Implementation of Telemedicine in Palliative Care in the Outpatient Sector of North Rhine-Westphalia (IMPULS-NRW)

Symptom Burden (MIDOS-2)

时间窗: Baseline (at enrollment) and then weekly until the palliative condition does not allow for the patient to provide this information anymore, until a patient's death or withdrawal from the study; overall study duration from November 2025 to May 2027.

Patient-reported assessment of symptom intensity (pain, dyspnea, fatigue, and psychological distress) using the Minimal Documentation System 2 (MIDOS-2).

Depressive Symptoms (PHQ-8)

时间窗: At baseline and after 3 months or upon clinical change; overall study duration from November 2025 to May 2027.

Self-reported depressive symptoms measured with the Patient Health Questionnaire-8.

Anxiety Symptoms (GAD-7)

时间窗: At baseline and after 3 months or upon clinical change; overall study duration from November 2025 to May 2027.

Self-reported anxiety symptoms assessed using the Generalized Anxiety Disorder Scale-7.

Health-Related Quality of Life (EQ-5D-3L)

时间窗: Baseline (at enrollment) and then monthly until the palliative condition does not allow for the patient to provide this information anymore, until a patient's death or withdrawal from the study; overall study duration from November 2025 to May 2027.

Health-related quality of life assessed using the EuroQol EQ-5D-3L questionnaire that comprises an index score and a visual analogue scale.

Patient Satisfaction (ZUF-8)

时间窗: After 3 months of use or at end of participation; overall study duration from November 2025 to May 2027.

Satisfaction with care and usability of the telemedicine intervention, assessed with the ZUF-8 questionnaire.

Functional Status (Palliative Performance Scale, PPS)

时间窗: Weekly until the palliative condition does not allow for the patient to provide this information anymore, until a patient's death or withdrawal from the study; overall study duration from November 2025 to May 2027.

Clinician-rated functional status including mobility, self-care, and intake using the Palliative Performance Scale.

Psychological Well-being (WHO-5)

时间窗: Baseline and after 3 months or upon clinical change over the whole study duration from November 2025 to May 2027.

Subjective well-being measured using the WHO-5 Well-Being Index.

Functional Status (ECOG Performance Status)

时间窗: Regularly throughout the observation period during the whole study duration from November 2025 to May 2027.

Clinician-rated physical functioning using the ECOG Performance Status scale.

Prognostic Assessment (Palliative Prognostic Index, PPI)

时间窗: At baseline and upon major clinical change during the whole study duration from November 2025 to May 2027.

Prognosis estimation combining clinical parameters using the Palliative Prognostic Index (PPI).

Caregiver Psychosocial Distress (SCARED)

时间窗: Baseline and weekly during caregiving period during the whole study duration from November 2025 to May 2027.

Caregiver emotional distress measured with the Screen for Anxiety Related Emotional Disorders (SCARED).

Caregiver Burden (Zarit Burden Interview, ZBI-7)

时间窗: Baseline and weekly during caregiving period during the whole study duration from November 2025 to May 2027.

Subjective caregiver burden assessed with the 7-item Zarit Burden Interview short form (ZBI-7).

Perceived Social Support (Single-Item Measure)

时间窗: Once at baseline and, if applicable, during follow-up until the palliative condition does not allow for the patient to provide this information anymore, until a patient's death or withdrawal from the study; overall study duration: Nov 2025 to May 2027.

Exploratory non-validated item assessing perceived social support among caregivers.

Family Satisfaction with Care (FAMCARE-2)

时间窗: Approximately 2 months after patient death; overall study duration from November 2025 to May 2027.

Satisfaction of family members with care and communication using the FAMCARE-2 short form.

Professional Acceptance and Usability (TUQ)

时间窗: After completion of the telemedicine use phase; overall study duration from November 2025 to May 2027.

Perceived usability and acceptance of telehealth among professionals, measured with the Telehealth Usability Questionnaire (TUQ).

System Usability (SUS)

时间窗: After completion of the telemedicine use phase; overall study duration from November 2025 to May 2027.

Perceived usability and functionality of the telemedicine platform using the System Usability Scale (SUS).

Phase of Illness (PCOC)

时间窗: At baseline and at each clinical review or when a change in the patient's clinical condition occurs. This will be proceeded until the patient's death or withdrawal from the study; overall study duration from November 2025 to May 2027.

Clinical categorization of the patient's current phase of illness according to the Palliative Care Outcomes Collaboration (PCOC) definitions: stable, unstable, deteriorating, terminal, and bereavement. The phase reflects the clinical status and care needs and is used to monitor transitions across palliative care trajectories.

Spiritual Well-Being (FACIT-Sp-12)

时间窗: At baseline and after 3 months or at end of participation overall study duration from November 2025 to May 2027.

Spiritual well-being assessed with the Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being Scale (FACIT-Sp-12). The instrument measures meaning, peace, and faith as components of quality of life in patients with chronic or life-limiting illness.