Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review
Abstract
:1. Introduction
2. Materials and Methods
2.1. Data Sources and Searches
2.2. Study Selection
2.3. Data Extraction and Quality Assessment
2.4. Data Synthesis and Analysis
3. Results
3.1. Risk of Bias and Quality of Reporting
3.2. Intervention Characteristics
3.3. Attention to Age Appropriateness
3.4. Factors Influencing Age Appropriateness
4. Discussion
4.1. Defining Age Appropriateness in pACP
4.2. Recommendations for Future Research
4.3. Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
Dallas, 2016 [31] | Lyon, 2009 [32] | Lyon, 2009 [33] | Lyon, 2010 [34] | Lyon, 2013 [35] | Lyon, 2014 [36] | |
---|---|---|---|---|---|---|
| + | + | + | + | ? | + |
| + | + | + | + | + | + |
| - | - | - | - | - | - |
| + | - | ? | ? | - | ? |
| + | + | ? | + | + | + |
| + | - | + | + | + | + |
| 5 | 3 | 3 | 4 | 3 | 4 |
Hays, 2006 [37] | Hendricks, 2017 [38] | Jacobs, 2015 [39] | Kazmerski, 2016 [40] | Kline, 2012 (MM) [46] | Lyon, 2019 (MM) [47] | Moody, 2020 [41] | Wiener, 2008 (MM) [49] | Wiener, 2012 (MM) [48] | Friebert, 2020 [42] | Noyes, 2013 (MM) [50] | |
---|---|---|---|---|---|---|---|---|---|---|---|
1. Selection process of study population | + | + | + | + | + | + | + | + | + | + | - |
2. Comparability of compared groups | NA | NA | NA | NA | NA | NA | NA | NA | NA | NA | NA |
3. Standardized protocol for the use of the ACP tool | - | + | + | + | - | + | + | + | + | + | + |
4. Standardized protocol for measuring the outcome | + | + | + | - | + | + | + | + | + | + | + |
5. Missing data with regard to inclusion of follow-up or incomplete data | + | + | + | - | - | + | - | - | - | + | - |
6. Adjustment for confounders | - | - | NA | NA | + | - | - | NA | NA | + | NA |
7. Selective outcome reporting | + | + | + | - | + | + | + | + | + | + | - |
Total score (out of 7) | 4 | 5 | 5 | 2 | 4 | 5 | 4 | 4 | 4 | 6 | 2 |
Fahner, 2020 [11] | Feraco, 2018 [43] | Finlay, 2008[45] | Hartley, 2016[44] | Noyes, 2013 (MM) [50] | Kline, 2012 (MM) [46] | Lyon, 2019 (MM) [47] | Wiener, 2012 (MM) [48] | Wiener, 2008 (MM) [49] | |
---|---|---|---|---|---|---|---|---|---|
| +/- | + | - | +/- | - | +/- | - | - | + |
| - | + | - | - | - | - | - | + | + |
| - | - | - | - | - | - | - | - | - |
| - | + | - | - | - | - | - | - | - |
| - | - | - | - | - | - | +/- | - | + |
| - | - | - | - | - | - | - | - | - |
| - | - | - | - | - | - | - | - | - |
| - | - | - | - | - | - | - | - | - |
| + | + | + | + | + | + | + | - | + |
| - | + | - | + | + | - | - | - | - |
| - | + | - | - | + | - | - | - | - |
| + | + | + | + | + | + | + | + | + |
| - | +/- | - | - | + | +/- | +/- | - | + |
| - | +/- | - | - | +/- | - | - | - | - |
| - | - | - | - | - | - | + | - | - |
| + | + | +/- | - | +/- | + | + | + | + |
| - | + | - | + | +/- | - | + | - | + |
| - | - | - | - | - | - | - | - | + |
| + | + | - | + | + | + | + | - | - |
| - | - | - | - | + | - | - | - | - |
| - | + | - | - | - | - | + | - | + |
| - | - | - | + | - | - | - | - | - |
| - | - | - | - | - | - | - | - | - |
| - | + | - | - | - | - | - | - | - |
| - | - | - | - | - | - | - | - | - |
| - | + | - | + | - | - | - | - | - |
| - | + | - | - | + | - | - | - | - |
| - | - | + | - | - | - | - | - | - |
| + | + | - | + | +/- | +/- | +/- | +/- | - |
| + | + | +/- | + | + | + | - | + | + |
| + | + | - | + | + | - | - | - | - |
| + | - | - | - | - | - | - | - | - |
Total + | 8.5 | 18 | 4 | 10.5 | 12 | 6 | 8.5 | 4.5 | 11 |
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(critical illness[MeSH Terms] OR critical illness*[tiab] OR "critically ill"[tiab] OR life limiting condition*[tiab] OR life-limiting disease*[tiab] OR life threatening illness*[tiab] OR life limiting illness*[tiab] OR life threatening condition*[tiab] OR serious illness*[tiab] OR palliative care[MeSH] OR terminal care[MeSH] OR "palliative care"[tiab] OR "palliative medicine"[tiab] OR "palliative nursing"[tiab] OR "palliative period"[tiab] OR "palliative phase"[tiab] OR "palliative therapy"[tiab] OR palliative treatment*[tiab] OR "palliative supportive care"[tiab] OR "terminal care"[tiab] OR "terminal medicine"[tiab] OR "terminal period"[tiab] OR "terminal phase"[tiab] OR EOL[tiab] OR end of life*[tiab]) |
And |
("advance care planning"[MeSH] OR "advance directives"[MeSH] OR "decision making"[MeSH] OR "living wills"[MeSH] OR "patient participation"[MeSH] OR advance care plan*[tiab] OR ACP[tiab] OR pACP[tiab] OR advance decision*[tiab] OR advance directive*[tiab] OR advance medical directive*[tiab] OR advance healthcare planning*[tiab] OR advance medical planning*[tiab] OR advance statement*[tiab] OR "do not hospitalize"[tiab] OR "do not hospitalise"[tiab] OR "do not resuscitate"[tiab] OR "do not attempt cardiopulmonary resuscitation"[tiab] OR "DNR order"[tiab] OR DNACPR[tiab] OR "planning ahead"[tiab] OR "refusal of treatment"[tiab] OR treatment limitation*[tiab] OR conversation guide*[tiab] OR guide*[tiab] OR program*[tiab] OR procedure*[tiab] OR practice*[tiab] OR treatment limiting*[tiab] OR shared decision*[tiab] OR "patient participation"[tiab] OR "patient involvement"[tiab] OR "child centered care"[tiab] OR "person centered care"[tiab] OR "patient centered care"[tiab]) |
And |
(Infan*[tiab] OR toddler*[tiab] OR minor[tiab] OR minors*[tiab] OR boy[tiab] OR boys[tiab] OR boyfriend[tiab] OR boyfriends[tiab] OR boyhood[tiab] OR girl[tiab] OR girls[tiab] OR girlfriend[tiab] OR girlfriends[tiab] OR kid[tiab] OR kids[tiab] OR child[tiab] OR children*[tiab] OR schoolchild*[tiab] OR school child*[tiab] OR adolescen*[tiab] OR juvenil*[tiab] OR youth*[tiab] OR teen*[tiab] OR underage*[tiab] OR pubescen*[tiab] OR puberty[tiab] OR pediatrics[MESH] OR pediatric[tiab] OR pediatrics[tiab] OR paediatric[tiab] OR paediatrics[tiab] OR school[tiab] OR school*[tiab] OR prematur*[tiab] OR preterm*[tiab] OR youth[tiab] OR youths[tiab] OR teen[tiab] OR teens[tiab] OR teenager[tiab] OR youngster*[tiab] OR child[MeSH] OR neonat*[tiab] OR baby[tiab] OR babies[tiab] OR toddler*[tiab] OR newborn*[tiab] OR postneonat*[tiab] OR postnat*[tiab] OR perinat*[tiab] OR preschool*[tiab] OR suckling*[tiab] OR picu[tiab] OR nicu[tiab] OR neo-nat*[tiab] OR neonat*[tiab] OR premature*[tiab] OR postmature*[tiab] OR pre-mature*[tiab] OR post-mature*[tiab] OR preterm*[tiab] OR pre-term*[tiab] OR playgroup*[tiab] OR play-group*[tiab] OR playschool*[tiab] OR prepube*[tiab] OR preadolescen*[tiab] OR junior high*[tiab] OR highschool*[tiab] OR senior high[tiab] OR young people*[tiab]) |
Author, Year, Country * | Aim | Population (Age in Years), n | Outcome Parameters | Risk of Bias Total Score (6) |
---|---|---|---|---|
Dallas, 2016, USA [31] | FACE (FAmily/Adolescent-CEntered Advance Care Planning) vs. Healthy Living Control Condition | Adolescents with HIV (14–21) and their family decision maker, dyads n = 97 (I: 48, C: 49) | FACE:
| 5 |
Lyon, 2009, USA [32] | FACE vs. Healthy Living Control Condition | Adolescents with HIV/AIDS (14–21) and surrogate, dyads n = 38 (I: 20, C: 18) | FACE:
| 3 |
Lyon, 2009, USA [33] | FACE vs. Healthy Living Control Condition | Adolescents with HIV/AIDS (14–21) and surrogate, dyads n = 38 (I: 18, C: 17) | FACE:
| 3 |
Lyon, 2010, USA [34] | FACE vs. Healthy Living Control Condition | Adolescents with HIV (14–21) and legal guardian, dyads n = 38 (I: 18, C: 17) | FACE:
| 4 |
Lyon, 2013, USA [35] | FACE vs. Treatment as Usual | Adolescent with cancer (14–21) and their Surrogate, dyads n = 30 (I: 17, C: 13) | FACE:
| 3 |
Lyon, 2014, USA [36] | FACE vs. Treatment as Usual | Adolescent with cancer (14–21) and their surrogate, dyads n = 30 (I: 17, C: 13) | FACE-TC (Family/Adolescent-Centered Advance Care Planning for Teens with Cancer):
| 4 |
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
| 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:
| 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:
| 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:
| 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):
| 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:
| 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 |
Author, Year, Country * | Aim (A), Design (D) | Population (Age in Years), n | Outcomes | Quality of Reporting Total Score |
---|---|---|---|---|
Fahner, 2020, the Netherlands [11] | A: To evaluate the acceptability of content of IMPACT (Implementing Pediatric Advance Care Planning Toolkit) D: Qualitative pilot study | Children with life-limiting diseases (0–<18), children n = 27, parents n = 41, physicians n = 11, and nurses n = 7 |
| 8.5 |
Feraco, 2018, USA [43] | A: To address and ameliorate existing communication gaps in cancer care and to incorporate resulting knowledge in the development of the D100 (the Day 100 talk) D: Qualitative semi-structured interview study | Children, adolescents, and young adults undergoing cancer treatment for from 1 to <7 months (≥13), as well as their parents and oncology providers, adolescents n = 5, parents n = 6, and providers n = 11 | Perceived communication gaps in cancer care | 18 |
Finlay, 2008, UK [45] | A: To enhance family engagement in EOL planning through incorporating the results in their 3 × 3 framework D: Documentary analysis study | Children with non-malignant life-limiting illnesses (2–16 months), n = 8 | Content of EOL plans | 4 |
Hartley, 2016, UK [44] | A: To evaluate the assessment of family needs and concerns by the HNA tool (Holistic Needs Assessment) D: Qualitative analysis study and qualitative pilot study | Care managers employed by Anglia’s Children’s Hospices, n = 7 |
| 10.5 |
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 |
Intervention (Country) | Intervention Characteristics | Publications Included | |||
---|---|---|---|---|---|
Materials (Ma), Mode (Mo) and Setting (Se) | Aim | Interventionist | Target Population | ||
1. Comfort Care Communication Tool (USA) | Ma: Four-quadrant design document Mo: Face-to-face longitudinal conversations Se: NS | To enhance adolescents’ disclosure and person-centered care based on families’ goals | Pediatric Advanced Comfort Care Team Nurse | Adolescents with life-threatening or life-limiting health care conditions | Christenson, 2010 [51] |
2. Family-Centered pediatric Advance Care Planning (USA) | Ma: Family-centered ACP survey (session 1), Respecting Choices interview (session 2), and Five Wishes document (session 3) Mo: Three-session face-to-face conversation Se: Outpatient clinic | To facilitate EOL discussions for adolescents and their families | Certified facilitator | Adolescents with cancer, HIV or AIDS and their surrogates | Curtin, 2017 [52] Dallas, 2012 [53] Dallas, 2016 [31] Friebert, 2020 [42] Jacobs, 2015 [39] Lyon, 2009 [32] Lyon, 2009 [33] Lyon, 2010 [34] Lyon, 2013 [35] Lyon, 2014 [36] |
3. Family-Centered pediatric Advance Care Planning Rare (USA) | Ma: Conversation card, documentation tool Mo: Four-session interviews, face-to-face or via telemedicine conversation Se: NS | To identify and meet caregiver-centered palliative care needs | Certified clinician | Family caregivers of children and adolescents with rare diseases | Lyon, 2019 [47] |
4. Implementing Advance Care Planning Toolkit (NL) | Ma: Information leaflets, preparation cards (child and parent), and conversation guides Mo: Face-to-face conversations, on-off conversation, or multiple conversations Se: Home, inpatient, or outpatient clinic | To prepare children, clinicians and parents for future care, to guide documentation, and to elicit the voice of the child and stimulate a patient-centered approach | Clinician involved in the patient’s care | Children with life-limiting conditions and their families | Fahner, 2020 [11] |
5. DAY 100 Talk (UK) | Ma: Family preparatory and summary worksheet and a conversation guide Mo: Fill in up-front and face-to-face longitudinal conversations Se: Outpatient clinic | To enhance families’ disclosure and interdisciplinary guidance | Trained pediatric oncologist and psychosocial clinician | Children, adolescents, and young adults with cancer and their families | Feraco, 2018 [43] |
6. 3 × 3 Lifetime Framework (UK) | Ma: 3 × 3 Framework Document Mo: Face-to-face longitudinal conversations Se: NS | To enhance family engagement in EOL planning | Clinicians | Children with non-malignant, life-limiting illnesses and their families | Finlay, 2008 [45] |
7. The Wishes Document (UK) | Ma: Hand-held document Mo: Face-to-face longitudinal conversations Se: NS | To enhance family engagement in EOL planning | Clinician involved in the patient’s care | Children, young people with life-limiting conditions and their families | Fraser, 2010 [54] |
8. The ADVANCE toolkit (UK) | Ma: Ethical guide Mo: Face-to-face longitudinal conversations Se: Private place | To enhance provider guidance, families’ disclosure, and families’ engagement in EOL planning | Clinician involved in the patient’s care | Young persons with learning disabilities (who are approaching the end of life) and their families | Gallagher, 2018 [55] |
9. Holistic Needs Assessment (UK) | Ma: Comprehensive assessment of needs Mo: Face-to-face conversation Se: NS | To enhance person-centered care based on family needs | Senior member of staff | Children in palliative care settings and their family | Hartley, 2016 [44] |
10. Decision-making Communication Tool (USA) | Ma: Four domains of decision making Mo: Face-to-face longitudinal conversations Se: Outpatient clinic | To enhance patient–provider communication, decision making, and quality of life, as well as to identify goals of care | Supportive care team clinicians | Pediatric palliative care: infants, children, and adolescents with potentially life-limiting illnesses (oncology) and their families | Kline, 2012 [46] Hays, 2006 [37] |
11.Communication Plan: Early through End of Life (USA) | Ma: Conversation guide and visual aids Mo: Three face-to-face conversation sessions, longitudinal revision Se: During clinic appointments | To reduce parental distress | Trained oncology providers | Parents of children with cancer | Hendricks, 2017 [38] Moody, 2020 [41] |
12. Voicing my choices (USA) | Ma: Guide adapted from the Five Wishes, completion of the document guide Mo: Longitudinal revision Se: NS | To enhance communication between the patient and caregiver in EOL preferences and care | Clinicians | Adolescents and young people living with a serious illness | Wiener, 2012 [48] Kazmerski, 2016 [40] Zadeh, 2015 [56] |
13. My Choices/Choices for My Child Booklets (UK) | Ma: Booklets for children and parents, possibility Mo: To fill in/initiate thinking or face-to-face conversations Se: Home or outpatient clinic | To enhance family engagement in future planning and the disclosure of family preferences | NA | Children with life-limiting conditions from diagnosis onwards and their parents | Noyes, 2013 [50] |
14. The Serious Illness Conversation Guide-Peds (SICG-Peds) (Canada) | Ma: Conversation guide Mo: Longitudinal face-to-face or by phone conversations Se: Home or clinic | To enhance understanding of illness and care preferences | Trained pediatrician | Children with serious illness and their parents | Van Breemen, 2020 [57] |
15. Five Wishes® (USA) | Ma: Legal document consisting of five wishes Mo: Fill in document Se: NS | To enhance communication in EOL care | Clinicians | Adolescents and young adults living with serious illnesses | Wiener, 2008 [49] |
16.Individualized care planning and coordination (USA) | Ma: Advance care planning documentation tool Mo: Longitudinal revision on timely basis Se: NS | To facilitate integration of palliative care into ongoing care | Clinicians | Children with cancer and their parents | Baker, 2008 [58] |
17. MyPref (USA) | Ma: Preference report up-front cancer therapy Mo: Fill in document, longitudinal revision Se: NS | To clarify AYAs’ preferences and to enhance engagement in medical decision making | Oncology providers or other clinicians | AYA patients with relapsed/progressive cancer | Snaman, 2019 [59] |
18. FOOTPRINTS (USA) | Ma: Conversation guide, using a discharge order sheet Mo: Longitudinal face-to-face conversations Se: During the interdisciplinary “care conference” | To provide quality of care for the patient, their families, and providers through anticipating their needs on a continual basis | Hospital-based “continuity” pediatrician | Children with life-limiting illnesses and their families | Toce, 2003 [60] |
Article | Description Concept | Implementation in the Tool Described | Evaluation on Age Appropriateness Stated by Patient/Provider/Family | Recommendations | |||
---|---|---|---|---|---|---|---|
Statement of Concept Applied | Elements of Tool | Patient | Provider | Family | |||
Baker, 2008 [58] | Implicit | No | NS | NS | NS | NS | Yes |
Christenson, 2010 [51] | Implicit | Yes | Questions adjusted for age and maturity | NS | NS | NS | Yes |
Curtin, 2017 [52] | Implicit | Yes | NS | NS | NS | NS | No |
Dallas, 2012 [53] | Implicit | Yes | NS | NS | NS | NS | No |
Dallas, 2016 [31] | No Description | No | NS | NS | NS | NS | No |
Fahner, 2020 [11] | Explicit | Yes | Booklets and conversation guides, with language adapted to the children | NS | NS | NS | Yes |
Feraco, 2018 [43] | No Description | No | NS | NS | NS | NS | No |
Finlay, 2008 [45] | No Description | No | NS | NS | NS | NS | No |
Fraser, 2010 [54] | Implicit | No | NS | NS | NS | NS | Yes |
Friebert, 2020 [42] | Implicit | No | NS | NS | NS | NS | No |
Gallagher,2018 [55] | Implicit | No | NS | NS | NS | NS | Yes |
Hartley, 2016 [44] | Implicit | No | NS | NS | NS | NS | No |
Hays, 2006 [37] | Implicit | No | NS | NS | NS | NS | Yes |
Hendricks,2017 [38] | No Description | No | NS | NS | NS | NS | No |
Jacobs, 2015 [39] | No description | No | NS | NS | NS | NS | No |
Kazmerski, 2016 [40] | Implicit | No | NS | 90% considered VMC (Voicing My Choices) to be age-appropriate; 66% considered ACP to be appropriate to introduce before the age of 18 or at any age | 58% considered VMC to be appropriate for patient population/age group; 50% found the ideal patient age for ACP discussion was >18 years | NS | No |
Kline, 2012 [46] | No Description | No | NS | NS | NS | NS | No |
Lyon, 2009 [32] | Explicit | Yes | NS | NS | NS | NS | Yes |
Lyon, 2009 [33] | Explicit | Yes | NS | NS | NS | NS | No |
Lyon, 2010 [34] | No Description | No | NS | NS | NS | NS | No |
Lyon, 2013 [35] | Implicit | No | NS | NS | NS | NS | No |
Lyon, 2014 [36] | Implicit | Yes | NS | NS | NS | NS | No |
Lyon, 2019 [47] | No Description | No | NS | NS | NS | NS | No |
Moody, 2020 [41] | No Description | No | NS | NS | NS | NS | No |
Noyes, 2013 [50] | Implicit | Yes | Booklets content and images adapted for age | NS | NS | NS | Yes |
Snaman, 2019 [59] | Explicit | Yes | NS | NS | NS | NS | Yes |
Van Breemen, 2020 [57] | Implicit | Yes | Family-centered language | NS | NS | NS | No |
Wiener, 2008 [49] | Implicit | Yes | Age-appropriate images | 90% declared that all statements on EOL care were appropriate and helpful for someone their age | NS | NS | Yes |
Wiener, 2012 [48] | Implicit | Yes | Wording and questions adjusted for development and a glossary added | No significant tool differences in the degree of help or stress in age groups or differences in document content; AYAs disagreed on whether medical care wishes in the Five Wishes versus MTMWMV (My Thoughts, My Wishes, My Voice) was more appropriate for someone of their age | NS | NS | Yes |
Zadeh, 2015 [56] | Explicit | Yes | Wording and questions adjusted for development and a glossary added | NS | NS | NS | Yes |
Toce, 2003 [60] | Implicit | Yes | NS | NS | NS | NS | No |
Willingness to Participate | Ability to Participate | Developing Social Identity | Legal Responsibilities | |||
---|---|---|---|---|---|---|
Decision-Making Capacity | A Child’s Understanding of Their Own Medical Process | Cognitive Impairment | ||||
Baker, 2008 [58] | x | x | ||||
Christenson, 2010 [51] | x | x | x | x | ||
Curtin, 2017 [52] | x | |||||
Dallas, 2012 [53] | x | x | x | x | x | |
Dallas, 2016 [31] | x | x | x | |||
Fahner, 2020 [11] | x | x | ||||
Feraco, 2018 [43] | x | x | ||||
Finlay, 2008 [45] | ||||||
Fraser, 2010 [54] | x | |||||
Friebert, 2020 [42] | x | x | x | x | ||
Gallagher, 2018 [55] | x | x | x | |||
Hartley, 2016 [44] | x | |||||
Hay, 2006 [37] | ||||||
Hendricks, 2017 [38] | x | |||||
Jacobs, 2015 [39] | x | x | x | |||
Kazmerski, 2016 [40] | x | |||||
Kline, 2012 [46] | ||||||
Lyon, 2009 [32] | x | x | x | x | ||
Lyon, 2009 [33] | x | x | x | x | x | |
Lyon, 2010 [34] | x | x | x | |||
Lyon, 2013 [35] | x | x | x | x | ||
Lyon, 2014 [36] | x | x | x | x | ||
Lyon, 2019 [47] | ||||||
Moody, 2020 [41] | ||||||
Noyes, 2013 [50] | ||||||
Snaman, 2019 [59] | x | x | ||||
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Brunetta, J.; Fahner, J.; Legemaat, M.; van den Bergh, E.; Krommenhoek, K.; Prinsze, K.; Kars, M.; Michiels, E. Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review. Children 2022, 9, 830. https://doi.org/10.3390/children9060830
Brunetta J, Fahner J, Legemaat M, van den Bergh E, Krommenhoek K, Prinsze K, Kars M, Michiels E. Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review. Children. 2022; 9(6):830. https://doi.org/10.3390/children9060830
Chicago/Turabian StyleBrunetta, Julie, Jurrianne Fahner, Monique Legemaat, Esther van den Bergh, Koen Krommenhoek, Kyra Prinsze, Marijke Kars, and Erna Michiels. 2022. "Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review" Children 9, no. 6: 830. https://doi.org/10.3390/children9060830