Cargando…

‘Unpacking’ pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives

OBJECTIVES: To explore alignment of experiences before lymphoma and myeloma diagnosis with the appraisal, help seeking and diagnostic intervals in the Model of Pathways to Treatment (MPT). DESIGN: A qualitative study using in-depth semistructured interviews with patients and relatives. Interviews we...

Descripción completa

Detalles Bibliográficos
Autores principales: Howell, Debra, Hart, Ruth, Smith, Alexandra, Macleod, Una, Patmore, Russell, Roman, Eve
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7045052/
https://www.ncbi.nlm.nih.gov/pubmed/32054627
http://dx.doi.org/10.1136/bmjopen-2019-034244
_version_ 1783501699826057216
author Howell, Debra
Hart, Ruth
Smith, Alexandra
Macleod, Una
Patmore, Russell
Roman, Eve
author_facet Howell, Debra
Hart, Ruth
Smith, Alexandra
Macleod, Una
Patmore, Russell
Roman, Eve
author_sort Howell, Debra
collection PubMed
description OBJECTIVES: To explore alignment of experiences before lymphoma and myeloma diagnosis with the appraisal, help seeking and diagnostic intervals in the Model of Pathways to Treatment (MPT). DESIGN: A qualitative study using in-depth semistructured interviews with patients and relatives. Interviews were transcribed verbatim, anonymised and analysed using qualitative description. SETTING: A UK population-based haematological malignancy patient cohort. PARTICIPANTS: Fifty-five patients (35 lymphoma, 20 myeloma: diagnosed 2014–2016) and 28 relatives participated, within around a year of the patient’s diagnosis. Patients were selected from those in the cohort who had returned a questionnaire about their symptoms and help seeking, and consented to contact for further research. Sampling was purposive, to achieve maximum variation in age, sex and time to diagnosis. RESULTS: Participants described time from symptom onset to diagnosis as ranging from several weeks to years. Pathways largely aligned with MPT components and help seeking could lead to the rapid investigations and identification of abnormalities. However, symptoms could be vague and/or inadvertently interpreted as other conditions, which if perpetuated, could cause diagnostic delay. The latter was associated with chaotic pathways, with activities rarely occurring only once or in a linear sequence. Rather, intermittent or ongoing processes were described, moving forward and backwards through intervals. This is ‘unpacked’ within five themes: (1) appraisal and reappraisal; (2) patient-initiated self-management/treatment; (3) initial help seeking; (4) re-presentation; and (5) patient-initiated actions, decisions and emotions during re-presentation. Within these themes, various healthcare professionals were consulted, often many times, as symptoms persisted/progressed. Input from family/friends was described as substantial, as was the extent to which information seeking occurred. CONCLUSION: Lymphoma and myeloma pathways align with the MPT, but do not fully capture the repetition and complexity described by participants. Time to diagnosis was often prolonged, despite the best efforts of patients, relatives and healthcare professionals. The impact of National Health Service England’s Multi-diagnostic Disciplinary Centres on time to haematological cancer diagnosis remains to be seen.
format Online
Article
Text
id pubmed-7045052
institution National Center for Biotechnology Information
language English
publishDate 2020
publisher BMJ Publishing Group
record_format MEDLINE/PubMed
spelling pubmed-70450522020-03-09 ‘Unpacking’ pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives Howell, Debra Hart, Ruth Smith, Alexandra Macleod, Una Patmore, Russell Roman, Eve BMJ Open General practice / Family practice OBJECTIVES: To explore alignment of experiences before lymphoma and myeloma diagnosis with the appraisal, help seeking and diagnostic intervals in the Model of Pathways to Treatment (MPT). DESIGN: A qualitative study using in-depth semistructured interviews with patients and relatives. Interviews were transcribed verbatim, anonymised and analysed using qualitative description. SETTING: A UK population-based haematological malignancy patient cohort. PARTICIPANTS: Fifty-five patients (35 lymphoma, 20 myeloma: diagnosed 2014–2016) and 28 relatives participated, within around a year of the patient’s diagnosis. Patients were selected from those in the cohort who had returned a questionnaire about their symptoms and help seeking, and consented to contact for further research. Sampling was purposive, to achieve maximum variation in age, sex and time to diagnosis. RESULTS: Participants described time from symptom onset to diagnosis as ranging from several weeks to years. Pathways largely aligned with MPT components and help seeking could lead to the rapid investigations and identification of abnormalities. However, symptoms could be vague and/or inadvertently interpreted as other conditions, which if perpetuated, could cause diagnostic delay. The latter was associated with chaotic pathways, with activities rarely occurring only once or in a linear sequence. Rather, intermittent or ongoing processes were described, moving forward and backwards through intervals. This is ‘unpacked’ within five themes: (1) appraisal and reappraisal; (2) patient-initiated self-management/treatment; (3) initial help seeking; (4) re-presentation; and (5) patient-initiated actions, decisions and emotions during re-presentation. Within these themes, various healthcare professionals were consulted, often many times, as symptoms persisted/progressed. Input from family/friends was described as substantial, as was the extent to which information seeking occurred. CONCLUSION: Lymphoma and myeloma pathways align with the MPT, but do not fully capture the repetition and complexity described by participants. Time to diagnosis was often prolonged, despite the best efforts of patients, relatives and healthcare professionals. The impact of National Health Service England’s Multi-diagnostic Disciplinary Centres on time to haematological cancer diagnosis remains to be seen. BMJ Publishing Group 2020-02-12 /pmc/articles/PMC7045052/ /pubmed/32054627 http://dx.doi.org/10.1136/bmjopen-2019-034244 Text en © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
spellingShingle General practice / Family practice
Howell, Debra
Hart, Ruth
Smith, Alexandra
Macleod, Una
Patmore, Russell
Roman, Eve
‘Unpacking’ pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives
title ‘Unpacking’ pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives
title_full ‘Unpacking’ pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives
title_fullStr ‘Unpacking’ pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives
title_full_unstemmed ‘Unpacking’ pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives
title_short ‘Unpacking’ pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives
title_sort ‘unpacking’ pathways to lymphoma and myeloma diagnosis: do experiences align with the model of pathways to treatment? findings from a uk qualitative study with patients and relatives
topic General practice / Family practice
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7045052/
https://www.ncbi.nlm.nih.gov/pubmed/32054627
http://dx.doi.org/10.1136/bmjopen-2019-034244
work_keys_str_mv AT howelldebra unpackingpathwaystolymphomaandmyelomadiagnosisdoexperiencesalignwiththemodelofpathwaystotreatmentfindingsfromaukqualitativestudywithpatientsandrelatives
AT hartruth unpackingpathwaystolymphomaandmyelomadiagnosisdoexperiencesalignwiththemodelofpathwaystotreatmentfindingsfromaukqualitativestudywithpatientsandrelatives
AT smithalexandra unpackingpathwaystolymphomaandmyelomadiagnosisdoexperiencesalignwiththemodelofpathwaystotreatmentfindingsfromaukqualitativestudywithpatientsandrelatives
AT macleoduna unpackingpathwaystolymphomaandmyelomadiagnosisdoexperiencesalignwiththemodelofpathwaystotreatmentfindingsfromaukqualitativestudywithpatientsandrelatives
AT patmorerussell unpackingpathwaystolymphomaandmyelomadiagnosisdoexperiencesalignwiththemodelofpathwaystotreatmentfindingsfromaukqualitativestudywithpatientsandrelatives
AT romaneve unpackingpathwaystolymphomaandmyelomadiagnosisdoexperiencesalignwiththemodelofpathwaystotreatmentfindingsfromaukqualitativestudywithpatientsandrelatives