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. 2022 Jun 3;9(6):830. doi: 10.3390/children9060830

Table 3.

Evidence from observational studies.

Author, Year, Country * Aim (A), Design (D) Population (Age in Years), n Outcomes Risk of Bias Total Score (6)
Friebert, 2020, USA [42] A: To assess adolescents’ EOL needs and family congruence
D: Survey study from intervention arm FACE-TC (FAmily/Adolescent-CEntered Advance Care Planning for Teens with Cancer) (session 1) RCT		 Adolescents with cancer (14–21) and their legal or chosen guardian, dyads n = 80 FACE-TC

  1. Adolescent’s EOL values and needs

  2. Family congruence

 6
Hays, 2006, USA [37] A: To assess the effects of DMT (Decision-Making Tool) on family satisfaction and QOL
non-experimental pre-test and post-test D: Nonexperimental pre-test, post-test comparison study		 Children and adolescents with potentially life-limiting illness (0–22) and their parents, dyads n = 41 DMT:

  1. Effects on quality of life on four domains (physical, emotional, social, and school functioning)

  2. Family satisfaction

 4
Hendricks, 2017, USA [38] A: To evaluate COMPLETE (Communication Plan: Early through End of Life intervention) on the parent and provider levels and to describe the given parental responses.
D: Prospective, longitudinal, single-group pilot study		 Parents of children (0–18) with a brain tumor and a poor prognosis, mostly mothers; parents n = 13 and
children n = 11		 COMPLETE:

  1. Parents: emotional well-being (needs, hopes, decision regret, resources, distress, and uncertainty), satisfaction with provider communication and symptom management, and perception of information provided

  2. Provider: satisfaction and communication competence

 5
Jacobs, 2015, USA [39] A: To examine EOL family congruence
D: Survey study from intervention arm RCT provider post-hoc survey		 Adolescents with cancer (14–21) and their legal or chosen guardian, dyads n = 17 and clinicians n = 30 FACE-TC:

  1. Adolescent’s EOL preferences

  2. Family congruence

  3. Provider survey on three sections: career, FACE-TC interactions, and EOL care experiences

 5
Kazmerski, 2016, USA [40] A: To assess patient and provider attitudes and preferences towards VMC (Voicing My Choices)
D: Pre–post-test training survey quality improvement study		 Patients with advanced CF (≤22); patients n = 12, providers (pre-training) n = 6, and providers (post-training) n = 7 Patient and provider (pre- and post-training):

  1. ACP: positive and negative associations, preferences in CF care

  2. VMC: thoughts on VMC and age appropriateness

 2
Moody, 2020, USA [41] A: To assess effects of COMPLETE on EOL outcomes
D: Two-phase,
single-arm, two-center prospective pre–post-intervention pilot study		 Phase I: Parents of children with newly diagnosed cancer
(1–<18 months), parents n = 21 and children n = 18 Phase II: Parents of children with any prognosis, parents n = 20 and children n = 17		 COMPLETE:

  1. Parent and child: time of hospice enrollment, pain, EOL interventions, and location of death

  2. Parent: negative emotions

 4

ACP: advance care planning; CF: cystic fibrosis; EOL: end of life; QOL: quality of life; RCT: randomized controlled trial; * Country where study was conducted.