Improving care for COPD: Implementing NICE Quality Standard 10, Statement 2 (People with COPD have a current individualised comprehensive management plan, which includes high-quality information and educational material about the condition and its management, relevant to the stage of disease.)
December 2014 Commissioned by
North East Quality Observatory System on behalf of the Collaborating for Better Care Partnership Report by
Jean Brown
Tel: 0191 2523837 E-mail:
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NEQOS – operated under a joint agreement between Northumberland, Tyne and Wear and South Tees Hospitals NHS Foundation Trusts
COPD: implementing NICE Quality Standard 10, Statement 2
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Contents 1 2 3
Introduction .............................................................................................................. 3 The gap between current and best practice: what is the gap? ..................................... 4 Delivering effective actions to reduce the gap ............................................................ 5 3.1 3.2 3.3
4
Self-management and education ................................................................................... 5 Encouraging exercise and lifestyle change (including stopping smoking) ......................... 6 Use of telehealth and telemedecine............................................................................... 6
Addressing the barriers to implementation ................................................................ 8 4.1 Introducing telehealth ................................................................................................... 8 4.1.1 Barriers for health services ............................................................................................. 8 4.1.2
Barriers for patients ......................................................................................................... 8
4.2 Delivering or enhancing self-management programmes ................................................. 8 4.2.1 Barriers for health services ............................................................................................. 9 4.2.2
Barriers for patients ......................................................................................................... 9
4.3 Delivering exercise programmes .................................................................................. 10 4.3.1 Barriers for patients ....................................................................................................... 10 4.4 4.5
Use of social media ..................................................................................................... 10 An holistic and multi-disciplinary approach .................................................................. 10
5 The potential impact on patient outcomes ............................................................... 11 6 Cost-effectiveness ................................................................................................... 12 7 Emerging recommendations for the NHS around self-management .......................... 12 References ..................................................................................................................... 14
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Introduction
1
A literature review was carried out to identify, reference and summarise the current evidence base regarding the delivery of effective interventions relating to Chronic Obstructive Pulmonary Disease (COPD) care in the NICE Quality Standard 10 Statement 2: People with COPD have a current individualised comprehensive management plan, which includes high-quality information and educational material about the condition and its management, relevant to the stage of disease.
This report presents the findings of the review, focusing on the following key elements:
The gap between current and ‘best’ practice; Addressing barriers to implementation. (Barriers include obstacles preventing the patient from participating and factors affecting the professionals’ ability to implement something.); The potential impact on patient outcomes; Cost effectiveness; Emerging recommendations for the NHS.
In the interest of brevity, the search strategies/histories and complete findings are not included in this report but can be requested from NEQOS. Much research has focused on pulmonary rehabilitation1 (which is also separately addressed in the Quality Standard.) The separate elements of self-management, exercise and education have also been studied in depth. Because of the significant overlap between the elements and the way programmes are delivered to patients, this report includes some results relating to pulmonary rehabilitation in general and some relating to exercise and education as well as those specifying ‘self-management’. This report is one of a series of four NEQOS reports, covering a range of the Quality Statements in NICE Quality Standard 10. (The other three consider the following aspects: medication in primary care, non-invasive ventilation in hospital and appropriate palliative care.)
1
Pulmonary rehabilitation is a package consisting of self-management, exercise and education.
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The gap between current and best practice: what is the gap?
2
An NHS Companion Document sets out how the NHS can deliver against the Outcomes Strategy for COPD and Asthma. The NHS COPD Commissioning Toolkit: A resource for commissioners, states that the Companion Document has: set out the key areas for improving the quality of care for people with COPD, including using quality-assured spirometry and assessment, providing pulmonary rehabilitation, carrying out home oxygen assessment and review, and managing exacerbations. There is strong evidence that these interventions help to reduce mortality, improve quality of life and recovery, improve patient experience and improve patient safety – so are relevant to all five domains of the NHS Outcomes Framework. We know from the National COPD Audit and other research that the provision, quality and take-up of these services is variable across England. National and European COPD Audits and World Health Organization data show, among other things, that, as well as the UK’s death rates being higher than European average death rates:
Less than a third of England’s COPD sufferers have been diagnosed. Some areas of England see four times as many emergency admissions due to COPD than other areas. If the whole NHS were to deliver services in line with the best, around 7,500 lives could be saved each year.
A 2012 European COPD audit1 expressed concerns over suboptimal treatment of the disease. It referred to the findings of several studies suggesting that over 90% of eligible patients did not join a pulmonary rehabilitation programme. Another 2012 audit (BTS)2 found that although stopping smoking is the most cost-effective treatment for COPD, fewer than 30% of the third of COPD sufferers who smoke had been referred for smoking cessation. However, the BTS Audit also found that the majority of patients were now offered Pulmonary Rehabilitation. Despite overwhelming evidence, self-management support is still not being implemented into routine clinical practice3.
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Delivering effective actions to reduce the gap 3.1 Self-management and education
Mastering effective breathing and sputum clearance techniques are essential for patients with COPD4 and, as Bourbeau suggests5 , ‘rather than telling the patient to learn to live with their disease, they should be taught to self-manage’. Planned inhaler training has been found to decrease attack frequency and dyspnoea and improve quality of life6. The ‘teachback’ technique, used as an educational intervention for teaching COPD patients to use a respiratory inhaler, has been shown to increase significantly the proportion of patients using inhalers correctly7. Brief nurse-led interventions can significantly increase self-care adherence to medication8. Japan has been successfully using a network of certified community pharmacists to deliver correct inhalation techniques, significantly reducing the frequency of exacerbations and increasing medication adherence9. Brief nurse-led interventions can lead to a reduction in respiratory problems8. A lay and clinician-led COPD self-management programme has the potential to produce improvements in important outcomes such as activation, mastery and self-management abilities10. Both patient knowledge and clinical indicators can improve11 and the patient can feel empowered12. From the English GP patient survey, it is known that ‘doctor communication most influences people’s overall level of satisfaction with general practice’13, helping to reduce stress and to make patients feel enabled. Linked with good communication is good two-way communication, as there is evidence that patients want more involvement in making decisions about their care13, so that doctors need to listen as well as talk. Many patients wish to be supported to self-manage13. Successful interventions in supporting self-management include: health promotion; health coaching/counselling; education activities; use of smartphone apps for behaviour change; improving health literacy.13 The evidence is as yet not conclusive for the use of computerised clinical decision support systems for chronic disease management but one study found that a small majority (just over half) of such systems improved care processes in chronic disease management and some improved patient health13,14. Although one 2006 study15 found that self-management plans made no difference to quality of life or health outcomes, the inclusion of action plans within some self-management programmes have been found to be successful in reducing hospitalisations16,17. A Cochrane review18 found that there was evidence that action plans with limited COPD education aid recognition of, and response to, an exacerbation with initiation of antibiotics and corticosteroids. However, it found no evidence of reduced healthcare utilisation or improved quality of life and went on to say that ‘the practice of giving patients an action NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 5
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plan and limited self-management education for the management of COPD exacerbations, without a multi-faceted self-management program or ongoing case management cannot be recommended as the standard of care in COPD’. 3.2 Encouraging exercise and lifestyle change (including stopping smoking)
Both exercise and self-management are advocated in pulmonary rehabilitation for people with COPD19. Self-management programmes that address behaviour can increase selfreported exercise even when exercise is not a programme component19, 20. Four years after one nurse-led self-management programme21, participants had maintained their exercise capacity and two out of three participants had continued to exercise regularly. Moderate exercise using a virtual game system (e.g. Wii or Nintendo) has been found to be safe, feasible and enjoyed as an adjunct to inpatient pulmonary rehabilitation and might encourage patients to maintain physical activity after pulmonary rehabilitation 22. Structured programmes with self-care education have been found to be effective in motivating patients to change lifestyles23, which might include both exercise uptake and smoking cessation. Encouraging patients with COPD to stop smoking is one of the most important components of their management and all COPD patients, regardless of age, should be encouraged to stop, and offered help to do so, at every opportunity24. 3.3 Use of telehealth and telemedecine
A 2011 Cochrane Review of telehealthcare for COPD25 found that telehealthcare in COPD appears to have a possible positive impact on the quality of life of patients and a reduction in the number of times they attend the emergency department and the hospital. The Department of Health’s headline findings (2011) for the Whole System Demonstrator Programme26 state that: the early indications show that if used correctly telehealth can deliver a 15% reduction in A&E visits, a 20% reduction in emergency admissions, a 14% reduction in elective admissions, a 14% reduction in bed days and an 8% reduction in tariff costs. More strikingly they also demonstrate a 45% reduction in mortality rates. (This latter finding contradicts a 2010 Canadian systematic review which found an increased mortality rate in a telephone support group27, though it also found reduced hospitalisation rates and concluded that home telehealth interventions were similar or better than usual care for quality of life and patient satisfaction outcomes.) In a telerehabilitation programme, well-managed interaction between patient (at home) and healthcare professionals (at, for example, a clinic) can lead to new relationships and improved learning processes28. NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 6
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Early intervention with antibiotics and steroids can prevent admissions, but it can be difficult for patients to recognize the early signs of exacerbation and to access timely clinical care. There might be less benefit to use with patients whose COPD is stable29. One solution to these barriers to early management is the use of telemonitoring of symptoms and physiological signs30. A range of telemedicine possibilities exists: medical consultations, in-home patient monitoring and remote rehabilitation. Teleconsultations can save time and travel costs for patients, with only a few still needing face-to-face consultations31. A nurse-initiated telephone follow-up programme was found to be effective in increasing self-efficacy in managing dyspnoea32. Tele home monitoring-based telenursing has been found to decrease significantly exacerbations and the use of healthcare services, with no effect on mortality33. In one study, telemonitoring was shown to have a positive effect on the quality of life of COPD patients34 but showed no evidence of reduced service utilisation. However another study showed that telemonitoring with daily spirometry led to a reduced number of hospitalisations35. Telehealth strategies that promote rehabilitation and early detection of an acute exacerbation have reduced hospital admission rates in people with severe and very severe COPD36. Weekly or monthly telephone calls and unscripted telephone coaching interventions appear to be most effective for improving self-management skills in people from vulnerable groups37. Although the use of real-time video telehealth (e.g. Skype) is relatively new, there is emerging evidence that it can reduce dyspnoea and can also lead to improved social support38. A programme using telerehabilitation equipment (exercise bicycle, tablet computer with webcam and a pulse oximeter visible while teleconferencing) was found feasible for people with COPD, with patients showing significant improvement in the 6-minute walk distance and dyspnoea39. A COPD telerehabilitation service comprising exercise training at home, telemonitoring and education/self-management led to reduced hospital costs, with no participants dropping out in over a year40. Pulmonary rehabilitation (PR) delivered via telehealth, with education sessions delivered on two days a week, was found to be an effective tool for increasing COPD pulmonary rehabilitation when there was insufficient PR capacity, leading to improvements in quality of life and exercise capacity comparable with standard PR41. Although there have been studies suggesting that telemonitoring was not effective in postponing admissions42, many find that home-based telemonitoring has led to reduced hospital days and outpatient visits43,44 and improved health related quality of life45. Real-time interactive voice and video telehealth (e.g. using Skype) has been found to be a feasible approach for teaching pursed-lips breathing in COPD, leading to improved social support and decreased dyspnoea38. NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 7
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Addressing the barriers to implementation 4.1 Introducing telehealth
Barriers for health services The introduction of telehealth into the healthcare setting has been recognized as a service that might be experienced as disruptive or even threatening. However this can be overcome by employing simple yet effective measures such as: providing timely, appropriate and context specific training; provision of adequate technical support; and procedures that allow a balance between the use of telehealth and personal visit by nurses delivering care to their patients46. Staff involvement is essential in service redesign where telehealth is to be implemented47. 4.1.1
The Nuffield Trust48 considered two possible impacts of teleheath on GP contacts: on the one hand, telehealth may lead to fewer contacts with the GPs as patient health is better controlled and there is less need for checking and monitoring – a reduction in demands on GPs; conversely there could be a problem that more monitoring may lead to greater anxiety in patients, coupled with some ‘false alarms’ that increases the number of times they call upon their GP. They found that there was no change in contacts. It was also noted that the technology used in this trial did not allow routine sharing of information between the telehealth technology and GP records – something that should probably happen in an ideal world of integrated information systems. Barriers for patients There might be a difference between patients who adopt telehealth techniques and those who do not: greater disease severity might impact on patients’ ability to use it49. The personal approach advocated should help to address this. The importance of risk stratification has been stressed50. One review makes the point that there is as yet so much variation among studies that it is difficult to generalise results51. Another study52 suggests that there might not be reduction in healthcare utilisation if patients are already receiving comprehensive respiratory care. 4.1.2
Concerns that older people might have difficulties with mobile telehealth-based applications appear to be have been allayed. It has been found that patients are able to use the application, interpret clinical data, and use these within their self-management approach regardless of previous knowledge53,54. 4.2 Delivering or enhancing self-management programmes
It is recognized that most individuals with COPD use several strategies to cope with their disease but health-care professionals need to ensure that evidence-based guidelines for COPD are translated to patients55,56,57. NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 8
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Barriers for health services Lack of time of professionals has been mentioned as a barrier3,66. A potential ensuing saving in time in GP contact, along with the savings in hospitalisations, could be offset against this. There are also specifically developed programmes available, so there is no need for staff to develop them themselves. The Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease (SPACE for COPD) manual was developed as the focus of a comprehensive self-management approach facilitated by health care professionals and has been shown to contribute significantly to improvements in exercise capacity and breathlessness58, 59,60. Similarly a ‘self-regulation protocol’ significantly assisted participants to control their individual symptoms (improved peak expiratory flow) and avoid acute exacerbation (lower rate of unscheduled physician visits)61. Motivational Interviewing and Mindfulness for Health programmes have been found helpful in promoting behaviour change in COPD self-management programmes62. 4.2.1
To save health professionals’ time, group sessions can sometimes be used. Simple education programmes aimed at large numbers of low risk patients (who might in time become high risk) might reduce the rate of breathing-related hospitalisation63. Some professionals might be aware that a minority of studies appear to show increased mortality associated with self-management in COPD64,65. Reasons have not been confirmed (and research into this is said to be much needed) but is thought possible that the high risk patients involved might have needed earlier professional assessment or that selfmanagement led to overconfidence and treatment delays. Appropriately delivered selfmanagement training, including an individual approach, might ensure that this outcome does not occur. Lack of training among staff in a practice is also a barrier to successful implementation3, one which needs to be addressed. Again, the potential savings in hospitalisations can be offset against this. Barriers for patients Low literacy skills are associated with a variety of poor health outcomes and this might be a particular problem for patients with COPD who need to use inhalers appropriately. As well as literacy, cognition, intelligence, language and cultural barriers have been identified in some cases66,67. Overcoming these will need consideration of a patient’s levels of these. A literacy-sensitive self-management intervention can lead to improvements in inhaler technique, maintaining quality of life and avoiding exacerbations68,69,70. The personal or individual approach is recommended by many writers, concluding that frequent interaction, ‘health mentoring’, ‘hands-on guidance’ or nursing interventions based on individualised counselling are most likely to improve self-management and quality of life71, 72,73, 74,75,76,77. 4.2.2
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These approaches might also be useful in terms of variation in patients’ attitudes over time: patients might feel differently about training depending on their physical and emotional state as they perform it78,79. Patients also experience self-monitoring in different ways (encouraging, reassuring, depressing, worrisome or sometimes disturbing)80 so the personal approach from health professionals can ensure that this is a beneficial activity. Community-based physiotherapeutic exercise progammes can be successfully incorporated into COPD self-management programmes to improve exercise capacity and to improve actual daily activity81. 4.3 Delivering exercise programmes
Barriers for patients Barriers to people with COPD exercising have been found to be the weather, followed by health problems and lack of intrinsic motivation, potentially overcome by increasing insight into health benefits, tailoring the type of activity and improving self-efficacy82. Exercise training programmes are effective in improving exercise capacity, particularly when they also target behaviour change83. 4.3.1
4.4 Use of social media
Although there has been, as yet, limited published evidence, studies have suggested that COPD education via YouTube could benefit patients. However, existing videos vary in content and quality, which might deter professionals from recommending them. To avoid missing out on the opportunity, professionals should direct patients to those produced by appropriate qualified medical professionals84. 4.5 An holistic and multi-disciplinary approach
An holistic approach is much recommended, with a focus on living with the condition and its effects on life as a whole85,86,87. This should include focusing on the patients’ fears associated with the uncertainty and progression of their disease88,89. An educational approach alone is insufficient; changes in behaviour are also required87,90. Any approach to self-management must include attention to the patient’s family situation 86 and social support91, including the perceptions of COPD by the family92 and the potential influence of care-givers (especially spouses, who have been found to improve adherence in COPD93. There are examples of respiratory nurses focusing mainly on quitting smoking but advice is to widen this – to provide information on nutrition and exercise and to help patients to build confidence and become partners in the decision-making process94. It is recognized that there needs to be collaborative care between patients and health providers to promote good self-management16,73,95,96,97,98,99. The Health Foundation suggests NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 10
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that the process of collaborative working100 in care planning involves finding out what is important to the patient, identifying the best treatment and supporting the patient in developing goals and deciding on the actions to achieve those goals.
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The potential impact on patient outcomes
Whereas section 3 focused on different approaches and their effects, in this section we summarise the impacts from the patient’s perspective:
Self-management and education programmes, including planned inhaler training, lead to: o Improved quality of life (e.g. health-related quality of life as measured by the St. George’s Respiratory Questionnaire (SGRQ)2)109, 111,101,102, 103,104,105,111. o Reduced frequency of attack111 o Reduced dyspnoea as measured by the Medical Research Council (m)MRC111 o Increased empowerment and coping skills o Reduction in respiratory- related hospital admissions73,99, 106,107,108,109, 110,111. o High levels of self-efficacy, in turn associated with improvements in healthrelated quality of life, lower levels of breathlessness, lower levels of anxiety and lower levels of depression in COPD patients (although one study found no association between high self-efficacy and exacerbation rates112 ). There is also greater level of understanding of the illness with higher self-efficacy and those with COPD might be empowered by being able to use cognitive coping skills113,114. o Programmes might also help to reduce depressive symptoms115,104. Examples include: a one-year COPD programme with 30 hours of education and 16 hours of physical activity, following which there was a significant improvement during the intervention21; a brief nurse-led self-management intervention, which led to improvements in health-related quality of life8.
2
Self- management programmes with exercise component lead to o Improved exercise capacity Pulmonary rehabilitation leads to o improved exercise capacity116 o reduced dyspnoea116 o psychological well-being116 o long term as well as short term benefits116.
Many studies measure health-related Quality of Life (HRQoL). Some use EuroQol (EQ-5D)
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Exercise programmes lead to improved exercise capacity. For example, COPD patients who undertake an activity equivalent to walking 60 minutes a day halve their risk of being admitted as an emergency admission irrespective of their severity, nutritional status or respiratory rehabilitation117 Exercise and lifestyle programmes, including stopping smoking, leads to o Reduced respiratory-related unplanned hospitalisation Use of teleconsultations leads to o Reduced visits to primary care o Saving time and travel costs Self-management and routine monitoring can lead to patients becoming more capable of appropriately managing exacerbations118.
Cost-effectiveness
Pulmonary rehabilitation has been found to be the most cost-effective treatment in severe disease119. Stop smoking interventions are highly cost effective for those with mild-to moderate COPD and are the most effective for those with undiagnosed COPD 119. Exercise programmes are very cost-effective for mild-moderate COPD sufferers119. Chronic respiratory patients requiring oxygen or home mechanical ventilation experience frequent exacerbations and hospitalisations with related costs120. Tele-assistance for COPD patients has been shown to reduce hospitalisations, urgent GP calls and exacerbations, along with associated costs120,121. Although one 2004 study122 suggested that COPD self-management programmes were not cost efficient for moderate to severe COPD patients who rate their health-related quality of life relatively high, there are many more examples in which COPD self-management education programmes have been shown to be cost-effective, reducing the levels of hospitalisation109,4,123,103,40. The effectiveness is greater as caseloads increase and is likely to become more pronounced as hospital costs rise124. Economic analysis103,125 suggests that with thresholds of 20,000125 or 10,000103 per quality-adjusted life-year gained, selfmanagement interventions are likely to be cost-effective, potentially meeting NICE costeffectiveness criteria.
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Emerging recommendations for the NHS around self-management
Taking self-management in its widest sense, the following summarises the recommended actions derived from the findings outlined above: NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 12
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Create a self-management plan to be used alongside a multi-faceted self-management program. Educate patients with COPD about: o effective inhaled therapy o exacerbation, including recognition of severity of symptoms Promote (and provide) pulmonary rehabilitation to all who need it. Educate all patients with COPD about the benefits of o stopping smoking – and offer appropriate help at every opportunity. o Exercise – and ensure progammes or opportunities are available. Use an holistic approach – taking into account all aspects of the patient’s life and circumstances. Work with patients with COPD and their families in a collaborative manner. Ensure programmes are tailored to address literacy, cognition, intelligence, language and cultural barriers. Use telehealth where possible.
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References
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European Respiratory Society (2012) An international comparison of COPD care in Europe: results of the first European COPD audit 2 British Thoracic Society (BTS) COPD Discharge Audit 2012 (national audit period 1 April –31 May 2012) 3 Roberts, N., Younis, I., Kidd, L. (2013) Barriers to the implementation of self management support in long term lung conditions. London Journal of Primary Care, ,vol./is.5/(13-25) 4 Tsang H.C. et al. (2013) Using a novel scoring system to evaluate the effectiveness of self-care education in patients with chronic obstructive pulmonary disease (COPD). Respirology, November 2013, vol./is.18/(180) 5 Bourbeau J. (2004) Self-management interventions to improve outcomes in patients suffering from COPD. Expert Review of Pharmacoeconomics and Outcomes Research, February 2004, vol./is. 4/1(71-77) 6 Goris,S., Tasci, S., Elmali, F. (2013) The effects of training on inhaler technique and quality of life in patients with COPD. Journal of aerosol medicine & pulmonary drug delivery, December 2013, vol./is. 26/6(336-44) 7 Dantic, D.E. (2014) A critical review of the effectiveness of 'teach-back' technique in teaching COPD patients self-management using respiratory inhalers. Health Education Journal, 0017-8969 (Jan 2014) 8 Song, H.-Y., Yong, S.J., Hur, H.K.(2014) Effectiveness of a Brief Self-Care Support Intervention for Pulmonary Rehabilitation among the Elderly Patients with Chronic Obstructive Pulmonary Disease in Korea. Rehabilitation Nursing, May 2014, vol./is.39/3(147-156) 9 Takemura, M. et al. (2013) Effect of a network system for providing proper inhalation technique by community pharmacists on clinical outcomes in COPD patients. International Journal of Chronic Obstructive Pulmonary Disease, 2013, vol./is.8/(239-44) 10 Turner, A.P., Anderson, J.K., Wallace, L.M., Kennedy-Williams, P. (2014) Evaluation of a self-management programme for patients with chronic obstructive pulmonary disease. Chronic Respiratory Disease, August 2014, vol./is.11/3(163-172) 11 Fernandes, A., Pache, S., Bird, W., Bryden, C. (2006) Measures to improve knowledge and self-care among patients with COPD: a UK general practice audit. Primary Care Respiratory Journal, October 2006, vol./is.15/5(307-309) 12 Paget, T., Jones, C., Davies, M., Evered, C., Lewis, C. (2010) Using home telehealth to empower patients to monitor and manage long term conditions. Nursing Times, November 2010,vol./is.106/45(17-9) 13 The Health Foundation (2014) Improving Quality in General Practice: evidence scan. London: The Health Foundation. 14 Roshanov, P.S. et al. for the CCDSS Systematic Review Team. (2011) Computerized clinical decision support systems for chronic disease management: A decision maker-researcher partnership systematic review. Implementation Science 2011, 6:92 15 McGeoch, G.R.B. et al. (2006) Self-management plans in the primary care of patients with chronic obstructive pulmonary disease. Respirology, September 2006, vol./is.11/5(611-618) 16 Ouellet, I. et al. (2011) Effect of an integrated care approach with self-management in patients with COPD. American Journal of Respiratory and Critical Care Medicine, May 2011, vol./is.183/1 MeetingAbstracts,1073449X(01May2011) 17 Sedeno, M.F., Nault, D., Hamd, D.H., Bourbeau, J. (2009) A self-management education program including an action plan for acute COPD exacerbations. COPD: Journal of Chronic Obstructive Pulmonary Disease, 2009, vol./is.6/5(352-358) 18 Walters, J.A.E., Turnock, A.C., Walters, E.H., Wood-Baker, R. (2010) Action plans with limited patient education only for exacerbations of chronic obstructive pulmonary disease (Review)The Cochrane Collaboration, John Wiley and Sons 19 Cameron-Tucker, H.L., Wood-Baker, R., Owen, C., Joseph, L., Walters, E.H. (2014) Chronic disease selfmanagement and exercise in COPD as pulmonary rehabilitation: A randomized controlled trial. International Journal of Chronic Obstructive Pulmonary Disease, May 2014, vol./is.9/(513-523) 20 Alsayed, S., Elnagar, K., Mousa, E. (2014) Influence of 7 weeks self management education on the BAI and 6MWD of COPD stable patients. Egyptian Journal of Chest Diseases and Tuberculosis, July 2014, vol./is.63/3(603-609) NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 14
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Lomundal, B.K., Steinsbekk, A. (2012) Five-year follow-up of a one-year self-management program for patients with COPD. International Journal of Chronic Obstructive Pulmonary Disease, 2012, vol./is.7/(87-93) 22 Wardini, R. et al. (2013) Using a virtual game system to innovate pulmonary rehabilitation: safety, adherence and enjoyment in severe chronic obstructive pulmonary disease. Canadian Respiratory Journal, September 2013, vol./is.20/5(357-61) 23 Efraimsson, E.O., Hillervik, C., Ehrenberg, A. (2008) Effects of COPD self-care management education at a nurse-led primary health care clinic. Scandinavian Journal of Caring Sciences, June 2008, vol./is.22/2(178-185) 24 NICE (National Institute for Health and Clinical Excellence (2010). Chronic obstructive pulmonary disease: management of chronic obstructive pulmonary disease in adults in primary and secondary care (partial update). NICE Clinical Guideline 101. 25 McLean, S., Nurmatov, U., Liu, J.L., Pagliari, C., Car, J., Sheikh, A. (2011) Telehealth care for chronic obstructive pulmonary disease. Cochrane Database of Systematic Reviews, 2011, vol./is./7(CD007718) 26 the largest randomized control trial of telehealth and telecare in the world, involving over 6000 patients and 238 GP practices (over 3000 patients with diabetes, heart failure or COPD for the telehealth trial). The definitions used in the trial are Telehealth (remote care) - Electronic sensors or equipment that monitors vital health signs remotely, e.g. in your own home or while on the move. These readings are automatically transmitted to an appropriately trained person who can monitor the health vital signs and make decisions about potential interventions in real time, without the patient needing to attend a clinic; Telecare - Personal and environmental sensors in the home that enable people to remain safe and independent in their own home for longer. 24 hour monitoring ensures that should an event occur the information is acted upon immediately and the most appropriate response put in train. 27 Polisena, J. et al. (2010) Home tele health for chronic obstructive pulmonary disease: a systematic review and meta-analysis. Journal of Telemedicine & Telecare, 2010, vol./is.16/3(120-7) 28 Dinesen, B., Andersen, S.K., Hejlesen, O., Toft, E. (2011) Interaction between COPD patients and health care professionals in a cross-sector tele-rehabilitation programme. Studies in Health Technology & Informatics, 2011, vol./is.169/(28-32) 29 Lewis, K.E., Annandale, J.A., Warm, D.L. (2010) Home telemonitoring and quality of life in stable, optimized chronic obstructive pulmonary disease. Journal of Telemedicine and Telecare, vol./is.16/5(253-259) 30 McKinstry, B. (2013) The use of remote monitoring technologies in managing chronic obstructive pulmonary disease. Qjm, October 2013, vol./is.106/10(883-5) 31 Goldstein, R.S., 'Hoski, S. (2014) Telemedicine in COPD: time to pause. Chest, May 2014, vol./is.145/5(945-9) 32 Wong, K.W., Wong, F.K., Chan, M. Effects of nurse-initiated telephone follow-up on self-efficacy among patients with chronic obstructive pulmonary disease. Journal of Advanced Nursing, January 2005,vol./is.49/2(210-22) 33 Kamei, T., Yamamoto, Y., Kajii, F., Nakayama, Y., Kawakami, C. (2013) Systematic review and meta-analysis of studies involving telehome monitoring-based telenursing for patients with chronic obstructive pulmonary disease. Japan Journal of Nursing Science:JJNS, December 2013, vol./is.10/2(180-92) 34 Sicotte, C., Pare, G., Morin, S., Potvin, J., Moreault, M. (2011) Effects of home telemonitoring to support improved care for chronic obstructive pulmonary diseases. Telemedicine Journal & E-Health, March 2011, vol./is.17/2(95-103) 35 Jarad, N.A. Sund, Z.M. (2011) Telemonitoring in chronic obstructive airway disease and adult patients with cystic fibrosis. Journal of Telemedicine & Telecare, 2011, vol./is.17/3(127-32) 36 Holland, A. (2013) Telehealth reduces hospital admission rates in patients with COPD. Journal of Physiotherapy, June 2013, vol./is.59/2(129) 37 Dennis, S.M., Harris, M., Lloyd, J., Powell Davies, G., Faruqi, N., Zwar, N. (2013) Do people with existing chronic conditions benefit from telephone coaching? A rapid review. Australian Health Review, June 2013, vol./is.37/3(381-8) 38 Nield, M., Hoo, G.W. (2012) Real-time telehealth for COPD self-management using Skype. Copd: Journal of Chronic Obstructive Pulmonary Disease, December 2012, vol./is. 9/6(611-9) 39 Holland, A.E., Hill, C.J., Rochford, P., Fiore, J., Berlowitz, D.J., McDonald, C.F. (2013) Telerehabilitation for people with chronic obstructive pulmonary disease: feasibility of a simple, realtime model of supervised exercise training. Journal of Telemedicine & Telecare, June 2013, vol./is.19/4(222-6) NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 15
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Kuo, C.C., Lin, C.C., Lin, S.Y., Yang, Y.H., Chang, C.S., Chen, C.H. (2013) Effects of self-regulation protocol on physiological and psychological measures in patients with chronic obstructive pulmonary disease. Journal of Clinical Nursing, October 2013, vol./is.22/19-20(2800-11) 62 Benzo, R. (2013) Mindfulness and motivational interviewing: two candidate methods for promoting selfmanagement. Chronic Respiratory Disease, August 2013, vol./is.10/3(175-82) 63 Siddique, H.H. et al. (2012) Randomized trial of pragmatic education for low-risk COPD patients: impact on hospitalizations and emergency department visits. International Journal of Chronic Obstructive Pulmonary Disease, 2012, vol./is.7/(719-28) 64 Nici, L., Bontly, T.D., Zuwallack, R., Gross, N. (2014) Self-management in chronic obstructive pulmonary disease. Time for a paradigm shift? Annals of the American Thoracic Society, January 2014, vol./is.11/1(101-7) 65 Fan, V.S. et al. (2012) A comprehensive care management program to prevent chronic obstructive pulmonary disease hospitalizations: a randomized, controlled trial. Annals of Internal Medicine, May 2012, vol./is.156/10(673-83) 66 Younis, I., Roberts, N.J., Partridge, M.R. Barriers to health care professionals encouraging self-management in asthma and COPD. (2009) Thorax, December 2009, vol./is.64/(A93) 67 Chen, K.-H., Chen, M.-L., Lee, S., Cho, H.-Y., Weng, L.-C. (2008) Self-management behaviours for patients with chronic obstructive pulmonary disease: A qualitative study. Journal of Advanced Nursing, December 2008, vol./is.64/6(595-604) 68 Yu, S.-H., Guo, A.-M., Zhang, X.-J. (2014) Effects of self-management education on quality of life of patients with chronic obstructive pulmonary disease. International Journal of Nursing Sciences, March 2014, vol./is.1/1(53-57) 69 Kiser, K., Jonas, D., Warner, Z., Scanlon, K., Shilliday, B.B., DeWalt, D.A. (2012) A randomized controlled trial of a literacy-sensitive self-management intervention for chronic obstructive pulmonary disease patients. Journal of General Internal Medicine, February 2012, vol./is.27/2(190-5) 70 Cramm, J.M., Nieboer, A.P. (2013) The relationship between self-management abilities, quality of chronic care delivery, and wellbeing among patients with chronic obstructive pulmonary disease in The Netherlands. International Journal of Chronic Obstructive Pulmonary Disease,2 013, vol./is.8/(209-14) 71 Kruis, A.L., van Schayck, O.C.P., In't Veen, J.C.C.M., van der Molen, T., Chavannes, N.H. (2013) Successful patient self-management of COPD requires hands-on guidance. The Lancet Respiratory Medicine, November 2013, vol./is.1/9(670-672) 72 Padilla-Zarate, M.P. et al. (2013) Self-care and quality of life after nursing counseling in patients with chronic obstructive pulmonary disease. Original Title [Spanish] Autocuidado y calidad de vida posterior a la consejeria de enfermeria en pacientes con enfermedad pulmonar obstructiva cronica. Revista Mexicana de Enfermeria Cardiologica, January 2013, vol./is.21/1(15-23) 73 Bourbeau, J. et al. (2013) Making collaborative self-management successful in COPD patients with high disease burden. Respiratory Medicine, July 2013, vol./is.107/7(1061-1065) 74 Bourbeau, J. et al. (2013) Making collaborative collaborative self-management successful in copd patients with high disease burden. Canadian Respiratory Journal, March 2013, vol./is.20/2(e27) 75 Walters, J.A.E. et al. (2013)Telephone health mentoring improves self management capacity in communityrecruited copd. Respirology, April 2013, vol./is.18/(50) 76 Cho, S.-H., Lee, J.-Y., Lee, C.-Y., Lee, M.-G. (2009) Self-care and psychosocial characteristics in patients with chronic obstructive pulmonary disease. Respirology, November 2009, vol./is.14/(A215) 77 Wood-Baker, R., Reid, D., Robinson, A., Walters, E.H. (2012) Clinical trial of community nurse mentoring to improve self-management in patients with chronic obstructive pulmonary disease. International Journal of Chronic Obstructive Pulmonary Disease, 2012, vol./is.7/(407-13) 78 Dinesen, B., Huniche, L., Toft, E. (2013) Attitudes of COPD patients towards tele-rehabilitation: a cross-sector case study. International Journal of Environmental Research & Public Health [Electronic Resource], November 2013, vol./is.10/11(6184-98) 79 Sohanpal, R., Seale, C., Taylor, S.J. (2012) Learning to manage COPD: a qualitative study of reasons for attending and not attending a COPD-specific self-management programme. Chronic Respiratory Disease, August 2012, vol./is.9/3(163-74) NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 17
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Huniche, L., Dinesen, B., Nielsen, C., Grann, O., Toft, E. (2013) Patients' use of self-monitored readings for managing everyday life with COPD: a qualitative study. Telemedicine Journal & E-Health, May 2013, vol./is.19/5(396-402) 81 Effing, T., Zielhuis, G., Kerstjens, H., van der Valk, P., van der Palen, J. (2011) Community based physiotherapeutic exercise in COPD self-management: a randomized controlled trial. Respiratory Medicine, March 2011, vol./is.105/3(418-26) 82 Hartman, J.E., ten Hacken, N.H., Boezen, H.M., de Greef, M.H (2013) Self-efficacy for physical activity and insight into its benefits are modifiable factors associated with physical activity in people with COPD: a mixedmethods study. Journal of Physiotherapy, June 2013, vol./is.59/2(117-24) 83 Zwerink, M., van der Palen, J., van der Valk, P., Brusse-Keizer, M., Effing, T. (2013) Relationship between daily physical activity and exercise capacity in patients with COPD. Respiratory Medicine, February 2013, vol./is.107/2(242-8) 84 Stellefson, M. et al. (2014) You Tube as a source of chronic obstructive pulmonary disease patient education: A social media content analysis. Chronic Respiratory Disease, February 2014, vol./is.11/2(61-71) 85 Bourbeau, J., Nault, D., Dang-Tan, T. (2004) Self-management and behavior modification in COPD. Patient Education and Counseling, March 2004, vol./is.52/3(271-277) 86 Jonsdottir, H. (2013) Self-management programmes for people living with chronic obstructive pulmonary disease: a call for a reconceptualisation. Journal of Clinical Nursing, March 2013, vol./is.22/5-6(621-37) 87 Effing, T.W. et al. (2012) Self-management programmes for COPD: moving forward. Chronic Respiratory Disease, February 2012, vol./is.9/1(27-35) 88 Wortz, K. et al. (2012) A qualitative study of patients' goals and expectations for self-management of COPD Primary Care Respiratory Journal, December 2012, vol./is.21/4(384-391) 89 Sheridan, N., Kenealy, T., Salmon, E., Rea, H., Raphael, D., Schmidt-Busby, J. (2011) Helplessness, self blame and faith may impact on self management in COPD: A qualitative study. Primary Care Respiratory Journal, September 2011,vol./is.20/3(307-314) 90 Rice, K., Bourbeau, J., MacDonald, R., Wilt, T.J. (2014) Collaborative self-management and behavioral change. Clinics in Chest Medicine, June 2014, vol./is.35/2(337-51) 91 Marino, P., Sirey, J. A., Raue, P.J., Alexopoulos, G.S. (2008) Impact of social support and self-efficacy on functioning in depressed older adults with chronic obstructive pulmonary disease. International Journal of Copd, 2008, vol./is.3/4(713-8) 92 Apps, LD. et al. (2014) How do informal self-care strategies evolve among patients with chronic obstructive pulmonary disease managed in primary care? A qualitative study. International Journal of Copd, 2014, vol./is.9/(257-63) 93 Trivedi, R.B., Bryson, C.L., Udris, E., Au, D. (2012) The influence of informal caregivers on adherence in COPD patients. Annals of Behavioral Medicine, August 2012, vol./is.44/1(66-72) 94 Verbrugge, R., de Boer, F., Georges, J.-J. (2013) Strategies used by respiratory nurses to stimulate selfmanagement in patients with COPD. Journal of Clinical Nursing, October 2013, vol./is.22/19-20(2787-2799) 95 Disler, R.T., Gallagher, R.D., Davidson, P.M. (2012) Factors influencing self-management in chronic obstructive pulmonary disease: An integrative review. International Journal of Nursing Studies, February 2012, vol./is.49/2(230-242) 96 Benzo, R. (2012) Collaborative self-management in chronic obstructive pulmonary disease: learning ways to promote patient motivation and behavioral change. Chronic Respiratory Disease, 2012,vol./is.9/4(257-8) 97 Bourbeau, J. (2009) The role of collaborative self-management in pulmonary rehabilitation. Seminars in Respiratory & Critical Care Medicine, December 2009, vol./is.30/6(700-7) 98 Koizumi, T. et al. (2005) Trial of remote telemedicine support for patients with chronic respiratory failure at home through a multistation communication system. Telemedicine Journal & E-Health, August 2005, vol./is.11/4(481-6) 99 Warwick, M. (2010) Self-management and symptom monitoring among older adults with chronic obstructive pulmonary disease. Journal of Advanced Nursing, 2010, vol./is.66/4,0309-2402 100 The Health Foundation. (2014) Person-centred care made simple: what everyone should know about person-centred care, quick guide. London: The Health Foundation. NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 18
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Andenaes, R., Bentsen, S.B., Hvinden, K., Fagermoen, M.S., Lerdal, A. (2014) The relationships of selfefficacy, physical activity, and paid work to health-related quality of life among patients with chronic obstructive pulmonary disease (COPD). Journal of Multidisciplinary Healthcare, June 2014, vol./is.7/(239-247) 102 Bentsen, S.B., Langeland, E., Holm, A.L. (2012) Evaluation of self-management interventions for chronic obstructive pulmonary disease. Journal of Nursing Management, September 2012, vol./is.20/6(802-813) 103 Taylor, S.J.C., Sohanpal, R., Bremner, S.A., Devine, A., Eldridge, S., Griffiths, C.J. (2009) Pilot randomized controlled trial of a 7-week disease-specific self-management programme for patients with COPD: BELLA (better living with long term airways disease study). Thorax, December 2009, vol./is.64/(A95-A96) 104 Kheirabadi, G.R., Keypour, M., Attaran, N., Bagherian, R., Maracy, M.R. (2008) Effect of add-on "Self management and behavior modification" education on severity of COPD. Tanaffos, June 2008, vol./is.7/3(2330) 105 Lomundal, B.K., Steinsbekk, A. (2007) Observational studies of a one year self-management program and a two year pulmonary rehabilitation program in patients with COPD. International Journal of COPD, 2007, vol./is.2/4(617-624) 106 Effing, T.W. et al. (2007) Self-management education for patients with chronic obstructive pulmonary disease. Cochrane Database of Systematic Reviews, 2007, vol./is./4,1469-493X(2007) 107 Zwerink, M., Brusse-Keizer, M., Van Der Valk, P., Frith, P., Van Der Palen, J., Effing, T. (2014) Results of the second update of the copd self-management cochrane review. Respirology, April 2014, vol./is.19/(25) 108 Yu, S.-H., Guo, A.-M., Zhang, X.-J. (2014) Effects of self-management education on quality of life of patients with chronic obstructive pulmonary disease. International Journal of Nursing Sciences, March 2014, vol./is.1/1(53-57) 109 Labrecque, M. et al. (2011) Can a self-management education program for patients with chronic obstructive pulmonary disease improve quality of life? Canadian Respiratory Journal, September 2011, vol./is.18/5(e77e81) 110 Gadoury, M.-A. et al. (2005) Self-management reduces both short- and long-term hospitalization in COPD. European Respiratory Journal, November 2005, vol./is.26/5(853-857) 111 Zwerink M, Brusse-Keizer M, van der Valk PDLPM, Zielhuis GA, Monninkhof EM, van der Palen J, Frith PA, Effing T. (2014) Self management for patients with chronic obstructive pulmonary disease (Review). The Cochrane Collaboration, John Wiley & Sons Ltd 112 Simpson, E., Jones, M.C. (2013) An exploration of self-efficacy and self-management in COPD patients. British Journal of Nursing, vol./is.22/19(1105-9) 113 Bonsaksen, T., Lerdal, A., Fagermoen, M.S. (2012) Factors associated with self-efficacy in persons with chronic illness. Scandinavian Journal of Psychology, August 2012, vol./is.53/4(333-9) 114 Bentsen, S.B., Wentzel-Larsen, T., Henriksen, A.H., Rokne, B., Wahl, A. (2010) Self-efficacy as a predictor of improvement in health status and overall quality of life in pulmonary rehabilitation—an exploratory study. Patient Education & Counseling, October 2010, vol./is.81/1(5-13) 115 Cramm, J.M., Nieboer, A.P. (2012) Self-management abilities, physical health and depressive symptoms among patients with cardiovascular diseases, chronic obstructive pulmonary disease, and diabetes. Patient Education and Counseling, June 2012, vol./is.87/3(411-415) 116 British Thoracic Society Pulmonary Rehabilitation Guideline Group (2013) BTS Guideline on Pulmonary Rehabilitation in Adults. Thorax. September 2013 Volume 68 Supplement 2 117 IMPRESS (2014) Breathlessness IMPRESS tips (BITs) for commissioners: discuss locally, and adapt to your local context. Primary Care Respiratory Society 118 Bischoff, E.W.M.A., Akkermans, R., Bourbeau, J., Van Weel, C., Vercoulen, J.H., Schermer, T.R.J. (2012) Comprehensive self management and routine monitoring in chronic obstructive pulmonary disease patients in general practice: Randomised controlled trial. BMJ(Online), December 2012, vol./is.345/7885,17561833(01Dec2012) 119 IMPRESS (2012) IMPRESS guide to the relative value of COPD interventions. Primary Care Respiratory Society 120 Vitacca, M. et al. (2009) Tele-assistance in chronic respiratory failure patients: a randomized clinical trial. European Respiratory Journal, February 2009, vol./is.33/2(411-8) NEQOS –Ridley House, Henry Street, Gosforth, Newcastle upon Tyne NE3 1DQ – T: 0191 245 6708 Copyright © 2013-14, North East Quality Observatory System Page 19
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DOCUMENT GOVERNANCE Document name Document type Version Date Document Classification Prepared on behalf of Created by Epidemiologist Project Director
COPD: implementing NICE Quality Standard 10, Statement 2 Report 1 23/2/2015 Collaborating for Better Care Partnership Jean Brown Jackie Gray Sue Shilling
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VERSION CONTROL Version Document Type 0.1 Draft report
30/11/2014
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n/a Jean Brown Suggestions from JG re order and main focus. Additional info from new sources Jean Brown Minor amendments from JG Jean Brown
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