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Purpose <p>To understand the lived experience of patients with non-metastatic (NM-CRC) and metastatic colorectal cancer (M-CRC) by identifying the signs, symptoms, and impacts they face throughout the disease course and treatment. </p> Methods <p>An international, non-interventional, qualitative interview study was conducted in the US, UK, Germany, and Japan. Six clinicians specializing in CRC were interviewed to inform disease symptomatic features, management, and clinically relevant concepts. Subsequently, 40 adult patients with NM-CRC (<i>n</i> = 19) or M-CRC (<i>n</i> = 21) participated in individual, semi-structured online concept elicitation interviews. Interviews were audio-recorded, transcribed, translated if needed, de-identified, and analyzed thematically using qualitative software.</p> Results <p>Tiredness/fatigue, blood in stool, rectal bleeding, diarrhea, abdominal pain, abdominal cramping, constipation, and bloating were among the most frequently reported signs/symptoms of CRC. Many symptoms and impacts, including tiredness/fatigue, skin problems, nausea, hair loss, and numbness/tingling, were attributed to treatments like surgery, chemotherapy, and stoma presence. Daily life impacts included changes in physical abilities, social functioning, emotions, finances, and overall quality of life. A conceptual model of CRC signs/symptoms and impacts was developed based on clinician insights and refined based on patient interviews.</p> Conclusions <p>The study documented the disease and treatment experience of patients with CRC. Some differences were observed between the experiences of patients with M-CRC and NM-CRC; however, fatigue, bowel-related issues, and abdominal pain were consistently identified as prevalent and bothersome symptoms.</p> Implications for cancer survivors <p>Understanding the most bothersome CRC symptoms, impacts, and treatment side effects is essential for developing effective support programmes and potentially improving treatment approaches to enhance the quality of life for CRC survivors.</p>

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Understanding the lived experience of colorectal cancer: a qualitative study of patient and clinician perspectives

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年2月21日

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  • Barry D. Stein,
  • Lois Downes,
  • Nicole Sheahan,
  • Zorana Maravic,
  • Akihito Kawazoe,
  • Isabelle Guillemin,
  • Michael Leibfried,
  • Peter Trask

摘要

Purpose

To understand the lived experience of patients with non-metastatic (NM-CRC) and metastatic colorectal cancer (M-CRC) by identifying the signs, symptoms, and impacts they face throughout the disease course and treatment.

Methods

An international, non-interventional, qualitative interview study was conducted in the US, UK, Germany, and Japan. Six clinicians specializing in CRC were interviewed to inform disease symptomatic features, management, and clinically relevant concepts. Subsequently, 40 adult patients with NM-CRC (n = 19) or M-CRC (n = 21) participated in individual, semi-structured online concept elicitation interviews. Interviews were audio-recorded, transcribed, translated if needed, de-identified, and analyzed thematically using qualitative software.

Results

Tiredness/fatigue, blood in stool, rectal bleeding, diarrhea, abdominal pain, abdominal cramping, constipation, and bloating were among the most frequently reported signs/symptoms of CRC. Many symptoms and impacts, including tiredness/fatigue, skin problems, nausea, hair loss, and numbness/tingling, were attributed to treatments like surgery, chemotherapy, and stoma presence. Daily life impacts included changes in physical abilities, social functioning, emotions, finances, and overall quality of life. A conceptual model of CRC signs/symptoms and impacts was developed based on clinician insights and refined based on patient interviews.

Conclusions

The study documented the disease and treatment experience of patients with CRC. Some differences were observed between the experiences of patients with M-CRC and NM-CRC; however, fatigue, bowel-related issues, and abdominal pain were consistently identified as prevalent and bothersome symptoms.

Implications for cancer survivors

Understanding the most bothersome CRC symptoms, impacts, and treatment side effects is essential for developing effective support programmes and potentially improving treatment approaches to enhance the quality of life for CRC survivors.