Evidence map›Paper›PMID 36495465›Full record

ArticleJournal of cancer survivorship : research and practice2024

Living in the twilight zone: a qualitative study on the experiences of patients with advanced cancer obtaining long-term response to immunotherapy or targeted therapy.

Laura C Zwanenburg, Karijn P M Suijkerbuijk, Sophie I van Dongen, José J Koldenhof, Anne S van Roozendaal, Marije L van der Lee, Melanie P J Schellekens

Abstract read
In one paragraph

Article in Journal of cancer survivorship : research and practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
22citing papers in PubMed, 3 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

22 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Health-related quality of life domains relevant to people in Europe undergoing cancer treatment: a systematic review of qualitative research.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
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  20. What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024
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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

7 authors.

Laura C ZwanenburgDepartment of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands. lzwanenburg@hdi.nl.
Karijn P M SuijkerbuijkDepartment of Medical Oncology, University Medical Centre in Utrecht, Utrecht, The Netherlands.
Sophie I van DongenDepartment of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands.
José J KoldenhofDepartment of Medical Oncology, University Medical Centre in Utrecht, Utrecht, The Netherlands.
Anne S van RoozendaalDepartment of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands.
Marije L van der LeeDepartment of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands.
Melanie P J SchellekensDepartment of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands.

Funding

KWF Kankerbestrijding 12932
6 · The paper itself

Abstract

purposeThe introduction of immunotherapy and targeted therapy has drastically improved the life expectancy of patients with advanced cancer. Despite improved survival, obtaining long-term response can be highly distressing and comes with uncertainties that affect several life domains. The aim of this study is to gain a deeper understanding of long-term responders' lived experiences with obtaining long-term response to immunotherapy or targeted therapy.

methodsWe conducted an exploratory qualitative study using thematic data analysis. Semi-structured in-depth interviews were conducted with 17 patients with advanced melanoma or lung cancer who had a confirmed response to or long-term stable disease while on immunotherapy or targeted therapy.

resultsLong-term responders are living in a twilight zone, where they neither feel like a patient, nor feel healthy. This impacts their self-image, interactions with their social environment, and feelings of uncertainty. Due to their uncertain life perspective, long-term responders are going back and forth between hope and despair, while they are longing for their 'old' life, several barriers, such as protective behavior of the social environment, force them to adjust to a life with cancer.

conclusionLong-term responders are facing many challenges, such as searching for a renewed identity, dealing with ongoing uncertainty, and having to adapt to a new normal. This emphasizes the importance of providing this new patient group with tailored information and support. IMPLICATIONS FOR CANCER SURVIVORS: Healthcare professionals can support patients by normalizing their feelings and providing space for varying emotions. Using patient-tailored scan frequencies could help temper fear of progression.

Indexed as

ImmunotherapyQualitative ResearchAdaptation, PsychologicalAdultAgedCancer SurvivorsFemaleHumansLung NeoplasmsMaleMiddle AgedMolecular Targeted TherapyNeoplasmsQuality of LifeImmunotherapyLung neoplasmsMelanomaMolecular targeted therapyPsycho-oncologyQualitative research

Identifiers

PMID36495465
PMCPMC11082039

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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 OpenQuestion graph.