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PURPOSE: Gender-affirming treatment for transgender and nonbinary adolescents has been shown to decrease anxiety, depression, and suicidality, but treatments have medical consequences. Specifically, hormone replacement and pubertal blocking may impact patients' fertility and childbearing capabilities. We interviewed gender diverse adolescents regarding their thoughts on family and fertility. METHODS: We completed semistructured interviews with 23 gender diverse adolescents recruited from the Seattle Children's Gender Clinic. Interviewees included transfeminine, transmasculine, and nonbinary youth. Interviews were recorded, transcribed, and analyzed using Braun and Clarke's theory of thematic analysis, a flexible framework for qualitative analysis. RESULTS: Gender diverse adolescents have myriad views on fertility, but four main themes were identified: (1) an interest in future family, including ideas regarding adoption and biological children; (2) barriers to fertility, including cost and procedure-related dysphoria; (3) factors unique to the developmental stage of adolescents, including the age discordance of making fertility decisions as a teenager and parental influence on decision-making; and (4) suggestions for clinicians approaching fertility counseling with adolescents considering hormone therapy. CONCLUSIONS: Many gender diverse youth asserted an interest in building families, although the process of fertility preservation remains fraught. Relative to other studies, our participants were hopeful, imaginative, and interested in having children. Participants wanted to receive specific counseling on fertility, to receive help navigating the logistics of fertility preservation, and to be listened to when their hopes for children (or no children) were stated. Further research is needed to create care paradigms that address fertility of transgender youth in an affirming, developmentally appropriate manner.
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Preservación de la Fertilidad , Personas Transgénero , Adolescente , Niño , Consejo , Fertilidad , Humanos , Relaciones Padres-HijoRESUMEN
BACKGROUND: Knee osteoarthritis (OA) is prevalent and often associated with meniscal tear. Physical therapy (PT) and exercise regimens are often used to treat OA or meniscal tear, but, to date, few programs have been designed specifically for conservative treatment of meniscal tear with concomitant knee OA. Clinical care and research would be enhanced by a standardized, evidence-based, conservative treatment program and the ability to study the effects of the contextual factors associated with interventions for patients with painful, degenerative meniscal tears in the setting of OA. This paper describes the process of developing both a PT intervention and a home exercise program for a randomized controlled clinical trial that will compare the effectiveness of these interventions for patients with knee pain, meniscal tear and concomitant OA. METHODS: This paper describes the process utilized by an interdisciplinary team of physical therapists, physicians, and researchers to develop and refine a standardized in-clinic PT intervention, and a standardized home exercise program to be carried out without PT supervision. The process was guided in part by Medical Research Council guidance on intervention development. RESULTS: The investigators achieved agreement on an in-clinic PT intervention that included manual therapy, stretching, strengthening, and neuromuscular functional training addressing major impairments in range of motion, musculotendinous length, muscle strength and neuromotor control in the major muscle groups associated with improving knee function. The investigators additionally achieved agreement on a progressive, protocol-based home exercise program (HEP) that addressed the same major muscle groups. The HEP was designed to allow patients to perform and progress the exercises without PT supervision, utilizing minimal equipment and a variety of methods for instruction. DISCUSSION: This multi-faceted in-clinic PT program and standardized HEP provide templates for in-clinic and home-based care for patients with symptomatic degenerative meniscal tear and concomitant OA. These interventions will be tested as part of the Treatment of Meniscal Tear in Osteoarthritis (TeMPO) Trial. TRIAL REGISTRATION: The TeMPO Trial was first registered at clinicaltrials.gov with registration No. NCT03059004 on February 14, 2017. TeMPO was also approved by the Institutional Review Board at Partners HealthCare/Brigham and Women's Hospital.
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Consenso , Medicina Basada en la Evidencia/normas , Terapia por Ejercicio/normas , Servicios de Atención a Domicilio Provisto por Hospital/normas , Osteoartritis de la Rodilla/rehabilitación , Lesiones de Menisco Tibial/rehabilitación , Adulto , Medicina Basada en la Evidencia/métodos , Terapia por Ejercicio/métodos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Osteoartritis de la Rodilla/complicaciones , Grupo de Atención al Paciente/normas , Guías de Práctica Clínica como Asunto , Ensayos Clínicos Controlados Aleatorios como Asunto , Proyectos de Investigación/normas , Lesiones de Menisco Tibial/etiologíaRESUMEN
BACKGROUND: In preparation for a trial of physical therapy (PT) for patients with degenerative meniscal tear and knee osteoarthritis, we conducted a prospective preference assessment -- a methodology for estimating the proportion of eligible subjects who would participate in a hypothetical randomized trial. METHODS: We identified patients seeking care from the practices of five orthopedic surgeons. Patients completed a survey asking about their willingness to participate in a hypothetical trial, their treatment preferences, their knee pain, and demographic variables. RESULTS: We approached 201 eligible patients, of whom 67% (95% confidence interval [CI] 60%, 73%) completed questionnaires. Of these, 24% (95% CI 17%, 31%) were definitely and 39% (95% CI 31%, 47%) were probably willing to participate in the trial. Thirty-three percent (95% CI 23%, 43%) of subjects with no treatment preference were definitely willing to participate as compared to 9% (95% CI 1%, 17%) with treatment preference (pâ¯=â¯.001). Patients with higher educational attainment also stated a greater willingness to participate than those with less education (pâ¯=â¯.06). In multivariable logistic regression analysis, those with no treatment preferences had greater adjusted odds of stating they would definitely participate than those with a defined treatment preference (OR 5.2, 95% CI 1.7, 16.2), while subjects with an associate's degree or greater were more likely to state they would definitely participate than those with less education (OR 3.9, 95% CI 1.1, 14.1). CONCLUSION: In this prospective preference assessment, 63% (95% CI 55%, 71%) of subjects with degenerative meniscal tear expressed willingness to participate in a trial of PT modalities. Individuals with no treatment preferences were more likely to state they would participate than were those with higher education. This methodology can help investigators estimate recruitment rates, anticipate generalizability of the trial sample and create strategies to facilitate enrollment.
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OBJECTIVE: Total knee replacement (TKR) is an effective treatment for end-stage knee osteoarthritis (OA). American racial minorities undergo fewer TKRs than whites. We estimated quality-adjusted life-years (QALYs) lost for African American knee OA patients due to differences in TKR offer, acceptance, and complication rates. METHODS: We used the Osteoarthritis Policy Model, a computer simulation of knee OA, to predict QALY outcomes for African American and white knee OA patients with and without TKR. We estimated per-person QALYs gained from TKR as the difference between QALYs with current TKR use and QALYs when no TKR was performed. We estimated average, per-person QALY losses in African Americans as the difference between QALYs gained with white rates of TKR and QALYs gained with African American rates of TKR. We calculated population-level QALY losses by multiplying per-person QALY losses by the number of persons with advanced knee OA. Finally, we estimated QALYs lost specifically due to lower TKR offer and acceptance rates and higher rates of complications among African American knee OA patients. RESULTS: African American men and women gain 64,100 QALYs from current TKR use. With white offer and complications rates, they would gain an additional 72,000 QALYs. Because these additional gains are unrealized, we call this a loss of 72,000 QALYs. African Americans lose 67,500 QALYs because of lower offer rates, 15,800 QALYs because of lower acceptance rates, and 2,600 QALYs because of higher complication rates. CONCLUSION: African Americans lose 72,000 QALYs due to disparities in TKR offer and complication rates. Programs to decrease disparities in TKR use are urgently needed.
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Artroplastia de Reemplazo de Rodilla/estadística & datos numéricos , Negro o Afroamericano/estadística & datos numéricos , Disparidades en Atención de Salud , Complicaciones Posoperatorias/etnología , Anciano , Artroplastia de Reemplazo de Rodilla/efectos adversos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Modelos Teóricos , Osteoartritis de la Rodilla/cirugía , Aceptación de la Atención de Salud/estadística & datos numéricos , Complicaciones Posoperatorias/etiología , Años de Vida Ajustados por Calidad de VidaRESUMEN
BACKGROUND: Although participation in adaptive sports offers numerous benefits for persons with disabilities, a substantial number of eligible persons do not take part. Previous studies have identified personal and environmental factors that promote or inhibit adaptive sports participation. However, these studies have considered a relatively narrow range of factors. OBJECTIVE: To use qualitative research techniques to identify novel factors that influence participation in a community-based adaptive sports program. DESIGN: Qualitative focus group study. SETTING: Community-based adaptive sports programs affiliated with a rehabilitation hospital network. PARTICIPANTS: Participants were recruited from among 134 adults who registered for the sports program in 2013-2014. Participants with mobility or sensory impairment, absence of cognitive impairment, and English proficiency were included. The 90 former participants with adequate contact information were contacted, and 17 participated in the focus groups. METHODS: Two moderators led each of 3 audio-recorded focus groups using a moderator's guide. We conducted a thematic analysis of transcript data to identify perceived benefits, barriers, and facilitators of participation. RESULTS: Our analysis identified 5 themes: physical well-being and health/safety; interpersonal and social relationships; intrapersonal and beliefs/attitudes; physical environment; and access. Participants experienced participation both as physically beneficial and as transformative in terms of how they view themselves. However, programs drew on limited personal resources and sometimes presented a perceived risk of injury. Finding information about and transportation to programs was a challenge. Participants formed an informal community that modeled what athletes with disabilities are capable of, helping to overcome initial doubts. CONCLUSIONS: To gain the benefits of participation, athletes overcame significant barriers, several of which may be modifiable, including transportation and difficult-to-find information about program offerings. The importance of community and raising awareness of athletes' own abilities suggests a key role for mentorship. Our study contributes to the understanding of experiential aspects that motivate participation in adaptive sports. LEVEL OF EVIDENCE: IV.