Health professionals caring for people living with HIV will encounter myriad symptoms ranging from minor and bothersome problems to problems that are associated with great distress. In caring for a patient who presents with a symptom, the health professional has two main roles. The first involves defining the etiology of the symptom and implementing an appropriate treatment strategy directed towards eliminating or modulating the pathophysiologic process responsible for triggering the symptom. The second role involves ensuring that a strategy is developed and implemented that provides timely and effective relief of the distress associated with the symptom. Usually, these two goals involve two closely interrelated, but different, treatment strategies and there may be times, especially towards the end of life, when the first goal is unattainable. At the core of the process required to achieve these goals is symptom assessment, the focus of this chapter.

To understand symptom assessment in HIV infection, health care providers must understand symptoms within the contexts of quality of life and of HIV infection itself. This chapter addresses the symptoms common in patients with advanced HIV disease, the principles of symptom assessment, and an approach to symptom assessment in advanced HIV including some clinically useful assessment instruments. Although this chapter frequently uses fatigue, pain, and the symptoms associated with fever as examples to illustrate the process of assessment, the same general process of assessment applies for all symptoms.

The overarching goal of palliative care is to relieve or reduce suffering and promote quality of life. A crucial component of quality of life is the component that relates to symptoms including fatigue and pain, among many others. Such symptoms can be present throughout the course of illness from diagnosis through the progression of disease and toward the end of life. Of note, these symptoms may be present even at times when disease markers are improving. The sometimes unpredictable and episodic course of HIV-related illness—especially in the early years of this illness when treatment strategies were less clearly outlined—made it difficult to estimate the likely course of HIV-related disease for an individual. This factor, along with patient advocacy and developments in the field of palliative medicine, prompted an increasing awareness of the importance of palliative medicine for those living with HIV infection. These and other factors have served to promote quality of life itself as an important outcome of all treatments for disease, regardless of the stage of illness.

Health-related quality of life is a multidimensional concept affected by a variety of positive and negative experiences from a variety of domains. A patient’s health-related quality of life should not be thought of only as a research outcome; rather, in clinical practice it is a vitally important concept that reflects the global impact of disease and the impact of related medical interventions.

Broadly, quality of life can be assessed in three domains: physical, psychological, and social. Within the physical domain, the patient’s symptoms and physical functioning must be assessed. However, problems that affect a patient’s quality of life extend well beyond his or her physical symptoms into the other domains. Although the focus of this chapter is on the clinical assessment of physical symptoms of people with HIV-related illness, the interplay between the physical, psychological and social domains of quality of life must always be considered within the clinical assessment process. This especially includes the psychological and social problems and experiences that may occur in individual cases.

To set the stage for the process of symptom assessment, it is most helpful for health professionals to have an understanding of the common symptoms experienced by patients with advanced HIV infection and an understanding of quality of life in HIV-related disease. This section of the chapter will summarize some of the studies that have increased our understanding of the common symptoms that occur with HIV infection. Clearly, myriad symptoms can occur in the setting of HIV-related disease. In the palliative care setting, in patients with advanced HIV infection, a wide range of symptoms occurs, with fatigue, anorexia/weight loss, pain, insomnia and depression being the most commonly reported. Although the presence of a symptom may be related to the HIV infection directly, commonly a symptom will reflect an underlying pathologic process that is related to the HIV infection.

Most of the surveys that have sought to characterize symptoms associated with HIV infection and AIDS have focused on specific symptoms.^1-3 However, two broad symptom studies of outpatients with AIDS highlight the spectrum of symptoms experienced by this population.^{4, 5} Fantoni, et al. investigated the prevalence and intensity of symptoms and the use of medications for symptom control among 1128 HIV-infected patients reporting to the outpatient clinics or wards of 15 clinical centers in central Italy, recording clinical and epidemiological data on three consecutive days.⁴ The most prevalent of 10 symptoms were asthenia (65%), anorexia (34%), cough (32%), pain (29%), and fever (29%). Opioid analgesics were used in 3% of these patients and nonopioid analgesics in 13%. Pain was present in less than one third of patients but the report nonetheless suggested that pain was undertreated.

Another survey, undertaken by Vogl, et al., explored the symptoms of 504 ambulatory patients with AIDS to assess symptom prevalence, characteristics, and distress.⁵ In this group, of the 32 symptoms assessed using a validated symptom assessment instrument (the Memorial Symptom Assessment Short-Form),^{6, 7} the mean number of symptoms reported was 16.7 per patient. Twelve of the 32 symptoms had prevalence figures of greater that 60% and these included worrying (86%), fatigue (85%), sadness (82%), pain (76%), feeling irritable (75%), difficulty sleeping (73.8%), feeling nervous (68%), dry mouth (67%), difficulty concentrating (64.5%), shortness of breath (62.4%), feeling drowsy (61.9%), and cough (60.3%). More symptoms were reported in those patients with lower performance scores and in those for whom a history of intravenous drug use was reported as the mode of HIV transmission.

Neither of these studies clearly delineates the strategies used to treat the symptoms. In patients with HIV infection, as is the case in patients with cancer, pain and other symptoms are often undertreated and therefore prevalence figures should not be read as reflecting state of the art palliation for the symptoms associated with this condition. For example, in one study, 226 ambulatory AIDS patients were assessed regarding the type and frequency of analgesic medications prescribed for pain.⁸ Results indicated that nearly 85% of patients with pain were classified as receiving inadequate analgesic therapy and fewer than 8% of the 110 patients who reported “severe” pain were prescribed a “strong” opioid (e.g., morphine), as would usually be suggested in published guidelines for treatment of severe pain.⁸

Thus it is clear that many symptoms are prevalent in persons with HIV-related illness, especially in persons with advanced HIV-related disease. In addition, there is evidence to suggest that the higher the number of symptoms, the greater the experience of distress. It is common for many symptoms to be present concurrently. Finally, the distress from symptoms related to HIV infection is often undertreated. It is within this context that symptom assessment must be undertaken and each of these factors must be taken into consideration within the symptom assessment process.

Several studies have specifically considered quality of life in people with HIV disease.^9-14 The impact of symptoms on quality of life was explored in the large prospective cross-sectional survey done by Vogl, et al. discussed above.⁵ In this survey, symptoms were assessed and characterized using a validated symptom scale and it was demonstrated in this population that both the number of symptoms and the symptom distress were highly associated with psychological distress and poorer quality of life. Older age, female sex, nonwhite race, poor social support, and the presence of intravenous drug use, each have been associated with greater distress and poorer quality of life. In many studies the presence of symptoms is the strongest indicator of poor quality of life.^{5, 10, 12, 15} The results of these studies highlight the impact of a broad range of physical and psychological symptoms on quality of life.

As discussed above, symptom assessment is a most important aspect of patient care and a significant component of quality of life assessment.^16,17 When care is being provided for people with HIV-related illness, nearly all clinician interactions with patients require symptom assessment skills. The following section outlines key points to consider when assessing symptoms.

A symptom has been defined as “a physical or mental phenomena [sic], circumstance or change of condition arising from and accompanying a disorder and constituting evidence for it.... specifically a subjective indicator perceptible to the patient and as opposed to an objective one (cf. sign).”¹⁸ In other words, symptoms are experienced by the patient and signs are observed by the clinician. This is a vital concept; symptoms cannot be seen, although sometimes the physical manifestations of a symptom can be detected. Oftentimes a clinician can also observe the distress associated with a symptom.

Just as signs are not symptoms, symptoms and signs are not, of themselves, diagnoses. Symptoms and signs can however assist in the diagnostic process. For example, fatigue is a subjective sensation–a symptom–that may occur with the diagnosis of anemia or infection, but fatigue itself is not a diagnosis. A fatigued patient may present with no signs or with cachexia and/or other clinical findings. A diagnosis in a patient with fatigue would be related to the cause of the fatigue. For example, the diagnosis may be an underlying infection such as cytomegalovirus (CMV) infection (see Table 3-1).

As an another example, a patient may report a “flushing,” “sweats,” a “feeling of being hot,” or a “feeling of being chilled.” In this context, each of these is a symptom. A sign (which may or may not be present) might in this instance be a fever, and the diagnosis may be an infection or another problem (see Table 3-2).

It is important to be aware that the clinical signs cannot give an indicator of the degree to which a patient is distressed or bothered by a symptom – that must be defined by the patient’s selfreport. Pain is another subjective sensation (symptom) that may, or may not, be associated with signs. Although sometimes distress can be seen – as, for example, an anguished appearance, crying, writhing, tachycardia, or other physical manifestations – none of these signs can truly give the clinician a full indicator of the degree to which a patient is distressed or bothered by the pain. That must be defined by the patient’s self-report.

In the case of chronic pain, it is not uncommon for a patient to demonstrate little in the way of physical manifestations of distress even when he or she reports that the pain is severe. A patient may have no visible signs of distress but may report that the pain is 10/10 (on a scale of zero to 10). Even in the absence of signs of distress, the pain must be assessed, the etiology of the pain considered, and the associated distress concurrently treated. (See Chapter 4: Pain.)

By keeping these distinctions in mind, health professionals can more easily keep a focus on the two broad goals of symptom assessment: the goal that is related to the treatment of pathophysiology, and the goal that is related to the treatment of distress.

If distress is to be assessed and treated effectively, health care professionals must understand the words that patients use to describe symptoms and, optimally, must use a common language for describing symptoms to others in the health care team. In a particular clinical setting, patients and the health care team usually speak the same “native tongue.” Nonetheless, even in such a setting, clear language is not always used when communicating the detail of symptoms.

The problems with this failure of language in the field of symptom assessment are twofold. One, words that people use to describe symptoms may mean different things to different patients. Two, the words used to describe a symptom may have various medical implications.

Some of the words used to describe each symptom have a plethora of meanings for patients. This problem of itself can only be approached by careful historytaking and questioning by the clinician to elucidate the nuances of the language the patient uses to communicate distress. Patients should not be described as poor historians. Clinicians must endeavor to be good historians, or good historytakers.

The words patients use to describe their symptoms can often have more than one meaning, which highlights the crucial need for detailed and thorough historytaking. For example:

• Fatigue may mean to some sleepiness, to others exhaustion, to others muscle weakness, and to still others the word may have other implications.
• Shivering implies to most a tremulous shaking that occurs with fever or sepsis. However, patients have also used this word when attempting to describe the dysesthetic sensation that may occur with neuropathic pain.
• Confusion may be used to imply disorganized thinking, forgetfulness, hallucinations, concentration deficits and numerous other changes in mental status.

Within the medical arena, the words used to describe a given symptom may have a wide range of implications. Definitions and taxonomies for many symptoms are lacking. Clinicians are often inexact in describing the experiences of patients to other clinicians. This problem has clinical implications that relate to continuity of care and team communication. In addition, it has research implications related to the processes of developing, undertaking and interpreting symptom-related research studies.

Key words that clinicians may encounter in assessing symptoms of patients with HIV are pain, fatigue, breathlessness, and confusion. Consistency is lacking in the application of these and many other words that are used to describe symptoms. Clinicians need to be more aware of this semantic problem and to develop consistent tools for medical communication. The variability of the meanings of words also highlights the need for clinicians to use validated instruments for symptom assessment and research. In summary, these observations point to the need for health professionals to explore the meaning of the symptom in detail during the process of symptom assessment.

Pain has a generally accepted definition and a taxonomy has been developed for its study.¹⁹ Therefore, clinicians generally can use a language that other clinicians can understand when describing pain (see Chapter 4: Pain). Words such as “lancinating neuropathic pain” can be used to describe a pain syndrome very effectively, in a manner that is widely accepted. The development of this taxonomy has also allowed clinicians to undertake and interpret studies of pain. For example, the results of studies of lancinating neuropathic pain caused by post-herpetic neuralgia can be compared and applied in the clinical setting because the pain about which investigators and clinicians are communicating is clearly defined and understood.

Breathlessness is a word that is generally used to refer to subjective reports of difficulty breathing. However, it also has been used in the clinical and research settings to describe the visible use of the accessory muscles of respiration (which may not always be associated with distress). Some palliative care studies have reported dyspnea as a prevalent symptom toward the very end of life, but have not defined clearly whether the reports are referring to subjective breathlessness experienced by the patient, or observed heavy breathing witnessed by another person.

Breathlessness lacks widely accepted scientific definitions and taxonomy; consequently, studies of dyspnea can sometimes be difficult to compare. It can thus be difficult to apply the findings of such studies.

Fatigue, as noted earlier, is a word that is used to identify a variety of sensations that may include generalized weakness, sleepiness, and others. Unless clinicians clearly define the sensation to which they are referring in clinical discussions, this can be confusing for others on the health care team.

Confusion is a word that is commonly used as a diagnosis by clinicians. It is not. Confusion may be a symptom when described by patients, and when used by clinicians it could also legitimately be described as a sign, usually of an underlying diagnosis/disorder such as delirium, dementia or other condition. Even in the latter context, confusion is a global term. It is most useful when qualified with more detailed descriptors such as concentration deficits, memory deficits, etc., as would be elucidated by an assessment of the confusion with a comprehensive mental state examination.

Symptoms are by definition subjective, and where possible, patient self-report must be the primary source of information. Some observations to consider in relation to this are as follows.

Symptoms are multidimensional experiences that may be evaluated in terms of their specific characteristics and impact.^{6, 25-28} Symptom multidimensionality is portrayed in Table 3-3.^{16, 17} It is not uncommon for researchers or clinicians to describe a symptom simply by stating that it is present. Although prevalence data alone may be useful information, a more detailed assessment of the characteristics of specific symptoms is usually more helpful, especially in the clinical setting.

Significant variability has been demonstrated in relation to symptom characteristics.^{6, 25-28} Three crucial variable dimensions are frequency, severity and distress. Although symptom characteristics are often variable, the proportion of patients who describe a symptom as relatively intense or frequent usually exceeds the proportion describing it as highly distressing.^{28, 29} The frequency dimension does not apply to some symptoms, for example, constipation.

Portenoy, et al. have developed a validated instrument for the assessment of three key dimensions of symptoms: frequency, severity and distress.⁶ (See Figure 3-1 at the end of this chapter.) This instrument mirrors in part what usually should be explored clinically in relation to each symptom. The three questions asked of the patient on that instrument address how frequent, severe and bothersome a symptom may be to the patient. A shorter version of this instrument has been used in studies of patients with advanced HIV infection and has provided useful data.^{5, 7}

Symptom distress relates to the degree of subjective discomfort and the “bothersomeness” of each specific symptom. Global symptom distress has also been considered as a subjective concept that relates to the impact of all symptoms. Symptom distress can be described and measured. As alluded to above, the overall impact of symptom distress is most important. A large prospective cross-sectional survey, discussed above, of 504 ambulatory AIDS patients found that patients experienced many distressing physical and psychological symptoms and a high level of distress.⁵ Symptom distress significantly correlated with lower performance status, worse scores on measures of psychological distress, and a poorer global quality of life.

The impact of symptoms may be described and measured in relation to specific issues or global constructs. Many of the specific issues form the components of the global concept of quality of life. The impact of a symptom can be assessed in relation to the following:

• Spheres of functioning
• Family, social, financial, spiritual and existential issues
• Various global constructs such as overall symptom distress or quality of life

Factors that may modulate symptom distress may in turn be modulated by other components of the overall quality of life. Distress can be compounded when it is coming from multiple sources. By the same token, positive aspects of life frequently can mitigate some degree of distress. The multidimensional construct of quality of life reflects the broad influence of many positive and negative factors on a patient’s perceived well-being.^{30, 31} A diverse array of physical, emotional, social, ethical and spiritual phenomena can increase or temper distress or enhance well-being. Factors from each of these areas have the potential to independently influence quality of life, and to exacerbate or lessen the distress associated with specific symptoms. Each must therefore be considered in symptom assessment.

This section focuses on the practical aspects of symptom assessment, discusses some populations in which symptom assessment can be especially challenging, and reviews available instruments for symptom assessment.

The key to symptom assessment is a comprehensive approach as shown in Table 3-3. The health care provider should undertake the following tasks:

• Develop an understanding of the patient’s current and past illness
• Elicit the details of the distress caused by each symptom
• Define the etiology and pathophysiology of each symptom
• Clarify the nature of the underlying disease
• Develop an understanding of the impact of both the disease process and symptoms on quality of life

The assessment process can be conceptualized in the following steps:

• Evaluation of the patient’s medical history
• Physical examination
• Investigations and further evaluation

These steps should allow for the development of a problem list and a treatment plan. The latter should always include a method for ongoing evaluation of the impact of the treatment plan – a clearly defined plan for ongoing symptom assessment. A discussion of the detail of the many specific treatment plans that exist for each symptom is beyond the scope of this chapter, but these issues are addressed in symptom-specific chapters. (See, e.g., Chapter 4: Pain, Chapter 6: Pulmonary Symptoms, and Chapter 8: Oral Problems.)

The initial step in the assessment of the symptomatic patient involves the clinician eliciting a complete medical history. This process lies at the core of clinical diagnostic medicine. Symptoms must always be considered in context of the overall medical condition.

The order and timing that are chosen by the clinician for eliciting a patient’s medical history will be influenced by a number of factors, including the following:

• The degree of acute patient distress that is present
• Convenience and efficiency
• The previous relationship of the patient and clinician

Clearly if a patient is in a great deal of distress an expedited history may be required while the clinician concurrently treats the patient’s acute distress (for example in the case of a patient in severe acute pain). Although distress that is so severe as to be in need of treatment within minutes requires an expedited approach, this does not obviate the need for eliciting a detailed history from the patient or another source at a slightly later time.

If the clinician is familiar with the patient, the clinician may already be aware of much of the history and the historytaking can be expedited. A clinician seeing a patient for the first time in an emergency setting will likely need to either spend more time with the patient or review available records to ascertain key components of the history.

With complicated HIV-related illness and in cases where multiple symptoms are present, it can helpful to deviate slightly from the traditional approach to historytaking by specifically eliciting the symptom history, separate from the history of HIV infection and the known intercurrent illnesses. This approach can focus the history and help the clinician define both the detail of the medical problems and the detail of the distress. This approach also serves to emphasize the key components of a palliative symptom assessment and, although it does depart slightly from the traditional approach to historytaking, it does include all of the components of a traditional history.

The traditional approach to historytaking includes the following activities:

• History of the present illness
• Systems review
• Past history
• Family history
• Social history
• Medication history

Another approach ensures emphasis on all aspects of the detail needed to care for patients with advanced illness and multiple symptoms (but still involves all of the same components as the traditional approach). This approach includes the following topics (underlined topics are those not always covered in a traditional history):

• History of the underlying illness (HIV infection) including the presence and chronology of known related illnesses (other HIV-related diagnoses) and/or medical events
• Symptom assessment, which allows for a specific focus on new and current symptoms
• Systems review
• Past history of other medical, surgical or psychiatric problems
• Medication history
• Family history
• Social history
• A review of current goals of care

A history of the underlying illness (HIV infection) and its consequences is essential. This will provide insight into the patient’s experience, the likely diagnoses that might be the etiology of each symptom, and the therapeutic options that could be considered to relieve the symptoms. Therefore, in the assessment of patients with HIV infection the components of the history should include:

• Stage of the HIV infection
• Presence and chronology of HIV infection and known HIV-related, illnesses and/or medical events (mode of transmission of HIV infection ascertained if possible)
• History of therapies directed towards HIV infection
• History of therapies directed towards significant HIV-related illnesses and/or medical events

A symptom evaluation that allows for a specific focus on, and assessment of, new and current symptoms is vital. Often many symptoms are present; each symptom may have several dimensions and each may affect the patient’s distress and quality of life to a different degree. In a comprehensive symptom assessment, an attempt should be made to single out each symptom and to explore its dimensions and impact separately. When a patient presents with multiple symptoms it can also be helpful to ascertain his or her biggest issues: the most bothersome dayto-day problems.

• Chronology of the Symptom(s)

  Establish the chronology of each symptom. (e.g., When did it begin? Were there any triggering factors? Was it initially severe, did it escalate over time or did it become severe suddenly? Does it vary over time?)

• Exacerbating and Relieving Factors

  Establish factors associated with the symptom. (e.g., Do activity, movement, heat, cold, or other factors affect the symptom?)

• Symptom Characteristics

  Ask the patient to describe symptom characteristics, including site (for pain and some other symptoms); frequency; severity; and associated distress or how bothersome the symptom may be for the patient.⁶ It is important to ensure that, where possible, reports of symptoms, especially of associated distress, are based on the subjective experience of the patient. Occasionally a patient may have a degree of cognitive impairment and may not be able to provide such detail. In these instances rely upon clinical signs of observed distress, as discussed under the section Challenging Clinical Situations and Special Populations.

• Quantification of the Symptom(s)

  If possible, ask the patient to quantify the symptom in some way to provide an “anchor” for ongoing evaluation. Pain and fatigue, for example, can be described on a severity scale of 0 to 10, and similar scales can be used for other symptoms. Words can also be helpful, such as “mild,” “moderate,” or “severe.” See Figure 3-2, the Memorial Pain Assessment Card, at the end of this chapter;³² see section Symptom Measurement in Clinical Practice.

• Impact on Functional Capabilities

  Elicit the impact of each symptom on functional capabilities. (e.g., How does the fatigue limit you in daily activities?) Question 23 in the Brief Pain Inventory, Figure 3-3, provides a useful template for such questions.³³

• Impact on Other Symptoms

  Explore the degree to which each symptom, or its treatment, induces or exacerbates other physical or psychological symptoms (e.g., Does the fatigue become more severe on the days that you also have high fevers? Do the medicines seem to cause sleepiness or confusion? Do you find that the pain gets you down?)

• Impact of Specific Therapies on Each Symptom

  Clarify the impact of therapies on each symptom. Especially with palliative interventions, it is crucial in the process of symptom assessment to investigate the impact of specific therapies on each symptom to ascertain the efficacy of these therapies. Detailed questioning may be needed to clarify which medications or treatments a patient has tried and how well they relieved the symptom. (For example, with the symptom of pain, did pain medications provide you with any relief, and if yes, how much relief? For this question, a pain scale can help the patient to report on a scale of 0 to 10 his or her pain level before the medication and pain level after the medication.)

  It is also important to ascertain why therapies may have been abandoned. Were they ineffective, too expensive, unavailable, associated with side effects, or were there other reasons?

• Impact of the Symptom(s) on the Patient’s Quality of Life

  A symptom can produce many adverse effects on quality of life (see Table 3-3). The direct and indirect consequences of symptoms can exacerbate physical, psychosocial, spiritual, and financial burdens produced by the disease itself. Pain, for example, can restrict physical functioning or worsen depression and anxiety and interfere with a patient’s ability to interact socially. Attention must extend beyond symptom control to the impact of symptoms on the overall quality of the patient’s life.

  The Brief Pain Inventory (BPI) is a measurement tool that uses standardized questions to explore the impact of a symptom (see Figure 3-3).³³ See Figure 4-5 in Chapter 4 for the BPI Short Form. Question 23 on the BPI provides a good example of the kind of questions that providers should ask when exploring the impact of almost any symptom. Also, questioning should address side effects and costs of therapy. The latter must be included in assessment so that a feasible treatment plan can be developed.

A systems review is an important aspect of assessment. Especially when a patient is experiencing multiple symptoms, it is not uncommon for him or her to overlook reporting a bothersome problem. For this reason, and because unexpected minor symptoms may provide important diagnostic clues, it is prudent for clinicians to conduct a through systems review.

The patient’s history of other medical, surgical or psychiatric problems is important to elicit. These problems can, of themselves, contribute to distress, impact potential treatment strategies, and cause symptoms. This aspect of the historytaking should include a review of all relevant past medical, surgical and psychiatric problems.

A detailed history of drug therapy should include:

• Current and prior use of prescription medications
• Current and prior use of anti-retroviral therapies
• Current and prior use of non-prescription drugs including “alternative” or “complementary” medical therapies
• Drug allergies, and previous adverse drug reactions
• Prior treatment modalities for each symptom (determined earlier, when discussing each symptom)

A family history is an important aspect of assessment, especially in a patient with advanced disease. Clinicians may question the relevance of the causes of death of parents and siblings to the situation of a patient with established advanced disease. Family history, however, is very relevant because it is a crucial part of the life experience of an individual. It is additionally relevant in the setting of AIDS, since multiple family members may be HIV-infected and patients may have already lost other family members to the same disease. The experience of family members’ illnesses or deaths colors the life view and the fears of patients who themselves may be facing progressive disease and fearing the worst. Including questions about family members can help to elicit and—ultimately, if possible—allay fears.

Questions can include ones along the lines of “Did you provide the direct care for your mother/father/sister/brother/child/friend during that illness?” and/or “Were there things that your relative/friend experienced that have led you to worry about what you might encounter if your own illness were to progress?” Although this is a slight departure from the traditional family history and does lead into the social history, it is an approach that begins to address psychological symptoms such as anxiety, which in turn may be aggravating the distress of a “physical” symptom. For example, if a patient witnessed uncontrolled pain in a relative or friend, his or her assumption that this is the norm may influence his or her response to pain. As reflected by the inclusion of “friend” in the above questioning, with HIV-related illness it can be important to include the experience of others beyond family members in this line of questioning, either at this point or in the social history. A question to ask might be, “Have you known or cared for others with the same or a similar illness to the illness that you have?”

The social history provides an opportunity to elicit detail of the psychosocial assessment and can contribute to the clinician’s understanding of the individual’s distress and approaches that may assist in the modulation of that distress. Traditionally, in this part of an assessment, the clinician asks the patient about the following:

• Occupation
• Marital status
• Children
• History of smoking, alcohol use, and illicit drug use

These core aspects of the history are crucial. Of note, given that injection drug use is a risk factor for HIV infection and a factor that may interface with many aspects of symptom assessment and management, it is the most important factor to recognize. (Note: “aberrant” drugrelated behaviors may be uncovered in the process of eliciting a social history that may suggest problems with substance abuse or addiction. An approach to these is detailed in the section Challenging Clinical Situations and Special Populations.)

In patients with advanced disease, for many reasons, the social assessment should usually be broad. In addition to eliciting the core of the social history, initial historytaking should address the following:

• Psychosocial assessment should reflect an understanding of the many factors that modulate distress, such as personality, coping, and both past and present psychiatric disorders. Questions that address the concept of coping and resources can be helpful (e.g., Are there things or people in your life that give you strength and help you to cope as you face this illness?). These questions can also be symptom-specific (e.g., Are there things/people in your life that have been helping you to cope with fatigue?).
• Cultural and spiritual assessment should reflect an understanding of, and respect for, family cultural and spiritual dynamics and the patient and family expectations and preferences for medical care and interactions. This aspect of assessment is crucial, especially in relation to sensitive issues related to treatment decisions towards the end of life. Practical issues that arise in this aspect of the assessment can inform the development of treatment plans. For example, the clinician may come to understand the cultural or spiritual interpretation that a patient or family has in relation to interventions such as parenteral feeding or ventilator support near the end of life. In addition, for many patients, cultural and spiritual practices and support can help to alleviate distress.
• The clinician should become aware of the patient’s family and social resources, financial situation, and physical living environment. This point in the history also provides an important opportunity to ascertain who is likely to assist with the patient’s care in the home. Often, with advanced illness, family members are asked to function as health care providers in the home. A family member who serves as the “front-line” caregiver plays a key role in symptom management, administration of medications, and reporting problems; therefore, he or she can be a crucial help in ongoing symptom assessment and management.
• Knowledge of the patient’s and family’s previous experience with HIV infection or other progressive medical disease may provide useful insights into the response to physical illness or the genesis of psychological symptoms.

The social history provides the clinician with information that can assist in optimizing the care of the patient with advanced illness. It can also identify aspects of the patient’s illness experience and distress that may be best addressed by others on the health care team or in the community.

A review of goals of care should be considered in all new assessments of patients with advanced illness. This is often not included in historytaking but, like social history, is a highly relevant part of symptom assessment and can assist the clinician greatly in defining appropriate treatment strategies. It also, somewhat obviously, should assist the clinician in ensuring that the patient’s priorities and goals are respected. Clinicians should include current goals of care in the routine historytaking in a manner that reflects patient and family cultural preferences for communication.

The patient’s understanding of his or her current disease status usually should be assessed first. Although the exact approach to the patient may vary in certain cultures and family may play a large part in this discussion, goals should be explored as they relate to hopes for cure, lifesustaining treatments and comfort therapies. Once these goals have been elicited, a basis is developed on which a clinician and the patient—and, where appropriate, family—can begin to discuss treatment options and the realities of what can and cannot be achieved in the context of any newly defined problems. Especially in the later stages of illness, where resistant symptoms may be present, this very important aspect of the symptom assessment may influence decisionmaking significantly.

This is often a time in the historytaking when a question may also be appropriate about whether the patient or family has thought about or begun any advanced care planning. This sensitive area is addressed in detail in Chapter 21: Patient-Clinician Communication. The nature of the questioning will be influenced by the relationship of the patient and clinician and the cultural context in which the discussion occurs (e.g., “Perhaps we could talk over what you understand about your illness and how it has been going?”). It may be appropriate in some circumstances to ask about the patient’s hopes and goals for particular treatments and fears for the future. Approaches could include, “What concerns you most about your illness?” and “What are your hopes (your expectations, your fears) for the future?”³⁴

The approach to such questioning will obviously be different in some cultures. Also, different approaches are called for in situations in which a clinician has been the primary clinician caring for a patient over weeks, months or years as opposed to situations in which the patient is new to the clinician. Nonetheless, the clinician needs an understanding of what a patient understands about his or her stage of illness in order to begin dialogue about a symptom-related treatment plan. (Note: Patients’ understanding of their stage of illness can be a factor influencing their distress; for example, patients may assume that because pain is much worse, the underlying disease has significantly progressed).

Having elicited the medical history, the clinician should proceed with a physical examination and further assessment if needed to address symptoms. This aspect of assessment is important for establishing the etiology of (the pathophysiologic process responsible for) each symptom. In addition to a thorough physical examination, symptom assessment must include review of the available laboratory and imaging data, and if needed, further specialized evaluations.

• An examination should, at a minimum, include all body systems relevant to the particular symptoms. With advanced HIV disease, given that multiple symptoms may be present and that unexpected clinical findings are not uncommon, a full clinical examination is usually appropriate.
• Neurologic and mental state examinations are particularly important in advanced HIV-related disease.
• Specific radiological or laboratory tests may be appropriate to clarify the underlying pathophysiology of a symptom.
• Specialist assessments such as neurologic, dermatological, psychiatric, or other assessments may be appropriate to provide diagnostic input.
• Specific assessment may also be appropriate to identify other factors affecting distress and/or patient needs for psychosocial support or rehabilitative therapy.

At the conclusion of the history and examination, the clinician should seek to define a problem list and establish a treatment plan that includes symptom assessment and measurement over time.

• Definition of symptom etiology

  First the etiology of the symptom(s) should be defined, using knowledge of pain syndromes, other symptoms and common symptom complexes. Further, clinicians should recognize that a symptom may be isolated and caused by a new pathologic process or, alternatively, with multiple symptoms the situation may be more complicated. Symptoms may be concurrent but unrelated in etiology; concurrent and related to the same pathological process; concurrent with the one symptom directly or indirectly a consequence of a pathological process initiated by the other symptom (e.g. vomiting may induce hypokalemia that results in an ileus with nausea, bloating and constipation); or concurrent with one symptom occurring as a consequence or side effect of therapy directed towards treating the other.

• Problem list

  The clinician should create a problem list that reflects the clinical priorities, including, importantly, the patient’s priorities. The treatment of symptoms that are defined by the patient as particularly bothersome should be given high priority.

• Treatment plan

  If possible, the clinician should make a treatment plan for the etiology of the symptom(s). Some treatments can palliate a symptom by tackling the primary cause of the symptom. For example, in the case of sweats and chills associated with a fever, which in turn is caused by infection, a plan could be established for treatment of the infection with appropriate antibiotics; in the case of exhaustion and fatigue caused by anemia and exacerbated by depression, a plan could be made to treat the anemia and the depression.

  Sometimes, with advanced disease, a patient may elect not to seek treatment directed toward the cause of the problem. Such treatments themselves may be viewed as burdensome and possibly futile given the stage of the disease, particularly if the patient’s goals direct the clinician to focus solely on quality of life. In such cases, it is important for the clinician to guide the patient regarding the palliative outcomes likely with and without the treatment that would address etiology. For example, although a patient may have elected to avoid life-prolonging treatments there may be instances when antibiotics may be the most effective means of palliating a symptom.

  A treatment plan for the distress associated with the symptom should be established. Some treatments may palliate the symptom by direct impact on the distress caused by the symptom. The treatment of pain with analgesics is an obvious example. Another example is the treatment of sweats and chills associated with fever (see Table 3-2) with antipyretics such as acetaminophen or a non-steroidal anti-inflammatory medication and physical methods of cooling (including fanning, bathing, etc). Similarly, in a case of exhaustion and fatigue caused by anemia and exacerbated by depression it may be appropriate to consider a plan for counseling, support, assistance with daily activities, and other interventions to minimize the impact of fatigue (see Table 3-1).

• Monitoring plan

  A plan for monitoring the impact of symptom management over time is a crucial aspect of symptom assessment. Reassessment should be timely and practical. If a symptom is very severe or distressing, monitoring may need to be undertaken within the hour; if a symptom is less severe, a different schedule should be set up. A monitoring plan should be appropriate for the patient’s abilities. For example, if a patient cannot attend the hospital for a follow-up visit, a telephone call or home visit by a clinician may be a good method for monitoring. At times it can be most helpful to use a tool or instrument to facilitate effective monitoring and improve team communication in the health care setting; see following section, Symptom Assessment Methodology and Instruments.

Cognitive impairment may occur in advanced disease and in the imminently dying. In such situations, detailed symptom assessment may be difficult. Nonetheless, while giving attentive care at the bedside a provider can generally ascertain whether a patient is distressed and can then consider interventions that may be helpful in alleviating distress. Monitoring behaviors, including, for example, facial or physical movement, can be crucial in this process.

A recent small study of 14 patients with cancer pain and severe cognitive failure found that during episodes of agitated cognitive failure, pain intensity as assessed by a nurse was significantly higher than the patient’s assessment had been before and after the episode.³⁵ After complete recovery, none of the patients studied recalled having had any discomfort during the episode. These data are difficult to interpret, but do highlight some important issues relevant to assessment. The authors of the study suggest that patients who recover from a severe episode of delirium may have no memory of the experience, including the pain, and that medical and nursing staff are likely to overestimate the discomfort of patients with this condition. Although this may be true, another interpretation might be that patients with delirium may be acutely sensitive to many irritations including pain, noise and other factors, and therefore are at risk for compounded distress in the presence of both delirium and one of these irritants. It is apparent that if symptoms are to be controlled, clinicians must assess patients thoroughly to define each problem. When more than one problem is present (in this instance delirium and pain), each problem may warrant treatment in order to minimize distress; in this example, specific treatments may be needed for both pain and delirium.

Symptom assessment in children requires particular skill. Pediatric AIDS is a specialized area and discussed elsewhere.³⁶ (See Chapter 12: The Care of Children and Adolescents.) Briefly, the age of the child and his or her ability to provide a report will influence the symptom assessment. Older children who can provide answers to questions can be assessed with greater ease than younger children.

Careful attention to verbal cues and parental input is crucial in the pediatric population. Validated measures for many symptoms in this population are lacking, but a variety of measures have been developed for the assessment of pain including visual analogue scales, “faces” scales,^37-42 and observational scales such as the Observational Scale of Behavioral Distress⁴³ and the Procedure Behavior Checklist.³⁹

The Memorial Symptom Assessment Scale (MSAS) has been adapted for use in children aged 10 to 18 years of age (see Figure 3-1). The MSAS can provide multidimensional information about symptoms experienced by children. Its pediatric use to date, however, has been in the population with cancer and in the research setting rather than in clinical care.⁴⁴

Additional tools specifically for measuring pain in pediatric patients are presented in Figures 3-4 (a-d).

Symptom assessment and measurement can also present challenges in patients who differ in culture and language from the professionals providing their care. In cases where language barriers exist, meticulous attention should, where possible, be given to skilled translation. When measuring symptoms, only a few instruments have been shown to be reliable and valid across cultures and languages.^{45, 46} Translation and appropriate symptom measures must be used.

In the clinical setting, health care professionals can use simple, face-valid symptom measures to overcome language barriers. At the initial assessment the clinician can spend time with the patient and an interpreter to develop a simple, two-language verbal rating scale for symptoms, which can be kept by the patient’s bedside. To monitor the level of distress and impact of interventions, such scales should address both symptom intensity and relief. This approach will help to ensure that symptom distress is minimized even when interpreters are not available. In addition, historytaking should explore cultural barriers to symptom assessment and management.

Clinicians frequently report that symptom assessment is especially challenging when the patient has a previous or current problem with substance abuse or addiction. In addition, difficulty with symptom assessment also is common in situations in which the clinician is concerned that a substance abuse problem may be present. In these situations, the assessment and management of pain presents many difficult clinical issues.⁴⁷ However, as highlighted by Passik, et al., “virtually any drug that acts on the central nervous system and any route of drug administration, can be abused.” ^{48, 49} The implication is that assessment of substance abuse is important when assessing a wide variety of symptoms including pain, anxiety, depression, insomnia and many others. In cases where substance abuse is defined as a problem, experience and skill in caring for such patients can be invaluable as the issues involved in care can be very complex.⁴⁷

A full discussion of the assessment of the patient with a past history of, or active involvement in, substance abuse is beyond the scope of this chapter. (For a more in-depth discussion, see Chapter 11: Substance Use Problems.) The complex issues involved in the medical care of this population have been extensively reviewed in other texts.^47-50 Such care must include attention to both the HIV-related illness(es) and the substance abuse, along with the social and medical issues that each involves. In addition, it is important that clinicians who care for people with substance use problems be committed to providing optimal medical care. Such care must involve symptom management. An ongoing relationship between the clinician and patient that can foster both trust and continuity of care is optimal in all cases of advanced illness and is also desirable in this setting.

A detailed history, as described in this chapter, should be undertaken in those with, or suspected to have, a history of substance use problems. As in all cases of patients reporting distress, it is crucial for clinicians to focus on the detail of symptoms and on the distress associated with them, in order to define the underlying pathology and diagnosis and develop a treatment plan. Careful assessment, combined with knowledge on the part of the clinician of pain syndromes, other symptoms, and common symptom complexes should facilitate the development of a diagnosis and treatment plan. Careful attention should be given specifically to assessment for concurrent psychiatric conditions, many of which have an increased prevalence in people who have problems with substance use. Initially, it is important for the clinician to learn about the patient’s current status with regard to drug use and the situations and triggers that, in the past, may have prompted the patient to turn to substance abuse. Clearly not all patients will be forthcoming with information relating to their substance use activities. Any inconsistencies that are uncovered during historytaking or from other clinicians or family must also be noted and their implications considered.

In cases where substance abuse is being considered, eliciting the patient’s social history is vital, as is speaking with others involved in the patient’s medical care, where this is possible and with respect for privacy issues. In this context it is important to consider the concept of aberrant drug-related behaviors.^{48, 49} These include a broad range of behaviors that have been considered problematic by clinicians prescribing opioids for pain. Table 3-4 presents the spectrum of aberrant drug-related behaviors clinicians may encounter during treatment of the medically ill with prescription drugs.^{48, 49}

If aberrant behaviors are identified in a patient, the differential diagnosis of these behaviors should be explored (see Table 3-5). Aberrant behavior may occur in the setting of addiction. It also seems likely that some behaviors are more suggestive of addiction than others. The differential diagnosis of all of these behaviors is broad and includes many diagnoses and problems other than addiction.^{48, 49} Psychiatric disorders, confusional states, pseudo-addiction and criminal intent are among the problems that should be considered. Pseudo-addiction refers to the presence of behaviors that are suggestive of addiction in a patient whose problem is not addiction, but rather, unrelieved pain. In addition, social problems may be behind such behaviors, and occasionally a behavior listed as aberrant may occur in a patient who simply does not adhere to the norms of social conventions. For example, a patient may borrow medications from another without obtaining a physician’s prescription and although this is listed as an aberrant behavior it may be an isolated event occurring in the absence of serious problems.

It must be recognized that undertreatment of pain is currently a more common problem in most clinical settings (including the HIV clinical setting) than addiction and substance abuse. Nonetheless, consideration and monitoring of aberrant behaviors can provide clinicians with important information that can assist in assessing and treating symptoms and defining problems. The management of patients who have problems with substance abuse, and/or engage in aberrant drug-related behaviors for other reasons “necessitates a comprehensive approach that recognizes the biological, chemical, social, and psychiatric aspects of substance abuse and addiction and provides practical means to manage risk, treat pain effectively and ensure patient safety.”^{48, 49}

Recently it has been recognized that the use of symptom measurement raises the possibility of improving outcomes through careful and ongoing monitoring of distress. For example, the regular monitoring of pain in hospital settings is recommended to assess pain severity and relief in all patients at risk for pain.^{51, 52} Further, recommendations also suggest that clinicians should teach patients and families to use assessment tools in the home to promote continuity of pain management in all settings.

The principles involved in routine pain assessment may be usefully applied for other symptoms. It is likely that the measurement of symptoms:

• Can improve patient outcomes by increasing staff awareness of symptoms, distress and the response of symptoms to treatment interventions
• Has the potential to increase patient attention to reporting distress

A wide array of instruments is available for the assessment of symptoms. Numerous methods and instruments have been validated for the assessment of symptoms, including instruments for the assessment of pain and depression. However, few instruments have been validated for many of the other symptoms that are prevalent in advanced HIV-related disease, such as anorexia or change in appearance. Although it is beyond the scope of this chapter to review all of the instruments available for the assessment of symptoms, broadly these instruments fall into two categories, as follows:

• Symptom-specific instruments
• Instruments for the assessment of multiple symptoms

Some instruments are more applicable in the research setting than in the clinical setting. When considering the use of instruments in the clinical setting, many factors must be considered, as presented in Table 3-6. It is not always crucial for patients to complete a written instrument. In many cases, a verbal interaction between the patient and clinician that elicits a “measure” of a symptom can provide a useful report. For example, the clinician may ask, “Can you tell me on a scale of 0 to 10 what level your pain is at right now? Zero refers to no pain and 10 the worst possible pain.”

The following discussion presents the range of options available and the practical issues that may be important in selecting a method or instrument for monitoring a particular symptom in a particular clinical setting. Specific instruments are discussed in detail, and some are illustrated by figures or tables. A more comprehensive review of this subject can be found in the Oxford Textbook of Palliative Medicine.¹⁷

Instruments for the assessment of symptom intensity or relief are usually unidimensional scales and include visual analogue, numerical and categorical scales. Scales using numbers (e.g., zero to 10), words (e.g., “no pain,” “mild,” “moderate”), faces, and other observational scales, have been the traditional focus of pain measurement (see Figures 3-2 and 3-4).^{32, 37-43} While similar scales have not been validated for all symptoms, an approach in which symptoms are “anchored” with numbers or words can be useful in the routine assessment of symptoms. Increasingly clinicians are using pain scores routinely in the inpatient setting along with the recording of vital signs.

A more comprehensive evaluation of symptoms and their impact can be elicited by using instruments that define the multiple dimensions of a specific symptom. These instruments are usually longer and often, therefore, less useful for routine use. An example of such an instrument is the Brief Pain Inventory, shown in Figure 3-3.³³ This instrument serves to elicit a pain history, intensity, location and quality. Numeric scales (range one to 10) also indicate the intensity of pain: pain at its worst, at its least, and pain “right now.” A percentage scale quantifies relief from current therapies. A body figure allows localization of the pain. Seven questions evaluate the degree to which pain interferes with function, mood and enjoyment of life. This instrument has now been translated into several languages.

The Memorial Pain Assessment Card (MPAC) is a brief, validated measure that uses visual analogue scales to characterize pain intensity, pain relief and mood, and an eight-point verbal rating scale to further characterize pain intensity (see Figure 3-2). The MPAC includes a mood scale that correlates with measures of overall psychological distress, depression and anxiety, and is considered to be a valid measure of global psychological distress. This instrument provides limited information but it is simple to use and reliable and therefore a feasible instrument to use on a regular basis for monitoring difficult pain.³²

Fatigue is a symptom that is among the most prevalent in patients with advanced HIV-related illness. Its measurement provides an example of the complexity of measurement. Assessing fatigue is most important in the HIV-infected population as fatigue has been associated with significantly poorer physical functioning as well as a greater degree of overall psychological distress and lower quality of life.³ Unlike pain, fatigue has no generally accepted definition. In addition, fatigue itself may impose limitations on routine assessment.

Fatigue is most usually characterized by a spectrum of disturbances that includes, among others, the following:

• Muscular weakness
• Lethargy
• Sleepiness
• Mood disturbance (particularly depression)
• Cognitive disturbances (such as difficulty concentrating)

As a consequence of this complexity, the measurement of fatigue must attempt to capture this spectrum of disturbances. Although unidimensional scales can and have been used to assess fatigue, clearly a more meaningful assessment will evaluate its temporal dimensions, physical and psychological components, and associated distress.

Unidimensional fatigue scales include single items in symptom checklists and the fatigue subscale of the Profile of Mood States.^{53, 54, 55} Another approach involves the assessment of specific symptoms associated with fatigue—for example, a visual analogue scale is used to assess “drowsiness” and other scales are used to evaluate the patient’s cognitive status. Several multidimensional scales exist, including the 41-item Piper Fatigue Self Report Scale (PFS), which addresses the severity, distress, and impact of fatigue⁵⁶ and the Visual Analogue Scale-Fatigue measure, an 18-item, multidimensional patient-rated instrument.⁵⁷ While these scales are more applicable in the research setting than in the general clinical setting, the issues involved in the assessment of fatigue highlight the need for accurate historytaking so the dimensions of the symptom that is distressing the patient can be clearly defined.

Instruments to detect the presence of symptoms that may otherwise go unnoticed include those instruments that routinely ask patients about the presence or absence of a symptom (or multiple symptoms) and those that assess for the presence of impaired cognition. Some symptoms may not be reported but may nonetheless be important. Consequently, clinicians may elect to include routine measuring of such symptoms in clinical care. For this purpose, clinicians may use instruments for the assessment of a single symptom (e.g., pain) or multiple symptoms.

Cognitive impairment and its associated symptoms, problems common in hospitalized patients and those with far advanced illness, are amenable to such routine monitoring. There are many instruments available for cognitive assessment.⁵⁸ In the clinical setting, some clinicians include brief cognitive screens in routine assessment to improve their ability to detect such problems. Screening tests for cognitive impairment include the Mini Mental Status Exam⁵⁹ and the Blessed Orientation-Memory-Concentration Test,⁶⁰ Figures 3-5 and 3-6, respectively. Although these tools have been shown to be sensitive indicators of impairment,^{61, 62, 63} clinicians must be cautioned that the instruments are not specific for the diagnosis of delirium or dementia, both of which may occur in advanced HIV-related illness. Further assessment would be needed to make these diagnoses. (See Chapter 10: Psychiatric Problems.)

Instruments may be needed to assess and monitor multiple symptoms. To date, only a small amount of research has focused on the role in routine clinical use of instruments that assess multiple symptoms. Even less information is available that applies directly to patients with HIV infection.

In clinical settings, the main problem with instruments that assess multiple symptoms has been their length (which may limit their clinical utility for routine use). Nonetheless, some instruments are available that could be considered for use in monitoring multiple symptoms. The Edmonton Symptom Assessment Scale (ESAS) is a nine-item, patient-rated symptom visual analogue scale developed for use in assessing the symptoms of patients receiving palliative care.⁶⁴ The ESAS, Figure 3-7, has been shown to be a valid instrument in cancer populations.⁶⁵ In addition to assessing specific symptoms, it contains a “distress” score that tends to reflect physical wellbeing. Additional studies are needed to confirm its value in patients with HIV-related illness.

The Memorial Symptom Assessment Scale (MSAS)⁶ is a validated, patient-rated measure that provides multidimensional information about a diverse group of common symptoms (see Figure 3-1). This instrument assesses 32 physical and psychological symptoms in terms of intensity, frequency and distress. The MSAS has been used in research studies of patients with advanced HIV-related illness and has been modified for the pediatric setting.^{3, 5, 44} Although this is a most helpful measure in research settings, its utility in the routine clinical setting may be limited. Recent research has, however, explored the role of an MSAS short version (Figure 3-8) that may be more useful in the clinical setting.⁷

Holzemer, et al., recently published research to validate a sign and symptom assessment tool for assessing the intensity of HIV-related symptoms.⁶⁶ The current version is a 26-item scale. This instrument is also likely to be used in the research setting; however, clinicians may wish to consider its clinical applications.

Some clinical signs may be useful indicators of symptoms and therefore it may be helpful to monitor these routinely in certain clinical settings. For example, the monitoring of patient temperature or the frequency of bowel movements and/or emesis may be useful routine methods of detecting—or even anticipating and preventing—symptoms that relate to these signs (e.g., sweats, chills, abdominal pain, and nausea).

In summary, measurement has a key role in the assessment of symptoms. Although measures frequently have limitations, if clinicians remain aware of these limitations the measurement of symptoms is likely to enhance their ability to effectively monitor and treat patient distress.

Systematic symptom assessment is a foundation of clinical practice and is crucial in treating HIV-related disease. Careful and meticulous clinical assessment should elicit the patient’s perception of distressing symptoms and the pathophysiology responsible for each symptom. A comprehensive assessment will facilitate the development of a treatment plan that can focus on treating reversible pathologic processes, alleviating distress, and promoting quality of life.

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