May 2025
American Journal of Respiratory and Critical Care Medicine
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May 2025
American Journal of Respiratory and Critical Care Medicine
May 2025
American Journal of Respiratory and Critical Care Medicine
February 2025
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10 Reads
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2 Citations
Objective Although women with rheumatic and musculoskeletal diseases (RMDs) are at an elevated risk for adverse pregnancy and perinatal outcomes, some report that they lack access to resources that support informed reproductive decision‐making. We developed MyVoice:Rheum, a web‐based decision aid to support women with RMDs in reproductive decision‐making. We conducted a pilot trial to assess feasibility and acceptability of MyVoice:Rheum and to assess its preliminary effectiveness compared to a freely available online pamphlet about reproductive and RMDs. Methods Using a parallel‐arm randomized pilot trial design, we assigned women aged 18 to 44 years with RMDs in a 3:1 ratio to receive either MyVoice:Rheum or the control pamphlet immediately before a rheumatology clinical encounter. Quantitative and qualitative measures of feasibility, acceptability, and usability were assessed among MyVoice:Rheum users. We evaluated the preliminary effectiveness of MyVoice:Rheum in prompting family planning discussions as compared to pamphlet users, as well as its effects on users’ reproductive knowledge and/or communication self‐efficacy with rheumatologists. Results We enrolled MyVoice:Rheum users (n = 31) and controls (n = 9) in the pilot study. MyVoice:Rheum users scored the tool as feasible, acceptable, and easy to use. Approximately 61% of MyVoice:Rheum users and 44% of controls had family planning discussions with their rheumatologists. MyVoice:Rheum users demonstrated increases in self‐efficacy and knowledge scores after the intervention. Conclusion In pilot testing, MyVoice:Rheum was feasible, acceptable, and usable to women with RMDs. Preliminary findings suggest that MyVoice:Rheum may increase family planning discussions in the rheumatology context and augment patients’ reproductive knowledge and self‐efficacy; these findings should be confirmed in a future full‐scale study.
January 2025
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5 Reads
Journal of Cystic Fibrosis
September 2024
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1 Read
Journal of Cystic Fibrosis
September 2024
Journal of Cystic Fibrosis
September 2024
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12 Reads
Journal of Cystic Fibrosis
September 2024
Journal of Cystic Fibrosis
September 2024
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2 Reads
Journal of Cystic Fibrosis
September 2024
Journal of Cystic Fibrosis
... On the one hand, these advances provide wide access to information, including relevant education, but on the other hand, they increase exposure to negative content, such as pornography and inappropriate information about sexuality (Padli et al., 2024;. Adolescents, who are in transition and tend to have great curiosity, are often a vulnerable group to the adverse effects of uncontrolled access to information (Gruet et al., 2022;Indika et al., 2023;Kazmerski et al., 2024;. The phenomenon of free sex is one of the real impacts of the lack of information control and the lack of comprehensive sex education. ...
March 2024
Journal of Cystic Fibrosis
... 14 FemTech investigators have developed and are in various stages of testing reproductive health digital tools that support a variety of reproductive decisions across diverse health conditions and patient populations. [17][18][19] MyVoice:Rheum developers have expertise in reproductive rheumatology, women's health and obstetrics and gynecology, pharmacology and medication decision-making, pediatric chronic medical conditions, and usercentered design. ...
October 2023
Journal of Cystic Fibrosis
... Qualitative studies provide an understanding of the experience of parenthood in CF but primarily focus on individual sociological perspectives, limiting generalisability. [6][7][8] In total, existing research remains limited as it lacks longitudinal data and key psychosocial factors and has not examined widespread CF modulator use or the outcomes of US males with CF and those pursuing other paths to parenthood. Furthermore, the current approach when counselling people with CF who are considering parenthood is to provide emotional support and assistance with contingency planning for health decline. ...
February 2023
Pediatric Pulmonology
... There are few data on menopause in female individuals with CF, although one study found a median age of onset of menopause to be earlier (48.5 years) than in the general population. A significant proportion of female individuals reported worsening of CF-related symptoms during and after menopause [77]. ...
Reference:
The Aging Patient with Cystic Fibrosis
January 2023
Menopause (New York, N.Y.)
... In addition to the official ACR, EULAR, BSR, ACOG, and other organizational guidelines for the care of individual patients, there are models for institutions, such as the formation of multidisciplinary care clinics [115], and suggestions for formal pathways of care [112,113]. A focus group of rheumatologists and advanced care practitioners has advised priming patients to discuss reproductive health, having efficient referral systems to obstetric and maternal-fetal-medicine providers, and allowing for sufficient access to quality training and education on this topic [116]. To this end, the creation of this publication is to assist any provider seeking to better their care. ...
November 2022
The Journal of Rheumatology
... Additionally, adolescents living with CF should be advised to take additional precautions against sexually transmitted infections, such as Chlamydia, Human Papillomavirus, hepatitis B, C, and HIV, as these could affect future eligibility for lung transplantation. Human Papillomavirus infection can lead to immunosuppression, carrying substantial longterm health risks, so maintaining up-to-date vaccinations is essential, including catch-up vaccinations when necessary to ensure comprehensive protection [10,123]. ...
October 2022
Journal of Cystic Fibrosis
... a socially acceptable manner, is a significant concern for individuals, especially those with chronic health conditions such as CF [3]. ...
June 2022
... For AYAs, this preference for SRH counseling from specialty providers crosses disease categories. For example, AYAs with cystic fibrosis want to discuss SRH topics with their subspecialty providers, and adults with epilepsy and congenital heart disease report viewing their subspecialist as their primary source of SRH information, desiring that this counseling starts in adolescence [6][7][8][9]. Concerns around contraception and pregnancy are especially relevant during adolescence and young adulthood. This is a time many young people initiate sexual activity, including those with chronic health conditions, making SRH counseling vital [10]. ...
June 2022
Pediatric Cardiology
... For AYAs, this preference for SRH counseling from specialty providers crosses disease categories. For example, AYAs with cystic fibrosis want to discuss SRH topics with their subspecialty providers, and adults with epilepsy and congenital heart disease report viewing their subspecialist as their primary source of SRH information, desiring that this counseling starts in adolescence [6][7][8][9]. Concerns around contraception and pregnancy are especially relevant during adolescence and young adulthood. This is a time many young people initiate sexual activity, including those with chronic health conditions, making SRH counseling vital [10]. ...
April 2022
Epilepsy & Behavior
... Excitingly, since the advent of CFTR modulators, there has been a rise in the number of people with CF planning pregnancies [67][68][69][70]. This is secondary to better health enabling safer pregnancy [68,69], improvements in female subfertility, and increasing hope of living to see a child grow to greater maturity [43,70,71]. ...
February 2022
Journal of Cystic Fibrosis