Original Article The Credibility of Self-reported Pain Among Institutional Older People with Different Degrees of Cognitive Function in Taiwan ---
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From the *School of Nursing, Mackay Medical College, Taiwan, ROC; † Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taiwan, ROC. Address correspondence to Li-Chan Lin, RN, PhD, Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taiwan, ROC. E-mail: lichan2009@ gmail.com Received December 12, 2013; Revised May 29, 2014; Accepted May 29, 2014. This work was supported by the Ministry of Science and Technology (NSC 99-2314-B-039-019) of Taiwan. The authors state they have no conflicts of interest to declare. 1524-9042/$36.00 Ó 2015 by the American Society for Pain Management Nursing http://dx.doi.org/10.1016/ j.pmn.2014.05.010
Yi-Heng Chen, RN, MSN, PhD,* and Li-Chan Lin, RN, PhD†
ABSTRACT:
Despite many studies conducted to validate the self-reported pain of vulnerable patients, it is unclear at what level of cognitive impairment individuals still can provide reliable information. The aims of this study were to examine the reliability and validity of self-reported pain by degree of patients’ cognitive function and to determine important predictors of self-reported pain in cognitively impaired residents in long-term care facilities. The 414 participants were divided into four groups according to their scores on the Mini-Mental State Examination (nonimpaired, mild, moderate, and severe cognitive impairment). Multifaceted measures were performed to validate residents’ pain reports. Self-reported pain and pain behaviors were measured using the Verbal Descriptor Scale and the Doloplus-2 scale. Known correlates of pain including functional disability, depression, and agitation were compared, using the Barthel Index, the Cornell scale, and the CohenMansfield Agitation Inventory. Intra-rater and interrater reliability were generally acceptable in groups with no impairment to moderate cognitive impairment. The relationships between residents’ selfreported pain and the known correlates of pain were almost all significant across groups with no impairment to moderate cognitive impairment, but fewer were significant in the severely impaired group. Regression analyses revealed that multiple pain indicators together were significantly better predictors of self-reported pain in moderately and severely impaired residents. The findings from this study support residents with cognitive impairment up to a moderate level can report pain reliably. However, for those in later stages of dementia, a multifaceted approach is suggested to help in pain recognition. Ó 2015 by the American Society for Pain Management Nursing
Pain Management Nursing, Vol 16, No 3 (June), 2015: pp 163-172
164
Chen and Lin
BACKGROUND Although the Joint Commission has promoted ‘‘Pain– the 5th Vital Sign’’ to emphasize the importance of pain assessment in relation to the standard four vital signs, it is still a common but neglected problem in long-term care facilities (Hadjistavropoulos et al., 2007; Lanser & Gesell, 2001). A label of dementia in residents may greatly increase the risk for inadequate pain assessment and treatment (Nygaard & Jarland, 2005). Due to diminished cognitive function and communication abilities in residents with dementia, clinicians often are unsure of how to use self-report tools of pain in this group, and they tend not to believe these residents’ self-reports of pain (Cook, Niven, & Downs, 1999). Unresolved pain not only affect residents’ physical and psychological well-being, and also can lead to increased care demands in institutionalized care settings (Kunik et al., 2010). A multifaceted approach combining self-report, observational assessment, proxy report, and multiple pain indicators has been recommended to improve the accuracy of pain assessment among vulnerable older people with limited ability to self-report pain (Herr, Coyne, McCaffery, Manworren, & Merkel, 2011; Snow et al., 2004). Thus, the Hierarchy of Pain Assessment Techniques (HAT) was developed to use the following in sequence to recognize residents’ pain: elicitation of self-report data, identification of pathological pain conditions, observation of behavioral cues, use of surrogate reports, evaluation of pain-related negative affect and agitation, and response to analgesic trials (Herr et al., 2011). However, pain is a highly subjective and personal experience, so selfreport remains the gold standard for pain assessment (Shega et al., 2010). To determine of the level of cognitive impairment at which residents still can provide reliable selfreported pain, several researchers have suggested using multiple pain criteria in those with dementia. Snow et al. (2004) developed the Know Correlates Validity Model to encourage further studies to adopt empirical correlates of pain such as pain history, pain-related conditions, functional disability, depression, negative affect, and agitation to validate cognitively impaired residents’ self-reported pain. Additionally, based on Snow et al.’s model and HAT, Ersek, Pollissar, and Neradilek (2011) developed a conceptual model highlighting multidimensional pain indicators covering painful conditions, behavioral cues, known correlates, and surrogate reports to predict the intensity of residents’ self-reported pain. In the past decade, despite the many studies to validate cognitively impaired residents’ self-reported
pain, results are mixed. Some studies support the idea that older individuals with up to a moderate level of cognitive impairment are capable of using a pain self-report scale reliably and validly (Closs, Barr, Briggs, Cash, & Seers, 2004; Shega et al., 2010). However, others suggest that even the most severely impaired older people are capable of responding accurately to an assessment tool when the appropriate scales are used (Manz, Mosier, NusserGerlach, Bergstrom, & Agrawal, 2000; Pautex et al., 2006). Moreover, still others assert that, regardless of the level of cognitive impairment, older individuals with dementia are too impaired to quantify pain experiences accurately (Leong, Chong, & Gibson, 2006; Wynne, Ling, & Remsburg, 2000). These disparate results may be attributable to differences in survey methods. First, although previous researchers have asserted that, given appropriate time and assistance, residents with severe dementia can provide consistent and reliable self-reported pain information, most studies included relatively few of these individuals (Pautex et al., 2005; Shega et al., 2010). This makes the reliability of self-reported pain difficult to establish in this population. Second, some studies used the response rate as the key indicator to determine the level of cognitive impairment at which residents can selfreport pain accurately (Closs et al., 2004). However, being able to complete a tool does not imply giving a valid report, as both the ability of people with dementia to complete the self-reported scale and their ability to understand it should be evaluated simultaneously. Third, most studies did not report whether standardized instructions were provided before the administration of self-reported scales. Differences in this procedure may lead to uncertainty in pain intensity assessment and bias the research results (Fisher, Burgio, Thorn, & Hardin, 2006; Pautex et al., 2006). More methodologically sound studies are required. The purpose of this study was to use a multifaceted approach to investigate the reliability and validity of self-reported pain across groups with different degrees of cognitive function as assessed by the MiniMental State Examination (MMSE; i.e., nonimpaired, mild, moderate, and severe cognitive impairment) and to determine the important predictors of selfreported pain intensity in these four cognition groups. Specific aims were as follows: 1. Evaluate the interrater and intra-rater reliability of selfreported pain intensity across groups with different degrees of cognitive function. 2. Evaluate the accuracy of self-reported pain intensity across groups with different degrees of cognitive function by examining the systematic bias of resident-proxy pairs.
Credibility of Self-reported Pain
3. Evaluate concurrent validity by examining the association between self-reported pain intensity and reference variables (including surrogate reports, pain behaviors, and known correlates of pain such as pain history, functional disability, depression, and agitation) across groups with different degrees of cognitive function. 4. Investigate whether these reference variables may predict the intensity of present pain in residents with different degrees of cognitive function.
METHODS This was a cross-sectional study of institutionalized residents with and without dementia carried out from January 2010 to August 2012 in Taiwan. The research was approved by the ethical committee. After assessing participants’ understanding or ability to consent for this study, researchers sought their assent to participate in the presence of a witness. For residents with dementia who could not consent on their own behalf, consent from a legally authorized representative was obtained. Sample The study included almost all dementia special care units located in central, northern, and eastern Taiwan. Cognitively impaired residents with a medical diagnosis of dementia were recruited from 12 dementia special care units. To form a comparison group, a convenience sample of cognitively intact residents, as judged by doctors, was recruited from two major long-term care facilities located in central Taiwan. The inclusive criteria for all participants were as follows: age older than 65 years, able to use the Verbal Descriptor Scale (VDS) to rate present pain within 2 minutes using self-report or unambiguous body language (i.e., pointing to scale), no severe impairments in hearing or sight, and residence at the facility for at least 1 month. After obtaining permission to perform the study in 14 institutions, potential participants were contacted by research assistants (RAs) to confirm study eligibility. Of 665 residents surveyed for participation, 436 (65%) met the inclusion criteria. Of these, 22 were excluded because of death, refusal to participate, return to home, or relocation to another facility. Formal caregivers selected were registered nurses (RNs) in charge of the residents studied who had worked at their institutions for at least 1 month. Measures Participants were divided into four groups according to cognitive ability, assessed by the MMSE. For present levels of pain, the VDS was used to measure selfreported and surrogate-reported pain, in which the
165
latter was assessed by the RN. The Doloplus-2 scale was used to measure pain behaviors. Additionally, based on the model by Snow et al. (2004), known correlates including pain history, functional disability, depression, and agitation were used as evidence of criterion validity of residents’ self-reported pain. Pain history was collected by a datasheet, but the other variables were measured using the Barthel Index, the Cornell Scale for Depression in Dementia (CSDD), and the Cohen-Mansfield Agitation Inventory (CMAI). Measuring Severity of cognitive Impairment. The MMSE is an 11-item, 30-point instrument measuring cognitive ability (Folstein, Folstein, & McHugh, 1975). Patients scoring
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From the *School of Nursing, Mackay Medical College, Taiwan, ROC; † Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taiwan, ROC. Address correspondence to Li-Chan Lin, RN, PhD, Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taiwan, ROC. E-mail: lichan2009@ gmail.com Received December 12, 2013; Revised May 29, 2014; Accepted May 29, 2014. This work was supported by the Ministry of Science and Technology (NSC 99-2314-B-039-019) of Taiwan. The authors state they have no conflicts of interest to declare. 1524-9042/$36.00 Ó 2015 by the American Society for Pain Management Nursing http://dx.doi.org/10.1016/ j.pmn.2014.05.010
Yi-Heng Chen, RN, MSN, PhD,* and Li-Chan Lin, RN, PhD†
ABSTRACT:
Despite many studies conducted to validate the self-reported pain of vulnerable patients, it is unclear at what level of cognitive impairment individuals still can provide reliable information. The aims of this study were to examine the reliability and validity of self-reported pain by degree of patients’ cognitive function and to determine important predictors of self-reported pain in cognitively impaired residents in long-term care facilities. The 414 participants were divided into four groups according to their scores on the Mini-Mental State Examination (nonimpaired, mild, moderate, and severe cognitive impairment). Multifaceted measures were performed to validate residents’ pain reports. Self-reported pain and pain behaviors were measured using the Verbal Descriptor Scale and the Doloplus-2 scale. Known correlates of pain including functional disability, depression, and agitation were compared, using the Barthel Index, the Cornell scale, and the CohenMansfield Agitation Inventory. Intra-rater and interrater reliability were generally acceptable in groups with no impairment to moderate cognitive impairment. The relationships between residents’ selfreported pain and the known correlates of pain were almost all significant across groups with no impairment to moderate cognitive impairment, but fewer were significant in the severely impaired group. Regression analyses revealed that multiple pain indicators together were significantly better predictors of self-reported pain in moderately and severely impaired residents. The findings from this study support residents with cognitive impairment up to a moderate level can report pain reliably. However, for those in later stages of dementia, a multifaceted approach is suggested to help in pain recognition. Ó 2015 by the American Society for Pain Management Nursing
Pain Management Nursing, Vol 16, No 3 (June), 2015: pp 163-172
164
Chen and Lin
BACKGROUND Although the Joint Commission has promoted ‘‘Pain– the 5th Vital Sign’’ to emphasize the importance of pain assessment in relation to the standard four vital signs, it is still a common but neglected problem in long-term care facilities (Hadjistavropoulos et al., 2007; Lanser & Gesell, 2001). A label of dementia in residents may greatly increase the risk for inadequate pain assessment and treatment (Nygaard & Jarland, 2005). Due to diminished cognitive function and communication abilities in residents with dementia, clinicians often are unsure of how to use self-report tools of pain in this group, and they tend not to believe these residents’ self-reports of pain (Cook, Niven, & Downs, 1999). Unresolved pain not only affect residents’ physical and psychological well-being, and also can lead to increased care demands in institutionalized care settings (Kunik et al., 2010). A multifaceted approach combining self-report, observational assessment, proxy report, and multiple pain indicators has been recommended to improve the accuracy of pain assessment among vulnerable older people with limited ability to self-report pain (Herr, Coyne, McCaffery, Manworren, & Merkel, 2011; Snow et al., 2004). Thus, the Hierarchy of Pain Assessment Techniques (HAT) was developed to use the following in sequence to recognize residents’ pain: elicitation of self-report data, identification of pathological pain conditions, observation of behavioral cues, use of surrogate reports, evaluation of pain-related negative affect and agitation, and response to analgesic trials (Herr et al., 2011). However, pain is a highly subjective and personal experience, so selfreport remains the gold standard for pain assessment (Shega et al., 2010). To determine of the level of cognitive impairment at which residents still can provide reliable selfreported pain, several researchers have suggested using multiple pain criteria in those with dementia. Snow et al. (2004) developed the Know Correlates Validity Model to encourage further studies to adopt empirical correlates of pain such as pain history, pain-related conditions, functional disability, depression, negative affect, and agitation to validate cognitively impaired residents’ self-reported pain. Additionally, based on Snow et al.’s model and HAT, Ersek, Pollissar, and Neradilek (2011) developed a conceptual model highlighting multidimensional pain indicators covering painful conditions, behavioral cues, known correlates, and surrogate reports to predict the intensity of residents’ self-reported pain. In the past decade, despite the many studies to validate cognitively impaired residents’ self-reported
pain, results are mixed. Some studies support the idea that older individuals with up to a moderate level of cognitive impairment are capable of using a pain self-report scale reliably and validly (Closs, Barr, Briggs, Cash, & Seers, 2004; Shega et al., 2010). However, others suggest that even the most severely impaired older people are capable of responding accurately to an assessment tool when the appropriate scales are used (Manz, Mosier, NusserGerlach, Bergstrom, & Agrawal, 2000; Pautex et al., 2006). Moreover, still others assert that, regardless of the level of cognitive impairment, older individuals with dementia are too impaired to quantify pain experiences accurately (Leong, Chong, & Gibson, 2006; Wynne, Ling, & Remsburg, 2000). These disparate results may be attributable to differences in survey methods. First, although previous researchers have asserted that, given appropriate time and assistance, residents with severe dementia can provide consistent and reliable self-reported pain information, most studies included relatively few of these individuals (Pautex et al., 2005; Shega et al., 2010). This makes the reliability of self-reported pain difficult to establish in this population. Second, some studies used the response rate as the key indicator to determine the level of cognitive impairment at which residents can selfreport pain accurately (Closs et al., 2004). However, being able to complete a tool does not imply giving a valid report, as both the ability of people with dementia to complete the self-reported scale and their ability to understand it should be evaluated simultaneously. Third, most studies did not report whether standardized instructions were provided before the administration of self-reported scales. Differences in this procedure may lead to uncertainty in pain intensity assessment and bias the research results (Fisher, Burgio, Thorn, & Hardin, 2006; Pautex et al., 2006). More methodologically sound studies are required. The purpose of this study was to use a multifaceted approach to investigate the reliability and validity of self-reported pain across groups with different degrees of cognitive function as assessed by the MiniMental State Examination (MMSE; i.e., nonimpaired, mild, moderate, and severe cognitive impairment) and to determine the important predictors of selfreported pain intensity in these four cognition groups. Specific aims were as follows: 1. Evaluate the interrater and intra-rater reliability of selfreported pain intensity across groups with different degrees of cognitive function. 2. Evaluate the accuracy of self-reported pain intensity across groups with different degrees of cognitive function by examining the systematic bias of resident-proxy pairs.
Credibility of Self-reported Pain
3. Evaluate concurrent validity by examining the association between self-reported pain intensity and reference variables (including surrogate reports, pain behaviors, and known correlates of pain such as pain history, functional disability, depression, and agitation) across groups with different degrees of cognitive function. 4. Investigate whether these reference variables may predict the intensity of present pain in residents with different degrees of cognitive function.
METHODS This was a cross-sectional study of institutionalized residents with and without dementia carried out from January 2010 to August 2012 in Taiwan. The research was approved by the ethical committee. After assessing participants’ understanding or ability to consent for this study, researchers sought their assent to participate in the presence of a witness. For residents with dementia who could not consent on their own behalf, consent from a legally authorized representative was obtained. Sample The study included almost all dementia special care units located in central, northern, and eastern Taiwan. Cognitively impaired residents with a medical diagnosis of dementia were recruited from 12 dementia special care units. To form a comparison group, a convenience sample of cognitively intact residents, as judged by doctors, was recruited from two major long-term care facilities located in central Taiwan. The inclusive criteria for all participants were as follows: age older than 65 years, able to use the Verbal Descriptor Scale (VDS) to rate present pain within 2 minutes using self-report or unambiguous body language (i.e., pointing to scale), no severe impairments in hearing or sight, and residence at the facility for at least 1 month. After obtaining permission to perform the study in 14 institutions, potential participants were contacted by research assistants (RAs) to confirm study eligibility. Of 665 residents surveyed for participation, 436 (65%) met the inclusion criteria. Of these, 22 were excluded because of death, refusal to participate, return to home, or relocation to another facility. Formal caregivers selected were registered nurses (RNs) in charge of the residents studied who had worked at their institutions for at least 1 month. Measures Participants were divided into four groups according to cognitive ability, assessed by the MMSE. For present levels of pain, the VDS was used to measure selfreported and surrogate-reported pain, in which the
165
latter was assessed by the RN. The Doloplus-2 scale was used to measure pain behaviors. Additionally, based on the model by Snow et al. (2004), known correlates including pain history, functional disability, depression, and agitation were used as evidence of criterion validity of residents’ self-reported pain. Pain history was collected by a datasheet, but the other variables were measured using the Barthel Index, the Cornell Scale for Depression in Dementia (CSDD), and the Cohen-Mansfield Agitation Inventory (CMAI). Measuring Severity of cognitive Impairment. The MMSE is an 11-item, 30-point instrument measuring cognitive ability (Folstein, Folstein, & McHugh, 1975). Patients scoring
