A Longitudinal, Randomized, Controlled Trial of Advance Care Planning for Teens With Cancer: Anxiety, Depression, Quality of Life, Advance Directives, Spirituality

Lyon, Maureen E.; Jacobs, Shana; Briggs, Linda; Cheng, Yao I.; Wang, Jichuan

doi:10.1016/j.jadohealth.2013.10.206

Cited by 125 publications

(203 citation statements)

References 28 publications

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“…PQ-MSAS scores were significantly higher for surveys completed close to disease progression (1 to 10 days) compared with those completed more than 120 days after last progression date. Finally, all three PQ-MSAS scores reported for children receiving moderate or high-intensity therapy were significantly higher thanthosereportedforchildrenreceivingnotherapy;high-intensitytreatments were associated with substantial increases for total and physical scores (12.09 [95% CI, 7.54 to 16.64] and 20.54 [95% CI, 14.78 to 26.30] respectively).…”

Section: Factors Associated With Higher Symptom Scoresmentioning

confidence: 92%

“…The pattern of associations was similar to those described for the full cohort, although most results did not reach statistical significance. Meaningful results included higher reported total and physical PQ-MSAS scores in girls compared with boys (10.00 [95% CI, 3.77 to 16.24] and 13.23 [95% CI, 5.64 to 20.82] points higher, respectively). Disease progression in the prior 10 days was associated with higher PQ-MSAS physical scores compared with progression more than 60 days before (11.82; 95% CI, 0.46 to 23.18).…”

Section: Subgroup Of Children With End-of-life Pq-surveysmentioning

confidence: 99%

“…17 When the PediQUEST study was initiated, the MSAS was the only multidimensional and multiple symptom instrument that had been adapted and validated for use in children. There are two validated child versions: MSAS [10][11][12][13][14][15][16][17][18] 18 and MSAS 7-12.…”

Section: Authors' Disclosures Of Potential Conflicts Of Interestmentioning

confidence: 99%

“…14- 16 Two studies focused on describing the child's experience, one restricted analyses to psychological outcomes, and the other included a relatively small cohort of children. No PRO studies assessed determinants of…”

Section: Introductionmentioning

confidence: 99%

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Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study

Wolfe

Orellana

Ullrich

et al. 2015

JCO

247

298

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Purpose Thousands of children are living with advanced cancer; yet patient-reported outcomes (PROs) have rarely been used to describe their experiences. We aimed to describe symptom distress in 104 children age 2 years or older with advanced cancer enrolled onto the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study (multisite clinical trial evaluating an electronic PRO system). Methods Symptom data were collected using age- and respondent-adapted versions of the PediQUEST Memorial Symptom Assessment Scale (PQ-MSAS) at most once per week. Clinical and treatment data were obtained from medical records. Individual symptom scores were dichotomized into high/low distress. Determinants of PQ-MSAS scores were explored using linear mixed-effects models. Results During 9 months of follow-up, PQ-MSAS was administered 920 times: 459 times in teens (99% self-report), 249 times in children ages 7 to 12 years (96% child/parent report), and 212 times in those ages 2 to 6 years (parent reports). Common symptoms included pain (48%), fatigue (46%), drowsiness (39%), and irritability (37%); most scores indicated high distress. Among the 73 PQ-MSAS surveys administered in the last 12 weeks of life, pain was highly prevalent (62%; 58% with high distress). Being female, having a brain tumor, experiencing recent disease progression, and receiving moderate- or high-intensity cancer-directed therapy in the prior 10 days were associated with worse PQ-MSAS scores. In the final 12 weeks of life, receiving mild cancer-directed therapy was associated with improved psychological PQ-MSAS scores. Conclusion Children with advanced cancer experience high symptom distress. Strategies to promote intensive symptom management are indicated, especially with disease progression or administration of intensive treatments.

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Section: Factors Associated With Higher Symptom Scoresmentioning

confidence: 92%

Section: Subgroup Of Children With End-of-life Pq-surveysmentioning

confidence: 99%

Section: Authors' Disclosures Of Potential Conflicts Of Interestmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study

Wolfe

Orellana

Ullrich

et al. 2015

JCO

247

298

View full text Add to dashboard Cite

show abstract

“…espite recommendations that end-of-life (EOL) discussions occur early in young adult patients with lifelimiting illnesses [1][2][3][4][5] and data indicating that advance care planning in adolescent and young adult (AYA) patients improves patent-surrogate congruence and understanding in EOL decisions, [6][7][8] significant barriers exist to the routine incorporation of goals of care discussions for this population. [9][10][11][12][13] Lack of such discussions can lead to undesired medical care, conflict between the medical team and families, and delay in the palliative care modalities aimed at reducing suffering.…”

mentioning

confidence: 99%

The Impact of Advance Directives on End-of-Life Care for Adolescents and Young Adults Undergoing Hematopoietic Stem Cell Transplant

Needle

Smith

2016

Journal of Palliative Medicine

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Background: Little is known about the role of advance directives (AD) in end-of-life (EOL) care for adolescents and young adults (AYA) undergoing hematopoietic stem cell transplant (HSCT). Objective: The study objective was to describe the frequency, type, and influence of AD on the use of lifesustaining treatment (LST) in AYA patients undergoing HSCT. Methods: We performed a retrospective chart review of 96 patients aged 14-26 undergoing HSCT between April 2011 and January 2015 at the University of Minnesota. LST was defined as the use of positive pressure ventilation (PPV), dialysis, or CPR. Results: Of the 96 patients, survival was 72.9%, and 23% had an AD. Of the 26 patients who died, 13 (50%) had an AD. Among the 19 patients who died in the ICU, there was no significant difference in PPV, dialysis, withholding or withdrawing of LST, or timing of do not resuscitate (DNR) orders between those with ADs preferring LST (n = 5), those naming proxies only (n = 4), and those without ADs (n = 10). Patients with ADs expressing preference for LST were significantly more likely to receive CPR than those with proxies or those without ADs ( p = 0.02). Conclusion: A minority of AYA patients undergoing HSCT had ADs. Patients received care that was strongly associated with their preferences. With the exception of CPR, the use of LST did not differ between those with ADs and those without.

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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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A Longitudinal, Randomized, Controlled Trial of Advance Care Planning for Teens With Cancer: Anxiety, Depression, Quality of Life, Advance Directives, Spirituality

Cited by 125 publications

References 28 publications

Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study

Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study

The Impact of Advance Directives on End-of-Life Care for Adolescents and Young Adults Undergoing Hematopoietic Stem Cell Transplant

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

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