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

TY - JOUR

T1 - Disease-related factors affecting timely lymphoma diagnosis

T2 - a qualitative study exploring patient experiences

AU - Howell, Debra

AU - Hart, Ruth Isla

AU - Smith, Alexandra Gwen

AU - Macleod, Una

AU - Patmore, Russell

AU - Roman, Eve

N1 - Funding Information: This research was supported by funding from Cancer Research UK (National Awareness and Early Diagnosis Initiative: C38860/A13509); the Haematological Malignancy Research Network (HMRN) is funded by Bloodwise (Award: 15037). Ethical approval The study had National Research Ethics Service approval from Yorkshire & The Humber — South Yorkshire Research Ethics Committee (REC 12/YH/0149); the HMRN has ethical approval from Leeds West Research Ethics Committee (REC 04/01205/69). Publisher Copyright: © British Journal of General Practice. © British Journal of General Practice 2019.

PY - 2019/2

Y1 - 2019/2

N2 - Background Expediting cancer diagnosis is widely perceived as one way to improve patient outcomes. Evidence indicates that lymphoma diagnosis is often delayed, yet understanding of issues influencing this is incomplete. Aim To explore patients' and their relatives' 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, from an established population-based cohort in the north of England. Method Semi-structured interviews with 35 patients and 15 of their relatives. Interviews were audiorecorded and transcribed, and qualitative descriptive analysis was undertaken. Results Participant accounts suggest that certain features of lymphoma can impact on patients' and healthcare 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, frequently non-specific, and often initially thought to be 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 This study 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 of lymphoma are lacking.

AB - Background Expediting cancer diagnosis is widely perceived as one way to improve patient outcomes. Evidence indicates that lymphoma diagnosis is often delayed, yet understanding of issues influencing this is incomplete. Aim To explore patients' and their relatives' 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, from an established population-based cohort in the north of England. Method Semi-structured interviews with 35 patients and 15 of their relatives. Interviews were audiorecorded and transcribed, and qualitative descriptive analysis was undertaken. Results Participant accounts suggest that certain features of lymphoma can impact on patients' and healthcare 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, frequently non-specific, and often initially thought to be 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 This study 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 of lymphoma are lacking.

KW - Cancer

KW - Diagnosis

KW - General practice

KW - Help seeking

KW - Lymphoma

KW - Primary care

KW - Qualitative research

UR - http://www.scopus.com/inward/record.url?scp=85060931982&partnerID=8YFLogxK

U2 - 10.3399/bjgp19X701009

DO - 10.3399/bjgp19X701009

M3 - Article

C2 - 30692091

SN - 1478-5242

VL - 69

SP - e134-e145

JO - The British journal of general practice : the journal of the Royal College of General Practitioners

JF - The British journal of general practice : the journal of the Royal College of General Practitioners

IS - 679

ER -