Feasibility and reliability of measured glomerular filtration rate with [I125]-iothalamate among young adults with mild-to-moderate cerebral palsy.

Objective: Despite the need, measuring glomerular filtration rate (mGFR) is not routinely performed for adults with cerebral palsy (CP), possibly due to unknown feasibility given the secondary complications of CP. This study aimed to assess the feasibility and reliability of mGFR and explore factors associated with eGFR-mGFR discordance among young adults with mild-to-moderate CP. Methods: This single-center, cross-sectional study included 18- to 40-year-olds with CP gross motor function classification system (GMFCS) I-III. The participants were excluded if they were pregnant/lactating, had cognitive impairments, or had contraindications to mGFR. A routine clinical protocol for mGFR and eGFR was used. mGFR feasibility was assessed based on the number of participants who completed testing. mGFR reliability was assessed using the coefficient of variation (CV) across the four 30 min intervals. The association between age, sex, and GMFCS and the percentage of eGFR-mGFR discordance was assessed. Results: Of the 19 participants enrolled, 18 completed the testing [mean age (SD), 29.9 (7.4) years, n = 10 female participants, n = 10/3/5 for GMFCS I/II/III] and most (n = 15) of the participants had an mGFR >90 mL/min; 14 participants (77.8%) had a CV <20%, 2 had a CV between 20 and 25%, and 2 had a CV >50%. eGFR overestimated mGFR by a median (interquartile range) of approximately 17.5% (2-38%); the full range of mis-estimation was -20.5 to 174.3%. Increasing age and GMFCS levels exhibited notable, but weak-to-modest, associations with a larger eGFR-mGFR discordance. Discussion: Obtaining mGFR was feasible and reasonably reliable within this small sample. eGFR overestimated mGFR by a notable amount, which may be associated with patient-level factors.

"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.

Ableism and Contours of the Attitudinal Environment as Identified by Adults with Long-Term Physical Disabilities: A Qualitative Study.

Adults with physical disabilities experience a continuum of enabling and disabling attitudes in the environment. This study identified where adults with physical disabilities experience the attitudinal environment, the continuum of those attitudes, and how they impact emotional and psychological health and well-being. Focus groups and interviews were conducted in 2019 and 2020 with adults with physical disabilities in southeastern Michigan in the United States. Participants discussed environmental factors that impact healthy aging. From an initial thematic coding of narratives, the attitudinal environment was identified. Transcripts were recoded and analyzed focusing on societal attitudes. Qualitative analyses revealed that participants did not experience societal attitudes as simply positive or negative, and that the contexts in which these attitudes were expressed were not limited to interpersonal interactions. Rather, these attitudes were also experienced in the built environment and through social institutions and organizations and their programs, systems, and structures that provide or deny needed accommodations, resources, and support. The spectrum of overlapping attitudes that participants articulated ranged from understanding and supportive, to not understanding, to being viewed and treated as less than human. Societal structures reflect and influence societal attitudes and have material consequences on the lives of adults with physical disabilities.

Fear, Isolation, and Invisibility during the COVID-19 Pandemic: A Qualitative Study of Adults with Physical Disabilities in Marginalized Communities in Southeastern Michigan in the United States.

This study examines the initial impact of the COVID-19 pandemic on adults with physical disabilities from marginalized communities in southeastern Michigan, one of the early pandemic epicenters in the United States. A purposeful sample of fifteen adults with moderate to severe physical disabilities were recruited, taking part in individual remote semi-structured qualitative interviews, which were recorded, transcribed, and coded for emergent themes using a thematic approach to coding and analysis. Three interrelated, overarching themes emerged: fear, feelings of isolation, and a sense of being invisible. These were identified in the contexts of health and healthcare, home care assistance, and access to resources. The findings help illuminate the experiences of those from socioeconomically and racially marginalized communities, populations that are often "always already" vulnerable. Participant narratives made visible the negative impact of the pandemic on physical and mental health as well as the lack of accommodations available. They showed that participants were faced with a dilemma between engaging in risky behavior to have their needs met or avoiding risk and not have those needs met. This knowledge can expand awareness and appreciation of how social, economic, and political systems impact adults with physical disabilities in lower-income and racially diverse communities and provide guidance in designing future clinical and emergency response policies.

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.