Narrative Medicine for Gastrointestinal Cancer

Overseen By Charlean Ketchens, RN

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: University of Southern California

Disqualifiers: Cognitive impairment, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 5

Duration: 6 weeks

10 Participants Needed

Trial Summary

Do I need to stop my current medications for this trial?

The trial does not specify whether you need to stop taking your current medications. However, since it involves narrative medicine and not a new drug, it's likely you can continue your current treatments.

What data supports the effectiveness of the treatment Narrative Medicine for gastrointestinal cancer?

Research shows that narrative medicine, which involves patients sharing their personal stories, can improve patient experience and satisfaction. For example, a study found that cancer patients who participated in a narrative program had higher satisfaction scores compared to those who did not participate. ^{1 2 3 4 5}

Is Narrative Medicine safe for humans?

There is no specific safety data available for Narrative Medicine or its related interventions like Reflective Writing or Close Reading in the context of gastrointestinal cancer or other conditions. However, these interventions generally involve storytelling and writing, which are non-invasive and typically considered safe. ^{6 7 8 9 10}

How is the treatment Narrative Medicine unique for gastrointestinal cancer?

Narrative Medicine is unique because it focuses on storytelling and listening to help patients and doctors understand the emotional and personal experiences of living with cancer, unlike traditional treatments that focus solely on medical interventions. ^{4 11 12 13 14}

What is the purpose of this trial?

This clinical trial assesses whether narrative medicine methods may improve the sense of well-being among gastrointestinal (GI) (digestive system) cancer patients. Narrative medicine is a clinical approach where providers can use a patient's own narrative (perspective) of their illness to promote healing and resilience. By applying narrative medicine's main tool, close reading, to clinical practice, clinicians learn to listen and attend to patients more deeply. This allows for freer communication and the creation of a healthcare encounter that centers on the psychological and emotional well being of the patient in addition to their medical conditions. Narrative medicine can include close reading, creative or reflective writing, and discussion. These methods may help patients with GI cancer to reflect on their life stories, both inside and outside of their illness experience, and help them gather skills to optimize their well-being.

Research Team

Eve L Makoff, MD

Principal Investigator

University of Southern California

Eligibility Criteria

This trial is for patients with gastrointestinal cancers. Participants should be interested in exploring narrative medicine, which involves discussion, interviews, and surveys to reflect on their life stories and illness experiences.

Inclusion Criteria

I can take care of myself but cannot do any physical work.

I can speak, read, and write in English well enough to fill out questionnaires.

I am currently receiving infusion treatments for gastrointestinal cancer.

Exclusion Criteria

I do not have any mental or cognitive issues that would prevent me from participating in the study.

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Treatment

Participants participate in narrative medicine sessions over 60 minutes once every 2 weeks for 3 sessions

6 weeks

3 visits (in-person)

Follow-up

Participants are monitored for changes in well-being scores and completion of narrative medicine sessions

3 months

2 visits (in-person)

Treatment Details

Interventions

• Narrative Medicine

Trial Overview The study tests if narrative medicine methods like close reading, creative writing, and discussions can improve well-being in GI cancer patients by enhancing communication between them and healthcare providers.

Participant Groups

Group I: Supportive Care (narrative medicine sessions) Experimental Treatment 3 Interventions

Patients participate in narrative medicine sessions over 60 minutes Q2W for 3 sessions.

Who Is Running the Clinical Trial?

University of Southern California

Lead Sponsor

Trials

956

Recruited

1,609,000+

National Cancer Institute (NCI)

Collaborator

Trials

14,080

Recruited

41,180,000+

Findings from Research

A nurse-led storytelling intervention significantly reduced anxiety levels in cancer patients, even as their disease progressed, suggesting a potential therapeutic benefit for mood management.

The study, involving 10 patients with various cancer diagnoses, indicates that storytelling could be a valuable tool for improving psychosocial well-being, although further research is needed due to the small sample size.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Storytelling intervention for patients with cancer: part 2--pilot testing. Crogan, NL., Evans, BC., Bendel, R.[2013]

A pilot study at the 'Regina Elena' National Cancer Institute involving seven patients and five healthcare professionals found that using digital narrative diaries significantly improved patients' self-expression, disease awareness, and sense of empowerment, with high satisfaction scores (4.8/5).

Healthcare professionals also reported enhanced communication and relationships with patients, indicating that integrating patients' narratives into their care can strengthen the therapeutic alliance and improve overall care pathways.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Narrative Medicine: A Digital Diary in the Management of Bone and Soft Tissue Sarcoma Patients. Preliminary Results of a Multidisciplinary Pilot Study. Cercato, MC., Vari, S., Maggi, G., et al.[2022]

The narrative path program at the IRCSS 'Regina Elena' National Cancer Institute, initiated in 2015, emphasizes the importance of storytelling in clinical practice to enhance understanding and communication between patients and healthcare providers.

A pilot study in 2017 demonstrated that integrating patient narratives with clinical data during chemotherapy is feasible and beneficial, but its success relies heavily on the involvement of the entire care team and effective health organization.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

[Narrative medicine in the oncological clinical practice: the path from a story-telling intervention to a narrative digital diary.] Cercato, MC.[2019]

The study involved 13 cancer patients (6 men and 7 women, aged 47 to 79) who shared their illness narratives, revealing that encounters with doctors significantly impacted their experiences throughout their cancer journey.

A strong doctor-patient relationship, characterized by continuity of care and effective communication, was crucial for patients, highlighting the need for physicians to provide empathetic support and adapt their communication to meet patients' needs.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Patients' illness narratives-From being healthy to living with incurable cancer: Encounters with doctors through the disease trajectory. Kvåle, K., Haugen, DF., Synnes, O.[2023]

The Life Story Narrative Program for outpatient oncology patients led to a significant improvement in patient experience scores, with 100% of participants rating their experience positively compared to 78.4% in the control group.

Despite a small sample size of 27 participants, the program demonstrated that engaging patients in sharing their life stories can enhance their overall satisfaction and well-being during cancer treatment, as indicated by a statistically significant difference in Press Ganey™ scores (mean score of 5.00 vs. 4.71).

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The Impact of a Narrative Medicine Life Story Pilot Program on Press Ganey™ Scores in an Outpatient Cancer Center. Raff, JP., Sege, J., Braiotta, R., et al.[2023]

An analysis of narratives from 48 breast cancer patients revealed significant differences between how patients describe adverse drug events (ADEs) and the terminology used on pharmaceutical package inserts, indicating a gap in effective communication.

The study suggests that creating an 'Adverse Drug Event Database' with patient narratives could provide valuable, relatable information to help patients better understand and cope with ADEs, which is currently lacking in standard drug information.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Utility of an adverse drug event database based on the narrative accounts of patients with breast cancer. Kikuchi, K., Miki, A., Satoh, H., et al.[2020]

A new assignment for specialist oncology nurses on adverse drug reaction (ADR) reporting resulted in 97% of the 33 reported ADRs being well documented, demonstrating the nurses' capability in pharmacovigilance.

The majority of nurses found the assignment useful and reported that it increased their awareness of medication safety, with 84% stating it changed how they managed ADRs in their practice.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The adverse drug reaction reporting assignment for specialist oncology nurses: a preliminary evaluation of quality, relevance and educational value in a prospective cohort study. Schutte, T., van Eekeren, R., Richir, M., et al.[2019]

In a study of 487 admissions involving 355 cancer patients treated with cisplatin, 53% experienced at least one adverse drug event, highlighting the prevalence of such reactions in this patient population.

Nausea was the most commonly documented adverse event, occurring in 43.9% of admissions, with an average duration of 5.2 days, indicating a significant side effect of cisplatin treatment.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Adverse-drug-event surveillance using narrative nursing records in electronic nursing records. Ahn, HJ., Park, HA.[2013]

A project engaging 36 internal medicine residents in incident reporting through anonymous storytelling led to the submission of 79 narratives about patient care issues, highlighting significant safety concerns.

Key factors contributing to patient safety incidents included communication errors, decision-making lapses, and workload challenges, demonstrating that residents are willing to discuss these issues in a supportive, blame-free environment.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Patient safety stories: a project utilizing narratives in resident training. Cox, LM., Logio, LS.[2015]

The Local Healthcare Authority of Romagna developed a desktop application using open-source R software to monitor inpatient falls, which are the most common adverse events in hospitals, helping to improve patient safety.

The application not only tracked fall rates effectively across 29 hospital units but also identified critical data collection issues, leading to targeted improvement actions and significant cost savings.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Process Control Charts in Falls Prevention: The Experience of the Local Healthcare Authority of Romagna, Italy. Scagliarini, M., Boccaforno, N., Donati, R., et al.[2022]

Narrative medicine (NM) enhances the understanding of disease and suffering by fostering communication between patients and healthcare providers, which is particularly beneficial in the complex field of cancer management.

The introduction of narrative oncology (NO) utilizes NM skills to improve relationships and trust among oncologists, patients, and caregivers, creating a more empathetic healthcare environment that can enhance cancer care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Lessons from narrative medicine: Cancer care will improve with narrative oncologyLessons from narrative medicine: Cancer care will improve with narrative oncology. Mohanti, BK.[2022]

A Narrative Medicine course using Herman Melville's 'Bartleby, the Scrivener' helps medical students develop essential skills like empathy and narrative competence by reflecting on complex human experiences.

The story illustrates the challenges of empathy in medical practice, prompting discussions about professionalism and personal values, which are crucial for effective patient care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

[Pity as pain: Narrative Medicine and Melville's "Bartleby"]. Wohlmann, A.[2023]

The study analyzed the experiences of 15 women aged 34 to 60 diagnosed with breast cancer, revealing that societal expectations often added pressure to their cancer journey, influencing decisions about treatment and self-presentation.

Participants expressed the need for emotional space to process feelings like rage and sadness, highlighting the importance of supportive communication and validation of their long-term treatment effects, rather than simply promoting a positive attitude.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Thematic analysis of illness narratives as an example of an approach to better understand the lived experience of women diagnosed with breast cancer in Spain. Mesa Freydell, N., Martínez Pérez, A., Schneider Fontán, J.[2022]

Narrative medicine, which emphasizes understanding patients' stories and emotions, has rapidly developed in China since 2011, enhancing the doctor-patient relationship through empathy and trust.

Incorporating narrative medicine courses into medical education can improve future doctors' narrative competence, ultimately leading to better patient-centered care and clinician satisfaction.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

[What is narrative medicine?] Guo, L.[2022]

References

1. United States pubmed.ncbi.nlm.nih.gov

Storytelling intervention for patients with cancer: part 2--pilot testing. [2013]

2. Switzerland pubmed.ncbi.nlm.nih.gov

Narrative Medicine: A Digital Diary in the Management of Bone and Soft Tissue Sarcoma Patients. Preliminary Results of a Multidisciplinary Pilot Study. [2022]

3. Italy pubmed.ncbi.nlm.nih.gov

[Narrative medicine in the oncological clinical practice: the path from a story-telling intervention to a narrative digital diary.] [2019]

4. United States pubmed.ncbi.nlm.nih.gov

Patients' illness narratives-From being healthy to living with incurable cancer: Encounters with doctors through the disease trajectory. [2023]

5. England pubmed.ncbi.nlm.nih.gov

The Impact of a Narrative Medicine Life Story Pilot Program on Press Ganey™ Scores in an Outpatient Cancer Center. [2023]

6. Japan pubmed.ncbi.nlm.nih.gov

Utility of an adverse drug event database based on the narrative accounts of patients with breast cancer. [2020]

7. Germany pubmed.ncbi.nlm.nih.gov

The adverse drug reaction reporting assignment for specialist oncology nurses: a preliminary evaluation of quality, relevance and educational value in a prospective cohort study. [2019]

8. United States pubmed.ncbi.nlm.nih.gov

Adverse-drug-event surveillance using narrative nursing records in electronic nursing records. [2013]

9. United States pubmed.ncbi.nlm.nih.gov

Patient safety stories: a project utilizing narratives in resident training. [2015]

10. Germany pubmed.ncbi.nlm.nih.gov

Process Control Charts in Falls Prevention: The Experience of the Local Healthcare Authority of Romagna, Italy. [2022]

11. India pubmed.ncbi.nlm.nih.gov

Lessons from narrative medicine: Cancer care will improve with narrative oncologyLessons from narrative medicine: Cancer care will improve with narrative oncology. [2022]

12. Germany pubmed.ncbi.nlm.nih.gov

[Pity as pain: Narrative Medicine and Melville's "Bartleby"]. [2023]

13. England pubmed.ncbi.nlm.nih.gov

Thematic analysis of illness narratives as an example of an approach to better understand the lived experience of women diagnosed with breast cancer in Spain. [2022]

14. China pubmed.ncbi.nlm.nih.gov

[What is narrative medicine?] [2022]