Evidence map›Paper›PMID 37568761›Full record

ArticleCancers2023

Patients' Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways.

Sam Martin, Sigrún Eyrúnardóttir Clark, Craig Gerrand, Katie Gilchrist, Maria Lawal, Laura Maio, Ana Martins, Lesley Storey, Rachel M Taylor, Mary Wells and 5 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Cancers, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed, 2 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

12 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
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  3. Review
  4. Observational
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  8. Review
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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

15 authors.

Sam MartinRapid Research Evaluation and Appraisal Lab (RREAL), University College London, London W1W 7TY, UK.ORCID 0000-0002-4466-8374
Sigrún Eyrúnardóttir ClarkRapid Research Evaluation and Appraisal Lab (RREAL), University College London, London W1W 7TY, UK.ORCID 0000-0001-5679-2535
Craig GerrandSarcoma Unit, The Royal National Orthopaedic Hospital, Stanmore HA7 4LP, UK.
Katie GilchristRapid Research Evaluation and Appraisal Lab (RREAL), University College London, London W1W 7TY, UK.ORCID 0000-0002-8529-4997
Maria LawalCancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK.
Laura MaioRapid Research Evaluation and Appraisal Lab (RREAL), University College London, London W1W 7TY, UK.
Ana MartinsCancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK.
Lesley StoreyDepartment of Psychology, Anglia Ruskin University, Cambridge CB1 1PT, UK.
Rachel M TaylorCentre for Nurse, Midwife and Allied Health Profession Research (CNMAR), University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK.ORCID 0000-0002-0853-0925
Mary WellsNursing Directorate, Imperial College Healthcare NHS Foundation Trust, London W2 1NY, UK.
Jeremy S WhelanOncology Division, University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK.
Rachael WindsorPaediatric Directorate, University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK.
Julie WoodfordSarcoma Unit, The Royal National Orthopaedic Hospital, Stanmore HA7 4LP, UK.
Cecilia Vindrola-PadrosRapid Research Evaluation and Appraisal Lab (RREAL), University College London, London W1W 7TY, UK.
Lorna A FernCancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK.ORCID 0000-0003-4821-8466

Funding

Sarcoma UK SUK201.2019
6 · The paper itself

Abstract

Patients with sarcoma often report prolonged time to diagnosis, which is attributed to the rarity of sarcoma and the low awareness of pre-diagnostic signs and symptoms.

aimsTo describe patients' experiences of pre-diagnostic signs/symptoms and pathways to diagnosis, including where help was sought, and the processes involved.

methodsMixed methods involving quantitative, qualitative and inductive thematic analyses using novel process mapping of patient journey data, as reported by the patients. We examined the time from symptom onset to first professional presentation (patient interval, PI), first consultation to diagnostic biopsy, first consultation to diagnosis (diagnostic interval) and first presentation to diagnosis (total interval).

resultsA total of 87 interviews were conducted over 5 months in 2017. Of these, 78 (40 males/38 females) were included. The sarcoma subtypes were bone (n = 21), soft tissue (n = 41), head and neck (n = 9) and gastro-intestinal (GIST; n = 7). Age at diagnosis was 13-24 (n = 7), 25-39 (n = 23), 40-64 (n = 34) and 65+ (n = 14) years. The median PI was 13 days (1-4971) and similar between sarcoma subtypes, with the exception of GIST (mPI = 2 days, (1-60). The longest mPI (31 days, range 4-762) was for those aged 13-24 years. The median diagnostic interval was 87.5 (range 0-5474 days). A total of 21 patients were misdiagnosed prior to diagnosis and symptoms were commonly attributed to lifestyle factors.

conclusionsProlonged times to diagnosis were experienced by the majority of patients in our sample. Further research into the evolution of pre-diagnostic sarcoma symptoms is required to inform awareness interventions.

Indexed as

adolescencediagnostic timelinessprocess mappingsarcomateenagers and young adultstime to diagnosis

Identifiers

PMID37568761
PMCPMC10417695

What OpenQuestion holds

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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.