Female Adolescents And Young Adults Research Articles

Evaluating provider communication in pediatric chronic kidney disease care using a global coding system

ObjectiveAmong adolescents and young adults (AYAs) with chronic illness, effective provider communication is essential for patient-centered care during a sensitive developmental period. However, communication in chronic illness care for AYAs is not well studied. Our objectives were to describe the provider communication skills in pediatric chronic kidney disease (CKD) care visits; and determine if communication skills differ by AYA characteristics. MethodsWe adapted a global consultation rating system for pediatric subspecialty care using audiotaped clinic encounters of 18 pediatric nephrologists with 99 AYAs (age M(SD) = 14.9(2.6)) with CKD stages 1–5 and 96 caregivers. We hypothesized that provider communication skills would differ by AYA characteristics (age, gender, and race). ResultsThe strongest provider skills included initiating the session and developing rapport; lowest rated skills were asking patient’s perspective and checking understanding. Communication scores did not consistently differ by AYA age or race, but were rated higher with female AYAs in several domains (ps<0.05). ConclusionsPediatric providers generally had adequate or good communication scores with AYAs, but improvement in certain skills, particularly with male AYAs, may further support patient-centered care. Practice implicationsTo achieve consistent, patient-centered communication with AYAs, an observation-based global assessment may identify areas for provider improvement.

Interprofessional provider educational needs and preferences regarding the provision of sexual and reproductive health care in cystic fibrosis

BackgroundSexual and reproductive health (SRH) is an important disease-specific concern for adolescent and young adult (AYA) women that is not consistently addressed in cystic fibrosis (CF) centers. This study identifies educational needs and preferences of interprofessional CF providers regarding SRH in AYA women with CF. MethodsInterprofessional CF providers participated in an anonymous survey regarding general and CF-specific SRH knowledge and skills, factors for optimizing SRH care, and preferred approaches for SRH training. We calculated descriptive statistics for all respondents and stratified by provider type. ResultsA total of 523 providers completed the survey (39% physicians/advanced practice providers, 19% nurses, 20% social workers, and 22% other disciplines). Half reported comfort responding to female AYA SRH concerns; however, only one-third were comfortable asking appropriate questions and confident taking a sexual history. Only 29% were comfortable with their current CF-specific SRH knowledge. Respondents' preferred SRH topics for further training included: pregnancy/parenthood planning, sexual functioning, urinary incontinence, intimate partner violence, and taking a sexual history. Nearly two-thirds felt having connection to women's health specialists familiar with CF would facilitate SRH care. Approximately one-third desired SRH educational materials for providers to view at point-of-care or through online case-based learning; <10% were interested in role playing SRH skills. ConclusionMany interprofessional CF providers lack comfort and skills in addressing SRH with AYA women with CF. Provider training needs and approaches identified in this study can be used to develop tailored educational interventions to improve comprehensive CF care.

249. Stakeholder-Guided Development of Sexual And Reproductive Health Training For Cystic Fibrosis Providers

Stakeholder engagement is a key component in developing educational initiatives aimed at improving adolescent and young adult (AYA) comprehensive care. This project describes a systematic approach to and evaluation of stakeholder engagement in the development of female AYA sexual and reproductive health (SRH) training for interprofessional cystic fibrosis (CF) healthcare providers. Key stakeholders iteratively developed the goals and objectives and discussed preferred educational strategies of a SRH training program using the Kern approach to curriculum development for medical education.1 This six-step approach consists of: 1) problem identification, 2) a targeted needs assessment of learners, 3) development of curricular goals and objectives, 4) selection of educational strategies, 5) implementation of training, and 6) evaluation and feedback. Process measures for stakeholder involvement (stakeholder recruitment, composition, co-learning, and transparency) and immediate outcomes (impact on the development process and satisfaction) were measured via recorded stakeholder recommendations and a survey. Sixteen stakeholders (2 adult women with CF, 4 mothers of AYA women with CF, 3 pediatric pulmonologists, 2 adult pulmonologists, a CF social worker, a CF dietitian, an adolescent medicine physician, an expert on disability, and a medical education expert) participated in this project. Attendance during 3 group conference calls ranged from 10-12 stakeholders. A nearly equal mix of patients/parents, healthcare providers, and experts attended all calls. Twelve participants completed the stakeholder survey. A majority of stakeholders understood their roles, had their expectations for the project met or exceeded, and were satisfied with the frequency and quality of engagement in the project. All stakeholders provided multiple concrete recommendations during the development process. Stakeholders generated a user-empathy map outlining the feelings, pain points, influences, goals, and tasks of interprofessional CF providers related to the provision of female SRH care. The group reviewed prior research identifying the needs and preferences of interprofessional CF providers regarding SRH training. Stakeholders developed specific training goals and objectives to enhance the capacities of all members of the interprofessional CF care team around their: 1) SRH knowledge, 2) perspectives, and 3) communication skills. The group also discussed educational strategies to achieve the outlined objectives. Stakeholders favored a mixed approach offering web-based and in-person learning opportunities (such as interactive webinars, regional workshops, or presentations at national meetings). This project utilized systematic stakeholder engagement in the development of training for interprofessional CF providers centered on female AYA SRH. The intentional process for engaging patients/parents, healthcare providers, and discipline experts can be implemented for similar educational programs seeking to improve AYA care. 1Kern DE et al. Curriculum Development for Medical Education: A Six-Step Approach, Johns Hopkins University Press; 2009.

Recruitment via social media: advantages and potential biases.

BackgroundAdolescent and young adult (AYA) cancer survivors are under-represented in research. Social media is increasingly used for recruitment given its ability to reach large audiences. Differences in participant characteristics and potential biases due to recruitment source are not well understood.PurposeThis study aimed to: (a) compare recruitment strategies (hospital-based v. social media) in enrollment metrics, and (b) among enrolled participants, evaluate group differences in patient characteristics and patient reported outcomes (PROs).MethodsPreliminary data from a cancer and fertility study with female AYAs were evaluated. Hospital-based recruitment used electronic medical records (EMR) to identify eligible patients. Social media recruitment involved posting on partner organizations’ social media outlets. PROs included validated measures related to the parent study. Descriptive statistics evaluated recruitment metrics. Independent samples t-tests and chi-square identified differences in participant characteristics and PROs based on recruitment.ResultsSocial media yielded a higher enrollment rate (37%; n = 54/146) compared with hospital-based recruitment (7%; n = 21/289) and required fewer study resources. Compared with hospital-based recruitment, participants from social media were more likely to be White (p = 0.01), with a longer time since treatment (p = 0.03); and reported higher levels of reproductive concern (p = 0.004) and negative mood (p = 0.02), and more negative illness perceptions (ps < 0.05).ConclusionRecruitment via social media may be a more effective and efficient strategy compared with hospital-based methods. However, group differences were identified that could bias findings and limit generalizability. Advantages of social media should be considered with an understanding of how methodology may impact enrollment and results.

A Reappraisal of Sex-Specific Cancer Survival Trends Among Adolescents and Young Adults in the United States.

Cancer survival among adolescents and young adults (AYAs) was previously reported as showing little or no improvement compared to younger or older counterparts. The role of the HIV/AIDS epidemic in the AYA survival deficit has not been evaluated. Using cancer registry data from the Surveillance, Epidemiology, and End Results program (SEER 9), we examined sex-specific 5-year relative survival trends for children (0-14 years old), AYAs (15-39 years old), and older adults (40 years and older) diagnosed with cancer during 1973-2009 and followed through the end of 2014. The analysis was conducted with and without Kaposi sarcoma (KS) and lymphomas, and by two time periods: 1973-1977 (before the human immunodeficiency virus/acquired immunodeficiency syndrome [HIV/AIDS] epidemic) and 2005-2009 (after the HIV/AIDS epidemic waned). A total of 3 209 721 invasive cancer cases were included in the study (27 646 children, 213 930 AYAs, and 2 968 145 older adults; 24 803 children, 178 741 AYAs, and 2 844 062 older adults when KS and lymphoma cases were excluded). We found that 5-year relative survival for AYAs exceeded that of children and older adults before the onset of the HIV/AIDS epidemic (eg, during 1973-1979, 0.58-0.67 among male AYAs as compared with 0.47-0.61 for male children and 0.36-0.42 for male older adults; among female AYAs, the numbers were 0.73-0.77 as compared with 0.51-0.65 for female children and 0.52-0.55 for female older adults); substantially declined during 1983-1997 when HIV/AIDS lacked effective treatment among male AYAs; and returned to be higher than most age groups by the late 1990s after HIV/AIDS was controlled. Nonetheless, comparison of survival improvement between 1973-1977 and 2005-2009 demonstrated less progress in AYAs than other age groups, which was due to AYAs' better baseline survival and larger survival gains among children and older adults in recent years. Apart from the temporary impact of HIV/AIDS, survival among AYA cancer patients has shown sustained improvement and superiority relative to other age groups. However, these encouraging findings do not negate the distinctive challenges in cancer diagnosis, treatment, and survivorship faced by AYAs.

Comparing Perceptions of Concerns Regarding Complications Including Reproductive Health (RH) in Male and Female Adolescents and Young Adults (AYA) with TID

Tight glycemic control decreases risks of complications. Male and female AYA with T1D are vulnerable to poor glycemic control resulting in retinopathy (RET), neuropathy, nephropathy, high blood pressure (HBP), and RH complications. About half of males with T1D report RH complications (e.g., erectile dysfunction) as early as 25 years and up to 10% of women with T1D have pregnancy-related complications; however, these topics are rarely discussed. Purpose: To describe and compare concerns of diabetes-related complications, including adverse RH outcomes among male and female AYA with T1D. Methods: A diabetes transition care program for AYA with T1D at an academic children’s hospital provides care and small group discussion-education sessions on relevant topics (e.g., RH with diabetes, complications/prevention, risk behavior, self-care). Participants were given a survey prior to the program to gauge perceptions on T1D complications. Both female (n=19) and male (n=23) participants (aged 17-22 years) ranked concerns for complications from 1 (most) to 5 (least). Mann-Whitney U-tests were used to compare genders on complication rankings. Results: RET was the greatest concern for both females (n=7; 37%) and males (n=10; 44%). The second most frequently reported concern was RH for females (n=5; 26%) and HBP for males (n=5; 22%). The most frequently reported “least” concerning complication was RH for males (n=9; 39%) and HBP for females (n=11; 58%). A significant difference between genders was HBP (p=.02), where males tended to report greater concern. Conclusion: Retinopathy was an overall major concern. Gender differences in concerns were found for only HBP. No males ranked RH complications as a major concern. It is imperative to raise awareness and discuss concerns during adolescence. Initiating discussions with health professionals can empower AYA with T1D to maintain healthy lifestyles and prevent complications including RH. Disclosure A.F.R. Fischl: None. D. Charron-Prochownik: None. S.M. Sereika: None. D.L. Rofey: None. D.J. Becker: None. J. Finney: None. A.M. Diaz: None. I. Libman: Consultant; Self; Novo Nordisk A/S.

Accessing support before or after a parent dies from cancer and young people's current wellbeing.

To examine differences in distress and unmet needs between bereaved adolescent and young adult (AYA) offspring who accessed support before and after being bereaved by parental cancer, and to explore aspects of their cancer experience that influenced their help-seeking. Phase 1: Surveys completed by AYAs (11-26years) bereaved by parental cancer were subjected to analysis of covariance examining differences in distress and unmet needs between those who accessed support before (n=159) and after (n=212) parental bereavement. Phase 2: Semi-structured interviews explored the cancer experiences of bereaved offspring (n=8) and factors that influenced their decision to seek support. Phase 1: There were no significant group differences in distress and unmet needs; however, older and female AYAs reported higher levels of distress and unmet needs. Interestingly, individuals who accessed support pre-bereavement were older on average (M=17.35years, SD=3.26) than those who accessed support post-bereavement (M=15.73years, SD=3.26). Phase 2: Three themes emerged centred on socio-emotional developmental changes during and after the cancer trajectory. These related to: participants' meaning-making and changes in understanding of the cancer experience, changing relationships and desires to fit in, and understanding of their own emotional needs. While no differences were found in unmet needs and distress between those who sought support pre- or post-bereavement, those seeking support pre-bereavement were older on average. Social and emotional development impacts how bereaved offspring access psychosocial support. Awareness of these issues can assist in improving support by ensuring services are age appropriate and families are sufficiently supported.

How Can Pharmacists Support STI Prevention and Treatment Among Female Adolescents and Young Adults?

Sexual and reproductive health is a critical focus area for adolescents and young adults (AYAs). Of the 20 million newly diagnosed Sexually Transmitted Infections (STIs) annually, nearly half of them are contracted by young people between the ages of 15 to 24. It has become increasingly necessary to improve awareness and prevention of STIs during adolescent years. The knowledge gained through appropriately relevant sexual and reproductive health education may persist as adolescents transition into adulthood. Community pharmacists interact with AYAs frequently and are therefore well positioned to engage this vulnerable population in conversations about their sexual and reproductive health through use innovative and interactive technologies. For instance, mobile applications are easily accessible to AYAs and can allow pharmacists to disseminate relevant medication information to smartphone users that download adolescent-tailored mobile applications. Although many medication adherence apps are currently available on the market, none of these apps are tailored towards sexual reproductive health information for female AYAs. A mobile-based program designed to provide a pharmacist-guided sexual and reproductive health education to female AYAs may help to address the lapses in current adolescent-aged school health classes. In the future, usage of this intervention would improve the accuracy and comprehension of female adolescents and young adults’ awareness and knowledge of their sexual and reproductive health. As a result, further research should be conducted to develop mobile applications conducive to adolescent and young adults to address sexual and reproductive health issues.&#x0D; Conflict of Interest&#x0D; We declare no conflicts of interest or financial interests that the authors or members of their immediate families have in any product or service discussed in the manuscript, including grants (pending or received), employment, gifts, stock holdings or options, honoraria, consultancies, expert testimony, patents and royalties.&#x0D; &#x0D; Type: Idea Paper

Markers and measures of timeliness of cancer diagnosis after symptom onset: A conceptual framework and its implications

Adolescents and young adults (AYAs) are thought to experience prolonged intervals to cancer diagnosis, but evidence quantifying this hypothesis and identifying high-risk patient subgroups is insufficient. We aimed to investigate diagnostic timeliness in a cohort of AYAs with incident cancers and to identify factors associated with variation in timeliness.We did a cross-sectional analysis of the BRIGHTLIGHT cohort, which included AYAs aged 12–24 years recruited within an average of 6 months from new primary cancer diagnosis from 96 National Health Service hospitals across England between July 1, 2012, and April 30, 2015. Participants completed structured, face-to-face interviews to provide information on their diagnostic experience (eg, month and year of symptom onset, number of consultations before referral to specialist care); demographic information was extracted from case report forms and date of diagnosis and cancer type from the national cancer registry. We analysed these data to assess patient interval (time from symptom onset to first presentation to a general practitioner [GP] or emergency department), the number of prereferral GP consultations, and the symptom onset-to-diagnosis interval (time from symptom onset to diagnosis) by patient characteristic and cancer site, and examined associations using multivariable regression models.Of 1114 participants recruited to the BRIGHTLIGHT cohort, 830 completed a face-to-face interview. Among participants with available information, 204 (27%) of 748 had a patient interval of more than a month and 242 (35%) of 701 consulting a general practitioner had three or more prereferral consultations. The median symptom onset-to-diagnosis interval was 62 days (IQR 29–153). Compared with male AYAs, female AYAs were more likely to have three or more consultations (adjusted odds ratio [OR] 1·6 [95% CI 1·1–2·3], p=0·0093) and longer median symptom onset-to-diagnosis intervals (adjusted median interval longer by 24 days [95% CI 11–37], p=0·0005). Patients with lymphoma or bone tumours (adjusted OR 1·2 [95% CI 0·6–2·1] compared with lymphoma) were most likely to have three or more consultations and those with melanoma least likely (0·2 [0·1–0·7] compared with lymphoma). The adjusted median symptom onset-to-diagnosis intervals were longest in AYAs with bone tumours (51 days [95% CI 29–73] longer than for lymphoma) and shortest in those with leukaemia (33 days [17–49] shorter than for lymphoma).The findings provide a benchmark for diagnostic timeliness in young people with cancer and help to identify subgroups at higher risk of a prolonged diagnostic journey. Further research is needed to understand reasons for these findings and to prioritise and stratify early diagnosis initiatives for AYAs.National Institute for Health Research, Teenage Cancer Trust, and Cancer Research UK.

Physical and mental health status of female adolescent/young adult survivors of breast and gynecological cancer: a national, population-based, case-control study

Each year, nearly 21,000 adolescents and young adults (AYA) ages 15 to 29 years are diagnosed with cancer. Breast and gynecological cancers account for 25% of the cancers seen in AYA females. The purpose of this study was to compare the current physical and mental health status of female AYA cancer survivors with non-cancer female controls. Using data from the population-based 2009 National Health Interview Survey, 100 cases of female AYA survivors of breast and gynecological cancers were identified [female AYA cancer survivor (FCS) group]. FCS cases were matched with 300 female respondents without a history of cancer on age, education, marital status, and minority status [non-cancer control (NCC) group]. The FCS and NCC groups were compared on a range of physical and mental health status indices using analysis of covariance and binary logistic regression. FCS group reported significantly poorer physical and mental health status than the matched controls. Relative to the NCC group, FCS survivors had significantly poorer scores on 7 of 8 mental health outcomes and were more likely to meet criteria for serious psychological distress (odds ratio = 4.23, p ≤ 0.001). FCS group also reported greater lifetime and current prevalence of various medical conditions, more health-related disabilities, and greater functional limitations than the NCC group. Diagnosis of breast and gynecological cancer during adolescence and young adulthood is associated with clinically important deficits in physical and mental health status. Given the young age of this cancer survivor cohort, increased attention should be devoted to minimizing these deficits.

Preferences for support services among adolescents and young adults with cancer or a blood disorder: A discrete choice experiment

BackgroundLife-threatening illnesses in young people are traumatic for patients and their families. Support services can help patients and families deal with various non-medical impacts of diagnosis, disease and treatment. The aim of this study was to determine which types of support are most valued by adolescents and young adults (AYA) with cancer or blood disorders and their families. MethodA discrete choice experiment (DCE). Separate experiments were conducted with AYA and their carers. ResultsCompleted surveys were returned by 83 patients and 78 carers. AYA preferred emotional support for themselves (either by counsellors and/or peers), emotional support for their family, financial support and assistance returning to school/work over services relating to cultural and spiritual needs. Covariate analysis indicated female AYA were more likely than males to prefer emotional support, while males were more likely to prefer assistance returning to work/school. Carers preferred emotional support for their AYA and assistance returning to school/work. Like AYA, they were indifferent about services relating to cultural and spiritual needs. ConclusionProviding the types of support services that people prefer should maximise effectiveness. This study suggests that AYA patients require support services that included financial aid, assistance returning to work/study, emotional support for themselves and for their family.

Gender‐specific activity of chemotherapy correlates with outcomes in chemosensitive cancers of young adulthood

Good evidence indicates that adolescents and young adults (AYAs) with cancer do badly compared with children with similar cancers. The reasons are poorly understood. Australian registry data on 14,824 cancers of adolescence and young adulthood seen between 1982 and 2002 were reviewed. A detailed substudy of clinical characteristics was analyzed from 179 AYAs with Hodgkin lymphoma (HL), Ewing sarcoma (ES) or osteosarcomas (OS) treated at a single institution. Despite significant improvements in survival for both groups over the period in question, for acute lymphoblastic leukaemia, rhabdomyosarcoma, ES, OS and HL, survival for AYAs was worse than for children. For ES, OS and HL, the survival gap occurred almost entirely in males (Hazard ratios compared with female AYAs of 1.8 [p < 0.01], 1.4 [p = 0.03] and 1.5 [p < 0.01] respectively). Survival outcomes from ES, OS and HL for female AYAs were not significantly different from children of either sex. For brain tumors and thyroid cancers, which are primarily treated surgically, there were no gender-related differences in outcomes. Although no differences in tumor stage or compliance were identified, male AYAs experienced less toxicity and lower response rates to chemotherapy (p = 0.008). Young males account almost entirely for excess mortality from chemosensitive cancers of adolescence and young adulthood compared to children, which may be due to relative underdosing with current chemotherapy dosing algorithms.