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Disease-related factors affecting timely lymphoma diagnosis: a qualitative study exploring patient experiences

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JournalThe British journal of general practice : the journal of the Royal College of General Practitioners
DateAccepted/In press - 24 Sep 2018
DatePublished (current) - 28 Jan 2019
Original languageEnglish

Abstract

Abstract
Background
Expediting cancer diagnosis is widely perceived as one of the keys to improving patient outcomes.
Evidence indicates that lymphoma diagnosis is often delayed, yet understanding of the issues
influencing this is incomplete.
Aim
To explore patients’ perceptions of disease-related factors affecting time to diagnosis of Hodgkin
and non-Hodgkin lymphoma.
Design and setting
Qualitative UK study involving patients with indolent and aggressive lymphomas, and their
relatives.
Method
Semi-structured interviews with 35 patients recruited from an established population-based cohort
and 15 of their relatives. Interviews were audio-recorded and transcribed, and qualitative
descriptive analysis undertaken.
Results
Accounts suggest that certain features of lymphoma can impact on patients’ and health care
providers’ (HCPs) responses to disease onset. Three characteristics stand out: disease occurrence
(rare), manifestation (varied), and investigative options (often inconclusive). Interviewees described
how they (and some HCPs) lacked familiarity with lymphoma, seldom considering it a likely
explanation for their symptoms. Symptoms reported were highly variable, often non-specific and
said to be initially associated with various benign, self-limiting causes. Blood tests and other
investigations, while frequently able to detect abnormalities, did not reliably indicate malignancy.
Interviewees reported the potential for improvements among HCPs in information-gathering,
communication of uncertainty, and re-presentation advice for non-resolving/progressive health
changes.
Conclusion
Our evidence demonstrates the complex characteristics of lymphoma, perceived by patients as
prolonging time to diagnosis, often despite significant effort by themselves, their relatives and
HCPs to expedite this process. The findings also illustrate why simple solutions to delayed
diagnosis are lacking in this area.

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