# Distinct experiences and care needs of advanced cancer patients with good ECOG performance status: a qualitative phenomenological study

## TL;DR

This study explores the unique experiences and care needs of advanced cancer patients who are still physically active, highlighting their independence, financial concerns, and reluctance to discuss death.

## Contribution

The paper reveals distinct care needs of advanced cancer patients with good ECOG performance status, which are different from those who are closer to death.

## Key findings

- Patients with good ECOG experience mild symptoms and prioritize cancer suppression over symptom management.
- Financial concerns significantly impact their care decisions and independence.
- Many patients use complementary and alternative medicine and religious coping, but avoid discussions about death.

## Abstract

Advanced cancer patients with good Eastern Cooperative Oncology Group (ECOG) performance status (score 0–1) are underrepresented in current qualitative reports compared with their dying counterparts.

To explore the experiences and care needs of advanced cancer patients with good ECOG.

A qualitative phenomenological approach using semi-structured interview was employed. Data was analyzed using the Colaizzi’s method.

Purposive sample of terminal solid cancer patients on palliative care aged 18–70 years with a 0–1 ECOG score were recruited from a tertiary general hospital.

Sixteen participants were interviewed. Seven themes were generated from the transcripts, including experiencing no or mild symptoms; independence in self-care, decision-making, and financial capacity; prioritization of cancer growth suppression over symptom management; financial concerns; hope for prognosis and life; reluctance to discuss death and after-death arrangements; and use of complementary and alternative medicine (CAM) and religious coping.

Advanced cancer patients with good ECOG have distinct experiences and care needs from their dying counterparts. They tend to experience no or mild symptoms, demonstrate a strong sense of independence, and prioritize cancer suppression over symptom management. Financial concerns were common and impact their care-related decision-making. Though being hopeful for their prognosis and life, many are reluctant to discuss death and after-death arrangements. Many Chinese patients use herbal medicine as a CAM modality but need improved awareness of and accessibility to treatment options. Healthcare professionals and policy-makers should recognize their unique experiences and needs when tailoring care strategies and policies.

The online version contains supplementary material available at 10.1186/s12904-024-01425-3.

What is already known about the topic?

• Even in their advanced stage, cancer patients with good ECOG performance status are capable of self-care and less reliant on care provided by other.

• Existing qualitative research mainly focuses on advanced cancer patients with poor ECOG, emphasizing pain management, emotional distress, and palliative care.

What this paper adds?

• Our findings reveal distinct experiences and care needs of advanced cancer patients with good ECOG performance status from their dying counterparts.

Implications for practice, theory or policy.

• Healthcare professionals should recognize and address the patient group’s distinct needs.

• Future research should further investigate their symptom trajectory, influencing factors, and care needs to fill the gap in their cancer journey.

• Policy-makers should develop tailored policies that consider good ECOG performance status.

The online version contains supplementary material available at 10.1186/s12904-024-01425-3.