The ALSSQOL: balancing physical and nonphysical factors in assessing quality of life in ALS.

BACKGROUND: There is no generally accepted instrument for measuring quality of life (QOL) in patients with ALS. Current instruments are either too heavily weighted toward strength and physical function or useful for the evaluation of individuals but of less utility in assessing large samples. OBJECTIVE: To develop and evaluate the psychometric properties of an ALS-specific QOL instrument (the ALSSQOL) that would reflect overall QOL as assessed by the patient and would be valid and reliable across large samples. METHODS: The ALSSQOL is based on the McGill Quality of Life Questionnaire (MQOL), modified by changes in format and by adding questions on religiousness and spirituality, items derived from interviews with ALS patients, and items identified from open-ended questions administered during the MQOL. The psychometric properties of the ALSSQOL were assessed by a prospective multicenter study in which participants completed the ALSSQOL, other instruments measuring overall QOL, and instruments assessing religiousness, spirituality, and psychological distress. RESULTS: A 59-item ALSSQOL was developed; 342 patients evaluated its psychometric properties. Completion time averaged 15 minutes. Forty-six items loaded on six factors. The ALSSQOL demonstrated concurrent, convergent, and discriminant validity for the overall instrument and convergent validity for its subscales. Analysis of individual items permitted insight into variables of clinical importance. CONCLUSIONS: This new ALS-specific quality of life instrument is a practical tool for the assessment of overall quality of life in individuals with ALS and appears to be valid and useful across large samples. Validation studies of a shortened version are now under way.

Cardiopulmonary monitoring at home: the CHIME monitor.

A new physiologic monitor for use in the home has been developed and used for the Collaborative Home Infant Monitor Evaluation (CHIME). This monitor measures infant breathing by respiratory inductance plethysmography and transthoracic impedance; infant electrocardiogram, heart rate and R-R interval; haemoglobin O2 saturation of arterial blood at the periphery and sleep position. Monitor signals from a representative sample of 24 subjects from the CHIME database were of sufficient quality to be clinically interpreted 91.7% of the time for the respiratory inductance plethysmograph, 100% for the ECG, 99.7% for the heart rate and 87% for the 16 subjects of the 24 who used the pulse oximeter. The monitor detected breaths with a sensitivity of 96% and a specificity of 65% compared to human scorers. It detected all clinically significant bradycardias but identified an additional 737 events where a human scorer did not detect bradycardia. The monitor was considered to be superior to conventional monitors and, therefore, suitable for the successful conduct of the CHIME study.

Cardiorespiratory events recorded on home monitors: Comparison of healthy infants with those at increased risk for SIDS.

CONTEXT: Home monitors designed to identify cardiorespiratory events are frequently used in infants at increased risk for sudden infant death syndrome (SIDS), but the efficacy of such devices for this use is unproven. OBJECTIVE: To test the hypothesis that preterm infants, siblings of infants who died of SIDS, and infants who have experienced an idiopathic, apparent life-threatening event have a greater risk of cardiorespiratory events than healthy term infants. DESIGN: Longitudinal cohort study conducted from May 1994 through February 1998. SETTING: Five metropolitan medical centers in the United States. PARTICIPANTS: A total of 1079 infants (classified as healthy term infants and 6 groups of those at risk for SIDS) who, during the first 6 months after birth, were observed with home cardiorespiratory monitors using respiratory inductance plethysmography to detect apnea and obstructed breathing. MAIN OUTCOME MEASURES: Occurrence of cardiorespiratory events that exceeded predefined conventional and extreme thresholds as recorded by the monitors. RESULTS: During 718 358 hours of home monitoring, 6993 events exceeding conventional alarm thresholds occurred in 445 infants (41%). Of these, 653 were extreme events in 116 infants (10%), and of those events with apnea, 70% included at least 3 obstructed breaths. The frequency of at least 1 extreme event was similar in term infants in all groups, but preterm infants were at increased risk of extreme events until 43 weeks' postconceptional age. CONCLUSIONS: In this study, conventional events are quite common, even in healthy term infants. Extreme events were common only in preterm infants, and their timing suggests that they are not likely to be immediate precursors to SIDS. The high frequency of obstructed breathing in study participants would likely preclude detection of many events by conventional techniques. These data should be important for designing future monitors and determining if an infant is likely to be at risk for a cardiorespiratory event.

Comparison of apnea identified by respiratory inductance plethysmography with that detected by end-tidal CO(2) or thermistor. The CHIME Study Group.

As part of the Collaborative Home Infant Monitoring Evaluation (CHIME) we compared apnea identified by a customized home monitor using respiratory inductance plethysmography (RIP) with simultaneously recorded polysomnography-acquired nasal end-tidal CO(2) (PET(CO(2))) and nasal/oral thermistor in 422 infants during overnight laboratory recordings to determine concordance between techniques, sources of disagreement, and capacity of RIP to detect obstructed breaths within an apnea. Among 233 episodes of apnea identified by at least one method as >/= 16 s, 120 were observed by the CHIME monitor, 219 by PET(CO(2)), and 163 by thermistor. The positive predictive value of the CHIME-identified apnea was 89.2% (95% CI 83, 95) and 73% (95% CI 65, 81) for PET(CO(2)) and thermistor, respectively. However, the sensitivity of the CHIME monitor in identifying events detected by the other methods was only approximately 50%. Among 87 apnea events identified by all three techniques, no two methods showed high agreement in measurement of apnea duration: RIP and PET(CO(2)) (ICC = 0.54), RIP and thermistor (ICC = 0.13), PET(CO(2)) and nasal thermistor (ICC = 0.41). Among the 179 breaths identified by RIP as obstructed, 79.9% were judged to be obstructed on the PET(CO(2)) and 80.4% were judged to be obstructed on the thermistor channel. Among 238 breaths identified on PET(CO(2)) as obstructed, 54.2% were determined to be obstructed by RIP. Among 204 breaths identified on thermistor as obstructed, 55. 4% were determined to be obstructed by RIP. Reasons for discrepancies in apnea detection among channels included body movement, partial airway obstruction, and obstructed breaths. Despite these limitations the CHIME monitor provides an opportunity to record physiological data previously unavailable in the home.

Evaluation of the Ultraviolet Index: media reactions and public response.

BACKGROUND: In response to the increasing rate of skin cancer, particularly melanoma in the United States, the Environmental Protection Agency, the National Weather Service, the Centers for Disease Control and Prevention, National Association of Physicians for the Environment, and the American Academy of Dermatology, developed the Ultraviolet Index (UVI) to inform the public of the strength of the sun's rays and advise on methods for sun protection. OBJECTIVE: Our purpose was to evaluate the extent to which television stations and newspapers reported the UVI and assess the public's response to it. METHODS: To evaluate the effect of this effort, we surveyed television weather forecasters at 185 stations and examined weather pages in 54 newspapers in 58 cities that received the UVI reports. We also conducted a population probability telephone survey of 700 white adults (18 years of age and older) in these 58 cities. RESULTS: Seventy-one percent of the 169 stations that provided survey data for both 1994 and 1995 broadcast the UVI; 61% of newspapers reported the UVI. Nearly 64% of the 700 respondents (n = 445) had heard of the UVI. Of these respondents, 38% (n = 170) stated that they or their family changed their sun protection practices as a result of the UVI. CONCLUSION: The majority of television weather forecasters and newspapers reported the UVI. Most of the public was aware of the UVI, causing some to change sun protection practices. Further evaluation is required to maximize the effect of the UVI on sun protection practices.

Folk medicine and health culture in contemporary society.

Folk medicine comprises "unofficial health beliefs and practices" which rely heavily (but not exclusively) on oral transmission. It is one form of alternative medicine, and a major source for many other forms such as phytotherapy and mind/body medicine. While many folk medicine ideas and practices are associated with particular ethnic groups, many others are widely distributed throughout American society. Folk medicine is not dying out in the modern world. Because it has both medical benefits and risks, effective medical care with folk medicine requires awareness and discussion of its influence.

Culturally grounded review of research assumptions.

In this article 11 assumptions underlying many discussions of alternative medicine are discussed and critiqued: that (1) cultural factors merely constitute noise in research data that can be removed by proper design; (2) the only proper goal of alternative medicine research is the incorporation of effective practices into medicine; (3) physicians are the primary consumers of good alternative medicine research; (4) control of pathology is the sole measure of the effectiveness of alternative medicine; (5) effects on pathology can be fully separated from effects on perception or quality of life; (6) effects on individual health should be the sole focus of alternative medical research; (7) medicine is aware of all sicknesses appropriate for alternative medicine research; (8) subjective data are less valuable than objective data; (9) the best leads for research come from recognizable systems with advocates; (10) more "modern-looking," highly articulated forms are necessarily better research "bets"; and (11) all good candidates for alternative medicine research are recognized as health practices by those who use them.

Home documented monitoring of cardiorespiratory pattern and oxygen saturation in healthy infants.

The objective of this study was to establish longitudinal normative limits for home memory monitors during early infancy. Eighty-eight healthy infants were monitored overnight at 0.25-19 wk of age using the Healthdyne Smart Monitor. Apnea settings were 14 s for recording and 40 s for alarm; the bradycardia setting was 50 beats/min (5-s delay) for both recording and alarm. Arterial oxygen saturation (SaO2) was documented whenever an event was recorded. The monitor was used 77% of all possible days; median daily use was 8.0 h. Eighty-three percent of all monitor alarms were caused by loose leads, the other 17% by false apnea or false bradycardia. Of all recorded events, 68.9% were caused by false apnea or false bradycardia; the other 31.1% were central apneas that reached the recording threshold of 14 s. The longest apnea was 36 s (wk 1); the 95th percentile for longest apnea was 19.9 s in wk 1 and 18.0 s in wk 17-19 (p < 0.001). Periodic low SaO2 values occurred with periodic breathing; the lowest value was 72%. The 5th percentiles for lowest SaO2 were 82 and 86% in wk 1 and 13-19, respectively (p < 0.001), but the minimum value observed in any week was never > 81%. The median duration of SaO2 < 90% was only 5 s but the range was wide (1-183 s), and 39/527 episodes (7.4%) were > 10 s. In summary, these longitudinal data provide the first available normal limits for cardiorespiratory pattern and SaO2 during documented home monitoring in early infancy. Utilization of these normative data will improve the diagnostic validity and clinical usefulness of event recordings.

Assessment of compliance with home cardiorespiratory monitoring in infants at risk of sudden infant death syndrome. Collaborative Home Infant Monitoring Evaluation (CHIME).

OBJECTIVES: Documented monitoring was used to evaluate prospectively (1) the level of compliance among infants in whom cardiorespiratory monitoring was clinically indicated and (2) factors that might influence compliance: diagnosis, socioeconomic status, maternal age and education, and alarms. STUDY DESIGN: Sixty-seven infants (51% female, 49% term) were sequentially enrolled, and monitoring was prescribed for the following indications: siblings of sudden infant death syndrome victims (16%), apnea of prematurity (45%), and apparent life-threatening events or apnea of infancy (39%). Demographic data, alarm and event data, and a summary report of monitor use from the first monitor download were obtained. RESULTS: Maternal age, education, and insurance status did not differ significantly by indication for monitoring. The median number of monitor alarms per 10 hours of use was 0.7 for apnea or bradycardia and 0.6 for loose lead alarms. Monitors were available for use in the home from 2 to 106 days (median, 11 days). Median hours of monitor use per full day in the home was 15.5 hours. Of 67 infants, 58 used the monitor for at least part of every day in the home. The number of hours of monitor use per day did not differ significantly by diagnostic category, chronologic age, alarms, maternal age, education, or insurance type. This study population of infants at increased risk of sudden infant death syndrome had excellent compliance; 75% of the infants were monitored more than 10.5 hours per day, and 25% were monitored more than 21 hours per day. CONCLUSIONS: Documented monitoring provides an objective measure of compliance. These data provide a potential goal for level of compliance with home cardiorespiratory monitoring.