Self-Injection Difficulties in Patients With Relapsing-Remitting MS
Self-Injection Difficulties in Patients With Relapsing-Remitting MS
Difficulties with self-injection, including inability to self-inject, are common for individuals taking home-administered injectable medications. In relapsing-remitting multiple sclerosis (MS), all of the currently available disease-modifying medications are injectables marketed for self-injection. Problems with self-injection pose a barrier to treatment adherence for many patients. Clinicians at the University of California, San Francisco (UCSF) Multiple Sclerosis Center have developed a number of strategies to help patients who experience anxiety associated with self-injection. These strategies have been empirically tested and found to be effective and easily implemented by mental health professionals and nurses. This article offers case examples and discussion of the principles of the techniques developed at UCSF to remediate patients' difficulties with self-injection. Nurses are most often the healthcare providers responsible for training MS patients in self-injection and monitoring their compliance. Nurses who are familiar with these tools have the opportunity to have a significant positive impact on patient comfort, confidence, and, ultimately, successful long-term adherence to disease-modify-ing medications.
Most patients dislike injections, particularly self-administered injections. Common reactions include anxiety, fear, avoidance, autonomic reaction, and disgust. In some cases, patients' reactions make it extremely difficult or impossible to receive injections. These patients may meet criteria for the Diagnostic and Statistical Manual of Mental Disorders diagnosis Specific Phobia Blood/Injection Type (American Psychiatric Association [APA], 1994). This phobia is fairly common, with an estimated prevalence of 7%-22% in the general population (Agras et al., 1969; APA; Bienvenu & Eaton, 1998; Cartwright et al., 1993; Costello, 1982). The diagnosis is generally more common in pediatric patients. Treatment regimens that require more frequent injections are more likely to be associated with injection anxiety (Mohr, Bondewyn, Likosky, Levine, & Goodkin, 2001). In general, injection anxiety decreases over time, with increased exposure to injections in the course of routine immunization and illness and with increased ability to control the circumstances of medical care as an adult.
Many adults can receive injections administered by others with minimal difficulty and discomfort, but they experience significant levels of anxiety if they are required to self-inject. This anxiety poses a barrier to treatment for multiple sclerosis (MS), because the patient becomes dependent on others to administer injections. Self-injection allows the patient maximum independence and reduces the risk of missed injections or drug discontinuation due to unreliable injection assistance.
There are four self-injectable treatments for relapsing-remitting MS (RRMS) that slow disease progression. Interferon beta-1b (IFNβ-1b; Betaseron) and glatiramer acetate (Copaxone) are approved for subcutaneous (SC) administration. Interferon beta-1a (IFNβ-1a) is approved for SC administration (Rebif 22 mcg or 44 mcg ) and intramuscular (IM) administration (Avonex 30 mcg); (Durelli et al., 2002; Jacobs et al., 1996; Johnson et al., 1995; IFNB Multiple Sclerosis Study Group, 1993). These medications require injection daily (glatiramer), every other day (IFNβ-1b), three times a week (IFNβ-1a SC), or weekly (IFNβ-1a IM).
Adults who are unable to self-inject may be at risk for poor treatment adherence. In a study of patients initiating IM IFNβ-1a treatment, half experienced self-injection anxiety sufficient to prevent self-injection. Self-injection anxiety and a belief that one could not self-inject were the strongest predictor of drug discontinuation at 6 months (Mohr et al., 2001). Because reduced adherence to therapy can lead to reduced efficacy of treatment, there is a need to manage self-injection anxiety in patients with MS.
At the University of California, San Francisco (UCSF) Multiple Sclerosis Center, we encounter numerous patients who present with self-injection difficulties. Some report self-injection anxiety at the initiation of treatment. Others report that they were able to self-inject successfully for months or years before they developed anxiety. Such difficulties have been observed regardless of the type of disease-modifying treatment.
Multiple factors can contribute to the inability to self-inject. Many patients are misinformed about the risks of self-injection and believe it to be unsafe or even potentially life-threatening. Others are misinformed about how best to manage injection pain and side effects.
Many patients experience autonomic reaction, including vasovagal responses, and misinterpret these sensations as dangerous. We also found that many patients have distorted beliefs about the injection and the meaning of the injection in their lives. Specifically, patients begin to consider the injection to be a burden associated with their disease, rather than the way to best manage their disease. For these patients, disconnecting the experience of the injection from the experience of living with MS is often necessary to allow self-injection. Almost all patients with self-injection difficulties reported some feeling or belief that self-injecting means "I really have MS" or "I'm allowing the MS greater control of my life."
Current RRMS treatment recommendations strongly encourage that treatment be started immediately following definitive diagnosis (Comi et al., 2001; Jacobs et al., 2000; Kinkel et al., 2004). Therefore, many patients who start injectable therapy are experiencing few or no MS symptoms. As such, patients often feel injections are a reminder of the disease. Patients need help accepting their diagnosis and understanding the need for treatment. This help is crucial for long-term adherence to medication, which appears to be crucial for good long-term outcome.
At UCSF, we developed a six-session cognitive-behavioral treatment for self-injection anxiety. This model has been tested and found to be effective when either psychologists or nurses are providers. The trials have been described elsewhere (Cox, Mohr, & Epstein, 2004; Mohr, Cox, Epstein, & Bondewyn, 2002, 2005). However, we think additional case examples that demonstrate specific principles used in the treatment of self-injection anxiety may prove useful for providers who are considering implementing this method. Our model and examples were developed for patients with RRMS. However, these principles can be applied to patients on any injectable medication who have difficulty self-injecting.
Nurses are responsible for most self-injection training, and, in many settings, nurses play a major role in managing difficulties with adherence. It is our hope that the principles we have developed will prove useful for nurses who care for patients who must self-inject and will help patients and their care providers maintain strong adherence to necessary therapies.
Abstract and Introduction
Abstract
Difficulties with self-injection, including inability to self-inject, are common for individuals taking home-administered injectable medications. In relapsing-remitting multiple sclerosis (MS), all of the currently available disease-modifying medications are injectables marketed for self-injection. Problems with self-injection pose a barrier to treatment adherence for many patients. Clinicians at the University of California, San Francisco (UCSF) Multiple Sclerosis Center have developed a number of strategies to help patients who experience anxiety associated with self-injection. These strategies have been empirically tested and found to be effective and easily implemented by mental health professionals and nurses. This article offers case examples and discussion of the principles of the techniques developed at UCSF to remediate patients' difficulties with self-injection. Nurses are most often the healthcare providers responsible for training MS patients in self-injection and monitoring their compliance. Nurses who are familiar with these tools have the opportunity to have a significant positive impact on patient comfort, confidence, and, ultimately, successful long-term adherence to disease-modify-ing medications.
Introduction
Most patients dislike injections, particularly self-administered injections. Common reactions include anxiety, fear, avoidance, autonomic reaction, and disgust. In some cases, patients' reactions make it extremely difficult or impossible to receive injections. These patients may meet criteria for the Diagnostic and Statistical Manual of Mental Disorders diagnosis Specific Phobia Blood/Injection Type (American Psychiatric Association [APA], 1994). This phobia is fairly common, with an estimated prevalence of 7%-22% in the general population (Agras et al., 1969; APA; Bienvenu & Eaton, 1998; Cartwright et al., 1993; Costello, 1982). The diagnosis is generally more common in pediatric patients. Treatment regimens that require more frequent injections are more likely to be associated with injection anxiety (Mohr, Bondewyn, Likosky, Levine, & Goodkin, 2001). In general, injection anxiety decreases over time, with increased exposure to injections in the course of routine immunization and illness and with increased ability to control the circumstances of medical care as an adult.
Many adults can receive injections administered by others with minimal difficulty and discomfort, but they experience significant levels of anxiety if they are required to self-inject. This anxiety poses a barrier to treatment for multiple sclerosis (MS), because the patient becomes dependent on others to administer injections. Self-injection allows the patient maximum independence and reduces the risk of missed injections or drug discontinuation due to unreliable injection assistance.
There are four self-injectable treatments for relapsing-remitting MS (RRMS) that slow disease progression. Interferon beta-1b (IFNβ-1b; Betaseron) and glatiramer acetate (Copaxone) are approved for subcutaneous (SC) administration. Interferon beta-1a (IFNβ-1a) is approved for SC administration (Rebif 22 mcg or 44 mcg ) and intramuscular (IM) administration (Avonex 30 mcg); (Durelli et al., 2002; Jacobs et al., 1996; Johnson et al., 1995; IFNB Multiple Sclerosis Study Group, 1993). These medications require injection daily (glatiramer), every other day (IFNβ-1b), three times a week (IFNβ-1a SC), or weekly (IFNβ-1a IM).
Adults who are unable to self-inject may be at risk for poor treatment adherence. In a study of patients initiating IM IFNβ-1a treatment, half experienced self-injection anxiety sufficient to prevent self-injection. Self-injection anxiety and a belief that one could not self-inject were the strongest predictor of drug discontinuation at 6 months (Mohr et al., 2001). Because reduced adherence to therapy can lead to reduced efficacy of treatment, there is a need to manage self-injection anxiety in patients with MS.
At the University of California, San Francisco (UCSF) Multiple Sclerosis Center, we encounter numerous patients who present with self-injection difficulties. Some report self-injection anxiety at the initiation of treatment. Others report that they were able to self-inject successfully for months or years before they developed anxiety. Such difficulties have been observed regardless of the type of disease-modifying treatment.
Multiple factors can contribute to the inability to self-inject. Many patients are misinformed about the risks of self-injection and believe it to be unsafe or even potentially life-threatening. Others are misinformed about how best to manage injection pain and side effects.
Many patients experience autonomic reaction, including vasovagal responses, and misinterpret these sensations as dangerous. We also found that many patients have distorted beliefs about the injection and the meaning of the injection in their lives. Specifically, patients begin to consider the injection to be a burden associated with their disease, rather than the way to best manage their disease. For these patients, disconnecting the experience of the injection from the experience of living with MS is often necessary to allow self-injection. Almost all patients with self-injection difficulties reported some feeling or belief that self-injecting means "I really have MS" or "I'm allowing the MS greater control of my life."
Current RRMS treatment recommendations strongly encourage that treatment be started immediately following definitive diagnosis (Comi et al., 2001; Jacobs et al., 2000; Kinkel et al., 2004). Therefore, many patients who start injectable therapy are experiencing few or no MS symptoms. As such, patients often feel injections are a reminder of the disease. Patients need help accepting their diagnosis and understanding the need for treatment. This help is crucial for long-term adherence to medication, which appears to be crucial for good long-term outcome.
At UCSF, we developed a six-session cognitive-behavioral treatment for self-injection anxiety. This model has been tested and found to be effective when either psychologists or nurses are providers. The trials have been described elsewhere (Cox, Mohr, & Epstein, 2004; Mohr, Cox, Epstein, & Bondewyn, 2002, 2005). However, we think additional case examples that demonstrate specific principles used in the treatment of self-injection anxiety may prove useful for providers who are considering implementing this method. Our model and examples were developed for patients with RRMS. However, these principles can be applied to patients on any injectable medication who have difficulty self-injecting.
Nurses are responsible for most self-injection training, and, in many settings, nurses play a major role in managing difficulties with adherence. It is our hope that the principles we have developed will prove useful for nurses who care for patients who must self-inject and will help patients and their care providers maintain strong adherence to necessary therapies.
