measures included in the programmes were: Hospital Anxiety and Depression Scale by 17 (25%); Borg Scale by five (7%); a visual analogue scale of breathlessness by five (7%); and an activities of daily living questionnaire (London Chest Activities of Daily Living Questionnaire) by four (6%). Sixty-two (91%) of the programmes incorporated a shuttle walk test and 11 (16%) included the 6-minute walk test. Of those surveyed 48 (71%) had patients on a waiting list. Mean waiting time was nine weeks (range 0-10 months). Forty-seven (70%) of the centres followed-up patients post rehabilitation. Mean follow-up period was 4.8 months (range 0 18 months), although the level of support and maintenance exercise provided varied across the programmes. Only 20 (29%) of the centres performed periodic assessment in combination with supervised exercise session and monitoring individual condition using assessment tools. Fifteen (22%) conducted periodic assessment only, 12 (17%!/O) ran a support group and 19 (28%) combined periodic assessment with assessment tools, and supervised maintenance exercise sessions and also ran a support group. Discussion To our knowledge this is the first survey to investigate pulmonary rehabilitation programmes in the UK in regard to their format, size, content Clinical messages * Most of the pulmonary rehabilitation programmes in the UK are similai in their format, content and staffing. * Only 40%/0 of surveyed hospitals run a ' pulmonary rehabilitation programme. * Despite the high prevalence of chronic obstructive pulmonary disease-related disability in old age most programmes mainly included younger subjects. and age groups. Indeed a recent Cochrane review of the subject quoted Canadian data only6 and we have found only one other study, from the USA, in the literature.' In addition, we have attempted, using previously published methodology simnilar to that in the Canadian survey, 1" to quantify the maximum number of patients that could be attending existing pulmonary rehabilitation programmes in a single year in the UK. Our findings suggest that approximately 5509 patients are attending pulmonary rehabilitation programmes per annum in the UK. As it is estimated that over 600 000 patients diagnosed with COPD live in the UK,' this suggests that less than 1%/o of the UK COPD population are receiving pulmoinary relhabilitation in any one year. Even if one optimistically assumes that all acute admitting UK hospitals for which we have no information offer a pulmonary rehabilitation service with the same mean size and duration as that found in the current survey, less than 1.5% of the UK COPD population have access to pulmonary rehabilitation per year. Numbers in this regard (1 1.5% of the UK COPD population) are disappointing, though not surprising and compare with Canadian estimates of 2% of their COPD population.6"'i These data compare unfavourably with the data on provision of cardiac rehabilitation in the UK.9 Not surprisingly, almost all UK programmes are offered to outpatients. This is similar to Canadian experience but slightly higher than with (admittedly more historic) US experience.' 1 12 The reason why most programmes now run in the outpatient setting is likely to be the evidence base, which suggests that outpatient pulmonary rehabilitation programmes have benefit in increasing exercise capacity,'3 improving health-related quality of life'4 and reducing hospitalization post rehabilitation, 15 and aire cost eftective comnpared with inpatient rehabilitation'16 with less risk of hospital-acquired infection and other complications of hospitalization. In general, UK pulmonary rehabilitation programmes are similar to those in North America in terms of their structure, source of patients and programme content. However, they differ in terms of the lead pulmonary rehabilitation co-ordinator. In the UK programmes are mostly co-ordinated by a physiotherapist, whereas in Canada and the US a respiratory physician usually takes the lead.""2

448 AM Yohannes and AMJ Connolly This disparity may partly relate to the extended multidisciplinary nature of rehabilitation within the UK National Health Service. Respiratory physicians referred most of the patients to pulmonary rehabilitation programmes with particularly limited referral by geriatricians, especially given the demographics of the COPD population. Studies report that elderly patients with COPD can benefit from pulmonary rehabilitation programmes in terms of improving quality of life and reducing the burden of health care. Despite the increasing burden of COPD in old age, including frequenit episodes of hospital admission with acute exacerbation, only seven centres reported the mean age of the patients to be. 70 years. Further study is required to explain the reason behind for this limitation. It may relate to lack of awareness among geriatricians (as putatively evidenced by the fact that only 21% of programmes reported referral from geriatricians), though no relationship was observed between referral by geriatricians and age group of patients attending pulmonary rehabilitation centres. Other factors such as concomitant physical disabilities (e.g., ischaemic heart disease, musculoskeletal disease), need for oxygen therapy during rehabilitation, transportation and social problems may have differentially affected recruitment of elderly subjects. We have no data in this regard however. In contrast to the Canadian and US experience, where between one-third and one-half of programmes accept self-referral, no UK programme did so. In light of current poor availability of programmes in the UK, and the potential for inappropriate self-referral to overwhelm assessment processes, the lack of a self-referral system is probably not a matter of concern at this time, though it may merit serious consideration in the future. All the centres surveyed except one encouragingly incorporate exercise training into the programmes. It is also encouraging that most of the programmes use a valid outcome measures including walk tests and disease-specific quality of life questionnaires to monitor the effects of intervention. The lack of use of ADL questionnaires may relate to the fact that such questionnaires, validated for COPD -population, have only recently become available. The fact that only 50% of the UK programmes incorporate smoking cessation support is disappointing. This is almost identical to US experience in a survey carried out 10 years ago,'1 despite the increasing interest in smoking cessation research, the rise in public awareness, and availability and effectiveness of pharmacological support for cessation. The Canadian experience is perhaps even more disappointing, with only 32%/, of programmes offering smoking cessation support in their survey carried out in 1996.1(' Equally disappointing are the inclusion of advice on sexuality in only 14'%o and travel advice in only 35% of educational advice UK programmes. These figures compare unfavourably with US and Canadians programmes (sexuality - 68% and 47%: travel - 75% and 67%)."0'" Caution is required in interpretation of our findings as not all UK acute hospitals have been included in the survey. However the hospitals surveyed were previously selected for a survev of stroke service provision9 on1 the basis of the existence of physiotherapy departments with a teaching role and we have no reason to suppose they are unrepresenitative of the services of the COPD population nationally. They represent 722% of all major acute admitting hospitals, and our response rate of 90% (with only one mailing) compares well with Canadian survey (86%). 1o Response rate in the US survey is not quoted." In contrast to the present survey, both previous US and Canadian surveysl'0ll were targeted at physiotherapy departments witlh a special interest in respiratory care and thus comparisons regarding provision of a service (in contrast to content of service) are invalid. In conclusion, most of the pulmonary rehabilitation programmes in UK are similar in their format, content and staffing. Only 40%Vo of surveyed hospitals run a pulmonary rehabilitation programme. Despite the high prevalence of COPD-related disability in old age most programmes chiefly included younger subjects and only a small percentage of patients are referred by geriatricianis. Our results suggest that a raised awareness is needed during postgraduate training of geriatricians, general physicians and respiratory phiysicians in the UK regar-ding pulmonary relhabilitation and smoking cessation. The current data will provide a baselinie against which to judge the

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