Observational studyBMC palliative care2026
Understanding symptom occurrence and treatment in the palliative phase for people with intellectual disabilities: a protocol for a mixed-methods study.
Observational study in BMC palliative care, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
0 citing papers in PubMed.
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Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDespite advances in palliative care, people with intellectual disabilities (ID) still face major barriers in accessing timely and appropriate care. They often experience complex symptoms that may be expressed in atypical ways, in combination with multimorbidity and communication challenges. These factors complicate both symptom recognition and treatment. There is limited knowledge on how symptoms evolve and are managed in people with ID during the palliative phases. Better understanding of symptom occurrence and treatment responses can support tailored care. AIM/RESEARCH QUESTION OR HYPOTHESIS: To improve palliative care for people with ID by gaining insight into the occurrence, course, and treatment of symptoms during the palliative phases.
methodsA descriptive observational study using a mixed-methods approach will be conducted in three Dutch long-term care organisations. Repeated measurements using the Utrecht Symptom Diary adapted for caregivers (USD-z) will be used to assess symptom severity. Treatment strategies (pharmacological and non-pharmacological) will be documented. Additionally, interviews with care providers will explore the reasoning behind treatment decisions. A preceding pilot study confirmed the feasibility and acceptability of the study procedures. OUTCOME: The study will provide insight into symptom patterns, treatment approaches, and caregiver-perceived treatment effects. It will also explore how and when palliative sedation is applied in response to refractory symptoms in the terminal phase. The integration of quantitative and qualitative data is expected to yield practice-based knowledge directly relevant to daily care. EXPECTED IMPACT: The findings will contribute to improving care (guidelines) and clinical decision-making for people with ID in palliative care, supporting more effective symptom management. Also, this protocol may offer valuable input for future research involving people with complex care needs.
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Registered trials
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