"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.

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.

"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.

Medicate or Meditate? Greater Pain Acceptance is Related to Lower Pain Medication Use in Persons With Chronic Pain and Spinal Cord Injury.

OBJECTIVES: There is little information about whether use of pain self-management skills that are common targets of psychosocial interventions for pain are associated with reduced reliance on pain medications. The aim of this study was to test whether higher chronic pain acceptance, which is a readily modified pain self-management approach, is related to lower use of pain medications (eg, opioid medications, and gabapentinoids) in a sample with chronic pain and spinal cord injury (SCI). MATERIALS AND METHODS: This is a cross-sectional survey study of pain medication use, pain severity and distribution (Brief Pain Inventory [BPI]), depressive symptoms (Patient Health Questionnaire-9 [PHQ-9]), and chronic pain acceptance (Chronic Pain Acceptance Questionnaire [CPAQ]) administered to a sample of 120 adults with chronic pain and SCI. RESULTS: Regression results indicated that, above and beyond the effects of pain intensity, pain distribution, and depressive symptoms, higher pain acceptance was related to lower use of all types of pain medications, and lower odds of using opioid medications or gabapentinoids. Pain intensity was not related to pain medication use, but greater pain distribution was related to using more pain medications in general and to greater odds of using gabapentinoids. DISCUSSION: Findings from this study indicate that those with chronic pain and SCI who have a more accepting orientation to pain are less reliant on pain medications, and thereby experience lower risks associated with medication consumption. Longitudinal, daily process, and clinical trial studies are needed to better understand the association between pain acceptance and pain medication consumption.

The Effects of Local Anesthesia Administration on Pain Experience During Interventional Spine Procedures: A Prospective Controlled Trial.

OBJECTIVE: It has been postulated that local anesthetic administration may be the most painful part of interventional spine procedures. Despite this, there is a lack of evidence supporting the commonly used traditional technique of anesthetic delivery as part of these procedures. This study tested three hypotheses: 1) alternative method of local anesthesia injection is superior to the traditional method; 2) using the traditional method of injection is not superior to using no local anesthetic; and 3) treatment needle size, anesthetic injection technique, and sedation are associated with pain experienced during procedures. DESIGN: Prospective, multicenter clinical trial of 127 participants who underwent elective bilateral symmetric interventional spine procedures in outpatient spine clinics. METHODS: Primary outcomes were pain scores during and after procedures to examine the influence of anesthetic injection method and treatment needle gauge on pain experience using linear mixed model regression analysis. A post-hoc comparison of estimated marginal mean pain scores was completed on both anesthetic injection method and treatment needle gauge. CONCLUSIONS: The alternative method was superior (P < 0.05) to the traditional method on post procedural pain scores. Injecting local anesthetic with the traditional or alternative method was not superior to using no local anesthetic. Treatment needle size, pain at one inch of treatment needle insertion, and baseline pain were all significantly (P < 0.05) associated with overall procedural pain. Further studies are needed optimize and justify local anesthetic injections for these procedures.

Describing quality of life and psychosocial outcomes after traumatic brain injury.

OBJECTIVE: To describe the quality of life (QOL) and psychosocial outcomes of a sample of adults with traumatic brain injury in 50 community dwelling adults with traumatic brain injury and examine the associations among these variables. DESIGN: Cross-sectional. RESULTS: Mean QOL rating was low average. Standardized measures had acceptable internal reliability and normal distributions in this sample. Subjects had significantly lower QOL and social support, higher negative affect, and similar positive affect and spirituality compared with standardization and other nondisabled samples. They also had a significantly higher level of community integration than other traumatic brain injury samples. Regression analyses suggested that social support, community integration, and positive affect make a unique and significant contribution to the QOL variance with R of 0.492. The addition of spirituality reduced their respective unique variance, reducing positive affect to nonsignificant levels due to their high intercorrelation. CONCLUSIONS: Findings suggest that this sample experiences a wide range of QOL. Factors significantly associated with good QOL include community integration, positive affect, and social support; demographic variables had virtually no association with QOL. Evaluation of the sample's response to standardized scales not designed for a traumatic brain injury population support their use in similar QOL investigations.