Primary care research and clinical practice: respiratory disease

Transcription

1 Allergy and Respiratory Researh Group, Centre of Population Health Sienes: GP Setion, University of Edinburgh, Edinburgh, Sotland, UK Correspondene to: Dr H Pinnok, Allergy and Respiratory Researh Group, Centre of Population Health Sienes: GP Setion, University of Edinburgh, 20 West Rihmond Street, Edinburgh EH8 9DX, Sotland, UK; hilary.pinnok@ed.a.uk Reeived 19 May 2008 Aepted 18 Deember 2008 Primary are researh and linial pratie: respiratory disease H Pinnok, A Sheikh ABSTRACT Primary are respiratory researh has ontributed to the evidene base for both the linial are of ommon longterm respiratory onditions and the management of aute respiratory illness. Key areas inlude investigating the role of remote onsultations in ensuring regular professional reviews for people with asthma, understanding and evaluating the use of tehnology to support patient selfare, exploring aspets of the shift of servies for longterm onditions from seondary to primary are, investigating primary are presribing using omputerised databases of anonymised medial reords, and takling inequalities in provision of are for ethni minorities. Further researh will be needed in all these areas as the ongoing and inreasing hallenge of providing support for people with long-term onditions will demand innovative approahes to organisation of are, many of whih will involve or be led by primary are. In the UK, respiratory disease is responsible for more primary are onsultations than any other type of illness. 1 The 24 million respiratory onsultations (an average of 1.8 per patient per year) and 51 million presriptions issued annually enompass both ongoing are for people with long-term onditions, suh as asthma and hroni obstrutive pulmonary disease (COPD), and advising patients with aute, often self-limiting infetions. Underlying these statistis is a substantial mortality and morbidity attributable to respiratory disease. 1 Surveys of people with asthma have onsistently shown unaeptably poor ontrol, assoiated with low expetations on the part of patients, 2 3 and often underestimated by professionals. 4 People with severe COPD have multiple, extensive and prolonged needs, 5 7 with onsiderable soioeonomi impat on the lives of both patients and their arers. 8 There is urrently evidene of a substantial unmet need representing a major hallenge for healthare servies. 7 Pyramids of are, whether in the ontext of hroni disease 9 or aute hest infetions, 10 emphasise the signifiant role of primary are in managing the majority of people with these onditions. High-quality researh, fousing on primary are management, is therefore fundamental to understanding and developing a omprehensive healthare servie for respiratory disease. In 1996, the reognition of this need inspired the General Pratie Airways Group to establish a hair of primary are respiratory mediine based at the University of Aberdeen, whih aims to provide primary are solutions to primary are problems. 11 In ollaboration with olleagues from the subsequently formed International Primary Care Respiratory Group, researh agendas for asthma, COPD, smoking essation, infetious diseases and allergi rhinitis have been developed and desribed. 12 In this review, we disuss five key areas where UK primary are researh has addressed important questions faing primary are (table 1). PROFESSIONAL REVIEWS OF PEOPLE WITH ASTHMA The provision of regular professional reviews to support patients managing their long-term ondition is a key reommendation of asthma guidelines Primary are has responded to this need with pioneering work in the mid-1980s, whih led to the inlusion of asthma linis in the 1990 General Medial Servies ontrat. 17 Suh was the uptake of this initiative that by 1995 Jones and Mullee 18 were unable to identify a ontrol pratie for their randomised trial of nurse-led asthma are. This development of strutured asthma are with a fous on regular preventer treatment may have been one fator in the redution of unsheduled appointments for asthma observed by Fleming et al 19 using data from the General Pratie Researh Database (GPRD). This onlusion, however, must be tempered by the observation that a national survey in 2004 identified ontinuing high morbidity and low expetations among people with asthma. 3 Not all people with asthma want regular review or are willing to attend a prearranged appointment, with the result that annual review rates as low as 30% were, until reently, the norm Primary are researhers have explored a number of approahes to address this problem. Targeting are to symptomati patients was an early solution, using standard morbidity questions, whih later informed the now widely adopted Royal College of Physiian s three questions (RCP 3Qs) Jones et al 23 posted the questions to their patients and invited those with high morbidity to attend the asthma lini, although less than a third responded. Kemple and Rogers 25 showed that inluding a blank asthma ation plan with the lini invitation inreased the response rate from 70% to 82% among patients with asthma using an inhaled steroid. In line with poliy that advoates offering flexible modes of onsultation, 26 a body of work undertaken in primary are has now established a role for telephone onsulting in asthma. 13 Our randomised ontrolled trial undertaken in four UK general praties showed that onduting asthma reviews by telephone inreased the proportion of 74 Postgrad Med J 2009;85: doi: /pgmj

2 Table 1 UK primary are researh Key areas of researh Key ontributions to linial pratie Key areas for future researh Investigating innovative ways to ensure regular professional review of people with asthma Understanding and evaluating the use of tehnology to support patient self-are in asthma and COPD Exploring aspets of the shift of servies for long-term onditions from seondary to primary are, inluding the role of GPwSI Investigating primary are presribing using omputerised databases of anonymised medial reords from general pratie Takling inequalities in healthare and the provision of are for ethni minorities National guidelines now reommend that telephone reviews an ontribute to the provision of flexible support for people with asthma. A key advantage is the opportunity for liniians to initiate reviews with patients who do not respond to invitations Qualitative work and pilot studies suggest that tele-monitoring is welomed by many patients, and has the potential to support the are of people with respiratory disease GPwSIs an ontribute positively to the development of respiratory are in their loality. Effetive pulmonary rehabilitation an be provided in the ommunity by a primary health are team There are onerns about a signifiant minority of adults and hildren with asthma who are presribed inhaled doses in exess of guideline reommendations. Correlation between an inrease in pneumonia deaths and the redution in antibioti presribing raises onerns about how GPs determine the need for antibiotis Both qualitative studies and trials highlight that effetive interventions do not translate diretly aross ethni boundaries. Pratie-based sreening for TB inreases the detetion of ative disease COPD, hroni obstrutive pulmonary disease; GP, general pratitioner; GpwSI, GP with speial interest; TB, tuberulosis. patients reviewed from 48% in the surgery arm to 74% of patients alloated to the telephone arm without loss of linial effetiveness. 27 The shorter duration of the telephone onsultations rendered this a ost-effetive intervention. 28 Feedbak from patients at the end of the trial suggested that telephone onsultations were welomed as a onvenient option when asthma was well ontrolled, whereas, if their asthma was ausing onern, an in-depth fae-to-fae review was onsidered more appropriate. 29 In a randomised trial in their pratie, Gruffydd-Jones et al 30 used a telephone all in whih patients were asked the RCP 3Qs to identify those whose asthma ontrol suggested the need for a fae-to-fae review while offering a onvenient telephone option to those urrently under good ontrol. Using this strategy, they inreased the proportion reviewed from 60% to 81% with no loss of linial ontrol. However, randomised ontrolled trials are ontrived situations whih take no aount of patients preferene, have predetermined entry riteria (albeit relatively broad in these primary are trials; for example, we had no upper age limit and exluded only those who were housebound or unable to partiipate for severe medial or soial reasons 27 ), and only inlude the subgroup of patients who onsent to partiipate (for example, a third of eligible patients agreed to partiipate in our trial 27 ). The Medial Researh Counil s framework for the design and evaluation of omplex interventions thus reommends that findings from randomised trials should be tested in a phase IV implementation trial. 31 Against a bakground of the Quality and Outome Framework of the 2004 General Medial Servies Contrat, whih rewarded the provision of annual reviews for people with asthma, 32 we introdued a telephone asthma review servie within one group of our large pratie. This offered patients the hoie of a fae-to-fae or telephone review and enabled asthma nurses to phone non-responders opportunistially. Using anonymous patient data, we were able to test the impat of this intervention on the whole population of patients with asthma and ompare the outomes with a similar group within the pratie offering the traditional lini-based servie. The provision of a telephone option within the asthma review How an other forms of remote and/or asynhronous onsultation (eg, , text messaging and videophones) ontribute to the are of people with asthma and other longterm onditions? Ongoing trials will generate an evidene base to inform effetive and safe development of monitoring tehnologies. Under what irumstanes, and for whih patient groups, does suh tehnology provide most benefit? What is the impat of initiatives that aim to inrease linial involvement with servie development (suh as Managed Clinial Networks and Pratie-based Commissioning) on loal respiratory are provision? There is a need to develop interventions and test new models of are for people with severe COPD Effetive implementation of guidelines remains a hallenge, and better evidene-based strategies are required. How an GPs target antibiotis to those most likely to benefit, thereby allowing them to redue antibioti presribing safely? How to develop models of are to meet the needs of ethni minorities remains an unresolved issue servie inreased the proportion reviewed from 54% to 66% (about half the effet size seen in the randomised trial). 33 Although a fifth of patients hose a telephone review, offering a hoie of mode of onsultation did not inrease patientinitiated appointments; however, it did enable liniians to initiate reviews with patients who did not respond to review invitations. Asthma ontrol was similar in both groups, but enablement and onfidene in asthma management was greater in the telephone option group, reinforing the importane of regular review in supporting self-are. 34 On the basis of this work, telephone reviews are now seen by patients as ontributing to the flexible support to enable them to are for their asthma, and are reommended as an option in national guidelines. 13 However, in the (very near) future the rapid expanse of ommuniation tehnology will demand that we understand how safely to use other forms of remote onsultation inluding, for example, or text messages. SUPPORTING PATIENT SELF-CARE Communiation tehnology is inreasingly seen as a means of enabling supported self-monitoring. For example, mobile phonebased monitoring with supporting biofeedbak, appears able to engage patients in their management, resulting in high levels of adherene and patient aeptability, with many patients weloming the innovative are. 37 The theoretial model developed by Glasziou et al 34 desribes the omplementary and evolving roles of periodi professional reviews and ongoing patient self-monitoring, iting asthma selfmonitoring as a well-defined exemplar of this onept. Our reent qualitative study suggests that people with asthma pereive a role for mobile tehnology in aiding transition from liniian-supported phases during whih ontrol is gained to effetive self-management during maintenane phases. 38 An ongoing randomised ontrolled trial evaluating mobile phonesupported self-management in people with asthma is urrently testing this hypothesis. 39 COPD is a leading ause of hospital admissions. 40 Underpinned by evidene that patient reognition of COPD exaerbation symptoms followed by prompt treatment improves reovery, redues hospitalisation risk, and is assoiated Postgrad Med J 2009;85: doi: /pgmj

3 with improved quality of life, 41 tele-monitoring of high-risk patients is already being implemented in some regions to support admission-avoidane shemes. International pilot work supports this approah, showing 20 36% fewer admissions, a 55% redution in bed days and replaement of some nursing visits by telephone onsultations informed by telemonitoring As part of an ongoing, primary are-based programme of work, a randomised ontrolled trial will provide evidene of the linial and ost effetiveness of this innovation in COPD. 47 Against a bakground of government poliy ommitted to developing information tehnology, 48 suh solutions to the hallenges of providing are are likely to inrease and evolve rapidly as tehnology advanes and the tehnologial literay of both liniians and patients inreases. There will be an ongoing need to generate an evidene base to inform effetive and safe development. SHIFT FROM SECONDARY TO PRIMARY CARE In the UK, a onsistent priority for NHS reform over the last deade has been the shift from provision of hospital-based aute are to proative are delivered in the ommunity Primary are researh has ontributed to developing an evidene base to inform a number of aspets of this reform. Pulmonary rehabilitation has an established role in improving exerise tolerane and quality of life for people with COPD. Jones and olleagues have pioneered the development of ommunity-based pulmonary rehabilitation for people with COPD, demonstrating in pilot work that a low-intensity form of pulmonary rehabilitation performed by the primary health are team was feasible and well reeived, 54 and helping to define best pratie. 55 A partiular fous of their work has been the information needs of patients with COPD. 56 Guidelines emphasise the importane of providing multidisiplinary supportive are for people dying from COPD, but highlight the pauity of evidene to inform deisions. 57 Primary are studies have ontributed to the emerging piture of disabling symptoms, partiularly shortness of breath, resulting in severe impairment of quality of life and ativities of daily living and inadequate provision of holisti are General pratitioners (GPs) aknowledge the importane of disussing prognosis, although unertainty surrounding prognosis makes this diffiult in pratie, and few people with end-stage COPD are offered an opportunity to disuss prognosis and make deisions about their end-of-life are. As ongoing studies further eluidate the issues, 62 there is a need to develop interventions and test new models of are. The onept of GPs with a Speial Interest (GPwSIs) was initially introdued in the UK to redue waiting lists in speifi speialities. 49 The General Pratie Airways Group has, however, been influential in reognising the potential of primary are pratitioners to have an important strategi, eduational and linial role in the delivery of speialist are for people with long-term respiratory diseases. 63 Primary are researh has ontributed to the understanding of the multifaeted roles of respiratory GPwSIs, and reently published work has provided further insights into how primary are organisations reonfigure their workfore to provide servies for people with long-term respiratory disease Provision of ommunity-based pulmonary rehabilitation and leading the development of loal servies for people with severe COPD are pratial examples of the GPwSI role. INSIGHTS FROM PRIMARY CARE DATABASES Computerised medial reords have been the norm in primary are for two deades, with the overwhelming majority of GP praties in the UK now reording diagnosti and presription data eletronially. Consultation reords and linial data are entered on the omputer using searhable Read odes, and virtually all presribing in primary are is done eletronially offering potential for the understanding of real-world are using omputerised databases of anonymised medial reords from primary are. Important examples inlude the GPRD, whih offers 35 million patient-years of validated data olleted from 450 UK general praties with over 15 years of reords for individual patients ( and the similar IMS Health UK Mediplus GP database ( imshealth.om), DIN-Link ( and QRESEARCH ( Despite limitations, inluding the potential for omissions and inauraies in routinely olleted data, 69 there are important advantages in examining suh routine data, as it reflets pragmati influenes on the behaviour of both liniians and patients aross the whole spetrum of linial and psyhosoial situations The pereived wisdom that observational studies overestimate treatment effets has been hallenged, 72 and it is suggested that ohort studies based on suh databases an usefully onfirm (or question) the findings of randomised trials supporting generalisability to a broad range of patients and ontexts. 70 As reported below, Prie and olleagues have used primary are databases to explore a number of key issues related to presribing for respiratory onditions. Over the last deade, guidelines have emphasised the safety of inhaled steroids in moderate doses, but have reommended a eiling on the dose of inhaled steroids, preferring the addition of a long-ating b agonist (or other add-on therapy) Analysis of DIN-Link data in 2003 raised onerns that a quarter of adults with asthma were being presribed high-dose inhaled steroids, only twothirds of whom were onurrently being presribed add-on therapy as reommended by guidelines. 73 Calulation of the average daily dose over a year onfirmed these figures and identified 3.5% of the patients who were reeiving doses above liensed use. There have been a few, high-profile, ases of adrenal insuffiieny in hildren reeiving exessive doses of flutiasone, 74 so the observation from a similar study in hildren that 4% of pre-shool hildren and 5% of hildren were reeiving doses equivalent to over double the reommended maximum dose of inhaled steroid is onerning. 75 Only a third of hildren on high-dose inhaled steroids reeived added-on therapy. The author s onlusion that their study highlights the over-use of high-dose inhaled ortiosteroids, the under-use and inappropriate use of add-on therapy, and the use of very high and potentially dangerous doses of inhaled ortiosteroids in a minority of hildren is therefore important. Ekins-Daukes et al, 76 in an analysis of data from Sottish general praties, added a further dimension by alulating the total steroid load inluding nasal steroids in hildren with asthma and suggested that two-thirds of hildren on both treatments may be reeiving exessive doses. Epidemiologial, pathophysiologial and linial studies strongly suggest a relationship between rhinitis and asthma, with surveys in primary are suggesting that 50 75% of people with asthma have symptoms of rhinitis Many people with rhinitis self-mediate, 79 but data from the IMS Health UK Mediplus GP database suggested that adults and hildren with asthma who seek medial advie for their rhinitis inur greater 76 Postgrad Med J 2009;85: doi: /pgmj

4 Key referenes Pinnok H, Bawden R, Protor S, et al. Aessibility, aeptability and effetiveness of telephone reviews for asthma in primary are: randomised ontrolled trial. BMJ 2003;326: Elkington H, White P, Addington-Hall J, et al. The healthare needs of hroni obstrutive pulmonary disease patients in the last year of life. Palliat Med 2005;19: Williams S, Ryan D, Prie D, et al. General pratitioners with a speial linial interest: a model for improving respiratory disease management. Br J Gen Prat 2002;52: Prie DB, Honeybourne D, Little P, et al. Community-aquired pneumonia mortality: a potential link to antibioti presribing trends in general pratie. Respir Med 2004;98: Griffiths C, Foster G, Barnes N, et al. Speialist nurse intervention to redue unsheduled asthma are in a deprived multiethni area: the east London randomised ontrol trial for high risk asthma (ELECTRA). BMJ 2004;328: presription harges and experiene more GP attendanes and hospital admissions than those with asthma alone. These findings have ontributed to the inreasing interest in a unified approah to managing these two onditions, as promoted by the Allergi Rhinitis and its Impat on Asthma initiative, 82 and now reommended by guidelines. 83 In keeping with worldwide efforts to redue inappropriate antibioti presribing, data from the IMS Health UK Mediplus GP database show a 30% deline in antibioti presribing for lower respiratory trat infetions between winter 1994/5 and 1999/2000. Conerningly, however, omparing these data with deaths from pneumonia revealed a strong orrelation (R 2 = 0.85) between an inrease in pneumonia deaths and the redution in antibioti presribing. 84 Further support for this onern is provided by an analysis of the GPRD, whih showed that the risk of a diagnosis of pneumonia after a GP had oded a diagnosis of a hest infetion was partiularly high in elderly people and was substantially redued by antibioti use, with a number needed to treat of 39 for those aged > Reognising the rare, but important, diagnosis amid the ommon presentations is a familiar hallenge for primary are liniians. The detetion of pneumonia in general pratie is diffiult, with no symptoms or signs reliably inluding, or exluding, the diagnosis The authors highlight the need for more evidene to inform GPs how to target antibiotis to those likely to benefit, allowing them to redue antibioti presribing safely. TACKLING INEQUALITIES Primary are researh onduted in the east end of London has highlighted the hallenges of providing respiratory are to deprived multiethni ommunities. Conerned that admission rates for South Asians were triple that for white patients, 87 Griffiths and olleagues 88 reruited people with asthma who had attended an aident and emergeny department or been admitted with asthma in Tower Hamlets, one of the most deprived boroughs in east London. Speialist nurses provided outreah eduation for the praties and reviewed the patients, assessing their are and providing self-management eduation. Although the intervention delayed the time to first presentation with aute asthma, there was a trend towards greater benefit for white patients, ehoing the findings of Moudgil and Honeybourne 89 in a previous primary are study in Birmingham. Qualitative work has provided insight into these findings, highlighting differenes in the way South Asian and white patients ope with their asthma. 90 South Asians had less onfidene in their GP and often turned to family for advie in dealing with an exaerbation. They had less understanding of the role of preventive mediation or the use of oral steroids in an exaerbation. However, some antiipated fators (suh as language barriers, soioeonomi differenes) did not appear to be signifiant. Organisation of are varied substantially between praties in this deprived inner ity area, with some praties enouraging speialist nurses to at autonomously, whereas others left the nurses feeling marginalised and onsequently unable to ontribute produtively 91 In order to address some of these issues, Griffiths et al 92 developed and tested a ulturally adapted lay-led self-management programme for Bangladeshi adults with a range of hroni diseases inluding asthma. The programme improved selfeffiay and self-management behaviour, but did not have a signifiant effet on use of healthare. How best to adapt existing models of are to meet the needs of South Asian people with asthma therefore remains an unresolved issue. The inreasing inidene of tuberulosis, espeially in migrant populations, has raised interest in appropriate sreening proedures. Qualitative interviews with immigrants onfirm the aeptability of sreening and suggested that, to maximise uptake, sreening should be provided in a variety of settings, inluding primary are. 95 In a subsequent luster randomised ontrolled trial, an outreah programme promoted sreening for tuberulosis in patients registering with praties in Hakney, and inreased the detetion of ative tuberulosis. 96 CONCLUSIONS Primary are respiratory researh has ontributed to the evidene base for both the linial are of ommon long-term respiratory onditions and the management of aute respiratory illness. The inreasing hallenge of providing support for people with long-term onditions will demand innovative approahes to organisation of are, many of whih will involve or be led by primary are. Further researh is needed in all these areas. MULTIPLE CHOICE QUESTIONS (TRUE (T)/FALSE (F); ANSWERS AFTER THE REFERENCES) 1. Innovative ways to ensure regular professional review of people with asthma A. Nurse-led asthma are has been shown in randomised ontrolled trials to result in a redution in unsheduled appointments B. About a third of people with asthma will respond to an invitation to attend for a routine review C. Conduting asthma reviews by telephone inreased the proportion of patients reviewed from a half to threequarters ompared with surgery reviews D. The Quality and Outome Framework of the 2004 GMS Contrat rewards the provision of 6-monthly reviews for people with asthma E. Offering an asthma review servie that inluded a telephone option inreased enablement and onfidene in asthma management Postgrad Med J 2009;85: doi: /pgmj

5 2. Organisation of are for long-term onditions A. The main role of general pratitioners (GPs) with a speial interest in respiratory are is to provide a linial referral servie B. Unertainty surrounding prognosis of hroni obstrutive pulmonary disease (COPD) is a key barrier to offering people with end-stage COPD an opportunity to disuss end-of-life issues C. Pulmonary rehabilitation improves lung funtion for people with COPD D. Pulmonary rehabilitation for people with COPD an be provided by the primary health are team in the ommunity E. Mobile phone-based monitoring of asthma is assoiated with high levels of adherene and patient aeptability 3. Using omputerised databases of anonymised medial reords from general pratie A. Cohort studies based on routinely olleted data an support the generalisability of randomised ontrolled trial evidene to a broad range of patients and ontexts B. Over the ourse of a year, a quarter of adults presribed inhaled steroids are reeiving doses above liensed use C. Over 50% of people with asthma have symptoms of rhinitis D. One in 39 people over the age of 65 diagnosed by their GP with a hest infetion atually has pneumonia E. In 2000, only 30% of people who onsulted their GP with a lower respiratory trat infetion were presribed antibiotis 4. Takling inequalities in healthare and the provision of are for ethni minorities A. Admission rates for South Asians with asthma were triple that for white patients B. Speialist nurse interventions redued time to admission equally in both South Asians and white patients C. Language barriers and soioeonomi differenes were important fators in how South Asian patients oped with their asthma D. Lay-led self-management programmes for Bangladeshi adults improved self-effiay and self-management behaviour E. Involvement of inner ity general praties in sreening for tuberulosis in newly registered patients inreased the detetion of ative tuberulosis Aknowledgements: HP is supported by a Primary Care Researh Career Award from the Chief Sientist s Offie, Sottish Government. We thank Professor David Prie, Professor Chris Griffiths and Dr Rupert Jones for their helpful advie on an earlier draft of this review. Competing interests: None. REFERENCES 1. British Thorai Soiety. Burden of lung disease. 2nd edn. London: British Thorai Soiety, Smith NM. The Needs of people with asthma survey and initial presentation of the data. Asthma J 2000;5: Haughney J, Barnes G, Partridge M, et al. The Living & Breathing study: a study of patients views of asthma and its treatment. Prim Care Respir J 2004;13: Juniper EF, Chauhan A, Neville E, et al. Cliniians tend to overestimate improvements in asthma ontrol: an unexpeted observation. Prim Care Respir J 2004;13: Skilbek J, Mott L, Page H, et al. 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