University of Groningen
Physical health in adults with severe or profound intellectual and motor disabilities
van Timmeren, Everdina Aafke
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Chapter 4
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Intellectual disability and ill health: A review of the evidence (pp. 78-87).
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Van de Louw, J., Vorstenbosch, R., Vinck, L., Penning, C., & Evenhuis, H. (2009).
Prevalence of hypertension in adults with intellectual disability in the Netherlands.
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Van Timmeren, E. A., van der Putten, A. A. J., van Schrojenstein Lantman-de Valk, H. M. J., van der Schans, C. P., & Waninge, A. (2016). Prevalence of reported physical health problems in people with severe or profound intellectual and motor disabilities: A cross-sectional study of medical records and care plans. Journal of
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3148.2005.00244.x
Chapter
5
Identifying physical health problems in
adults with severe or profound intellectual
and motor disabilities: an inventory of
measurement methods and their reliability
and validity
E.A. van Timmeren A.A.J. van der Putten C.P. van der Schans A. Waninge
H.M.J. van Schrojenstein Lantman-de Valk
Chapter 5 ABSTRACT
Background People with severe or profound intellectual and motor disabilities (SPIMD)
are at risk for non-recognition of physical health problems. Early identification is important however, it is unknown which measurements are used and if they are reliable and valid. The aim was to determine the reliability and validity of measurement methods used in current practice for identifying physical health problems in adults with SPIMD.
Methods Measurement methods were inventoried via a web-based survey. Intellectual
disability (ID) physicians working with adults with SPIMD were asked to fill in the survey. A literature review was conducted to determine the reliability and validity of the reported standardized measurement methods in the survey.
Results Reported measurement methods were: recognizing health-related change,
observing symptoms of a health problem and the use of nine standardized methods: Bristol Stool Form Scale, ear/rectal thermometer, ‘Sinaleringslijst Verslikken’ (a Dutch Screening tool for Dysphagia), manual/automated sphygmomanometer, pulse oximeter, Bladderscan, and Barnes Akathisia Rating Scale. In the literature review no studies were found regarding reliability and validity of these standardized measurement methods in adults with ID/SPIMD. In the non-ID population, only two measurement methods were rated positively: the Bladderscan showed sufficient intra-, interrater, and test-retest reliability, measurement error, construct and criterion validity; and the rectal thermometer showed a sufficient measurement error.
Conclusion Commonly used standardized measurement methods to identify physical
health problems appear not to have been properly evaluated regarding reliability and validity within this specific population. There is a strong need to establish firm evidence on reliability and validity regarding the measurement methods used in current practice for identifying physical health problems.
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods INTRODUCTION
Individuals with severe or profound intellectual and motor disabilities (SPIMD) experience difficulties in communicating with others about their health needs. Due to the severe or profound intellectual, sensory, and motor disabilities as well as minimal verbal language skills, they are reliant on health management that is performed by others (Nakken & Vlaskamp, 2007). Instead of verbalizing the presence of a physical health problem, they often present a change in mood or behaviour. Daily caregivers may not recognize this as a sign of a physical health problem (Carr & Owen-Deschryver, 2007; Poppes, van der Putten, & Vlaskamp, 2010) especially when clinical signs are less obvious and difficult to identify.
Unidentified physical health problems may lead to pain, feeling ill, distress, and challenging behaviours (Charlot et al., 2011; Carr & Owen-DeSchryrer, 2007), may contribute to the development of secondary health complications, and reduce life expectancy (Cooper, Melville, & Morrison, 2004; McCarthy & O'Hara, 2011). For example, unnoticed swallowing difficulties can lead to aspiration and respiratory infections that may be life-threatening (Chadwick & Jolliffe, 2009). Death due to respiratory infections is the most common cause of death for people with SPIMD and is considered to be
potentially avoidable (Heslop et al., 2014; Hosking et al., 2016; Trollor, Srasuebkul, Xu, & Howlett, 2017).
People with SPIMD require support in almost every aspect of their daily life (Nakken & Vlaskamp, 2007). They rely upon daily caregivers to be their health advocates. Considering the serious consequences of physical health problems in this population, early identification of relevant physical signs is important (Kerr et al., 2003; Robertson, Hatton, Emerson, & Baines, 2014). There are several studies that report the need for health screening for people with intellectual disabilities (Robertson et al., 2014). In addition, the need for training regarding proactive monitoring for changes in health status for daily caregivers of people with ID is recognized (Northway, Jenkins, & Holland-Hart, 2017), however, there is a lack of information of the way that these caregivers identify signs and symptoms of physical health problems.
To accurately identify a physical health problem, the measurement method needs to be reliable and valid (Hawkins, 2005). Reliability is the degree to which consistent results would be obtained in identical situations on different occasions. The validity of a measurement method is related to how close the results are to the true value being measured (Stoker, 2008). Unreliable and/or invalid measurements may lead to misguided decision-making and may result in inadequate treatment (Stoker, 2008). Inadequate treatment of physical health problems in people with SPIMD may lead to exacerbation of these problems and complications, resulting in considerable negative health consequences (Cooper et al., 2015; Robertson et al., 2014).
Identifying physical health problems is complex in people with SPIMD. The measuring methods must take into account the complex difficulties associated with the impairments in these individuals. Their intellectual, physical, and sensory disabilities can impede some examinations (Nakken & Vlaskamp, 2007). Measurements that require a
Chapter 5 ABSTRACT
Background People with severe or profound intellectual and motor disabilities (SPIMD)
are at risk for non-recognition of physical health problems. Early identification is important however, it is unknown which measurements are used and if they are reliable and valid. The aim was to determine the reliability and validity of measurement methods used in current practice for identifying physical health problems in adults with SPIMD.
Methods Measurement methods were inventoried via a web-based survey. Intellectual
disability (ID) physicians working with adults with SPIMD were asked to fill in the survey. A literature review was conducted to determine the reliability and validity of the reported standardized measurement methods in the survey.
Results Reported measurement methods were: recognizing health-related change,
observing symptoms of a health problem and the use of nine standardized methods: Bristol Stool Form Scale, ear/rectal thermometer, ‘Sinaleringslijst Verslikken’ (a Dutch Screening tool for Dysphagia), manual/automated sphygmomanometer, pulse oximeter, Bladderscan, and Barnes Akathisia Rating Scale. In the literature review no studies were found regarding reliability and validity of these standardized measurement methods in adults with ID/SPIMD. In the non-ID population, only two measurement methods were rated positively: the Bladderscan showed sufficient intra-, interrater, and test-retest reliability, measurement error, construct and criterion validity; and the rectal thermometer showed a sufficient measurement error.
Conclusion Commonly used standardized measurement methods to identify physical
health problems appear not to have been properly evaluated regarding reliability and validity within this specific population. There is a strong need to establish firm evidence on reliability and validity regarding the measurement methods used in current practice for identifying physical health problems.
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods INTRODUCTION
Individuals with severe or profound intellectual and motor disabilities (SPIMD) experience difficulties in communicating with others about their health needs. Due to the severe or profound intellectual, sensory, and motor disabilities as well as minimal verbal language skills, they are reliant on health management that is performed by others (Nakken & Vlaskamp, 2007). Instead of verbalizing the presence of a physical health problem, they often present a change in mood or behaviour. Daily caregivers may not recognize this as a sign of a physical health problem (Carr & Owen-Deschryver, 2007; Poppes, van der Putten, & Vlaskamp, 2010) especially when clinical signs are less obvious and difficult to identify.
Unidentified physical health problems may lead to pain, feeling ill, distress, and challenging behaviours (Charlot et al., 2011; Carr & Owen-DeSchryrer, 2007), may contribute to the development of secondary health complications, and reduce life expectancy (Cooper, Melville, & Morrison, 2004; McCarthy & O'Hara, 2011). For example, unnoticed swallowing difficulties can lead to aspiration and respiratory infections that may be life-threatening (Chadwick & Jolliffe, 2009). Death due to respiratory infections is the most common cause of death for people with SPIMD and is considered to be
potentially avoidable (Heslop et al., 2014; Hosking et al., 2016; Trollor, Srasuebkul, Xu, & Howlett, 2017).
People with SPIMD require support in almost every aspect of their daily life (Nakken & Vlaskamp, 2007). They rely upon daily caregivers to be their health advocates. Considering the serious consequences of physical health problems in this population, early identification of relevant physical signs is important (Kerr et al., 2003; Robertson, Hatton, Emerson, & Baines, 2014). There are several studies that report the need for health screening for people with intellectual disabilities (Robertson et al., 2014). In addition, the need for training regarding proactive monitoring for changes in health status for daily caregivers of people with ID is recognized (Northway, Jenkins, & Holland-Hart, 2017), however, there is a lack of information of the way that these caregivers identify signs and symptoms of physical health problems.
To accurately identify a physical health problem, the measurement method needs to be reliable and valid (Hawkins, 2005). Reliability is the degree to which consistent results would be obtained in identical situations on different occasions. The validity of a measurement method is related to how close the results are to the true value being measured (Stoker, 2008). Unreliable and/or invalid measurements may lead to misguided decision-making and may result in inadequate treatment (Stoker, 2008). Inadequate treatment of physical health problems in people with SPIMD may lead to exacerbation of these problems and complications, resulting in considerable negative health consequences (Cooper et al., 2015; Robertson et al., 2014).
Identifying physical health problems is complex in people with SPIMD. The measuring methods must take into account the complex difficulties associated with the impairments in these individuals. Their intellectual, physical, and sensory disabilities can impede some examinations (Nakken & Vlaskamp, 2007). Measurements that require a
Chapter 5
certain level of physical abilities or self-report questionnaires are not feasible for people with SPIMD. The limited verbal communication skills, impaired mobility, physical
disabilities, and poor vision and hearing may hinder the detection of health problems with potential serious consequences. For example, spasticity or contractures in upper limbs can hinder blood pressure measurements (van de Louw, Vorstenbosch, Vinck, Penning, & Evenhuis, 2009). However, it is currently unknown which methods are used in practice and, in addition, whether they are reliable and valid.
The aim of this study is to inventory the measurement methods that are used in current practice for identifying physical health problems in adults with SPIMD and to determine the reliability and validity of these measurement methods.
METHODS Study design
This study was conducted in two parts: an inventory of measurement methods that are used in current practice and a literature search and analysis of the reliability and validity of the measurement methods.
Inventory of the measurement methods
We developed a web-based survey (Enalyzer) in order to inventory the measurement methods that are used in practice for identifying physical health problems in people with SPIMD. Based on an earlier cross-sectional study on the prevalence of reported physical health problems in these adults (van Timmeren, van der Putten, van Schrojenstein Lantman-de Valk, van der Schans, & Waninge,, 2016), we selected 15 physical health problems with less obvious signs and symptoms because they are easily overlooked: constipation, epilepsy, pneumonia, reflux, dysphagia, urinary tract infection, hypertension, osteoporosis, arthrosis, cardiac disease, COPD/Asthma, retention of urine, hypothermia, parkinsonism, and spasticity. We did not include physical health problems with visible or recognizable symptoms such as scoliosis and eczema. The online survey was conducted between May and June 2016.
Participants
Daily caregivers identify and monitor health problems and subsequently report these to a physician. In the Netherlands, ID physicians are most often responsible for the medical support for adults with SPIMD. Therefore, members of the Dutch Society of Physicians working with People with ID (NVAVG) who are experienced in working with adults with SPIMD were asked to fill in the survey. At the time of the survey (2016), there were approximately 220 ID physicians working in various facilities such as central residential settings, community-based homes, supported living, day-activity centers and outpatient facilities. The survey was completed by 40 ID physicians. Most respondents were 45 years old or younger (60%). The majority of respondents were female (87%) who had more than five years work experience with adults with SPIMD (72.5%). The work locations of the respondents were dispersed throughout different regions of the Netherlands.
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods
Data collection
The survey consisted of one question regarding each of the 15 physical health problems, specifically, ´What measurement methods are being used in your facility to identify ………... in adults with SPIMD?’ The multiple-choice options were based on interviews with physicians of four residential facilities for people with ID. In addition to the multiple-choice options, we included an "other" option with a free-form text field so that respondents could fill in any other measurement methods that were not listed.
The link to the online survey and information regarding the study were e-mailed to members of the NVAVG by the membership administrators. Potential respondents could access the survey questionnaire by clicking the URL hyperlink contained in the e-mail. Respondents could reply anonymously. To help maximize the response rates, the distribution of the survey was preceded by advertising on the website of the NVAVG. We could not target reminders to individuals who had not responded as replies were anonymous. One general reminder e-mail was sent by the NVAVG asking those members who had not yet completed the survey to consider doing so.
Two co-authors (A.W. and H.M.J.v.S.L.d.V.) piloted the questionnaire; the amount of time estimated for completion of the survey was found to be approximately 30 minutes.
Data analyses
Descriptive statistics such as percentages (%) and frequencies (N) were generated to report the measurement methods used in current practice for each of the 15 health problems. We summarized the responses to the survey by type and frequency. For the "other" option with a free-form text field, data were summarized and grouped into themes per physical health problem such as observing health related change and observing and reporting of specific signs and symptoms of a health problem.
Reliability and validity of the standardized measurement methods
To determine the reliability and validity of the reported standardized measurement methods in the survey, we performed a literature review.
Data collection
An electronic search of MedLine/PubMed, the Cochrane library, PsychINFO, Embase, and CINAHL was performed in November 2017. The following keywords were utilized:
[Intellectual disability] AND [psychometric properties] AND [the name of the measurement method].
The timeframe for the literature search was the last ten years (between January 2007 and November 2017). Criteria for inclusion were a full-text article; published in English; peer reviewed; population of interest was people with intellectual disabilities; with a focus on the reliability and validity of the measurement method of interest. The exclusion criteria were conference abstract; case report; narrative review; descriptive studies; letter to the editor; and gray literature.
Chapter 5
certain level of physical abilities or self-report questionnaires are not feasible for people with SPIMD. The limited verbal communication skills, impaired mobility, physical
disabilities, and poor vision and hearing may hinder the detection of health problems with potential serious consequences. For example, spasticity or contractures in upper limbs can hinder blood pressure measurements (van de Louw, Vorstenbosch, Vinck, Penning, & Evenhuis, 2009). However, it is currently unknown which methods are used in practice and, in addition, whether they are reliable and valid.
The aim of this study is to inventory the measurement methods that are used in current practice for identifying physical health problems in adults with SPIMD and to determine the reliability and validity of these measurement methods.
METHODS Study design
This study was conducted in two parts: an inventory of measurement methods that are used in current practice and a literature search and analysis of the reliability and validity of the measurement methods.
Inventory of the measurement methods
We developed a web-based survey (Enalyzer) in order to inventory the measurement methods that are used in practice for identifying physical health problems in people with SPIMD. Based on an earlier cross-sectional study on the prevalence of reported physical health problems in these adults (van Timmeren, van der Putten, van Schrojenstein Lantman-de Valk, van der Schans, & Waninge,, 2016), we selected 15 physical health problems with less obvious signs and symptoms because they are easily overlooked: constipation, epilepsy, pneumonia, reflux, dysphagia, urinary tract infection, hypertension, osteoporosis, arthrosis, cardiac disease, COPD/Asthma, retention of urine, hypothermia, parkinsonism, and spasticity. We did not include physical health problems with visible or recognizable symptoms such as scoliosis and eczema. The online survey was conducted between May and June 2016.
Participants
Daily caregivers identify and monitor health problems and subsequently report these to a physician. In the Netherlands, ID physicians are most often responsible for the medical support for adults with SPIMD. Therefore, members of the Dutch Society of Physicians working with People with ID (NVAVG) who are experienced in working with adults with SPIMD were asked to fill in the survey. At the time of the survey (2016), there were approximately 220 ID physicians working in various facilities such as central residential settings, community-based homes, supported living, day-activity centers and outpatient facilities. The survey was completed by 40 ID physicians. Most respondents were 45 years old or younger (60%). The majority of respondents were female (87%) who had more than five years work experience with adults with SPIMD (72.5%). The work locations of the respondents were dispersed throughout different regions of the Netherlands.
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods
Data collection
The survey consisted of one question regarding each of the 15 physical health problems, specifically, ´What measurement methods are being used in your facility to identify ………... in adults with SPIMD?’ The multiple-choice options were based on interviews with physicians of four residential facilities for people with ID. In addition to the multiple-choice options, we included an "other" option with a free-form text field so that respondents could fill in any other measurement methods that were not listed.
The link to the online survey and information regarding the study were e-mailed to members of the NVAVG by the membership administrators. Potential respondents could access the survey questionnaire by clicking the URL hyperlink contained in the e-mail. Respondents could reply anonymously. To help maximize the response rates, the distribution of the survey was preceded by advertising on the website of the NVAVG. We could not target reminders to individuals who had not responded as replies were anonymous. One general reminder e-mail was sent by the NVAVG asking those members who had not yet completed the survey to consider doing so.
Two co-authors (A.W. and H.M.J.v.S.L.d.V.) piloted the questionnaire; the amount of time estimated for completion of the survey was found to be approximately 30 minutes.
Data analyses
Descriptive statistics such as percentages (%) and frequencies (N) were generated to report the measurement methods used in current practice for each of the 15 health problems. We summarized the responses to the survey by type and frequency. For the "other" option with a free-form text field, data were summarized and grouped into themes per physical health problem such as observing health related change and observing and reporting of specific signs and symptoms of a health problem.
Reliability and validity of the standardized measurement methods
To determine the reliability and validity of the reported standardized measurement methods in the survey, we performed a literature review.
Data collection
An electronic search of MedLine/PubMed, the Cochrane library, PsychINFO, Embase, and CINAHL was performed in November 2017. The following keywords were utilized:
[Intellectual disability] AND [psychometric properties] AND [the name of the measurement method].
The timeframe for the literature search was the last ten years (between January 2007 and November 2017). Criteria for inclusion were a full-text article; published in English; peer reviewed; population of interest was people with intellectual disabilities; with a focus on the reliability and validity of the measurement method of interest. The exclusion criteria were conference abstract; case report; narrative review; descriptive studies; letter to the editor; and gray literature.
Chapter 5
For the included articles, the data were extracted per measurement method by the first author in relationship to the following: author(s), year of publication, study design, reliability and validity, reference test, participant characteristics (study population), conclusion regarding measurement method, and rating of the measurement property.
Non-ID population
We anticipated that the literature would be limited regarding people with ID because there is a lack of robust research evidence concerning the health and health care of this population (Robertson, Hatton, Baines, & Emerson, 2015). Hence, we conducted an additional search without ‘Intellectual disability’ search terms. Additional exclusion criteria were critical care setting and studies based on newborns, animal, and in-vitro studies.
In the event that the search results yielded numerous hits (>500), we prioritized based on the strength of the evidence and only included systematic reviews (OCEBM, 2011). Details on the database-specific search strategy can be obtained from the corresponding author.
Data analyses
To provide a positive or negative rating for the measurement properties, two raters (EAvT, AW) independently rated the criteria for sufficient reliability and validity as positive, indeterminate, or negative (Terwee, 2011). The criteria for reliability and validity that is relevant for the studies we found are displayed in Table 1. We added the terms sensitivity and specificity to criterion validity. Sensitivity and specificity are measures of validity and provide information regarding the accuracy of the measurement (van Stralen et al., 2009).
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods
Table 1. The quality criteria for reliability and validity (Terwee, 2011)
Property Rating Quality Criteria
Reliability
Reliability + ICC/weighted Kappa ≥ 0.70 OR Pearson’s r ≥ 0.80 ? Neither ICC/weighted Kappa, nor Pearson’s r determined - ICC/weighted Kappa < 0.70 OR Pearson’s r < 0.80 Measurement error + MIC > SDC OR MIC outside the LOA
? MIC not defined
- MIC ≤ SDC OR MIC equals or inside LOA Validity
Construct validity
- Structural validity + ? Factors should explain at least 50% of the variance Explained variance not mentioned - Factors explain < 50% of the variance
Construct validity
Hypothesis testing + Correlations with instruments measuring the same construct ≥0.50 OR at least 75% of the results are in accordance with the hypotheses AND correlations with related constructs are higher than with unrelated constructs
? Solely correlations determined with unrelated constructs
- Correlations with instruments measuring the same construct <0.50 OR
<75% of the results are in accordance with the hypotheses OR correlations with related constructs are lower than with unrelated constructs
Criterion validity + Convincing arguments that gold standard is “gold” AND correlation with gold standard ≥0.70
? No convincing arguments that gold standard is “gold” - Correlation with gold standard <0.70
Sensitivity and
specificity Quality criteria depends on the relative importance one assigns to sensitivity versus specificity. Selecting the optimal balance of sensitivity and specificity depends on the purpose for which the test is used.
+ positive rating; ? indeterminate rating; - negative rating
SDC=smallest detectable change; MIC=minimal important change; LOA=limits of agreement; ICC=intraclass correlation coefficient
RESULTS
Results are presented in two sections: the results of the survey regarding the measurement methods used in practice and the reliability and validity of nine standardized measurement methods that are used in current practice.
Inventory of the measurement methods
Table 2 shows the results of the survey. Results per physical health problem are listed from the highest to the lowest percentage. We only report answers that were given by ≥ 25 % of the ID physicians.
Chapter 5
For the included articles, the data were extracted per measurement method by the first author in relationship to the following: author(s), year of publication, study design, reliability and validity, reference test, participant characteristics (study population), conclusion regarding measurement method, and rating of the measurement property.
Non-ID population
We anticipated that the literature would be limited regarding people with ID because there is a lack of robust research evidence concerning the health and health care of this population (Robertson, Hatton, Baines, & Emerson, 2015). Hence, we conducted an additional search without ‘Intellectual disability’ search terms. Additional exclusion criteria were critical care setting and studies based on newborns, animal, and in-vitro studies.
In the event that the search results yielded numerous hits (>500), we prioritized based on the strength of the evidence and only included systematic reviews (OCEBM, 2011). Details on the database-specific search strategy can be obtained from the corresponding author.
Data analyses
To provide a positive or negative rating for the measurement properties, two raters (EAvT, AW) independently rated the criteria for sufficient reliability and validity as positive, indeterminate, or negative (Terwee, 2011). The criteria for reliability and validity that is relevant for the studies we found are displayed in Table 1. We added the terms sensitivity and specificity to criterion validity. Sensitivity and specificity are measures of validity and provide information regarding the accuracy of the measurement (van Stralen et al., 2009).
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods
Table 1. The quality criteria for reliability and validity (Terwee, 2011)
Property Rating Quality Criteria
Reliability
Reliability + ICC/weighted Kappa ≥ 0.70 OR Pearson’s r ≥ 0.80 ? Neither ICC/weighted Kappa, nor Pearson’s r determined - ICC/weighted Kappa < 0.70 OR Pearson’s r < 0.80 Measurement error + MIC > SDC OR MIC outside the LOA
? MIC not defined
- MIC ≤ SDC OR MIC equals or inside LOA Validity
Construct validity
- Structural validity + ? Factors should explain at least 50% of the variance Explained variance not mentioned - Factors explain < 50% of the variance
Construct validity
Hypothesis testing + Correlations with instruments measuring the same construct ≥0.50 OR at least 75% of the results are in accordance with the hypotheses AND correlations with related constructs are higher than with unrelated constructs
? Solely correlations determined with unrelated constructs
- Correlations with instruments measuring the same construct <0.50 OR
<75% of the results are in accordance with the hypotheses OR correlations with related constructs are lower than with unrelated constructs
Criterion validity + Convincing arguments that gold standard is “gold” AND correlation with gold standard ≥0.70
? No convincing arguments that gold standard is “gold” - Correlation with gold standard <0.70
Sensitivity and
specificity Quality criteria depends on the relative importance one assigns to sensitivity versus specificity. Selecting the optimal balance of sensitivity and specificity depends on the purpose for which the test is used.
+ positive rating; ? indeterminate rating; - negative rating
SDC=smallest detectable change; MIC=minimal important change; LOA=limits of agreement; ICC=intraclass correlation coefficient
RESULTS
Results are presented in two sections: the results of the survey regarding the measurement methods used in practice and the reliability and validity of nine standardized measurement methods that are used in current practice.
Inventory of the measurement methods
Table 2 shows the results of the survey. Results per physical health problem are listed from the highest to the lowest percentage. We only report answers that were given by ≥ 25 % of the ID physicians.
Chapter 5
Table 2. Measurement methods as reported by ID physicians (n=40)
Physical health
problem Measurement methods used %
Constipation Bristol Stool Form Scale (BSFS) 82.5
Reporting stool using their own bowel charts (which sometimes
includes the BSFS) 70.0
Epilepsy Seizure description 80.0
Monthly seizure calendar 70.0
Filming/video recording the episode 62.5
Yearly seizure calendar 55.0
Seizure recording form: type and frequency of seizures 50.0
Pneumonia Thermometer 70.0
Form to record temperature measurements 37.5
Other*
• Observing health related change, such as change in behaviour
• Observing and reporting signs and symptoms • Monitoring and reporting signs and symptoms during
treatment • Pulse oximeter
80.0
Reflux Other*
• Observing health related change
• Observing and reporting signs and symptoms • Monitoring and reporting signs and symptoms during
treatment
82.5
Dysphagia ‘Signaleringslijst Verslikken’ 42.5
Other*
• Observing and reporting signs and symptoms • Screening list designed by own speech therapist • Personalised swallowing passports made by speech
therapist
62.5
Urinary tract
infection Test requisition forms wherein the method of collection and indication is specified 75.0
Male: obtaining urine specimen by condom catheter 67.5
Female: obtaining urine specimen by use of a single catheter 62.5
Thermometer 50.0
Form to record temperature measurements 25.0
Other*
• Observing health related change
• Observing and reporting signs and symptoms • Alternative sampling methods for collecting of urine
specimens
o suprapubic aspiration or catheter o urine collection bag adhered to the skin o clean bedpan
o incontinence pads and adult diapers
▪ squeezing urine out of disposable diaper ▪ inserting diapers pads in place of their
standard absorbent matrix ▪ placing urine dipstick into diaper ▪ placing TENA U-test in-pad
27.5
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods
Table 2. (continued)
Physical health
problem Measurement methods used %
Hypertension Manual sphygmomanometer 85.0
Automated sphygmomanometer 82.5
Osteoporosis Other*
• Screening for risk factors for osteoporosis • Observing and reporting signs and symptoms
72.5
Arthrosis Other*
• Observing health related change
• Observing and reporting signs and symptoms
• Monitoring and reporting limitation range of motion of the involved joint
65.0
None 25.0
Cardiac disease Observation of oedema ankle 67.5
Measuring weight 65.0
Measuring blood pressure 62.5
Other*
• Observing and reporting signs and symptoms 25.0
COPD/Asthma Pulse oximeter 42.5
Other
• Observing and reporting signs and symptoms 65.0
Retention of urine Bladderscan 65.0
Other*
• Observing health related change
• Observing and reporting of signs and symptoms • Occasionally catheterization bladder
40.0
Hypothermia Rectal temperature measurement 92.5
Ear thermometer 55.0
Form to record temperature measurements 47.5
Parkinsonism Other*
• Barnes Akathisia Rating Scale
• Observing and reporting or filming/video recording signs and symptoms
57.5
None 25.0
Spasticity Other*
• Observing and reporting or filming/video recording signs and symptoms
62.5
None 27.5
*The term ‘other’ relates to the option for respondents to add additional measurement methods
Nine standardized measurement methods were reported: the Bristol Stool Form Scale (constipation), ear and rectal thermometer (pneumonia, urinary tract infection, hypothermia), ‘Signaleringslijst Verslikken’ (dysphagia), manual and automated sphygmomanometer (hypertension, cardiac disease), pulse oximeter (pneumonia, COPD/asthma), Bladderscan (retention of urine), and the Barnes Akathisia Rating Scale (parkinsonism). Other measurement methods that were frequently mentioned were seizure description (epilepsy) and test requisition forms specifying the method of collection and indication (urinary tract infection).
Chapter 5
Table 2. Measurement methods as reported by ID physicians (n=40)
Physical health
problem Measurement methods used %
Constipation Bristol Stool Form Scale (BSFS) 82.5
Reporting stool using their own bowel charts (which sometimes
includes the BSFS) 70.0
Epilepsy Seizure description 80.0
Monthly seizure calendar 70.0
Filming/video recording the episode 62.5
Yearly seizure calendar 55.0
Seizure recording form: type and frequency of seizures 50.0
Pneumonia Thermometer 70.0
Form to record temperature measurements 37.5
Other*
• Observing health related change, such as change in behaviour
• Observing and reporting signs and symptoms • Monitoring and reporting signs and symptoms during
treatment • Pulse oximeter
80.0
Reflux Other*
• Observing health related change
• Observing and reporting signs and symptoms • Monitoring and reporting signs and symptoms during
treatment
82.5
Dysphagia ‘Signaleringslijst Verslikken’ 42.5
Other*
• Observing and reporting signs and symptoms • Screening list designed by own speech therapist • Personalised swallowing passports made by speech
therapist
62.5
Urinary tract
infection Test requisition forms wherein the method of collection and indication is specified 75.0
Male: obtaining urine specimen by condom catheter 67.5
Female: obtaining urine specimen by use of a single catheter 62.5
Thermometer 50.0
Form to record temperature measurements 25.0
Other*
• Observing health related change
• Observing and reporting signs and symptoms • Alternative sampling methods for collecting of urine
specimens
o suprapubic aspiration or catheter o urine collection bag adhered to the skin o clean bedpan
o incontinence pads and adult diapers
▪ squeezing urine out of disposable diaper ▪ inserting diapers pads in place of their
standard absorbent matrix ▪ placing urine dipstick into diaper ▪ placing TENA U-test in-pad
27.5
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods
Table 2. (continued)
Physical health
problem Measurement methods used %
Hypertension Manual sphygmomanometer 85.0
Automated sphygmomanometer 82.5
Osteoporosis Other*
• Screening for risk factors for osteoporosis • Observing and reporting signs and symptoms
72.5
Arthrosis Other*
• Observing health related change
• Observing and reporting signs and symptoms
• Monitoring and reporting limitation range of motion of the involved joint
65.0
None 25.0
Cardiac disease Observation of oedema ankle 67.5
Measuring weight 65.0
Measuring blood pressure 62.5
Other*
• Observing and reporting signs and symptoms 25.0
COPD/Asthma Pulse oximeter 42.5
Other
• Observing and reporting signs and symptoms 65.0
Retention of urine Bladderscan 65.0
Other*
• Observing health related change
• Observing and reporting of signs and symptoms • Occasionally catheterization bladder
40.0
Hypothermia Rectal temperature measurement 92.5
Ear thermometer 55.0
Form to record temperature measurements 47.5
Parkinsonism Other*
• Barnes Akathisia Rating Scale
• Observing and reporting or filming/video recording signs and symptoms
57.5
None 25.0
Spasticity Other*
• Observing and reporting or filming/video recording signs and symptoms
62.5
None 27.5
*The term ‘other’ relates to the option for respondents to add additional measurement methods
Nine standardized measurement methods were reported: the Bristol Stool Form Scale (constipation), ear and rectal thermometer (pneumonia, urinary tract infection, hypothermia), ‘Signaleringslijst Verslikken’ (dysphagia), manual and automated sphygmomanometer (hypertension, cardiac disease), pulse oximeter (pneumonia, COPD/asthma), Bladderscan (retention of urine), and the Barnes Akathisia Rating Scale (parkinsonism). Other measurement methods that were frequently mentioned were seizure description (epilepsy) and test requisition forms specifying the method of collection and indication (urinary tract infection).
Chapter 5
The measurement methods mentioned as ‘other’ could be divided into two groups: (1) recognizing health-related change which included change in function, change in abilities, change in behaviour, distress, agitation, discomfort, feeling ill, crying, suspected pain, sleeping problems, decrease in alertness, or decrease in well-being; (2) observing specific signs and symptoms of a health problem such as shortness of breath, blood in urine, or tremor.
Furthermore, additional measurement methods included lists that were especially made for use in an individual setting (obstipation and dysphagia) and various alternative sampling methods for collecting of urine specimens (urinary tract infection).
Reliability and validity of the standardized measurement methods
The search for literature regarding the reliability and validity of the standardized measurement methods regarding people with ID/SPIMD identified no studies. Non-ID population
An overview of the reliability and validity of the measurement method is provided in Table 3. Ta bl e 3. Rel iabi lit y a nd v al id ity o f th e s ta nd ar dized meas ur emen t meth od s in no n-ID popu la tion M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Br is tol Stoo l Fo rm S cal e (BSFS) Rel ia bi lit y Chu m pi ta zi (2016) Cros s-sec tion al Ex pe rts st oo l pho to gr aph s In tra ra te r ICC=0 .8 9** * ( 95% CI 0.8 6 to 0. 91) + C ategor is ing co nst ip at io n, n or m al or di ar rh oea ICC=0 .6 5** * ( 95% CI 0.5 4 to 0. 77) - In te rra te r ICC=0 .8 8** * ( 95% CI 0.8 6 to 0. 90) + Blak e (201 6) Cros s-sec tion al Hea lth y ad ul ts , ex per ts κ= 0. 25 - Ex pe rts , s to ol m odel s κ= 0. 78 + Hea lth y ad ul ts , s to ol m odel s κ= 0. 72 + Chu m pi ta zi (2016) Cros s-sec tion al Ex pe rts , s to ol ph ot ogr aph s C ategor is ing co nst ip at io n, n or m al or di ar rh oea ICC 0 .7 5** * ( 95% CI 0.6 9 to 0. 81) + Va lidi ty Blak e (201 6) Cros s-sec tion al Pat ient s IBS -D and heal th y adul ts Con stru ct M D* ** ? Saad (2 010) Pro sp ec tiv e cohor t Hea lth y ad ul ts Cri te rio n Col on ic tr an si t r=− 0.1 3 (95% CI −0 .3 6 to 0. 14, ns ) - Adul ts wi th c ons tipat ion r=− 0.6 2** * ( 95 % CI −0 .7 8 to −0 .4 0) - Hea lth y ad ul ts W hol e-gut tra ns it r=− 0.1 0 (95% CI −0 .3 3 to 0. 16, ns ) - Adul ts wi th c ons tipat ion r=− 0.6 1** * ( 95 % CI −0 .7 7 to −0 .3 7) - Rus so (201 3) Cas e cont rol Chi ld re n wi th and w ith out co nst ip at io n ρ= −0. 85* ** (95% CI −0 .8 8 to −0. 80) + Blak e (201 6) Cros s-sec tion al Hea lth y ad ul ts Sto ol wa te r c ont ent ρ= 0. 491* ** - Ex pe rts ρ= 0. 701* ** + Koppen (201 6) Cros s-sec tion al Par ent s Pa re nta l re po rt κ=0 .3 ** * – Kra us (2016) Cros s-sec tion al Adul ts a nd c hi ldr en wi th D uc hen ne M us cu lar Dy stro ph y Se ns iti vi ty / sp eci fici ty Con sti pa tio n R om e-III Se ns iti vi ty 18% , sp eci fici ty 95 % 86
Chapter 5
The measurement methods mentioned as ‘other’ could be divided into two groups: (1) recognizing health-related change which included change in function, change in abilities, change in behaviour, distress, agitation, discomfort, feeling ill, crying, suspected pain, sleeping problems, decrease in alertness, or decrease in well-being; (2) observing specific signs and symptoms of a health problem such as shortness of breath, blood in urine, or tremor.
Furthermore, additional measurement methods included lists that were especially made for use in an individual setting (obstipation and dysphagia) and various alternative sampling methods for collecting of urine specimens (urinary tract infection).
Reliability and validity of the standardized measurement methods
The search for literature regarding the reliability and validity of the standardized measurement methods regarding people with ID/SPIMD identified no studies. Non-ID population
An overview of the reliability and validity of the measurement method is provided in Table 3. Ta bl e 3. Rel iabi lit y a nd v al id ity o f th e s ta nd ar dized meas ur emen t meth od s in no n-ID popu la tion M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Br is tol Stoo l Fo rm S cal e (BSFS) Rel ia bi lit y Chu m pi ta zi (2016) Cros s-sec tion al Ex pe rts st oo l pho to gr aph s In tra ra te r ICC=0 .8 9** * ( 95% CI 0.8 6 to 0. 91) + C ategor is ing co nst ip at io n, n or m al or di ar rh oea ICC=0 .6 5** * ( 95% CI 0.5 4 to 0. 77) - In te rra te r ICC=0 .8 8** * ( 95% CI 0.8 6 to 0. 90) + Blak e (201 6) Cros s-sec tion al Hea lth y ad ul ts , ex per ts κ= 0. 25 - Ex pe rts , s to ol m odel s κ= 0. 78 + Hea lth y ad ul ts , s to ol m odel s κ= 0. 72 + Chu m pi ta zi (2016) Cros s-sec tion al Ex pe rts , s to ol ph ot ogr aph s C ategor is ing co nst ip at io n, n or m al or di ar rh oea ICC 0 .7 5** * ( 95% CI 0.6 9 to 0. 81) + Va lidi ty Blak e (201 6) Cros s-sec tion al Pat ient s IBS -D and heal th y adul ts Con stru ct M D* ** ? Saad (2 010) Pro sp ec tiv e cohor t Hea lth y ad ul ts Cri te rio n Col on ic tr an si t r=− 0.1 3 (95% CI −0 .3 6 to 0. 14, ns ) - Adul ts wi th c ons tipat ion r=− 0.6 2** * ( 95 % CI −0 .7 8 to −0 .4 0) - Hea lth y ad ul ts W hol e-gut tra ns it r=− 0.1 0 (95% CI −0 .3 3 to 0. 16, ns ) - Adul ts wi th c ons tipat ion r=− 0.6 1** * ( 95 % CI −0 .7 7 to −0 .3 7) - Rus so (201 3) Cas e cont rol Chi ld re n wi th and w ith out co nst ip at io n ρ= −0. 85* ** (95% CI −0 .8 8 to −0. 80) + Blak e (201 6) Cros s-sec tion al Hea lth y ad ul ts Sto ol wa te r c ont ent ρ= 0. 491* ** - Ex pe rts ρ= 0. 701* ** + Koppen (201 6) Cros s-sec tion al Par ent s Pa re nta l re po rt κ=0 .3 ** * – Kra us (2016) Cros s-sec tion al Adul ts a nd c hi ldr en wi th D uc hen ne M us cu lar Dy stro ph y Se ns iti vi ty / sp eci fici ty Con sti pa tio n R om e-III Se ns iti vi ty 18% , sp eci fici ty 95 %
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods
Ta bl e 3. (con tin ued ) M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Ty m pa ni c (e ar)/ rec ta l the rmo m et er Rel ia bi lit y Zh en (2014) Sy ste m at ic rev iew m eta -anal ys is Chi ld re n <12 y ear s, ty m pani c th erm om ete r M eas ur em ent erro r C lin ic all y rel ev ant ac cur ac y: 95 % LOA ±0. 5°C (Ni ve n, 201 5) Rec ta l m er cur y and el ec troni c Pool ed MD 0 .2 2°C (95% L OA −0 .4 4 to 1. 30) - Rec ta l m er cur y Pool ed MD 0 .2 1°C (95% L OA −0 .4 4 to 1. 27) - Rec ta l e lec tro nic Pool ed MD 0 .2 4°C (95% L OA −0 .4 6 to 1. 34) - Fe ve r, re cta l m er cur y, el ec tron ic Pool ed MD 0 .1 5°C (95% L OA −0 .3 2 to 1. 10) - Niv en (201 5) Sy ste m at ic rev iew m eta -anal ys is Adul ts a nd c hi ldr en, ty m pani c th erm om ete r Fe ve r, re cta l Pool ed MD − 0.1 2°C (95% L OA −0 .6 1 to 0. 38) - Fe ve r, ce ntra l Pool ed MD -0 .0 6°C (95% L OA -0. 82 to 0. 69) - H ypot her m ia, c ent ral Pool ed MD -0 .2 2°C (95% L OA -1. 75 to 1. 31) - Se ns iti vi ty / sp eci fici ty Fe ve r, ce ntra l Pool ed s en si tivi ty 74% (95 % CI 64 to 84) , p oo led sp eci fic ity 96% (95 % CI 92 to 99) Zh en (2015) Sy ste m at ic rev iew m eta -anal ys is Chi ld re n <18 y ear s, ty m pani c th erm om ete r Fe ve r, re cta l Pool ed s en si tivi ty 70% (95 % CI 68 to 72) , p oo led sp eci fic ity 80% (95 % CI 85 to 88) , p oo led p os itiv e lik elih oo d ra tio 9 .14 (95% CI 6 .3 7 to 13. 11) , po ol ed negat iv e lik eli hoo d ra tio 0 .2 4 (95% CI 0.1 7 to 0. 34) Tabl e 3. (con tin ued ) M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Ty m pa ni c (e ar)/ rec ta l the rmo m et er (con tin ued ) Niv en (201 5) Sy ste m at ic rev iew m eta -anal ys is Adul ts a nd c hi ldr en, rec tal th erm om ete r M eas ur em ent erro r C lin ic all y rel ev ant ac cur ac y: 95 % LOA ±0. 5°C (Ni ve n, 201 5) Fe ve r, pu lm onar y arte ry ca th ete r Pool ed MD −0 .1 0 (95%C I −0 .1 7 to −0. 03) + ‘Sig na le ring s-lijs t v er sli kken ’ - M an ual a nd au to mat ed sph ygm om ano met er Rel ia bi lit y Dun co m be (2017) Sy ste m at ic rev iew m eta -anal ys is Chi ld re n ≤18 y ear s, aut om at ed dev ic es M eas ur em ent erro r Clin ic all y rel ev ant ac cur ac y: MD ≤5m m Hg (Dun co m be , 2017) M anual dev ic e SBP pool ed e ffe ct 2.5 3m m Hg* (95 % CI 0.5 7 to 4. 50) DBP ns + Jega th es war a n (201 7) Sy ste m at ic rev iew m eta -anal ys is Adul ts , a uto m ate d dev ic es 24 -hour am bul at or y BP m oni to ring SBP w ei ght ed MD -1.5 2m m Hg (95% CI -3.2 9 to 0. 25; ns ) DBP w ei ght ed MD 0.3 3m m Hg (95% CI -0.9 7 to 1. 64; ns ) + Kal lioi ne n (2017) Sy ste m at ic rev iew In tra -a rte ria l Signi fic ant m ean ef fec ts range SBP -23 to 6, DBP -3 to +5 .6 - M anual (m er cu ry ) Signi fic ant m ean ef fec ts range SBP -3.7 to 16. 53, DBP -8 to 9 .71 - Adul ts , m anu al de vi ces In tra -a rte ria l Signi fic ant m ean ef fec ts range SBP -9.7 to -4 .0 , DBP 5 .1 - M anual m erc ury Signi fic ant m ean ef fec ts range SBP -0.8 , DBP -1 .7 + Chapter 5 88
Ta bl e 3. (con tin ued ) M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Ty m pa ni c (e ar)/ rec ta l the rmo m et er (con tin ued ) Niv en (201 5) Sy ste m at ic rev iew m eta -anal ys is Adul ts a nd c hi ldr en, rec tal th erm om ete r M eas ur em ent erro r C lin ic all y rel ev ant ac cur ac y: 95 % LOA ±0. 5°C (Ni ve n, 201 5) Fe ve r, pu lm onar y arte ry ca th ete r Pool ed MD −0 .1 0 (95%C I −0 .1 7 to −0. 03) + ‘Sig na le ring s-lijs t v er sli kken ’ - M an ual a nd au to mat ed sph ygm om ano met er Rel ia bi lit y Dun co m be (2017) Sy ste m at ic rev iew m eta -anal ys is Chi ld re n ≤18 y ear s, aut om at ed dev ic es M eas ur em ent erro r Clin ic all y rel ev ant ac cur ac y: MD ≤5m m Hg (Dun co m be , 2017) M anual dev ic e SBP pool ed e ffe ct 2.5 3m m Hg* (95 % CI 0.5 7 to 4. 50) DBP ns + Jega th es war a n (201 7) Sy ste m at ic rev iew m eta -anal ys is Adul ts , a uto m ate d dev ic es 24 -hour am bul at or y BP m oni to ring SBP w ei ght ed MD -1.5 2m m Hg (95% CI -3.2 9 to 0. 25; ns ) DBP w ei ght ed MD 0.3 3m m Hg (95% CI -0.9 7 to 1. 64; ns ) + Kal lioi ne n (2017) Sy ste m at ic rev iew In tra -a rte ria l Signi fic ant m ean ef fec ts range SBP -23 to 6, DBP -3 to +5 .6 - M anual (m er cu ry ) Signi fic ant m ean ef fec ts range SBP -3.7 to 16. 53, DBP -8 to 9 .71 - Adul ts , m anu al de vi ces In tra -a rte ria l Signi fic ant m ean ef fec ts range SBP -9.7 to -4 .0 , DBP 5 .1 - M anual m erc ury Signi fic ant m ean ef fec ts range SBP -0.8 , DBP -1 .7 +
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods
Ta bl e 3. (con tin ued ) M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Pul se o xi m et er Rel ia bi lit y Hay ne s (20 07) Cros s-sec tion al Adul ts , f inger v er sus finger c lip pl ac ed on ea r M eas ur em ent erro r Clin ic all y rel ev ant ac cur ac y: MD ≤2% ; L OA ± ≤5 % (J one s, 2 015) Arte ria l bl ood gas ana ly si s Rea di ng s that di ffer ed >3 % M D* ** ? Adul ts , f inger LOA -2. 35% to 2. 35% + Adul ts , f inger c lip p lac ed on ear LOA -7. 24% to -0. 08% - Bil an (201 0) Cros s-sec tion al Young c hil dr en ##, ear M D=0 .0 2 (SD 3 .7 1), agr ee m ent κ =0 .7 + Young c hil dr en ##, th um b MD =– 0.8 2 (SD 3. 43) , agr ee m ent κ =0 .6 2 - Young c hil dr en ##, big to e MD =– 1.9 4 (SD 3. 18) , agr ee m ent κ =0 .5 7 - Jone s (2 015) Cros s-sec tion al Adul ts in int er m edi at e ca re M D=2 .1 % (L OA ±5 .1%) + Am al ak ant i (2016) Cros s-sec tion al Adul ts wi th CO PD MD =-4% (95% CI -4.6 8 to 3. 28) - Jone s (2 015) Cros s-sec tion al Adul ts in int er m edi at e ca re O xy gen s at ur at ion > 93% a rte ria l blood MD =-0.9 % (L OA ±3 .6%) + Adul ts in int er m edi at e ca re O xy gen s at ur at ion < 93% a rte ria l blood M D=3 .7 % (L OA ±5 .1%) – Rai kh el (2 012) Pro sp ec tiv e stu dy Adul ts Cap illa ry bl ood MD =-0.5 g /d L (SD 1.0 ; 95 % L OA -2. 5 to 1.5 ) ? W ils on (2 013) Cros s-sec tion al Adul ts wi th CO PD, fi nger sen sor MD =-2% (95% CI -1 to -3; L OA ±3) ? Adul ts wi th CO PD, fo rehe ad sen sor M D=2 % (95% CI 1 to 3; L OA ±4) ? O zdem ir (2017) Ret ro -sp ect iv e re co rd s Chi ld re n wi th a st hm a Norm al v ers us low FEV1 (= <6 0% of pr ed ic ted) Low FEV1 gr oup Sp O 2/M HR m edi an 0.8 2 (range 0 .58 to 1. 35) Norm al FEV1 gr oup Sp O 2/M HR m edi an 1.0 2 (range 0 .70 to 1.8 2)** * ? Ta bl e 3. (con tin ued ) M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Pul se o xi m et er (con tin ued ) Bil an (201 0) Cros s-sec tion al Young c hil dr en ##, ear Se ns iti vi ty / sp eci fici ty H ypo xaem ia: pul se ox im et er < 92% and a rte ria l b lood g as < 90 % Se ns iti vi ty 67% , sp eci fici ty 9 8%, PPV 80%, NPV 96 % Young c hil dr en ##, th um b Se ns iti vi ty 83% , sp eci fici ty 9 2%, PPV 56%, NPV 98 % Young c hil dr en ##, big to e Se ns iti vi ty 83% , sp eci fici ty 9 0%, PPV 50%, NPV 98 % Hurs t ( 2010) Pro sp ec tiv e stu dy Adul ts wi th CO PD Ex ac er bat ion: ≥2 day s of ≥2 new /w or seni ng s ym pt om s wi th at leas t o ne m aj or s ym pt om In th e pr es enc e of sy mp to ms, a c han ge in sc or e in hear t ra te 5 per m in -1 an d ox ygen s at ur at ion 1%; 7 1% se ns iti ve and 74 % sp eci fic fo r ex ac er bat io n on set Am al ak ant i (2016) Cros s-sec tion al Adul ts wi th CO PD CO PD res pi rat or y fa ilu re c rite ria spe ci fied in a rtic le Se ns iti vi ty 84. 6% (95% CI 64. 2 to 9 4.9 ), sp eci fici ty 87 .5 % (95% CI 66. 5 to 9 6.7 ), PPV 88% (95 % CI 67. 6 to 9 6.8 ), NPV% 84 (9 5% CI 63 to 94. 7) M ilner (2012) Cros s-sec tion al Pu ls e ox im ete rs Li ght m an dev ic e 30. 5% of pu ls e ox im ete rs no t ac cur at e O zdem ir (2017) Ret ro -sp ect iv e, re co rd s Chi ld re n wi th a st hm a Se ve re ai rw ay obs tru ct ion: low FEV1 (= < 60 % of pr edi ct ed) O pt ima l cu t-o ff val ue 0.9 0 Sp O 2/M HR Sp O 2/M HR <0 .9 0: se nsi tiv ity 80 .3 4% , sp eci fici ty 75 .4 2% , PPV 83. 14 %, NPV 71. 77 % Chapter 5 90
Ta bl e 3. (con tin ued ) M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Pul se o xi m et er (con tin ued ) Bil an (201 0) Cros s-sec tion al Young c hil dr en ##, ear Se ns iti vi ty / sp eci fici ty H ypo xaem ia: pul se ox im et er < 92% and a rte ria l b lood g as < 90 % Se ns iti vi ty 67% , sp eci fici ty 9 8%, PPV 80%, NPV 96 % Young c hil dr en ##, th um b Se ns iti vi ty 83% , sp eci fici ty 9 2%, PPV 56%, NPV 98 % Young c hil dr en ##, big to e Se ns iti vi ty 83% , sp eci fici ty 9 0%, PPV 50%, NPV 98 % Hurs t ( 2010) Pro sp ec tiv e stu dy Adul ts wi th CO PD Ex ac er bat ion: ≥2 day s of ≥2 new /w or seni ng s ym pt om s wi th at leas t o ne m aj or s ym pt om In th e pr es enc e of sy mp to ms, a c han ge in sc or e in hear t ra te 5 per m in -1 an d ox ygen s at ur at ion 1%; 7 1% se ns iti ve and 74 % sp eci fic fo r ex ac er bat io n on set Am al ak ant i (2016) Cros s-sec tion al Adul ts wi th CO PD CO PD res pi rat or y fa ilu re c rite ria spe ci fied in a rtic le Se ns iti vi ty 84. 6% (95% CI 64. 2 to 9 4.9 ), sp eci fici ty 87 .5 % (95% CI 66. 5 to 9 6.7 ), PPV 88% (95 % CI 67. 6 to 9 6.8 ), NPV% 84 (9 5% CI 63 to 94. 7) M ilner (2012) Cros s-sec tion al Pu ls e ox im ete rs Li ght m an dev ic e 30. 5% of pu ls e ox im ete rs no t ac cur at e O zdem ir (2017) Ret ro -sp ect iv e, re co rd s Chi ld re n wi th a st hm a Se ve re ai rw ay obs tru ct ion: low FEV1 (= < 60 % of pr edi ct ed) O pt ima l cu t-o ff val ue 0.9 0 Sp O 2/M HR Sp O 2/M HR <0 .9 0: se nsi tiv ity 80 .3 4% , sp eci fici ty 75 .4 2% , PPV 83. 14 %, NPV 71. 77 %
Identifying physical health problems in adults with SPIMD: an inventory of measurement methods
Ta bl e 3. (con tin ued ) M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Bla dd ersc an Rel ia bi lit y Al -S hai kh (2009) Cros s-sec tion al W om en In tra ra te r r=0 .9 7 (95% CI 0 .96 to 0. 98) + Pa rk (2 011) Cros s-sec tion al Adul ts wi th v oi di ng dy sf un ct io n Va ria bilit y ns ? Al -S hai kh (2009) Cros s-sec tion al W om en In te rra te r r=0 .8 2 (95% CI 0 .78 to 0. 89) + Pa rk (2 011) Cros s-sec tion al Adul ts wi th v oi di ng dy sf un ct io n Va ria bilit y ns ? Row e (2014) Cros s-sec tion al Chi ld re n un der goi ng s ur ger y or ur ody na m ic s tu di es Te st -re te st ICC=0 .9 7 MD 14m L, range 0 to 172 mL + Cho e (20 07) Cros s-sec tion al Adul ts a nd c hi ldr en wi th low er ur inar y tra ct sy mp to ms M eas ur em ent erro r Clin ic all y rel ev ant ac cur ac y: a di ffer enc e in vol um e ≤30 m L (Al -S hai kh, 2009) In -and -out c at het er iz at ion BME -150A : MD 7 .8 m l (95% CI 4 .6 to 20. 2, ns ) BVI -3000: MD 3 .6 m l (95% CI 6 .2 to 13. 3, ns ) + Al -S hai kh (2009) Cros s-sec tion al W om en MD =-12 .9 m l** * ( 95 % CI -5 .5 to -20. 2) + Row e (2014) Cros s-sec tion al Chi ld re n un der goi ng s ur ger y or ur ody na m ic s tu di es MD =-2.1 m L (95% CI -8.2 to 4 .1 ) + Jal bani (201 4) Cros s-sec tion al Adul ts wi th low er u rin ary tra ct s ym pt om s and sus pec te d neur ogen ic bl add er BVI -3000: m ea n 261m l (SD 18 6) , m edi an 18 4 (range 41 to 869) Cathe te ris ati on : m ean 260m l (SD 17 5) , m edi an 20 0 (range 50 to 680) MD ns ? Koom en (2008) Bli nd rando m is ed Anes th et is ed c hi ldr en wei ghi ng le ss tha n 25 kg Vol um e of ins till ed s alin e MD =-20%* ** (95% CI 140 to -18 0) ? Venk at ram an (2015) Cros s-sec tion al Urol og ic al pat ient s M D=1 5.9 2m l (SEM 4.0 0), ICC=0 .8 6 (95% CI 0 .8 0 to 0. 89) + G hani (2 008) Cros s-sec tion al Adul ts Voi ded ur ine M D=7 .4 m l. (95% L OA -73. 7 to 8 8.4 ), SEM di ffer enc e 7. 1m l (n s) ? Ta bl e 3 . (con tin ued ) M eas ur emen t m etho d Fi rst a uth or (y ear o f pu bl ic at io n) Des ig n Pop ul atio n Rel ia bi lit y/ val id ity Refe ren ce te st/o utc om e Res ul ts Rati ng Bla dd ersc an (c ont inue d) Va lidi ty Jal bani (201 4) Cros s-sec tion al Adul ts wi th low er u rin ary tra ct s ym pt om s and sus pec te d neur ogen ic bl add er Con stru ct In -and -out c at het er iz at ion Ex pl ai ne d var ian ce r²= 0.9 7 + Al -S hai kh (2009) Cros s-sec tion al W om en Ex pl ai ne d var ian ce r²= 0.6 2 + Koom en (2008) Bli nd rando m is ed Anes th et is ed c hi ldr en wei ghi ng le ss tha n 25 kg Vol um e of ins till ed s alin e Ex pl ai ne d var ian ce r 2=0 .6 + Cho e (20 07) Cros s-sec tion al Adul ts a nd c hi ldr en wi th low er ur inar y tra ct sy mp to ms Cri te rio n In -and -out c at het er iz at ion BME -150A : r=0 .9 2, ICC=0 .9 0 BVI -3000: r=0 .9 4, ICC=0 .9 5 + Al -S hai kh (2009) Cros s-sec tion al W om en r=0 .7 9** * ( 95% CI 0.7 0 to 0. 85) + Pa rk (2 011) Cros s-sec tion al Adul ts wi th v oi di ng dy sf un ct io n BVI -3000: r=0 .9 3 W ith RPI: r=0 .9 5 + Row e (2014) Cros s-sec tion al Chi ld re n un der goi ng s ur ger y or ur ody na m ic s tu di es ρ= 0. 96 (9 5% CI 0. 92 to 0. 97) + Koom en (2008) Bli nd rando m is ed Anes th et is ed c hi ldr en wei ghi ng le ss tha n 25 kg Vol um e of ins till ed s alin e r=0 .7 8 + G hani (2 008) Cros s-sec tion al Adul ts Voi ded ur ine r=0 .9 8** * ? Rel ia bi lit y Barne s Ak athi sia Rati ng Sc ale Va n Stri en (2015) ; Sto m sk i (2016) Sy ste m at ic rev iew Adul ts wi th s chi zophr eni a In te rra te r κ= 0. 74 to 0 .9 + Va lidi ty Va n Stri en (2015) ; Sto m sk i (2016) Sy ste m at ic rev iew Adul ts wi th s chi zophr eni a Cri te rio n DIEPSS ρ=DIEPSS 0. 88, 0. 97 ? SADI M O D ρ=SADIM O D 0. 57, 0.8 8 ? Low er lim b ac tiv ity ind ex ρ= 0 .2 6** * ? r 2=e xpl ai ned v ar ia nc e, r= Pe ars on ’s r; ρ =S pear m an’ s rho; κ =C ohen’ s kappa; ICC= In tra -C las s C or rel at io n; C I= C onf id enc e Int er val ; S D =S ta ndar d D ev iat ion ; n s= P> .05; *= P≤ .05; **= P≤ .0 1; ** *= P≤ .001; IBS -D= pa tie nt s wi th D ia rrhoea -pr edom in an t I rri ta bl e Bow el S yndr om e; M D =M ean di ffer enc e; L O A=L imi ts Of A gr ee m en t; SB P= syst ol ic bl ood pr es sur e; D BP =d ias to lic b loo d pr es sur e; Sp O 2/ M HR= ox yg en s at ur at io n/ he ar t ra te m ea su rem ent ; F EV 1= for ced ex pi ra tor y vo lum e in 1 s ec ond; R PI =R eal -tim e Pre -sca n Imag ing ; P PV =Po sit iv e Pr edi ct iv e Va lue ; N PV =N egat iv e Pr ed ict ive Va lue ; S EM =S tandar d Erro r of M ean, D IEP SS= D ru g Induc ed E xt rapy ram id al S ym pt om s Sc al e; S AD IM O D =S chedul e for the A ss essm en t of Dr ug -Indu ced M ov em en t D is or der s Ra tin g: + pos iti ve ra ting ; ? in det er m inat e ra ting ; negat iv e ra ting ##Young c hi ldr en= m ean age 42 m ont hs , SD 40 m on ths Chapter 5 92
