Comments of Patient education and self-management support

What do we know?

 

To date there is no gold standard, universally accepted definition of self-management. Rather, several terms are used, sometimes interchangeably, depending on the context and focus of the discussion. Although generally they are meant to describe a similar phenomenon, the terms imply varying specification regarding attributes, roles and responsibilities of both people with chronic health conditions and health care providers. Adams, Grenier, and Corrigan (5, p.57) define self-management as the tasks that an individual must undertake to live well with one or more chronic conditions. These tasks include gaining confidence to deal with medical management, social management, and emotional management.

This definition envisions self-management as behaviors, but includes the notion of confidence and embraces clinical management as well as role and emotional management by the individual. Using this definition someone who is engaged in selfmanagement:

- Has knowledge of his/her condition and/or its management.

- Adopts a care plan agreed and negotiated in partnership with health professionals.

- Actively shares in decision-making with health professionals.

- Monitors and manages signs and symptoms of his/her condition.

- Manages the impact of the condition on physical, emotional, occupational and social functioning.

- Adopts lifestyles that address risk factors and promotes health by focusing onprevention and early intervention.

- Has access to, and confidence in, the ability to use support services (6).

This definition of self-management provides clarity in that it focuses on the person with the chronic conditions, and further introduces the concept of self-management support, which specifies what health care providers can do to encourage self-management (5). Self-management support is defined as the systematic provision of education and supportive interventions by health care staff to increase patients’ skills and confidence in managing their health problems, including regular assessment or progress and problems, goal setting, and problem-solving support (p.57).

By articulating self-management as behaviors and confidence to deal with medical, role, and emotional management and by using the term self-management support to describe what health care providers can do to facilitate this, Adams et al. (5) have brought greater clarity to the picture.

Another factor supporting the decision to use this definition of self-management is that it is congruent with the concept of self-management support incorporated into the Chronic Care Model (7) (Chapter 4).

The model involves two overlapping realms, the community and the health care system, with self-management support as one of the four essential components within the health care system (3). Self-Management / Develop Personal Skills refers to the support of self-management in coping with a disease, but also to the development of personal skills for health and wellness (8).

Ultimately, the model posits that when Informed, Activated Patients interact with a Prepared, Proactive, Practice Team the result is improved Functional and Clinical Outcomes. To encourage these outcomes, health authorities provide inputs to strengthen and maximize the efficiency of each component including Self-Management Support.

Difference between patient education and self-management education 

Traditionally, patient education has involved the provision of disease-specific information, teaching specific disease-related skills (e.g., how to monitor glucose levels and how to use asthma medication), and contingency planning (i.e., what to do if a situation occurs). Self-management focuses more on teaching generalized skills that patients could use to manage their condition and includes learning how to solve problems, using community resources effectively, working with one’s health care team, and how to initiate new behaviors. The major differences between patient education and self-management education have been outlined by Bodenheimer, Lorig, Holman, and Grumbach (3):

- Traditional patient education provides information and teaches technical diseaserelated skills whereas self-management teaches skills on how to address problems.

- Problems covered in traditional patient education reflect widespread common problems related to a specific disease, whereas the problems covered in selfmanagement education are identified by the patient.

- Traditional patient education is disease-specific and offers information and technical skills related to the disease. In contrast, self-management education provides problem-solving skills that are relevant to the consequences of chronic conditions in general.

- Traditional patient education is based on the underlying theory that disease-specific knowledge leads to behavioral change, which in turn produces better outcomes.
Self-management education, meanwhile, is based on the theory that greater patient
confidence in his/her capacity to make life-improving changes yields better clinicaloutcomes.

- The goal of traditional patient education is compliance, whereas the goal in self management education is increased self-efficacy and improved clinical outcomes.

- In traditional patient education the health professional is the educator, but in selfmanagement education then educators may be health professionals, peer leaders or other patients.

Both activities are, however, essential in assisting patients achieve the best quality of life and independence. While necessary, traditional disease-specific patient education is generally not sufficient for people to manage a lifetime of chronic disease care (9-12).

It is important to emphasize, however, that modern approaches to patient education, particularly outside the English-speaking world, are practically indistinguishable from self-management. This, and the risk of confusion generated by the emergence of new terms, is illustrated by the coining of such expressions as «therapeutic patient education» (TPE), which is defined by the WHO as a set of structured activities which involves «helping the patient and his family to acquire knowledge and competencies on the disease and its treatment, in order to better collaborate with the caregivers, and to improve his quality of life» (13). While increasing knowledge is one important aspect of this approach, its main aim is to increase awareness of the issues that patients face and must manage, and to motivate them to incorporate self-management and selfcare behaviors in their daily lives, while addressing their own resistance to change and ambivalence and working with health professionals as partners and coaches. There is evidence that TPE can result in a number of benefits to the patient, including better quality of life, greater therapeutic compliance, a reduction in complications, decreased anxiety and a reduction in the number of acute or emergency situations (14). In any case, there is strong evidence that using behavioral strategies that teach self-directed goal-setting and action-planning, problem-solving, healthy coping, stress management, self-monitoring and skills to link to community resources improves outcomes (10, 15). There is also evidence that using more than one of these strategies increases program
effectiveness (12, 15-17).

The evidence strongly makes the case that the best type of education for patients experiencing chronic health conditions should include: a) disease-specific education; b) general managing skills (e.g., problem-solving, finding and using resources, working with a health care team); c) use of strategies that increase patients’ confidence (i.e.,self-efficacy) in their ability to engage in behaviors needed to manage their condition on a daily basis; and d) adequate peer role models and support networks that help in the initiation and maintenance of the desired behavioral changes.

 

Delivering self-management support 

Self-management support can take place on a one-to-one basis between the patient and health care professional, or in group settings led by either health providers or lay persons. These activities could take place in person or through Web-based interactive technologies.

In recent years, the main task of managing one’s chronic health condition has been shifting to the patient, yet considerable responsibility still lies with health care professionals who can use their expertise to inform, activate and assist patients in the self-management of their condition.

Self-management interventions are delivered in a variety of settings; according to Barlow et al. (18) the most popular locations in which health professionals deliver programs are clinical settings (e.g., hospitals). Today a greater emphasis is being placed on health care professionals delivering self-management support and using behavioral techniques during routine clinical visits to enhance patients’ abilities to be effective selfmanagers.

Self-management support provided by health care professionals

The 5As

One unifying conceptual framework used on a one-to-one basis or in groups by health care professionals is known as the 5 As construct (19). The 5 As are Assess, Advise, Agree, Assist and Arrange. Basically, this is a set of behavioral strategies to encourage patients to engage in self-management, including:

- Establishing rapport with patients to ensure that patients have opportunities toexpress their priority concerns.

- Setting a visit agenda with patients to ensure that both health professionals’ and the patients’ concerns are addressed in the visit.

- Getting patients to complete a Health Risk Appraisal at home to provide an opportunity for patients to obtain independent objective information about their health and what they need to do to address these concerns. The information can be discussed with the health professional.

- Assessing patients’ readiness to enable the health professionals to use appropriate behavioral change strategies.

- Considering the Ask-Tell-Ask strategy, a technique to ensure that patients get the information they are after, or the Closing the Loop technique, to ensure patients understand the information provided by health professionals.

- Getting patients to make Action Plans is the process by which patients specify a particular behavior they will engage in.

- Teaching the Problem-Solving Process which gives patients a systematic approach to solve problems when they arise in their daily lives.

- Ensuring that follow-up takes place, facilitating the success of action plans.

These activities, which are not necessarily linear with each step following the other sequentially, have been applied to primary care interventions for a variety of behaviors (20-22).

The goal of the 5 As is to develop a personalized, collaborative action plan that includes specific behavioral goals and a specific plan for overcoming barriers and attaining those goals. The 5 As are interrelated elements and are not designed to be used in isolation, and better results will be achieved if a combination of interventions is employed, especially for complex cases (23).

Professional Associations and major hospitals have used the 5 As construct as the basis of their evidence-based best practice guidelines in providing self-management support to adults with chronic health conditions (24) and in caring for children experiencing chronic health conditions (25).

Motivational Interviewing

Motivational interviewing (MI) is a patient-centered, directive method of communication used throughout self-management support with the goal of enhancing motivation to change behavior by exploring and resolving ambivalence (26, 27). With the widespread dissemination of a complex innovation such as MI it is likely that reinvention may take place reflecting practitioners’ particular understanding and style, and this reinvention may further add or remove critical elements. Miller and Rollnick (28) provide clarity with respect to what MI is and is not, specifically:

- MI is collaborative and person-centered.

- MI incorporates reflective listening to guide the resolution of ambivalence about change.

- MI is intended to enhance patients’ motivation for change (change talk) and does not need to be based on the trans-theoretical model of change (i.e., Pre-contemplative Stage).

- MI honors the patients’ autonomy and should never be used to coerce them into doing what you think they should.

- MI is a complex clinical skill that requires practice to increase proficiency, rather than a formula to be followed step by step.

- MI is a method to elicit solutions from the patient, rather than providing solutions for them in the belief that they lack something needed for success.

- MI is not necessary if the patient is ready for change.

A recent meta-analysis by Rubak (29) evaluated the effectiveness of using MI with patients who had various diseases. They found that MI produced significant effects in some areas (body mass index, total blood cholesterol, systolic blood pressure) but not in others (cigarettes smoked per day and A1C levels).

Lewin et al (30) recommended that MI be used to counsel patients/families on health behavior change. MI can be effective in brief encounters of fewer than 15 minutes, although the dose of effectiveness is individualized, assuming that increased use improves the likelihood of favorable outcomes (28). Meanwhile, some studies have shown greater efficiency when combined with other treatment methods (31). MI outperforms traditional advice-giving for a broad range of behavioral problems and diseases in approximately 80% of studies (29).

Studies show that any appropriately trained health professional (e.g., physician, nurse, psychologist or dietician) can successfully use MI skills with his or her patients (29). Miller and Rollnick (28) recognize that most health care professionals learn about motivational interviewing through self-study or in short one- or two-hour workshops, and state that although this clinical method is simple, it is not as easy to master, requiring repeated practice with feedback and encouragement from knowledgeable guides to facilitate both skill and comfort of use.

Despite the promise that the technique holds for promoting behavioral change, there are few controlled studies evaluating its efficacy with health problems (32, 33). This point of view is consistent with that of Bodenheimer and Grumbach (34) that the effectiveness of MI in enhancing physical activity and managing chronic illness is still inconclusive.


The Flinders Program (formerly the Flinders Model)

The Flinders Program (35) was developed at Flinders University in Adelaide, South Australia. This model enables the clinician to use measurement over time to track changes. It involves three main phases, namely:

- An assessment phase, which may involve using three tools: the Partners in Health Scale (36); the Cue and Response Interview, and the Problems and Goals Assessment Scale.

- The development of a self-management care plan where information elicited in the assessment is used to collaboratively develop an individualized self-management care plan. The plan includes the identified issues and key problem; the agreedupon goals, interventions, a sign-off for patient and clinician and review dates.

- Monitoring and review, initiated by the clinician and using the self-management care plan as its basis. The purpose is to help the patient maintain motivation, assist the patient with problem-solving and make changes in the plan if circumstances change.

Research has investigated specific elements of the Flinders Program (36, 37), and demonstration projects have investigated effectiveness when using the complete version. These pilots, part of the Australian Statewide Chronic Disease Self-Management Initiative, investigated diabetes in rural aboriginal communities (38); mental health (39), and patients in respiratory rehabilitation (40) and found encouraging outcomes, both statistically and clinically.

 

Self-management support provided by health professionals and patients 

The most familiar and common way that evidence-based self-management support is delivered is through the specially designed programs that emerged during the last decade. These include both disease-specific and generalized programs led by health care professionals as well as by lay people (11, 41-43). A cursory review of recent literature reveals a growth in the development, scope, and evaluation of these programs and includes programs for: adults and children with asthma (44-46), cancer (47), COPD (48), HIV (49), bulimia nervosa (50), chronic kidney disease (51), congestive heart disease (52), dementia (53), low vision (54), macular degeneration (55), mental health (56), and stroke (57). In addition, the US National Council on Aging has also recommended several evidenced-based programs which include: Chronic Disease Self-Management Program (42), Enhanced Wellness (58), Enhanced Fitness (59), Active Choices (60), Active Living Every Day (61), Strong for Life, A Matter of Balance (62), Healthy IDEAS (63), Prevention & Management of Alcohol Problems in Older Adults: A Brief Intervention (64). These programs have been shown to be effective across a wide range of settings for people with many different types of disease and for people from different cultures and socioeconomic groups (65).

A comprehensive review of the strengths and weaknesses relating to program settings, using professional or lay leaders, using disease-specific or generic programs, and group or individual programs, has been published by McGowan and Lorig (66).

These self-management programs provide basic information, teach specific skills, and use strategies to increase patients’ confidence in their ability to manage their condition (67). Specific skills include: a) Problem-solving (learning to identify a problem, generate possible solutions, implement a solution, and evaluate the results); b) Decision-making (learning how to identify warning signals when caring for their symptoms, having suitable guidelines to follow, and making appropriate choices to manage their symptoms properly; c) Resource utilization (learning how to find and use resources effectively); d) Patient -provider relationships (learning how to build relationships with health care providers); and e) Taking action (learning how to implement a specific behavior in order to achieve a goal. Patients learn to do this by making short-term, realistic and achievable action plans). Action plans are a useful resource for acquiring knowledge and for promoting health-enhancing habits, particularly when they enable patients to identify key symptoms and interventions to relieve these, and include tips on how to solve common problems
and to deal with crises.

Self-management programs usually employ several strategies to increase the patient’s self-efficacy in implementing a specific behavior at a future point in time. Bandura (68) defined self-efficacy as people’s judgments of their capabilities to organize and execute the courses of action required to attain designated types of performance (p.391). The key contention regarding the role of self-efficacy beliefs is that «people’s level of motivation, affective states, and actions are based more on what they believe than on what is objectively true» (69). The process of developing long- and short-term goals, which is known as Guided Mastery, serves as the major means for developing and expanding behavioral competencies (68), and is an effective technique for raising individuals’ self-efficacy. Other self-efficacy enhancing strategies used in the group programs include: modeling (i.e., persons with chronic health conditions leading the program); reinterpreting physiological signs and symptoms, and persuasion.

One comprehensive framework helpful in planning and evaluating the impact of self-management programs and which considers several stages of knowledge development and dissemination is the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) framework (4, 70). The five dimensions of RE-AIM build on conceptual work by Rogers (71) and Green and Kreuter (72) and focus on the following:

- Reach (proportion and representativeness of the target population willing to participate).

- Effectiveness (impact of the program in terms of outcomes and quality of life).

- Adoption (proportion and representativeness of organizations and staff agreeing to deliver the program).

- Implementation (degree to which interventions are delivered consistently as planned across staff, patients, program components, and time).

- Maintenance (extent to which behavioral change is maintained over the longer term and, at the setting level, the extent to which the program is maintained by the organization).

Traditional evaluations have mainly focused on only one or two dimensions, from knowledge development to dissemination. Examining all five dimensions yields a more thorough evaluation, thus giving decision-makers more information on which to base their decision to adopt or discontinue a program. The Stanford Patient Education Research Center has satisfactorily addressed the RE-AIM factors in that these programs have been around since the mid 1980s and are currently being delivered in approximately 20 countries. These self-management programs have undergone randomized controlled trials (41-42, 73), dissemination studies (74), follow-up and cost analysis studies (16), and have demonstrated external validity through successful implementation, producing similar results in different countries and with different populations (75-80). 

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