scholarly journals Longitudinal Use of the Consolidated Framework for Implementation Research to Evaluate the Creation of a Rural Center of Excellence in Transgender Health

2020 ◽  
Author(s):  
Pamela Jane Tinc ◽  
Christopher Wolf-Gould ◽  
Carolyn Wolf-Gould ◽  
Anne Gadomski

Abstract BackgroundTransgender people face numerous barriers to accessing care, particularly in rural settings. Transportation, travel time, a lack of providers offering transgender care, and discrimination all contribute to these barriers. The Gender Wellness Center was established to fill a gap in rural transgender care, and was subsequently awarded a Robert Wood Johnson Foundation grant to establish a Center of Excellence. This study examines the implementation of the Center of Excellence, a complex intervention, over the course of 18 months.MethodsThe Consolidated Framework for Implementation Research was used to develop baseline and follow-up surveys. These were distributed to members of the core implementation team at the Gender Wellness Center at the midpoint and conclusion of the Robert Wood Johnson Foundation grant. Responses were largely open-ended and analyzed qualitatively.ResultsResults are presented in terms of Consolidated Framework domains and constructs, as well as the relative outlook (positive or negative) of implementation. Overall, there were improvements over time, with more encouraging feedback and examples of success at follow-up. Though true, organizational culture and individual beliefs about the provision of transgender care challenged implementation of the Center of Excellence throughout the project.ConclusionsThis study highlights the importance of organizational culture on implementation efforts, as well as the need for complex, multi-faceted interventions to overcome such challenges in order to improve care for marginalized populations.Trial registrationNot applicable

2020 ◽  
Author(s):  
Pamela Jane Tinc ◽  
Christopher Wolf-Gould ◽  
Carolyn Wolf-Gould ◽  
Anne Gadomski

Abstract Background: Transgender people face numerous barriers to accessing care, particularly in rural settings. Transportation, travel time, a lack of providers offering transgender care, and discrimination all contribute to these barriers. The Gender Wellness Center was established to fill a gap in rural transgender care, and was subsequently awarded a Robert Wood Johnson Foundation grant to establish a Center of Excellence. This study examines the implementation of the Center of Excellence, a complex intervention, over the course of 18 months. Methods: The Consolidated Framework for Implementation Research was used to develop baseline and follow-up surveys. These were distributed to members of the core implementation team at the Gender Wellness Center at the midpoint and conclusion of the Robert Wood Johnson Foundation grant. Responses were largely open-ended and analyzed qualitatively. Results: Results are presented in terms of Consolidated Framework domains and constructs, as well as the relative outlook (positive or negative) of implementation. Overall, there were improvements over time, with more encouraging feedback and examples of success at follow-up. Though true, organizational culture and individual beliefs about the provision of transgender care challenged implementation of the Center of Excellence throughout the project. Conclusions: This study highlights the importance of organizational culture on implementation efforts, as well as the need for complex, multi-faceted interventions to overcome such challenges in order to improve care for marginalized populations. Trial registration: Not applicable


Author(s):  
Pamela J. Tinc ◽  
Christopher Wolf-Gould ◽  
Carolyn Wolf-Gould ◽  
Anne Gadomski

Background: Transgender people face numerous barriers to accessing care, particularly in rural settings. Transportation, travel time, a lack of providers offering transgender care, and discrimination all contribute to these barriers. The Gender Wellness Center was established in New York State, USA, to fill a gap in rural transgender care and was subsequently awarded a Robert Wood Johnson Foundation grant to establish a Center of Excellence. This study examined the implementation of the Center of Excellence, a complex intervention, to assess barriers and facilitators to implementation over 18 months. Methods: The Consolidated Framework for Implementation Research (CFIR) was used to develop baseline and follow-up surveys. These were distributed to members of the core implementation team at the Gender Wellness Center at the midpoint and conclusion of the Robert Wood Johnson Foundation grant. Responses were largely open-ended and analyzed qualitatively. Results: Results are presented in terms of CFIR domains and constructs, as well as the relative outlook (positive or negative) of implementation. Overall, there were improvements over time, with more encouraging feedback and examples of success at follow-up. Though true, organizational culture and individual beliefs about the provision of transgender care challenged implementation of the Center of Excellence throughout the project. Conclusions: This study highlights the importance of organizational culture on implementation efforts, as well as the need for complex, multifaceted interventions to overcome such challenges in order to improve care for marginalized populations.


Author(s):  
Georgina E. Sellyn ◽  
Alan R. Tang ◽  
Shilin Zhao ◽  
Madeleine Sherburn ◽  
Rachel Pellegrino ◽  
...  

OBJECTIVEThe authors’ previously published work validated the Chiari Health Index for Pediatrics (CHIP), a new instrument for measuring health-related quality of life (HRQOL) for pediatric Chiari malformation type I (CM-I) patients. In this study, the authors further evaluated the CHIP to assess HRQOL changes over time and correlate changes in HRQOL to changes in symptomatology and radiological factors in CM-I patients who undergo surgical intervention. Strong HRQOL evaluation instruments are currently lacking for pediatric CM-I patients, creating the need for a standardized HRQOL instrument for this patient population. This study serves as the first analysis of the CHIP instrument’s effectiveness in measuring short-term HRQOL changes in pediatric CM-I patients and can be a useful tool in future CM-I HRQOL studies.METHODSThe authors evaluated prospectively collected CHIP scores and clinical factors of surgical intervention in patients younger than 18 years. To be included, patients completed a baseline CHIP captured during the preoperative visit, and at least 1 follow-up CHIP administered postoperatively. CHIP has 2 domains (physical and psychosocial) comprising 4 components, the 3 physical components of pain frequency, pain severity, and nonpain symptoms, and a single psychosocial component. Each CHIP category is scored on a scale, with 0 indicating absent and 1 indicating present, with higher scores indicating better HRQOL. Wilcoxon paired tests, Spearman correlations, and linear regression models were used to evaluate and correlate HRQOL, symptomatology, and radiographic factors.RESULTSSixty-three patients made up the analysis cohort (92% Caucasian, 52% female, mean age 11.8 years, average follow-up time 15.4 months). Dural augmentation was performed in 92% of patients. Of the 63 patients, 48 reported preoperative symptoms and 42 had a preoperative syrinx. From baseline, overall CHIP scores significantly improved over time (from 0.71 to 0.78, p < 0.001). Significant improvement in CHIP scores was seen in patients presenting at baseline with neck/back pain (p = 0.015) and headaches (p < 0.001) and in patients with extremity numbness trending at p = 0.064. Patients with syringomyelia were found to have improvement in CHIP scores over time (0.75 to 0.82, p < 0.001), as well as significant improvement in all 4 components. Additionally, improved CHIP scores were found to be significantly associated with age in patients with cervical (p = 0.009) or thoracic (p = 0.011) syrinxes.CONCLUSIONSThe study data show that the CHIP is an effective instrument for measuring HRQOL over time. Additionally, the CHIP was found to be significantly correlated to changes in symptomatology, a finding indicating that this instrument is a clinically valuable tool for the management of CM-I.


BJS Open ◽  
2021 ◽  
Vol 5 (Supplement_1) ◽  
Author(s):  
Chan Hee Koh ◽  
Danyal Z Khan ◽  
Ronneil Digpal ◽  
Hugo Layard Horsfall ◽  
Hani J Marcus ◽  
...  

Abstract Introduction The clinical practice and research in the diagnosis and management of Cushing’s disease remains heterogeneous and challenging to this day. We sought to establish the characteristics of Cushing’s disease, and the trends in diagnosis, management and reporting in this field. Methods Searches of PubMed and Embase were conducted. Study protocol was registered a-priori. Random-effects analyses were conducted to establish numerical estimates. Results Our screening returned 159 papers. The average age of adult patients with Cushing’s disease was 39.3, and 13.6 for children. The male:female ratio was 1:3. 8% of patients had undergone previous transsphenoidal resection. The ratio of macroadenomas: microadenomas:imaging-undetectable adenomas was 18:53:29. The most commonly reported preoperative biochemical investigations were serum cortisol (average 26.4µg/dL) and ACTH (77.5pg/dL). Postoperative cortisol was most frequently used to define remission (74.8%), most commonly with threshold of 5µg/dL (44.8%). Average remission rates were 77.8% with recurrence rate of 13.9%. Median follow-up was 38 months. Majority of papers reported age (81.9%) and sex (79.4%). Only 56.6% reported whether their patients had previous pituitary surgery. 45.3% reported whether their adenomas were macroadenoma, microadenoma or undetectable. Only 24.1% reported preoperative cortisol, and this did not improve over time. 60.4% reported numerical thresholds for cortisol in defining remission, and this improved significantly over time (p = 0.004). Visual inspection of bubbleplots showed increasing preference for threshold of 5µg/dL. 70.4% reported the length of follow up. Conclusion We quantified the characteristics of Cushing’s disease, and analysed the trends in investigation and reporting. This review may help to inform future efforts in forming guidelines for research and clinical practice.


2020 ◽  
Vol 32 (S1) ◽  
pp. 83-83
Author(s):  
Maria J. Marques ◽  
Bob Woods ◽  
Eva Y.L. Tan ◽  
Marjolein de Vugt ◽  
Frans Verhey ◽  
...  

INTRODUCTIONRelationship quality (RQ) in dyads of persons with dementia and their family carers is important both as a clinical outcome and as a determinant of health and quality of life. In previous work we studied RQ using baseline data of a large-scale European longitudinal study on timely access to and use of community formal services in dementia (EU-JPND Acticare). We concluded that neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad, which were less favourable when reported by family carers. This and other associations (e.g. between carer-rated RQ and sense of coherence) were cautiously interpreted, in the context of a cross-sectional analysis.OBJECTIVESTo analyse how carer-reported RQ varies over time and to examine its most important influencing factors.METHODSWe present preliminary longitudinal analyses from the Actifcare cohort study of 451 community-dwelling persons with dementia and their primary carers in eight European countries (12-month follow-up). Comprehensive assessments included the Positive Affect Index (PAI) to assess RQ, persons with dementia’s neuropsychiatric symptoms, persons with dementia and carers’ unmet needs, carers’ anxiety and depression, social support, sense of coherence and stress.RESULTSCarers’ mean PAI scores decreased over the 12 -month period. The person with dementia neuropsychiatric symptoms and unmet needs, and carers’ perceived social support were significant predictors of carers’ RQ change.DISCUSSION AND CONCLUSIONWe analysed carer-reported RQ variation over time and predictors in a large European sample of persons with dementia and their family carers. As expected, RQ decreased over the oneyear follow-up period as the disease progressed. Its main predictors in this sample (neuropsychiatric symptoms and the person’s unmet needs, together with carers’ social support) can all influence the impact that caregiving has on the carer and on how time and energy-consuming caregiving is. The role of increased clinical symptoms (also affecting communication difficulties), together with carers’ exhaustion, must be equated. Overall, these results may help us to tailor interventions addressing RQ and potentially improve dementia outcomes.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 414-414
Author(s):  
Anna Huang ◽  
Kristen Wroblewski ◽  
Ashwin Kotwal ◽  
Linda Waite ◽  
Martha McClintock ◽  
...  

Abstract The classical senses (vision, hearing, touch, taste, and smell) play a key role in social function by allowing interaction and communication. We assessed whether sensory impairment across all 5 modalities (global sensory impairment [GSI]) was associated with social function in older adults. Sensory function was measured in 3,005 home-dwelling older U.S. adults at baseline in the National Social Life, Health, and Aging Project and GSI, a validated measure, was calculated. Social network size and kin composition, number of close friends, and social engagement were assessed at baseline and 5- and 10-year follow-up. Ordinal logistic regression and mixed effects ordinal logistic regression analyzed cross-sectional and longitudinal relationships respectively, controlling for demographics, physical/mental health, disability, and cognitive function (at baseline). Adults with worse GSI had smaller networks (β=-0.159, p=0.021), fewer close friends (β=-0.262, p=0.003) and lower engagement (β=-0.252, p=0.006) at baseline, relationships that persisted at 5 and 10 year follow-up. Men, older people, African-Americans, and those with less education, fewer assets, poor mental health, worse cognitive function, and more disability had worse GSI. Men and those with fewer assets, worse cognitive function, and less education had smaller networks and lower engagement. African-American and Hispanic individuals had smaller networks and fewer close friends, but more engagement. Older respondents also had more engagement. In summary, GSI independently predicts smaller social networks, fewer close friends, and lower social engagement over time, suggesting that sensory decline results in decreased social function. Thus, rehabilitating multisensory impairment may be a strategy to enhance social function as people age.


2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 318.1-318
Author(s):  
D. Santos Oliveira ◽  
A. Martins ◽  
F. R. Martins ◽  
F. Oliveira Pinheiro ◽  
M. Rato ◽  
...  

Background:Anti-tumour necrosis factor alpha (anti-TNF-α) therapy is commonly used to treat inflammatory conditions such as rheumatoid arthritis (RA). Autoantibodies namely antinuclear antibodies (ANA) induced by these treatments are well established. However, anti-TNF-α-induced systemic lupus erythematosus (SLE) is rarely described and its incidence is yet unknown.Objectives:This study aimed to determine the prevalence of ANA seroconversion and to characterize the development of SLE induced by anti-TNF-α therapy in patients with RA over time.Methods:An observational retrospective cohort study was conducted with at least one year of follow-up. Patients with diagnosis of RA, according to American College of Rheumatology criteria (ACR), and registered on Rheumatic Diseases Portuguese Register (Reuma.pt) who started their first anti-TNFα between 2003 and 2019 were included. Patients with positive ANA (titer ≥100) and/or positive double-strand DNA (dsDNA) antibodies and/or with a diagnosis of SLE at their first visit were excluded. Demographic, clinical and laboratory data were obtained by consulting Reuma.pt. As there are no recognized criteria for drug-induced SLE, the diagnosis of SLE induced by anti-TNF-α was considered if there is a temporal relationship between clinical manifestations and anti-TNF-α-therapy, the presence of at least 1 serologic ACR criteria (ANA or anti-dsDNA) and at least 1 nonserologic ACR criteria (arthritis, serositis, hematologic disorder or malar rash) [1]. Continuous variables are presented with mean, standard deviation, median, quartile 1 and quartile 3. Categorical variables are presented with absolute and relative frequencies.Results:A total of 211 patients (mean age of 49.9±10.9 years old; 84.4% female) were included with a median follow-up time of 6 [3-14] years. We found a seroconversion rate for ANA of 75.4% (n=159) with median treatment duration of 31 [8.5-70.5] months. The most common titre was 1/100 with diffuse and speckled patterns. ANA seroconversion was higher for etanercept (47.8%, n=76) than with adalimumab (23.9%, n=38), infliximab (13.8%, n=22), golimumab (12.6%, n=20) or certolizumab (1.9%, n=3). SLE induced by anti-TNF-α occurred in two patients (0.9%) with erosive and seropositive (rheumatoid factor and anti-citrullinated protein antibodies) RA previously treated with two conventional synthetic disease-modifying antirheumatic drugs, including methotrexate. The first patient, a female with 66 years old and 17 years of disease duration, developed SLE after 16 months of infliximab, with constitutional symptoms, abrupt worsening of polyarthritis, ANA titer of 1/320 diffuse pattern and positive dsDNA (248 UI/mL) antibodies. The second patient, a woman with 43 years old and 11 years of disease duration, developed SLE after 41 months of adalimumab with malar rash and ANA titer of 1/320 diffuse pattern, positive dsDNA (285 UI/mL), positive anti-histone antibodies and hypocomplementemia. In these two cases, anti-TNF-α therapy was stopped and recovery was spontaneous without treatment. The first patient switched to adalimumab and the second switched to golimumab without recurrence of SLE for more than ten years.Conclusion:We found a high rate of ANA seroconversion induced by anti-TNFα therapy in patients with RA. However, similar to previous literature, only 0.9% of patients developed SLE with mild manifestations without major organ involvement. Although the drug with the highest ANA seroconversion rate was etanercept, those responsible for induced SLE were infliximab and adalimumab. Patients improved after discontinuation of therapy and tolerated an alternative anti-TNF-α drug without recurrence of induced SLE over time. Therefore, ANA and SLE induced by anti-TNF-α should be considered and reported in the follow-up of RA patients. Further research is needed to explore the impact of this adverse event on the outcomes of treatment over time.References:[1]Hochberg MC. Arthritis Rheum. 1997;40(9):1725.Disclosure of Interests:None declared


2021 ◽  
pp. 1-29
Author(s):  
Amy H. Auchincloss ◽  
Jingjing Li ◽  
Kari A. B. Moore ◽  
Manuel Franco ◽  
Mahasin S. Mujahid ◽  
...  

Abstract Objective: To examine whether the density of neighbourhood restaurants affected the frequency of eating restaurant meals and subsequently affected diet quality. Design: Cross-sectional and longitudinal designs. Structural equation models assessed the indirect relationship between restaurant density (≤3 miles (4.8 km) of participant addresses) and dietary quality (Healthy Eating Index 2010 (HEI)) via the frequency of eating restaurant meals, after adjustment for sociodemographics, select health conditions, region, residence duration and area-level income. Setting: Urbanised areas in multiple regions of the USA, years 2000–2002 and 2010–2012. Participants: Participants aged 45–84 years were followed for 10 years (n 3567). Results: Median HEI (out of 100) was 59 at baseline and 62 at follow-up. Cross-sectional analysis found residing in areas with a high density of restaurants (highest ranked quartile) was associated with 52% higher odds of frequently eating restaurant meals (≥3 times/week, odds ratio [OR]:1.52, 95% confidence interval [CI] 1.18-1.98) and 3% higher odds of having lower dietary quality (HEI lowest quartile<54, OR:1.03,CI:1.01-1.06); associations were not sustained in longitudinal analyses. Cross-sectional analysis found 34% higher odds of having lower dietary quality for those who frequently ate at restaurants (OR:1.34,CI:1.12-1.61); and more restaurant meals (over time increase ≥1 times/week) was associated with higher odds of having worse dietary quality at follow-up (OR:1.21,CI:1.00-1.46). Conclusions: Restaurant density was associated with frequently eating out in cross-sectional and longitudinal analyses but was associated with the lower dietary quality only in cross-sectional analyses. Frequent restaurant meals were negatively related to dietary quality. Interventions that encourage less frequent eating out may improve population dietary quality.


Author(s):  
Mar Muñoz-Chápuli Gutiérrez ◽  
Ana Durán-Vila ◽  
Javier Ruiz-Labarta ◽  
Pilar Payá-Martínez ◽  
Pilar Pintado Recarte ◽  
...  

Spain was one of the epicenters of the first wave of the COVID-19 pandemic. We describe in this article the design and results of a new telephone-and-telematic multiplatform model of systematic prenatal and postpartum follow-up for COVID-19-affected women implemented in a tertiary reference hospital in Madrid. We included patients with RT-PCR-confirmed COVID-19 during pregnancy or delivery from 10 March 2020 to 15 December 2020. We had a total of 211 obstetric patients: 148 (70.1%) were tested at the onset of suspicious clinical manifestations and 62 (29.4%) were tested in the context of routine screening. Of all the patients, 60 women (28.4%) were asymptomatic and 97 (46%) presented mild symptoms. Fifty-one women (24.2%) were admitted to our hospital for specific treatment because of moderate or severe symptoms. We had no missed cases and a good adherence. The mean number of calls per patient was 2.3. We performed 55 in-person visits. We analyzed the complexity of our program over time, showing a two-wave-like pattern. One patient was identified as needing hospitalization and we did not record major morbidity. Telemedicine programs are a strong and reproducible tool to reach to pregnant population affected by COVID-19, to assess its symptoms and severity, and to record for pregnancy-related symptoms both in an outpatient regime and after discharge from hospital.


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