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Comprehensive Assessment of Rehabilitation Experience Using the SAFE Scale (CARE-SAFE)

2026年10月27日 更新者:Fondazione Don Carlo Gnocchi ETS

Comprehensive Assessment of Rehabilitation Experience Using the Social And Family Evaluation (SAFE) Scale

Patients with severe acquired brain injury (sABI) and disorders of consciousness (DoC) require intensive interdisciplinary rehabilitation involving healthcare professionals, patients, and family caregivers. Caregivers play a key role in supporting patients and ensuring continuity of care, yet they frequently experience high levels of psychological distress, anxiety, depression, caregiver burden, and reduced quality of life. Previous studies have highlighted the need for clearer communication and greater caregiver involvement throughout the rehabilitation process.

The Social and Family Evaluation (SAFE) scale was developed to actively involve caregivers in monitoring patients with DoC. Derived from the Coma Recovery Scale-Revised (CRS-R), SAFE is a simplified, caregiver-friendly observational tool that enables family members to report clinically relevant behaviors observed during daily interactions. Preliminary validation demonstrated excellent psychometric properties, including high internal consistency, excellent test-retest reliability, and good criterion validity compared with the CRS-R. However, its effectiveness has not yet been investigated in the subacute rehabilitation setting.

The primary aim of this study is to evaluate whether the use of the SAFE scale improves caregivers' illness perceptions. Secondary objectives are to assess its impact on caregiver satisfaction with rehabilitation, decisional conflict, anxiety, depression, prolonged grief, and caregiver burden.

This is a non-profit, prospective, multicenter, single-blind randomized controlled trial involving 68 caregiver-patient dyads recruited from three intensive neurorehabilitation units of the Don Carlo Gnocchi Foundation in Florence, Milan, and Sant'Angelo dei Lombardi (Italy). Adult caregivers of patients with DoC admitted within three months after brain injury will be randomly assigned (1:1) to either the SAFE intervention group or a standard-care control group. Randomization will be stratified according to caregiver relationship (parent vs. non-parent) and patient diagnosis (vegetative state/unresponsive wakefulness syndrome vs. other DoC).

At baseline (T0), caregivers will complete the Brief Illness Perception Questionnaire (BIPQ), Family Strain Questionnaire (FSQ), Prolonged Grief Disorder-12 (PG-12), Beck Depression Inventory-II (BDI-II), and State-Trait Anxiety Inventory (STAI-Y). Patients will be assessed using the Coma Recovery Scale-Revised (CRS-R) and the Level of Cognitive Functioning (LCF).

Caregivers allocated to the SAFE group will receive standardized training on the SAFE scale and complete it at 2 weeks (T1) and 6 weeks (T2), together with repeated BIPQ assessments. Control participants will receive routine clinical care and complete the BIPQ only. Both groups will receive the same psychoeducational booklet as standard care.

At the final follow-up (T3, 10 weeks after enrollment), caregivers will repeat all baseline assessments and additionally complete the Family Satisfaction in Intensive Care Unit (FS-ICU) and the Decisional Conflict Scale (DCS). Patients will undergo repeat CRS-R and LCF assessments together with the Glasgow Outcome Scale-Extended (GOSE).

The primary endpoint is the BIPQ Illness Coherence score at T2. The primary analysis will use ANCOVA adjusted for baseline values. Based on preliminary data, 68 caregivers will be enrolled to detect a clinically meaningful difference between groups while accounting for an expected 20% dropout rate. A blinded sample-size re-estimation will be performed after recruitment of the first 30 participants.

Secondary analyses will evaluate the effects of the SAFE intervention on caregiver burden, prolonged grief, anxiety, depression, family satisfaction, and decisional conflict using adjusted statistical models.

The study is considered low risk, as all procedures are consistent with routine clinical practice. If effective, the SAFE scale may enhance caregiver understanding of the patient's condition, improve communication with the rehabilitation team, promote shared decision-making, reduce psychological distress, and support a more family-centered approach to neurorehabilitation.

研究概览

详细说明

The diagnosis and monitoring of disorders of consciousness rely primarily on standardized behavioral assessment performed by trained clinicians. Although the Coma Recovery Scale-Revised (CRS-R) represents the current clinical reference standard, patient responsiveness may fluctuate considerably throughout the day, and clinically meaningful behaviors may occur outside scheduled assessments. Family caregivers, who spend prolonged periods with patients across different contexts, are uniquely positioned to observe subtle behavioral changes that might otherwise remain undocumented.

The Social and Family Evaluation (SAFE) scale was specifically developed to facilitate the structured collection of these caregiver observations using terminology and response options accessible to non-healthcare professionals. Rather than replacing clinician-administered assessments, SAFE is intended to complement routine neurological evaluation by promoting systematic communication between caregivers and the multidisciplinary rehabilitation team. Integrating caregiver observations into the rehabilitation pathway may improve the continuity of behavioral monitoring while fostering a shared understanding of the patient's clinical condition.

In addition to its potential diagnostic value, the structured use of SAFE may represent a communication intervention. By providing caregivers with a common framework for interpreting patient behaviors, the scale may facilitate discussions with healthcare professionals, improve understanding of the diagnostic process, and encourage more active participation in rehabilitation. These mechanisms are expected to influence caregivers' illness perceptions, reduce uncertainty surrounding the patient's condition, and strengthen therapeutic alliance with the rehabilitation team.

This study will also provide evidence regarding the feasibility of implementing SAFE within intensive neurorehabilitation units during the subacute phase following severe acquired brain injury. The findings will contribute to understanding whether a standardized caregiver-reported assessment can be integrated into routine clinical practice while supporting family-centered care and enhancing communication between families and healthcare professionals.

研究类型

介入性

注册 (估计的)

68

阶段

  • 不适用

联系人和位置

本节提供了进行研究的人员的详细联系信息,以及有关进行该研究的地点的信息。

学习联系方式

学习地点

参与标准

研究人员寻找符合特定描述的人,称为资格标准。这些标准的一些例子是一个人的一般健康状况或先前的治疗。

资格标准

适合学习的年龄

18年 及以上 (成人、年长者)

接受健康志愿者

不

有资格学习的性别

全部

描述

Caregiver Inclusion Criteria:

  • Age ≥18 years.
  • Being the primary informal caregiver (regularly spending time with the patient, being aware of the patient's clinical condition, and participating in meetings with the healthcare team).
  • Adequate understanding and ability to communicate in Italian.
  • Provision of written informed consent.

Caregiver Exclusion Criteria:

  • Previous psychiatric and/or neurological disorders.

Patient Inclusion Criteria:

  • Age ≥18 years.
  • Documented diagnosis of Disorders of Consciousness (DoC) assessed by the Coma Recovery Scale-Revised (CRS-R).
  • Time since the acute event <3 months.
  • Clinical stability of the patient.
  • Provision of written informed consent by the legal representative.

Patient Exclusion Criteria:

None.

学习计划

本节提供研究计划的详细信息,包括研究的设计方式和研究的衡量标准。

研究是如何设计的?

设计细节

  • 主要用途:支持治疗
  • 分配:随机化
  • 介入模型:并行分配
  • 屏蔽:三倍

武器和干预

参与者组/臂
干预/治疗
实验性的:SAFE Group

Participants allocated to the SAFE group will undergo an individual training session with the healthcare professionals involved in the study. During this session, the SAFE scale and its administration procedures will be explained in detail.

According to the procedures established for the SAFE scale, caregivers will complete the scale after a 2-week observation period of the patient's behaviours (T1). The SAFE scale will then be completed again by the caregiver 4 weeks after the first administration (corresponding to 6 weeks after the initial training session performed at baseline, T2).

Caregivers will be asked to complete also the following questionnaire:

Brief Illness Perception Questionnaire (BIPQ; Broadbent et al., 2006)

The intervention will consist of caregiver training and completion of the SAFE scale (Magnani et al., 2025). The SAFE is an observational tool developed to allow caregivers of patients with Disorders of Consciousness (DoC) to systematically report cognitively mediated behaviours based on daily interactions with the patient over the previous two weeks. Derived from the Coma Recovery Scale-Revised (CRS-R; Giacino et al., 2020), the SAFE includes simplified items designed for non-professional users. Preliminary results have shown good reliability, internal consistency, and correlation with the CRS-R. Following a standardized explanation provided by trained clinicians, caregivers will complete the scale by reporting behaviours observed during the previous 15 days. For each item, caregivers will answer "Yes" or "No" regarding the presence of a specific voluntary/non-reflexive behaviour associated with sensory or cognitive domains.

其他名称:
  • scale administration
有源比较器:No SAFE Group

Participants allocated to the NO-SAFE group will receive the standard clinical care provided by the rehabilitation unit. They will receive the Fondazione Don Gnocchi educational booklet "Il paziente con GCA: guida per le famiglie" as the minimum psychoeducational intervention.

Two weeks after enrolment and delivery of the educational booklet, caregivers will be asked to complete the following questionnaire:

Brief Illness Perception Questionnaire (BIPQ; Broadbent et al., 2006).

Caregivers allocated to the NO-SAFE group will receive the standard clinical care provided by the rehabilitation unit. They will receive the Fondazione Don Gnocchi educational booklet "Il paziente con GCA: guida per le famiglie" as the minimum psychoeducational intervention and will participate in routine clinical meetings with the physicians of the rehabilitation unit.

研究衡量的是什么?

主要结果指标

结果测量
措施说明
大体时间
Caregivers' Perceived Understanding of Their Relative's Clinical Condition
大体时间:6 weeks from the enrollment

Measure: The primary endpoint is the score on the Illness Coherence item of the Brief Illness Perception Questionnaire (BIPQ; Broadbent et al., 2006) at T2. This item assesses caregivers' perceived understanding of their relative's clinical condition in the context of Disorders of Consciousness (DoC). The item is scored on a scale from 0 to 10, with higher scores indicating greater perceived understanding of the clinical condition (better outcome).

6 weeks from the enrollment

次要结果测量

结果测量
措施说明
大体时间
Family Satisfaction with Care
大体时间:10 weeks from the enrollment (T3)

Measure: Family Satisfaction in the Intensive Care Unit (FS-ICU; Heyland & Tranmer, 2001; Italian version: Pagnamenta et al., 2016; Danielis et al., 2023).

Family satisfaction with the patient's care pathway will be assessed using the Family Satisfaction in the Intensive Care Unit (FS-ICU). The overall score ranges from 0 to 100, with higher scores indicating greater satisfaction with care (better outcome).

10 weeks from the enrollment (T3)
Decisional Conflict
大体时间:10 weeks after enrollment (T3)

Measure: Decisional Conflict Scale (DCS; O'Connor, 1993; Chiavari et al., 2013; Esposito et al., 2020).

Decisional conflict will be assessed using the Decisional Conflict Scale (DCS). The total score ranges from 0 to 100, with higher scores indicating greater decisional conflict and uncertainty (worse outcome).

10 weeks after enrollment (T3)
Depressive Symptoms
大体时间:From baseline (T0) to 10 weeks after enrollment (T3)

Measure: Beck Depression Inventory-II (BDI-II; Beck et al., 1996; Steer, 1999; Ghisi et al., 2006).

Depressive symptoms will be assessed using the Beck Depression Inventory-II (BDI-II), a 21-item self-report measure. Total scores range from 0 to 63, with higher scores indicating greater severity of depressive symptoms (worse outcome).

From baseline (T0) to 10 weeks after enrollment (T3)
State Anxiety
大体时间:From baseline (T0) to 10 weeks after enrollment (T3)

Measure: State-Trait Anxiety Inventory - Form Y, State Anxiety subscale (STAI-Y; Spielberger et al., 1997).

State anxiety will be assessed using the State Anxiety subscale of the State-Trait Anxiety Inventory - Form Y (STAI-Y). The subscale score ranges from 20 to 80, with higher scores indicating greater state anxiety (worse outcome).

From baseline (T0) to 10 weeks after enrollment (T3)
Trait Anxiety
大体时间:From baseline (T0) to 10 weeks after enrollment (T3)

Measure: State-Trait Anxiety Inventory - Form Y, Trait Anxiety subscale (STAI-Y; Spielberger et al., 1997).

Trait anxiety will be assessed using the Trait Anxiety subscale of the State-Trait Anxiety Inventory - Form Y (STAI-Y). The subscale score ranges from 20 to 80, with higher scores indicating greater trait anxiety (worse outcome).

From baseline (T0) to 10 weeks after enrollment (T3)
Prolonged Grief Symptoms
大体时间:From baseline (T0) to 10 weeks after enrollment (T3)

Measure: Prolonged Grief Disorder-12 (PG-12; Prigerson et al., 2009). Prolonged grief symptoms will be assessed using the Prolonged Grief Disorder-12 (PG-12). The PG-12 is a self-report measure assessing symptoms of prolonged grief. The total score ranges from 11 to 55, with higher scores indicating greater severity of prolonged grief symptoms (worse outcome).

From baseline (T0) to 10 weeks after enrollment (T3)
Caregiver Strain
大体时间:From baseline (T0) to 10 weeks after enrollment (T3)

Measure: Family Strain Questionnaire (FSQ; Vidotto et al., 2009). Caregiver strain will be assessed using the Family Strain Questionnaire (FSQ). The total score ranges from 0 to 30, with higher scores indicating greater caregiver strain and psychological burden (worse outcome).

From baseline (T0) to 10 weeks after enrollment (T3)

合作者和调查者

在这里您可以找到参与这项研究的人员和组织。

调查人员

  • 首席研究员:Bahia Hakiki、IRCCS Fondazione Don Gnocchi

研究记录日期

这些日期跟踪向 ClinicalTrials.gov 提交研究记录和摘要结果的进度。研究记录和报告的结果由国家医学图书馆 (NLM) 审查,以确保它们在发布到公共网站之前符合特定的质量控制标准。

研究主要日期

学习开始 (实际的)

2026年7月15日

初级完成 (估计的)

2029年6月15日

研究完成 (估计的)

2029年7月15日

研究注册日期

首次提交

2026年9月25日

首先提交符合 QC 标准的

2026年10月27日

首次发布 (实际的)

2026年11月3日

研究记录更新

最后更新发布 (实际的)

2026年11月3日

上次提交的符合 QC 标准的更新

2026年10月27日

最后验证

2026年8月1日

更多信息

与本研究相关的术语

药物和器械信息、研究文件

研究美国 FDA 监管的药品

不

研究美国 FDA 监管的设备产品

不

此信息直接从 clinicaltrials.gov 网站检索,没有任何更改。如果您有任何更改、删除或更新研究详细信息的请求,请联系 register@clinicaltrials.gov. clinicaltrials.gov 上实施更改,我们的网站上也会自动更新.

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