Do Chronic Obstructive Pulmonary Diseases (COPD) Self-Management Interventions Consider Health Literacy and Patient Activation? A Systematic Review

Self-management (SM) includes activities that patients initiate and perform in the interest of controlling their disease and maintaining good health and well-being. This review examines the health literacy and patient activation elements of self-management interventions for Chronic Obstructive Pulmonary Diseases (COPD) patients. We investigated the effects of the intervention on health-related quality of life, self-efficacy, depression, and anxiety among people with COPD. We conducted a systematic review of studies evaluating the efficacy of self-management interventions among COPD patients that also included health literacy or patient activation as keywords. Four electronic databases Medline, EMBASE, PsycINFO, and Google Scholar, were searched to identify eligible studies. These studies were screened against predetermined inclusion criteria. Data were extracted according to the review questions. Twenty-seven studies met the criteria for inclusion. All of the included studies incorporated health literacy components and focused on COPD and self-management skills. Three studies measured health literacy; two showed improvements in disease knowledge, and one reported a significant change in health-related behaviors. Seventeen studies aimed to build and measured self-efficacy, but none measured patient activation. Eleven studies with multicomponent interventions showed an improvement in quality of life. Six studies that focused on specific behavioral changes with frequent counseling and monitoring demonstrated improvement in self-efficacy. Two interventions that used psychosocial counseling and patient empowerment methods showed improvement in anxiety and depression. Most self-management interventions did not measure health literacy or patient activation as an outcome. Successful interventions were multicomponent and comprehensive in addressing self-management. There is a need to evaluate the impact of comprehensive self-management interventions that address and measure both health literacy and patient activation on health outcomes for COPD patients.


Introduction
Chronic Obstructive Pulmonary Disease (COPD) is a common, preventable, and treatable disease that is characterized by persistent respiratory symptoms and airflow limitation [1]. The treatment and management of COPD is a significant challenge for health systems worldwide [2]. People suffering from COPD often have worsening symptoms, including breathlessness, which requires self-management Box 1. List of search terms used in conducting systematic review.

Inclusion Criteria
Papers should be RCTs or comparative studies in the English language, available in full text, and aimed at the self-management of COPD. Participants had to be diagnosed with COPD. The intervention had to include elements which addressed either HL or PA. Primary outcome measures had to include quality of life (QOL), anxiety and depression, self-efficacy, or the measurement of health literacy and patient activation.

Exclusion Criteria
Conferences abstracts, posters, studies with an intervention period of less than six months, published protocols, studies with patients with cancer as co-morbidity, telehealth interventions, drug trials, and studies reported in other than English language were excluded from this study.

Data Extraction
Initially, one author (U.N.Y.) screened all titles and excluded articles that were irrelevant under the supervision of MFH. After that, five authors (U.N.Y., M.F.H., H.H., J.L. and K.P.B.) used a standardized form based on eligibility criteria to independently review full-text articles in line with the Preferred Reporting Items for Systematic reviews. Finally, MFH separately examined the full-text articles meeting eligibility and exclusion criteria. There were few discrepancies between U.N.Y. and M.F.H. in the excluded data that were resolved in consensus discussion between the two reviewers. A vote of the majority was used to address disagreements during the review of full texts.

Results
Initially, 481 potentially relevant articles were identified. Twenty-seven studies met the inclusion criteria. Our screening process is depicted in Figure 1.

Health Literacy
All twenty-seven studies included in our review had interventions that address health literacy. This was provided through educational materials (covered information on COPD, self-management skills and COPD medications, breathing techniques, maintaining healthy lifestyle, managing stress and anxiety, inhalation instructions, etc.) and improving clinical communication between health providers and patients. Three [20][21][22] studies specifically measured health literacy in the form of COPD knowledge and self-management skills and behavior. Of these three studies, two [20,22] showed improvements in disease knowledge, and one study [21] reported a significant change in health-related behaviors.

Discussion
Despite a wealth of evidence showing beneficial outcomes of COPD self-management programs, substantial gaps remained in the evidence base. To the best of our knowledge, this is the first review to analyze the inclusion of health literacy and patient activation elements in COPD self-management interventions. All the included studies ( Table 1) evaluated interventions that aimed to address health literacy to some degree (although HL was not necessarily comprehensively addressed). Three studies [20][21][22] measured disease knowledge as an outcome. None of the authors measured participants' abilities to read, listen, communicate, and understand the provided information, including health promotion, disease prevention, and the navigation of available services. Although many studies addressed and measured self-efficacy, none specifically developed activities designed to activate patients or measured patient activation as an outcome measure. This suggests the need for their role in self-management for long-term conditions, such as Chronic Obstructive Pulmonary Disease to be further explored and evaluated.
In more than a third of the included studies, self-management interventions improved the quality of life of COPD patients. More importantly, QOL improvements were seen majorly in those interventions that addressed both HL and PA (10 out of 11 interventions that improved QOL) to some degree and offered a comprehensive package of self-management components (individual tailored education sessions on disease and self-management, goal-setting and coping strategies, social support, physical activity, improving confidence, etc.). In line with our findings, other reviews have suggested that multicomponent self-management interventions (SMIs) are significantly effective in improving HRQOL [3,6,45]. However, our finding shows marked variation in the measures of quality of life. This heterogeneity prevented meaningful meta-analysis. Ferrone et al. [46] have suggested the use of a single instrument in future research (i.e., using the Clinical COPD Questionnaire (CCQ)-a 10-item, health-related quality-of-life questionnaire). As reported in another review, we found most studies used generic HRQOL measures (i.e., EQ5D and SF scales), and these reported insignificant differences in quality of life [46]. Overall, our finding shows that multicomponent self-management programs having both HL and PA are more likely to yield promising improvements in QOL. Integrated Disease Management delivered by two specialized physiotherapists, a respiratory nurse, a physician assistant, a dietician, a pharmacist, and a supervising primary care physician. Intervention includes the following: rapid action plans for exacerbations, personalized physical activity training program (at least three sessions of at least 40 min of physical activity per week over three months) and continuous self-management education including personal goal-setting by motivational interviewing techniques.
Age Mentoring by Community Health Nurses. Intervention includes the following: home visits and telephone coaching, maintenance of patient diary that recorded breathlessness, cough, sputum, wellness, physical activity, and use of reliever medication, along with monthly reflective feedback meetings Mean age I/C: 66.5 ± 9.5/69.7 ± 9.4 years Gender (n = M/F): 46/60 Setting: Inpatients Mean % predicted FEV 1 I/C = 34.9 ± 14.2/33.8 ± 13.6 Mean (SD) dyspnea score I/C = 3.   Health Belief Model Nursing InterventionIntervention includes the following:Besides the routine nursing care, a 20-to 30-min HBM based nursing education was implemented for patients in the intervention group every two days after their disease conditions were stable. The tenets of nursing intervention mainly Included the following: (1) assisting the patients to perceive the susceptibility and severity of COPD; (2) assisting them to realize the benefits of the COPD treatment and the initiation of healthy behaviors in COPD; (3) assisting them to conquer the obstacles so that healthy behaviors were applied, and adverse actions were avoided; (4) improving their confidence in managing COPD; and (5) alerting them the signals used to monitor their disease and instructing family members to support patients for the disease management  [42] Intervention was delivered by multidisciplinary team. Intervention includes the following: 2 h (1 h) individually tailored exercise training and one-hour education program) every three months for one year.  Intervention delivered by a primary care team (physician, nurse, and social worker) Intervention includes the following: 2 h educational program followed by the distribution of patient-specific support material. The intervention consisted of the following: (a) patient's empowerment for self-management; (b) an individualized care plan; (c) access to a call center; and (d) coordination between the levels of care.

HRQOL and depression and anxiety
Improved in health-related quality of life. Improvement in anxiety and depression.

Zwerink et al. (2016) [4]
Four weekly self-management meetings supervised by a respiratory nurse and aPhysiotherapist. Intervention includes the following: Self-management booklets for patients, patients were trained in completing daily diaries to record major symptoms (breathlessness, sputum production, sputum color) and minor symptoms (cough, wheeze, running nose, sore throat, fever. Patients also were taught to recognize the start of an exacerbation, and to initiate a course of oral prednisolone and/or antibiotics guided by the action plan.  Intervention delivered by laypersons and doctors Intervention includes the following:Culturally specific educational interventions -two videos (one lay and one clinician video) and one pamphletIn the "lay video," patients role-played a scenario offering opinions and narratives about COPD self-management in a 12 min video clip Self-management delivered by a nurse. Intervention includes the following: Telephone health coaching delivered by a nurse with supporting written documents, a pedometer, and a self-monitoring diary about smoking cessation, physical activity increases, correct Inhaler use technique, and medication adherence. Two moderators and a registered nurse-delivered intervention and/or physiotherapist. Intervention includes the following:A salutogenic orientation was incorporated to improve their self-management capabilities. Sessions covered were: problem-solving, goal setting, symptoms, social challenges, physical activity, nutrition, medication, smoking cessation, exacerbations, and psychological issues.
Mean age I/C: 68.5 ± 8.1/69.  Intervention delivered by pulmonary nurse and practitioner specialist. Intervention includes the following: Health coaching focused on helping patients identify and achieve self-care goals for their COPD using techniques from motivational Interviewing and adult learning models.
Specific content included COPD education, action planning for exacerbations, teaching proper inhaler use, and facilitating consultation with a pulmonary nurse practitioner specialist.
Mean age I/C: 60.7 ± 8.0/61.9 ± 7.  [43] Intervention was delivered by COPD nurses. Intervention includes the following:Individualized COPD self-management support to help patients take medications correctly, recognize exacerbations signs and follow action plan practice breathing exercises and energy conservation techniques, maintain an active lifestyle, seek help as needed, and stop smoking. A nurse-led self-management program. Intervention includes the following: Every participant received five to six face-to-face, individually tailored education sessions before discharge. The topics included were: (1) what is COPD and what is its impact; (2) respiratory muscle training (pursed-lip breathing and abdominal breathing); (3) medication and appropriate use of inhalation devices; (4) coughing techniques; (5) non-pharmacologic strategies for controlling symptoms; (6) understanding the importance of physical activities for COPD and how to choose the right type of exercise; (7) [22] Intervention was provided by a certified respiratory educator and physician, or usual physician care. Intervention includes the following: Case management, education, and skills training, including self-management education.
Mean age I/C: 68.6 ± 9.6/67.9 ± 9.  Of fifteen studies that addressed self-efficacy, only six showed a positive effect on self-efficacy for behavior changes, such as quitting smoking, performing a daily exercise, or taking medicine according to guidelines. Available literature [9] suggests that increased patient engagements with proper confidence-building may help the patients to maintain health behaviors, and this in turn can improve health outcome. The use of interventions which develop patient activation rather than those which focus on specific behaviors (self-efficacy) may be more useful. This may include tailoring approaches to care based on the levels of patient activation. For example, motivational coaching, along with problem-solving skills and social support, targeted for individuals with low activation levels may help them to understand, carry out, and maintain their role in self-managing their conditions over time [9,47]. We found only two studies [24,31] have showed the improvement in depression and anxiety scores. None of the included studies in our review mentioned any defined actions to address depression and anxiety in the SMI. Therefore, this finding of the review should be interpreted with caution.
Self-management programs need to be guided by learning and behavior-change theories that can be tailored to a population's needs, taking into account literacy, confidence level, ethnic, cultural, and cognitive factors [48]. Interventions aimed at delivering health literacy assume constructing skills for understanding the conditions and relevant information can empower patients, while those aimed at patient activation assume encouragement/motivation standalone can bring positive outcomes [49]. Three of the included studies measured the effect of health literacy, while none measured the effect of patient activation on self-management skills among patients with COPD. Emerging scientific evidence suggests that addressing both health literacy and patient activation components in one intervention might result in better adherence to self-management behaviors in COPD patients [50][51][52]. Motivational and cognitive-behavioral elements and health coaching have been found to be powerful strategies in helping the patient to become a "successful self-manager" [37,53,54]. Thus, the clear understanding between HL and PA, as well as their independent roles and benefits, could help in achieving effective self-management of COPD.
An inherent limitation of this review was the lack of meta-analysis because the intervention and outcome measurements were too heterogeneous. Although multiple databases were searched, using MeSH terms, the search may not have yielded all published relevant studies, given the variation in terminology for "self-management", "health literacy", and "patient activation".

Conclusions
This review provided insights into how frequently SMI includes features that address health literacy and patient activation. HL interventions were not comprehensive (largely confided to health education) and PA interventions with improving self-efficacy. This suggests the need to further evaluate the impact of comprehensive self-management interventions, which include elements which address both health literacy and patient activation on health outcomes for COPD patients.