Menopause and Traumatic Brain Injury: A NIDILRR Collaborative Traumatic Brain Injury Model Systems Study.

OBJECTIVE: To examine the experience of menopause symptoms in women with traumatic brain injury (TBI). DESIGN: Cross-sectional descriptive study. SETTING: Five sites of the TBI Model Systems (TBIMS) program. PARTICIPANTS: Participants were 210 women, aged 40-60 years, who were not taking systemic hormones and did not have both ovaries removed: 61 participants were enrolled in the TBIMS, who were at least 2 years post-TBI and living in the community. One hundred forty-nine participants without TBI were recruited from a research registry and the metropolitan Detroit community. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: A checklist comprised of 21 menopause symptoms assessing 4 symptom clusters (vasomotor, somatic, psychological, and cognitive). RESULTS: TBI and non-TBI groups did not significantly differ and showed small effect sizes on vasomotor symptoms. On the remaining symptom clusters, women with TBI showed greater presence and severity of symptoms than women without TBI, as well as fewer differences between premenopausal and postmenopausal women on those symptoms. A profile indicating an additive or potentiating effect of TBI on menopause symptoms was not observed. CONCLUSIONS: Findings support a conceptual model of menopause and TBI indicating that symptoms most closely associated with estrogen decline are similar for women with and without TBI, whereas symptoms that overlap with common TBI sequelae are generally more frequent and severe among these women. Likely because of lower baseline of symptoms premenopause, postmenopausal women without TBI reported more numerous and severe symptoms relative to their premenopausal counterparts without TBI. Overall, it may be that women without TBI experience menopause as more of a "change" of life, whereas women with TBI chronically face significantly more of these symptoms than women without TBI.

THE ASSOCIATION BETWEEN CORTICOSTEROID DOSE AND PAIN REDUCTION FOLLOWING SACROILIAC JOINT INJECTIONS.

OBJECTIVE: Sacroiliac joint (SIJ) mediated back pain has proven therapeutic benefit from fluoroscopically guided SIJ corticosteroid injections. We examined corticosteroid dose and pain relief following fluoroscopically guided SIJ injections to better understand their relationship. DESIGN: Retrospective observational cohort analysis of electronic health record data on 661 patients who received unilateral fluoroscopically guided SIJ intraarticular corticosteroid injection with 40 mg versus 80 mg of methylprednisolone from 2012 and 2019. Patients were injected by fellowship trained proceduralists after diagnosis by board certified physiatrists in an academic physiatry practice. Absolute change in pain scores (post-procedure and first follow up) was modeled using linear regression of methylprednisolone dosage (40 mg vs. 80 mg) controlling for age, sex, BMI, baseline pain scores, and follow-up time. RESULTS: Linear regression indicated that dosage of methylprednisolone, age and BMI were not statistically significantly associated with change in pain scores. Sex approached significance (p = 0.0501) indicating that females may have a lower degree of pain resolution than males. CONCLUSIONS: Practitioners should consider corticosteroid dose when performing these beneficial procedures. This could reduce cost and potential side effects associated with larger doses, while still providing therapeutic benefit. This pilot study can guide future research and dosing guidelines for fluoroscopic spine injections.

Visual aid for pediatric virtual musculoskeletal exams: A Barbie girl in a telehealth world.

BACKGROUND: Telehealth is rapidly advancing, yet musculoskeletal physical examinations pose a unique challenge with limited clinically tested tools. OBJECTIVE: To measure whether visual aid use improves accuracy and efficiency of musculoskeletal exam maneuvers within a mock pediatric telehealth encounter. DESIGN: Randomized controlled trial. SETTING: Mock telehealth encounter. PARTICIPANTS: A total of 30 volunteer dyads of children aged 4-17 years old and their parent/guardian. To be eligible to participate, the parent/guardian was required to speak and read English proficiently and have access to Zoom technology on a personal electronic device. INTERVENTION: The control group received verbal prompts to complete 12 musculoskeletal exam maneuvers. The intervention group had the addition of a Barbie (Mattel) visual aid. MAIN OUTCOME MEASURES: Primary outcomes were accuracy (number of completed maneuvers) and efficiency (total verbal prompts, total time). Secondary outcomes were ratings of comfort using telehealth technology, ease of understanding, and perceived usefulness of the visual aid. Standard multiple regression analysis was employed, with significance defined as a p value <.05. RESULTS: The intervention group completed an average of 11.67 ± 0.7 maneuvers versus 11.27 ± 1.0 in the control group (p = .21), 13:31 ± 4.02 total time (mm:ss) versus 14:47 ± 4:04 (p = .05), and 4.87 ± 4.4 verbal prompts versus 8.40 ± 4.6 (p = .04), respectively. The overall model of group allocation controlling for age was not statistically significant for total maneuvers (p = .255), total time (p = .061) or total verbal prompts (p = .095). However, group allocation significantly predicted total verbal prompts (p = .032), with participants in the intervention group requiring an average of 4.1 fewer prompts. All participants in the intervention group rated the visual aid as 'definitely helpful'. CONCLUSION: Visual aid use improved virtual musculoskeletal exam maneuver ease and efficiency in a pediatric population.

Evaluation of the long-term outcomes of the University of Michigan's Practice-Oriented Research Training (PORT) program.

The University of Michigan created the Practice-Oriented Research Training (PORT) program and implemented it between 2008 and 2018. The PORT program provided research training and funding opportunities for allied healthcare professionals. The program consisted of weekly didactics and group discussion related to topics relevant to developing specific research ideas into projects and funding for a mentored research project for those who submitted a competitive grant application. The goal of this evaluation was to assess the long-term impact of the PORT program on the research careers of the participants. Ninety-two participants (74 staff and 18 faculty) participated in both phases of the program. A mixed-methods approach to evaluation was used; 25 participants who received funding for their research completed surveys, and semi-structured interviews were conducted with eight program participants. In addition, data were collected on participants' publication history. Fifteen out of the 74 staff participants published 31 first-authored papers after participating in PORT. Twelve out of 15 staff participants who published first-authored papers did so for the first time after participating in the PORT program. Results of quantitative and qualitative analyses suggest that the PORT program had positive impacts on both participants and the research community.

Assessing menopause symptoms in women with traumatic brain injury: the development and initial testing of a new scale.

With greater survival rates after catastrophic injury, more women with traumatic brain injury (TBI) are living longer than ever. However, knowledge about this transition in these women is largely unexamined and there are no scales that have been developed to assess the experience of symptoms. To address this gap, we developed and tested a new scale of menopause symptoms in midlife women with TBI. We selected candidate items from two existing measures based on feedback from focus group discussions with seven women with TBI. Twenty candidate items were tested in cognitive interviews with six women with TBI/1 non-TBI. Then, these were field tested with 221 participants (TBI, n = 68; non-TBI, n = 153) recruited from registries. Rasch analysis and convergent validity testing were used to evaluate the new scale. Results of the Rasch analysis indicate that overall, the scale fits well the Rasch model with evidence for unidimensionality. Differential item functioning indicated that the scale performed equally well for women with and without TBI and distinguished pre- and post-menopausal states. Convergent validity was found in the expected directions. These findings support further development of the new scale to understand the experience of menopause symptoms among women with TBI.

Supporting Patient-Centered Pregnancy Counseling in Nephrology Care: A Semistructured Interview Study of Patients and Nephrologists.

Introduction: Individuals with chronic kidney disease (CKD) are at increased risk of adverse pregnancy outcomes and are susceptible to disempowerment and decisional burden when receiving reproductive counseling and considering pregnancy. Nephrologists do not frequently counsel about reproductive health, and no tools exist to support patient-centered reproductive counseling for those with CKD. Methods: A total of 30 patients aged 18 to 45 years with CKD stages 1 to 5 who were assigned female sex at birth and 12 nephrologists from a single academic medical center participated in semistructured qualitative interviews. They were asked about information needs, decision support needs, and facilitators and barriers to reproductive health care and counseling. Thematic analysis was performed. Results: The following 4 main themes were identified: (i) assessing reproductive intentions; (ii) information about reproductive health and kidney disease; (iii) reproductive risk; and (iv) communication and decision-making needs. Patients' reproductive intentions varied over time and shaped the content of information needed from nephrologists. Patients and nephrologists both felt that risk communication could be improved but focused on different aspects to improve the quality of this counseling; nephrologists focused on providing individualized risk estimates and patients focused on balancing risks with benefits and management. Patients desired nephrologists to bring up the topic of reproductive health and counseling in kidney clinic, and this is not frequently or systematically done currently. Conclusion: This work highlights a critical need for more dialog about reproductive health in kidney care, identified differences in what patients and nephrologists think is important in communication and decision-making, and provides an important step in developing patient-centered reproductive counseling tools in nephrology.

"They had the lunch lady coming up to assist": The experiences of menarche and menstrual management for adolescents with physical disabilities.

BACKGROUND: Menarche is a pivotal time in an adolescent's life but can be experienced differently by those with physical disabilities. Parents typically serve as the primary educators and support for their daughters during this time. Little is known about the parent's perspective of their daughter's experience preparing for menarche and learning to manage menses. OBJECTIVE: We sought to understand the parent's perspective of the experience of their daughter with a physical disability around menarche and their preferences for health care provider support. METHODS: Individual semi-structured interviews were conducted with 21 parents of a daughter with a physical disability ages 7-26. Interviews were coded by 2 reviewers using Grounded Theory, with disagreements resolved by consensus. RESULTS: Six themes emerged regarding the parent's perception of the experiences, including 1) variation in emotional responses to menarche, 2) parent's perception of their daughter's experience with menses and menstrual symptoms, 3) cross-section of disability and menstrual management, 4) menstrual management at school, 5) parental knowledge correlating to daughter's preparation for menarche, and 6) desires for health care provider support. CONCLUSIONS: All parents reported that their daughters faced challenges during menarche, ranging from emotional distress to dealing with the inaccessibility of hygiene products. Managing periods at schools was particularly burdensome. Parents who were better educated about what to expect were better able to prepare their daughters, but had difficulties finding informed, supportive providers. Health care providers should provide both anticipatory guidance and holistic, respectful, and equitable options for the management of menstrual symptoms.

Development and pilot test of a pregnancy decision making tool for women with physical disabilities.

OBJECTIVE: Design and pilot test a new decision making tool for women with physical disabilities (impairment of physical function due to chronic conditions) considering pregnancy. DATA SOURCES AND STUDY SETTING: Quantitative surveys and qualitative interviews were collected from participants living in the community. STUDY DESIGN: Clinical guidelines and survey and focus group data about pregnancy informational and decisional needs guided content development. The tool was pilot tested in a 12-week trial with participants with physical disabilities considering or actively planning a pregnancy. Feasibility outcomes were acceptability, implementation, and demand (collected at end of the trial); preliminary efficacy focused on decisional conflict and readiness (baseline, 6 weeks, and end of trial). DATA COLLECTION: Survey data were collected using an online form. One-on-one interviews were conducted to learn more about experience using the tool. PRINCIPAL FINDINGS: Thirty eight participants with mild, moderate, or severe physical disabilities participated. Feasibility outcomes indicated that the tool provided participants with information, guiding questions, and helped them to consider multiple aspects of the decision about pregnancy. Most participants responded positively to the new decision making tool, finding it easy to use and the information balanced. Feedback highlighted opportunity for improvement, such as more specific information, peer stories, and the limitations of a paper format. There was significant linear effect of time, with increased decisional certainty and readiness, values clarity, and decisional support (partial η2 [90% CI] = 0.310 [0.08, 0.46], 0.435 [0.19, 0.60], 0.134 [0, 0.29], 0.178 [0.01, 0.35], respectively). Decisional certainty and readiness had high observed power (96.7% and 99.3%, respectively) with lower observed power for clarity and support (60.6% and 75.1%, respectively). CONCLUSIONS: The new tool shows promise for supporting women with physical disabilities in navigating pregnancy decision making. Future development of complementary strategies to support health care providers will help improve shared decision making and patient-centered care.

Development of a Conceptual Framework of Sexual Well-being for Women with Physical Disability.

BACKGROUND: Women with physical disability (WWPD) experience more sexual dysfunction, are typically less sexually active, and engage in fewer intimate relationships than women without physical disability. Although patient-reported outcome measures can help researchers and providers to meet the needs of this population, current measures fail to reflect the relevant experiences of WWPD. The purposes of this study were to 1) understand the experiences of WWPD related to sexual wellness, 2) identify the gaps in the current Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction, and 3) develop a conceptual framework for the measurement of sexual well-being on which a new supplemental measure will be built. METHODS: WWPD (n = 59) were recruited from an online health registry through a large academic medical center and took part in semistructured focus groups and interviews exploring experiences with sexuality, intimate relationships, sexual function, and sexual and reproductive health care. Interviews were transcribed and coded using an inductive approach to thematic analysis. RESULTS: Participants expressed that their sexual well-being extends beyond simply physical function and includes aspects of their environment, society, and intrapersonal and interpersonal factors. From themes that emerged from the qualitative data, we developed a conceptual framework of sexual well-being, which includes sexual health and sexual self-efficacy. The framework is composed of five constructs that impact sexual health and sexual self-efficacy: physical factors, intrapersonal factors, environmental factors, relationships and partner opportunity, and stigma. CONCLUSIONS: This conceptual framework can be used to develop patient-reported outcome measures items relevant to the experiences of WWPD, facilitate conversations between providers and patients, and identify areas to target for sexual wellness interventions.

Psychometric properties of the spinal cord injury-quality of life (SCI-QOL) Resilience item bank in a sample with spinal cord injury and chronic pain.

PURPOSE: To describe the psychometric properties (e.g., data distribution characteristics, convergent/discriminant validity, internal consistency reliability, and test administration characteristics) of the spinal cord injury quality of life measurement system (SCI-QOL) Resilience item bank delivered as a computer adaptive test (CAT) in a sample of individuals with chronic pain and spinal cord injury (SCI). METHODS: Descriptive statistics were calculated to investigate variable data distribution characteristics. Correlation analyses were conducted for convergent and discriminant validity. Item response theory-derived reliability was calculated for the SCI-QOL Resilience CAT. RESULT: One hundred thirty-three adults with SCI (N = 133; 73.5% male, 26.5% female) were enrolled. Sample mean T score on the SCI-QOL Resilience measure was 48.40, SD = 8.60 (min = 29.4; max = 70.0). The CAT administered between 4 (most common, 41.4% of cases) and 12 (9% of cases) items with the Mean#items = 5.73, SD = 2.45. The SCI-QOL Resilience CAT scores were normally distributed, with very low ceiling (0%) and floor (3%) effects. The SCI-QOL Resilience CAT had a reliability of 0.89, and the mean length of time for respondents to complete the SCI-QOL Resilience CAT was 44.34 s. SCI-QOL Resilience CAT validity was supported by significant moderate correlations with pain acceptance, depressive symptoms, pain catastrophizing, positive affect and well-being, and pain interference (convergent validity) and small non-significant correlations with age, sex, injury level, pain intensity, mobility level, and years since injury (discriminant validity). CONCLUSION: The SCI-QOL Resilience CAT demonstrated good convergent and discriminant validity. The CAT administration characteristics were impressive: With few items (low response burden), the scale achieved good reliability.

Physical Function Recovery Trajectories After Spinal Cord Injury.

OBJECTIVE: To explore trajectories of functional recovery that occur during the first 2 years after spinal cord injury (SCI). DESIGN: Observational cohort study. SETTING: Eight SCI Model System sites. PARTICIPANTS: A total of 479 adults with SCI completed 4 Spinal Cord Injury-Functional Index (SCI-FI) item banks within 4 months of injury and again at 2 weeks, 3, 6, 12, and 24 months after baseline assessment (N=479). INTERVENTION: None. MAIN OUTCOME MEASURES: SCI-FI Basic Mobility/Capacity (C), Fine Motor Function/C, Self-care/C, and Wheelchair Mobility/Assistive Technology (AT) item banks. RESULTS: Growth mixture modeling was used to identify groups with similar trajectory patterns. For the Basic Mobility/C and Wheelchair Mobility/AT domains, models specifying 2 trajectory groups were selected. For both domains, a majority class exhibited average functional levels and gradual improvement, primarily in the first 6 months. A smaller group of individuals made gradual improvements but had greater initial functional limitations. The Self Care/C domain exhibited a similar pattern; however, a third, small class emerged that exhibited substantial improvement in the first 6 months. Finally, for individuals with tetraplegia, trajectories of Fine Motor Function/C scores followed 2 patterns, with individuals reporting generally low initial scores and then making either modest or large improvements. In individual growth curve models, injury/demographic factors predicted initial functional levels but less so regarding rates of recovery. CONCLUSIONS: Trajectories of functional recovery followed a small number of change patterns, although variation around these patterns emerged. During the first 2 years after initial hospitalization, SCI-FI scores showed modest improvements; however, substantial improvements were noted for a small number of individuals with severe limitations in fine motor and self-care function. Future studies should further explore the personal, medical, and environmental characteristics that influence functional trajectories during these first 2 years and beyond.

Development of a new pregnancy informational and decisional needs survey for women with physical disabilities.

BACKGROUND: While the literature on pregnancy and disability is growing, generating important knowledge of barriers to care and health risks, there is limited literature on pregnancy decision-making and informational needs. Such knowledge is critical for the development of interventions to mitigate the challenges women with disabilities and health care providers face in making this important decision. OBJECTIVE: /Hypothesis: Develop a survey of pregnancy decisional and informational needs of women with physical disabilities. METHODS: We developed a conceptual framework that guided item writing, defined the characteristics of the target population, engaged stakeholders with disabilities to collaborate with investigators, and tested the interpretability and relevance of items, and preferred mode of responding (online vs. telephone). A total of 123 women participated in cognitive interviews (N = 13), mode testing (N = 10), or survey data collection (N = 114). RESULTS: Instructions, three screening questions, and 156 items were tested in one round of 17 cognitive interviews; 25 items were deleted, 94 were revised, and 37 items were retained without changes. The final version of the survey included six sub-sections: the experience of making a decision; information about pregnancy and disability; things affecting a decision; knowing what is important; support for making a decision; and working with health care providers. CONCLUSIONS: The overall performance of the survey supported its content validity and utility as a useful way to gather information about the pregnancy decision-making experience and informational needs of women with physical disabilities.

How to Discuss Sexual Health With Girls and Young Women With Spina Bifida: A Practical Guide for the Urologist.

OBJECTIVE: To provide urologists with a practical guide for how to provide sexual health counseling to girls and women with spina bifida. METHODS: The recommendations and research of several sources were synthesized to create this guidance, including clinical guidance from the Spina Bifida Association and American College of Obstetricians, the current literature on the sexual health of girls and women with spina bifida, and the multidisciplinary experience of the authors. RESULTS: Sexual health education should be viewed by urologists as a continuous discussion, starting in early childhood and gradually building through adolescence. Developing a plan for when and how to bring it up, utilizing parents as educational partners, identifying who will provide the detailed one-on-one counseling if not the primary urologist, establishing a referral network for specialized care (eg, adolescent gynecologist, physical therapist, or sex therapist), becoming familiar with how spina bifida impacts sexual health, and being prepared for challenges are key to providing these girls and women with competent sexual health education. Urologists should also screen for abuse at each visit and be familiar with reporting and resources for when abuse is identified. CONCLUSION: This guidance can serve to direct urologists in providing competent sexual health education to girls and women with spina bifida. This will ensure these girls and women receive the basic education they need, and that they can be referred to appropriate sexual health experts as indicated.

"I Tell Them What I Can Feel and How Far My Legs Can Bend": Optimizing Sexual Satisfaction for Women With Spina Bifida.

BACKGROUND: There is a high reported rate of sexual dysfunction among women with spina bifida, but little is known about the etiology of this or how sexual satisfaction could be improved. AIM: To identify, through the words of women with spina bifida, perceived causes of diminished sexual satisfaction and recommendations to optimize partnered sexual encounters. METHODS: In this qualitative study, we conducted semi-structured individual interviews with 22 women with spina bifida (median age 26.5 years, range 16-52 years) who have had a romantic partner. Using Grounded Theory, interviews were independently coded by 3 reviewers. Disagreements were resolved by consensus. OUTCOMES: We identified overlapping themes of issues women experienced during sexual intimacy and strategies they learned to improve sexual encounters. RESULTS: 7 salient themes emerged from the data: (i) fear of rejection with resulting difficulty setting boundaries and the risk of coercion; (ii) conflict between spontaneity and self-care in sexual encounters; (iii) worry about incontinence during sex; (iv) trial and error in learning optimal sexual positions; (v) decreased genital sensation; (vi) safety considerations; and (vii) sharing advice with other women with spina bifida. CLINICAL IMPLICATIONS: As sexual satisfaction is influenced by physical features as well as psychological, interpersonal, and sociocultural factors, optimizing sexual satisfaction of women with spina bifida is best managed with a holistic approach utilizing a biopsychosocial model. STRENGTHS & LIMITATIONS: The sample included women with a diverse range of functional impairments. Women were forthright with their comments and thematic saturation was reached. Recruitment was primarily from a single Midwestern institution, which may have limited sampled perspectives. CONCLUSION: While women with spina bifida encounter challenges during sexual encounters, strategies focused on improving communication with partners and addressing specific physical considerations can potentially enhance their sexual experiences. Streur CS, Schafer CL, Garcia VP, et al. "I Tell Them What I Can Feel and How Far My Legs Can Bend": Optimizing Sexual Satisfaction for Women With Spina Bifida. J Sex Med 2020;17;1694-1704.

Reproductive Health in Women with Physical Disability: A Conceptual Framework for the Development of New Patient-Reported Outcome Measures.

Background: Barriers in the built environment, enduring stereotypes and biases, and limited disability competency of health care providers compromise access to and quality of reproductive health care for women with physical disabilities. One way to improve our understanding of critical factors that drive reproductive health inequity and its impact on access to care is to use patient-reported outcome measures (PROMs) that capture relevant and meaningful information about experience. In this study, we developed a conceptual framework as the foundation for relevant and clinically meaningful patient-reported outcome measures targeting the interface of disability and reproductive health. Materials and Methods: We conducted semistructured focus groups and interviews to assess women's experiences around their reproductive health and contextual factors related to disability. We used deductive and inductive qualitative coding approaches to develop the conceptual framework. Results: Eighty-one women between the ages of 16 and 50 with a self-reported physical disability, defined by an impairment of mobility, participated in 13 focus groups (N = 64) and 17 individual interviews. Five major themes characterized the conceptual framework that emerged-knowledge about reproductive health, communication about reproductive health, relationships, the reproductive health care environment, and self-advocacy/identity-all of which had some relationship with five major reproductive health issues-pregnancy and labor/delivery, periods and menstrual management, contraception, sexuality and sexual functioning, and pelvic examinations. Conclusions: This conceptual framework will serve as a foundation for PROM and guide intervention development to reduce reproductive health inequity and improve reproductive health outcomes of women with physical disabilities.

"He told me it would be extremely selfish of me to even consider [having kids]": The importance of reproductive health to women with spina bifida and the lack of support from their providers.

BACKGROUND: As more women with spina bifida (SB) enter their reproductive years, the number having children is significantly increasing. However, little is known about their understanding of their ability to get pregnant or their experiences in considering, planning, or interacting with providers during a pregnancy. OBJECTIVE: We sought to determine what women have been told and understand about their reproductive health, their attitudes towards having children, and their experiences interacting with providers when seeking reproductive health care. METHODS: In this exploratory study employing qualitative research methods and following Grounded Theory, interviews with women with SB 16 years or older were transcribed verbatim and analyzed by three coders. RESULTS: Interviews of 25 women with SB ages 16-52 (median 26) revealed the following themes about their reproductive health perceptions and experiences: 1) poor understanding of reproductive health and potential, 2) interest in having a family, 3) facing provider's opposition to their reproductive goals, 4) going into pregnancy and delivery unprepared, 5) the importance of provider support for reproductive goals. Five women experienced an unintended pregnancy. CONCLUSIONS: Although having children is important to most women with SB in this study, they report a poor understanding of their reproductive potential with several noting unintended pregnancies. They feel uninformed and unprepared during pregnancy and face discouragement from providers. Those experiencing supportive providers report a more positive experience. This demonstrates the urgent need to educate women with SB about their reproductive health and the providers who care for them how to support and counsel these women.

Comorbidity has no impact on unplanned discharge or functional gains in persons with dysvascular amputation.

OBJECTIVE: To examine how factors associated with infection, organ failure, poor wound healing, or indices of chronic vascular disease are associated with unplanned transfers and functional gains in a population of dysvascular amputees during inpatient rehabilitation. DESIGN: Cross-sectional. SETTING: Inpatient rehabilitation unit at an academic medical centre. PATIENTS: A total of 118 patients with new, dysvascular, lower-extremity, amputation participating in inpatient rehabilitation. METHODS: Logistic regression and indices of change (minimal detectable change; MDC90), standardized response mean and effect size were used to examine the risks of unplanned transfer and functional change. MAIN OUTCOME MEASUREMENTS: Rate of unplanned transfers from rehabilitation, and Functional Independence Measure (FIM). RESULTS: Out of the total of 118 patients 19 had unplanned transfers due to medical complications. Age, creatinine, haemoglobin, white blood cell count, haemodialysis, wound vacuum device use, intravenous antibiotic use, or previous amputations were not independently associated with unplanned transfers, motor FIM change or efficiency. The MDC90 for motor FIM was 17.84, with 21.2% of patients exceeding this value; standardized response mean and effect size were large (1.03 and 1.39, respectively). CONCLUSION: This study suggests that the presence of comorbidities in a population of dysvascular amputees participating in inpatient rehabilitation did not increase the risk of unplanned transfers or affect FIM gains.

Self-report of pain in young people and adults with spastic cerebral palsy: interrater reliability of the revised Face, Legs, Activity, Cry, and Consolability (r-FLACC) scale ratings.

AIM: People with cerebral palsy (CP) are often unable to express pain owing to cognitive or speech impairments. Reports that rely on observation can be inaccurate, because behaviours such as grimacing, common in people with spastic CP, resemble pain expressions. We examined preliminary validity and reliability of the revised Face, Legs, Activity, Cry, and Consolability (r-FLACC) scale in people with spastic CP. METHOD: Forty-eight young people and adults (35 females, 13 males; mean [SD] age 29y 2mo [13y]) were video-recorded during a standard examination, rating their pain (0-10) afterwards. Two raters completed the r-FLACC using the video recordings. Interrater reliability was assessed with an unconditional cross-classified random-effects model and item response theory approach; Pearson correlations measured agreement between raters and participants. RESULTS: Mean (SD) participant (n=48) pain scores were 2.48 (2.5) and mean (SD) r-FLACC scores were 1.46 (1.68). There was moderate agreement between raters (intraclass coefficient 0.41 and 0.57 respectively) but low agreement between participants and raters (r=0.26). There were no significant effects for raters (lay observers, nurses, physicians, and inexperienced raters). INTERPRETATION: Results provide mixed support for the interrater reliability of the r-FLACC in people with spastic CP. WHAT THIS PAPER ADDS: The revised Face, Legs, Activity, Cry, and Consolability (r-FLACC) scale can be reliably used by experts and lay raters for people with spastic cerebral palsy (CP). Support is mixed for interrater reliability of the r-FLACC scale used with people with spastic CP.

The Burden of Traumatic Spinal Cord Injury in the United States: Disability-Adjusted Life Years.

OBJECTIVE: To quantify the burden of traumatic spinal cord injury (SCI) as defined by nonfatal health loss and premature mortality among a large sample of participants over a 44-year period, and estimate the national burden of SCI in the United States for the year 2010. DESIGN: Longitudinal. SETTING: National SCI Model Systems and Shriners Hospitals. PARTICIPANTS: Individuals (N=51,226) were categorized by neurologic level of injury as cervical (n=28,178) or thoracic and below (n=23,048). MAIN OUTCOME MEASURES: The burden of SCI was calculated in years lost due to premature mortality (YLL), years lived with disability (YLD), and disability-adjusted life years (DALY). RESULTS: For those with cervical level injuries, the overall YLLs and YLDs were 253,745 and 445,709, respectively, for an estimated total of 699,454 DALYs. For those with thoracic and below level injuries, the overall YLLs and YLDs were 153,885 and 213,160, respectively, for an estimated total of 367,045 DALYs. Proportionally adjusted DALYs attributable to SCI in 2010 were 445,911. CONCLUSIONS: SCIs accounted for over 1 million years of healthy life lost in a national sample over a 44-year span. We estimated that 445,911 DALYs resulted from SCIs in the US in 2010 alone, placing the national burden of SCIs above other impactful conditions such as human immunodeficiency virus/acquired immune deficiency syndrome. Future investigations may employ DALYs to monitor trends in SCI burden in response to innovations in SCI care and identify subgroups of persons with SCIs for whom tailored interventions might improve DALYs.

The reliability of end of day and ecological momentary assessments of pain and pain interference in individuals with spinal cord injury.

PURPOSE: This study investigated the most efficient means of measuring pain intensity and pain interference comparing ecological momentary assessment (EMA) to end of day (EOD) data, with the highest level of measurement reliability as examined in individuals with spinal cord injury. METHODS: EMA (five times throughout the day) and EOD ratings of pain and pain interference were collected over a 7-day period. Multilevel models were used to examine the reliability for both EOD and EMA assessments in order to determine the amount of variability in these assessments over the course of a week or the day, and a multilevel version of the Spearman-Brown Prophecy formula was used to estimate values for reliability. RESULTS: Findings indicate the minimum of number of EOD and EMA assessments needed to achieve different levels of reliability ("adequate" > 0.70, "good" > 0.80 and excellent > 0.90). In addition, the time of day (either morning, midday or evening) did not impact the estimated reliability for the EMA assessments. CONCLUSIONS: These findings can help researchers and clinician balance the cost/benefit tradeoffs of these different types of assessments by providing specific cutoffs for the numbers of each type of assessment that are needed to achieve excellent reliability.