Context: Early integration of palliative care (PC) into adult oncology practice has been shown to improve quality of life and health care utilization; however, little is known about PC in young adults with cancer.
Objectives: Our primary objective was to determine rates and timing of PC consultation in young adult patients with advanced solid tumor cancer at a single institution.
Methods: We conducted a retrospective analysis of young adults of age 18–39 years with advanced solid tumor malignancy at an urban academic medical center between June 1, 2014 and June 30, 2015.
Results: Of 129 patients identified, 70 of 129 (54%) had a PC consult and 34 of 70 were inpatient-only consults. PC consults occurred for a median of 104 days before death, and for those with inpatient-only consults, PC consults occurred for a median of 18 days. Patients with worse recent Eastern Cooperative Oncology Group (ECOG) performance status were more likely to have had a PC consult (p < 0.001). Of the patients who died during the study period, patients with PC consults were more likely to have been hospitalized (72% vs. 47%), in the intensive care unit (21% vs. 0%), in the emergency room (ER) (72% vs. 47%), and have received chemotherapy (17% vs. 0%) within 30 days of death compared with those who did not have a consult; however, these differences were not statistically significant.
Conclusion: In this analysis, over half of young adults with advanced solid tumors received PC consults. PC consult typically occurred for one year after diagnosis and about three months before death. Additional research is needed to identify how to better integrate PC early in this patient population and assess the resulting impact.
BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory.
METHODS: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements.
RESULTS: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making.
CONCLUSIONS: The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition.
OBJECTIVE: The diagnosis of an advanced cancer in young adulthood can bring one's life to an abrupt halt, calling attention to the present moment and creating anguish about an uncertain future. There is seldom time or physical stamina to focus on forward-thinking, social roles, relationships, or dreams. As a result, young adults (YAs) with advanced cancer frequently encounter existential distress, despair, and question the purpose of their life. We sought to investigate the meaning and function of hope throughout YAs' disease trajectory; to discern the psychosocial processes YAs employ to engage hope; and to develop a substantive theory of hope of YAs diagnosed with advanced cancer.
METHOD: Thirteen YAs (ages 23-38) diagnosed with a stage III or IV cancer were recruited throughout the eastern and southeastern United States. Participants completed one semi-structured interview in-person, by phone, or Skype, that incorporated an original timeline instrument assessing fluctuations in hope and an online socio-demographic survey. Glaser's grounded theory methodology informed constant comparative methods of data collection, analysis, and interpretation.
RESULTS: Findings from this study informed the development of the novel contingent hope theoretical framework, which describes the pattern of psychosocial behaviors YAs with advanced cancer employ to reconcile identities and strive for a life of meaning. The ability to cultivate the necessary agency and pathways to reconcile identities became contingent on the YAs' participation in each of the psychosocial processes of the contingent hope theoretical framework: navigating uncertainty, feeling broken, disorienting grief, finding bearings, and identity reconciliation.
SIGNIFICANCE OF RESULTS: Study findings portray the influential role of hope in motivating YAs with advanced cancer through disorienting grief toward an integrated sense of self that marries cherished aspects of multiple identities. The contingent hope theoretical framework details psychosocial behaviors to inform assessments and interventions fostering hope and identity reconciliation.
Palliative care (PC) serves a valuable role throughout the disease trajectory for adolescents and young adults (AYAs) living with cancer. A 3-year retrospective chart review was performed to characterize AYA PC referral patterns in patients aged 18-39 years to identify strategies for improving PC access. Despite known benefits, AYA referrals to PC during oncologic treatment occurred only for a small percentage of eligible patients (8.4%), largely occurred in the inpatient setting (73%), and were more likely in specific cancer types with high symptom burden and/or poor survival, with the greatest penetrance noted in lung cancer (51%).
OBJECTIVE: This pilot study set out to evaluate the feasibility and efficacy of an interactive, peer-led, health engagement workshop to improve confidence and comprehension related to advance care planning (ACP) among young adults. Secondarily, this study evaluated if such workshops could promote ACP related behavior changes within this population.
METHODS: This observational cohort study utilized a repeated measures, mixed-method design. Six hour-long, in-person workshops were conducted with undergraduate students during meetings of university student organizations. Participants were evaluated across 3 mixed-method surveys, evaluating confidence, knowledge, and behaviors related to ACP prior to participation, directly after, and during a 2-week follow-up.
RESULTS: Workshop participation improved the average participant confidence and knowledge related to ACP as well as encouraged some participants to engage in discussions related to end-of-life care with friends and family. Alongside the impact of the workshops on knowledge and confidence, participants positively evaluated the design of the workshops through collected qualitative feedback.
CONCLUSION: These results are encouraging in assessing this population's willingness to learn about end-of-life care planning. The tools developed and the corresponding results should be used for further exploration of engaging the young adult population in ACP to promote improved healthcare outcomes.
Objective: To engage young adults (18–35 years of age) with life-limiting neuromuscular conditions, their parents, and health and community providers in the development of a public health approach to palliative care. A public health approach protects and improves health and wellness, maximises the quality of life when health cannot be restored and improves the quality, scope and accessibility of age-appropriate care and services.
Methods: Group concept mapping (GCM) was used to determine the most important priorities for these young adults. GCM involves three district phases: (1) brainstorming ideas, (2) sorting and rating ideas based on level of importance and (3) analysing and interpreting concepts maps. Online software was used to collect information for phases 1 and 2 and develop concept maps. In phase 3, a face-to-face workshop, participants analysed and interpreted the concept maps. The combination of online and face-to-face research activities offered the needed flexibility for participants to determine when and how to participate in this research.
Results: Through this three-phase patient engagement strategy, participants generated 64 recommendations for change and determined that improvements to programming, improvements to funding and creating a continuum of care were their most important priorities. Five subthemes of these three priorities and development of the concept map are also discussed.
Conclusion: This research demonstrates the unique perspectives and experiences of these young adults and offers recommendations to improve services to enhance their health and well-being. Further, these young adults were integral in the development of recommendations for system changes to match their unique developmental needs.
BACKGROUND: Advanced cancer in young parents (PWAC) can increase dying concerns, the fluctuating thoughts, or feelings, conscious, or unconscious, about an approaching death by a person facing a terminal illness or a family member coping with the impending death of a loved one. However, limited research has been conducted to identify dying concerns in an ill parent as the research has focused on older adults.
OBJECTIVE: Our goal was to identify dying concerns that PWAC are expressing and to understand how these concerns affect measurable outcomes.
METHOD: CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection were searched. Articles included were samples of PWAC, peer-reviewed, and published within the last 10 years. Elderly or pediatric populations, PWAC with adult children, and early-stage cancer were excluded. The initial search resulted in 1,526 articles, 18 were identified as potentially relevant. Fourteen articles were identified and reviewed.
RESULTS: PWAC expressed concerns for their children (n = 11), concerns for their co-parent (n = 4), and personal concerns (n = 11). Additionally, PWAC have decreased quality of life, have significant emotional and psychological distress, and have increased family dysfunction in relation to their concerns. Samples limit the generalizability of the findings. Majority of the articles consisted of White, upper, middle-class (n = 8) women (n = 7) diagnosed with breast cancer (n = 11) within nuclear families (n = 11).
SIGNIFICANCE OF RESULTS: Dying concerns are described in the literature from a fairly narrow sample of PWAC. Future research should focus on recruiting participants from diverse backgrounds, genders, diagnosis types, and non-nuclear families. Identifying concerns for the co-parent would also add to the understanding of dying concerns.
The complexities surrounding the dying process may distort rational decision-making and impact care at the end of life. Advance care planning, which focuses on identifying the individual's definition of quality of life, holds great potential to provide clarity at the end of life. Currently, young adults are not the intended audience for advance care planning. A quality improvement project engaged 36 college-age adults in structured group advance care planning discussions and evaluated the perceived value of a self-recorded advance directive. Findings from a pre- and postintervention survey suggested that young adults welcomed a conversation about end-of-life care; they wished for more information and expressed that a video-recorded advance directive stimulated thoughts about their own definition of quality of life. Participants' improved self-perception of comfort, confidence, certainty, and knowledge regarding the advance care planning process and end-of-life care indicated young adults may be a willing and eager population for the expansion of advance care planning. In addition to directing advance care planning to a younger audience, a personal video-recorded advance directive may complement the current advance care planning process and aid individuals in defining their quality of life.
This paper explores how young people who are living with a parent who is dying talk about the future. Drawing on a qualitative, interview study, I argue that young people are able to move imaginatively beyond the death of a parent, and in doing so, to maintain a sense of biographical continuity. While thinking about the future, most were able to generate an alternative to the ‘harm story’ typically associated with parental loss. Furthermore, the facility to engage with parental absence in the present enabled young people to make sense of living with dying, and gave meaning to their imagined futures. These findings suggest that young people's narratives of the future may act as a symbolic resource to draw on, albeit one requiring adequate material and social resources to construct. The paper extends the notion of continuing bonds derived from post-bereavement accounts to suggest that relational experiences of the dead begin prior to bereavement, and may facilitate everyday living in anticipation of significant loss. Enabling young people to imaginatively explore the future may support them in getting by when they are living in these difficult family circumstances.
Objective: The research project addressed the need to support young adults with issues relating to sexuality and relationships though the development of guidance and standards for practice.
Methods: An action research project underpinned by an interpretivist qualitative framework. Participants were recruited to the project via three hospices in the UK. Data from four focus groups were analysed thematically using a process of constant comparison.
Results: Sixteen young adults with life-limiting or life-threatening conditions aged 21–33 years participated in the study. Three significant themes were identified: sexuality and the transition to adulthood, recognising the significance of sex and relationships, and realising sexual rights.
Conclusion: Sexuality and relationships play an important role in the transition to adulthood for people with life-limiting or life-threatening conditions living in the UK. While young adults with these conditions may have considerable support needs, it is important to balance this with the freedom to exercise choice and to make independent decisions. Sex negativity can have an adverse impact on the experiences of young adults and creates barriers. Improved ongoing access to sex education and the provision of enabling environments that afford privacy and safety are important to support young adults with sexuality and relationships.
Stella Grant a dix-sept ans, et elle a passé une bonne partie de sa vie à l'hôpital. Atteinte de mucoviscidose, elle maîtrise scrupuleusement sa situation, enchaînant les to-do list, suivant ses traitements et les recommandations des médecins à la lettre. Alors qu'elle attend une greffe de poumons, elle retourne à l'hôpital pour quelques semaines. Alors qu'elle suit sa routine quotidienne, elle rencontre un nouveau patient, Will, atteint par la même maladie qu'elle.
Malheureusement, le jeune homme souffre également d'une bactérie fatale qui lui interdit toute chance d'obtenir une greffe de poumons. Si Stella l'attrape, elle peut dire adieu à la greffe. Les deux adolescents ont donc l'interdiction absolue de s'approcher à moins de deux mètres. Malgré cette obligation, Will et Stella se rapprochent peu à peu et tombent amoureux. Ils doivent alors user de stratagèmes pour semer les infirmières et passer du temps ensemble.
Très vite, cette distance entre eux ne rime plus avec sécurité, mais avec punition.
Paediatric palliative care (PPC) is regarded as standard care for children and young people (CYP) with life-limiting conditions (LLCs). There is a lack of knowledge about the rate of CYP with LLCs, hampering the development of PPC. This retrospective study aimed to examine population-based statistics of South Korean CYP with LLCs and the pattern of healthcare use and costs in their last year of life, analysing the National Health Insurance Service claims database for the period 2013–2015. In 2015, the number of CYP (=24 years old) living with LLCs was 133,177, with those who died accounting for 1,032. Prevalence of LLC and mortality rate per 100,000 were highest among under-1-age group (2,151.7 and 82.7, respectively). In the last year of life, 91.8% of deceased CYP with LLCs were hospitalized at least once and the average length of stay was 101.2 days (standard deviation = 104.1). Deceased CYP with cancer spent more on healthcare than non-cancer CYP (64,266 vs. 40,694 US dollar, p < 0.001). The average relevance index for CYP death related to LLCs was 55.9%. Our results provide baseline information on healthcare utilization and expenditure among CYP with LLCs, which is crucial data for designing evidence-based PPC policy and services.
Cette manifestation consacrée aux enfants, adolescents et jeunes adultes orphelins est une opportunité de mettre la lumière sur leur situation sociale et leur vécu. Placé sous le signe de l’action, cet événement est l’occasion de prendre connaissance des résultats inédits des sept projets de recherche soutenus par la Fondation OCIRP, du partenariat initié avec l'Institut national d'études démographiques (INED) et de l'enquête « École et orphelins », programme interne du pôle Études et recherche de la fondation. Cet événement est enfin l’occasion d’ouvrir un espace de débat entre chercheurs-es et acteurs mobilisés et concernés : praticiens, professionnels de l’action sociale et de la santé, enseignants et personnels de l’éducation, chercheurs, acteurs associatifs, responsables politiques, journalistes, représentants d’institutions publiques et d’organismes privés, et en particulier parents, enfants, adolescents et jeunes adultes orphelins et leurs proches.
Context: Research shows an increased symptom burden in young adult (YA) cancer patients compared with their older adult counterpart.
Objectives: The purpose of this study was to identify differences in clinical characteristics and related outcomes between YA and older adult cancer patients admitted for cancer-related pain.
Materials and Methods: We retrospectively identified 190 hospitalized patients in a single academic center with admissions for cancer-related pain. Patients were grouped into either "young adult" (18-39) or "older adult (>40) cohorts. We compared differences in patient characteristics and pain regimens.
Results: Median oral morphine equivalent per 24 hours was higher in the YA group (194 mg vs. 70 mg, p = 0.010). Younger patients received patient-controlled analgesia (PCA) more frequently (p = 0.023). The number of palliative care consults and adjuvants prescribed did not differ between groups (p > 0.05), althoughYAs more frequently had an inpatient pain anesthesia consult (p = 0.047).
Conclusion: Findings show increased opioid requirements and PCA use in YAs being treated for malignancy compared with their older adult counterpart.
PURPOSE: Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience.
METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling.
RESULTS: There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity.
CONCLUSION: Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.
Background: To the authors' knowledge, end-of-life (EOL) care outcomes among adolescents and young adults (AYAs) with cancer who are living in poverty remain poorly understood. The primary aim of the current study was to examine the effect of poverty on EOL care for AYA patients with cancer.
Methods: The authors conducted a multisite, retrospective study of AYA patients with cancer aged 15 to 39 years who died between January 2013 and December 2016 at 3 academic sites. Medical record-based EOL care outcomes included hospice referral, palliative care (PC) consultation, cancer treatment within the last month of life, and location of death. Two measures of poverty were applied: 1) zip code with a median income =200% of the federal poverty level; and 2) public insurance or lack of insurance. Logistic regression analyses were conducted.
Results: A total of 252 AYA cancer decedents were identified. Approximately 41% lived in a high-poverty zip code and 48% had public insurance or lacked insurance; approximately 70% had at least 1 poverty indicator. Nearly 40% had a hospice referral, 60% had a PC consultation (76% on an inpatient basis), 38% received EOL cancer treatment, and 39% died in the hospital. In bivariable analyses, AYA patients living in low-income zip codes were found to be less likely to enroll in hospice (P = .01), have an early PC referral (P = .01), or receive EOL cancer treatment (P = .03), although only EOL cancer treatment met statistical significance in multivariable models. No differences with regard to location of death (P = .99) were observed.
Conclusions: AYA patients with cancer experience low rates of hospice referral and high rates of in-hospital death regardless of socioeconomic status. Future studies should evaluate early inpatient PC referrals as a possible method for improving EOL care.
Background: The “Promoting Resilience in Stress Management” intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Aim: Utilizing data from a randomized clinical trial of Promoting Resilience in Stress Management versus Usual Care, we examined whether response to Promoting Resilience in Stress Management differed across key sociodemographic characteristics.
Design: Adolescents and young adults with cancer completed patient-reported outcome measures of resilience, hope, benefit-finding, quality of life, and distress at enrollment and 6 months. Participants were stratified by sex, age, race, and neighborhood socioeconomic disadvantage based on home address (Area Deprivation Index scores with 8–10 = most disadvantaged). Differences in the magnitude of effect sizes between stratification subgroups were noted using a conservative cutoff of d > 0.5.
Setting/participants: participants were 12 to 25 years old, English-speaking, and receiving cancer care at Seattle Children’s Hospital.
Results: In total, 92 adolescents and young adults (48 Promoting Resilience in Stress Management, 44 Usual Care) completed baseline measures. They were 43% female, 73% 12 to 17 years old, 64% White, and 24% most disadvantaged. Effect sizes stratified by sex, age, and race were in an expected positive direction and of similar magnitude for the majority of outcomes with some exceptions in magnitude of treatment effect. Those who lived in less disadvantaged neighborhoods benefited more from Promoting Resilience in Stress Management, and those living in most disadvantaged neighborhoods benefited less.
Conclusion: The “Promoting Resilience in Stress Management” intervention demonstrated a positive effect for the majority of outcomes regardless of sex, age, and race. It may not be as helpful for adolescents and young adults living in disadvantaged neighborhoods. Future studies must confirm its generalizability and integrate opportunities for improvement by targeting individual needs.
BACKGROUND: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature.
AIM: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care.
DESIGN: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices® Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention.
SETTINGS/PARTICIPANTS: A total of 10 adolescent and young adult patients (aged 14–27 years) undergoing bone marrow transplant at an academic Midwest children’s hospital were involved in the study.
CONCLUSION: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.
A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences.
AIM: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making.
DESIGN: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018.
SETTING/PARTICIPANTS: Twelve adolescent and young adult patients listed for heart transplant (ages = 12-19 years) and one parent for each were enrolled at a single-center, US children's hospital.
RESULTS: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied.
CONCLUSIONS: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.