A systematic review of the effectiveness of patient-centred care on emergency room visits, hospitalizations, unscheduled sick clinic visits, and missed school days for children with asthma.

Centre conducting review Pace University, College of Health Professions, Leinhard School of Nursing in collaboration with the New Jersey Center for Evidence Based Nursing: A Collaborating Centre of the Joanna Briggs Institute, University of Medicine and Dentistry of New Jersey School of Nursing, Newark, USA. Review Questions/Objectives The overall objective is to conduct a systematic review to extract, appraise, and synthesize the best available evidence to determine the effectiveness of patient-centred care in the management of children with asthma. Review Question: In children with asthma, what is the effect of patient-centred care versus traditional care on emergency room visits, hospitalizations, unscheduled primary care provider visits, and missed school days? Background Asthma is a serious - sometimes life-threatening - incurable, chronic respiratory disease thought to be caused by a combination of genetic and environmental factors. The pathophysiology of asthma is characterized by airway inflammation, intermittent airflow obstruction, and bronchial hyper-responsiveness. 1 Asthma is essentially the result of exaggerated immune response in bronchial airways.2 During an asthma episode, inflamed airways react to environmental triggers such as smoke, dust, or pollen. The airways narrow and produce excess mucus, making it difficult to breathe. Statistics from the World Health Organization (WHO) 20113 indicate that approximately 235 million people presently suffer from asthma worldwide, making it one of the most expensive epidemics to treat globally. Weaver4 states that the costs linked to asthma surpass those of tuberculosis and AIDS combined. The United States of America (US) spends about six billion dollars on healthcare costs for asthma treatment 4 and about 3.2 billion dollars of this amount is spent on children under eighteen.5Britain spends about two billion pounds4 and Canada over twelve billion dollars on healthcare costs for the treatment of asthma.6 Asthma is also one of the most underdiagnosed and under treated illnesses, causing considerable burden to asthma sufferers and their families over their lifetime.7 In North America, asthma accounts for over 40,000 people missing work or school, 30,000 people experiencing exacerbations, 5,000 ER visits, 1000 hospital admissions, and eleven deaths every day.8 According to Moonie, Sterling, Figgs, and Castro9 and statistics from the WHO 2011,7 there are greater than 4,000 deaths in North America and 180,000 deaths worldwide per year related to asthma. Presently, there is no gold standard for asthma diagnosis; there is no specific physiologic, immunologic, or histologic test for diagnosing asthma.10Accurate diagnosis of children with asthma can therefore be challenging at times, especially in children younger than five years of age.11 It is undoubtedly difficult to diagnose asthma in young children because there are many conditions that mimic asthma-like symptoms in this age group. Diagnosis in children younger than five years of age is usually made by ruling out all other possible differential diagnoses and by appraising symptom patterns (i.e., airways obstructions and hyper-responsiveness) and/or response to therapy over time (i.e., partial or complete reversibility).11 Accordingly, a younger child's response to treatment is considered to be confirmation of an asthma diagnosis. Conversely, in children five years of age and older, clinicians base their diagnoses on multiple factors, including family and personal history, symptom patterns, risk factors, response to therapy, and diagnostic testing.14 Older children are also able to perform pulmonary function tests, such as spirometry, which is considered the gold standard of objective measurements for asthma.14 Airflow obstruction is indicated by reduced FEV1 (forced expiratory volume in one second) and a reduced FEV1: FVC (forced vital capacity) ratio; a twelve % change in FEV1 is considered significant and is indicative of asthma.14 In children who are considered normal at baseline, pre/post-bronchodilator studies or pre/post-exercise studies are the next steps in establishing a diagnosis of asthma. Other tests may include: lung function tests; chest x-rays; allergy, skin, or blood tests; arterial blood gas; and eosinophil count (recognized as a prime contributor to the inflammatory process of asthma). The prevalence of asthma is higher in children than in adults and is considered to be the leading serious chronic illness of children in the US today.3 The impact of childhood asthma has not been evaluated in many developing nations but an estimated fifteen to twenty precent of the total population of children affected live in nations such as India, China, Indonesia, and Kenya; as high as thirty precent of children affected live in countries such as Brazil, Costa Rica, Panama, Peru, and Uruguay.6 In 2006, an estimated 6.8 million children in the US under age eighteen (almost 1.2 million under age five) had asthma, 4.1 million of which had an asthma attack, and many others had “hidden” or undiagnosed asthma.12 Nationally, the highest prevalence rate was seen in children five to seventeen years of age (106.3 per 1,000 population), with rates decreasing with age.12 Overall, the rate in children under eighteen (92.8 per 1,000) was much greater than those over eighteen (72.4 per 1,000).12 In the US, asthma is the third leading cause of hospitalization among children under the age of fifteen. In 2005, approximately 32.6 precent of hospitalizations due to asthma were in children under age fifteen yet only 27.8 precent of the US population was younger than fifteen years of age.12 Childhood asthma is also one of the most common causes of school absenteeism across the nation.13 Children are a vulnerable population given their narrow airways, higher breathing rates, and developing lungs and immune systems. According to the 2007 National Asthma Education and Prevention Program Expert Panel Report 3, a key to understanding childhood asthma is that the onset of asthma for most patients begins early in life, with the pattern of disease persistence determined by early, recognizable risk factors, including atopic disease, recurrent wheezing, and a parental history of asthma.14 One fundamental characteristic of asthma is immunological, with young children in the early stages of asthma manifesting signs of excessive inflammation of their airways. Some cases of childhood asthma may be hereditary and due to genetics.15 However, many more cases of childhood asthma are the result of continuous exposure to environmental allergens. Hope5 states that the WHO attributes filthy outdoor air, resulting from traffic and industrial pollution, for exacerbating asthma. In addition, indoor environmental factors are also associated with incidence, prevalence, and exacerbation. Such indoor environmental factors include continuous exposure to tobacco smoke, mold, dust mites, pet dander, and cockroaches.16 Accordingly, environmental control is an important cornerstone of care and allergen avoidance is recommended for children with asthma who are known to be sensitive to allergens. Unfortunately, deleterious environmental factors are highly prevalent and difficult to mitigate. While the traditional method for treating asthma had been reaction as opposed to prevention, preventive medication is presently the centre of treatment for children with frequent, intermittent, or persistent asthma.17 When taken regularly, preventive medicine has been shown to decrease inflammation within the lungs and improve disease outcomes.18 Current treatment guidelines tout an individualized approach, which revolves around a specific, customized plan for proactively monitoring and managing symptoms. Specifically, once a child is diagnosed with asthma, the goal of therapy is to reduce wheezing and coughing, reduce the risk and number of acute exacerbations, and minimize adverse effects of treatments and absences from school.19This requires a supportive environment where patients and their families attain specific management skills to improve asthma management with sensitivity to their cultural beliefs and values. Caregivers of children with significant asthma morbidity have consistently demonstrated low concordance with physicians concerning treatment for their children, indicating that caregiver-physician communication, especially about symptom control and proper medication use, is poorly understood.20 This breakdown in communication is attributable to provider and/or patient/caregivers. Contributing factors of poor communication may be due to inadequate translation of instructions into laymen's terms, lack of sufficient time to explain and demonstrate the proper use of a particular medicine or regimen, or lack of understanding and inadequate knowledge on the part of the patient/caregivers. Suboptimal adherence to preventive medication is often cited as a cause for poor asthma control in children.21 While reasons for suboptimal adherence are multifactorial, patterns cited often include inadequate knowledge of the disease and regimen, inadequate patient-provider communication, and complicated regimen characteristics.22 Patients report higher levels of adherence to medication prescribed by physicians who communicate well, provide clear explanations about how to take medications, and whose interactions were described as collaborative. 23Some studies have demonstrated that, although families of children with asthma have a high level of asthma knowledge, they frequently do not adhere to physician care plans.24 In order for children and their parents to effectively manage treatments associated with asthma, they must not only understand the communicated disease process but adhere to prescribed therapy, essential for achieving and maintaining treatment effectiveness. Asthma education alone does not appear to be the solution. Successful asthma care may likely benefit from a patient-centred approach that addresses needs of the child and caregivers at a level they understand and participate in. Likewise, healthcare has been evolving from a disease-centred model toward a patient-centred model.25In the older, disease-centred model, for example, physicians make almost all treatment decisions as patients and families are thrust into an almost passive, dependent role. The patient-centred model, however, promotes patients becoming active participants in their care, often precipitating improved outcomes. Although additional research is necessary, there is mounting evidence that incorporating a patient-centred approach to childhood asthma management will achieve improved outcomes, including patient health. The philosophy of patient-centred care infers that adherence and successful outcomes are positively impacted when families and providers collaborate, often culminating in a collective sense of responsibility and unified support of the paediatric patient. Studies demonstrate that patient-centred care results in increased adherence to established medical protocols and better treatment outcomes.26 In fact, a treatment guideline of the U.S. National Heart, Lung, and Blood Institute27 proposes the establishment of a partnership amongst the patient, his or her family, and clinicians. Finally, the Alliance of Patient Organizations27 reports that patient-centred care may be the most cost-effective way to improve health outcomes for patients by focusing on the patient rather than the disease, prompting patients to adhere to treatments, make behavioural changes, and participate in self-management. Although we have identified numerous search terms that are synonymous with patient-centred care that will be investigated as part of our search strategy, patient-centred care will be emphasized for the purpose of illustrating the background portion of our systematic review protocol. Patient-centred care has been defined by the Institute of Medicine (IOM)29 as, “Providing care that is respectful of and responsive to individual patient preferences, needs, and values…”. It makes the patient and their loved ones an integral part of the care team who collaborate with healthcare professionals in making clinical decisions, often “owning” the course of their health and in assuming greater personal responsibility for successful “vested” outcomes. Negotiating patients’ treatment decisions significantly improves adherence to asthma pharmacotherapy and clinical outcomes. International Alliance of Patients’ Organizations (IAOP) further describes patient-centred healthcare as care that is aimed at addressing the needs and preferences of patients.30 In addition, IAOP30 suggests that five basic principles are fundamental to achieve patient-centred healthcare: respect, choice, access, support, and education and information. A review of the literature on patient-centred care and its effects on outcomes in the treatment of asthma conducted by Qamar, Pappalardo, Arora, and Press31 suggest that suboptimal patient outcomes are likely to occur if patients’ perspectives are not incorporated into their treatment plans. Preliminary searches on the effect of patient-centred care on childhood asthma outcomes have been promising. According to the American Journal of Respiratory and Critical Care Medicine,32 patients' treatment decisions significantly improve adherence to asthma pharmacotherapy and clinical outcomes. Additionally, the WHO (2003)15 suggests that, “Guided self-management to prevent, assess, and treat symptoms is the key to optimizing disease control.” Presently, there is no systematic review on the effectiveness of a patient-centred care model in the management of childhood asthma in the Cochrane Library of Systematic Review, Medline, CINHAL, or the Joanna Briggs Institute Library of Systematic Reviews. A systematic review on this innovative model is therefore essential in providing valuable, evidenced based information on the impact of patient-centred care in the management of children with asthma. Definitions of Terms Traditional Care: Standard medical treatment of asthma using medications including bronchodilators, leukotriene inhibitors, steroids and/or oxygen irrespective of individual patient preferences, needs, and values. Traditional care also include generalized asthma education. Patient-Centred Care Model: Care that is respectful of and responsive to individual patient preferences, needs, and values.27 Outpatient Healthcare Setting: Any healthcare setting in which patients are seen on an outpatient basis (i.e. ambulatory care clinics or primary care settings). Emergency Room Visits: Unplanned visits to a hospital emergency room for treatment of asthma related symptoms. Patients are treated and released within twenty-four hours. Hospital Admissions: Patients admitted to a hospital for treatment of asthma. Primary Care Provider Visits: Visits outside the hospital setting to primary care providers - including physicians, nurse practitioners, and physician assistants - for management of asthma related symptoms. Missed School Days: Unplanned days absent from school due to asthma related illnesses. Inclusion Criteria Types of Participants The review will consider studies that include children from newborn to seventeen years of age with a clinical diagnosis of asthma who are being treated in an outpatient healthcare setting, regardless of severity, previous treatments, co-morbidities, and ethnic or socioeconomic backgrounds. Types of interventions The review will consider studies that evaluate the effects of the patient-centred care model in the management of children with asthma. Comparator: Traditional care as previously mentioned. Types of Studies The review will first consider randomized controlled trials (RCTs) and quasi-randomized controlled trials (CCTs). In the absence of RCTs or CCTs, other research designs, such as case-control and cohort studies, will be considered for inclusion in the systematic review. Types of Outcome Measures This review will consider studies that include the following outcome measures: emergency room visit rates, hospital admission rates, unscheduled-visit to primary care provider rates, and number of missed school days per year associated with asthma symptoms. Search Strategy The search strategy aims to find both published and unpublished studies from 1970 to present that are written in the English language. A three step search strategy will be utilized in this review. An initial limited search of Medline, CINHAL, and PsychINFO will be done, followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search will then be undertaken using all identified keywords and index terms across all included databases. Lastly, the reference list of all identified reports and articles will be hand searched for additional studies. The databases to be searched include: Medline, CINHAL, The Cochrane Central Register of Controlled Trials (CENTRAL), EMBASE, Premiere, PsychINFO, Healthsource: Nursing/Academic edition, and PubMed. An additional grey literature search to identify unpublished studies, papers, and/or dissertations will include: Google Scholar Advance, Mednar, Science.gov, scricus.com, Virginia Henderson Library of Sigma Theta Tau, Robert Wood Johnson Institute, Literacy Educational Online (LEO), TRIPP, Dissertations, and Abstracts International. Subject Headings To Be Used: asthma (MeSH, CINAHL Subject Heading), patient-centered care (MeSH, CINAHL Subject Heading), Patient Education as Topic (MeSH), Family-Centered Care (CINAHL Subject Heading), and Holistic Care (CINAHL Subject Heading). Full list of keywords to be used include: asthma, asthma management, asthma exacerbation, child*, patient-centered, patient-centred, patient-focused, family-centred, family centered, shared decision making, shared responsibility, patient involvement, self-management, motivational interviewing, consumer-centred, consumer-centered, person-centered, person-centred, collaborative negotiation, patient involvement, patient-centred education, patient centered education, learner-centred education, learner-centered education, patient-based evidence, patient partnership, and patient orientation. Time frame: According to Bertakis, Franks and Epstein, “Over the last 40 years, an extensive body of literature has supported the patient-centered approach to medical care.” 33 In accordance, the time frame for the database search will include 1970 to present. All studies identified from the three step search strategy will be assessed against the inclusion criteria, by two independent reviewers, for relevance based on the information contained in the title and abstract. Any disagreement that may arise between the reviewers will be resolved through discussion or with a third reviewer until consensus is reached. All studies that are deemed relevant will be retrieved for a full text review. These articles will then be reviewed by two independent reviewers to establish if the study meets the inclusion criteria. Again, disagreement that may arise between the reviewers will be resolved through discussion or with a third reviewer until consensus is reached. Studies that the inclusion will a full review and will be assessed for Studies that do not the inclusion will be from a full review and in a of of for will be assessed by two independent reviewers for to inclusion in the review. 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