Table 2.
Authors, country | Design study | Aim(s) | Sample characteristics | Implementation characteristics | Strategies for the implementation of SDM | JBI quality |
---|---|---|---|---|---|---|
Henselmans et al. [14], the Netherlands | RCT | The CHOICE (Choosing Treatment Together in Cancer at the End of Life) trial aims to add high‐quality evidence on the effectiveness of communication interventions by examining both the separate and combined effect of an SDM training for medical oncologists and a patient communication aid (PCA) on observed SDM about palliative systemic treatment. | 24 oncologists and 192 patients diagnosed with metastasis or inoperable tumours. |
PROFESSIONAL TRAINING Location: Hospital Participants: Oncologists with patients Timing: not reported Decision type: Treatment |
Training modality: CHOICE (Choosing Treatment Together in Cancer at End of Life). Measurement instruments: OPTION 12, four SDM, nine‐item SDM Questionnaire, five‐item Patient Satisfaction Questionnaire, 16‐item Decisional Conflict Scale PtDA: PCA Outcome: Oncologists were trained in SDM through the CHOICE programme. Participation data: Oncologist training improved SDM (p < 0.001); PCA did not. The combination was equal to the effect of training alone. Training improved patient‐reported SDM; PCA did not; the combination did not enhance the training effect. The condition did not affect patient satisfaction (p = 0.97) or oncologist satisfaction (p = 0.26) with communication. The condition did not affect patient decision regret (p = 0.11) or patient quality of life (p = 0.87). Consultations lasted 5 min longer for oncologists trained in unassisted patient consultations (p = 0.01). |
84.6% |
Bos‐van den Hoek et al. [15], the Netherlands | RCT with a pre‐posttest group | Examine the effects of a blended online learning for oncologists about SDM in palliative oncological care and to compare this blended format with a more extensive, fully in‐person face‐to‐face training format. | 15 oncologists. |
PROFESSIONAL TRAINING Location: Hospital Participants: Oncologists with patients Timing: Not reported Decision type: Palliative treatment |
Training modality: Professional training through e‐learning. Measurement instruments: OPTION 12, four SDM, PSQ. PtDA: Pocket card with the four steps of SDM and example phrases. Outcome: Online training to implement SDM. Participation data: Oncologists demonstrated significantly higher levels of SDM after blended online learning, as measured by OPTION 12 (p < 0.001) and four SDM (p < 0.001). Oncologists' satisfaction with the conversation (p < 0.001) improved. |
53.8% |
Mohan et al. [16], USA | Quasi‐experimental | Describe communication practices of physicians making treatment decisions for unstable critically ill patients with end‐stage cancer, using a shared decision‐making model. | 13 emergency department physicians, eight intensivists and six general practitioners. |
PROFESSIONAL TRAINING Location: Hospital Participants: Physicians with patients Timing: Critical unstable situations Decision type: Treatment (ICU or palliative care) |
Training modality: Not reported. Measurement Instruments: Behaviours, communication skills. PtDA: Not applicable. Outcome: Simulation to assess how physicians make decisions for terminal cancer patients in a critical situation using the SDM. Participation data: Predictors of communication skills: Physician characteristics, years since graduation, general and associated specialties. Behaviour ‘Obtaining and responding to preferences’ p = 0.03, ‘affirming patient decisions’ p = 0.01 were negatively associated with years since graduation. Predictors of treatment decisions: Intensivists and emergency physicians more likely to admit to the ICU p = 0.21. Obtaining the predicted palliation patient objective skill score p = 0.04. |
66.7% |
Van Veenendaal et al. [17], the Netherlands | RCT, protocol | Address the effectiveness of an individual SDM training programme using the concept of deliberate practice. | Implementation phase study, intended to be conducted across 12 hospitals. |
PROFESSIONAL TRAINING Location: Hospital Participants: Oncologists with their patients Timing: During the clinical encounter Decision type: Treatment |
Training modality: e‐learning, personal learning and in‐person coaching. Measurement instruments: OPTION‐5, SCPS, SDM‐Q‐9. PtDA: Not applicable. Outcome: Training for oncologists to implement SDM Participation data: Not applicable. |
69.2% |
Oostendorp et al. [18], the Netherlands | RCT phase II | Evaluate any harmful effects of the DAs as compared with usual care, regarding patients' well‐being and specifically anxiety. | 128 patients with colorectal or breast cancer and 20 nurses. |
DECISION AIDS: Location: Hospital Timing: Not reported Participants: Nurses and oncologists with patients Decision type: Second‐line chemotherapy treatment |
Information modality: PtDA booklets with risks and benefits of treatment are presented, including a life expectancy illustration. Measurement instruments: HADS for anxiety and HRQoL PtDA: Colorectal and breast cancer patients, unspecified type. Outcome: Oncologists completed an inclusion form, and nurses completed a questionnaire about the interview with PtDA. Patients filled out an initial questionnaire at enrolment and two follow‐up questionnaires one week and eight weeks after receiving treatment‐related information. Participation data: Decision‐related measures (the intervention group had stronger treatment preferences, p = 0.03). Treatment attitudes (both groups equally satisfied with their treatment and its consequences). |
61.5% |
Dharmarajan et al. [19], USA | Quasi experimental | Build a video decision aid for hospitalised patients with advanced cancer referred for PRT and prospectively test its efficacy in reducing decisional uncertainty, improving knowledge, increasing treatment readiness and readiness for palliative care consultation and its acceptability among patients. | 40 patients with advanced cancer: 23% prostate cancer, 18% lung cancer and 15% ovarian cancer. |
DECISION AIDS Location: Hospital and outpatient clinic Participants: Not reported Timing: Hospitalised patients about to receive PRT Decision type: Receiving PRT |
Information modality: Video decision aids: (1) The radiation simulation process, (2) What to expect during treatment, (3) Side effects, (4) The purpose of palliative care. Patients then answer questions within 24 h after viewing. Measurement instrument: Three‐item Decisional Conflict Scale. PtDA: Video. Outcome: Through the video, patients are educated to make decisions about palliative care and receiving PRT when hospitalised. Participation data: Patients were more confident in their decision (p = 0.02). The effect was greater among patients without prior PRT (p = 0.02), with no difference with prior PRT (p = 0.28). Willingness to accept PRT improved (p = 0.04) and patients felt more prepared for PRT after the video. Mean knowledge increased from 60.4 to 88.3, p < 0.001. |
77.7% |
Agarwal and Epstein [20], USA | Narrative review | Emphasise the undeniable value, current challenges and recent improvements in supporting optimal ACP | No reported. |
IMPLEMENTATION PROGRAMMES Location: Not reported Participants: Medical team with patients and families Timing: Not reported Decision type: Treatment, palliative care |
Information modality: Not reported. Measurement POLST. DAs: Not applicable Outcome: Patient treatment expectations and understanding of the illness, uncertainty of prognosis with evolving cancer therapies, optimal timing of SDM discussions, barriers in doctor–patient communication, heterogeneity in quality, content, approach and documentation of SDM discussions. Participation data: Improvement Strategies of Integration of primary palliative care and nurse‐led interventions, patient‐centred and value‐focused SDM models, including the use of patient‐reported outcomes, participation in interactive SDM discussions, use of technology to enhance communication, standardisation of SDM principles and documentation. Empathetic and honest conversations among patients, caregivers and healthcare professionals can prevent aggressive and unwanted end‐of‐life care. |
18% |
Dionne‐Odom et al. [21], USA | RCT | Assess the feasibility, acceptability and potential efficacy of individual intervention components of CASCADE (CAre Supporters Coached to be Adept DEcision Partners), an early telehealth, palliative care coach‐led decision support training intervention for caregivers. | 46 patients and 46 family members. |
IMPLEMENTATION PROGRAMMES Location: Tertiary academic medical centre Participants: Oncologists with patients and family members Timing: Newly diagnosed with advanced cancer Decision type: Treatment, roles of values when deciding with and for others and supporting the completion of advance directives and being a durable power of attorney for healthcare |
Information modality: Not reported. Measurement instrument: Rini Decision Influence Scale. PtDA: Not applicable. Outcome: CASCADE: (1) Psychoeducation for effective decision support (one or three sessions for deciding on treatment), (2) communication training for decision support and (3) Ottawa Decision Guide training (one session reviewing the four steps of the guide and how they can be used with patients). Patients were only informed and did not receive an intervention. This intervention was conducted on the oncologists. Family caregivers were paired with a trained palliative care coach who scheduled and facilitated a series of one to five weekly phone sessions lasting 20 to 30 min. Participation data: Regarding caregiver distress and depressive symptoms, results suggest that the most beneficial components were training in communication for decision support (d = −0.49–0.25). However, for caregiver anxiety, the only beneficial component was training in communication for decision support (d = −0.26). Regarding perceived positive decision influence by the patient, the component resulting in the greatest effect was communication training for decision support (d = 0.62); however, the psychoeducation component for effective decision support also resulted in a relevant albeit lower magnitude effect (d = 0.33). |
69% |
Fritz et al. [22], the Netherlands | Qualitative study utilising focus groups with healthcare professionals and semi‐structured interviews with patients and their representatives. | Develop an ACP programme specifically for glioblastoma patients. Evaluated topics that are relevant for patients and their proxies and facilitators and barriers to participating in an ACP programme. | 10 healthcare professionals (two neuro‐oncologists, one neuro‐oncology nurse, one oncology nurse, two neuro‐oncology radiation therapy oncologists, two palliative care nurses, one general practitioner, one home care nurse, one end‐of‐life researcher). 13 patients with glioblastoma and their family members, and six family members of deceased patients. |
IMPLEMENTATION PROGRAMMES Location: Not reported Participants: Medical team with patients and family members Timing: After diagnosis or chemotherapy Decision type: Treatment: ACP |
Information modality: Not reported. Measurement instrument: Not reported. PtDA: Not applicable. Outcome: Topics addressed in both the focus group and interviews include (1) current situation, (2) concerns and fears, (3) treatment options and (4) preferred location for care and death. Participation data: Not applicable. |
80% |
Hoerger et al. [23], USA | RCT, protocol | Help doctors, patients with advanced cancer and caregivers communicate more effectively about topics that may influence decision making. | 40 oncologists and 400 patients with advanced cancer, each accompanied by a family member. |
IMPLEMENTATION PROGRAMMES Location: Not reported Participants: Oncologists with patients and family members Timing: In patients with incurable cancer before a critical situation, anticipating informational needs and strengthening the physician–patient relationship Decision type: Treatment choice, symptom management, transition to palliative care |
Information modality: VOICE (Values and Options in Cancer Care): Oncologist training through DVD + guidelines. Patient training through a booklet. Measurement instruments: APPC, PTCC, CPS, SPI and Actual Decision Role. PtDA: DVD + Communication Guide ‘reminder’ card for oncologists. QPL, My Cancer Care booklet for patients and family members. Outcome: VOICE: Phase 1 involves preparing oncologists in SDM (DVD of 15 min, communication guide ‘reminder’ card encouraging discussions on topics such as prognosis and symptoms found in the QPL, role‐playing exercise). Patients and caregivers receive training and intervention, and results are assessed (1 h) after completing a survey (during training, they fill out a QPL organised by the My Cancer Care booklet). Participation data: Not applicable. |
76.9% |
Korfage et al. [24], USA | ACTION‐multicentre RCT | evaluate the effects of a complex ACP intervention on the quality of life, operationalised as emotional functioning and symptoms of patients with advanced lung or colorectal cancer. Coping, patient satisfaction, SDM, patient involvement in decision making, AD inclusion in hospital files and use of hospital care. | 1117 patients with lung or colorectal cancer, caregivers and 39 healthcare professionals (especially nurses). |
IMPLEMENTATION PROGRAMMES Location: Hospital or at home Timing: Not reported Participants: Nurses trained in ACTION RC with patients and family members Decision type: Treatment, CPR, future care goals |
Information modality: Informational brochures ‐Information on CPR, artificial ventilation and artificial feeding‐. Measurement instruments: Satisfaction with care (EORTC IN‐PATSAT), satisfaction with the intervention (9 items created by the study), SDM; APECC. PtDA: Informational brochures. Outcome: ACTION RC Programme ‐ SDM: (1) Facilitated structured SDM conversations, (2) Preference form: My preference form, (3) informational brochures. Participation data: No differences were observed in coping, satisfaction with care, patient involvement in decision‐making or shared decision‐making. The intervention group more frequently utilised specialised palliative care. |
76,9% |
Michael et al. [25], Australia | RCT, protocol | Evaluate the potential utility of a video decision support tool (VDST) that models value‐based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared‐decisions when completing ACP's. | 86 patients with incurable cancer and 112 family members. |
IMPLEMENTATION PROGRAMMES Location: Hospital Timing: Not reported Participants: Oncologist with patients and family members Decision type: Pharmacological treatment and its effects on end‐of‐life quality of life |
Information modality: Vignettes presented to patients and caregivers in interviews and focus groups to gather perspectives on SDM. Measurement instruments: Attitudes towards SDM; questionnaire measured on a 10‐point Likert scale. Decision‐making congruence: CCAT‐P and CCAT‐F. Decision‐making readiness: Decision‐making preparedness scale. PtDA: VSDT. Outcome: Vignettes facilitate communication between patients and caregivers. Participation data: Not applicable. |
61.5% |
Rietjens et al. [26], the Netherlands | Multicentre‐cluster‐RCT, protocol | To evaluate the effect of the ACP RC programme on patients' quality of life and symptoms, to what extent care is received according to patients’ preferences, evaluation of the quality of the decision‐making process, how they cope with their illness, patient satisfaction, quality of end‐of‐life care and cost‐effectiveness | 1360 patients with advanced lung cancer (n = 680) or colorectal cancer (n = 680). |
IMPLEMENTATION PROGRAMMES Location: Hospital Timing: Not reported Participants: Nurses with the patient and family members Decision type: Pharmacological treatment and care in critical situations, such as cardio‐pulmonary resuscitation |
Information modality: ACTION: An interview is conducted (45–60 min), one or two sessions per patient. Subsequently: (1) My preference form (questionnaire on quality of life, decision‐making process, coping and care satisfaction), (2) Medical record review, (3) Study of recorded ACP sessions. Measurement instrument: Not reported PtDA: Not applicable Outcomes: Nurses are trained in the ACTION programme for SDM and then they implement it with patients. The patient and personal representative will engage in a facilitated SDM conversation following the ACTION programme. Nurses will assist the patient in documenting their preferences, including appointing a personal representative. Participation data: Not applicable. |
76,9% |
Tang et al. [27], Taiwan | RCT | Examine an interactive ACP intervention tailored to participants' readiness to engage in ACP while monitoring/ensuring high treatment fidelity. | 430 patients with terminal cancer. |
IMPLEMENTATION PROGRAMMES Location: Not reported Timing: Not reported Participants: Not reported Decision type: Choosing between LST and improving QoL |
Information modality: During an interview, participants are trained and provided with videos and informational pamphlets. Measurement instruments: Preference for LST: adapted interview protocol. QoL: 13‐item MQoL. Benefits and hazards of treatment. PtDA: Pamphlets and educational video aid. Outcome: The five components of the ACP intervention: (1) participant assessments, (2) interventions to engage in ACP, (3) discussions on end‐of‐life care between physician and patient, (4) pamphlet and educational video aid to facilitate understanding of ACP and LST at end of life, (5) psychological support. Participation data: The ACP intervention did not facilitate concordance between preferred and received LST, nor did it impact the quality of life during the dying process. |
84.6% |
Tricou et al. [28], France | Cross‐sectional study | Describe the decision‐making process and the DCPs of patients with advanced cancer receiving palliative care | 200 patients with advanced cancer referred to palliative care. |
IMPLEMENTATION PROGRAMMES Location: Not reported Timing: Not reported Participants: Oncologists with their patients Decision type: Not reported |
Information modality: Four questionnaires (1) Demographic characteristics, (2) Preferences (passive, active or shared decision‐making), (3) Patient satisfaction with decisions and care, (4) Patient's level of understanding of their illness, treatment and prognosis. Measurement instruments: Control preference scale (Degner and Sloan), Decision satisfaction scale and level of understanding of their disease, treatment and prognosis. PtDA: Not applicable Outcome: Not applicable; there is no intervention. The study assesses the SDM process through questionnaires. Participation data: (1) Age, where younger age is associated with more active SDM (p = 0.003), (2) Education, with higher education associated with more active or SDM (p < 0.001), (3) Employment status, where working patients have more active or SDM (p = 0.046). |
50% |
Abbreviations: ACP, advanced care planning; AD, advance directrices; APECC, assessment of patients' experience of cancer care; APPC, The Active Patient Participation Coding; CASCADE, CAre Supporters Coached to be Adept DEcision Partners; CHOICE, Choosing Treatment Together in Cancer at End of Life; CPR, cardio‐pulmonar resuscitation; CPS, control preferences scale; DCP, decision control preference; EORTC IN‐PATSAT, European Organisation for Research and Treatment of Cancer; ICU, intensive care unit; LST, life‐sustaining treatment; MQoL, McGill QoL Questionnaire; OPTION 12, Observing Patient Involvement scale; PC, palliative care; PCA, patient communication aid; PtDAs, decision aids; POLST, Physician Orders for Life‐Sustaining Treatment; PRT, palliative radiation therapy; PTCC, The Prognostic and Treatment Choices; QoL, quality of life; QPL, Question Prompt List; RC, respecting choices; RCT, random clinical trial; SDM, shared decision‐making; SPIs, standardised patients instructors; VSDT, video decision support tool.