Care For Adolescents And Young Adults Research Articles

Identifying the informational needs and sources of support of Adolescent and Young Adult (AYA) cancer survivors to inform the development of a digital platform.

This study aimed to examine the (age-specific) informational needs and support sources used by Adolescent and Young Adult (AYA) cancer survivors throughout their cancer trajectory and socio-demographic and clinical factors associated with most common AYA-related informational needs. A cross-sectional questionnaire study was conducted among AYA cancer survivors (mean, 10.3 years after diagnosis, SD = 5.6). Informational needs and sources of support were examined via open questions and analyzed via a thematic inductive approach. Responses on informational needs were categorized according to the AYA anamnesis of the Dutch AYA "Young & Cancer" Care Network used in clinical practice. Chi-square and ANOVA tests were performed to assess differences in socio-demographic and clinical characteristics among AYA cancer survivors based on their varying levels of informational needs. In total, 593 AYA cancer survivors were included (mean, 32.2 years at diagnosis, SD = 5.6). Most common informational needs were related to: family and children (23%), fertility and pregnancy (23%), work and reintegration (20%), peers with cancer (13%), and intimacy and sexuality (13%). Females, AYA cancer survivors diagnosed a longer time ago, those with a college/university education, those diagnosed with breast or hematological malignancies, and those treated with chemotherapy were more likely to have AYA-related informational needs. The most often used sources of support were healthcare professionals (76%), family (72%), social life (69%), and websites (47%). AYA cancer survivors have informational needs related to their life stage including topics like family and children, and fertility. Tailored information services and support are needed, including opportunities to connect with peers and support for relatives. By addressing the informational needs and sources of support for AYA cancer survivors, we can improve AYA care programs and empower AYA cancer survivors to better cope with the consequences associated with their disease. This study will help to inform the content of AYA websites and platforms and help AYA cancer survivors, relatives, and healthcare professionals to become more aware of the needs of AYA cancer survivors and facilitate better use of relevant information and support services.

“Aiming at a moving target”—The daily life experiences of adolescents and young adults with a low-grade glioma

Abstract Background Low-grade gliomas (LGG) are among the most frequently occurring tumors in adolescent and young adult (AYA) patients (aged 18–39 years old at primary diagnosis). These tumors have a variable prognosis, presenting challenges for patients in shaping their future. This study aimed to identify the age-specific experiences and needs of AYA patients with LGG in their daily lives. Methods In-depth interviews were conducted with AYA patients diagnosed with LGG. Thematic analysis was performed to derive the age-specific codes, looking for overarching themes and sub-themes. Results Sixteen patients participated in this study. The cognitive symptoms of the disease (including difficulty concentrating, memory issues, and speech problems) are invisible to others but caused significant disruptions in many domains that were particularly important to AYA patients (eg, employment, family life, and autonomy). Additionally, the uncertainty regarding their life expectancy led to difficulties in making decisions about the future. They also perceived a lack of control over their future and the time they had left. Conclusions LGG have a significant impact on AYA patients. However, this impact is not fully understood by others close to them. The results highlight the importance of providing these patients with appropriate peer support, interventions tailored to both their disease and life phase, utilizing a multidisciplinary approach, and maintaining a focus on long-term support for these patients. It is crucial to provide AYA care for these patients within the neurology department, as LGG involve both tumor- and age-specific problems.

Perspectives of non-physician partners on barriers and facilitators to AYA cancer care in Latin America.

Cancer is the fourth leading cause of death in adolescents and young adults (AYA) worldwide. Although successful treatment of cancer in AYA has increased in recent years in most of the world, this is not true for many low- and middle-income countries (LMIC) where over 80% of all AYA live. This study investigated the needs of AYA with cancer in parts of Latin America (LATAM) through the perspectives of non-physician health care providers and partners. Semi-structured interviews (in Spanish) were conducted with non-physician partners from Mexico, Peru, Central America, and the Caribbean over Zoom. Participants were recruited through previously identified local physicians and international non-physician professionals working in these countries. Transcripts were coded and key themes identified until thematic saturation was reached (Atlas.ti). Thirty participants representing eight countries were interviewed, providing 1202 min of transcript data. Data were organized into barriers, facilitators, and strategies to improve the delivery of health care for AYA with cancer in LATAM at the patient- (e.g., financial barriers, continued schooling), parent- (e.g., limited medical literacy, advocacy), and hospital-level (e.g., structural barriers, increasing funding). There are many similarities in the barriers and facilitators to AYA care between LATAM and high-income countries (HIC); however, some characteristics are more unique to LATAM, for example, strict age restrictions for pediatric care and abandonment of therapy. As LATAM countries continue to build cancer control programs, there is an opportunity to consider our identified barriers, facilitators, and strategies to address the unique needs of AYA with cancer.

Transitions of care for adolescents with disorders of gut-brain interaction.

Little is known about the experience of adolescents and young adults (AYA) with disorders of gut-brain interaction (DGBI) who transition from pediatric to adult gastroenterology care. In this two-part study, we used quantitative and qualitative methods to: (1) assess incidence of optimal versus suboptimal transitions of care for AYA with DGBI, (2) characterize health and quality of life effects of the transition, and (3) identify barriers and facilitators for optimal transition of care. In Part 1, we conducted a retrospective review of AYA referrals to our adult neurogastroenterology clinic who had transitioned from pediatric gastroenterology care (N = 109, 17-23 years, 72% female). We collected demographic, psychosocial, and healthcare utilization data to determine rate and risk factors for suboptimal transitions. In Part 2, we recruited 24 AYA and parents (n = 19 AYA, n = 5 parents) for completion of a survey and semistructured interview, which was analyzed using validated rapid qualitative analysis method. In Part 1, 20% (22/109) of AYA met the criteria for suboptimal transition of care, which was associated with treatment adherence concern and functional impairment. In Part 2, we identified two principal themes: (1) AYA's health and quality of life are impacted during the transition, and (2) parental involvement and collaboration with pediatric gastrointestinal (GI) are facilitators to successful transitions, whereas access to care and practice style change are barriers. AYA with DGBI have high rates of suboptimal care transitions, affecting their health and quality of life. Our study highlights the need for a comprehensive approach that incorporates parents and pediatric providers.

NASPAG Clinical Opinion: The Care of Transgender and Gender Nonbinary Adolescents and Young Adults

Transgender and gender nonbinary (TGNB) adolescents and young adults (AYA) may present to clinicians with reproductive health expertise for the spectrum of gynecologic, sexual, and reproductive care. As such, clinicians should be knowledgeable in the many facets of gender-affirming care. This clinical opinion reviews language associated with gender diversity and gender-affirming care; current clinical, social, and political barriers faced by TGNB AYA; and the creation of welcoming and inclusive clinical spaces for TGNB AYA. It discusses social, medical, and surgical affirmation processes, and focuses on gynecologic care topics which may arise in the care of TGNB AYA, including those who undergo medical or surgical therapies. This includes menstrual suppression, breakthrough bleeding on testosterone, sexual health, fertility, and the pelvic care of individuals following gender affirming vulvovaginoplasty.

Feasibility and Clinical Utility of Patient-Reported Outcome Measurement Information System-29 in a Newly Established Adolescent and Young Adult Oncology Program.

Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.

Contraception in Medically Complex Adolescents and Young Adults.

Contraception is a significant part of comprehensive sexual and reproductive health (SRH) care for adolescents and young adults (AYA). While providers may assume that AYA with chronic illness are not sexually active, studies have shown that there are no differences in their sexual practices compared to their counterparts without an illness. This assumption may result in less SRH screening, preventative services, and counseling by providers resulting in decreased basic sexual knowledge, increased risk of unplanned pregnancy, and other health disparities. Sexually active AYA with medical complexity are particularly in need of contraception for a variety of reasons. A better understanding of the complexities around contraception counseling can help increase utilization rates, improve shared-decision making around family planning, and reduce the stigma around sexual health counseling in this population. We have included three sections. First, a general overview of contraception methods. Next, an overview of contraceptive methods currently available, their efficacy, and medical eligibility criteria for their use in AYA who have certain characteristics or medical conditions. Finally, cases adapted from real clinical scenarios to highlight specific recommendations for contraception in AYA women living HIV, autoimmune conditions, and those who have received a solid organ transplant. This information will help providers to consider the multiple factors that influence contraception decision-making (including clinical status, thrombosis risk, medication interactions, safety), and optimize care for AYA living with chronic illness.

Addressing the Transition to Adult Health Care for Adolescents and Young Adults with Pancreatic Disorders.

The transition from pediatric to adult health care is a vulnerable time period for adolescents and young adults (AYA).Guidance on how to effectively implement transition support for AYA with recurrent acute pancreatitis (RAP) and chronic pancreatitis (CP) is lacking. To address this gap, we formed a consortium of pancreatic centers that would work in coordination to test interventions to improve the transition for AYA with RAP and CP.We then performed a baseline assessment of consortium resources and patient transition readiness and developed an educational toolkit for AYA with RAP and CP. Results:Our consortium consists of three National Pancreatic Centers of Excellence, each with a multidisciplinary team to work with AYA with RAP and CP.While our patients ages 18 to 23 were generally seen at the pediatric centers, the baseline assessment of transition readiness suggests that our patients may have higher transition readiness scores than other populations.The educational toolkit contains both pancreas-specific and general guidance to support AYA with RAP and CP during their transition, including guidance on nutrition, pain management, and finding an adult gastroenterologist. Conclusions:We have formed a consortium to test interventions to improve the transition to adult health care for AYA with RAP and CP.We have completed a baseline assessment and developed our first intervention: an educational tool kit.Future work planned includes tests of the tool kit and efforts to improve rates of transfer to an adult provider for YA with RAP and CP.

COCCOS study: Developing a transition program for adolescents with chronic conditions using Experience-Based Co-Design. A study protocol.

During adolescence, adolescents and young adults (AYAs) are expected to transfer their care from the pediatric environment towards an adult-focused setting. To prevent an abrupt transfer of care, it is recommended to provide AYAs with chronic conditions an adequate transition program. The aim of this paper is to describe the study protocol for the development of a transition program for AYAs with common chronic conditions (COCCOS study), using the Experience-Based Co-Design (EBCD) methodology. A qualitative, participatory study is conducted in Flanders (Belgium). Study participants are AYAs (n≥15, 14-25 years old, diagnosed with type 1 diabetes, asthma, or obesity), their families, and healthcare providers (n≥15). The study is composed of eight EBCD stages: clinical site observations, in-depth interviews, trigger film, healthcare providers' feedback event, AYAs' feedback event, joint event, co-design workshops, and a celebration event. Photovoice will take place as a starting point of EBCD. Data will be analyzed using thematic analysis. Data collection has started in January 2023 and is expected to be completed in May 2024. As of August 2023, over 15 clinical site observations have been conducted. A total of 18 AYAs, two parents, six healthcare providers have been enrolled and a total of 20 interviews have been conducted. Advancing transitional care is essential for tackling negative health outcomes. Applying the innovative participatory EBCD methodology will reveal key elements of transitional care for AYAs with common chronic conditions in the development of a person-centered transition program. Study findings will apply key elements of transitional care of AYAs with chronic conditions in the development of an adequate transition program.

Breathing across ages: a systematic review on challenges and components of transitional care for young people with asthma.

Asthma is a chronic condition that affects millions of adolescents and young adults (AYA) worldwide. The transition from pediatric to adult care presents unique challenges for this population, affecting their self-management, quality of life and overall health outcomes. This systematic review aims to consolidate the available evidence on challenges encountered by AYA with asthma during the transition period from child to AYA and on the key elements of transitional care for AYAs with asthma including the outcomes achieved, ultimately enhancing outcomes. A systematic literature search was performed in PubMed, Embase, Medline, Scopus, and Web of Science from their inception to October 2, 2023, to provide an overview of currently available literature. Primary quantitative and qualitative studies, published in peer-reviewed journals that focused on AYA with a confirmed diagnosis of asthma were considered if they focused on challenges encountered by AYA with asthma during the transition process and/or components of transitional care and their outcomes assessed. A total of 855 studies were initially identified and 6 articles were included in this systematic literature review. Several challenges experienced by AYA with asthma were identified including maintaining medication adherence, the need to take responsibility and being involved, understanding their condition and its severity, feeling left out of the care system, and experiencing a lack of engagement. The identified transitional care components included a standardized form for medical data transmission, a joint consultation and to offer several longer consultations. Several international guidelines for asthma care recommend implementing transition programs in the care for AYA with asthma. Such transition programs should include a comprehensive and individualized approach addressing several challenges faced, to ensure optimal outcomes post-transition. However, to date, data on effective components of transitional care facilitating good outcomes were found to be limited. This systematic review underscores the need for larger studies evaluating the effect of the components of transition programs.

Preferences and experiences of parents/guardians of youth with epilepsy and intellectual disability on reproductive health counseling

ObjectiveTo explore the experiences and preferences of parents/guardians of adolescents and young adults (AYA) of childbearing potential with co-occurring epilepsy and intellectual disability (ID) regarding counseling by neurologists on sexual and reproductive health (SRH) topics such as pregnancy, contraception, menstruation, and folic acid supplementation. MethodsWe conducted semi-structured interviews with parents/guardians of AYAs (12–28 years old) of childbearing potential with co-occurring epilepsy and ID, recruited from a tertiary-care children’s hospital. We confirmed the diagnoses of epilepsy and ID with the patient’s neurologist and parent/guardian. All degrees of ID (e.g. mild/moderate/severe) were eligible. We audio-recorded and transcribed interviews. Two coders performed qualitative thematic analysis. ResultsTwenty-five parents/guardians completed interviews. Themes included: (1) Parents/guardians believe their child to be immune from sexual abuse due to their supervision, yet desire counseling about abuse recognition and prevention, which they also report not occurring (2) A common opinion was that counseling on menstruation was more relevant to their child's life than counseling about pregnancy-related topics (3) Parents/guardians reported a lack of counseling on pregnancy-related topics such as folic acid supplementation and teratogenesis and generally also reported some degree of interest in hearing about these topics from neurologists (4) Parents/guardians also reported a lack of counseling on drug interactions between contraception and ASMs, and were highly interested in learning more about this topic (5) Parents/guardians want neurologists to initiate annual comprehensive SRH counseling at puberty about most topics, but report that they often initiate SRH discussions themselves. ConclusionParents/guardians of AYAs with epilepsy and ID prefer more frequent, neurologist-initiated, comprehensive conversations surrounding SRH particularly emphasizing menstruation and sexual abuse recognition/prevention. Findings may inform professional and patient education and health systems interventions including development of discussion guides and/or decision aides to improve SRH care for AYAs with epilepsy and ID.

Acute lymphoblastic leukemia in young adults: which treatment?

Despite improvements in survival among pediatric patients with acute lymphoblastic leukemia (ALL), survival outcomes for adolescents and young adults (AYAs) with ALL have lagged. The reasons for the inferior outcomes among AYAs are multifactorial, each presenting unique challenges and requiring novel solutions. First, adverse disease biology is more common among AYAs with ALL. Ongoing trials are investigating novel approaches to treatment, such as incorporating JAK inhibitors for Philadelphia chromosome-like ALL, menin inhibitors for KMT2A-rearranged ALL, and BCL2/BCLXL inhibition for T-cell ALL. Poorer adherence to therapy also impedes improvements in survival outcomes for AYAs with ALL, but early data suggest that technology, both for monitoring and interventions, may be useful in increasing adherence among this population. Finally, better access to clinical trials and collaboration between pediatric and adult centers is critical in advancing the care of AYAs with ALL. Significant improvements have been made over the past decade, but recognizing, understanding, and addressing each of these unique challenges provides hope that the outcomes for AYAs will continue to improve even further.

Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature.

Access to care remains a persistent challenge for adolescents and young adults (AYAs) with cancer. We review key findings in the science to date. (1) Location of care matters. There is survival benefit for AYAs treated either at a pediatric center or site with special status (eg, Children's Oncology Group, National Cancer Institute [NCI]-designated Comprehensive Cancer Center). (2) Socioeconomic status and insurance require further investigation. Medicaid expansion has had a moderate effect on AYA outcomes. The dependent care expansion benefit has come largely from improvements in coverage for younger populations whose parents have insurance, while some subgroups likely still face insurance gaps. (3) Clinical trial enrollment remains poor, but access may be improving. Numerous barriers and facilitators of clinical trial enrollment include those that are system level and patient level. NCI has established several initiatives over the past decade to improve enrollment, and newer collaboratives have recently brought together multidisciplinary US teams to increase clinical trial enrollment. (4) Effective AYA programs require provider and system flexibility and program reflection. With flexibility comes a need for metrics to assess program effectiveness in the context of the program model. Centers treating AYAs with cancer could submit a subset of metrics (appropriate to their program and/or services) to maintain their status; persistence would require an entity with staying power committed to overseeing the metrics and the system. Substantial clinical and biological advances are anticipated over the next 20 years that will benefit all patients with cancer. In parallel, it is crucial to prioritize research regarding access to health care and cancer care delivery; only with equitable access to care for AYAs can they, too, benefit from these advances.

Understanding identity construction among deaf adolescents and young adults: implications for the delivery of person and family-centered care in audiological rehabilitation.

The provision of holistic person and family-centered care in the audiological rehabilitation of adolescents and young adults (AYA) requires in-depth consideration of identity construction. The purpose of this research study was to describe the lived experience of identity construction among deaf AYA. The thoughts, perceptions, and feelings of AYA on their identity and the processes underlying the construction of identity, with a focus on navigating disability, social relations and roles, community assimilation and self-perception were explored. A qualitative interpretive phenomenological approach was adopted. Participants were a purposive sample of 5 AYA, aged 15 to 19 years. Participants had moderate to profound deafness and were enrolled in schools for the deaf where they partook in semi-structured phenomenological conversations, detailing their lived experiences with identity construction. The superordinate themes of creating a self-concept, belonging, stress and being deaf emerged from participants' narratives. Identity construction occurs concurrently at several levels. At the personal level, AYA create self-conceived ideals of who they are. At relational level, identity is fostered through person-to-person and person-to-group interactions. At societal level, AYA navigate inherent challenges with hearing impairment and their positionality as deaf individuals. Understanding the nuances of identity construction gives insights for further research and highlights the self-ascribed identity domains and related psychosocial variables that appeal to person and family-centered care, uncovering opportunities and barriers to successful delivery. Findings have implications for the transitional care of deaf AYA that is responsive to their needs.

Improving Supportive and Palliative Care Integration in Adolescent and Young Adult Cancer.

Purpose: Timely supportive and palliative care (SPC) integration in adolescent and young adult (AYA) cancer management is recommended in curative and palliative settings. However, multiple barriers exist to implementing this goal. Liverpool Cancer Therapy Center (LCTC) serviced a growing AYA (15-39 years) population without AYA-dedicated services and the vast majority receiving no SPC engagement. Concerned this was placing AYA patients' wellbeing at risk, we determined a cultural change was required and that the newly established AYA Supportive and Palliative Care (AYASPC) Service could facilitate this. Methods: The AYASPC Service conducted a 6-month quality improvement project aiming to increase its referrals from a baseline average of one per month to four per month, to increase confidence in making SPC referrals and to enhance appreciation for specialized AYA care. Interventions included formalizing an AYASPC referral pathway with broad indications, and educating clinicians on holistic AYA care, the AYASPC Service's model of care (MoC) and AYASPC referral benefits. Results: During the project, 27 AYASPC referrals were made. Referrals consistently exceeded the Service's baseline, and from 3 months onward exceeded the project target. Additionally, referrals were made earlier (29.6% at diagnosis), for a variety of cancer diagnoses with varied prognoses, and for indications beyond traditional issues of complex symptoms and end-of-life care. Clinicians also expressed greater confidence in supporting AYAs and making SPC referrals. Conclusion: In a brief timeframe, the AYASPC Service's innovative and adaptable MoC and project interventions sustainably improved AYASPC access and affected a positive cultural shift around AYA care and advocacy.

Role of primary care in enhancing continuity of care for adolescents and young adults with chronic kidney disease undergoing transition to adult health services.

The transition from pediatric to adult health care is a vulnerable period for adolescents and young adults (AYA) with chronic conditions as it involves a multitude of changes and challenges while they enter adulthood. The transition to adult care can be particularly challenging for AYA living with chronic kidney disease (CKD) due to the complex care needed for treatment. Continuity of care is crucial for a successful transition to adult health care. The aim of this educational review is to discuss the potential role of primary care providers in the transition from pediatric to adult health services for AYA with CKD and kidney failure treated with dialysis and/or transplant. We address the significance of the medical home model and how it can provide continuity of care for AYA with CKD. Primary care providers can enhance care for AYA with chronic conditions by providing continuity of care, reducing exacerbation of chronic health conditions, providing holistic care, and fostering collaboration with specialists. Despite their vital role, primary care providers face barriers in maintaining this continuity, necessitating further attention and support in this area. By addressing these barriers and encouraging primary care providers to work alongside pediatric and adult nephrologists during the transition to adult health care, there are significant opportunities to improve the care and health outcomes of AYA with CKD.

Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey.

It is well documented that traditional health care models do not meet the specific needs of Adolescents and Young Adults (AYA) cancer patients. We explore a map of the development of age-specific AYA cancer care across Europe, from the perspective of healthcare professionals with an interest in AYA care, in order to understand the specific challenges and map progress over time. An on-line survey was developed by international professional cancer organisations. We had 377 respondents from 60 countries. The majority of respondents were physicians 298 (79%), a minority of survey respondents (39, 10.4%) work exclusively with AYA patients, most respondents declared substantial and routine clinical service collaborations to provide care and treatment to AYA with cancer. Policy for the multidisciplinary management of AYA cancer patients commonly appears in Europe now, and was reported by 234 (78.52%) respondents. Specific professional training for AYA cancer care is not uniformly available. There is considerable opportunity for many organisations to work together in raising the profile of AYA cancer related issues, in providing education and in encouraging research and collaboration.

Quality Indicators for Adolescents and Young Adults With Advanced Cancer: A Modified Delphi Process With Patients, Family Members, and Clinicians.

Quality measures have been devised for end-of-life care of older adults with cancer, but are lacking for adolescents and young adults (AYAs). We previously conducted interviews with AYAs, family caregivers, and clinicians to identify priority domains for high quality care of AYAs with advanced cancer. The goal of this study was to use a modified Delphi process to form consensus around the highest priority quality indicators. A modified Delphi process was conducted with 10 AYAs with recurrent or metastatic cancer, 11 family caregivers, and 29 multidisciplinary clinicians, using small group web conferences. Participants were asked to rate the importance of each of 41 potential quality indicators, rank the 10 most important, and engage in discussion to reconcile differences. Of 41 initial indicators, 34 were rated as highly important (rating seven, eight, or nine on a nine-point scale) by >70% of participants. The panel was unable to reach consensus around the 10 most important indicators. Instead, participants recommended retaining a larger set of indicators to reflect potential for different priorities across the population, resulting in a final set of 32 indicators. Recommended indicators broadly encompassed attention to physical symptoms; quality of life; psychosocial, and spiritual care; communication and decision-making; relationships with clinicians; care and treatment; and independence. A patient- and family-centered process for quality indicator development led to strong endorsement of multiple potential indicators by Delphi participants. Further validation and refinement will be performed using a survey of bereaved family members.

Diabetes-Focused Health Care Utilization Among Adolescents and Young Adults With Type 1 Diabetes

ObjectiveTo describe the current rates of health services use with various types of providers among adolescents and young adults (AYA) with type 1 diabetes (T1D) and evaluate which patient factors are associated with rates of service use from different provider types. MethodsUsing 2012–16 claims data from a national commercial insurer, we identified 18,927 person-years of AYA with T1D aged 13 to 26 years and evaluated the frequency at which: 1) AYA skipped diabetes care for a year despite being insured; 2) received care from pediatric or non-pediatric generalists or endocrinologists if care was sought; and 3) received annual hemoglobin A1c (HbA1c) testing as recommended for AYA. We used descriptive statistics and multivariable regression to examine patient, insurance, and physician characteristics associated with utilization and quality outcomes. ResultsBetween ages 13 and 26, the percentage of AYA with: any diabetes-focused visits declined from 95.3% to 90.3%; the mean annual number of diabetes-focused visits, if any, decreased from 3.5 to 3.0; receipt of ≥2 HbA1c tests annually decreased from 82.3% to 60.6%. Endocrinologists were the majority providers of diabetes care across ages, yet the relative proportion of AYA whose diabetes care was endocrinologist-dominated decreased from 67.3% to 52.7% while diabetes care dominated by primary care providers increased from 19.9% to 38.2%. The strongest predictors of diabetes care utilization were younger age and use of diabetes technology (pumps and continuous glucose monitors). ConclusionsSeveral provider types are involved in the care of AYA with T1D, though predominate provider type and care quality changes substantially across age in a commercially-insured population.

Learning from long-term adolescent and young adult (AYA) cancer survivors regarding their age-specific care needs to improve current AYA care programs.

Despite growing (inter)national awareness and appreciation, age-specific care is still not always self-evident and accepted as standard of care for adolescent and young adult (AYA) cancer patients. It is unknown whether long-term AYA cancer survivors have missed age-specific care, and if so, which survivors missed it and regarding which topics. The Netherlands Cancer Registry (NCR) identified all long-term AYA cancer survivors (aged 18-39 years at initial cancer diagnosis, 5-20 years past diagnosis) in the Netherlands, who were invited to participate in a population-based, observational, cross-sectional questionnaire study (SURVAYA study), including questions on care needs. In total, 3.989 AYAs participated (35.3% response rate). One-third of them had a need for age-specific care (33.5%), 41.2% had no need and 25.3% did not know whether they had a need. Those who had a need for age-specific care were significantly more often female, higher educated, diagnosed at a younger age, and treated with chemotherapy, radiotherapy or hormone therapy. Most frequent topics were disease and treatment (29.7%), emotions (24.1%), friends (22.6%), family and children (15.6%), fertility and pregnancy (14.8%), work and reintegration (10.5%), care not tailored (13.8%), and overarching care and life (27.7%). Palliative care (0.0%), spirituality (0.2%), death (0.7%), complementary care (0.7%), and late effects (1.3%) were mentioned least. A substantial proportion of long-term AYA cancer survivors showed a need for age-specific care, varying by sociodemographic and clinical factors, on a wide variety of topics, which could be targeted to improve current AYA care services.