Journal of Neuroscience Nursing:
Factors That Influence Adherence and Strategies to Maintain Adherence to Injected Therapies for Patients With Multiple Sclerosis
Saunders, Carol; Caon, Christina; Smrtka, Jennifer; Shoemaker, Jennifer
Christina Caon, MSN NP-C, is an assistant director of clinical research at the Multiple Sclerosis Center at Wayne State University School of Medicine, Detroit, MI.
Jennifer Smrtka, ANP-BC MSCN, is a board certified adult nurse practitioner and an IOMSN certified MS nurse at the Ft. Lauderdale MS Center, Pompano Beach, FL.
Jennifer Shoemaker, PhD, Expert Medical Education, Washington, DC.
Questions or comments about this article may be directed to Carol Saunders, RN MSCN, at firstname.lastname@example.org. She is in private practice in Oceanside, CA.
This supplement was supported by a grant from Teva Neuroscience. Expert Medical Education contributed to the editorial refinement of this article and to the production of this supplement. Authors may have accepted honoraria for their supplement contributions.
A key aspect of the management of care for patients with multiple sclerosis (MS) is identifying which patients are struggling with adherence. Disease-modifying therapies for the treatment of MS are primarily preventative, with modest efficacy, and they can possibly cause significant side effects. These factors can lead patients to stop taking their medication because they continue to experience symptoms or relapses of the disease, and/or they have painful injection-site reactions on most parts of their bodies. However, striving for 100% adherence to the prescribed treatment regimen remains the goal and is the surest way to reap all the benefits associated with immunomodulatory therapy. Building trust, promoting injection self-efficacy, and educating patients about proper injection techniques to prevent injection-site reactions have the greatest impact on patient adherence. Factors including family involvement, financial stability and support, hope, and faith can also have a positive impact on adherence. Identifying patients who may be struggling with depression, which is easily treatable but often not well addressed, and providing access to mental health services are important. Although many strides have been made with regard to MS patient care, outlining strategies that can maintain or encourage adherence can provide practitioners with tools to facilitate their patients' health and well-being.
Optimizing the benefits of injectable therapies in multiple sclerosis (MS) relies on consistent use. Therefore, an integral part of coordinating the care of MS patients is identifying risk factors that may stop a patient from continuing his or her medication. Compliance is the extent to which the patient's behavior coincides with the clinical prescription (Namey, 2007). In contrast, adherence is the ongoing active, voluntary, and collaborative involvement of the patient, resulting in a mutually acceptable course of behavior that helps maintain a desired, preventative, or therapeutic outcome (Namey, 2007).
Adhering to injectable therapies used to treat MS is a constant balancing act. No patient's disease or life remains static, and every patient experiences the disease and reacts to its treatment in different ways. Patients have different perspectives on the basis of what is currently going on in their lives, and even tightly held attitudes and perceptions may change over time. Clinicians have the delicate task of nurturing the dialogue that can ultimately encourage patients and their care partners to adhere to the recommended therapies that, in the short term, are at best a nuisance but, in the long term, can significantly reduce the severity of the disease. Convincing patients to remain motivated to push beyond the mental fatigue of injections, side effects, and injection-site reactions (ISRs) can be challenging, and these challenges have a major impact on adherence. Tangible factors such as family structure, support, lifestyle, and economic stability as well as more subjective concepts such as the presence or absence of hope, faith, trust in healthcare practitioners, depression, and self-efficacy have also been identified as major influences on patient adherence to disease-modifying therapy (DMT) for MS. These factors are discussed herein.
When a patient is told that he or she definitively has MS, that moment is life altering. Many patients remember the exact day and can vividly recall the experience. This profound moment provides healthcare providers with an opportunity to shape the clinician-patient relationship. Patients have indicated that calmly explaining the condition, maintaining eye contact, and being completely focused on the patient shows a willingness to spend time with them, which lays the foundation for relationship building and sends the message that they are not alone. Conversely, a poorly delivered diagnosis can preemptively damage this relationship and put patients on the defensive. Healthcare providers who encounter patients who have had such experiences may have to overcome a rocky beginning and work even harder to gain patients' trust. Each individual responds to the MS diagnosis in a unique way. The response can be influenced by age, gender, educational background, and prior exposure to others who have suffered from chronic diseases. Keeping this in mind, clinicians must realize that expecting patients to absorb their diagnoses while also interpreting new information intelligently enough to make a treatment decision can be overwhelming.
Newly diagnosed patients are confronted with making choices that will affect their long-term quality of life and the state of their health. As healthcare practitioners guide their patients through this phase, repeated exposure to information is important to give patients several opportunities to really understand the diagnosis and their treatment options (Table 1).
DMT Administration Regimens and Side Effects
The injection regimens for DMTs vary, and the frequency of injections can be an adherence factor for patients who are making decisions about their preferred treatment option. Side effects associated with DMTs-including flu-like symptoms, depression, ISRs, and fatigue-are very real and can lead to discontinuation of therapy. Traveling with DMTs may require special storage considerations to maintain adherence, and careful consideration of these differences is important for patients who regularly deviate from their normal routine. DMTs such as glatiramer acetate (Copaxone, 2009), prefilled syringes of intramuscular (IM) interferon (IFN) β-1a (Avonex, 2008), and subcutaneous (SC) IFN β-1a (Rebif, 2009) are normally refrigerated, but patients should be made aware that they can be stored at room temperature for 30 days (except IM IFN β-1a prefilled syringes, which can be stored at room temperature for 7 days), if they decide that it is more convenient. However, if patients decide to forgo refrigeration of their medication within these guidelines, the medications should still be protected from heat and light. To avoid any trouble at the airport, healthcare practitioners should provide patients who are flying with an extra copy of their prescription, in case there is a need to replenish their supply, as well as to provide evidence of their need to carry DMTs. Patients should keep their medication in its original packaging to be inspected by airport security and to facilitate its clearance. Disposing of used syringes may be another concern for patients. If the hotel, airline, or airport does not provide a disposal service, patients can carry a small sharps container or use a small detergent bottle or food storage container with a tight lid. Patients who are traveling should also be encouraged to allow for rest days in their schedule to avoid fatigue and should plan in advance for potential changes in their dosing regimen between time zones.
Life disruptions such as job changes, marriage, and pregnancy; the development of acute illnesses such as the flu; or the development of chronic illnesses such as arthritis, heart disease, or diabetes can also affect a patient's adherence to an injectable medication (Table 1). In particular, pregnancy or planning to become pregnant has a direct impact on a patient's dosing regimen. None of the injected medications have been approved in pregnant or nursing women (Avonex, 2008; Betaseron, 2008; Copaxone, 2009; Extavia, 2009; Novantrone, 2008; Rebif, 2009; Tysabri, 2008), so nursing mothers or mothers-to-be should talk to their doctor about ceasing their DMT, and healthcare workers should talk to their patients about the appropriate time to reevaluate the recommencement of DMT.
Training patients to prevent the development of ISRs, which can be uncomfortable and annoying, can prevent MS patients from stopping their DMT injections. Preventable risk factors for ISRs include the following: not rotating the injection site, injecting the medication before it reaches room temperature, not protecting injections sites from sunlight, unsuitable needle length, and improper injection technique. However, even with proper preparation, ISRs can still occur. Although most ISRs are minor and resolve on their own, they can still cause people to avoid injecting their DMT. More serious ISRs, such as lipoatrophy and skin necrosis, are more severe side effects that can occur with glatiramer acetate as well as the subcutaneously injected interferons (Baum et al., 2007; Hashimoto, Ball, & Tremlett, 2009; Nakamura, Kawachi, Furuta, & Otsuka, 2008; O'Sullivan, Cronin, Sweeney, Bourke, & Fitzgibbon, 2006). Although most ISRs are mild and temporary, development of ulcerations and necrosis may require antibiotic treatment. Injection sites should be examined at each clinic visit (Table 1); patients should be encouraged to contact their care provider's office if they are experiencing any serious ISRs. Injection technique should also be reviewed on a regular basis (Table 1).
Patients who inject themselves as opposed to relying on someone else to inject have a higher adherence to their injected therapy (Fraser, Morgante, Hadjimichael, & Vollmer, 2004). Although 50% of MS patients expect that they will be unable to inject themselves over the long term, these expectations do not affect adherence (Mohr, Boudewyn, Likosky, Levine, & Goodkin, 2001). Another factor that may affect adherence can be positively influencing attitudes toward therapy. For example, switching the paradigm from "an injectable is something you do to yourself"-in which the patient is effectively victimized-to "this is something you do for yourself" can help patients regain empowerment, as they are effectively taking control of the situation. Until there is a better option, injection is the one thing patients have control over in a disease that often makes patients feel a loss of control.
About 7% to 22% of the general population has some type of needle phobia (Cox & Stone, 2006), and for MS patients, the fear of needles can be a major deterrent to adhering to therapy and can even develop in patients who have been injecting for a long time. Having a care partner who helps with injections or using an autoinjector device can help patients adhere more closely to their therapeutic regimen. Autoinjector devices may also reduce pain and prevent skin reactions resulting from SC injections. Recognizing and addressing needle phobia can improve self-efficacy. Healthcare professionals can train patients in cognitive-behavioral techniques such as deep breathing, muscle relaxation, and "reframing" thoughts to reduce anxiety about injections and to promote adherence. In this way, cognitive-behavior therapy can help to desensitize negative beliefs and feelings about injections or needles. There is also evidence to support that injection anxiety is an iatrogenic effect (induced by a physician's words or therapy) for a substantial percentage of MS patients who are prescribed injectable treatments (Mohr et al., 2001). At any rate, helping patients overcome their injection-related anxiety can help to improve their adherence.
At the other end of the spectrum, clinicians are also encountering more patients with a very high self-efficacy. This is seen in patients diagnosed with clinically isolated syndrome (CIS) suggestive of MS. These patients have had a clinical attack with abnormalities on magnetic resonance imaging (MRI) that are suggestive of MS. Patients with CIS are thought to be at the earlier stages of the disease and may be asymptomatic or have some residual symptoms of their initial attack still lingering. Brain MRI scans are performed to rule out other conditions, such as new onset of headaches. When abnormalities consistent with MS are detected and a diagnosis is confirmed despite the individual being relapse and symptom free, it can be difficult for him or her to accept the diagnosis and even more challenging to accept treatment. If a CIS patient or a patient incidentally diagnosed with MS is feeling well, convincing him or her to begin lifelong, self-injected therapy can be especially difficult. It also a challenge to convince such patients to keep in mind the goal of improving long-term outcomes, particularly if they are at all in denial of any disease process occurring. These challenges are not unique to the newly diagnosed patient; healthcare providers can also encounter similar difficulties with patients who have lived with the disease for years and feel well or have remained stable. Many of these patients are at risk for halting injectable therapy. On the other hand, patients experiencing a particularly acute exacerbation may be willing to try a variety of therapies, regardless of their potential side effects, and may be more easily convinced to remain on medication in the future.
Additional Adherence Barriers
Level of Trust in Healthcare Provider
Trust in the medical profession is a key indicator of patient involvement in the treatment of disease (Trachtenberg, Dugan, & Hall, 2005). Ideally, healthcare professionals want to ensure that their patients' needs are met while at the same time directing their care and setting realistic expectations. Attempting to navigate their care amidst the complex background of tests and scans, side effects, and cumbersome treatments, MS patients and their care providers have a tremendous task before them. MS patients may feel particularly vulnerable, and this vulnerability is associated with determining patient trust (Shenolikar, Balkrishnan, & Hall, 2004). Promoting the concept of a partnership can help to build trust between patients and their healthcare providers, which can ultimately lead to patients who are more willing to closely adhere to their treatment regimens and to their clinicians' recommendations (Hall, Camacho, Dugan, & Balkrishnan, 2002; Table 1). Trust can be forged with patients who are assertive or passive, and an assertive patient does not necessarily indicate distrust in the healthcare provider (Trachtenberg et al., 2005). Being comforting and caring, listening carefully, and encouraging questions and answering them clearly have all been associated with trust between the patient and his or her healthcare provider (Thom & Stanford Trust Study Physicians, 2001).
Listening to what patients have to say can provide experienced healthcare providers with insights into what does or does not bother patients about their current medication regimen (Table 1). Through early identification of patients who are more at risk to become nonadherent, clinicians can adjust in-person or telephone follow-up schedules to ensure that any difficulties associated with medications are addressed in a timely manner. Another important aspect of the healthcare practitioner-patient relationship is the way in which the practitioner presents himself or herself. By being approachable, clinicians become problem-solving partners with their patients. As an added benefit, patients will be more likely to be honest about their treatment adherence.
One of the difficulties associated with MS treatment is that there is no biological way to measure response to treatment. In the treatment of diabetes, blood sugar levels can be monitored, and in the treatment of hypertension, blood pressure can be measured. MS patients do not have the benefit of real-time feedback concerning their adherence to their treatment regimen. Without such responses, patients may be unsure whether their actions (and their adherence) affect the disease process. Thus, the connection between patient and healthcare team becomes even more important. The impact of treatment adherence in MS cannot be overstated. Vigilant check-ins with patients who may be struggling with adherence are useful. As a last resort, these check-ins may be followed up with a confirmation of pharmacy records.
Some patients may opt to come into a clinic to receive their injections. The social contact and connection involved in these clinic visits may itself influence adherence. The experience of the patient at the clinic extends beyond interactions with the doctors and nurses. The patient has contact with other professionals in the clinic, such as the physical therapist, the social worker, the medical assistants, the medical secretary, the clinic financial administrator, and the building support staff. These additional social interactions and connections can dramatically affect a patient's decision to return. It takes an entire team of people to provide a cohesive experience that assures an individual of the importance of his or her health.
Evaluating how effective a particular therapy is for any one individual can be difficult. Today, clinicians do not accept as much disease activity (either clinically or on MRI) as they did in the past. This may mean that patients will need to switch their therapy, and while most patients are willing to try a new therapy-particularly if the team is not happy with the results of the current treatment-there are patients who may be resistant to such a change, especially if they have been adherent and compliant to their original therapy. Introducing a new medication is an option they may not be prepared to even contemplate. For some patients, switching medications may seem like another obstacle to overcome. For others, a change can provide an immediate relief from nagging side effects. As a result, such a change may even increase adherence to treatment regimens. Patients may be more willing to accept a change in their medication if they notice a change in the course of their disease; even a small increase in disability level may lead patients to consider a switch. In addition, patients may be more likely to gravitate toward the most tolerable therapy, whereas clinicians may prefer the most efficacious treatments. Ultimately, the relationship between the patient and his or her healthcare team has a tremendous influence on a patient's adherence to a DMT.
A transition to the secondary-progressive form of MS can be particularly heartbreaking, especially in patients who have adhered to therapy and to their doctor's recommendations. However, this transition may also be a trust-building opportunity. To prevent patients from feeling like they might as well give up on treatment adherence, it is important to inform patients that disease course-describing categories (such as "relapsing-remitting" and "secondary-progressive") are used for the convenience of the healthcare team. Shifts in disease course do not necessarily describe a pathobiological milestone, and a new disease course description does not mean that a patient has passed an invisible (and often arbitrary) barrier.
Family Structure and Support
A diagnosis of MS affects the entire support structure of the patient. It is important to remember that individuals, couples, and families may have very distinct coping styles. Some try to absorb every piece of available information right away, whereas others may need to let the dust settle before deciding on the most appropriate treatment. Although the person with the disease is the patient undergoing treatment, healthcare professionals need to be sensitive to the fact that the entire family will live with this disease. As the concept of treatment is introduced, an environmental assessment of the entire family is useful to customize a treatment plan for each patient that will maximize adherence to medication and other therapies. Encouraging care partners to attend appointments with patients can be invaluable because care partners act as a second set of ears and can remind the patient exactly what the care team outlined in the treatment plan (Table 1). In addition, sometimes the body language of the care partners can provide important clues concerning the true adherence practices of the patient. Appointments are also an opportunity to inform care partners that certain aspects of the disease (such as fatigue) are not psychosomatic but are very real. These clarifications can significantly impact the quality of the relationships between family members. Ultimately, care partners and family members should be reassured that their partnership with the patient-centric members of the healthcare team is essential because their support, feedback, and love are necessary for the well-being of the patient.
If patients need to discuss their disease with their children, it can be a challenge to the existing family structure. However, such conversations can also bring families closer together (Table 1). Many parents worry about displaying vulnerability to their children; some fear that their authority may be undermined simply by their requests for physical and emotional support or that their children may see them as less responsible or capable. The boundaries surrounding the parent-child relationship may blur and change, which can alter the dynamics and test the depth of the relationship. However, these changes in parent-child relationships can also help to draw families closer together. Often, children who do not know much about MS may have the expectation that their parents are still fully reliable and are able to keep their existing schedule. In this case, parents may take on even more responsibility to try to maintain the status quo. Resentment can fester when these expectations are not met, and children kept in the dark may only be aware that their parents are fighting more than normal. Children can misconstrue these adjustments and may hold themselves responsible for negative consequences that stem from these changes. However, opening up emotionally and giving children a chance to participate allow room for them to take part in the physical and emotional processes of adaptation and adjustment. Children may also have questions for the healthcare team, such as "Was I the cause of these changes?," "Will I also have these changes?," and "Is my parent going to die?" Addressing these questions and their complex answers will, down the road, remove an enormous amount of pressure from all parties.
Healthcare practitioners should be culturally sensitive to patients and their families and should broach discussions that may alter family roles and structure very gently. For example, in households with traditional expectations and familial structures, the suggestion of equally distributing housework may not be acceptable. The loss of a person's role within the family is a major adjustment, and family members, especially husbands and wives, may need time to accept the changes.
Individuals in rural areas may also be at greater risk for nonadherence because they may have less frequent contact with healthcare providers. These patients may be handed a kit as they walk out the door after their diagnosis without much support. Although many pharmaceutical companies' programs provide support for a variety of issues, ultimately, the burden is overwhelmingly on patients as they attempt to navigate the coping and treatment processes. In addition, the Internet can provide more resources in this situation, but telemonitoring and online support groups may be more helpful online resources.
Support groups can be a tremendous resource for the patient as well as for the rest of the family, particularly early on in the disease process. Although some doctors may think that attending a support group may be too jarring for newly diagnosed patients, specialized groups geared toward this subgroup can be quite important because they do not expose these patients to MS patients with advanced disease right away. By pairing the newly diagnosed with patients who have lived with MS for several years, these groups help patients understand that it is possible to have meaningful life experiences while living with a chronic disease. More patients tend to be proactive about initiating therapy once they have attended new patient support groups (C. Saunders, direct observation).
Stability of Lifestyle
Changing personal or professional roles because of MS can affect patients dramatically. The idea of losing the ability to be productive and to provide an income, especially when the desire to accomplish these goals is still intact, can be frightening. Moreover, contemplating the disparity between what patients want to accomplish and what they can accomplish without exhausting themselves can evolve into thoughts of inadequacy and despair, which can lead to depression. A steady paycheck, food on the table, access to medication, and establishment of a stable routine all lead to better adherence. Instability in any form, from a reduced paycheck to an erratic daily life, can become a barrier to adherence.
In these troubled times, losing access to healthcare is a major obstacle to obtaining necessary medications. Losing a job or going through a divorce from a spouse who provides health insurance can put patients in the situation of having to choose between paying their mortgage and paying for their insurance or prescriptions. The healthcare team can help patients navigate this tumultuous terrain by educating patients (who may not qualify for other coverage programs) on how to tap into alternative resources, such as free assistance programs offered by pharmaceutical companies. Even without these catastrophic changes, small ones, such as a change in insurance-provider coverage, can be barriers to adherence. These small changes can have a domino effect, causing switches in care providers or a modified medication regimen, depending on which drugs are covered under the new insurance policy. Against the backdrop of individual and family issues, these changes can be hard on an individual patient and can have a major impact on treatment adherence.
In the workplace, patients may be hesitant to disclose their illness to their bosses or to ask for reasonable accommodations. Disclosing illness is stressful for MS patients because they fear disclosure will cause employers who initially viewed them as an asset to perceive them as nonpromotable or even as a liability. Employers may be concerned with whether the tasks the worker could accomplish previously will continue to be performed with equal aplomb. Many patients worry that asking employers to consider making practical and beneficial adjustments may be perceived by colleagues as making unreasonable requests. Because of these fears, patients can spend inordinate amounts of energy to maintain a level of productivity that is not sustainable over the long term. Although some employers are supportive of these types of requests, many employers have not been educated about practical steps to help accommodate employees with disabilities. Advocates for MS patients can do simple things, such as write letters to convince an employer to provide things like an extra air conditioner or ground-floor office space. Having a 20- to 30-minute break to rest during the afternoon can also impart a crucial benefit to patients. Because the work environment is social and collegial, patients may encounter initial resentment from coworkers, particularly if the coworkers are unaware of a patient's situation. Losing one's job is a vulnerable time for any patient, and treatment adherence is susceptible during and after this time. Conversely, after a relapse, MS sufferers may feel obligated to return to work sooner than is medically warranted for many reasons. Some do not want to lose their jobs, others have run out of family medical leave, and still others may feel pressure to continue to work the same hours as their colleagues. Educating patients and their families about these stressors and their possible solutions may lessen the impact of lapses in patients' injection schedules.
People who have not had a lot of exposure to the healthcare system previously may have expectations that more care will be provided than is realistically available. They may believe that insurance companies will cover all costs associated with MS, such as durable medical equipment, including canes, walkers, wheelchairs, and ramps. Others may have unrealistic expectations of the financial benefits afforded to people receiving Social Security Disability benefits. For instance, having a motorized chair to make it easier for patients to get out of the house would be ideal, but if the patient does not need the chair at all times (e.g., to also get around the house), most insurance companies will not provide the money. There is also a significant time gap between the application for disability payments that would help with necessities such as food and the actual receipt of these benefits.
Other economic challenges may result from issues related to mental health. For example, reimbursement for mental health services is crucial, as is treatment such as counseling to help to mentally cope with MS. Mental health can affect an individual's ability to seek and undergo treatment of chronic conditions (Lando, Williams, Williams, & Sturgis, 2006). Patients who are depressed are also more likely to feel pain (Kalia & O'Connor, 2005), which can impact patients' abilities or desires to adhere to disease-modifying therapies (DMTs). Patients have also reported a strong correlation between mental health and overall quality of life (which they view as being more important) compared with physicians who tend to be more concerned with physical health (Rothwell, McDowell, Wong, & Dorman, 1997).
For a lot of patients, the thought of injectable therapy for the rest of their lives can be overwhelming. One way healthcare providers can address these fears is first to remind patients that research is ongoing in this field and then to reassure them that there are newer therapies, some of which are taken orally, currently going through clinical trials. When these therapies become available, it is possible that they will be able to switch to a noninjectable therapy, and there is hope for pain- and phobia-free treatments. Also, because most injectable therapies have the most impact on the disease at its earlier stages, continuing on injectable therapy and taking "one day at a time" are currently the best options to combat this disease with the available tools. For chronically ill patients, merely the presence of a nurse or healthcare provider can provide hope (Morgante, 2000). Other methods, such as encouraging patients to constructively think about setting realistic goals or setting goals related to having fun, can help patients to think positively (Isaksson & Ahlstrom, 2008). Patients who reported having higher levels of hope were more likely to be adherent to their treatment (Treadaway et al., 2009). Thus, encouraging positive thinking, outlook, and activities can have a strong impact on adherence.
Tempering false expectations while encouraging hope regarding the efficacy of injectable treatments is another aspect of the patient-clinician relationship. Explaining that the purpose of these medications is to prevent disease progression, not to cure, can lessen feelings of despair if patients do end up having a relapse. An analogy can be made using the example of car insurance; just as purchasing car insurance does not make one a better driver, and paying for it does not provide any benefit until there is an accident, taking an injectable medication does not provide a benefit that is tangible in the everyday life of the patient. However, when a car accident does occur, insurance can be invaluable. Similarly, when a relapse occurs, these established treatments may reduce the relapse's severity, reduce the number of relapses in the long term, and prevent disease progression. Because of the variability and unpredictability of MS, expectations must continually be renegotiated. There is no way to set out a prognostic course that is 100% accurate for a patient at the time of diagnosis because disease course and progression are unique for every person. Therefore, management of MS must adapt as both the disease and the individual change over time.
Patients' belief in something larger than themselves can dramatically improve their ability to handle anxiety and to appreciate the day-to-day realities of life. Faith may help patients to accept that they are doing the best they can with their innate talents and strengths. Faith can also comfort patients with the belief that they are never alone. Sometimes patients believe that the therapy recommendations of the healthcare provider are not in line with the dictates of their faith or their spiritual leader. It is important not to challenge the personal beliefs of these patients but to encourage them to be open to continuous and honest dialogue.
Presence of Depression
The internal, psychological processing that MS patients go through has not been well defined, but what is known is that the presence of depression is high in the MS patient population and is the most important risk factor for suicide (Chwastiak & Ehde, 2007; Treadaway et al., 2009). Once recognized, depression can be treated, but healthcare providers may need to take the initiative (Table 1). A referral to a mental health practitioner is usually a delicate process because there is still a stigma attached to depression, which patients can be quite reluctant to discuss. Carefully broaching the subject by establishing that there is a biological component to depression and explaining that it is a treatable chemical imbalance that is commonly seen in MS, can make the conversation more palatable for patients. In fact, many patients may wait for the healthcare team to begin a discussion about depression. Showing concern by initiating a conversation about emotional struggles may promote a better working partnership with patients (White, White, & Russell, 2007). A lack of insurance coverage is a problem, particularly for patients who may want to talk to a therapist. However, studies have shown that merely being able to talk to a healthcare provider about emotional health can help patients to better understand MS and all of its symptoms (White, White, & Russell, 2007). MS organizations such as the National MS Society, the MS Foundation, and the MS Association of America provide online and community-based support and information to patients to optimize the various aspects of living with MS, including those that deal with emotions.
By nature, people are very resilient, and MS patients continue to live and to evolve despite (or even because of) their disease. The way people with MS evolve over time depends on their ability to cope with the uncertainties of the disease and the people who surround and care for them. Adherence is rarely 100%, but the goal for patients and their healthcare providers should be 100%. Acting in accordance with that goal is the daily challenge for both MS patients and the people who manage their care.
For the healthcare provider, communication is vital to uncover the greatest barriers to adherence, such as challenges posed by long-term self-injection and the side effects associated with DMTs. Economic hardships, job loss, depression, and a lack of support are additional barriers that can be alleviated if they are identified. By encouraging a nonjudgmental partnership, healthcare practitioners can allow their patients to open up and to confide in them more readily. This provides the MS team with a more accurate assessment of a patient's adherence. Awareness of the factors mentioned here can help clinicians to be aware of those patients who are most at risk of becoming nonadherent so that more routine appointments or telephone calls can be scheduled (Table 1). Table 2 provides a summary of factors that may influence a patient's adherence. The summary lists questions about these factors that may help a clinician identify potential risks to a patient's adherence. The questionnaire can be adapted, added to, and adjusted on the basis of the individual circumstances of each patient.
For the patient, keeping an open dialogue builds trust, instills hope, and educates about benefits he or she may be entitled to, which can tip the balance for individuals who may otherwise consider going off of their medication. Patients should be continually exposed to the same information in multiple settings and through multiple channels. Care partners from the immediate family are integral to the maintenance of adherence, and they should be encouraged to come to appointments, to seek support for themselves, and to be involved in the process of selecting the appropriate medication. The diagnosis of a family member with MS affects the entire family. Although the first instinct of a parent may be to shield children from the reality of MS, patients should be encouraged to talk openly with their family members and to allow them to step up and become involved in the new family life that includes MS as a formal constant. Although the responsibility to persistently inject DMTs rests with patients, by identifying issues leading to nonadherence, the healthcare team will be better equipped to encourage patients to adhere to therapeutic regimens.
Avonex® (interferon beta-1a) [Package insert]. (2008). Cambridge, MA: Biogen Idec, Inc.
Baum, K., O'Leary, C., Coret Ferrer, F., Klimova, E., Prochazkova, L., & Bugge, J. (2007). Comparison of injection site pain and injection site reactions in relapsing-remitting multiple sclerosis patients treated with interferon beta-1a or 1b. Multiple Sclerosis
Betaseron® (interferon beta-1b) [Package insert]. (2008). Montville, NJ: Bayer Healthcare Pharmaceuticals.
Chwastiak, L. A., & Ehde, D. M. (2007). Psychiatric issues in multiple sclerosis. Psychiatric Clinics of North America
Copaxone® (glatiramer acetate) [Package insert]. (2009). Kansas City, MO: Teva Neuroscience, Inc.
Cox, D., & Stone, J. (2006). Managing self-injection difficulties in patients with relapsing-remitting multiple sclerosis. Journal of Neuroscience Nursing
Extavia® (interferon beta-1b) [Package insert]. (2009). East Hanover, NJ: Novartis Pharmaceuticals Corporation.
Fraser, C., Morgante, L., Hadjimichael, O., & Vollmer, T. (2004). A prospective study of adherence to glatiramer acetate in individuals with multiple sclerosis. Journal of Neuroscience Nursing
Hall, M. A., Camacho, F., Dugan, E., & Balkrishnan, R. (2002). Trust in the medical profession: Conceptual and measurement issues. Health Services Research
Hashimoto, S., Ball, N. J., & Tremlett, H. (2009). Progressive lipoatrophy after cessation of glatiramer acetate injections: A case report. Multiple Sclerosis
Isaksson, A. K., & Ahlstrom, G. (2008). Managing chronic sorrow: Experiences of patients with multiple sclerosis. Journal of Neuroscience Nursing
Kalia, L. V., & O'Connor, P. W. (2005). Severity of chronic pain and its relationship to quality of life in multiple sclerosis. Multiple Sclerosis
Lando, J., Williams, S. M., Williams, B., & Sturgis, S. (2006). A logic model for the integration of mental health into chronic disease prevention and health promotion. Preventing Chronic Disease
Morgante L. (2000). Hope in multiple sclerosis: A nursing perspective. International Journal of MS Care
Mohr, D. C., Boudewyn, A. C., Likosky, W., Levine, E., & Goodkin, D. E. (2001). Injectable medication for the treatment of multiple sclerosis: The influence of self-efficacy expectations and injection anxiety on adherence and ability to self-inject. Annals of Behavioral Medicine
Nakamura, Y., Kawachi, Y., Furuta, J., & Otsuka, F. (2008). Severe local skin reactions to interferon beta-1b in multiple sclerosis-improvement by deep subcutaneous injection. European Journal of Dermatology
Namey, M. A. (2007). Promoting adherence to complex protocols. In J. Halper (Ed.), Advanced concepts in multiple sclerosis nursing care
(2nd ed., pp. 91-100). New York: Demos Medical Publishing.
Novantrone® (mitoxantrone) [Package insert]. (2008). Rockland, MA: EMD Serono, Inc.
O'Sullivan, S. S., Cronin, E. M., Sweeney, B. J., Bourke, J. F., & Fitzgibbon, J. (2006). Panniculitis and lipoatrophy after subcutaneous injection of interferon beta-1b in a patient with multiple sclerosis. Journal of Neurology, Neurosurgery, and Psychiatry
Rebif® (interferon beta-1a) [Package insert]. (2009). Rockland, MA: EMD Serono, Inc.
Rothwell, P. M., McDowell, Z., Wong, C. K., & Dorman, P. J. (1997). Doctors and patients don't agree: Cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis. British Medical Journal
Shenolikar, R. A., Balkrishnan, R., & Hall, M. A. (2004). How patient-physician encounters in critical medical situations affect trust: Results of a national survey. BMC Health Services Research
Thom DH, & Stanford Trust Study Physicians. (2001). Physician behaviors that predict patient trust. Journal of Family Practice
Trachtenberg, F., Dugan, E., & Hall, M. A. (2005). How patients' trust relates to their involvement in medical care. Journal of Family Practice
Treadaway, K., Cutter, G., Salter, A., Lynch, S., Simsarian, J., Corboy, J., et al. (2009). Factors that influence adherence with disease-modifying therapy in MS. Journal of Neurology
Tysabri® (natalizumab) [Package insert]. (2008). Cambridge, MA: Biogen Idec, Inc.
White, C. P., White, M., & Russell, C. S. (2007). Multiple sclerosis patients talking with healthcare providers about emotions. Journal of Neuroscience Nursing
© 2010 American Association of Neuroscience Nurses
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