PAIN AND PHYSICAL SYMPTOMS

Literature review

A literature review of the Medline data base was conducted with the search terms pain, measurement, and terminal care or palliative care. We also searched the Cancerlit database. We found at total of 260 articles published between 1983 and 2000. Additionally, we selected references from the methods sections of those articles pulled, and an online catalogue was searched for relevant books.

I. Listing of potential instruments

Based on a review of these 260 articles, we found 64 potential instruments which are listed below:

Pain scales

The Breakthrough Pain Questionnaire (Portenoy et al, 1999) – an instrument with explicit questions identifying patients with breakthrough pain.

Brief Pain Inventory (Cleeland 1994) - an assessment tool for cancer patients developed by the Pain Research Group of the WHO Collaborating Center for Symptom Evaluation and Cancer Care. The tool measures the intensity of pain and interference of pain in the patient’s life, and has been used as an outcome measure in advanced cancer patients (Twycross 1996).

City of Hope Mayday Pain Resource Center Pain Audit Tools - including a chart review component, a patient interview component, and a chart review for surgical service. For information, visit the Pain Resource Center website at http://prc.coh.org, or contact PRC via email at prc@coh.org.

City of Hope Mayday Pain Resource Center Patient Pain Questionnaire - a 16 item ordinal scale that measures a patient’s knowledge and experience in managing chronic cancer pain. There is also a Family Pain Questionnaire that measures the family caretaker’s knowledge and experience. For information, visit the Pain Resource Center website at http://prc.coh.org, or contact PRC via email at prc@coh.org.

Descriptor Differential Scale (Gracey 1988) - measures the sensory and affective components of pain using a magnitude ratio scale.

Integrated Pain Score (Ventafridda 1983) - an instrument designed to take into account both pain intensity and duration.

McGill Pain Questionnaire (Melzack 1975) and Short-Form McGill Pain Questionnaire (Melzack 1987) - questionnaires incorporating a series of adjectives to describe the characteristics and intensity of pain. The longer version of this instrument was used by Kane and colleagues to evaluate a clinical trial of hospice care (Wales 1983).

Memorial Pain Assessment Card (Fishman 1987) – a two-sided card that measures pain intensity and the patient’s mood on one side, and has a modified version of the Tursky Pain Description Scale on the other.

Numerical Rating Scale – various authors have commented on a scale where the patient is asked to rate the pain from 0 to 10 (or 0 to 100). This measure is simple with a high rate of completion. See Karoly and Jansen 1987.

Pain as assessed in the Medical Outcomes Study (Hays 1990) – pain is measured in terms of its severity, duration, frequency, and impact on behavior and mental well being.

Pain Disability Index (Tait et al. 1987) - is an instrument designed to measure the impact of chronic pain on various daily activities. The instrument has been employed in a study which examined physical and psychological morbidity after node dissection for breast cancer (Hack et al. 1999).

Pain Management Index (Cleeland et al. 1994) – compares the most potent analgesic with reported level of pain. The PMI has been emplyed in a study examining treatment for chronic cancer pain (de Wits et al. 1999).

Pain Perception Profile (Tursky 1976) - an instrument measuring the affective, sensory and intensity dimensions of pain.

Patient Outcome Questionnaire (American Pain Society 1995) - questionnaire designed as part of the APS’s guidelines for pain treatment. The instrument measures pain severity, interference, satisfaction with pain control, and various aspects of pain treatment and medication.

TQPM the Cancer Total Quality Pain Management Patient Assessment Tool (Paice et al, 1998) – this instrument measures pain management outcomes, expectations, barriers and satisfaction of in-patients as well as out-patients.

Unmet Analgesic Needs Questionnaire (Zhukovsky 1994) - a tool designed for cancer patients to measure prevalence and intensity of pain, and identify characteristics associated with unmet analgesic needs and dissatisfaction with pain control.

Verbal Rating Scale – There are many forums of verbal rating scales. See Lasagna, 1988 for a discussion.

Visual Analogue – various authors have utilized a VAS to record various aspects of pain control. They usually are 100mm lines with two words that anchor different end of the spectrum (e.g., pain as bad as it can be, … no pain).

West Haven-Yale Multidimensional Pain Inventory (Kerns 1985) - a 52 item chronic pain inventory.

Wisconsin Brief Pain Questionnaire (Daut 1983) – a self-administered questionnaire which measures pain at its worst, its least, average, and right now. Additionally, it uses a check list of adjectives to characterize the pain and information is collected on the impact of treatment and the impact of pain on function.

Specific Symptoms

ATS-DLD-78 Adult Questionnaire (ATS 1969) - a questionnaire designed by the American Thoracic Society that assesses cough, phlegm, wheezing, breathlessness, illness and risk factors. . Visual analogue scale to evaluate fatigue severity (Lee 1991).

Baseline Dyspnea Index (Mahler 1988) - a clinically derived index of the severity of patient dyspnea based on functional impairment, magnitude of tasks that result in dyspnea, and the degree of effort that produces dyspnea.

Borg Rating of dyspnea (Belman 1991) - scale that utilizes magnitude estimation to assess dyspnea.

Chronic Lung Disease (CLD) Severity Index (Selim et al., 1997) – this is a 6-item index measuring shortness of breath, wheezing and coughing.

DAQ The Dyspnoea Assessment Questionnaire ( Zeppetella 1987) - is a questionnaire that asks the patient to pick one word from each of the 16 catagories that describes his/her breathlessness over the last 24 hours. In addition it requests that the patient marks on a line (between not at all breathless and as breathless as I could possible feel) the average level of breathlessness he/she has experienced over the last 24 hours.

Dementia Rating Scale (Mattis 1988) – this instrument includes scales for attention, initiation (verbal and motor), grapho-motor construction, and memory. The Dementia Rating Scale has been used to study predictors of mortality medically ill older adults (Arfken et al 1999).

ESS Epworth Sleepiness Scale (Johns 1991) - is an 8-item self-administered questionnaire that measures a subject's general level of daytime sleepiness. This instrument has been employed in a study on fatigue in prostate cancer patients receiving radiation therapy (Monga et al 1999).

FQ The Fatigue Questionnaire (Chalder et al., 1993) – is an 11-item instrument which measures, physical and mental fatigue. The FQ was used in a study that examined the relationship between fatigue and pain (Kaasa et al. 1999).

FSI Fatigue Symptom Inventory (Hann et al, 1998) – is a 13-item self-administered questionnaire which measures the intensity and duration on fatigue and its effect on quality of life.

FSS Fatigue Severity Scale (Krupp et al, 1989) – is a 9-item scale which measures the presence of fatigue and its impact on daily life.

Medical Research Council Dyspnea Scale (Brooks 1982) - a scale grading dyspnea from 0 (not troubled with breathlessness except with strenuous exercise) to 4 (too breathless to leave the house or breathless when dressing or undressing).

MFSI Multidimentional Fatigue Symptom Inventory (Stein et al., 1998) – is an 83-item instrument that measures global, somatic, affective, cognitive, and behavioral symptoms of fatigue.

Piper Fatigue Scale (Piper et al, 1989) – this instrument is a subjective measure of fatigue in cancer patients and assesses the amount and level of fatigue, degree of stress or interference experienced in daily activities, and feelings or sensations that indicate fatigue.This instrument has been used in a study of fatigue in localized prostate cancer patients (Monga et al. 1999).

QOL of life in chronic lung disease (Guyatt 1987) - an multidimensional index to assess outcomes of clinical trials in patients with COPD.

SGRQ The St George’s Respiratory Questionnaire (Jones et al., 1992) – contains questions regarding the relationship between symptoms, activity and impact and dyspnea.

University of Cincinnati Dyspnea Questionnaire (Lee et al., 1998) – this is a 30-item self-administered and experimenter-administered instrument measuring shortness of breath while completing activities of daily living.

UCSD SOBQ University of California, San Diego Shortness of Breath Questionnaire (Eakins et al., 1998) – is a 24-item self-administered instrument which, assesses shortness of breath while a person completing a number of activities of daily living.

Combined Assessment Scales

BCM20 Brain Cancer Module (Osoba, et al., 1996) – is a 20-item instrument which contains 4 multi-item scales (future uncertainty, visual disorder, motor dysfunction and communication deficit) and 7 single items assessing headache, seizures, drowsiness, hair loss, itching, weakness of both legs and bladder control. This instrument is designed specifically to supplement general questionnaires such as the QLQ-C30.

Cancer Rehabilitation Evaluation System (Schag 1991) - a 59 item scale that measures rehabilitation and quality of life in patients with cancer. This has been modified to the HIV Overview of Problems Evaluation Systems (HOPES, Schag, 1992).

COH City of Hope Quality of Life (Ferrell 1995) - a 38 item ordinal scale representing the four domains of quality of life including physical well being, psychological well being, social well being and spiritual well being has been employed in a study (Juarex et al. 1999) which looked at the impact of cultural diversity on cancer pain management. Also available is a 41-item Cancer Specific version of the COH.

COOP Charts (Nelson 1996) – a series of charts utilizing drawings for quick assessment in an outpatient setting.

Edmonton Symptom Assessment System (Bruera 1991) – eight visual analogue scales measuring pain, activity, nausea, depression, anxiety, drowsiness, appetite, shortness of breath, and well being.

EORTC QOL-30 (Aaronson 1993) - this instrument is composed of modules to assess quality of life for specific cancers in clinical trials. The current instrument is 30 items with physical function, role function, cognitive function, emotional function, social function, symptoms, and financial impact.

Hospice Quality of Life Index (McMillian 1994) – a 25 item scale specifically developed to measure quality of life in hospice. Domains measured include physical, psychological, spiritual, social and financial well being.

Lung Cancer Symptom Scale (Hollen 1992) – 9 visual analogue scales which measure symptoms that are prevalent in lung cancer.

McGill Quality of Life Questionnaire (Cohen 1995) – a 20 item scale developed to measure quality of life at the end of life.

Memorial Symptom Assessment Scale (Portenoy 1994) - a verbal rating scale which measures 32 psychological and physical symptoms in terms of the presence, frequency, severity, and degree of distress.

Modified Karnofsky Performance Scale (KPS) (Koster et al 1987 ) - is a nine catagory scale which addresses both physical performance and level of pain. This is a modified version of the Karnofsky Performance Scale which measured physical performance only (Karnofsky et al 1948).

National Hospice Study (Greer 1983, 1988, Reuben 1988)—an instrument that incorporated the Melzack Pain Index and assessed 14 symptoms.

PROSQOLI Prostate Cancer Specific Quality of Life Instrument (Tannock et al. 1989) – this instrument measures pain, fatigue, appetite, constipation, physical activity, mood, family/marriage relationships, overall well-being, passing urine and present pain intensity. The PROSQOLI has been employed in a trial comparing it to the EORTC QLQ-C30 and a Trial Specific Module (Stockler et al. 1998).

Prostate Cancer Index (Litwin et al 1998) - a multidimensional index that examines generic quality of life based on the work of Ware and colleagues, with new scales of sexuality and urinary symptoms for patients with prostate cancer.

Quality of Care In Prostate Cancer, (Fowler, in press)—a 24 item instrument that assesses the process of care, results of care, complications due to care, self rated health, rating of care, and how the patient felt things worked out.

Quality of Well-Being Scale (Kaplan, 1994) -- this scale assesses mobility, physical activity, social activity, and 27 symptoms. The scale is unique in that it can summarize a patient’s quality of life as a single number.

Rotterdam Symptom Checklist (de Haes 1990) – a 34 item checklist of the degree to which cancer patients are bothered with a given symptom.

SOLQ Seattle Obstructive Lung Disease Questionnaire (Tu et al. 1997) - is a 29 item instrument which measures physical function, emotional function, coping skills, and treatment satisfaction.

SSC-HIV Sign and Symptom Check-List for Persons with HIV Disease (Holzemer et al, 1999) – is a 26-item instrument which assesses malaise/weakness/fatigue, confusion/distress, fever/chills, gastrointestinal discomfort, shortness of breath, and nausea/vomiting.

Support Team Assessment Schedule (Higginson 1992) – an instrument designed for palliative care that includes items such as pain and symptom control, patient and family anxiety and service needs.

Symptom Distress Scale (McCorkle 1978) –this 10 item scale measures degree of distress with ten common symptoms, including appearance.

Symptom scale (Oleson, unpublished) – utilized in Kane and colleagues’ study of hospice. This is an unpublished scale.

TIQ Therapy Impact Questionnaire (Tamburini et al., 1992) – is a 36-item questionnaire that assesses disease and therapy impact relating to physical symptoms, functional status, concomitant emotional and cognitive factors and social interaction.

UW-QOL University of Washington Quality of Life questionnaire (version 1) (Hassan et al., 1993)- measures areas relating to head and neck cancer such as pain, disfigurement, activity, recreation/entertainment, employment, speech, chewing, swallowing, and shoulder disability. This instrument has been employed in a study which compared the UW-QOL to the Medical Short From 36, EORTC QOQ-C33 and EORTC Head and Neck 35 (Rogers et al. 1998).

VITAS Quality of Life Index (Byock, 1995) - there are two versions of this quality of life index that assesses symptoms, function, interpersonal domains, well being, and transcendence.

Voices (Hall, personal communication) - see satisfaction section.

Well-Being Scale (Giasson, 1994) – this is a self-administered visual analogue scale that measures pain, nausea, depression, anxiety, shortness of breath, activity, appetite, relaxation, and inner peace.

II. Review of potential instruments

I have identified the following instruments to review—Memorial Symptom Assessment Scale, Memorial Pain Assessment Card, Edmonton Symptom Assessment Scale, Wisconsin Brief Pain Questionnaire, and the McGill Pain Questionnaire.

a. Memorial Symptom Assessment Scale (Portenoy 1994)

i. Conceptual and Measurement model (Does the scale represent a single domain or do model scales measure distinct domains? Is the variability of the scale reported? If so, please document it. What is the intended level of measurement i.e., ordinal, interval, ratio or category?)

The Memorial Symptom Assessment Scale (MSAS) is a multidimensional scale developed to measure the prevalence, characteristics, and distress of common symptoms.

Factor analysis revealed various subscales: psychological state, which can be divided into an emotional symptom subgroup and a concentration subgroup; high frequency physical symptoms, which can be divided into a subgroup related to pain and pain treatment and a subgroup related to gastrointestinal distress; and low frequency symptoms. The authors also sought to identify a brief subscale that could be used as a measure of global symptom distress. The combination of ten items including frequency of emotional symptoms and distress items from pain and treatment revealed the highest correlations, and was termed the MSAS Global Distress Index. The intended level of measurement is ordinal.

ii. Reliability (Did they address internal consistency? Did they address reproducibility?)

Internal consistency was found to be high for high prevalence symptoms and psychological state subscales (Cronbach a .88 and .83). Internal consistency for the pain subgroup was also high (a=.87) and moderate for gastrointestinal distress (a=.75). For low prevalence symptoms, internal consistency was low (a=.580). Reproducibility was not addressed.

iii. Validity – (How did they address content related validity? Any information on construct related validity? Any information on criterion validity?)

The correlation between mean severity scores and mean frequency scores across symptoms was r=.80; the correlation between mean severity scores and mean distress scores was r=.70; and the correlation between mean frequency scores and mean distress scores was r=.43. Pairwise correlation was calculated, revealing an average correlation of r=.65 (range .27-.80) for severity and frequency; an average correlation of r=.67 (range .43-.87) for severity and distress; and an average correlation of r=.55 (range .21-.77) for frequency and distress. Canonical correlation findings suggested that the distress measure was the single most informative dimension.

Validation measures (RAND Mental Health Inventory well-being subscale, RAND distress subscale, Symptom Distress Scale, Functional Living Index-Cancer, and Karnofsky Performance Scale, Memorial Pain Assessment Card) were correlated with total MSAS scores, single dimensions of severity, frequency, and distress and major symptom groups averaged across all three dimensions. Highly significant association was found between the MSAS and MSAS subscales and the validation measures. The authors tested construct validity by comparing MSAS scores in populations that varied clinically. Predictions that inpatients would have higher symptom distress than outpatients were confirmed.

iv. Responsiveness (Any information? Has the scale ever been used as an outcome measure? If so, in what populations?)

The MSAS was used as an outcome measure for quality of life in Seidman et al’s study of quality of life in advanced breast cancer patients receiving chemotherapy (Seidman 1995). Longitudinal data were analyzed associating tumor response to changes in quality of life scores throughout the course of treatment. MSAS was also used to assess symptoms as a component of Ingham et al’s study of quality of life as an outcome in cancer clinical trials (Ingham 1996).

v. Interpretability (What populations has it been applied to? Is the score translated into a clinically relevant event? Does the score predict outcome events?)

MSAS has been utilized in AIDS patients and cancer patients. The 10-item Global Distress Index was considered to be the most clinically useful subscale as it is easy to interpret and can be used alone.

vi. Burden (Any information on cost or time to administer? Does the instrument impact on the respondent? How long does a survey take to complete? Response rates? Any problems with missing data?)

In a study of 246 cancer patients, completion rate of the MSAS was considered acceptable. The scale asks about prevalence, severity and distress for 32 symptoms or conditions in the last week.

vii. Alternative forms (What are the modes of administration? Alternatives? If alternative exist, provide what is known for each of the above categories)

The MSAS can be self-administered or interviewer administered. The 10-item Global Distress Index can be used alone if global symptom distress is the only characteristic of interest.

viii. Cultural and Language Adaptations (Any information?)

No information available.

b. McGill Pain Questionnaire (Melzack 1975), Short-Form McGill Pain Questionnaire (Melzack 1987)

The McGill Pain Questionnaire (MPQ) is used to specify subjective pain experience using sensory, affective and evaluative word descriptors. There are three major measures: the pain rating index, based on two types of numerical values that can be assigned to each word descriptor; the number of words chosen; the present pain intensity based on a 1-5 intensity scale.

The short form of the McGill Pain Questionnaire (SF-MPQ) contains 11 questions referring to the sensory dimension of the pain experience and four related to the affective dimension. Each descriptor is ranked on a four point intensity scale (0=none, 1=mild, 2=moderate, 3=severe). The pain rating index of the standard MPQ is also included as well as a visual analogue scale.

ii. Reliability (Did they address internal consistency? Did they address reproducibility?)

Melzack (1975) reported that consistency of word choices by ten cancer patients over three days ranged from 50% to 100%, with a mean of 70.3%. Reading (1983) found that repeated administrations of the MPQ to cancer patients revealed a consistency index of 75% (range 35 to 90%) between the first two administrations, which decreased to 66% and then increased to 80% over the course of weekly assessments. Graham (1980) found the MPQ to be highly replicable in two subjective samples, with similar findings to Melzack in a different cancer pain patient sample. Over four administrations, Graham found the consistency of pain descriptor subclass to be high, ranging from 66% to 80.4%. In a study of patients with chronic low back pain, Love et al (1989) found a very strong test-retest coefficient for the pain rating index.

iii. Validity – (How did they address content related validity? Any information on construct related validity? Any information on criterion validity?)

Elevations of the affective score of the MPQ have been related to increased scores on depression instruments in cancer patients (Kremer 1981). Affective scores were found to contribute to the prediction of Minnesota Multiphasic Personality Inventory (MMPI) profiles (McCreary 1981).

A review by Reading et al (1989) revealed that the distinction between sensory and affective dimensions has been well documented, but debate exists on the separation of the affective and evaluative dimensions. The sensory, affective, and total scores of the MPQ and SF-MPQ were found to be significantly correlated (Melzack 1987).

iv. Responsiveness (Any information? Has the scale ever been used as an outcome measure? If so, in what populations?)

The MPQ was developed to indicate the extent of change in pain quality and intensity as a result of an intervention. Both the MPQ and SF-MPQ demonstrate the effects of analgesic drugs, epidural blocks, and TENS. Also, the MPQ was used to assess pain in the UCLA Hospice Evaluation Study.

v. Interpretability (What populations has it been applied to? Is the score translated into a clinically relevant event? Does the score predict outcome events?)

The MPQ has been widely used, including numerous studies of terminally ill patients. Melzack et al (1976), Barkwell et al (1991), used the MPQ in studies of terminal cancer patients. The MPQ was used to measure pain in Kane (1985) and colleagues’ and Wales (1983) and colleagues’ studies of hospice patients. Additionally, studies have shown that MPQ descriptor patterns can discriminate between known pain syndromes, major types of known back pain, and facial pain (Turk 1992 book). A comparison of MPQ scores for acute pain and chronic pain revealed that patients with acute pain displayed a greater use of sensory word groups while chronic pain patients used affective and evaluative groups with greater frequency (Reading 1982).

vi. Burden (Any information on cost or time to administer? Does the instrument impact on the respondent? How long does a survey take to complete? Response rates? Any problems with missing data?)

The MPQ takes 5-10 minutes to administer, and the SF-MPQ 2-5 minutes.

vii. Alternative forms (What are the modes of administration? Alternatives? If alternative exist, provide what is known for each of the above categories)

The SF-MPQ was developed to provide a brief assessment. The MPQ and SF- MPQ can be interviewer administered or self administered.

viii. Cultural and Language Adaptations (Any information?)

The MPQ has been translated into Spanish, Danish, Arabic, Chinese, French, German, Italian, Japanese, Norwegian, Polish, and Slovak.

c. Memorial Pain Assessment Card (Fishman 1987)

The Memorial Pain Assessment Card (MPAC) is a 8.5 by 11 inch card designed to provide a rapid evaluation of pain intensity, pain relief, and psychological distress. The scale is made up of eight pain intensity descriptors and three visual analog scales that measure pain intensity, pain relief, and mood.

ii. Reliability (Did they address internal consistency? Did they address reproducibility?)

Ongoing at this time.

iii. Validity (How did they address content related validity? Any information on construct related validity? Any information on criterion validity?)

The McGill Pain Questionnaire, the Profile of Mood States, the Zung Anxiety Scale and the Hamilton Rating Scale for Depression were used as validation measures for the MPAC.

The construct validity of the MPAC was supported by correlations among subscales that are consistent with expected relationships among pain intensity, pain relief, and mood. The pattern and strength of the correlation between the subscales of the MPAC and the McGill Pain Questionnaire suggests that the two can provide reasonably equivalent assessment of the intensity of pain. The visual analog rating of pain and the total word count on the MPQ were strongly correlated, indicating that patients who rate their pain as more intense on a visual analog scale also tend to describe their pain verbally with more words. None of the MPQ subscales correlated significantly with the VAS rating of mood or pain relief in the MPAC. MPAC rating of pain significantly correlated with fatigue and confusion as measured by the POMS and rating of pain relief was significantly inversely correlated with POMS measures of tension and confusion. The MPAC mood scale correlated significantly with all of the psychological measures on the POMS and with the total POMS score.

iv. Responsiveness (Any information? Has the scale ever been used as an outcome measure? If so, in what populations?)

Similar to most pain scales, the MPAC was designed to provide a manageable means of measuring both pain intensity and pain relief. MPAC was used to measure pain as a component of a quality of life outcome measure in a cancer clinical trial (Ingham 1996).

v. Interpretability (What populations has it been applied to? Is the score translated into a clinically relevant event? Does the score predict outcome events?)

The MPAC has been used in multiple studies of cancer patients, especially as part of quality of life assessments in clinical trials (Ingham 1996, Kornblith 1995, Seidman 1995). However, the instrument has not been used for assessment in a terminally ill population.

vi. Burden (Any information on cost or time to administer? Does the instrument impact on the respondent? How long does a survey take to complete? Response rates? Any problems with missing data?)

The MPAC can be completed in less than 20 seconds by experienced patients. Shannon et al (1995) found that about half of advanced cancer patients were able to complete the MPAC.

vii. Alternative forms (What are the modes of administration? Alternatives? If alternative exist, provide what is known for each of the above categories)

The MPAC is a self-administered card.

viii. Cultural and Language Adaptations (Any information?)

No information available.

d. Edmonton Symptom Assessment System (Bruera 1991)

The Edmonton Symptom Assessment System (ESAS) consists of nine 100mm visual analog scales for pain, activity, nausea, depression, anxiety, drowsiness, appetite, shortness of breath and sensation of well-being. The instrument was designed for symptom assessment twice a day. Once collected, information is transferred to a symptom assessment graph that records the assessments of up to 21 days on one page.

ii. Reliability (Did they address internal consistency? Did they address reproducibility?)

No information available.

iii. Validity (How did they address content related validity? Any information on construct related validity? Any information on criterion validity?)

No information available.

iv. Responsiveness (Any information? Has the scale ever been used as an outcome measure? If so, in what populations?)

ESAS scores are obtained twice a day plotted, providing a graphical representation that would indicate responsiveness.

v. Interpretability (What populations has it been applied to? Is the score translated into a clinically relevant event? Does the score predict outcome events?)

The ESAS was developed for terminally ill patients in a palliative care setting.

vi. Burden (Any information on cost or time to administer? Does the instrument impact on the respondent? How long does a survey take to complete? Response rates? Any problems with missing data?)

When studying 101 patients in a palliative care unit, Bruera et al found that no patient permanently refused to complete the form. When patients were unable, nurses would either assist the patient in completing the form or fill it out themselves, or a relative would complete the form.

vii. Alternative forms (What are the modes of administration? Alternatives? If alternative exist, provide what is known for each of the above categories)

The instrument can be completed by a patient, or if he is unable, completed by a nurse or relative.

viii. Cultural and Language Adaptations (Any information?)

No information available.

e. Wisconsin Brief Pain Questionnaire (Daut 1983)

The Wisconsin Brief Pain Questionnaire (BPQ) is a self-administered instrument that assesses pain history, worse pain, usual pain and pain now. The BPQ uses a human figure that is shaded to indicate pain, rating of pain intensity, relief from medication, and ratings of pain interference. A 0-4 scale is used (0=not at all, 1=a little bit, 2=moderately, 3=quite a bit, 4=extremely).

ii. Reliability (Did they address internal consistency? Did they address reproducibility?)

Test-retest revealed higher reliability when the interval was short (r=.93 for worst pain, r=.78 for usual pain, r=.59 pain now) than long (r=.34 for worst pain, r=.24 for usual pain, r=.22 for pain now). This is logical as real changes in pain would be expected over a longer time period. The consistency of responding to the pain history items was assessed on the long-term follow-up sample. Percentage agreement for initial pain was 76%, 81% for pain ever, and 67% for pain in the last month.

iii. Validity (How did they address content related validity? Any information on construct related validity? Any information on criterion validity?)

Correspondence between pain medication use and overall pain ratings revealed that the percentage of patients taking medication increased significantly with higher pain ratings (narcotic P .002, non-narcotic P .002). Correlation between usual pain ratings and ratings of pain interference was high (r=.624, P .001). As would be expected, more intense pain correlates more strongly with interference than usual levels of pain. Measures of average pain, worse pain and pain now are significantly related to each other but not identical.

iv. Responsiveness (Any information? Has the scale ever been used as an outcome measure? If so, in what populations?)

The BPQ was used as an outcome measure in a study of pain in ambulatory HIV patients (McCormack 1993). The study was able to show that pain control in this population is inadequate with usual intervention.

v. Interpretability (What populations has it been applied too? Is the score translated into a clinically relevant event? Does the score predict outcome events?)

The BPQ has been used in cancer, rheumatoid arthritis and HIV patients.

vi. Burden (Any information on cost or time to administer? Does the instrument impact on the respondent? How long does a survey take to complete? Response rates? Any problems with missing data?)

In a study of 1234 patients, Daut et al (1983) had a refusal rate of about 7%, and about 6% were too ill to respond. Most patients were able to fill out the questionnaire without assistance.

vii. Alternative forms (What are the modes of administration? Alternatives? If alternative exist, provide what is known for each of the above categories)

The BPQ is a self-administered instrument.

viii. Cultural and Language Adaptations (Any information?)

No information reported.

III. Recommended instruments for Toolkit

In reviewing instruments for pain and physical symptoms, I have chosen three pain specific measures and two measures of general symptoms. As a pain scale, the McGill Pain Questionnaire is well-used, manageable, and responsive to intervention. Sufficient studies have been conducted with terminally ill patients to provide some benchmark information. The Edmonton Symptom Assessment Scale is important to consider in this endeavor because it was designed for use in a terminally ill population. Collecting data twice a day and plotting this data on the assessment graph provides extremely valuable information. However, it may be too burdensome for many care settings to administer the questionnaire twice a day and graph the results. For the purpose of the Toolkit, I will not recommend ESAS because of the burden associated with the measure. However, for any institution that endeavors to conduct a longitudinal assessment to examine change over time, the assessment graph is an important tool.

For inclusion in the Toolkit, I am recommending the Memorial Symptom Assessment Scale. The MSAS is brief enough the be manageable and has been shown to be reliable and valid. Additionally, the MSAS assesses both physical and emotional symptoms and has also been recommended for assessment of emotional symptoms in this review. Limitations to the MSAS have been discussed in the review of instruments for emotional symptoms.

V. Priorities for future research

i. We need more published descriptions of the dying experience, especially in patients with diagnoses other then cancer. More research would provide a better understanding of the symptoms that are most prevalent at the end of life, the ‘usual’ severity of these symptoms, and the degree to which these symptoms are bothersome to patients.

ii. More studies are needed to test the responsiveness of measures of pain and physical symptoms to interventions to manage these symptoms.

iii. Efforts should be taken to ensure that data on symptoms are collected and presented to providers in a clinically meaningful way.

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Section prepared by Kristen Landrum.

Updated by Lisa Welch 8/30/00.