Value-Based Outcomes in Critical Care Recovery: The Voice of Relatives

In recent years, value-based healthcare has been endorsed by policymakers and clinical practice initiatives. Consequently, there is a need to engage patients and their relatives in identifying value and working jointly with professionals in new ways of delivering high-quality care. In this article, we present which value-based outcomes, here stated as reported needs and preferences of critical care survivors' relatives, were voiced in developing a digital application for ICU recovery pathways.

Introduction

The model of value-based healthcare emphasises a shift from provider-centred norms towards a holistic and user-centred approach, seeking to enhance quality-of-care while ensuring the equitable and sustainable costs of healthcare usage (Hurst et al. 2019; Porter 2010). Although a standardised definition of value-based healthcare is missing (Schapira et al. 2020; van Staalduinen et al. 2022), a highlighted element is stressing the experiences of healthcare users including their values in life (van der Voorden et al. 2023; Van Engen et al. 2022). This means addressing what matters most to the patient and moving the focus from healthcare volume to value. Therefore, intensive care units (ICUs) are increasingly striving to provide cost-effective and value-based support for survivors and their relatives (Ostermann and Vincent 2023).

Implications of Value-Based Healthcare in ICU Context

To establish patient value above the optimal quality of ICU care, a clear insight is needed into their priorities and preferences in essential matters. Measuring patient/person-reported outcomes (PROs) and patient/person-reported experiences (PREs) intends to prioritise and standardise meaningful resultants for the target group of stakeholders (Kingsley and Patel 2017; Kynoch et al. 2021). A previous study has shown that these outcome preferences are increasingly used in the consulting room while discussing treatment plans (van der Voorden et al. 2023). However, in the ICU context, measuring standardised PROs among ICU survivors specifically is limited and not covering all aspects of relevant sequala in recovering from a critical illness (Kerckhoffs et al. 2019; Robinson et al. 2017).

With respect to value-based healthcare, developing initiatives should embrace patient participation at all levels, from low engagement, such as completing questionnaires, to high engagement, such as cocreation and an advisory role in new projects (van der Voorden et al. 2023). Active patient participation can be a valuable resource for interaction when developing interventions within healthcare quality improvement efforts (Bergerum et al. 2019). In the ICU, including relatives as a proxy for patient participation should be a high priority. Both patient and relative values must be addressed in all development processes aiming for the improvement of quality ICU care.

Clinical Value-Based Healthcare Application in ICU Recovery Pathways

Being hospitalised in an ICU and surviving a critical illness significantly impacts both short- and long-term quality of life for patients and their relatives (Goldfarb et al. 2017; Rousseau et al. 2021). Consequently, an evolving domain in the ICU context is providing structured follow-up services to meet patient needs, minimise sequelae of post-ICU symptoms, and improve health-related outcomes (Jensen et al. 2015; Renner et al. 2023). However, its implementation in clinical practice can be unavailable, costly, and inconclusive in ensuring improved health-related outcomes among the target group (Colbenson et al. 2019; Zheng et al. 2023). ICU follow-up services should, therefore, advance their care by offering easily accessible digital health programmes (Berger et al. 2025; Dimopoulos et al. 2024; Rose and Cox 2023). These programmes might be beneficial in self-monitoring and self-management in the recovery of patients who experienced a critical illness. However, it remains unclear whether digital solutions could offer preferred methods to improve the quality of life for patients and their relatives after ICU discharge. It is essential to know which advancements would be most valuable for these stakeholders. Therefore, a participatory approach, alongside using PROs and PREs, could drive valuable innovations in digital ICU recovery pathways.

Empirical Case Study

Needs And Priorities in Digital Recovery Pathways From the Perspectives of ICU Patients’ Relatives

We aimed to develop a digital application for ICU recovery pathways of patients and relatives. The Centre for eHealth Research and Disease Management (CeHRes)-roadmap was used as an evidence-based method to create value-adding in sustainable e-health technologies (Kip et al. 2025; Van Velsen et al. 2013). Following this roadmap (Figure 1), a participatory approach guided integrative methods, including all stakeholders (ICU patients, relatives and healthcare professionals) from the start of the design thinking through pilot testing until the implementation of the digital intervention (van Mol et al. 2023). In a previous quantitative study, ICU survivors prioritised the provision of digital information, animations, and listing relevant professionals who may support them during their recovery trajectory (Zacharelou et al. 2024). For relatives of ICU survivors, the highest priority reported was receiving help in managing their emotional distress. To fully understand value-based priorities and explore common ground for building the digital recovery programme, additional qualitative inquiries have been performed, completing the contextual inquiry and value specification of the CeHRes roadmap. Here, the voices of relatives will be reported. 

The focus in this part of the larger research project are the survivors’ relatives, emphasising that their specific situation and needs are inseparable from ICU survivors’ recovery (Onrust et al. 2023). Though, relatives’ experiences and needs during the timeline of ICU admission and the recovery phase of their loved ones differ from their own, subsequently affecting their personal and dyadic coping processes (Fumis et al. 2015). For example, coping with the emotional impact of ICU admission starts for survivors once they start recovering, stated as 'returning to normal', while for family members, the coping process ends at the point ‘if the patient is well, I am well’ (Onrust et al. 2023). Underlying the development of a digital ICU recovery pathway, a gap exists in priorities from the relatives’ perspectives. Therefore, which value-based outcomes  ̶  stated as common needs and preferences among critical care survivors’ relatives  ̶   were voiced to develop a digital application for ICU recovery pathways?

A qualitative design with focus group interviews was conducted between February and July 2023 with family members recruited from one university hospital and three general hospitals in the Netherlands. A priori, a semi-structured interview topic guide was developed to guide the interviews. All interviews were audio-recorded and transcribed verbatim. Data were analysed using thematic analysis.

Thematic Analysis

Eighteen participants were included; most were women (n=14, 78%), and most were legal partners (n=16, 89%) of an ICU survivor (Table 1). The average time from ICU admission to the participants' engagement in the interview was 340 (±118) days. The duration of the interviews ranged from 76 to 84 minutes. Three main themes were identified representing the voices of ICU survivors' relatives: 1) long-term outcomes, 2) facilitating recovery, and 3) needs in digital applications (Figure 2).

Theme 1, long-term outcomes, spanned various aspects of physical and psychological symptoms, including exhaustion, back and extremity pain, anxiety, stress, insomnia, powerlessness and worrying. These issues were narrated extensively, showing the impact on their daily lives. Like one relative voiced: "You hear those beeps or the phone ringing, and you're immediately back feeling all stress again. You want to have peace and confidence, but that's just completely gone. Such a situation is traumatising, and this has an impact also on your own physical recovery”.

Theme 2, facilitating recovery, was a prioritised need for emotional well-being and social support. The relatives experienced and managed distress differently. For example, some reported the period after ICU discharge as arduous and socially restrictive due to concerns and fear of leaving their loved one alone, while others mentioned the need to organise social support around their loved one, thus getting their own life back. Relatives shared several strategies that helped them cope with their experience, including talking about their ICU experience, utilising an ICU diary and photographs, visiting a general practitioner, and attending an ICU follow-up clinic. Quoting a relative: “I was approached by a social worker. We had a follow-up conversation, which I thought was fantastic”.

Theme 3, needs in digital applications, focused on digital innovation in ICU recovery. Although participants found it challenging to brainstorm new ideas, they conveyed a positive attitude towards digital solutions. Like one relative voiced: “I don't know if you can make a personalised portal where the ICU nurse can write something about the patient. Then you have a kind of diary from the hospital. Or tell your story online and be able to listen to fellow sufferers; that would have helped me a bit”. Providing personalised information through a web portal and incorporating peer support, such as using storytelling in vlogs, were suggested as potential strategies to enhance support for relatives following ICU discharge.

Discussion

The findings from this study do resonate with recent studies regarding relatives’ needs and health-related outcomes (Putowski et al. 2023; Shirasaki et al. 2024). Patient-reported experiences, measured as value-based outcomes among ICU survivors' relatives, were explored from their preferences, needs and expectations regarding the development and use of a digital ICU follow-up service. General reporting included preferences for personalised online information delivery, the possibility of digital consults with healthcare professionals, and digital access to peer support. The findings of our study also provide new insights for applying a value-based healthcare approach in ICU clinical practice and follow-up care in the trajectory of recovery of patients and their relatives. The implications of the findings of our study will be discussed within the three core elements of value-based healthcare: enabling engagement, the need for a core outcome set, and organisational change.

Enabling engagement

The importance of involving the perspectives of the target group in a developing process of new initiatives is indisputable. Active involvement is key to understanding users' point of view and to prevent discrepancies between their experiences and the implementation of interventions or end products (Fernández-Salido et al. 2024). The involvement of relatives of ICU survivors alongside the multidisciplinary ICU team is, therefore, essential to understand what is most important for them. Considering the ICU relatives as members of the project team, and having their active input during the design phase, is crucial to ensure that care is offered in a personalised way (Daniels et al. 2022). Therefore, family members' experiences and outcomes are relevant to select and apply in implementing novel interventions with the intention to change clinical practices. Value-based healthcare ensures the vital role of patients and their representatives in the viability of health services (Fernández-Salido et al. 2024). This paradigm of healthcare comprises a holistic approach emphasising the value from the users' perspective.

Need for a core outcome set

A key element of value-based healthcare is the focus on PROs and PREs that matter most for all stakeholders and make a difference to patients, the public, and society, using the best available evidence (Hurst et al. 2019). Although not yet implemented in a broad international context, a core outcome set has been developed recently for adult ICU patients (Kjær et al. 2025). Such a core outcome set for relatives is still unaddressed and needs to be developed as well. Therefore, we make a strong call for action to design and report a core outcome set related to long-term outcomes for ICU survivors’ relatives.

Organisational change

The core principles of value-based healthcare can guide organisational changes in a transition toward a human-centred approach (Rodriguez-Ruiz et al. 2025). Listening to and incorporating the ideas voiced by ICU patients and their relatives may be challenging, for example, encountering time constraints, paternalistic attitudes of ICU professionals, and lacking hospital structures embracing such an approach. However, fostering human-centredness in the ICU can start with a small movement in a change of family policy. Managers can stimulate an open-door policy, offer the use of ICU diaries, and make efforts to implement a bundle of ICU recovery interventions, including digital applications. Value-based healthcare might work as a trigger for initiating improvements related to such organisational changes and provide a fundament to build inclusive improvements (Nilsson et al. 2017).

Conclusion

The development of a digital platform considering the opinions and priorities of relatives of ICU survivors can contribute to a personalised recovery trajectory promoting self-management while including digital elements addressing relevant ICU follow-up services. The stakeholders’ perspectives, including ICU survivors, relatives, ICU professionals and researchers, must be integrated to gain a balanced and illustrative fundament to develop and monitor digital innovation in ICU practice. The core principles of value-based healthcare can guide these organisational changes in a transition toward a human-centred approach.

Conflict of Interest

None.