Preventive Services Received by Adolescents With Cystic Fibrosis and Sickle Cell Disease

Britto, Maria T.; Garrett, Joanne M.; Dugliss, M. A. J.; Johnson, Cory; Majure, Joseph M.; Leigh, Margaret W.

doi:10.1001/archpedi.153.1.27

Cited by 75 publications

(49 citation statements)

References 28 publications

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“…This subtheme reflects previous research demonstrating that adolescents with CF or sickle cell disease commonly report their subspecialist as their main physician. 26 The use of the subspecialty clinic as a medical home/PCP and the impact on quality of care should be further investigated both in CF and other pediatric-onset chronic diseases.…”

Section: Theme 4: Women With Cf Prefer Early Open-minded Srh Discussmentioning

confidence: 99%

Provider and Patient Attitudes Regarding Sexual Health in Young Women With Cystic Fibrosis

et al. 2016

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OBJECTIVE: To explore the attitudes, preferences, and experiences of patients with cystic fibrosis (CF) and CF providers toward sexual and reproductive health (SRH) care for young women with CF. METHODS:Young women with CF aged 18 to 30 years from a US CF care center and pediatric and adult CF program directors from a national sample participated in qualitative interviews investigating their experiences regarding SRH care and their attitudes and preferences toward SRH care provision in the CF setting. Interviews were audio-recorded, transcribed, and coded by using a thematic analysis approach.RESULTS: Twenty-two patient participants and 16 CF program directors were interviewed. Themes shared by both groups included the importance of SRH discussion in the CF care setting, patient and provider discomfort as a barrier to SRH care, and the need for SRH educational resources and provider training to improve SRH care. Providers highlighted the lack of standardization around SRH care in the current CF care model. Patients desired SRH educational resources coupled with early SRH discussions initiated by their CF provider. CONCLUSIONS:Both CF providers and patients agree that the CF provider has a fundamental role in providing CF-specific SRH care. Educational resources coupled with individualized SRH discussions may facilitate improved SRH care for young women with CF. Investigation into the implementation of SRH education and services into pediatric-onset chronic disease care models is needed.

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Section: Theme 4: Women With Cf Prefer Early Open-minded Srh Discussmentioning

confidence: 99%

Provider and Patient Attitudes Regarding Sexual Health in Young Women With Cystic Fibrosis

et al. 2016

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“…4,9,10 Physicians cite forgetfulness, patient refusal, and practice logistical difficulties 11 as the primary reasons for not performing preventive services. Office system interventions such as physician education, chart reminders, checklists, and audit with feedback have demonstrated moderate success in improving screening rates for a variety of conditions.…”

Section: Statistical Approachmentioning

confidence: 99%

“…1 In addition to treating the chronic condition, subspecialists often provide the main or only source of ongoing care for these youths. [2][3][4] Although many specialty organizations advocate joint care with primary care physicians, 5 others, such as the American College of Rheumatology, have advocated that the rheumatologist assume responsibility for "principal care," including preventive care, for patients with chronic rheumatologic illnesses. 6,7 Medications that may be teratogenic or that interact with alcohol or other substances necessitate pediatric subspecialists routinely screen adolescents receiving these medications for common adolescent behaviors such as substance use and sexual activity.…”

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confidence: 99%

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Improving Rheumatologists' Screening for Alcohol Use and Sexual Activity

Britto¹,

Rosenthal²,

Taylor³

et al. 2000

Arch Pediatr Adolesc Med

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107

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Objectives: To design, implement, and assess the impact of an office-based intervention designed to improve rheumatologists' identification of risk behaviors, especially alcohol use and sexual activity, among adolescents and young adults with chronic rheumatologic conditions.Design: Prospective intervention study.Setting: Midwestern academic pediatric rheumatology practice.Participants: Ten attending rheumatologists and fellows and 178 patients (mean age, 18.1 years; 67% female; 88% white; 69% with juvenile rheumatoid arthritis) seen in the practice during the baseline and intervention years. Main Outcome Measures:Change in the rate of screening for alcohol use and sexual activity from the baseline to the intervention year, and physician perceptions of the intervention.Results: Screening for alcohol use increased from 4.2% (9/208) at baseline to 31.6% (56/177) after the intervention (PϽ.001). Of those patients undergoing screening at follow-up, 20 (36%) of 56 patients reported any alcohol use and 11 (20%) reported current alcohol use. Of those reporting current use, 7 (64%) were counseled or referred. Methotrexate use increased the likelihood of alcohol screening (43% [33/76] vs 26% [23/87]; P = .02). Screening for sexual activity increased from 12.4% (27/ 218) to 36.2% (64/177) (PϽ.001) from baseline to followup. Of 52 females undergoing screening at follow-up, 31 (60%) were sexually active. Eleven (41%) of 27 sexually active females were not using contraception other than condoms (4 were not asked about contraception); 7 (82%) of these were referred for contraceptive counseling. Seven rheumatologists completed in-depth semistructured interviews after the intervention. All reported time as a main barrier to screening. Other barriers included logistical problems, discomfort with the subject area, ambivalence about whether risk behavior screening is the province of pediatric rheumatologists, and perceived lack of applicability to their patients. Conclusions:Despite knowledge and concern about the interaction of immunosuppressive therapy and risk behaviors, few rheumatologists adequately screen the behavior of their adolescent and young adult patients. Time constraints, organizational issues, and physician beliefs remain barriers to widespread screening.Arch Pediatr Adolesc Med. 2000;154:478-483

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“…Providing adolescents a safe space to ask questions about substance use and directing them toward accessible and reliable resources for further information are essential. This is especially important as this topic is very frequently omitted in the context of busy clinic visits (14).…”

Section: For Drugsmentioning

confidence: 99%

Expand your HEADS, follow the THRxEADS!

Chadi

Amaria

Kaufman

2017

Paediatrics &Amp; Child Health

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Adolescence can be a particularly challenging period for individuals with a chronic health condition or disability. We present a new mnemonic, THRxEADS (T for Transition, H for Home, Rx for Medication and Treatment, E for Education and Eating, A for Activities and Affect, D for Drugs and S for Sexuality), which can be used as a complement to the adolescent HEADS (Home-Education-Activities-Drugs-Sexuality) assessment. THRxEADS may serve as a clinical tool to explore key issues that are often not covered in subspecialty clinic visits such as transition, coping, adherence and understanding of illness, as they apply to youth with special health care needs. THRxEADS may be used as a vehicle to highlight successes and to promote resilience. It may also be used as an educational tool with medical trainees to allow a deeper understanding of the realities of adolescents with chronic health care needs. A short list of sample chronic illness and disability-specific questions is provided. L'évaluation THRxEADS peut servir d'outil clinique pour explorer de grands enjeux qui ne sont souvent pas abordés lors des rendez-vous en clinique surspécialisée, comme la transition, l'adaptation, la compliance et la compréhension de la maladie, dans la mesure où ils s'appliquent chez les jeunes ayant des besoins particuliers. L'évaluation THRxEADS peut souligner les réussites et promouvoir la résilience. Ce peut aussi être un outil de formation auprès des stagiaires en médecine, qui pourront mieux comprendre les réalités des adolescents ayant des besoins de santé chroniques. Une courte liste de questions sur les maladies chroniques et les incapacités est également proposée.

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Preventive Services Received by Adolescents With Cystic Fibrosis and Sickle Cell Disease

Cited by 75 publications

References 28 publications

Provider and Patient Attitudes Regarding Sexual Health in Young Women With Cystic Fibrosis

Provider and Patient Attitudes Regarding Sexual Health in Young Women With Cystic Fibrosis

Improving Rheumatologists' Screening for Alcohol Use and Sexual Activity

Expand your HEADS, follow the THRxEADS!

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