Evidence map›Paper›PMID 39038253›Full record

ArticleJCO oncology practice2025

Patient and Caregiver Experience With the Hope and Prognostic Uncertainty of Immunotherapy: A Qualitative Study.

Mary C Boulanger, Ayo S Falade, Kelly Hsu, Robert K Sommer, Ashley Zhou, Roshni Sarathy, Donald Lawrence, Ryan J Sullivan, Lara Traeger, Joseph A Greer and 2 more

Abstract read
In one paragraph

Article in JCO oncology practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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  3. Review
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  7. Review
  8. Economic burden ofFrontiers in public health · 2026
    Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Mary C BoulangerDivision of Hematology and Oncology, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA.ORCID 0000-0002-1368-6350
Ayo S FaladeDepartment of Internal Medicine, Mass General Brigham Salem Hospital, Salem, MA.ORCID 0000-0001-9201-6998
Kelly HsuDivision of Hematology and Oncology, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA.ORCID 0000-0003-2885-6946
Robert K SommerDivision of Hematology and Oncology, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA.ORCID 0000-0001-5706-3019
Ashley ZhouDivision of Hematology and Oncology, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA.
Roshni SarathyDivision of Palliative Care, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA.ORCID 0009-0002-7886-7774
Donald LawrenceDivision of Hematology and Oncology, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA.
Ryan J SullivanDivision of Hematology and Oncology, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA.ORCID 0000-0001-5344-6645
Lara TraegerDepartment of Psychiatry, Massachusetts General Hospital, Boston, MA.ORCID 0000-0002-8175-5725
Joseph A GreerDepartment of Psychiatry, Massachusetts General Hospital, Boston, MA.ORCID 0000-0002-0979-4076
Jennifer S TemelDivision of Hematology and Oncology, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA.ORCID 0000-0002-7268-5921
Laura A PetrilloDivision of Palliative Care, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA.ORCID 0000-0002-8721-4858

Funding

Training Program in Cancer Biology and TherapeuticsT32CA071345 · NCI · MASSACHUSETTS GENERAL HOSPITAL · PI Daniel A. Haber, Lecia V. Sequist · 1997 to 2026
$10.6M
Optimizing Supportive Care for Patients with Metastatic Lung Cancer in the Era of Precision OncologyK08CA263549 · NCI · MASSACHUSETTS GENERAL HOSPITAL · PI Laura Anne Petrillo · 2022 to 2026
$1.4M
NCI NIH HHS K08 CA263549NCI NIH HHS T32 CA071345
6 · The paper itself

Abstract

purposeImmunotherapy has improved survival for patients with melanoma and non-small cell lung cancer (NSCLC). Yet, as responses vary widely, immunotherapy also introduces challenges in prognostic communication. In this study, we sought to explore how patients and caregivers learned about the goal of immunotherapy and their experience of living with uncertainty. MATERIALS AND

methodsWe conducted a qualitative study of patients with stage III or IV melanoma or stage IV NSCLC within 12 weeks of initiating or 12 months of discontinuing immunotherapy, and their caregivers. We conducted in-depth interviews with participants to explore how they learned about immunotherapy from oncology clinicians and how they experienced uncertainty. We used a framework approach to analyze interview transcripts and synthesized concepts into themes.

resultsForty-two patients and 10 caregivers participated; median age was 67 years and most were male (68%), white (95%), married (61%), and had melanoma (62%). We identified four themes: (1) the oncology team shaped participants' hopeful expectations of immunotherapy, including as a potential cure among those with melanoma; (2) distress related to prognostic uncertainty particularly affected patients who experienced toxicity or progressive disease; (3) patients who did not have long-term responses experienced overwhelming disappointment; and (4) some patients and caregivers had conflicting preferences for prognostic information. Participants provided suggestions to improve education and underscored unmet psychosocial needs.

conclusionPatients and caregivers held optimistic expectations of immunotherapy, which resulted in heightened disappointment among the subset with progression or toxicity. Clinicians should elicit information preferences of both patients and caregivers, as these may be disparate. Our results highlight the need to optimize prognostic communication and support for living with uncertainty among patients receiving immunotherapy.

Indexed as

Carcinoma, Non-Small-Cell LungCaregiversHopeImmunotherapyLung NeoplasmsMelanomaAgedAged, 80 and overFemaleHumansMaleMiddle AgedPrognosisQualitative ResearchUncertainty

Identifiers

PMID39038253
PMCPMC11751125

What Socratic holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.