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Exploring the Social Impacts of Trigeminal Neuralgia

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Note: this research originally appeared in the Spring 2017 issue of the Quarterly.

Abstract

Trigeminal Neuralgia (TN), which is a neuropathic chronic pain condition that affects the trigeminal nerve in a patient’s face, is known as one of the most painful conditions in the medical world. The potential social impacts of TN are considered using a qualitative and quantitative research approach. Using a review of studies on analogous chronic pain conditions, a questionnaire was developed to explore how TN may impact a patient’s social interactions, relationships, ability to attend social events, and role within his or her community. The questionnaire was distributed by the Facial Pain Association, one of the world’s largest support groups for neuropathic facial pain, to patients on their email list that have been diagnosed with Trigeminal Neuralgia. The data obtained from the questionnaire was analyzed for any common trends or answers in the information. From here, specific conclusions were drawn in each of the social themes being explored, and it became evident that TN has a profound impact on a patient’s social life.

Introduction

Trigeminal Neuralgia (TN) is a neuropathic chronic pain condition. Neuropathic pain, which is usually accompanied by tissue injury, results from damaged nerve fibers that send incorrect signals in the body (ACPA, 2016). In this case, TN is caused by harm to the trigeminal nerve. The trigeminal nerve sends branches throughout the face to the forehead, cheek, and lower jaw (AANS, 2012). This widespread distribution of nerve branches shows how impactful the trigeminal nerve is in sending sensory information throughout the face. Therefore, any irritation to the trigeminal nerve may result in extensive pain. As a result, doctors commonly refer to TN as “the most excruciating pain known to humanity” (AANS, 2012).

There are two subdivisions of TN, including TN type 1 (TN1) and TN Type 2 (TN2) (NORD, 2014). The National Organization for Rare Disorders (NORD) describes the differences between TN1 and TN2, which includes differences in the types of pain associated with the condition. TN1, according to the NORD, is “characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and/or other areas on one side of the face” (NORD, 2014). TN2, on the other hand, is a constant dull or aching pain that is usually less intense (NORD, 2014).

Currently, majority of the studies on TN include those that assess the various surgical operations and treatments for the condition. In 2015, an international and peer-reviewed journal of therapeutics and clinical risk management published a study from Montano et al. (2015) that explored advancements in the treatment of TN. The study reported that there are new therapeutic drugs and surgical procedures that are promising to the TN community. For example, after analyzing a recent overview of current medical therapies, they concluded that “gabapentin combined with regular ropivacaine injections into trigger sites improved pain control and quality of life, and pregabalin was found to be effective at 1 year follow-up in TN patients” (Montano et al., 2015). Furthermore, regarding surgical procedures, two new kinds of neuromodulation might show promise. Studies have reported “75%-100% of patients achieving good pain relief”; however, further studies need to be conducted due to the few cases treated with this option (Montano et al., 2015).

Although some current treatment options show signs of hope, the results from the study “are not completely satisfying” (Montano et al., 2015). Many patients become drug resistant, and need surgery to treat their case of Trigeminal Neuralgia; in spite of that, pain reoccurrence is very common after one or more surgical procedures (Montano et al., 2015). The results from this meta-data analysis are significant as they show the inconsistency and faulty treatments of TN. Despite the fact that there are many treatments for TN, the reliability of them remains in question.

However, while there is information from current studies to understand the vulnerability of the TN community, very little research has been done to pinpoint how these individuals are personally affected by their condition. Yet personal accounts from people with TN show the potential for the condition to be completely life altering. Pat Akerberg, a member of the TNA Facial Pain Association, described in an account that her relationships and social skills have been affected by her condition (Akerberg, 2015). Furthermore, the Trigeminal Neuralgia Association of the UK, which provides information and support for the condition, posted a personal account from a man named Tom Pritchard. After describing the struggles that he and his family had faced from his TN, he stated, “I just wonder how much has been researched and written about the social side of TN and this is where I reflect upon my own experience” (TNA UK, 2014).

From the personal accounts and current studies that display the severity of TN, it can be determined that there is possibly a relationship between the condition and one’s social life. Understanding the impact that TN may impose on a person’s social life would provide useful information that would help to determine how greatly the condition affects the TN community, possibly raising awareness for it. A questionnaire will be used in this experiment to answer the question: To what extent does being diagnosed with Trigeminal Neuralgia socially impact a patient’s life? A social impact, in this context, is defined as “the effect of an activity on the social fabric of the community and well-being of the individuals and families” (Social Impact, n.d.). Due to the intense pain and personal accounts from TN, the hypothesis for this experiment is that the condition will greatly affect every social aspect that the questionnaire covers.

Literature Review of Relevant Chronic Pain Studies

In order to organize the study on the social impacts of Trigeminal Neuralgia (TN), studies of analogous chronic pain conditions were carefully assessed. These studies of chronic pain were explored not only because of the absence of studies on the social side of TN, but also because they are comparable to the condition. They helped to form the questionnaire for the study on TN as they provided multiple perspectives on the social impacts of chronic pain.

Snelling (1994) completed a study on the effect of chronic pain on the family unit. There were 18 chronic pain members that were used in this study, and data was collected through interviews in their homes. The study concluded that “chronic pain caused social isolation, role tension, marital conflict, reduced sexual activity and feelings of anger, anxiety, resentment and despondency in other family members” (Snelling, 1994). The results from this study helped to show the impact of chronic pain on an individual’s relationships. Given this perspective, it is apparent that the presence of chronic pain can affect one’s relationships with others, which is why it will be implemented into the study on TN.

Furthermore, Gustroff et al. (2008) completed a study to determine how chronic neuropathic pain can impact a person’s quality of life. A representative study was carried out to conduct the research. The results showed that “strong or predominant restriction of daily activities was reported in 65%, strong or predominant sleep disturbances in 60%, feelings of depression in 34% and anxiety in 25%” (Gustorff et al., 2008). The data collected from the study demonstrates that chronic neuropathic pain may affect one’s ability to participate in daily social activities. The Integrative Pain Center of Arizona, who has been awarded the Center of Excellence by the American Pain Society, explained the long-term effects of untreated chronic pain. They stated that, “Eventually, many people with chronic pain develop depression-like symptoms: lack of interpersonal interaction, difficulty concentrating on simple tasks, and the desire to simplify their life as much as possible, which often manifests as seeking isolation and quiet” (IPCAZ, 2014). This viewpoint is significant as it states that chronic pain may affect one’s interactions, which may impact their social activity.

Additionally, Breivik, Collet, Ventafridda, Cohen, and Gallacher (2006) published a study of chronic pain in Europe. This study was conducted to examine the prevalence, impact on daily life, and treatment of chronic pain in Europe. It was concluded that chronic pain seriously affected people socially, notably in their working lives (Breivik et al., 2006). This perspective suggests that chronic pain may impact a person’s role within their community due to the conclusion that their working lives were affected. This is another social impact that may result from chronic pain, which provides another perspective to the study on TN.

Multiple perspectives of the social impacts of chronic pain were drawn from the studies explored in the literature review. These perspectives, which include how chronic pain affects social relationships, interactions, activities, and working lives, all helped to provide the framework for the study on TN.

Methods

The method used in this study is a form of descriptive research, which is used to describe the characteristics of a specific group or population. To go about this research, a questionnaire was used to gather information regarding the social impacts of Trigeminal Neuralgia (TN). The questionnaire includes quantitative and qualitative aspects to better analyze the social implications of TN.

Questionnaire

The questionnaire used in this study was developed using Survey Monkey, an online tool that is used to distribute web-based surveys.

Quantitative portion of the questionnaire

Most of the questionnaire includes questions that yield statistical data to ensure that the data is specific and reliable. The questions were constructed after analyzing analogous studies on chronic pain. Each of these studies provided a different perspective as to how chronic pain can affect a victim socially, which added a different aspect to the study on Trigeminal Neuralgia (TN). The four aspects to be assessed in the study of TN, all of which align with the definition of a “social impact” provided in the literature review, include: a) a patient’s interactions, b) relationships, c) ability to attend social events, d) and role within the community. Furthermore, the analogous studies helped to create the format and structure of the questionnaire. From this, the questions were formatted in a way that asked how strongly the participant agrees with a certain statement, or how able they are to perform in a certain task.

Analysis of the quantitative data

The data from the questions in the quantitative portion of the questionnaire was interpreted by utilizing the tools that Survey Monkey has to offer. Survey Monkey quickly processes the data from each response and presents it to the researcher by using graphs and percentages. Therefore, there is no need to examine every response. This is one benefit of using an online survey service, as it is more efficient in interpreting large sums of data.

Mixed-method portion of the questionnaire

The last question of the questionnaire includes a text box which asks the participants to describe if their condition has affected their social lives in a way that had not been covered in the survey. The intention of this question was to gather more comprehensive results, and seek any areas of this topic that may need further research. The data in this section was analyzed using quantitative and qualitative measures.

Analysis using qualitative methods

The data from the final question was analyzed by three individuals in order to avoid any bias or narrow minded perspectives. Each individual analyzed a portion of the responses, and noted any common trends in the data. From this, categories were created to organize the responses and make it easier to interpret the data. The categories included the most common themes in the responses. After a comment was read, the appropriate category or categories were placed on that response. If a new category was created in the middle of the analysis, then the comments that were already analyzed would be re-assessed in order to avoid any faults in the data.

Analysis using quantitative methods

The quantitative data from the comments was analyzed simply for the prevalence of a common theme or response. The categories that were created could be analyzed using Survey Monkey to see what percentage of the comments were made up of a certain theme. In the mixed-method portion of the data analysis, however, quantitative data will be relied on less heavily to ensure that the descriptions in the comments play a greater role in drawing conclusions.

Ethics

In order to follow the necessary ethical procedures of research on human subjects, the project was approved by an Institutional Review Board (IRB). The risks of participation were included on a consent form on the first page of the questionnaire. The participant must have agreed to the consent form in order to continue on with the survey. If not, they were immediately disqualified in order to avoid any complications. Moreover, the questionnaire did not ask for any personal information so that any issues of confidentiality would be avoided.

Distribution of the Questionnaire

In order to ensure that the questionnaire would reach a large enough sample size, the Facial Pain Association, one of the world’s largest support groups for neuropathic facial pain and Trigeminal Neuralgia, was contacted to distribute the survey. The Chief Executive Officer of the Facial Pain Association, John Koff, agreed to distribute the questionnaire through his email list. Furthermore, the link to the questionnaire was posted on the Facial Pain Association’s Facebook page to expose it to a greater number of people. Both the email and the Facebook post included a summary about the purpose of the research in order to connect with the individuals who saw it. Having the ability to efficiently distribute the questionnaire to a large number of people is another reason why an online survey service was utilized in the study.

Data Analysis

Quantitative Data

Analyses of the quantitative data focus on the results of the first nine questions of the questionnaire, which can be found below the references section. A total of 971 people agreed to the consent form, which was considered the first question of the questionnaire, and advanced to the rest of the questions.

Interactions

The results from a number of questions in the survey indicate that TN greatly affects a patient’s interactions with others. Question two, which evaluates the extent to that TN affects a patient’s ability to perform certain activities (see Table 1), gives insight to the impact that the condition has on a patient’s communication skills. Out of a total of 870 respondents, 74.48% answered that they are less able to communicate with others. Furthermore, approximately 41.76% of respondents agreed and 28.00% of respondents strongly agreed that having TN has made them insecure, affecting their interactions with others (See Appendix E). Question eight, which asked patients if their pain has resulted in a lowered self-esteem, also had a majority of the respondents either agreeing or strongly agreeing with the statement (See Appendix F). While being insecure and having a low self-esteem both relate to having a negative self-perception, it is important to not assume that the results from question eight imply that having a low self-esteem may affect one’s interactions. However, while the question isn’t specific to a particular aspect of one’s social life (e.g. interactions, social activities, relationships, etc.), it should be noted that having a low self-esteem may affect each patient socially in their own way, or not at all.

Relationships

It can be determined from the results of the questionnaire that TN has a considerable impact on a patient’s family. Approximately 88.34% of respondents either agreed or strongly agreed that their family has been affected by their struggles with Trigeminal Neuralgia (See Appendix D). Moreover, 68.89% of people stated that they are less able to maintain relationships with friends and family (See Table 1). However, the results seemed to differ when the word “family” was not incorporated into the question. When asked if they have lost important relationships as a result of their pain, the data was spread almost evenly across the answer choices. Approximately 45.53% either agreed or strongly agreed, 15.06% were neutral, and 39.42% either disagreed or strongly disagreed.

Social Events and Activities

It is evident that an overwhelming number of participants used to attend more social activities before they developed TN. Approximately 79.41% of the 850 people who responded to the fifth question of the survey either agreed or strongly agreed that they used to do so (See Appendix C). Moreover, more than half of the people who responded to the third question either agreed or strongly agreed that their pain has constrained them to their household (See Appendix A). Also, according to Table 1, 72.48% are less able to attend social activities, and 14.79% are no longer able to.

Role in the Community

The questions that will be covered in this section cover how TN has affected a patient’s occupation and ability to support his or her community. The results suggest that TN seriously affects a person’s occupation and ability to work. Approximately 76.20% of people answered that they are less able or no longer able to work outside of their home (See Table 1). Additionally, nearly 70.00% of participants either agreed or strongly agreed that TN has limited their occupational choices (See Appendix G). TN also impacts a patient’s ability to support his or her community, with a little over 80% of respondents saying that they are less able or no longer able to support their community with, for example, community service.

Mixed-Method Analysis

The data that will be analyzed through qualitative and quantitative measures comes from the last question on the questionnaire. The last question, which allows the participant to make his or her own comment, is as follows: “If you feel that your condition has affected you socially (e.g. communication skills, relationships with others, role within your community, etc.) in a way that has not been covered in this questionnaire, please describe it below.” Although the question attempted to cover themes that were not addressed in the first part of the questionnaire, the data that is presented here stems from the most prevalent trends in the comments to ensure that the data is being presented to its fullest extent. Therefore, some themes from the first section of the questionnaire may overlap into the data analysis of the comments.

In total, the last question received 385 responses. One common trend that was noticed in 23.38% of the total responses was that TN has a significant effect on one’s ability to participate in daily social activities. Many individuals noted that they are unable to regularly attend social activities due to the unpredictability of their episodes with pain. One individual stated that, “Since TN & it’s affects [sic] are unpredictable, you are no longer able to make reasonable predictions about normal day to day activities.” Furthermore, a number of patients noted that they were afraid to attend activities because of their pain.

A patient’s interactions were another common theme shown throughout the responses, with approximately 20.52% having to do with this topic. Many individuals stated that their pain made it unable for them to speak, preventing them from interacting with others. Moreover, it is apparent that a common misunderstanding for the disease tends to frustrate those with the condition, affecting their interactions with other people. One individual stated that, “There is no recognition of the disease – therefore no understanding. It is not “just a headache”- this frustrates me, and in turn, I am aggravated at the lack of compassion.”

Another emerging theme in the comments was the social impact of a patient’s medications. Some of the side effects that were that the medications have an impact on a patient’s ability to communicate, interpret information, and travel to events outside of their home. Although there are many side effects that come along with the medications, people tend to rely on them too much to give them up. One individual noted that, “I live life by my medications schedule. Movie, concert, church, funeral, class, wedding, sleep, any aspect of my social life has to be thought forward on when am I due to take my next round of meds.” However, some responses about medications were positive, stating that they have provided relief to the individual and opened them up to be able to participate in more activities.

Relationships were also noticed to be a theme that was consistent throughout the comments, with 15.32% of them explaining the impact that TN has on their families, and 6.23% on their friends. Many individuals feel sadness for the pain that they’ve caused their family, the years or memories that they have missed out on, and the impact that TN has had on their familial relationships. One victim of TN said that “I’ve felt sadness and guilt from the hardship it has caused my family. Just too many years of losses, emotions, and disappointments; all the missed relationships I can never get back with those I love.” To continue, many people stated that their relationships with their friends are diminishing due to their TN. This is primarily due to a lack of understanding about the condition, and also from a patient’s inability to participate in many social activities. Few individuals felt as if their struggles have strengthened their relationships with their family and friends.

While the themes that were discussed were the most prominent in the comments, there were a few more common trends that were apparent enough to be noted as significant data. Throughout the comments, individuals showed or stated signs of depressing feelings. Many of these comments had explained that their negative attitudes led to isolation, sadness, and anxiety. The environment was also noted as a limiting factor, with cold temperatures or breezes causing flare-ups in an individual’s TN. Lastly, a number of people stated that they are either less able or no longer able to maintain their job.

Limitations and Implications

There are limitations of the study to consider when evaluating the results from the questionnaire. To start, the questionnaire did not differentiate between the two subdivisions of Trigeminal Neuralgia as described in the literature review. These two subdivisions, which are categorized by different types or levels of pain, may impose different effects on a patient. Also, a patient’s age was not accounted for in the questionnaire. This may affect the results of the study since a person’s age may influence his or her answers to some of the questions. For example, a senior citizen who is retired may not be affected by the questions pertaining to work.

To continue, although the sample size that was generated from the Facial Pain Association provided such a great number of responses that added to the validity of the quantitative portion of the study, it hindered the efficiency and accuracy of the qualitative portion of the questionnaire. With 385 comments in total, the comments section was filled with a variety of themes and trends. Embedded within each theme was a variety of ideas, each specific to one person or small group of individuals. Such a great number of thoughts and concepts made it nearly impossible to summarize all of them in the data analysis. Therefore, the most glaring themes and ideas were presented to make sense of the comments.

Lastly, some of the questions of the questionnaire were too broad, and need to be more specific. For example, the third question asks the participants how strongly they agree or disagree with the statement: “My pain has constrained me to my household”. The broadness of this statement fails to categorize the question, making it unknown whether this affects a patient’s interactions, ability to attend social activities, etc.

While there are limitations to the study, the questionnaire yielded enough information to indicate the extent that TN affects a patient socially. As a result, specific conclusions can be drawn in the social themes that were assessed in the questionnaire. Also, the comments from the questionnaire shed light on different ideas or categories that may impact a TN patient socially. The presence of these new themes paves the direction for further research on this topic.

Conclusion and Future Directions

This study addressed the social impacts of Trigeminal Neuralgia, which explored the affect that the condition has on a patient’s interactions, relationships, ability to attend social events, role within his or her community, and any other glaring themes that were present in the responses to the questionnaire. The data from the questionnaire proves that TN has a profound impact on a patient’s social abilities. This aligns with the hypothesis that was constructed before the data was collected, which assumed that TN would greatly affect the social themes being explored in the study. Due to the statistics from the questionnaire, as well as the comments that add more depth to the effects of TN, conclusions can be drawn to understand the extent that TN impacts a patient socially.

Interactions

The results described in the data analysis suggest that TN has an overall negative impact on a patient’s interactions. Many individuals commented that their pain from TN has made it hard for them to speak, affecting their interactions with others. The quantitative portion of the questionnaire yielded more concrete and significant results, however. 74.48% of respondents stated that they are less able to communicate with others, and 69.76% of people either agreed or strongly agreed that their insecurities from TN affected their interactions with others. This data is pulled from such a large sample size that the information is accurate enough to infer that TN has a serious affect on a patient’s interactions.

Relationships

Both the quantitative and qualitative data from the questionnaire proposes that TN has a significant impact on a patient’s relationships. Many people commented that their pain has kept them from maintaining relationships with their closest friends. Due to the unpredictability of their pain, people with TN are less able to attend social events and meet with their friends, damaging their relationships. However, the results from the questionnaire suggest a more prominent impact on a patient’s relationships with his or her family. Almost 90.00% of the 849 people who responded to the sixth question of the questionnaire either agreed or strongly agreed that their family has been affected by their struggles with TN. This differs from the results of the fourth question, which does not specify familial relationships. Instead, this question asks if the patient has lost important relationships from their pain, and the results are distributed more evenly across the answer choices. Furthermore, a majority of the comments that discuss a patient’s relationships involve statements about family. For these reasons, it can be concluded that TN has a profound impact on a patient’s relationships, especially with their family.

Social Events

According to the results, a person with TN is much less able to attend social events. The quantitative data suggests that most people, approximately 72.48% of them, are less able to attend social activities with their condition. The comments suggested that people with TN are unable to determine when their pain will flare-up, which limits their ability to make plans or attend social events. This has them constrained to their households, which more than half of the responses to the third question agreed to.

Role in the Community

The results from the questionnaire go on to show a decrease in a patient’s role within his or her community. A number of people commented that they are less able to attend work due to their pain. More significantly, data from the quantitative portion supports this conclusion as 76.20% of responses said that they are either less able or no longer able to work outside of their home, and 45.04% of people strongly agreed that TN has limited their occupational choices. Moreover, patients with TN are less able to support their community with, for example, community service, as a little over 80.00% answered that they are either less able or no longer able to do so.

Other Common Trends

Data from the last question, which gave participants the prerogative to comment his or her own thoughts, sheds light on other themes that may impact a TN patient socially. One theme that was commonly discussed throughout the comments was medications. Patients described that the side effects of their medications limited their abilities to go out and interact with others, greatly affecting their social side. Furthermore, the environment and depression were two other restricting themes that patients described. It can be concluded that these themes may impact a TN patient socially, but further studies need to be conducted to verify these results more specifically.

Future Directions

The results and limitations of the study go on to provide further direction to research on this topic. The common themes in the comments of the questionnaire that were not accounted for in the quantitative portion of the questionnaire should be explored further in a different study. The most prominent of these themes include medications, depression, and the environment. Furthermore, another direction for future research would be to examine the differences of the effects of TN1 and TN2, as well as age, on a patient’s social life. It would be advised to use merely quantitative methods for these studies unless a few interviews or verbal responses are recorded. If these studies were to be conducted, the extent that TN affects a patient socially would be better understood.

Tables and Appendices

Table 1

The Effect of Trigeminal Neuralgia on Social Activities

Note. The data in this table is from the second question: “How has your condition (Trigeminal Neuralgia) affected your ability to perform the following activities?”

Appendix A

The Impact that TN has on a Patient’s Ability to Leave Their Household

Appendix B

The Impact that TN has on a Patient’s Important Relationships

Appendix C

The Impact that TN has on a Patient’s Ability to Attend Social Activities

Appendix D

The Impact that TN has on a Patient’s Family

Appendix E

The Impact that TN has on a Patient’s Interactions

Appendix F

The Impact that TN has on a Patient’s Self-Esteem

Appendix G

The Impact that TN has on a Patient’s Occupational Choices

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