Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT

Background Cancer diagnoses pose challenges to adolescents’ and young adults’ (AYA) physical, mental, and emotional health, and developmental tasks. In order for AYAs, caregivers, clinicians, and other collaborators to optimize health outcomes (coproduction of health), understanding what living well means for AYAs who have experienced cancer is necessary. The objective was to develop an empirical definition of “living well” for AYAs who have experienced cancer to broadly understand AYA values and priorities. This definition may ultimately guide future conversations between caregivers and AYAs, eliciting thorough, personal definitions of living well from individual AYAs. Such conversations may enhance AYA participation in coproducing their health. Procedure Qualitative analysis using a phenomenological approach of N = 30 structured Respecting Choices interviews conducted with AYAs (14‐21 years; mean 84.2 [SD 69] months postcancer diagnosis with 21% on active treatment) from four tertiary pediatric hospitals in the context of a primary study of a pediatric advance care planning intervention trial. Results AYAs who have experienced cancer conceptualized “living well” as maintaining physical, mental, and emotional health, as well as engaging in purposeful, age‐appropriate activities with people important to them. Living well had three components: living mindfully, living an identity as a healthy AYA, and spending time with friends and family. Conclusions Conversations with AYAs who have experienced cancer elicited rich, complex concepts of “living well.” Provider initiation of discussions about living well may facilitate personalized goals of care conversations. This study may serve as the basis to design and prototype future clinical interventions to enhance AYA engagement.

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“…Recruitment, consent/assent, and completion of baseline data questionnaires have been described in the published protocol. 21…”

Section: Methodsmentioning

confidence: 99%

“…Recruitment, consent/assent, and completion of baseline data questionnaires have been described in the published protocol 21 . Session 2 of the three‐session FAmily CEntered pediatric ACP intervention for teens with cancer (FACE‐TC) consisted of the Respecting Choices Advance Care Planning: Next Steps interview 19 .…”

Section: Methodsmentioning

confidence: 99%

“Living life as if I never had cancer”: A study of the meaning of living well in adolescents and young adults who have experienced cancer

Schreiner

Grossoehme

Friebert

et al. 2020

Pediatric Blood & Cancer

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“…Enrollment was from July 16, 2016 through April 30, 2019. Methods of this study and the protocol have been published elsewhere 8 . Eligibility criteria for adolescents were ≥14 and <21 years old at the time of enrollment, have a cancer diagnosis, English speaking, and without developmental delays.…”

Section: Methodsmentioning

confidence: 99%

“…Participants with cancer ages 18 years up to 21 years provided informed written consent. All participants under the age of 18 provided written informed assent with parent or guardian consent as well 8 . A Safety Monitoring Committee monitored the protocol yearly.…”

Section: Methodsmentioning

confidence: 99%

“…FAmily CEntered (FACE) pACP for teens with cancer (FACE-TC) facilitates conversations between family decision makers and adolescents with cancer about the adolescents' preferences for future medical decisions, regardless of current disease status, if adolescents cannot speak for themselves. 8 Analyzed here is a cross-sectional analysis of baseline spiritual well-being data from the ongoing FACE-TC trial.…”

Section: Introductionmentioning

confidence: 99%

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Shared spiritual beliefs between adolescents with cancer and their families

Livingston

Cheng²,

Wang

et al. 2020

Pediatric Blood & Cancer

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Background: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. Procedure: As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-beingversion 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4. Results: Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194. Abbreviations: FACE-TC pACP, FAmily CEntered pediatric advanced care planning for teens with cancer; FACIT-Sp-EX-4, functional assessment of chronic illness therapy-spiritual

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Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care

et al. 2020

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IMPORTANCELack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. OBJECTIVE To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. DESIGN, SETTING, AND PARTICIPANTS This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. EXPOSURE Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. MAIN OUTCOMES AND MEASURES The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted κ (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions).RESULTS A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). CONCLUSIONS AND RELEVANCEMany families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and (continued) Key Points Question Do families of adolescents with cancer know what the adolescent would want if they were dying? Findings In this cross-sectional study of 80 adolescent-family dyads (160 participants), critical congruence gaps were found between adolescents with cancer and thei...

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Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT

Cited by 22 publications

References 47 publications

“Living life as if I never had cancer”: A study of the meaning of living well in adolescents and young adults who have experienced cancer

“Living life as if I never had cancer”: A study of the meaning of living well in adolescents and young adults who have experienced cancer

Shared spiritual beliefs between adolescents with cancer and their families

Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care

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