Table 4.
Author, Year, Country * | Aim (A), Design (D) | Population (Age in Years), n | Outcome Parameters | Risk of Bias Total Score (6) | Quality of Reporting Total Score (32) | |
---|---|---|---|---|---|---|
Quantitative | Qualitative | |||||
Kline, 2012, USA [46] | A: To assess family satisfaction and preferences with their palliative care program and its DMT tool (Decision-Making Tool) D: Supportive care survey and open-ended questions interview study |
Guardians of high-risk hemato-oncology pediatric patients (mean of 9.7), n = 20 (quantitative outcomes) and n = 6 (qualitative outcomes) |
|
Open-ended questions on the palliative care program and DMT; questions NS | 4 | 6 |
Lyon, 2019, USA [47] | A: To assess the feasibility and acceptability of FACE-Rare (FAmily-CEntered pediatric Advance Care Planning-Rare) D: Pre–post-test questionnaire study |
Pediatric patients with rare diseases (≥1–≤21) and their legal guardians or family caregivers (all mothers), dyads n = 6 |
FACE-Rare
|
Questions NS | 5 | 8.5 |
Noyes, 2013, UK [50] | A: To evaluate ‘My Choices’ and enhance future care planning D: Pre–post-test questionnaire (quantitative) and semi-structured interview (qualitative) study |
Children and young people (0–≥16) with complex health and palliative care needs, as well as their parents and health-care providers, children n = 11 parents n = 12, bereaved parents n = 3, professionals n = 13 (qualitative outcomes), professionals (pre-study) n = 27, and professionals (post-study) n = 20 (quantitative outcomes) |
Professionals evaluating My Choices on preferred:
|
Views of parents, children, and professionals on the My Choices booklets; questions/themes NS | 2 | 12 |
Wiener, 2008, USA [49] | A: To assess the acceptability of Five Wishes, helpfulness, and defining important EOL concerns D: Descriptive study data and closed- and open-response interviews |
Adolescents and young adults with HIV-1 or metastatic/recurrent cancer (16–28), n = 20 | Five Wishes:
|
Adjustments to the Five Wishes document | 4 | 11 |
Wiener, 2012, USA [48] | A: To assess and compare the usefulness, helpfulness, and stressfulness of the MTMWMV (My Thoughts, My Wishes, My Voice) with the Five Wishes D: Descriptive study data and closed- and open-response interviews |
AYAs with metastatic or recurrent cancer or HIV infection (16–28), n = 52 |
Evaluating both tools regarding:
|
Adjustments to the MTMWMV document | 4 | 4.5 |
AYAs: adolescents and young adults; EOL: end of life, HIV: human immunodeficiency virus; NS: not specified; * Country where study was conducted.