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.

Human-centered design of a novel soft exosuit for post-stroke gait rehabilitation.

BACKGROUND: Stroke remains a major cause of long-term adult disability in the United States, necessitating the need for effective rehabilitation strategies for post-stroke gait impairments. Despite advancements in post-stroke care, existing rehabilitation often falls short, prompting the development of devices like robots and exoskeletons. However, these technologies often lack crucial input from end-users, such as clinicians, patients, and caregivers, hindering their clinical utility. Employing a human-centered design approach can enhance the design process and address user-specific needs. OBJECTIVE: To establish a proof-of-concept of the human-centered design approach by refining the NewGait® exosuit device for post-stroke gait rehabilitation. METHODS: Using iterative design sprints, the research focused on understanding the perspectives of clinicians, stroke survivors, and caregivers. Two design sprints were conducted, including empathy interviews at the beginning of the design sprint to integrate end-users' insights. After each design sprint, the NewGait device underwent refinements based on emerging issues and recommendations. The final prototype underwent mechanical testing for durability, biomechanical simulation testing for clinical feasibility, and a system usability evaluation, where the new stroke-specific NewGait device was compared with the original NewGait device and a commercial product, Theratogs®. RESULTS: Affinity mapping from the design sprints identified crucial categories for stakeholder adoption, including fit for females, ease of donning and doffing, and usability during barefoot walking. To address these issues, a system redesign was implemented within weeks, incorporating features like a loop-backed neoprene, a novel closure mechanism for the shoulder harness, and a hook-and-loop design for the waist belt. Additional improvements included reconstructing anchors with rigid hook materials and replacing latex elastic bands with non-latex silicone-based bands for enhanced durability. Further, changes to the dorsiflexion anchor were made to allow for barefoot walking. Mechanical testing revealed a remarkable 10-fold increase in durability, enduring 500,000 cycles without notable degradation. Biomechanical simulation established the modularity of the NewGait device and indicated that it could be configured to assist or resist different muscles during walking. Usability testing indicated superior performance of the stroke-specific NewGait device, scoring 84.3 on the system usability scale compared to 62.7 for the original NewGait device and 46.9 for Theratogs. CONCLUSION: This study successfully establishes the proof-of-concept for a human-centered design approach using design sprints to rapidly develop a stroke-specific gait rehabilitation system. Future research should focus on evaluating the clinical efficacy and effectiveness of the NewGait device for post-stroke rehabilitation.

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.

Creating a tool to understand university students' experiences regarding inappropriate, disrespectful, and coercive (IDC) healthcare interactions.

Objective: The purpose of this study was to develop a survey tool to capture inappropriate, disrespectful, and coercive (IDC) interactions with healthcare providers among a diverse sample of university students. Participants: Participants were university students at one large Midwestern public university. Methods: An exploratory qualitative approach was used to create a survey tool to capture IDC interactions. Results: In Phase I, 9 focus group discussions (FGDs) and 3 individual interviews were conducted with a total of 38 participants. In Phase II, 18 participants completed cognitive interviews. Themes across all FGDs included: (1) communication; (2) respect for identity; (3) institutional practices; (4) power imbalances; and (5) lack of patient education and empowerment. Queer participants discussed unique considerations of how queer identity influences one's IDC healthcare experiences. Conclusions: This study resulted in the development of a 64-70 item tool, the IDC Survey, to measure the prevalence and characteristics of IDC healthcare interactions.

"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.

Greener on the other side? an analysis of the association between residential greenspace and psychological well-being among people living with spinal cord injury in the United States.

STUDY DESIGN: Secondary analysis of cross-sectional data from a multisite survey study. OBJECTIVES: To describe associations between residential greenspace and psychological well-being among adults living with chronic spinal cord injury (SCI). SETTING: Community. METHODS: Participants were from the Spinal Cord Injury-Quality of Life (SCI-QOL) Calibration Study (N = 313). Geographic Information Systems (GIS) analysis was used to define five- and half-mile buffer areas around participants' residential addresses to represent community and neighborhood environments, respectively, and to create measures of natural and developed open greenspace. Associations of greenspace measures with two SCI-QOL psychological well-being domains (positive affect and depressive symptoms) were modeled using ordinary least squares (OLS) regression, adjusted for demographic, injury-related, and community socioeconomic characteristics. RESULTS: People living in a community with a moderate amount of natural greenspace reported less positive affect and more depressive symptoms compared to people living in a community with low natural greenspace. At the neighborhood level, a moderate amount of developed open space was associated with less positive affect and more depressive symptoms than a low amount of developed open space. CONCLUSIONS: Contrary to expectations, residential greenspace had a negative relationship with psychological well-being in this sample of adults with SCI. Understanding how and why natural spaces are associated with quality of life for people with mobility disabilities can influence public policy and urban planning designs to ensure that residential greenspaces are accessible and beneficial to all.

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.

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.

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.

Patient and Provider-Reported Satisfaction of Cancer Rehabilitation Telemedicine Visits During the COVID-19 Pandemic.

INTRODUCTION: The coronavirus disease 2019 (COVID-19) pandemic has accelerated the growth of telemedicine services across the United States. In this study, we examined cancer rehabilitation patient and physician satisfaction with telemedicine visits. We also sought to evaluate the types of provider services that are given during telemedicine visits. OBJECTIVE: To assess overall patient and provider satisfaction with telemedicine visits and explore whether satisfaction varied by contact method (phone or video) and encounter type (new problem, worsening problem, stable/improving problem). DESIGN: Prospective survey study. SETTING: Cancer rehabilitation program at an academic medical center. PARTICIPANTS: Three cancer rehabilitation providers and 155 unique patients participated in the study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Provider and patient satisfaction measured by customized surveys. RESULTS: One hundred eighty-four encounters with 169 unique patients were scheduled. Of these, 14 were new visits and 170 were follow-up visits. Eighteen encounters (9.8%) were either no shows or rescheduled, making for 166 encounters with 155 unique patients. Patient and provider responses comprised the following: 94.8% of patient responses reported "quite a bit" or "very much" for the telemedicine visit being a good experience; 63.1% of patient responses reported "quite a bit" or "very much" for interest in using telemedicine visits in the future; and 83.9% of provider responses reported "quite a bit" or "very much" for the patient's main problem being addressed by the visit. Providers were more likely to prefer an in-person visit for a new or worsening problem versus a stable/improving problem. The most common services provided were medication prescription/titration and education/counseling. The least common services provided were making of new diagnoses, ordering interventional procedures, and making referrals. CONCLUSION: Telemedicine visits were well received by both patients and providers in a cancer rehabilitation medicine clinic setting. However, in the case of a new or worsening problem, satisfaction declined. These data support that telemedicine visits should be considered essential as part of comprehensive cancer rehabilitation care, especially during a public health crisis.

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.

Differences among participants' response to a wellness intervention for individuals with spinal cord injuries.

BACKGROUND: Individuals with spinal cord injuries (SCI) often struggle with lifestyle adjustment following injury. Effective wellness interventions may aid in improving quality of life; however, treatment response heterogeneity is a concern for behavioral interventions. OBJECTIVE: To identify differences among adults with SCI who were responders and non-responders in a wellness intervention. METHODS: There were 29 persons with SCI who received a wellness intervention. Participants engaged in six in-person workshops over a 3-month period, led by wellness experts with peer mentors available. Individual intervention participant change was compared to the mean among control group participants target outcomes variables (i.e., satisfaction with life, self-efficacy for health practices, secondary conditions, health promoting behaviors, and perceived stress) to classify responders versus non-responders. RESULTS: Of the 29 participants, 18 who completed the intervention were classified as responders and 11 were non-responders. The mean age was 43.2 ±â€¯11.2 years, and years post-injury were 12.0 ±â€¯9.8. Decision tree regression analysis for demographic variables and injury characteristics showed that single/divorced participants were more likely to not respond to the intervention (52%), compared to married participants (17%). Further, participants who were single/divorced and ≤50 years old were more likely to not respond to the intervention (62%) than those who were older (25%). CONCLUSIONS: Single/divorced individuals with SCI may respond differently to behavioral wellness interventions than married individuals. Additionally, the effects of age on treatment response in behavioral interventions should be further examined. Identifying non-modifiable factors related to response heterogeneity may help guide the creation of tailored interventions specific to patient characteristics.

Well on wheels intervention: Satisfaction with life and health for adults with spinal cord injuries.

Objective/Background: To examine how demographic and injury characteristics identify satisfaction with life (SWL), and assess the differential effects of a wellness intervention by baseline SWL groups.Design: Baseline and longitudinal analysis of a randomized controlled pilot intervention using decision tree regression and linear mixed models.Setting: Community based.Participants: Seventy-two individuals with spinal cord injury (SCI) were randomized to an intervention group (n = 39) or control group (n = 33). Participants were aged 44.1 ± 13.0 years and 13.1 ± 10.6 years post-injury. Most participants were male (n = 50; 69.4%) and had paraplegia (n = 38; 52.7%). Participants were classified as high versus low SWL at baseline using a cutoff score of 20.Interventions: The intervention aimed to increase self-efficacy, and in turn, increase engagement in health-promoting behaviors related to SWL. Six 4-hour in-person workshops were conducted over a 3-month period led by experts and peer-mentors who were available for support.Outcome measure(s): Self-efficacy for health practices, secondary condition severity, health-promoting behaviors, perceived stress, and SWL.Results: At baseline, participants with low SWL were recently injured (<4.5 years), while persons with high SWL were married and younger (<49 years old). Intervention participants with low SWL at baseline significantly improved SWL over time compared to those with high SWL (P = 0.02).Conclusion: Certain injury and demographic characteristics were associated with SWL, and intervention participants with low SWL at baseline improved their SWL over 2 years. Healthcare providers should consider time post-injury, marital status, and age in identifying individuals at risk for low SWL that may benefit from wellness interventions.