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Compassionate care for patients with complex regional pain syndrome.

ABSTRACT

Complex regional pain syndrome (CRPS) is a debilitating condition characterized by specific symptoms such as intense pain and loss of function. This syndrome can be so devastating that it affects quality of life. Often, CRPS is misdiagnosed and misunderstood, which can be extremely frustrating for patients. The purpose of the survey in this study was to query actual patients living with CRPS to gain additional knowledge and suggestions to help improve their care. Respondents expressed a variety of emotions when asked about their healthcare experiences, which suggests that healthcare providers need to be better educated about CRPS so they can provide more compassionate care for patients trying to cope with this condition.

Keywords: compassion, complex regional pain syndrome, CRPS, pain

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Complex regional pain syndrome (CRPS) is a debilitating condition that can affect patients of any age. It is characterized by specific symptoms such as intense pain and loss of function that, in 90% of cases, occurs after a traumatic injury or surgery (Grieve & McCabe, 2012). It is multifactorial, and other symptoms include sensory, motor, and/or autonomic changes to the area (Hyatt, 2010). Although, in many cases, CRPS affects only one extremity, it can be so devastating that it affects the patient's quality of life (Van Eijs et al, 2010). Many times, CRPS is misdiagnosed and misunderstood, which can be very frustrating for patients. The purpose of the survey in this study was to ask actual patients living with CRPS for suggestions to help improve their care. Healthcare providers need to be educated about CRPS so they can show more compassionate care for patients living with this condition.

Background

CRPS, previously known as reflex sympathetic dystrophy, has an unclear pathology and an unpredictable course (Van Eijs et al., 2010). It was first described in the literature over 100 years ago. The term CRPS was agreed upon in 1993 at a gathering of the International Association for the Study of Pain. The estimated incidence of CRPS varies between 5.46 and 26.2 per 100.000 persons with women affected three-to-four times more than men (Van Eijs et al., 2010). The mean age is between 47 and 52 years. There are at least 50.000 new cases annually in the United States with about 1.5-3 million people overall affected with CRPS (Bruehl, 2010).

Dr. Robert Schwartzman, a physician who has researched and treated CRPS for over 30 years, characterizes CRPS as a neuropathic pain disorder (Schwartzman, 2012). It is a chronic pain condition that can have a debilitating effect on a person's life. In addition to the regional pain, many of those with CRPS also experience vasomotor disturbances (Hyatt, 2010). The most common cause is fracture, soft tissue injury, or surgical procedure. In approximately 90% of cases, there is some type of trauma or injury and an abnormal response where the effects of the injury are magnified (National Institute of Neurological Disorders and Stroke, 2013). The initial injury can be minor, and there are a few cases where no precipitating event can be identified (Schwartzman, Erwin, & Alexander, 2009). Some recent studies point to a possible genetic component and immune system role (Sprague & Chang, 2011).

Many clinicians now generally agree that CRPS is a systemic condition that has both central and peripheral neurological components (Schwartzman et al" 2009). There are four subgroups for CRPS based on signs and symptoms that include abnormal pain processing, changes in skin color and temperature, vasomotor abnormalities and edema, and motor dysfunction/ trophic changes. Most persons affected with CRPS report multiple symptoms throughout its course with varying degrees of duration and severity. There is no definitive test for diagnosis so clinical presentation is used (Grieve & McCabe, 2012). There are two specific types of CRPS--type 1 and type 2 (see Table 1). According to clinical diagnostic criteria (Harden et al., 2013), patients need at least one sign in two or more categories and one symptom in three or more categories (see Table 2). The criteria for diagnosis were adopted by the International Association for the Study of Pain in 1994 (Van Eijs et al., 2010). Although some cases of CRPS can be mild, others do not recover and have long-term disability because of the disorder (National Institute of Neurological Disorders and Stroke, 2013). Early diagnosis improves the chance of a better outcome (De Mos, Sturkenboom, & Huygen, 2008).

Examples of signs and symptoms include alterations in temperature, muscle spasms, swelling, increased sweating, skin changes, altered sense of perception, and a feeling of disengagement of the affected limb. The pain associated with CRPS, many times the main symptom, can be constant and severe and can flare up with the least amount of stimulus including light touch. Even if the initial area of injury is small, the pain can spread to the entire limb or the opposite side. The affected limb may feel warmer or cooler, and the skin can exhibit changes such as blotchiness, paleness, shininess, inflammation, and/or unusual colors of blue/ purple/red (National Institute of Neurological Disorders and Stroke, 2013). Stiffness can develop, which leads to problems with muscle coordination. The psychological factors of CRPS cannot be ignored. The fear of extreme pain leads to disuse, which increases immobility. Emotional distress contributes to the release of stress-induced hormones, which sustain the pain. This becomes a vicious cycle (De Mos et al., 2008). There is a high incidence of anxiety and depression, and some patients consider suicide as a way to get relief from the symptoms. To add to the stress, many patients get misdiagnosed, and/or healthcare providers do not understand or empathize with the severity of the condition or the pain associated with it.

In the past, treatment for CRPS has been challenging because of an incomplete understanding of the causative mechanisms and the fact that what works for one patient does not necessarily work for another (Bruehl, 2010; Sprague & Chang, 2011). Recent research has helped to increase knowledge, but more studies are needed to support some of the current treatments such as spinal cord stimulation, aqua therapy, transcutaneous electrical nerve stimulation, sympathetic nerve blocks, and ketamine therapy. Because the main goals of treatment are to manage pain and restore function, physical and occupational therapy plays an important role in the management of CRPS (Hyatt, 2010). However, any range of motion exercises can be agonizing unless there is adequate pain control. Nonpharmacological methods of pain control such as guided imagery, meditation, music therapy, and distraction should be explored (Montana & Kautz, 2011).

Methods

Because there was not a current valid tool that would yield the information that the researchers wanted to obtain, the survey tool and questions were developed by the authors to gather information about CRPS from people who were actually living with the disorder (see Figure 1). A survey expert from the research department reviewed the questions for clarity. Because this was an anonymous survey with no risk to participants, an application for exemption was made to the institutional review board, and exemption certification was granted. The goal was to target those who were diagnosed and living with CRPS so the completed questionnaire was e-mailed electronically through a local CRPS support group and the Reflex Sympathetic Dystrophy Syndrome Association (www.rsds.org). It was stated on the instructions that participation was entirely voluntary and anonymous and that completion of the self-reported questionnaire implied consent. The survey was open for a 30-day period, and during that time, 423 people responded. In addition to quantitative questions about basic demographic data, number of years to diagnosis, and symptoms, there were also questions about patient's feelings and opinions about healthcare providers, which yielded qualitative data.

Results/Analysis/Discussion

On the 423 surveys, some questions did not have 100% response rate because the responders were not required to answer every question. The lowest response rate was for question 7, which was answered in 94% of the surveys. The quantitative data were analyzed using measures of central tendency. The age range of the respondents was 12-74 years. The median age was 44 years. Most of the subjects were women (88%), and 95% listed their ethnic group as White/Caucasian. A large number (153) were diagnosed with CRPS within 1 year of symptoms; however, 21 persons responded that it took longer than 10 years to receive a formal diagnosis. The symptoms described by the respondents are listed in Figure 2. These symptoms are consistent with the ones that are found in the literature that describes CRPS.

Three separate researchers reviewed the qualitative data and searched for common themes. For question 7, 71% of the respondents selected "yes" when asked if they had ever been told the pain was "all in their head." Typed-in comments for this question showed some common responses and emotions. The most frequent comment was "this made me feel like I was crazy or insane." This theme was found in 26% of the "yes" answers for this question. Respondents also used words such as "'insignificant, hopeless, worthless, insulted, vulnerable, alone, frustrated, angry, depressed, and unimportant" to describe how they felt when the severity of the pain was minimized or they were not believed. Sometimes, even their own family members did not always believe their reports of the pain severity. Others stated that they were labeled as "drug seekers" or "drug abusers." It was disheartening to read the responses that described how some even had thoughts of suicide. The number of responses for these common themes is listed in Figure 3.

Questions 9 and 10 asked about suggestions on how healthcare providers could show more compassion and improve care for those living with CRPS. These two questions yielded similar responses. Some of the main themes included listen/show compassion, believe us, take us seriously, don't downplay the level of the pain, know that pain control is imperative, be gentle/ask before touching, and get educated/learn more. Examples of some of the actual written responses are listed in Table 3. One person put it very succinctly stating: "listen, learn, repeat."

Implications for Practice

The results of this study have important implications for practice. Healthcare providers, especially nurses, have an ethical responsibility to treat all patients with respect regardless of their health issues. Patients who have chronic pain can present with challenging issues, but this should never diminish the quality of their care. The frustration of the patients who responded to this study was palpable. Healthcare providers need to believe what these patients are telling them about the pain/symptoms and show empathy to their frustration of living with CRPS. From the results of the survey, one could observe that patients with CRPS can become severely depressed, and healthcare providers must be aware of and address the emotional tolls that come with this condition. This may mean a referral to a mental health professional. Common words used in the survey responses were "listen" and "believe." Listen to what the patient is saying, believe what the patient is saying, and do not minimize the severity of the pain. Showing compassion and understanding can help the provider to develop a better relationship with the patient based on trust. This trusting relationship cannot be built if the patient feels that he or she is not being believed, listened to, or taken seriously. The person needs to know that there are members of the healthcare profession who will be there to support his or her needs.

[FIGURE 2 OMITTED]

[FIGURE 3 OMITTED]

Over and over again, survey respondents commented about education. This theme was mentioned in 121 of the written comments for question 10. Because there are many facets to this disorder, those caring for patients with CRPS must be adequately educated about it. Even a quick Internet search yields quite a bit of information, and providers should take the time to become informed. Education provides additional resources and options for treatment, which gives patients a better chance at relief from pain and other symptoms. Because treatments continue to evolve, healthcare providers need to stay current with CRPS research and facilitate access to care.

In addition to helping improve the care for patients with CRPS, these suggestions can also be applied to other patients with chronic pain or life-altering conditions. Studies have shown that healthcare providers are not always comfortable managing patients with chronic pain (Upshur, Bacigalupe, & Luckmann, 2010). The authors believe that every patient deserves to be treated with compassion, respect, and empathy. Healthcare providers should strive to make changes to their practice so that no patient has to express the frustrations of the respondents in this survey. Although conditions cannot always be cured, they can be managed if the people enduring them can be well supported, both physically and emotionally. Although it takes extra time, those in a position to care for and interact with these patients must do everything in their power to help improve quality of life.

Limitations of the Study

This study has several limitations. First, the data were self-reported, and there was not any way to verily if all participants who participated had actually been diagnosed with CRPS. The sample size was small as compared with the number of people who are living with this disorder. More research is needed on this topic, and for future studies, the use of additional valid tools to assess symptoms (e.g., the Neuropathic Pain Scale) would strengthen the results.

Conclusion

CRPS can be devastating to patients and interfere with their quality of life. The pain is unimaginable to some so they do not believe the patients when they describe the severity of the pain and other symptoms. The survey results in this study suggest that many people who have CRPS have had negative experiences with those in the healthcare profession. The providers who have the opportunity to care for these patients have a responsibility to be informed about the condition and to always treat the person as they themselves would like to be treated. By taking a little extra time to listen and empathize with the patient, healthcare professionals have the potential to help those living with CRPS cope with the condition and take back some control over their lives.

Acknowledgments

We thank the CRPS community for their participation in our survey, and we encourage nurses to visit www.rsds.org for additional information on improving the care of patients with this diagnosis.

References

Bruehl, S. (2010). An update of the pathophysiology of complex regional pain syndrome. Anesthesiology, 113, 713-725.

De Mos, M., Sturkenboom, M. C., & Huygen, F. J. (2008). Current understandings on complex regional pain syndrome. Pain Practice, 9(2), 86-99.

Grieve, S., & McCabe, C. (2012). CRPS: Diagnosis, management, and the nurse's role. Nurse Prescribing, 10(9), 439-445.

Harden, R. N., Burton, A. W., Perez, R. S., Richardson, K., Swan, M., Barthel, J., ... Bruehl, S. (2013). Complex regional pain syndrome: Practical diagnostic and treatment guidelines (4th ed.). Pain Medicine. Retrieved from http://www.rsds.org/clinical-guidelines/

Hyatt, K. A. (2010). Overview of complex regional pain syndrome and recent management using spinal cord stimulation. AANA Journal, 78(3), 208-212.

Montana, C., & Kautz, D. D. (2011). Turning the nightmare of complex regional pain syndrome into a time of healing, renewal, and hope. MedSurg Nursing, 20(3), 139-142.

National Institute of Neurological Disorders and Stroke. (2013). Complex regional pain syndrome fact sheet [Brochure], Bethesda, MD: Author.

Schwartzman, R. J. (2012). Systemic complications of complex regional pain syndrome. Neuroscience and Medicine, 3, 225-242. doi:10.4236/nm.2012.33027

Schwartzman, R. J., Erwin, K. L., & Alexander, G. M. (2009). The natural history of complex regional pain syndrome. Clinical Journal of Pain, 25, 273-280.

Sprague, M, & Chang, J. C. (2011). Integrative approach focusing on acupuncture in the treatment of chronic complex regional pain syndrome. Journal of Alternative and Complementary Medicine, 17(1), 67-70. doi:10.1089/acm.2010.0088

Upshur, C. C, Bacigalupe, G., & Luckmann, R. (2010). "They don't want anything to do with you": Patient views of primary care management of chronic pain. Pain Medicine, 11, 1791-1798.

Van Eijs, F., Stanton-Hicks, M., Van Zundert, J., Faber, C. G., Lubenow, T. R., Mekhail, N., & Huygen, F. (2010). Complex regional pain syndrome. Pain Practice, 7/(1), 70-87.

Questions or comments about this article may be directed to Melissa A. Schneider, RN-BC DNP ONC CNRN, at mschneider@ weiispan.org. She is a Clinical Nurse Educator, Ortho/Neuro/Trauma Unit, York Hospital, York, PA.

Carolyn E. Smith, RN MSN, is a Staff Nurse, Ortho/Neuro/Trauma Unit, York Hospital, York, PA.

Michelle A. Pomidor, RN CRNP, is a Neurosurgical Nurse Practitioner, Ortho/Neuro/Trauma Unit, York Hospital, York, PA.

The authors declare no conflicts of interest.

DOI: 10.1097/JNN.0000000000000140
TABLE 1. Comparison of Two Types of Complex Regional Pain Syndrome

Complex Regional
Pain Syndrome               Type 1                     Type 2
(CRPS;
Hyatt, 2010)

Nerve damage       No evidence or absence     Major nerve damage
                   of nerve damage            occurred with evidence
                                              of numbness and weakness

Incidence          More common: 5.5 new       Less common: 0.8 new
                   cases per 100,000 people   cases per 100,000 people
                   per year                   per year

Prevalence         21 cases per 100,000       4 cases per 100,000
                   people                     people

Triggers           Triggered by tissue        A high-velocity impact
                   injury without nerve       occurs at the tissue
                   injury                     site that is associated
                                              with nerve injury

Other names for    Previously called reflex   Previously called
CRPS               sympathetic dystrophy      causalgia
                   syndrome

TABLE 2. Clinical Diagnostic Criteria for Complex Regional Pain
Syndrome

CRPS Clinical Diagnostic Criteria (Harden et al., 2013)

Continuing pain, not proportionate to any specific cause and no other
  explanation for signs and symptoms

At least one symptom reported in three of the four categories:
Sensory (allodynia and/or hyperesthesia)
Vasomotor (temperature asymmetry and/or skin color changes)
Sudomotor/edema (sweating changes/asymmetry and/or edema)
Motor/trophic (decreased ROM and/or motor dysfunction and/or trophic
  changes in skin, hair, nails)

Evidence of one observed sign in two or more categories:
Sensory (allodynia to light touch, deep somatic pressure and/or joint
  movement and/or hyperalgesia to pinprick)
Vasomotor (temperature asymmetry and/or skin color changes/asymmetry)
Sudomotor/edema (sweating changes/asymmetry and/or edema)
Motor/trophic (decreased ROM and/or motor dysfunction such as
  weakness, tremor, and dystonia and/or trophic changes in skin, hair,
  and nails)

Note. CRPS = complex regional pain syndrome; ROM = range of motion.

TABLE 3. Actual Responses From Survey
Questions 9 and 10

"Always remember that there Is a person involved."

"Please believe us--we know our bodies."

"There is a reason it is called CRPS--it is complex."

"Understand that this affects every part of our lives."

"Don't judge, just listen."

"Please be gentle and ask before grabbing."

"Believe me when I say it hurts."

"Know that CRPS is unbelievably painful and isolating."

"Read up and learn all you can about this disease."

"Education is the key to everything."

FIGURE 1 Complex Regional Pain Syndrome Survey

1. Are you MALE FEMALE?

2. Age in years?--

3. Ethnic Group? White/Caucasian-- Black/African American--
Hispanic/Latino-- Asian/Pacific Islander--
Native American Indian-- Other--

4. Year you were diagnosed with CRPS?

5. How many years did you have symptoms before your 'official'
diagnosis?

6. Briefly describe your CRPS symptoms (Select all that apply).

Pain--
Temperature changes--
Disconnected feeling--
Muscle spasms/tremors--
Skin dryness--
Weakness--
Swelling--
Inability to move extremity--
Skin color changes--
Sweating--

Other (please describe or give more clarification to any of the above)

7. Did someone ever tell you that the pain was 'all in your head' or
minimize your pain?

Yes--

No--

If yes, how did this make you feel?

8. How many different health care providers did you see before you
were diagnosed?

9. What advice or suggestions would you make to your doctors and
nurses about the best way for them to show more compassion when
caring for you as related to your CRPS?

10. From your own experience, is there anything else that doctors and
nurses can do to improve care for those diagnosed with CPRS?
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Author:Schneider, Melissa A.; Smith, Carolyn E.; Pomidor, Michelle A.
Publication:Journal of Neuroscience Nursing
Article Type:Survey
Date:Aug 1, 2015
Words:3313
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