NIH – End-of-Life and Palliative Needs of Adolescents and Young Adults (AYA) with Serious Illnesses (R01 Clinical Trial Optional)

The purpose of this funding opportunity announcement (FOA) is to foster research on the unique perspectives, needs, wishes, and decision-making processes of adolescents and young adults (AYA; defined by the World Health Organization and the Centers for Disease Control and Prevention as youth between 12 – 24 years of age) with serious, advanced illnesses; and research focused on specific end-of-life/palliative care (EOLPC) models that support the physical, psychological, spiritual, and social needs of AYA with serious illness, their families and caregivers. The objective is to support targeted clinical studies aimed at: 1) increasing this knowledge base, 2) the development of AYA-appropriate measurement tools and, 3) the design, testing, and evaluation of AYA-specific EOLPC models of care, and interventions that positively impact health -related quality of life for AYA with serious illness and their families/caregivers. The intent of EOLPC is multifaceted and includes care that seeks to prevent, relieve, reduce or soothe disease-related symptoms, mitigating the impact of co-morbidities, and enabling a positive influence across the course of illness and eventual death, for patients and their family caregivers. EOLPC may integrate the emotional, psychological, social, and physical aspects of care with a focus on enhanced quality of life. This FOA will advance the science of EOLPC in AYA, where age-specific and developmentally appropriate EOLPC care strategies that meet the needs of this population are understudied, despite a growing emphasis to address their unique needs.

Background

This FOA is responding, in part, to a recent Institute of Medicine (IOM) report and a recent workshop. In September of 2014 the IOM released the report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, which called for the development of guidelines and research in adolescent EOLPC stating the need for, “. . . an increased understanding of ways to improve participation in effective advance care planning and shared decision making among patients and families, including seriously ill children and adolescents, who may be able to participate in end-of-life decision making on their own behalf.” Further, the report recommended that AYA “. . . should have the opportunity to participate actively in their health care decision making throughout their lives and as they approach death, and receive medical and related social services consistent with their values, goals and informed preferences.” The workshop, “The Spectrum of Caregiving and Palliative Care in Serious, Advanced, Rare Diseases” hosted by the NINR and the NCATS Office of Rare Diseases Research (ORDR), examined the current state of the science and identified knowledge gaps with regard to palliative care needs for patients and caregivers. Among the issues brought forth was a need to develop AYA-appropriate EOLPC support models and interventions that are not only based on chronological age, but also on developmental stage, psychosocial needs and emotional maturity; as well as the need to understand how AYA comprehend their illness, and how they approach and make decisions regarding advanced illness care across the developmental and disease spectrum.

Beginning at time of diagnosis, adolescents and young adults with serious illnesses experience unique vulnerabilities, complex health concerns, and barriers to accessing palliative and/or hospice care. Medical advancements have led to an increased prevalence of children with serious illnesses who are now surviving into adolescence and young adulthood, and research indicates that these youth present with more advanced or complicated conditions than younger age groups. As a result, the need for EOLPC for this population is increasing despite limited research in this area. Many of these AYAs age into adult palliative or hospice care programs without a timely transition to appropriate young adult services. This deficiency in end-of-life and palliative care across the disease trajectory impacts the quality of life for AYA, their families and caregivers. According to the American Academy of Pediatrics (AAP), palliative care for adolescents and young adults should be patient centered and family engaged, offering a respectful partnership that is concerned about quality, access, and equity. Specifically, the AAP recommends that ‘pediatric’ palliative care offer support across the age spectrum and life span. However, data show that 72 percent of adolescents die in ICUs without receipt of palliative care, even though the vast majority of AYA have discussed advance care plans about EOL issues and indicated preferences to die in their homes or hospice settings. This underscores that few AYA and their families access the full benefits and support of EOLPC services.

Despite the need for evidence-based knowledge to support the development of appropriate models of support and care for AYA with serious, advanced illnesses and their family caregivers, limited research exists on the unique needs, perspectives and decision-making processes of these individuals. Because statistical analyses of research generally group a large proportion of AYA with ‘all children’ (0 – 18 years), it is difficult to discern their specific palliative and end-of-life care needs. Of the few studies that focused specifically on AYA palliative or hospice care, a majority were written by just two authors – illustrating a lack of depth in the field. The few published studies note that AYA who receive EOLPC services benefit from this care – they are less likely to receive invasive procedures, take fewer medications, and are less likely to die in the ICU. Still needed, however, are evidence-based interventions that clearly discern the unique needs of these emerging young adults, and offer AYA-specific strategies to support the EOLPC needs of these youth, their families and caregivers.

Research Objectives

Research projects should include studies that incorporate variables such as: age, developmental stage, emotional maturity, diagnosis, prognosis, uncertain disease trajectory, sex/gender, culture/ethnicity, socioeconomic status, geographic location, language, and family structures, among other parameters. Studies may also consider differences across time points and disease progression, as well as ways in which EOLPC and planning can adapt to meet changing needs.

Research projects of interest include, but are not limited to, those that:

  • Examine the unique perspectives, preferences/needs/wishes and decision-making processes of AYA living with advanced, serious illness.
  • Characterize AYA-specific processes in comprehending advanced, serious illness to better understand how AYA can contribute to decisions around their care and end-of-life preferences.
  • Determine AYA-specific psychosocial effects of an advanced, serious illness diagnosis (e.g. body image, self-esteem or reintegration into ‘normal’ life) and the impact on their families and caregivers.
  • Distinguish significant transition points for AYA across the spectrum of the disease trajectory.
  • Develop AYA-appropriate models of care to improve care continuity, ease care transitions and care coordination, and referral to EOL care with the goal of improving quality of life for AYA and their families and caregivers.
  • Identify knowledge gaps in AYA-specific developmental, cultural, social, educational, and language differences that impact the use of EOLPC services and resources.
  • Design, test, evaluate, and compare AYA-specific EOLPC interventions or models of care that support the physical, sociocultural, psychological, spiritual, and/or social needs of AYA, their families and caregivers, with the aim of improving quality of life and family satisfaction with care.
  • Investigate and determine appropriate language, terminology, and timing for EOLPC communication between clinicians and AYA, families/caregivers and AYA, families/caregivers and clinicians.
  • Design and test communication strategies/interventions to improve communication between clinicians and AYA, families/caregivers and AYA, families/caregivers and clinicians, with the aim of decreasing discordance, improving quality of life, and increasing satisfaction with care for AYA and families/caregivers.
  • Develop reliable and valid AYA-appropriate screening/measurement methods, instruments or tools such as those for early detection of physical, emotional, and/or psychosocial symptoms, non-adherence to treatment, need for referral to palliative care or hospice, health-related quality of life, or measurement of family well-being, among other considerations, in AYA living with advanced illness and/or approaching death.
  • Consider ethical concerns surrounding AYA involvement in family-centered advance care planning, and/or create tools/strategies/guidelines for managing discordance between AYA, families and/or health care providers.
  • Develop and test AYA-appropriate innovative technologies for use in palliative and/or hospice care models.
  • Develop AYA-appropriate metrics to determine the optimal timing of referral to palliative and/or hospice teams.

Interdisciplinary collaborations that include nurse scientists in the project team are strongly encouraged.

Deadlines:  standard dates and standard AIDS dates apply

URL:  https://grants.nih.gov/grants/guide/pa-files/PAR-19-136.html