Developing a symptom distress scale for terminal malignant disease

Area of Science:

• Palliative Care
• Oncology
• Symptom Management

Background:

• Symptom control is crucial in palliative care, but symptom distress is highly individual.
• Existing symptom distress measurement tools lack validation in terminally ill cancer patients.
• Understanding the unique symptom experience of dying cancer patients is essential.

Purpose of the Study:

• To identify distressing symptoms experienced by dying cancer patients.
• To develop and validate a new scale for measuring physical symptom distress in this population.
• To adapt existing measurement tools for improved applicability in terminal care.

Main Methods:

• An exploratory, descriptive, cross-sectional survey was conducted.
• Data collected via semi-structured interviews with 49 dying cancer patients, 60 professional carers, and 30 bereaved relatives.
• Symptom data were compared with literature and existing scales for validation.

Main Results:

• A wide diversity in the symptom experience among dying cancer patients was identified.
• A pool of distressing symptoms was generated from patient, carer, and relative data.
• An adaptation of the physical sub-scale of the Rotterdam Symptom Checklist is proposed.

Conclusions:

• The study highlights the need for validated symptom distress measures in palliative cancer care.
• The proposed scale aims to better capture the physical symptom experience of the terminally ill.
• Further validation of the adapted scale is recommended for clinical use.