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1.  Asthma Care Quality for Children with Minority-Serving Providers 
Objective
To compare asthma care quality for children with and without minority-serving providers.
Design
Cross-sectional telephone survey of parents, linked with a mailed survey of their children’s providers.
Setting
A Medicaid-predominant health plan and multispecialty provider group in Massachusetts.
Participants
Children with persistent asthma identified from claims and encounter data.
Main Exposure
Whether the child’s provider was minority-serving (>25% of patients black or Latino).
Outcomes
Parent report of whether the child had: 1) ever received inhaled steroids; 2) received influenza vaccination during the past season and 3) received an asthma action plan in the past year.
Results
The study included 563 children. In unadjusted analyses, Latino children and those with minority-serving providers were more likely to have never received inhaled steroids. In adjusted models, the odds of never receiving inhaled steroids were not significantly different for children with minority-serving providers (OR 1.29, 95% CI 0.63–2.64), or for Latino vs. white children (OR 1.76, 95% CI 0.74–4.18); odds were increased for children receiving care in community health centers (OR 4.88, 95% CI 1.70–14.02) or hospital clinics (OR 4.53, 95% CI 1.09–18.92) vs. multi-specialty practices. Such differences were not seen for influenza vaccinations or action plans.
Conclusions
Children with persistent asthma were less likely to receive inhaled steroids if they received care in community health centers or hospital clinics. Practice setting mediated initially-observed disparities in inhaled steroid use by Latino children and those with minority-serving providers. No differences by race/ethnicity or minority-serving provider were observed for influenza vaccinations and asthma action plans.
doi:10.1001/archpediatrics.2009.243
PMCID: PMC4319182  PMID: 20048240
2.  Motivating Adherence Among Adolescents With Cystic Fibrosis: Youth and Parent Perspectives 
Pediatric pulmonology  2014;50(2):127-136.
Summary
As advances in the care of individuals with cystic fibrosis (CF) have resulted in improved survival, therapeutic regimens for treatment of CF have become increasingly complex. This high treatment burden poses challenges to chronic disease self-management, particularly amongst adolescents. The aim of this qualitative study was to understand the barriers and facilitators of adherence to chronic CF therapies as perceived by adolescents with CF and their parents. In a series of structured interviews with 18 youth and their parents, we explored issues related to daily routines, youth and parental roles regarding chronic therapy, and motivators for adherence. All interviews were audio-recorded and coded for themes and patterns. Reported barriers to adherence included time pressures, competing priorities, heightened awareness of disease trajectory, privacy concerns, and lack of perceived consequences from non-adherence. Identified facilitators for adherence included recognizing the importance of therapies, developing strong relationships with care teams, establishing structured routines, and focusing on shifting responsibilities from a parent to their adolescent child. The themes uncovered by these interviews identify areas for intervention and support by clinical programs seeking to improve adherence and self-management strategies for adolescents with CF Pediatr Pulmonol.
doi:10.1002/ppul.23017
PMCID: PMC4160425  PMID: 24616259
cystic fibrosis; adolescents; adherence
3.  Treatment Complexity in Cystic Fibrosis: Trends over Time and Associations with Site-Specific Outcomes 
Background
Patients with cystic fibrosis (CF) have increasing treatment complexity and high treatment burden. We describe trends in treatment complexity and evaluate its relationship with health outcomes.
Methods
Using Epidemiologic Study of Cystic Fibrosis (ESCF) data, we developed a treatment complexity score (TCS) from 37 chronic therapies and assessed change by age group (6–13, 14–17, and 18+ years) over a three year period. Differences in average site TCS were evaluated by quartiles based on FEV1, BMI, or Treatment Burden score on the Cystic Fibrosis Questionnaire-Revised (CFQ-R).
Results
TCS scores were calculated for 7252 individual patients (42% child, 16% adolescent, 43% adult) across 153 sites. In 2003, mean TCS was 11.1 for children, 11.8 for adolescents, and 12.1 for adults. In all 3 age groups, TCS increased over 3 years; the increase in TCS from 2003–2005 for children was 1.25 (95% CI 1.16–1.34), for adolescents 0.77 (0.62–0.93), and for adults 1.20 (1.08–1.31) (all p<0.001 for trend over time). At the site level, there were no significant differences in mean TCS based on FEV1 quartile. Mean TCS was higher in the highest BMI z-score quartile. Across all 3 versions of the CFQ-R, mean TCS was lower at sites in the highest quartiles (lowest burden) for CFQ-R Treatment Burden scores.
Conclusion
Treatment complexity was highest among adults with CF, although over 3 years, we observed a significant increase in treatment complexity in all age groups. Such increases in treatment complexity pose a challenge to patient self-management and adherence. Future research is needed to understand the associations between treatment complexity and subsequent health outcomes to reduce treatment burden and improve disease management.
doi:10.1016/j.jcf.2012.12.009
PMCID: PMC4073628  PMID: 23352205
4.  Transition Care: Future Directions in Education, Health Policy, and Outcomes Research 
Academic pediatrics  2014;14(2):120-127.
All youth must transition from pediatric to adult-centered medical care. This process is especially difficult for youth with special health care needs. Many youth do not receive the age-appropriate medical care they need and are at risk during this vulnerable time. Previous research has identified barriers that may prevent effective transition, and protocols have been developed to improve the process. Health outcomes related to successful transition have yet to be fully defined.
Health care transition can also be influenced by education of providers, but there are gaps in medical education at the undergraduate, graduate, and postgraduate levels. Current changes in federal health policy allow improved health care coverage, provide some new financial incentives, and test new structures for transitional care, including the evolution of accountable care organizations (ACO). Future work must test how these systems changes will affect quality of care. Finally, transition protocols exist in various medical subspecialties; however, national survey results show no improvement in transition readiness, and there are no consistent measures of what constitutes transition success.
In order to advance the field of transition, research must be done to integrate transition curricula at the undergraduate, graduate, and postgraduate levels; to provide advance financial incentives and pilot the ACO model in centers providing care to youth during transition; to define outcome measures of importance to transition; and to study the effectiveness of current transition tools on improving these outcomes.
doi:10.1016/j.acap.2013.11.007
PMCID: PMC4098714  PMID: 24602574
health care financing; health policy; medical education; outcomes research; transition; youth with special health care needs
5.  Estimation of Quasi-Stiffness of the Human Hip in the Stance Phase of Walking 
PLoS ONE  2013;8(12):e81841.
This work presents a framework for selection of subject-specific quasi-stiffness of hip orthoses and exoskeletons, and other devices that are intended to emulate the biological performance of this joint during walking. The hip joint exhibits linear moment-angular excursion behavior in both the extension and flexion stages of the resilient loading-unloading phase that consists of terminal stance and initial swing phases. Here, we establish statistical models that can closely estimate the slope of linear fits to the moment-angle graph of the hip in this phase, termed as the quasi-stiffness of the hip. Employing an inverse dynamics analysis, we identify a series of parameters that can capture the nearly linear hip quasi-stiffnesses in the resilient loading phase. We then employ regression analysis on experimental moment-angle data of 216 gait trials across 26 human adults walking over a wide range of gait speeds (0.75–2.63 m/s) to obtain a set of general-form statistical models that estimate the hip quasi-stiffnesses using body weight and height, gait speed, and hip excursion. We show that the general-form models can closely estimate the hip quasi-stiffness in the extension (R2 = 92%) and flexion portions (R2 = 89%) of the resilient loading phase of the gait. We further simplify the general-form models and present a set of stature-based models that can estimate the hip quasi-stiffness for the preferred gait speed using only body weight and height with an average error of 27% for the extension stage and 37% for the flexion stage.
doi:10.1371/journal.pone.0081841
PMCID: PMC3857237  PMID: 24349136
6.  Estimation of Quasi-Stiffness of the Human Knee in the Stance Phase of Walking 
PLoS ONE  2013;8(3):e59993.
Biomechanical data characterizing the quasi-stiffness of lower-limb joints during human locomotion is limited. Understanding joint stiffness is critical for evaluating gait function and designing devices such as prostheses and orthoses intended to emulate biological properties of human legs. The knee joint moment-angle relationship is approximately linear in the flexion and extension stages of stance, exhibiting nearly constant stiffnesses, known as the quasi-stiffnesses of each stage. Using a generalized inverse dynamics analysis approach, we identify the key independent variables needed to predict knee quasi-stiffness during walking, including gait speed, knee excursion, and subject height and weight. Then, based on the identified key variables, we used experimental walking data for 136 conditions (speeds of 0.75–2.63 m/s) across 14 subjects to obtain best fit linear regressions for a set of general models, which were further simplified for the optimal gait speed. We found R2 > 86% for the most general models of knee quasi-stiffnesses for the flexion and extension stages of stance. With only subject height and weight, we could predict knee quasi-stiffness for preferred walking speed with average error of 9% with only one outlier. These results provide a useful framework and foundation for selecting subject-specific stiffness for prosthetic and exoskeletal devices designed to emulate biological knee function during walking.
doi:10.1371/journal.pone.0059993
PMCID: PMC3606171  PMID: 23533662
7.  Estimation of Quasi-Stiffness and Propulsive Work of the Human Ankle in the Stance Phase of Walking 
PLoS ONE  2013;8(3):e59935.
Characterizing the quasi-stiffness and work of lower extremity joints is critical for evaluating human locomotion and designing assistive devices such as prostheses and orthoses intended to emulate the biological behavior of human legs. This work aims to establish statistical models that allow us to predict the ankle quasi-stiffness and net mechanical work for adults walking on level ground. During the stance phase of walking, the ankle joint propels the body through three distinctive phases of nearly constant stiffness known as the quasi-stiffness of each phase. Using a generic equation for the ankle moment obtained through an inverse dynamics analysis, we identify key independent parameters needed to predict ankle quasi-stiffness and propulsive work and also the functional form of each correlation. These parameters include gait speed, ankle excursion, and subject height and weight. Based on the identified form of the correlation and key variables, we applied linear regression on experimental walking data for 216 gait trials across 26 subjects (speeds from 0.75–2.63 m/s) to obtain statistical models of varying complexity. The most general forms of the statistical models include all the key parameters and have an R2 of 75% to 81% in the prediction of the ankle quasi-stiffnesses and propulsive work. The most specific models include only subject height and weight and could predict the ankle quasi-stiffnesses and work for optimal walking speed with average error of 13% to 30%. We discuss how these models provide a useful framework and foundation for designing subject- and gait-specific prosthetic and exoskeletal devices designed to emulate biological ankle function during level ground walking.
doi:10.1371/journal.pone.0059935
PMCID: PMC3605342  PMID: 23555839
8.  The mechanics and energetics of human walking and running: a joint level perspective 
Humans walk and run at a range of speeds. While steady locomotion at a given speed requires no net mechanical work, moving faster does demand both more positive and negative mechanical work per stride. Is this increased demand met by increasing power output at all lower limb joints or just some of them? Does running rely on different joints for power output than walking? How does this contribute to the metabolic cost of locomotion? This study examined the effects of walking and running speed on lower limb joint mechanics and metabolic cost of transport in humans. Kinematic and kinetic data for 10 participants were collected for a range of walking (0.75, 1.25, 1.75, 2.0 m s−1) and running (2.0, 2.25, 2.75, 3.25 m s−1) speeds. Net metabolic power was measured by indirect calorimetry. Within each gait, there was no difference in the proportion of power contributed by each joint (hip, knee, ankle) to total power across speeds. Changing from walking to running resulted in a significant (p = 0.02) shift in power production from the hip to the ankle which may explain the higher efficiency of running at speeds above 2.0 m s−1 and shed light on a potential mechanism behind the walk–run transition.
doi:10.1098/rsif.2011.0182
PMCID: PMC3223624  PMID: 21613286
locomotion; speed; mechanical power; efficiency; cost of transport
9.  Measuring the Transition Readiness of Youth with Special Healthcare Needs: Validation of the TRAQ—Transition Readiness Assessment Questionnaire 
Journal of Pediatric Psychology  2009;36(2):160-171.
Objective The aim of this study was to develop the Transition Readiness Assessment Questionnaire (TRAQ), a measure of readiness for transition from pediatric to adult healthcare for youth with special health care needs (YSHCN). Methods We administered TRAQ to 192 YSHCN aged 16–26 years in three primary diagnostic categories, conducted factor analysis, and assessed differences in TRAQ scores by age, gender, race, and primary diagnosis type. Results Factor analysis identified two TRAQ domains with high internal consistency: Skills for Self-Management and Skills for Self-Advocacy. Each domain had high internal consistency. In multivariate regression models, older age and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Management, and female gender and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Advocacy. Conclusions Our initial validation study suggests the TRAQ is a useful tool to assess transition readiness in YSHCN and to guide educational interventions by providers to support transition.
doi:10.1093/jpepsy/jsp128
PMCID: PMC3415980  PMID: 20040605
adolescents; chronic illness; health care services
10.  Associations Between Illness Perceptions and Health-Related Quality of Life in Adults with Cystic Fibrosis 
Journal of psychosomatic research  2010;70(2):161-167.
Objective
To examine the relationship between illness perception, health status, and health-related quality of life (HRQOL) in a cohort of adults with cystic fibrosis (CF).
Methods
In the Project on Adult Care in Cystic Fibrosis (PAC-CF), we administered five subscales (Illness Consequences, Illness Coherence, Illness Timeline-Cyclical, Personal Control, Treatment Control) of the Illness Perception Questionnaire-Revised (IPQ-R). Multivariable linear regression analyses explored the associations between illness perception, health status, symptom burden, and physical and psychosocial HRQOL as measured by various domains of the CF Questionnaire-Revised (CFQ-R).
Results
Among the 199 respondents (63% female, mean age 36.8±10.2 years), IPQ-R scores did not differ based on age, gender, or lung function. In multivariable regression models neither clinical characteristics nor physical or psychological symptom burden scores were associated with CFQ-R physical domains. In contrast, higher scores on Illness Consequences were associated with lower psychosocial CFQ-R scores. Higher scores on lllness Coherence and Personal Control scales were associated with higher psychosocial CFQ-R scores.
Conclusion
Adults with CF report a high understanding of their disease, feel that CF has significant consequences, and endorse both personal and treatment control over their outcomes. Illness perceptions did not vary with increased age or worsening disease severity, suggesting that illness perceptions may develop during adolescence. Illness perceptions were associated with psychosocial but not physical aspects of HRQOL. Efforts to modify illness perceptions as part of routine clinical care and counseling may lead to improved quality of life for adults with CF.
doi:10.1016/j.jpsychores.2010.06.005
PMCID: PMC3052880  PMID: 21262419
Cystic fibrosis; quality of life; illness perceptions
11.  Tree Nut Allergy, Egg Allergy, and Asthma in Children 
Clinical pediatrics  2010;50(2):133-139.
Background
Children with food allergies often have concurrent asthma.
Objective
The authors aimed to determine the prevalence of asthma in children with food allergies and the association of specific food allergies with asthma.
Methods
Parental questionnaire data regarding food allergy, corroborated by allergic sensitization were completed for a cohort of 799 children with food allergies. Multivariate regression analysis tested the association between food allergy and reported asthma.
Results
In this cohort, the prevalence of asthma was 45.6%. After adjusting for each food allergy, environmental allergies, and family history of asthma, children with egg allergy (odds ratio [OR] = 2.0; 95% confidence interval [CI] = 1.3–3.2; P < .01) or tree nut allergy (OR = 2.0; 95% CI = 1.1–3.6; P = .02) had significantly greater odds of report of asthma.
Conclusion
There is a high prevalence of asthma in the food-allergic pediatric population. Egg and tree nut allergy are significantly associated with asthma, independent of other risk factors.
doi:10.1177/0009922810384720
PMCID: PMC3070157  PMID: 21098525
asthma; food allergy; food hypersensitivity; nut allergy; nut hypersensitivity; egg allergy; egg hypersensitivity; pediatrics; allergy; asthma epidemiology
12.  Patterns of inhaled corticosteroid use and asthma control in the Childhood Asthma Management Program Continuation Study 
Background
Daily controller medication use is recommended for children with persistent asthma to achieve asthma control.
Objective
To examine patterns of inhaled corticosteroid (ICS) use and asthma control in an observational study of children and adolescents with mild-to-moderate asthma (the Childhood Asthma Management Program Continuation Study).
Methods
We assessed patterns of ICS use during a 12-month period (consistent, intermittent, and none) and asthma control (well controlled vs poorly controlled). Multivariate logistic regression examined the association between pattern of ICS use and asthma control.
Results
Of 914 patients enrolled, 425 were recommended to continue receiving ICS therapy in the Childhood Asthma Management Program Continuation Study. Of these patients, 46% reported consistent ICS use and 20% reported no ICS use during year 1. By year 4, consistent ICS use decreased to 20%, whereas no ICS use increased to 57%; poorly controlled asthma was reported in 18% of encounters. In multivariate models controlling for age, sex, forced expiratory volume in 1 second, and asthma severity assessment, patients reporting consistent ICS use during a 12-month period were more likely to report poor asthma control (odds ratio, 1.6; 95% confidence interval, 1.2–2.1) compared with those reporting no ICS use.
Conclusions
In this observational study of children and adolescents with mild-to-moderate asthma, most did not report continued use of ICS. Patients recommended to continue receiving ICS therapy and reporting consistent ICS use were less likely to report well-controlled asthma even after controlling for markers of asthma severity. Although residual confounding by severity cannot be ruled out, many children and adolescents may not achieve well-controlled asthma despite consistent use of ICS.
doi:10.1016/j.anai.2009.11.004
PMCID: PMC3040975  PMID: 20143642
13.  It pays to have a spring in your step 
A large portion of the mechanical work required for walking comes from muscles and tendons crossing the ankle joint. By storing and releasing elastic energy in the Achilles tendon during each step, humans greatly enhance the efficiency of ankle joint work far beyond what is possible for work performed at the knee and hip joints.
Summary
Humans produce mechanical work at the ankle joint during walking with an efficiency two to six times greater than isolated muscle efficiency.
doi:10.1097/JES.0b013e31819c2df6
PMCID: PMC2821187  PMID: 19550204
gait; locomotion; walking; energetics; exoskeleton; efficiency
14.  High Treatment Burden in Adults with Cystic Fibrosis: Challenges to Disease Self-Management 
Background
More aggressive management of cystic fibrosis (CF), along with the use of new therapies, has led to increasing survival. Thus, the recommended daily treatment regimens for most CF adults are complex and time consuming.
Methods
In the Project on Adult Care in CF (PAC-CF), an ongoing longitudinal study of CF adults, we assessed self-reported daily treatment activities and perceived treatment burden as measured by the CF Questionnaire-Revised (CFQ-R), a disease-specific quality of life measure.
Results
Among the 204 respondents, the median number of daily therapies reported was 7 (IQR 5-9) and the mean reported time spent on treatment activities was 108 minutes per day (SD 58 minutes). Respondents reported a median of 3 inhaled and 3 oral therapies on the day prior to the survey. Only 49% reported performing airway clearance (ACT) on that day. There were no differences in the number of medications or the time to complete therapies based on gender, age or FEV1. The mean CFQ-R treatment burden domain score was 52.3 (SD 22.1), with no significant differences in the treatment burden based on age or FEV1. In a multivariable model controlling for age, gender, and FEV1, using 2 or more nebulized medications and performing ACT for ≥30 minutes were significantly associated with increased treatment burden.
Conclusion
The level of daily treatment activity is high for CF adults regardless of age or disease severity. Increasing number of nebulized therapies and increased ACT time, but not gender, age, or pulmonary function, is associated with higher perceived treatment burden. Efforts to assess the effects of high treatment burden on outcomes such as quality of life are warranted.
doi:10.1016/j.jcf.2008.09.007
PMCID: PMC2680350  PMID: 18952504
Cystic fibrosis; treatment burden; quality of life
15.  Advance Care Planning in Adults with Cystic Fibrosis 
Journal of Palliative Medicine  2008;11(8):1135-1141.
Abstract
Background
Because many patients with cystic fibrosis (CF) continue to survive into adulthood, discussion of end-of-life care decisions between clinicians and patients becomes a crucial part of CF adult care. Advance care planning (ACP) promotes alignment of patient care at the end of life with an individual's goals, however minimal research exists on ACP in CF.
Methods
We surveyed adults enrolled in the Project on Adult Care in Cystic Fibrosis (PAC-CF). We assessed experiences with ACP processes and communication and sought to identify factors associated with completion of an advance directive.
Results
The mean age of respondents (n = 234) was 34 years and the mean forced expiratory volume in 1 second (FEV1) was 64% predicted. Seventy-four percent reported that they had spoken to someone, generally a family member, about the care they would want if they became too ill to make decisions for themselves. However, only 30% reported completing an advance directive. Although 79% reported feeling comfortable talking to their clinician about ACP, only 28% said that their CF clinicians have asked about ACP. Having specific wishes about treatment decisions (odds ratio [OR] 7.8, 95% confidence interval [CI] 1.9–32.1) and reporting that a clinician had discussed ACP (OR 4.4, 95% CI 1.5–12.6) were significantly associated with reporting the completion of an advance directive.
Discussion
Though the majority of adults with CF report thinking about and communicating with family about advance care wishes, only a minority report completing an advance directive. Few adults with CF report being asked about ACP by their clinicians. Formulating specific wishes and discussing ACP with a clinician are strongly associated with completing an advance directive. Efforts to improve clinician communication with CF adults around ACP are needed to ensure that discussion of advance directives becomes an integral component of adult CF care.
doi:10.1089/jpm.2008.0051
PMCID: PMC2982708  PMID: 18980455
16.  A pneumatically powered knee-ankle-foot orthosis (KAFO) with myoelectric activation and inhibition 
Background
The goal of this study was to test the mechanical performance of a prototype knee-ankle-foot orthosis (KAFO) powered by artificial pneumatic muscles during human walking. We had previously built a powered ankle-foot orthosis (AFO) and used it effectively in studies on human motor adaptation, locomotion energetics, and gait rehabilitation. Extending the previous AFO to a KAFO presented additional challenges related to the force-length properties of the artificial pneumatic muscles and the presence of multiple antagonistic artificial pneumatic muscle pairs.
Methods
Three healthy males were fitted with custom KAFOs equipped with artificial pneumatic muscles to power ankle plantar flexion/dorsiflexion and knee extension/flexion. Subjects walked over ground at 1.25 m/s under four conditions without extensive practice: 1) without wearing the orthosis, 2) wearing the orthosis with artificial muscles turned off, 3) wearing the orthosis activated under direct proportional myoelectric control, and 4) wearing the orthosis activated under proportional myoelectric control with flexor inhibition produced by leg extensor muscle activation. We collected joint kinematics, ground reaction forces, electromyography, and orthosis kinetics.
Results
The KAFO produced ~22%–33% of the peak knee flexor moment, ~15%–33% of the peak extensor moment, ~42%–46% of the peak plantar flexor moment, and ~83%–129% of the peak dorsiflexor moment during normal walking. With flexor inhibition produced by leg extensor muscle activation, ankle (Pearson r-value = 0.74 ± 0.04) and knee ( r = 0.95 ± 0.04) joint kinematic profiles were more similar to the without orthosis condition compared to when there was no flexor inhibition (r = 0.49 ± 0.13 for ankle, p = 0.05, and r = 0.90 ± 0.03 for knee, p = 0.17).
Conclusion
The proportional myoelectric control with flexor inhibition allowed for a more normal gait than direct proportional myoelectric control. The current orthosis design provided knee torques smaller than the ankle torques due to the trade-off in torque and range of motion that occurs with artificial pneumatic muscles. Future KAFO designs could incorporate cams, gears, or different actuators to transmit greater torque to the knee.
doi:10.1186/1743-0003-6-23
PMCID: PMC2717982  PMID: 19549338
17.  SELF-REPORTED INVOLVEMENT OF FAMILY MEMBERS IN THE CARE OF ADULTS WITH CF 
Background
Few empirical studies have examined the role of family caregivers in the lives of adults with CF.
Methods
As part of the Project on Adult Care in CF (PAC-CF), an on-going prospective, longitudinal panel study of adults with CF, 119 family members and friends of adults with CF completed a mail survey in which they reported the frequency of help they provide for their family member with CF during routine care, hospitalization, and home IV treatment.
Results
The 119 caregivers were mainly spouses or unmarried partners (56%) and parents (29%). Fifteen percent of caregivers were children, friends, siblings or roommates. Family caregivers for adults with CF report assisting mainly with communication and social support during routine treatment, although one third provide some clinical care on a regular basis. Family caregivers report an increase in assistance during periods of acute illness, such as during a hospitalization and home IV treatment, especially with clinical care tasks.
Conclusions
The depth of commitment required of families of children with CF has been well documented for decades. Our results suggest that the responsibilities of family members diminish only moderately as those with CF reach adulthood.
doi:10.1016/j.jcf.2007.06.002
PMCID: PMC2490602  PMID: 17631424
18.  Self-Reported Physical and Psychological Symptom Burden in Adults with Cystic Fibrosis 
Symptom burden is a key component of health-related quality of life (HRQOL) in patients with cystic fibrosis (CF). In order to examine symptom prevalence and characteristics of adults with CF, we administered the Memorial Symptom Assessment Scale (MSAS), a previously validated measure of symptom burden, to CF patients enrolled in the Project on Adult Care in CF (PAC-CF). The mean age of the 303 respondents (response rate 91%) was 32.8 years (range 19–64); 58% were female, and their mean baseline pulmonary function (FEV1 % predicted) was 69% (SD 28%). The median number of symptoms reported was 10, and there was no difference in the number of symptoms reported based on age, gender, or FEV1. The most prevalent symptoms were cough (94%), shortness of breath (77%), and lack of energy (77%). Lack of energy and irritability caused the highest level of distress. MSAS symptom subscales were only moderately correlated with symptom status domains from existing CF HRQOL measures. Factor analysis led to the development of three distinct MSAS CF-symptom subscales, each with high internal validity. These findings show that adults with CF have a high symptom burden, particularly with respiratory and psychological symptoms, and that the new MSAS CF specific subscales are a reliable measure of symptom distress in the CF population.
doi:10.1016/j.jpainsymman.2007.06.005
PMCID: PMC2430507  PMID: 18215497
Cystic fibrosis; symptom burden; symptom prevalence
19.  Powered lower limb orthoses for gait rehabilitation 
Bodyweight supported treadmill training has become a prominent gait rehabilitation method in leading rehabilitation centers. This type of locomotor training has many functional benefits but the labor costs are considerable. To reduce therapist effort, several groups have developed large robotic devices for assisting treadmill stepping. A complementary approach that has not been adequately explored is to use powered lower limb orthoses for locomotor training. Recent advances in robotic technology have made lightweight powered orthoses feasible and practical. An advantage to using powered orthoses as rehabilitation aids is they allow practice starting, turning, stopping, and avoiding obstacles during overground walking.
PMCID: PMC1414628  PMID: 16568153
locomotion; exoskeleton; locomotor training; bodyweight support; robotics
20.  A PHYSIOLOGIST’S PERSPECTIVE ON ROBOTIC EXOSKELETONS FOR HUMAN LOCOMOTION 
Technological advances in robotic hardware and software have enabled powered exoskeletons to move from science fiction to the real world. The objective of this article is to emphasize two main points for future research. First, the design of future devices could be improved by exploiting biomechanical principles of animal locomotion. Two goals in exoskeleton research could particularly benefit from additional physiological perspective: 1) reduction in the metabolic energy expenditure of the user while wearing the device, and 2) minimization of the power requirements for actuating the exoskeleton. Second, a reciprocal potential exists for robotic exoskeletons to advance our understanding of human locomotor physiology. Experimental data from humans walking and running with robotic exoskeletons could provide important insight into the metabolic cost of locomotion that is impossible to gain with other methods. Given the mutual benefits of collaboration, it is imperative that engineers and physiologists work together in future studies on robotic exoskeletons for human locomotion.
doi:10.1142/S0219843607001138
PMCID: PMC2185037  PMID: 18185840
biomechanics; walking; running; neural control; metabolic cost
21.  Kinematics and muscle activity of individuals with incomplete spinal cord injury during treadmill stepping with and without manual assistance 
Background
Treadmill training with bodyweight support and manual assistance improves walking ability of patients with neurological injury. The purpose of this study was to determine how manual assistance changes muscle activation and kinematic patterns during treadmill training in individuals with incomplete spinal cord injury.
Methods
We tested six volunteers with incomplete spinal cord injury and six volunteers with intact nervous systems. Subjects with spinal cord injury walked on a treadmill at six speeds (0.18–1.07 m/s) with body weight support with and without manual assistance. Healthy subjects walked at the same speeds only with body weight support. We measured electromyographic (EMG) and kinematics in the lower extremities and calculated EMG root mean square (RMS) amplitudes and joint excursions. We performed cross-correlation analyses to compare EMG and kinematic profiles.
Results
Normalized muscle activation amplitudes and profiles in subjects with spinal cord injury were similar for stepping with and without manual assistance (ANOVA, p > 0.05). Muscle activation amplitudes increased with increasing speed (ANOVA, p < 0.05). When comparing spinal cord injury subject EMG data to control subject EMG data, neither the condition with manual assistance nor the condition without manual assistance showed a greater similarity to the control subject data, except for vastus lateralis. The shape and timing of EMG patterns in subjects with spinal cord injury became less similar to controls at faster speeds, especially when walking without manual assistance (ANOVA, p < 0.05). There were no consistent changes in kinematic profiles across spinal cord injury subjects when they were given manual assistance. Knee joint excursion was ~5 degrees greater with manual assistance during swing (ANOVA, p < 0.05). Hip and ankle joint excursions were both ~3 degrees lower with manual assistance during stance (ANOVA, p < 0.05).
Conclusion
Providing manual assistance does not lower EMG amplitudes or alter muscle activation profiles in relatively higher functioning spinal cord injury subjects. One advantage of manual assistance is that it allows spinal cord injury subjects to walk at faster speeds than they could without assistance. Concerns that manual assistance will promote passivity in subjects are unsupported by our findings.
doi:10.1186/1743-0003-4-32
PMCID: PMC2048508  PMID: 17711590
22.  The effects of powered ankle-foot orthoses on joint kinematics and muscle activation during walking in individuals with incomplete spinal cord injury 
Background
Powered lower limb orthoses could reduce therapist labor during gait rehabilitation after neurological injury. However, it is not clear how patients respond to powered assistance during stepping. Patients might allow the orthoses to drive the movement pattern and reduce their muscle activation. The goal of this study was to test the effects of robotic assistance in subjects with incomplete spinal cord injury using pneumatically powered ankle-foot orthoses.
Methods
Five individuals with chronic incomplete spinal cord injury (ASIA C-D) participated in the study. Each subject was fitted with bilateral ankle-foot orthoses equipped with artificial pneumatic muscles to power ankle plantar flexion. Subjects walked on a treadmill with partial bodyweight support at four speeds (0.36, 0.54, 0.72 and 0.89 m/s) under three conditions: without wearing orthoses, wearing orthoses unpowered (passively), and wearing orthoses activated under pushbutton control by a physical therapist. Subjects also attempted a fourth condition wearing orthoses activated under pushbutton control by them. We measured joint angles, electromyography, and orthoses torque assistance.
Results
A therapist quickly learned to activate the artificial pneumatic muscles using the pushbuttons with the appropriate amplitude and timing. The powered orthoses provided ~50% of peak ankle torque. Ankle angle at stance push-off increased when subjects walked with powered orthoses versus when they walked with passive-orthoses (ANOVA, p < 0.05). Ankle muscle activation amplitudes were similar for powered and passive-orthoses conditions except for the soleus (~13% lower for powered condition; p < 0.05).
Two of the five subjects were able to control the orthoses themselves using the pushbuttons. The other three subjects found it too difficult to coordinate pushbutton timing. Orthoses assistance and maximum ankle angle at push-off were smaller when the subject controlled the orthoses compared to when the therapist-controlled the orthoses (p < 0.05). Muscle activation amplitudes were similar between the two powered conditions except for tibialis anterior (~31% lower for therapist-controlled; p < 0.05).
Conclusion
Mechanical assistance from powered ankle-foot orthoses improved ankle push-off kinematics without substantially reducing muscle activation during walking in subjects with incomplete spinal cord injury. These results suggest that robotic plantar flexion assistance could be used during gait rehabilitation without promoting patient passivity.
doi:10.1186/1743-0003-3-3
PMCID: PMC1435761  PMID: 16504172

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