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1.
J Surg Res ; 303: 173-180, 2024 Oct 01.
Article in English | MEDLINE | ID: mdl-39357348

ABSTRACT

INTRODUCTION: Leadership development programs are the key for engaging physicians as partners in health-care administration. These programs have become common; however, one potential consequence of leadership training is attrition. METHODS: Using a prospectively collected database, Kaplan-Meier curves were used to analyze attrition of physician faculty following an intramural leadership program at an academic health center. RESULTS: Six cohorts totaling 165 faculty successfully completed our leadership program. Sixty-one faculty (37%) were from surgical departments (Group A) and 104 (63%) from nonsurgical departments (Group B). Thirty-six program graduates (21.8%) departed the institution at a mean follow-up of 68 mo for an annualized attrition rate of 3.6%. Attrition rates for Group B were significantly greater than for Group A (P = 0.05). Most faculty left for career advancement opportunities elsewhere. CONCLUSIONS: Our annualized attrition rate for leadership trained faculty was 3.6%, well below the attrition rate of our academic health center (5.3%) over a similar time period, and the 2018 national physician attrition rate of 7.8%. Strategies to improve retention are discussed.

2.
Palliat Support Care ; : 1-9, 2024 Oct 04.
Article in English | MEDLINE | ID: mdl-39364629

ABSTRACT

OBJECTIVES: To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.e., family roles, social support) associated with caregiver strain. METHODS: Families of children (ages 5-25) with advanced cancer (i.e., physician-estimated prognosis < 60%, relapsed/refractory disease) were recruited from a large children's hospital. Mothers (n = 55; 87% White) and fathers (n = 30; 83% White) reported on their caregiver strain, cancer-specific stress, general stress, social support, division of 7 family roles (e.g., medical care of ill child, household chores), and their satisfaction with each role. RESULTS: Parents reported moderate caregiver strain, cancer-specific stress, and general stress, and high social support and satisfaction with family roles. Fathers reported family roles were shared equally, whereas mothers reported either sharing roles or completing them independently. When accounting for income and partnership status, greater caregiver strain for mothers was associated with greater general stress, greater satisfaction with family roles, and lower social support. For fathers, greater caregiver strain was associated only with greater cancer-specific stress. SIGNIFICANCE OF RESULTS: In the context of advanced pediatric cancer, fathers may experience caregiver strain as cancer-specific stress increases, whereas mothers' strain may depend on broader family and social factors. Psychosocial providers should address general and cancer-specific stress within families, and provide resources for enhancing mothers' social support. Additional research is needed with larger, more diverse samples to inform future intervention approaches.

6.
Vaccine ; 42(22): 126212, 2024 Sep 17.
Article in English | MEDLINE | ID: mdl-39126828

ABSTRACT

Influenza vaccination is critical for children with sickle cell disease (SCD) due to risks of severe influenza infections. Despite declining influenza vaccination among children since the COVID-19 pandemic, less is known about influenza vaccine coverage among youth with SCD during this same period. We compared influenza vaccine uptake among youth with SCD seen by a SCD provider in clinic during the 2019-2020 and 2022-2023 influenza seasons and described infection characteristics. Overall, 85% (n = 220) of children received their influenza vaccine during 2019-2020 compared to 75% (n = 245) in 2022-2023 (p = 0.059). Participants seen during both seasons were more likely to shift from vaccinated in 2019-2020 to unvaccinated in 2022-2023 than vice versa (McNemar's OR = 3.0; p = 0.008). Among 66 documented infections, 25.8% resulted in hospitalization. We found high influenza vaccine uptake but those seen during both seasons were more likely to become unvaccinated. More research is needed to understand influenza vaccine decision-making in this population.


Subject(s)
Anemia, Sickle Cell , COVID-19 , Influenza Vaccines , Influenza, Human , Humans , Influenza Vaccines/administration & dosage , Influenza, Human/prevention & control , Influenza, Human/epidemiology , COVID-19/prevention & control , COVID-19/epidemiology , Female , Male , Adolescent , Child , Vaccination Coverage/statistics & numerical data , Vaccination/statistics & numerical data , SARS-CoV-2/immunology , Child, Preschool , Pandemics/prevention & control , Hospitalization/statistics & numerical data
7.
Eur J Pediatr ; 2024 Aug 28.
Article in English | MEDLINE | ID: mdl-39196327

ABSTRACT

Transgender/non-binary (TNB) adolescents are at increased risk for mental health concerns, and caregiver awareness is important to facilitate access to care. Yet, limited research has examined caregiver awareness of TNB mental health. Thus, we examined (1) the prevalence of internalizing symptoms (depression, generalized anxiety, separation anxiety, social anxiety) among TNB adolescents and (2) associations between adolescent and caregiver reports of adolescent mental health symptoms. TNB adolescents (N = 75) aged 12-18 and a caregiver were recruited from a multidisciplinary gender clinic in Ohio. Adolescents self-reported their mental health symptoms via the CDI and SCARED. Caregivers reported their perceptions of the adolescent's mental health symptoms via the CASI-5. Descriptive statistics assessed participant characteristics, adolescent self-reported mental health symptoms, and caregiver proxy reports of adolescent mental health symptoms. Pearson's correlations and scatterplots were used to compare adolescent and caregiver reports and McNemar tests assessed if the differences were statistically significant. Most TNB adolescents reported elevated symptoms of depression (59%), generalized anxiety (75%), separation anxiety (52%), and social anxiety (78%). Caregiver and adolescent reports were significantly correlated for depression (r = .36, p = .002), separation anxiety (r = .39, p < .001), and social anxiety (r = .47, p < .001). Caregiver and adolescent reports of generalized anxiety were not significantly correlated (r = .21, p = .08). McNemar tests were significant (all p < .001), such that adolescents' reports met clinical cutoffs far more than their caregivers' reports. CONCLUSIONS: Though adolescent and caregiver reports were low to moderately correlated, youth reports were consistently higher, suggesting the importance of interventions to increase caregiver understanding of TNB adolescent mental health. WHAT IS KNOWN: • Transgender/non-binary adolescents are at high risk for mental health concerns and caregivers are essential to coordinate care. WHAT IS NEW: • This study expands the diagnostic mental health sub-categories examined in transgender/non-binary adolescents, noting elevated symptoms of separation and social anxiety. • Transgender/non-binary adolescents reported more symptoms of depression, generalized anxiety, separation anxiety, and social anxiety than caregivers.

8.
J Adolesc Health ; 2024 Aug 14.
Article in English | MEDLINE | ID: mdl-39140925

ABSTRACT

PURPOSE: Polycystic ovary syndrome (PCOS) is prevalent in young females and is known to affect fertility. Minimal research has examined fertility perspectives in adolescents with PCOS, despite adult research revealing relationships between infertility and psychosocial well-being and quality of life. We examined fertility perspectives/concerns in adolescents with PCOS and an age- and body mass index (BMI)-matched control group and explored associations with quality of life. METHODS: This was a cross-sectional study of female adolescents (13-21 years of age) with PCOS (n = 50) and age- and BMI-matched controls (n = 50), recruited at a large Midwestern pediatric center. Surveys assessed sociodemographics, hirsutism, fertility perspectives and quality of life. Descriptive statistics and Welch's 2-sample t-tests were used to examine fertility perspectives and quality of life. RESULTS: Of the 103 approached, 100 participants were enrolled (97% recruitment rate), with 50 participants in each group. Parenthood goals did not significantly differ between groups; >70% expressed desire to have biological children. However, PCOS participants reported significantly higher concerns about future fertility (p < .01) without differences in fertility knowledge or support (p = .53). Most PCOS participants stated they would feel angry if their provider withheld this information and reported wanting more information. Quality of life did not differ between groups. DISCUSSION: Our study suggests that irrespective of PCOS status, most adolescents aspire to parenthood. Notably, many with PCOS lack awareness of infertility risks but express heightened concerns. In contrast to adult studies, fertility concerns among adolescents with PCOS were not associated with decreased quality of life, suggesting that earlier fertility counseling may improve outcomes.

9.
Pediatr Blood Cancer ; 71(10): e31240, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39099153

ABSTRACT

BACKGROUND: Sexually transmitted infections (STIs) are common and disproportionately affect Black adolescents and young adults (AYAs). Less is known about STIs among Black AYAs with chronic conditions, such as sickle cell disease (AYAs-SCD). This study compared STI testing and diagnosis between AYAs-SCD and their peers, overall and among STI-related encounters. PROCEDURE: This retrospective, cross-sectional study used diagnosis and billing codes in the Pediatric Health Information System (PHIS) to identify inpatient and emergency department encounters from January 1, 2022 to May 31, 2023 among all AYAs 15-24 years and those with STI-related diagnoses (e.g., "cystitis"). STI testing and diagnosis rates were compared between AYAs-SCD, non-Black AYAs, and Black AYAs, controlling for age, sex, and encounter setting. RESULTS: We identified 3602 AYAs-SCD, 177,783 Black AYAs, and 534,495 non-Black AYAs. AYAs-SCD were less likely to be tested for STIs than non-Black AYAs (odds ratio [OR] = 0.26; adj. p < .001) and Black AYAs (OR = 0.53; adj. p < .001). When tested, AYAs-SCD were more likely to be diagnosed with an STI than non-Black AYAs (OR = 2.39; adj. p = .006) and as likely as Black AYAs (OR = 0.67; adj. p = .15). Among STI-related encounters, AYAs-SCD were less likely to be tested than non-Black AYAs (OR = 0.18; adj. p < .001) and Black AYAs (OR = 0.44; adj. p < .001). No significant differences in STI diagnoses were found in this subset between AYAs-SCD and non-Black AYAs (OR = 0.32; adj. p = .28) or Black AYAs (OR = 1.07; adj. p = .99). CONCLUSIONS: STI care gaps may disproportionately affect AYAs-SCD. STIs should be considered when evaluating symptomatic AYAs-SCD in acute settings. More research is needed to further contextualize STI care for AYAs-SCD.


Subject(s)
Anemia, Sickle Cell , Sexually Transmitted Diseases , Humans , Anemia, Sickle Cell/diagnosis , Anemia, Sickle Cell/epidemiology , Adolescent , Sexually Transmitted Diseases/diagnosis , Sexually Transmitted Diseases/epidemiology , Male , Female , Retrospective Studies , Cross-Sectional Studies , Young Adult , Adult , Black or African American/statistics & numerical data , Follow-Up Studies
10.
LGBT Health ; 2024 Jul 17.
Article in English | MEDLINE | ID: mdl-39016468

ABSTRACT

Purpose: The purpose of this analysis is to: 1) describe the most common mental health diagnoses in the emergency department (ED) and inpatient hospital settings among transgender and gender diverse (TGD) youth vs. matched controls and 2) evaluate if a gender-affirming hormone therapy (GAHT) or gonadotropin-releasing hormone agonist (GnRHa) prescription decreased the risk of suicidality within these settings. Methods: Using the PEDSnet dataset (years 2009-2019), TGD youth aged 8-18 (n = 3414, with a median age at last visit of 16.2 [14.4, 17.7] years, were propensity-score matched to controls (n = 13,628, age 16.6 [14.2, 18.3] years). Relative risks of the most common mental health diagnoses within ED and inpatient settings were calculated for TGD youth compared with controls. Recurrent time-to-event analysis was used to examine whether GAHT or GnRHa attenuated the risk of suicidality among subsamples of TGD youth. Results: TGD youth had a higher relative risk (95% confidence interval [CI]) of mental health diagnoses and suicidality in the ED (5.46 [4.71-6.33]) and inpatient settings (6.61 [5.28-8.28]) than matched controls. TGD youth prescribed GAHT had a 43.6% lower risk of suicidality (hazard ratio [HR] = 0.564 [95% CI 0.36-0.89]) compared with those never prescribed GAHT during our study period or before GAHT initiation. TGD youth who were prescribed GnRHa therapy had a nonstatistically significant reduction in ED or inpatient suicidality diagnoses compared with those never prescribed GnRHa (HR = 0.79 [0.47-1.31]). Conclusion: Although risk of mental health diagnoses and suicidality in ED and inpatient settings was high among TGD youth, a GAHT prescription was associated with a significant reduction in suicidality risk.

11.
J Pediatr Psychol ; 49(7): 512-523, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38867313

ABSTRACT

OBJECTIVE: Differences of sex development (DSD) can affect the physical health, appearance, and psychosocial functioning of affected individuals, but little is known about how subjective appearance perceptions (body image) impact psychosocial outcomes. This study evaluated body image and its associations with psychosocial outcomes including quality of life, resilience, and psychosocial adjustment. METHODS: This cross-sectional, multi-method study assessed body image and psychosocial outcomes including quality of life, adjustment, and resilience in 97 youth and young adults with DSD (mean age = 17 ± 3.7 years; 56% assigned female in infancy) using psychometrically sound instruments. A subsample (n = 40) completed qualitative interviews. RESULTS: Quantitative results indicated that overall, participants were satisfied with their physical appearance, although less so with their primary sex characteristics. Body image dissatisfaction was associated with poorer psychosocial adjustment, quality of life, and resilience. Qualitatively, youth and young adults reported a variety of perceptions, both positive and negative, related to their body image and the impact of living with a DSD condition. Themes identified included appearance management; effects of DSD on body image; diagnostic factors and features; attitudes about diagnosis; and treatment. CONCLUSIONS: Body image is significantly associated with psychosocial outcomes in youth and young adults with DSD, with qualitative findings highlighting both positive and negative body image experiences. Results have implications for clinical care including screening for appearance concerns, normalization of appearance variations, and intervention development to better support healthy body image and psychosocial functioning in youth and young adults with DSD.


Subject(s)
Body Image , Disorders of Sex Development , Quality of Life , Humans , Female , Male , Body Image/psychology , Quality of Life/psychology , Adolescent , Young Adult , Cross-Sectional Studies , Disorders of Sex Development/psychology , Adult , Resilience, Psychological , Psychosocial Functioning
12.
Article in English | MEDLINE | ID: mdl-38783717

ABSTRACT

CONTEXT: Small cohorts of youth with congenital adrenal hyperplasia (CAH) demonstrate increased risk of obesity and poor cardiometabolic health. OBJECTIVE: To determine the odds of cardiometabolic-related diagnoses in youth with CAH compared to matched controls in a cross-sectional analysis in a large, multisite database (PEDSnet). DESIGN: Electronic health record data (2009-2019) were used to determine odds of cardiometabolic-related outcomes based on diagnosis, anthropometric and laboratory data using logistic regression among youth with CAH vs. controls. SETTING: Six PEDSnet sites. PATIENTS OR OTHER PARTICIPANTS: Youth with CAH and >1 outpatient visit in PEDSnet (n=1,647) were propensity-score matched on 8 variables to controls (n=6,588). A subset of youth with classic CAH (n=547, with glucocorticoid and mineralocorticoid prescriptions) were matched to controls (n=2,188). INTERVENTION(S): N/A. MAIN OUTCOME MEASURE(S): Odds of having cardiometabolic-related diagnoses among youth over 2 years with CAH compared to matched controls. RESULTS: Outcomes were calculated for all individuals with CAH (median age at last visit 12.9 years [7.3, 17.6]) and a subset with classic CAH (median age at last visit 11.6 years [4.7, 17.5]) compared to their matched controls. All patients with CAH had higher odds of overweight/obesity (odds ratio [95% confidence interval] 3.63 [3.24,4.07]), hypertension (3.07 [2.60,3.64]), dysglycemia (1.95 [1.35,2.82], dyslipidemia (2.28 [1.79,2.91]) and liver dysfunction (2.30 [1.91,2.76]) compared to matched controls. Patients with classic CAH had higher odds of overweight/obesity (3.21 [2.61,3.93]), hypertension (8.22 [6.71,10.08]), and liver dysfunction (2.11 [1.55,2.89]) compared to matched controls. CONCLUSIONS: Overall, youth with CAH are at increased risk of diagnoses related to worse cardiometabolic health.

13.
Pediatrics ; 153(6)2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38752289

ABSTRACT

OBJECTIVES: To identify and examine demographic variation in estimates of gender-diverse youth (GDY) populations from the PEDSnet learning health system network and the Youth Risk Behavior Survey (YRBS). METHODS: The PEDSnet sample included 14- to 17-years-old patients who had ≥2 encounters at a member institution before March 2022, with at least 1 encounter in the previous 18 months. The YRBS sample included pooled data from 14- to 17-year-old in-school youth from the 2017, 2019, and 2021 survey years. Adjusted logistic regression models tested for associations between demographic characteristics and gender dysphoria (GD) diagnosis (PEDSnet) or self-reported transgender identity (YRBS). RESULTS: The PEDSnet sample included 392 348 patients and the YRBS sample included 270 177 youth. A total of 3453 (0.9%) patients in PEDSnet had a GD diagnosis and 5262 (1.9%) youth in YRBS self-identified as transgender. In PEDSnet, adjusted logistic regression indicated significantly lower likelihood of GD diagnosis among patients whose electronic medical record-reported sex was male and among patients who identified as Asian, Black/African American, and Hispanic/Latino/a/x/e. In contrast, in the YRBS sample, only youth whose sex was male had a lower likelihood of transgender identity. CONCLUSIONS: GDY are underrepresented in health system data, particularly those whose electronic medical record-reported sex is male, and Asian, Black/African American, and Hispanic/Latino/a/x/e youth. Collecting more accurate gender identity information in health systems and surveys may help better understand the health-related needs and experiences of GDY and support the development of targeted interventions to promote more equitable care provision.


Subject(s)
Transgender Persons , Humans , Adolescent , Male , Female , Transgender Persons/statistics & numerical data , United States/epidemiology , Gender Dysphoria/epidemiology , Gender Dysphoria/psychology , Surveys and Questionnaires
14.
J Pediatr Psychol ; 2024 May 02.
Article in English | MEDLINE | ID: mdl-38699955

ABSTRACT

BACKGROUND: As survival rates for individuals with sickle cell disease (SCD) increase, calls have been made to improve their reproductive healthcare and outcomes. The research team created a web-based program entitled Fertility edUcaTion to Understand ReproductivE health in Sickle cell disease (FUTURES). The study aim was to use the Consolidated Framework for Implementation Research (CFIR) during pre-implementation to identify challenges and opportunities from the individual to systems level of implementation to ultimately optimize the integration of FUTURES into clinical practice. METHODS: Semi-structured interviews were conducted with clinicians, research team members, and adolescent and young adult (AYA) males with SCD and their caregivers who participated in pilot testing. Interviews (N = 31) were coded inductively and then mapped onto CFIR domains (i.e., outer setting, inner setting, characteristics of individuals, and intervention characteristics). RESULTS: Research team interviews indicated the lack of universal guidelines for reproductive care in this population and gaps in reproductive health knowledge as key reasons for developing FUTURES, also highlighting the importance of collaboration with community members during development. Clinicians reported intraorganizational communication as essential to implementing FUTURES and discussed challenges in addressing reproductive health due to competing priorities. Clinicians, AYAs, and caregivers reported positive views of FUTURES regarding length, engagement, accessibility, and content. Suggestions for the best setting and timing for implementation varied. CONCLUSIONS: Using CFIR during the pre-implementation phase highlighted challenges and opportunities regarding integrating this program into SCD care. These findings will inform adaptation and further testing of FUTURES to ensure effective implementation of this novel education program.

15.
Patient Educ Couns ; 125: 108294, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38669761

ABSTRACT

OBJECTIVES: We examined: (1) healthcare communication satisfaction and psychosocial outcomes (resilience, QoL, and psychological adjustment) in adolescents and young adults (AYA) with differences of sex development (DSD), (2) differences in psychosocial outcomes between those who were highly satisfied and those who were less satisfied, and (3) group differences between adolescents (ages 12-17) and young adults (ages 18-26) regarding associations with healthcare communication and psychosocial outcomes. METHODS: AYA with DSD across four study sites reported on satisfaction with healthcare communication and psychosocial outcomes. Analyses included descriptive statistics (aim 1), independent samples t-tests (aim 2), and Pearson's correlations (aim 3). RESULTS: Participants reported high levels of satisfaction with healthcare communication. Higher healthcare communication satisfaction was associated with greater resilience (p = .01), better QoL (p = .02), and fewer internalizing problems (p = .04). For adolescents, higher healthcare communication satisfaction was associated with better psychosocial outcomes (p values ranging from.01-.04). No significant associations were found in the young adult group. CONCLUSIONS: Satisfaction with healthcare communication is related to positive psychosocial outcomes in adolescents with DSD. PRACTICE IMPLICATIONS: These data underscore the importance of optimizing communication with families, engaging AYA in early and ongoing discussions about their care, and including psychosocial providers in DSD care.


Subject(s)
Communication , Patient Satisfaction , Quality of Life , Humans , Adolescent , Female , Male , Young Adult , Adult , Quality of Life/psychology , Disorders of Sex Development/psychology , Child , Adaptation, Psychological , Surveys and Questionnaires , Resilience, Psychological
16.
Reproduction ; 168(2)2024 08 01.
Article in English | MEDLINE | ID: mdl-38642576

ABSTRACT

In brief: Transgender and gender diverse (TGD) youth demonstrate low utilization of fertility preservation before medical and surgical gender-affirming interventions. However, a significant number of TGD youth have goals for parenthood and/or recognize that their attitude toward future family-building goals may change over time. In this narrative review, we conclude that TGD young people should have ongoing opportunities to discuss their family-building goals and options for fertility preservation. Validated decision tools can help facilitate these discussions. Abstract: The number of transgender and gender diverse (TGD) youth seeking care continues to increase, necessitating comprehensive counseling about potential long-term effects of gender-affirming medical interventions on fertility. The objective of this narrative review was to examine fertility-related knowledge, attitudes, and decision-making (including factors influencing decisions, decision regret, and decision tools) among TGD youth. We searched PubMed, PsycInfo, and Google Scholar for original, peer-reviewed research investigating TGD youth attitudes and knowledge of fertility and fertility preservation, perspectives on fertility counseling and fertility preservation decision-making, as well as fertility-related decision tools. We reviewed 106 studies; eight were included in this narrative review. Four studies assessed TGD youth knowledge and attitudes of fertility and fertility preservation, three examined perspectives on fertility counseling and fertility preservation decision-making, and three discussed development of decision tools. Key findings were that: (1) many TGD youth are aware of potential fertility-related impacts of gender-affirming treatments, but there are still unmet informational needs, (2) some TGD youth report an interest in future biological parenthood, and of those who are not currently interested in biological parenthood, many acknowledge their desires may change over time, (3) ongoing discussions about fertility and fertility preservation are critical, and (4) decision tools are in development. In conclusion, TGD youth and their caregivers should receive ongoing, comprehensive fertility counseling and decision tools may be helpful to facilitate these discussions and decisions in each youth's gender-affirming care journey.


Subject(s)
Decision Making , Fertility Preservation , Health Knowledge, Attitudes, Practice , Reproductive Health , Transgender Persons , Humans , Fertility Preservation/psychology , Fertility Preservation/methods , Adolescent , Transgender Persons/psychology , Female , Male , Fertility , Counseling
17.
Palliat Support Care ; : 1-8, 2024 Feb 14.
Article in English | MEDLINE | ID: mdl-38353006

ABSTRACT

OBJECTIVES: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease. Thus, we examined the impact of background factors and decision-making perceptions on both adolescents' involvement in care and their desired change in involvement. METHODS: Adolescents with advanced cancer (<60% survival or refractory/relapsed disease), ages 10-23 (n = 41; Mage = 15.37), were recruited approximately 1 month after diagnosis to complete measures of decision-making perceptions and their family role. Hierarchical regressions examined the contributions of background factors and decision-making perceptions to adolescents' frequency and desired involvement in their care. Qualitative interviews regarding decision-making were analyzed using deductive analysis. RESULTS: The model examining frequency of involvement in care was significant, F(5,34) = 3.12, p = .02, R2= .31. Older age was the only significant predictor (ß = .13, p= .003). The model examining desired involvement was non-significant, F(5,34) = 2.22, p = .075. Qualitative analysis indicated that (1) older adolescents have more involvement in decision-making, (2) collaborative decision-making occurred between the adolescent and extended family, and (3) adolescents trusted others to make decisions. Integration of qualitative and quantitative data revealed congruence in findings. SIGNIFICANCE OF RESULTS: Adolescents with advanced cancer, who consider how decisions directly impact them and prefer greater autonomy, may be more involved in their medical care. Research is needed to identify other longitudinal predictors of decision-making and involvement in care. Providers should consider encouraging families to communicate their preferences and engage in shared decision-making.

19.
J Pediatr Adolesc Gynecol ; 37(3): 360-364, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38253233

ABSTRACT

STUDY OBJECTIVES: Recommendations from the Children's Oncology Group Long-Term Follow-Up (COG-LTFU) Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer emphasize the importance of reproductive health care, yet little is known regarding adherence to these recommendations and non-fertility-related sexual and reproductive health (SRH) outcomes. METHODS: Follow-up of outcomes on the basis of the COG-LTFU guidelines was assessed in female patients who underwent fertility preservation consultation before gonadotoxic therapy between 2016 and 2022 at a single institution and were at least 6 months from treatment completion. RESULTS: We included 140 patients, with a mean time of 2.7 years from treatment completion. Eighty-six patients were 12 years old or older, of whom sexual activity was recorded in 59 (68.7%), and 12 of 31 (38.7%) sexually active patients underwent sexual function assessment. The 57 (66.3%) patients at high risk of premature ovarian insufficiency (POI) at diagnosis were more likely than minimal-risk counterparts (29, 33.7%) to have abnormal uterine bleeding (42.1% vs 17.2%, P = .03), to be diagnosed with POI (29.8% vs 0%, P = .01), and to have sexual activity recorded (77.2% vs 51.7%, P = .03). Of 17 patients with POI, 82.4% were on hormone replacement therapy, and 58.8% had undergone bone mineral density testing. CONCLUSION: This study adds to the limited literature regarding non-fertility-related SRH outcomes after gonadotoxic therapy and illustrates opportunities to improve adherence to the COG-LTFU guidelines. Increased attention to SRH guidelines may increase detection and treatment of SRH conditions, improving the health and quality of life of female cancer survivors.


Subject(s)
Fertility Preservation , Reproductive Health , Tertiary Care Centers , Humans , Female , Adolescent , Child , Young Adult , Cancer Survivors , Primary Ovarian Insufficiency/chemically induced , Hospitals, Pediatric , Adult , Sexual Health , Antineoplastic Agents/adverse effects , Neoplasms/drug therapy , Neoplasms/therapy , Neoplasms/complications , Sexual Behavior
20.
Pediatr Blood Cancer ; 71(4): e30848, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38200547

ABSTRACT

Adult males with sickle cell disease (SCD) may have abnormal semen parameters, raising the concern that SCD and/or treatments may impact fertility. Yet, studies that include adolescents are lacking. To determine if fertility testing is feasible in male adolescents with SCD, and to explore their experiences and outcomes of fertility testing, 33 adolescents who completed a web-based SCD reproductive health education program were offered a free semen analysis. Five (15%) obtained testing and each had abnormalities. Barriers to testing included lack of time and transportation and discomfort. Findings highlight the need for larger, longitudinal studies using innovative testing approaches.


Subject(s)
Anemia, Sickle Cell , Adult , Humans , Male , Adolescent , Anemia, Sickle Cell/therapy , Fertility , Longitudinal Studies
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