Introduction
Advance care planning (ACP) helps to ensure that patients receive care that aligns with their goals, values, and preferences during serious or chronic illness (Sudore et al. Reference Sudore, Lum and You2017; Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019, Reference Van Rickstal, Vleminck and Engelborghs2022; van der Steen et al. Reference van der Steen, Nakanishi and Van den Block2024). ACP is most often used in the context of progressive, chronic diseases where important treatment decisions need to be made throughout the course of the illness. Dementia is one such progressive disease that currently has no curative treatment. As dementia progresses, patients may experience a loss of decision-making capacity and become increasingly reliant on family (van Engelen et al. Reference van Engelen, Gossink and de Vijlder2020; Van Rickstal et al. Reference Van Rickstal, Vleminck and Engelborghs2022). Therefore, involving family members throughout the ACP process is particularly important. ACP is increasingly used in older patients with dementia (Konno et al. Reference Konno, Inoue and Schultz2020; Anderson et al. Reference Anderson, Mihilli and Kumaresh2022). For example, Bosisio et al. demonstrated challenges in the implementation of ACP in practice in the early stage of dementia, such as the engagement of persons with dementia and the attitudes of healthcare professionals. Some healthcare professionals may be reluctant to initiate ACP due to uncertainty about decisional capacity (Bosisio et al. Reference Bosisio, Sterie and Rubli Truchard2021). However, little is known about ACP in patients with young-onset dementia (YOD), which begins before the age of 65 (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Engelborghs2023a; Vandaele et al. Reference Vandaele, van Eersel and Koopmans2025).
Existing research on ACP in YOD has mainly focused on communication and attitudes toward ACP (Baptista et al. Reference Baptista, Santos and Kimura2019; Tan et al. Reference Tan, Fox and Kruger2019; Van Rickstal et al. Reference Van Rickstal, Vleminck and Engelborghs2022). However, no studies have evaluated how the ACP process should be tailored to YOD (Vandaele et al. Reference Vandaele, van Eersel and Koopmans2025). Compared to older patients, patients with YOD have a longer life expectancy, fewer somatic comorbidities, and more neuropsychiatric symptoms, all of which can complicate ACP (Bakker et al. Reference Bakker, de Vugt and van Vliet2013; Dang et al. Reference Dang, Yong and Fong2024). In addition, as YOD occurs earlier in life, patients may face different challenges and therefore have distinct needs and preferences regarding ACP than older patients with dementia. The topics addressed in ACP in YOD may reflect the younger patients’ life stage, future expectations, and personal goals (such as career development, family responsibilities, or financial stability) (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019; Baptista et al. Reference Baptista, Santos and Kimura2019; Bakker et al. Reference Bakker, de Vugt and van Vliet2014). Rickstal et al. Reference Van Rickstal, Vleminck and Engelborghs2022 described that patients with YOD and their families want attention not only for medical planning for end-of-life care but also for mental and social health in ACP. Recently, a systematic review by Yung and Wu 2026 highlights a clear need to strengthen ACP for people with YOD. Nevertheless, it provides little concrete guidance on how the ACP process should be structured, including who should initiate the discussion, at which stage in the disease trajectory it should start, and which topics ought to be systematically addressed.
In order to develop specific ACP interventions for patients with YOD, lessons may be learned from existing knowledge from young and middle-aged adults with other serious and chronic illnesses. Both young patient groups with chronic illnesses and dementia (YOD) are in the same stage of their life and may face comparable challenges. These include the impact on work and familial roles, as well as uncertainty about the future. However, important characteristics specific to YOD should also be taken into account. These include a gradual loss of decision-making capacity, uncertain prognosis, an evolving, increasingly central role for family caregivers over time, and the high prevalence of neuropsychiatric symptoms (Gumus et al. Reference Gumus, Multani and Mack2021). Therefore, the aim of this study is to investigate the process of ACP (including its timing, healthcare professionals involved in ACP discussions, and the specific topics addressed) in young and middle-aged adults with serious and chronic illnesses, in order to assess the applicability of these elements to patients with YOD.
Methods
In accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, a scoping review was conducted (Tricco et al. Reference Tricco, Lillie and Zarin2018). The protocol of this scoping review was registered on the Open Science Framework (OSF) on 19 January 2024 (https://osf.io/cjwy4).
Search strategy
A systematic search was conducted in the databases PubMed, EMBASE, and CINAHL until June 2024, using a combination of free-text terms and Medical Subject Headings terms related to synonyms of “advance care planning,” “young and middle-aged adults,” and “serious and chronic illness.” The search was updated in June 2026. A clinical librarian was involved in developing the search strategies. The complete search terms are provided in Supplemental Table 1. A snowballing approach was performed by searching the reference lists of the included studies. In addition, the reference lists of relevant reviews were searched to identify any additional studies.
Eligibility criteria
A comprehensive literature search without limitation on the time of publication included studies across all care settings. We included both qualitative, quantitative, and mixed-methods studies. Studies had to focus on the patient with the serious illness, their family, and their healthcare professionals. A serious chronic illness was defined as a health condition that carries a high risk of mortality and either negatively impacts a patient’s daily functioning or quality of life or excessively strains their family (Kelley and Bollens-Lund Reference Kelley and Bollens-Lund2018). Box 1 presents the inclusion and exclusion criteria.
The Inclusion Criteria and Exclusion Criteria
Box 1 Long description
Criteria are organized into inclusion and exclusion sections, each with labeled rows for design, participants or age, and outcomes. Under inclusion, design includes qualitative study, cohort study, case control, randomized controlled trial, quasi experimental design, and mixed method studies. Inclusion participants are young and middle aged adults with serious and chronic illness and or their family, with mean or median age under 65 years, or subgroup analysis in a younger population, and an age range of 18 to 70. Inclusion also allows healthcare professionals with experience with ACP in young and middle aged adults with serious chronic illness. Serious chronic illness is defined as a condition with high risk of mortality that negatively impacts daily function or quality of life or excessively strains family, with examples listed as cancer, chronic obstructive pulmonary disease, renal failure, dementia, congestive heart failure, and amyotrophic lateral sclerosis. Inclusion outcomes are the process of an ACP tool or intervention for ACP, and the topics of ACP. Under exclusion, design excludes case study and review. Under exclusion, age excludes populations where there is uncertainty about the age of the patients.
Selection process
Following deduplication, the eligibility of titles and abstracts was assessed using ASReview, an open-source software that employs machine learning and state-of-the-art active learning techniques to rank studies based on their textual proximity to previously selected studies. ASReview software version 1.5 was used, which organizes studies based on an initial input of reference papers and continuously refines the order by including and excluding items, with the most relevant positioned at the top. ASReview is designed to enhance efficiency in systematic reviews while minimizing errors, making it valuable for exploratory research questions where broad, less specific search terms are applicable (Schoot et al. Reference Schoot, de Bruin and Schram2021; Oude Wolcherink et al. Reference Oude Wolcherink, Pouwels and van Dijk2023; van Dijk et al. Reference van Dijk, Brusse-Keizer and Bucsán2023). To train ASReview to differentiate between relevant and non-relevant studies, the first author entered 3 relevant studies (PMID: 31243585, 35470742, and 24622210). To enhance the consistency of the review process and calibrate ASReview, 2 researchers compared their assessments of the initial 65 records. ASReview then organized the remaining records based on relevance.
Next, the first author proceeded with screening until reaching the stop-strategy of 100 consecutive irrelevant records and discussed uncertainties with another author. Subsequently, the first author retrieved and evaluated full-text in accordance with the established inclusion and exclusion criteria. In instances where the full text was unavailable, the reviewer tried to contact the study’s author. The excluded studies were checked by 2 reviewers, and disagreements were discussed.
Data extraction and synthesis of results
Data were extracted using a standardized data extraction form to retrieve a comprehensive data set. This data set encompasses general study characteristics (such as authors, design, and methodology), as well as characteristics pertinent to the research objective (such as timing of ACP, healthcare professional who discussed ACP, and topics). The comprehensive data extraction form is available in Supplemental Table 2.
Two authors independently extracted the data. Disagreements were discussed with a third author. The scoping review provided a descriptive content analysis. The topics of ACP were predefined into various domains: legal representative, end-of-life care, physical aspects of care, psychological aspects, social aspects, and spiritual aspects of care (Palliaweb, n.d.).
Quality appraisal
The Mixed Methods Appraisal Tool (MMAT) was used to conduct a critical appraisal of the quality of the included studies (Hong et al. Reference Hong, Pluye and Fàbregues2018). Two authors independently appraised the studies, and results were compared and discussed until consensus was achieved.
Results
The database search yielded 23,849 studies, after excluding 3,061 duplicates. Titles and abstracts were screened using ASReview. The stopping rule (100 consecutive irrelevant papers) was reached after reviewing 7% of the studies. In total, in ASReview, 1,691 studies were manually labeled as irrelevant by the first author (PhD candidate/researcher), while the remaining studies were classified as irrelevant by the machine learning algorithm. Subsequently, 616 full-text studies were assessed for eligibility, of which 46 met the inclusion criteria. An additional 3 studies were identified through reference list screening. Finally, a total of 49 studies were included in this review. We updated the search and identified 3,507 studies, of which 7 met the inclusion criteria and were included in this review. The selection process and exclusions are illustrated in Figure 1.
Flowchart.
Figure 1 Long description
The flowchart outlines the process of identifying studies via databases. It begins with the identification phase, where records are identified from databases totaling 25,508, including Pubmed (2,447), Embase (2,325) and Cinahl (20,736). Duplicate records removed before screening total 3,061. In the screening phase, records supported by AS Review total 23,849, with 1,691 manually and 22,158 automatically screened. Records identified in June 2026 total 3,507. Records excluded by reviewer total 1,075 and by AS Review total 22,158, after reaching the stopping criteria of 100 consecutive irrelevant studies. Additional records excluded by reviewer total 991 and by AS Review total 2,257, after reaching the stopping criteria. Records assessed for eligibility total 875, with 822 excluded due to duplicative studies (79), protocols instead of completed research (5), full text not available (160), abstract submissions (22) and not meeting inclusion criteria (556). Records identified from snowballing/reference lists screening total 3. Finally, 56 studies are included in the review, categorized as Cancer (24), Renal disease (10), Young-Onset Dementia (5), HIV/AIDS (4), Heart disease (3), Other (9) and Mixed population (1).
Study characteristics
Of 57 included studies, 31 were quantitative studies (55%), 14 qualitative studies (25%), and 11 mixed-method studies (20%) (Table 1). Study populations included patients, family members, and healthcare professionals, with 50% of the studies focusing exclusively on patients. Most studies (43%) focused on patients with cancer, while 9% of the studies focused on YOD. In all studies, patients were legally competent, and no information was available about patients lacking decision-making capacity. Moreover, the specific role of family members within the context of ACP was not explicitly addressed in these studies.
Study characteristics
Table 1 Long description
Counts and percentages are reported for 56 studies across study type, focus, disease, population, country, and participant sample size. Study type includes quantitative, 31 (55), qualitative, 14 (25), and mixed method, 11 (20). Focus of the study is intervention, 30 (54), and process, 26 (46). Disease categories include cancer, 24 (43), renal disease, 10 (18), young onset dementia, 5 (9), HIV or AIDS, 4 (7), heart disease, 3 (5), mixed design, 1 (2), and other with an asterisk, 9 (16). Population includes patients, 28 (50), caregivers, 3 (5), healthcare professionals, 2 (4), patients and caregivers, 14 (25), patients and caregivers and healthcare professionals, 5 (9), and patients and healthcare professionals, 4 (7). Country includes Europe, 11 (20), US or Canada, 36 (64), Africa, 2 (4), Asia or Middle East, 3 (5), and other or unknown, 4 (7). Number of participants in study is 0 to 50, 19 (34), 51 to 100, 13 (23), and more than 100, 24 (43).
OTHER*: Lynch syndrome, cirrhosis, organ failure with transplantation, chronic conditions/serious illness, spinal cord condition, multiple sclerosis, and amyotrophic lateral sclerose.
Thirty studies (54%) examined ACP interventions. The remaining 26 studies (46%) focused on the process of ACP. These studies were further categorized into those exploring ACP in clinical practice (n = 23) and those investigating patients’ wishes and preferences regarding ACP (n = 17). Further details can be found in Supplement 3.
Critical appraisal of quality
Overall, the majority of the included studies were found to be of good (37%) to excellent quality (53%), with only a few rated as moderate (8%) and just one classified as low quality (2%).
Most qualitative studies were rated as either good (14%) or excellent quality (86%). The quality of the quantitative studies was evaluated as having good (71%) or excellent quality (16%). However, 3 quantitative studies were rated as moderate quality (10%), and 1 study was classified as low quality (3%). The mixed-method studies were generally assessed as good quality (73%), with 2 studies rated as excellent (18%) and 1 as moderate quality (9%). The results of the MMAT quality assessment are reported in supplement 4.
Process of ACP
Healthcare professional discussing ACP
Preference
Eight qualitative, quantitative, and mixed-method studies reported that participants with various diseases considered physicians to be the most suitable professionals to discuss ACP (Table 2) (Heffner and Barbieri Reference Heffner and Barbieri2000; Blackmer and Ross Reference Blackmer and Ross2002; Fu et al. Reference Fu, Barber and Naing2012; Bires et al. Reference Bires, Franklin and Nichols2018; Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Fenton et al. Reference Fenton, Fletcher and Bowles2021; Alzayer et al. Reference Alzayer, Geraghty and Sebastian2022). The proportion of participants preferring a physician ranged between 4.8% and 63% (Blackmer and Ross Reference Blackmer and Ross2002; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Fenton et al. Reference Fenton, Fletcher and Bowles2021; Alzayer et al. Reference Alzayer, Geraghty and Sebastian2022). Two quantitative studies of patients with cancer and heart failure explicitly mentioned the general practitioner as a suitable person to discuss ACP (Fu et al. Reference Fu, Barber and Naing2012; Stegmann et al. Reference Stegmann, Geerse and Tange2020). In 1 of these 2 studies, 76% of cancer patients mentioned the wish to discuss this with a general practitioner (Stegmann et al. Reference Stegmann, Geerse and Tange2020). None of the studies indicated a preference for either nurses or case managers to discuss these conversations. Regarding YOD, 1 study including YOD healthcare professionals also mentioned the general practitioner as a professional to discuss ACP. Another study of family members of patients with YOD mentioned the wish to discuss ACP with physicians (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019, Reference Van Rickstal, De Vleminck and Engelborghs2023a).
The results of the ACP process
Table 2 Long description
Outcomes and findings are reported for two columns, Practice with 23 and Participants wish or preferences with 17, within a total of 31. For person who discuss ACP, practice lists Physician 14, General practitioner 3, Case manager 1, Nurse practitioner 3, and Nurse 1; wishes or preferences lists Physician 8 and General practitioner 3. For timing of ACP, practice lists Late in trajectory 2 and Shortly after diagnosis 6; wishes or preferences lists Late in trajectory 6 and Shortly after diagnosis 8. For topics of ACP under Legal representative, practice lists Decision maker 1 and Durable power of attorney 4; wishes or preferences lists Decision maker 1 and Durable power of attorney 1. Under End of life care, practice lists Euthanasia 4, Palliative sedation 0, Advance directives 8, Supportive care 1, Refusal or withdrawal of treatment 1, CPR 8, Intubation 2, Wishes for death and dying 1, Preferred place of care or death 3, Funeral or burial preferences 2, Preferences place of care or death 2, and Organ donation 2; wishes or preferences lists Euthanasia 1, Palliative sedation 1, Advance directives 1, Supportive care 3, Refusal or withdrawal of treatment 0, CPR 3, Intubation 3, Wishes for death and dying 3, Preferred place of care or death 4, Funeral or burial preferences 1, and Organ donation 1. Under Physical aspects of care, practice lists Type of care or treatment preferences 3, Prognosis 2, and Symptom management 1; wishes or preferences lists Type of care or treatment preferences 2, Physical well being 1, and Symptom management 1. Under Psychological aspects of care, practice lists Fears and concerns 1 and wishes or preferences lists Worries 1. Under Social aspects of care, practice lists Financial aspects 3 and Residential care 1; wishes or preferences lists Support and involvement of family, caregivers, patient 3. Under Spiritual and cultural aspects of care, practice lists Spirituality 1; wishes or preferences lists Spirituality 1, Religious preferences 1, Knowing how to say goodbye 2, and Personal goals and values 1.
a Advance directives consist of living will, advance directives, and life-sustaining treatment.
b Supportive care is defined as tube feeding, comfort care, and life-extending care.
c Intubation consists of mechanical ventilation and intubation.
Three studies mentioned that specific personal characteristics of healthcare professionals are considered essential for successfully engaging in ACP conversations: trust, empathy, and the quality of the patient-physician relationship were considered more important, while the physician’s specialty (e.g., surgeon or oncologist) was considered less relevant (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019, Reference Van Rickstal, De Vleminck and Engelborghs2023a; Fenton et al. Reference Fenton, Fletcher and Bowles2021).
Some studies also reported that patients and families expressed preferences regarding who should initiate ACP conversations. Five studies mentioned a physician should start this conversation, while 3 studies mentioned that these conversations could also be initiated by patients or family members (Heffner and Barbieri Reference Heffner and Barbieri2000; Fu et al. Reference Fu, Barber and Naing2012; Bires et al. Reference Bires, Franklin and Nichols2018; Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019; Fenton et al. Reference Fenton, Fletcher and Bowles2021). In 4 quantitative and mixed-method studies, 5%–74% expected the physician to take the initiative, while 36% expected family members to do so (Heffner and Barbieri Reference Heffner and Barbieri2000; Fu et al. Reference Fu, Barber and Naing2012; Bires et al. Reference Bires, Franklin and Nichols2018).
Clinical practice
In 14 qualitative, quantitative, and mixed-method studies describing current clinical practice, various physicians were involved in discussing ACP conservations with patients with cancer, heart, and renal failure, including physicians (such as oncologists, nephrologists, specialists, or physicians not otherwise specified) and general practitioners. Regarding YOD, the ACP conversations in practice were discussed by a physician (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019, Reference Van Rickstal, De Vleminck, Morrison, Koopmans, van der Steen, Engelborghs, Neugroschl, Aldridge, Sano and den Block L2020; Fenton et al. Reference Fenton, Fletcher and Bowles2021; Fu et al. Reference Fu, Barber and Naing2012; Heffner and Barbieri Reference Heffner and Barbieri2000; Pendleton et al. Reference Pendleton, Egleston and Fang2025; Phillips et al. Reference Phillips, Dixon and Koehler2024; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Song et al. Reference Song, Ward and Happ2009, Reference Song, Ward and Fine2015, Reference Song, Ward and Lin2016, Reference Song, Manatunga and Plantinga2024; Shaw et al. Reference Shaw, Bouchal and Hutchison2020; Shen et al. Reference Shen, Prigerson and Ratshikana-Moloko2018). The corresponding proportions of quantitative and mixed-method studies for physicians (10%–54.3%) were lower than those for general practitioners (73%) (Heffner and Barbieri Reference Heffner and Barbieri2000; Shen et al. Reference Shen, Prigerson and Ratshikana-Moloko2018; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Fenton et al. Reference Fenton, Fletcher and Bowles2021; Phillips et al. Reference Phillips, Dixon and Koehler2024; Pendleton et al. Reference Pendleton, Egleston and Fang2025). In 1 study with patients with cancer, 8% mentioned the involvement of case managers in the conversations (Stegmann et al. Reference Stegmann, Geerse and Tange2020).
Some studies also mentioned the person who took the initiative to start an ACP conversation in practice. Five studies mentioned ACP was initiated by a physician, while in 4 studies the patients or family members also took the initiative. In 3 quantitative studies, the proportion of patients (66%–77.4%) and family members (29%) taking initiative was higher than that of physicians (5%–21%) (Heffner and Barbieri Reference Heffner and Barbieri2000; Fu et al. Reference Fu, Barber and Naing2012; Phillips et al. Reference Phillips, Dixon and Koehler2024). In addition, 3 studies with patients with renal failure mentioned that ACP was also initiated by nurse practitioners (Heffner and Barbieri Reference Heffner and Barbieri2000; Song et al. Reference Song, Ward and Happ2009, Reference Song, Ward and Fine2015, Reference Song, Ward and Lin2016; Fu et al. Reference Fu, Barber and Naing2012; Van Rickstal et al. Reference Van Rickstal, De Vleminck and Chambaere2023b).
Timing of ACP
Preference
Fifteen qualitative, quantitative, and mixed-method studies presented results regarding the preferred timing of ACP. Eight studies (53%) in patients with cancer, HIV, renal, and heart failure, highlighted a preference for discussing ACP early in the disease trajectory, for example, at diagnosis, before starting dialysis or at an early stage of the disease (not specified) (Table 2) (Sánchez-Tomero et al. Reference Sánchez-Tomero, Rodríguez-Jornet and Balda2011; Fu et al. Reference Fu, Barber and Naing2012; Maragh-Bass et al. Reference Maragh-Bass, Zhao and Isenberg2017; Bires et al. Reference Bires, Franklin and Nichols2018; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Fenton et al. Reference Fenton, Fletcher and Bowles2021). The proportion of participants choosing to discuss this early in the disease course was between 39% and 46% (Fu et al. Reference Fu, Barber and Naing2012; Maragh-Bass et al. Reference Maragh-Bass, Zhao and Isenberg2017; Stegmann et al. Reference Stegmann, Geerse and Tange2020). Remarkably, in 6 other (40%) studies, patients with cancer and heart failure mentioned the wish to discuss ACP later in the disease trajectory (e.g., after treatment failure, near death, or as health declines) (Heffner and Barbieri Reference Heffner and Barbieri2000; Fu et al. Reference Fu, Barber and Naing2012; Bires et al. Reference Bires, Franklin and Nichols2018; Shaw et al. Reference Shaw, Bouchal and Hutchison2020; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Nouri et al. Reference Nouri, Barnes and Shi2021). The proportion of participants choosing to discuss this later is between 11% and 58% (Heffner and Barbieri Reference Heffner and Barbieri2000; Fu et al. Reference Fu, Barber and Naing2012; Maragh-Bass et al. Reference Maragh-Bass, Zhao and Isenberg2017; Stegmann et al. Reference Stegmann, Geerse and Tange2020).In addition, 2 other studies of patients with cancer mentioned that ACP should be reconsidered throughout their life at various times in their disease trajectory (Fenton et al. Reference Fenton, Fletcher and Bowles2021; Nouri et al. Reference Nouri, Barnes and Shi2021). Regarding YOD, family members of patients with YOD mentioned the wish to discuss ACP shortly after diagnosis, but allowing time to process the diagnosis (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019, Reference Van Rickstal, De Vleminck, Morrison, Koopmans, van der Steen, Engelborghs, Neugroschl, Aldridge, Sano and den Block L2020).
Clinical practice
The timing of ACP in clinical practice corresponds with the preferences described in the previous paragraph. Two studies in patients with cancer showed that the timing of ACP varied between shortly after diagnosis (e.g., at diagnosis or during the first day of dialysis) or later in the disease trajectory (e.g., after treatment failure or when patients had 1 to 2 months to live) (Fu et al. Reference Fu, Barber and Naing2012; Bires et al. Reference Bires, Franklin and Nichols2018). In 1 study with family members of patients with YOD, advance directives were completed either before the dementia diagnosis or after the diagnosis, without re-evaluation after diagnosis (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019). Patients with renal failure and their families mentioned ACP was discussed on the first day of dialysis (Song et al. Reference Song, Ward and Happ2009, Reference Song, Ward and Fine2015, Reference Song, Ward and Lin2016, Reference Song, Manatunga and Plantinga2024). Two quantitative studies about cancer patients showed a higher proportion of ACP discussions occurring later in the disease trajectory (70%) compared to those taking place shortly after diagnosis (25%). Only 1% of the cancer patients reported that the ACP discussions occur after treatment failure (Fu et al. Reference Fu, Barber and Naing2012; Bires et al. Reference Bires, Franklin and Nichols2018).
Topics in ACP
Preference
Various topics mentioned in 10 studies were considered relevant to discuss in ACP conversations (Table 2) (Blackmer and Ross Reference Blackmer and Ross2002; Al-Jahdali et al. Reference Al-Jahdali, Bahroon and Babgi2009; Sánchez-Tomero et al. Reference Sánchez-Tomero, Rodríguez-Jornet and Balda2011; Tobler et al. Reference Tobler, Greutmann and Colman2012; Janssen et al. Reference Janssen, Spruit and Schols2013; Maragh-Bass et al. Reference Maragh-Bass, Zhao and Isenberg2017; Shen et al. Reference Shen, Prigerson and Ratshikana-Moloko2018; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Nouri et al. Reference Nouri, Barnes and Shi2021; Alzayer et al. Reference Alzayer, Geraghty and Sebastian2022). The majority expressed a preference for ACP topics focused on end-of-life care (Al-Jahdali et al. Reference Al-Jahdali, Bahroon and Babgi2009; Sánchez-Tomero et al. Reference Sánchez-Tomero, Rodríguez-Jornet and Balda2011; Tobler et al. Reference Tobler, Greutmann and Colman2012; Janssen et al. Reference Janssen, Spruit and Schols2013; Maragh-Bass et al. Reference Maragh-Bass, Zhao and Isenberg2017; Shen et al. Reference Shen, Prigerson and Ratshikana-Moloko2018; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Nouri et al. Reference Nouri, Barnes and Shi2021; Alzayer et al. Reference Alzayer, Geraghty and Sebastian2022). These topics included euthanasia, palliative sedation, advance directives, funeral preferences, and preferences for place of care/death. Various quantitative studies reported the frequency of specific topics, including supportive care (14%–78.3%), CPR (75%), and preferred place of care or death (15%–57.5%) (Tobler et al. Reference Tobler, Greutmann and Colman2012; Janssen et al. Reference Janssen, Spruit and Schols2013; Shen et al. Reference Shen, Prigerson and Ratshikana-Moloko2018; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Alzayer et al. Reference Alzayer, Geraghty and Sebastian2022). No information on preferred topics for patients with YOD was available.
Physical aspects of care were mentioned by patients with cancer, renal, and heart failure (Sánchez-Tomero et al. Reference Sánchez-Tomero, Rodríguez-Jornet and Balda2011; Tobler et al. Reference Tobler, Greutmann and Colman2012; Shen et al. Reference Shen, Prigerson and Ratshikana-Moloko2018), such as treatment preferences or symptom management.
Regarding psychological aspects of care, 57% of patients with heart failure expressed the importance of discussing worries during ACP (Stegmann et al. Reference Stegmann, Geerse and Tange2020). No other psychological aspects were discussed in other studies.
Social aspects of care included preferences for family visits, with more than 50% of patients with heart failure considering it important to discuss the role of family and friends (Tobler et al. Reference Tobler, Greutmann and Colman2012; Nouri et al. Reference Nouri, Barnes and Shi2021).
Spiritual and cultural aspects of care were mentioned by patients with heart failure, with over 50% valuing spirituality and fewer than 50% considering church services important (Tobler et al. Reference Tobler, Greutmann and Colman2012; Stegmann et al. Reference Stegmann, Geerse and Tange2020).
Clinical practice
In 18 studies describing clinical practice, patients with cancer, renal failure, and YOD commonly discussed advance directives (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019, Reference Van Rickstal, De Vleminck, Morrison, Koopmans, van der Steen, Engelborghs, Neugroschl, Aldridge, Sano and den Block L2020, Reference Van Rickstal, Vleminck and Engelborghs2022, Reference Van Rickstal, De Vleminck and Engelborghs2023a, Reference Van Rickstal, De Vleminck and Chambaere2023b; Fu et al. Reference Fu, Barber and Naing2012; Heffner and Barbieri Reference Heffner and Barbieri2000; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Shen et al. Reference Shen, Prigerson and Ratshikana-Moloko2018, Reference Shen, Gonzalez and Leach2020; Tobler et al. Reference Tobler, Greutmann and Colman2012; Cousino et al. Reference Cousino, Schumacher and Magee2019; Patel et al. Reference Patel, Ryan and Tisnado2021; Phillips et al. Reference Phillips, Dixon and Koehler2024; Song et al. Reference Song, Ward and Happ2009, Reference Song, Ward and Fine2015, Reference Song, Ward and Lin2016; Vokinger et al. Reference Vokinger, Pennarola and Kube2025). Three studies reported the frequency of specific topics, including CPR (68%–90%), feeding tube (87%), preferred place of care/death (81%), mechanical ventilation (51%–79 %), advance directives (74%), and power of attorney (27%) (Heffner and Barbieri Reference Heffner and Barbieri2000; Shen et al. Reference Shen, Prigerson and Ratshikana-Moloko2018; Phillips et al. Reference Phillips, Dixon and Koehler2024). The topics of euthanasia, refusal and withdrawal of treatment, residential care, organ donation, funeral preferences, and preferences for place of care and death were discussed in patients with YOD (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019, Reference Van Rickstal, De Vleminck, Morrison, Koopmans, van der Steen, Engelborghs, Neugroschl, Aldridge, Sano and den Block L2020, Reference Van Rickstal, Vleminck and Engelborghs2022, Reference Van Rickstal, De Vleminck and Engelborghs2023a, Reference Van Rickstal, De Vleminck and Chambaere2023b).
Physical aspects of care were discussed in people with cancer, heart, and renal failure (Cousino et al. Reference Cousino, Schumacher and Magee2019; Shen et al. Reference Shen, Gonzalez and Leach2020; Stegmann et al. Reference Stegmann, Geerse and Tange2020; Pendleton et al. Reference Pendleton, Egleston and Fang2025).
Regarding social aspects of care, only financial concerns and residential care were discussed by patients with YOD (such as post-death financial planning) (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019, Reference Van Rickstal, De Vleminck, Morrison, Koopmans, van der Steen, Engelborghs, Neugroschl, Aldridge, Sano and den Block L2020, Reference Van Rickstal, Vleminck and Engelborghs2022).
Notably, only 1 study of cancer patients described psychological or spiritual aspects of care, such as discussing fears and concerns (57%) and important considerations about spirituality (61%) (Pendleton et al. Reference Pendleton, Egleston and Fang2025).
ACP-interventions or tools
ACP interventions and their characteristics
Thirty studies described ACP interventions. Various interventions have been developed to facilitate ACP, differing in format, target population, duration, and setting (Table 3). Remarkably, 19 interventions were specifically designed for cancer patients, while none were intended for patients with YOD. Several interventions were designed for both patients and their families, with an emphasis on family involvement. However, the specific contribution of family members within these interventions was not explicitly described.
The interventions and their characteristics
Table 3 Long description
Columns list intervention or tool, abbreviation, type of intervention, for whom, characteristics of intervention, duration in minutes and timing, person who discusses this, place, and frequency. Cancer focused entries include Disease specific ACP program, ACP program; Voicing my choices, VMC; AYA ACP video; PREPARE; Looking Ahead patient decision aid, PtDA; Video and book about ACP; Symptom Management Service, SMS; Palliative Care Intervention; ENABLE; PNPOM; SHARE; Coaching and QPL; and Question Prompt List, QPL. Non cancer entries include Patient centred ACP, PC ACP for kidney patients and surrogates; SPIRIT for renal patients and surrogates; Goals of care intervention, GoC for heart failure patients and professionals; NPCI for HIV patients; VOICE for renal patients and caregivers; and ConCure SM for patients with MS, caregivers and physicians. Reported durations include 60 minutes for One to one conversation with a checklist, PC ACP, ENABLE, Coaching and QPL, and ConCure SM; 57 minutes for PtDA with a range from 30 to 180; 45 minutes for NPCI; 30 minutes per call for SMS; 20 minutes for the online video in ACP video and book; and VOICE sessions of 96 minutes then 62 minutes with ranges shown for each session. SPIRIT lists a first session between 30 and 150 and an optional second session between 5 and 75, with discussion at the centre or by video conferencing and an optional follow up at home. Frequency details include 5 visits for PC intervention, minimum of 7 contacts for NPCI, at least 5 visits for PNPOM, SHARE visits designed at least monthly for three months, and two sequentially structured sessions for VOICE, while several rows leave duration, place, frequency, or person who discusses this blank.
Information regarding the exact timing of these interventions was limited, making it difficult to determine when ACP was most commonly initiated within the disease trajectory.
The majority of ACP interventions were delivered by a nurse. However, among studies in patients with cancer, ACP interventions were provided by a broad range of healthcare professionals, including physicians, social workers, and care coordinators.
Topics discussed in the ACP interventions
The ACP interventions covered a wide range of topics (Table 4). The majority of topics were focused on end-of-life care, including supportive care and preferences regarding place of care and death. Notably, the topics of euthanasia, palliative sedation, intubation, funeral preferences, and organ donation were discussed in 1 or 2 interventions.
The topics covered in the interventions
Table 4 Long description
Outcomes and findings are grouped by topic area, with a practice item, a count labeled N, and the interventions linked to each practice. Under, Topics, legal representative includes durable power of attorney with N 10 and decision maker with N 5. End of life care lists euthanasia N 1, palliative sedation N 2, advance directives N 14, supportive care N 2, refusal or withdrawal of treatment N 4, CPR N 2, intubation N 1, wishes for death and dying N 4, preferred place of care and death N 1, and funeral or burial preferences N 1, plus organ donation with no N shown. Goals of care lists goals of care with N 4. Physical aspects of care include type of care or treatment preferences N 6, physical well being N 2, illness understanding N 3, education of therapy N 1, prognosis N 5, and symptom management N 7. Psychological aspects of care include anxiety worries feelings or concerns N 5, emotional well being N 1, coping mechanism N 3, and eliciting hopes N 2. Social aspects of care include financial concerns N 2, communication with family and healthcare professionals N 8, support and involvement of family caregivers or patients N 8, local community resources N 2, and residential care N 5. Spiritual and cultural aspects of care include spirituality N 8, lifestyle N 3, cultural values N 2, how I wish to be remembered N 4, what I would like my family to know N 5, and personal goals and values N 3.
Intervention**: ACP-program, advance care planning-program; VMC, voicing my choices; one-to-one, one-to-one conversation with a checklist; ACP-intervention, advance care planning intervention; AYA ACP video, adolescents and young adults advance care planning video; PC-ACP, patient-centered ACP; PREPARE, PREPARE for your care; PtDA, looking ahead: patient decision aid; SPIRIT, sharing patient’s illness representations to increase trust; MTMWMV, my thoughts, my wishes, my voice; ACP video and book, video and book about ACP; PREPARE-AD, PREPARE plus an easy-to-read advance directive; ADI, the toolkit after death Bereaved Family Member Interview; PC intervention, palliative care Intervention; GoC, goals-of-care intervention; NPCI, a nurse-led palliative care intervention; ENABLE, educate, nurture, advise, before life ends: palliative care consult; PNPOM, culturally tailored patient navigator intervention; SHARE, Supportive Care Management for Patients with Hematologic Cancers by Registered Nurses; EIPC, early integrated palliative care; coaching and QPL, patient coaching and question prompt lists; QPL, question prompt list; VOICE, short-term advance care planning intervention (VOICE); ConCure-SM.
a Advance directives consist of life-sustaining treatment.
b Supportive care is defined as preferences of care, comfort care, selecting care (blood transfusion), and life-prolonging care.
c Communication with family and healthcare professionals consists of barriers, facilitators, and preferences for communication.
d Support and involvement of family/caregivers/patient consists of social support, social problems, family involvement, and relationships.
e An example of a local community resources is Alzheimer associations.
Physical aspects of care were included across interventions targeting patients with cancer, HIV, renal failure, heart failure, multiple sclerosis (MS), and renal failure.
Psychological aspects of care were only addressed in interventions with cancer, HIV, and MS patients, and focused especially on anxiety, worries, feelings, and concerns.
Social aspects of care, such as communications with family or local community resources, were addressed in interventions for cancer, HIV, MS, and heart failure patients.
Spiritual and cultural aspects of care were incorporated into interventions for cancer, HIV, renal failure, and MS patients, with a stronger emphasis on spirituality than on cultural values.
Discussion
Main findings
To inform the development of ACP interventions for patients with YOD, this review aimed to elucidate the ACP process in a heterogeneous population of young and middle-aged adults with serious and chronic illnesses, and to assess the applicability of these approaches to the YOD context. This review emphasizes that ACP should be discussed by a trusted physician at an appropriate stage in the disease trajectory, such as shortly after diagnosis, or later in the disease trajectory, such as after treatment failure, during health decline, or near the end of life. Moreover, ACP should be approached holistically, addressing physical, psychological, social, and spiritual/cultural dimensions of care. All identified findings are applicable to young people with a serious illness, as they face similar life-stage challenges. However, it is important to consider the differences between YOD and other diseases, particularly regarding the loss of decision-making capacity.
Healthcare professional discussing ACP
The majority of studies indicated that ACP should be discussed by a physician, although their specific function was not clearly defined. The physician’s specialty appeared less relevant than personal characteristics such as trust, empathy, and the quality of the patient-physician relationship. It remains unclear whether there is a preference for the involvement of nurses or case managers in ACP. Notably, nurses or case managers were not identified by participants in the included studies as preferred healthcare professionals, which may be attributable to the fact that these studies did not specifically examine the role of nurses in ACP. Further research should focus on the role of nurses or case managers in ACP. Bolt et al. (Reference Bolt, van der Steen and Schols2021) noted that physicians are legally responsible for ACP, whereas nurses may be more closely involved with patients and their families. This distinction suggests that nurses could discuss the social, psychological, and spiritual domains in ACP. In contrast, a purely doctor-driven approach could lead to predominantly medically oriented ACP discussions. This could indicate that physicians could discuss medical topics (such as end-of-life decisions, advance directives, and physical aspects of care), while nurses or case managers could address non-medical domains in a multidisciplinary collaboration (Bolt et al. Reference Bolt, van der Steen and Schols2021). Alternatively, physicians could be more educated to include these other domains as well.
Notably, in clinical practice, ACP conversations were predominantly initiated and facilitated by physicians, whereas the implementation of ACP interventions was primarily undertaken by nurses. A possible explanation is that deploying nurses or case managers for interventions may be relatively more cost-effective than deploying physicians (Loonwijzer n.d.). In addition, nurses and case managers are often considered well-positioned to discuss ACP conversations, due to their active involvement, accessibility, and the trusting relationships they establish with patients and families (Ke et al. Reference Ke, Huang and O’Connor2015; Huckle et al. Reference Huckle, Silies and Kirchner2022; Lee et al. Reference Lee, Cui and Kim2025; Putker et al. Reference Putker, Perry and Chalkiopoulos2025). It is precisely for this reason that it would be interesting to have nurses and case managers conduct ACP discussions as well, so ACP becomes a multidisciplinary process. In practice, it may neither be feasible nor necessary for physicians to lead all ACP discussions, given time constraints (Curtis and Patrick Reference Curtis and Patrick1997; Tilburgs et al. Reference Tilburgs, Vernooij-Dassen and Koopmans2018). Another explanation is that nurses and case managers often have more opportunities to build trusting relationships with the people with dementia and their family members. Such relationships may facilitate ACP discussions about non-medical aspects of care, including psychological and cultural topics (Tilburgs et al. Reference Tilburgs, Vernooij-Dassen and Koopmans2018). This highlights the importance of collaboration between different healthcare professionals, with physicians maintaining the primary responsibility.
In particular, family members of patients with YOD reported a preference for discussing ACP with physicians (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019). According to healthcare professionals working with YOD patients, general practitioners may be particularly well-suited to facilitate ACP discussions due to their sustained, trust-based relationships with patients and families, as well as their regular and accessible contact (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Engelborghs2023a). Dementia case managers could also play a critical role in offering home visits, for example, to discuss some topics of ACP (Tilburgs et al. Reference Tilburgs, Vernooij-Dassen and Koopmans2018).
Several studies highlighted the proactive role of patients and family members in initiating ACP conversations, indicating the importance of ensuring sufficient knowledge about ACP for both groups. This challenges the assumption that this responsibility rests exclusively with healthcare professionals (Frandsen et al. Reference Frandsen, Dieperink and Detering2022). Consequently, it is imperative that healthcare professionals adopt an open and receptive attitude toward initiatives from patients and their families. ACP is a collaborative dialogue involving patients, family members, and healthcare professionals. In this process, patients are encouraged to reflect on and articulate their preferences for future care.
For patients with YOD, the active involvement of family members in ACP is crucial. A recent Delphi study underscored and recommended the importance of including family in ACP discussions (van der Steen et al. Reference van der Steen, Van den Block and Nakanishi2025). Due to progressive cognitive decline, patients with YOD may experience diminished capacity for future decision-making, thereby necessitating the role of family members as surrogate decision-makers.
Timing of ACP
While most studies included in this review indicated a preference for initiating ACP either shortly after diagnosis or at a later stage, the optimal timing is contingent upon individual readiness. This readiness is influenced by how patients and their families cope with the diagnosis. Furthermore, the availability of treatment options may also affect the timing of ACP, underscoring the need for a personalized approach (Wang and Sheng Reference Wang and Sheng2022).
Notably, the review findings showed that, in clinical practice, ACP conversations are more often initiated shortly after diagnoses rather than at later stages of the disease trajectory. Only 2 studies indicated that ACP should be revisited at various times throughout the disease trajectory (Michael et al. Reference Michael, O’Callaghan and Clayton2013; Fenton et al. Reference Fenton, Fletcher and Bowles2021). No other studies acknowledged that ACP involves a series of conversations rather than a single event. However, in accordance with existing guidelines and the quality framework, ACP should not be regarded as a one-time event, but rather as a dynamic ongoing process involving multiple conversations over time (Wang and Sheng Reference Wang and Sheng2022; ZonMw n.d.).
In translating these findings to the context of YOD, it is important to note that the Dutch Guidelines of dementia recommend early initiation of ACP, shortly after diagnosis, given the anticipated decline in mental capacity (Pallialine, n.d.). In practice, this implies that ACP should start shortly after diagnosis and continue throughout the disease trajectory. One study included in this review reported that patients with YOD expressed a desire to engage in ACP discussions soon after diagnosis, while also emphasizing the importance of having sufficient time to process the diagnosis and to establish a trusting relationship with the physician (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Aldridge2019). A similar conclusion was drawn in a recent Delphi study about dementia, which recommended initiating ACP around the time of diagnosis, while postponing discussions about end-of-life care to a later stage (a few months after disclosure of diagnosis), consistent with the conceptualization of ACP as a continuous process (van der Steen et al. Reference van der Steen, Van den Block and Nakanishi2025). A pilot intervention trial study for dementia care noted that early implementation of ACP could be hindered by attitudes from healthcare professionals. Some professionals are reluctant to involve people with dementia due to uncertainty about decisional capacity or a perceived need to protect patients (Bosisio et al. Reference Bosisio, Sterie and Rubli Truchard2021).
Topics relevant to ACP
The studies included in this review indicate that ACP in clinical practice remains predominantly focused on medical decision-making. This includes end-of-life care, the formulation of advance directives, preferences regarding resuscitation, and the potential withdrawal of treatment (Van Rickstal et al. Reference Van Rickstal, De Vleminck and Engelborghs2023a). Psychological and spiritual/cultural aspects of care were mentioned in only 1 study, despite several studies highlighting a clear preference for a holistic approach that incorporates these aspects into ACP conversations. In recent years, however, the conceptualization of ACP has broadened to encompass aspects beyond strictly medical concerns (Palliaweb, n.d.). This emerging perspective may facilitate the incorporation of psychological and spiritual/cultural aspects in future ACP practices.
In the specific context of YOD, Van Rickstal et al. 2022 underscore the importance of addressing not only the medical domain, but also the psychological and social domains of care (Van Rickstal et al. Reference Van Rickstal, Vleminck and Engelborghs2022). The findings of this review further reveal that certain themes are unique to the YOD population, distinguishing it from other chronic conditions. The theme of residential care is specific to the YOD population. In addition, themes such as euthanasia and financial insecurity emerge as relevant early in the disease trajectory, as people with YOD are often still decisionally capable. This early-stage consideration distinguishes these themes from those in other serious chronic diseases.
Euthanasia also emerged as a distinct theme, possibly driven by anticipated unbearable suffering and concerns regarding the future impact of the disease on close family (van Rickstal 2023). Notably, the studies addressing euthanasia were conducted in the Netherlands, which may explain this emphasis given the legal status of euthanasia in the country. The consideration of residential care may be explained by the loss of autonomy and the fear of prolonged, hopeless suffering (Bolt et al. Reference Bolt, van der Steen and Schols2021), as well as the substantial burden placed on families (Kaiser and Panegyres Reference Kaiser and Panegyres2006; Lim et al. Reference Lim, Zhang and Lim2018). The relatively early age at which dementia is diagnosed often leads to premature termination of employment due to progressive cognitive decline, thereby compromising financial security (Mayrhofer et al. Reference Mayrhofer, Greenwood and Smeeton2021). This may explain the prominence of financial concerns within this population.
Recommendations for designing ACP interventions for YOD
No ACP interventions specifically targeting people with YOD were identified. Based on the findings of this review, several recommendations can be made for the design and implementation of future ACP interventions for patients with YOD. First, the intervention should be initiated by a physician, in close collaboration with the patient and their family members. Physicians, general practitioners, and case managers should collaborate closely to ensure that ACP is implemented as a multidisciplinary process, with 1 professional taking the lead in coordinating this collaboration. Given the progressive cognitive decline associated with YOD, which ultimately impairs decision-making capacity, the active involvement of family members is essential throughout the ACP process (van der Steen et al. Reference van der Steen, Van den Block and Nakanishi2025).
Second, future ACP interventions should be introduced shortly after diagnosis and revisited regularly throughout the disease trajectory. Related to this recommendation, certain topics should be addressed early in the trajectory, whereas others may be appropriately discussed at later stages. We hypothesize that topics such as legal representative, treatment preferences, and symptom management may be discussed early in the ACP process, whereas preferences related to death and dying may be more appropriate for later stages of the disease trajectory. Further research is needed to confirm this hypothesis.
Furthermore, effective ACP interventions for people with YOD should take a holistic approach, addressing end-of-life care alongside physical, social, psychological, spiritual/cultural aspects, including financial considerations, decisions about residential care, and euthanasia.
Notably, the review identified a lack of evidence concerning the specific roles and responsibilities of family members within ACP processes for YOD. Further research involving family members is required to elucidate their roles and responsibilities in ACP. Further research is necessary to identify the most effective interventions for patients with YOD.
Study limitations and strengths
This review has several strengths, particularly the use of a comprehensive search strategy that incorporated a wide range of synonyms. Various terms related to ACP were included, acknowledging that although the term ACP was formally introduced around 1990, the concept was already well-established in practices such as end-of-life care and palliative care. Although not an inclusion criterion, most included studies were of good to excellent methodological quality.
Nonetheless, the review also had some limitations. First, considerable heterogeneity within the chosen study populations may affect the generalizability of the findings to YOD. In particular, the specific characteristics of YOD, such as the differences in prognosis uncertainty, prevalence of neuropsychiatric symptoms, and the progressive loss of decision-making capacity, may limit the transferability of findings derived from other populations. However, this diversity also enhances the contextual relevance of the results by reflecting the complexity of real-world care settings. At the same time, the inclusion of a broad range of ACP interventions provides a valuable overview of potential approaches and offers a foundation for developing tailored interventions for YOD.
Second, ASReview offered a valuable framework for managing the large volume of studies. However, it also presented a notable limitation. The software ranked studies based on their similarity to those previously selected by the author, thereby introducing an element of subjective judgment into the selection process. Therefore, to alleviate this, a second author was involved in this process with ASReview.
Conclusion
This review found that ACP in the context of serious and chronic illnesses is mostly discussed by a physician, although many interventions are delivered by nurses. ACP may occur shortly after diagnosis or at a later stage, but often without sufficient consideration of the psychological and spiritual dimensions of care. The preferences identified in this review suggest that ACP should occur at an appropriate stage in the disease trajectory, such as shortly after diagnosis or later. Rather than being led solely by a physician, ACP should be approached as a multidisciplinary process, in which physicians, general practitioners, nurses, and case managers collaborate closely. A multidisciplinary team effort may facilitate the initiation and integration of ACP, supported by a holistic approach that incorporates the physical, social, psychological, and spiritual or cultural dimensions of care.
These elements of ACP are relevant and applicable to the context of YOD, where early and ongoing engagement in ACP is crucial. Given the progressive cognitive decline in YOD, ACP should be initiated shortly after diagnosis and revisited throughout the disease trajectory, with active involvement of family members.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951526103848.
Data availability statement
The data set used for this scoping review (list of included studies and extracted data) is available from the corresponding author upon reasonable request.
Acknowledgments
I would like to thank Charles David for his valuable feedback. Copilot was used to assist with language editing and improving clarity of the manuscript. All content was reviewed, verified, and approved by the authors.
Author contributions
Scoping review concept: L.L.V., M.v.E., P.d.G., and B.v.M. Acquisition, analysis, or interpretation of data: L.L.V., S.H., M.v.E., P.d.G., K.V., and B.v.M. Drafting of the manuscript: L.L.V., S.H., M.v.E., and P.d.G. Critical revision of the manuscript for important intellectual content: B.v.M. and K.V. Approved the version to be published: L.L.V., S.H., B.v.M., K.V., P.d.G., and M.v.E. Participated sufficiently in the work to take public responsibility for appropriate portions of the content: L.L.V., S.H., B.v.M., K.V., P.d.G., and M.v.E.
Funding
L.L.V. is appointed at YOD-Included, which is a public–private partnership receiving funding from the Netherlands Organization for Health Research and Development (ZonMw) #10510032120002.
Competing interests
The authors declare none.
Ethical approval
This study is a scoping review and did not involve any human participants or animals. Therefore, ethical approval and patient consent were not required.
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