Table 6.
Evidence from descriptive studies.
| Author, Year, Country * | Aim (A), Design (D) | Population (Age in Years), n | Outcomes | Quality Appraisal |
|---|---|---|---|---|
| Baker, 2008, USA [58] | A: To assess clinical gaps in pediatric cancer care and to enhance this by integrating these aspects in the tool D: Narrative review study |
Children with cancer (NS) and their parents, n = NA | The development of the Individualized Care Coordination Plan | NA |
| Christenson, 2010, USA [51] | A: To present communication gaps in palliative care of adolescents and to improve this by using the CCCT (Comfort Care Communication Tool) D: Case report study |
Woman with CF (18), n = 1 | One case study | NA |
| Curtin, 2017, USA [52] | A: To assess FACE-TC (FAmily-CEntered pediatric Advance Care Planning-Rare) efficacy on family congruence, quality of life and early ACP document completion D: Study protocol of a dyadic, longitudinal RCT |
AYAs (14–20) with cancer and their family decision maker), dyads n = 130 | Design of dyadic, longitudinal RCT | NA |
| Dallas, 2012, USA [53] | A: To assess long-term FACE (FAmily/Adolescent-CEntered Advance Care Planning) efficacy on EOL care and tries to enhance physical, psychological, spiritual well-being D: Study protocol of a dyadic, longitudinal RCT |
Adolescents with HIV (14–21) and their family decision makers (>21), n = 130 | Design of dyadic, longitudinal RCT | NA |
| Fraser, 2010, UK [54] | A: To present the importance of sensitive pediatric EOL planning and to describe the history and format of the Wishes document D: Narrative review study |
NA (NS) | The importance of EOL planning The development of the Wishes document |
NA |
| Gallagher, 2018, UK [55] | A: To highlight the importance of knowledge and skills required to engage with children with learning disabilities in their EOL planning D: Narrative review study |
NA (NS) | The importance of and challenges in EOL planning ADVANCE toolkit content |
NA |
| Snaman, 2019, USA [59] | A: To identify high-priority factors in cancer treatment decisions and incorporating this in a new tool D: Descriptive study of tool development |
AYAs with newly diagnosed high-risk cancers (NS), their parents, and HCPs, dyads n = 5 and HCP n = 2 |
Development of MyPref | NA |
| Toce, 2003, USA [60] | A: To develop a tool that improves the pediatric quality at the EOL D: Descriptive study of tool development |
Children with life-threatening conditions (6–>12 months), children n = 83 and continuity providers n = 105 | Development of Footprints | NA |
| Van Breemen, 2020, Canada [57] | A: To describe the steps in the SICG-peds (Serious illness conversations in pediatrics) using one case as an exampleD: Case report study | Child diagnosed with osteosarcoma (11), n = 1 |
Content of the SICG-Peds | NA |
| Zadeh, 2015, USA [56] | A: To provide guidelines in the use of Voicing My Choices for health-care providers D: Ethical guide for health-care providers for Voicing My Choices |
AYAs living with cancer or pediatric HIV (NS), n = NA | Guidelines in the use of Voicing My Choices | NA |
ACP: advance care planning; AYAs: adolescents and young adults; CF: cystic fibrosis; EOL: end of life; HCP: health care provider; HIV: human immunodeficiency virus; NS: not specified; NA: not applicable; RCT: randomized controlled trial; * Country where study was conducted.