When you get what you want, but not what you need: Understanding, validating and facilitating the use of the Utrecht Symptom Diary - 4 Dimensional in palliative care

Palliative care aims to address the multidimensional symptoms and needs of patients with life-limiting illnesses. This thesis focuses on enhancing palliative care through the validation and implementation of the Utrecht Symptom Diary–4 Dimensional (USD-4D), a patient-reported outcome measure (PROM) designed to monitor and discuss the physical, psychological, social, and spiritual dimensions of patient well-being.

Three objectives guided this research: (1) understanding social and spiritual needs and how these dimensions interact; (2) validating the USD-4D from patient and healthcare provider (HCP) perspectives; and (3) facilitating the use the USD-4D in clinical care.

Chapter 2 presents a mixed-methods review of 34 studies that revealed that patients often express intertwined social and spiritual needs—such as autonomy, meaning, connectedness, and coping with death—making strict distinctions unhelpful. A socio-spiritual approach is recommended, emphasizing comprehensive understanding over categorization. This supports training HCPs and fostering collaboration between social workers, spiritual caregivers, and clinicians.

Chapters 3 and 4 explored the USD-4D’s content and construct validity. Interviews with 12 patients confirmed that the diary’s items were understandable and relevant, reflecting key themes like letting go, resilience, and existential reflection. In a broader study involving 601 HCPs and 897 patients, the USD-4D showed strong content validity and captured both social and spiritual dimensions. Although some HCPs noted missing items, most rated the instrument as relevant and clear.

To ensure meaningful use in practice, Chapters 5 and 6 examined what both patients and HCPs need. Interviews with 25 patients highlighted the importance of feeling invited (but not obligated) to use the USD-4D, understanding its purpose, and experiencing a respectful, personalized approach from HCPs. Patients valued the tool most when they saw its results integrated into their care.

A mixed-methods study with 122 HCPs identified facilitators such as improved interdisciplinary communication and structured symptom discussion. However, barriers included time pressure, limited knowledge about social/spiritual care, and discomfort discussing existential themes. Tailored implementation strategies are needed to address these barriers across different settings.

The general discussion emphasizes that the USD-4D supports holistic, personalized care by combining structured assessment with patient-driven dialogue. Its use promotes shared decision-making and advanced care planning. Methodologically, this research was strengthened by stakeholder involvement, multidisciplinary analysis, and feedback loops. However, limitations included underrepresentation of lower educated patients and some professional groups.

In conclusion, the USD-4D is more than a measurement tool—it fosters compassionate, proactive care that honors the agency, dignity, and unique narratives of patients. Future research should aim to refine its integration into practice, ensure inclusivity, and explore its potential within digital health systems.