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The Odyssey from Symptom to Diagnosis of Pulmonary Hypertension from the Patients and Spouses Perspective

Ivarsson, Bodil LU ; Johansson, Anders LU and Kjellström, Barbro LU (2021) In Journal of Primary Care and Community Health 12.
Abstract

Introduction/objective: Diagnostic delays in pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are related to increased morbidity and mortality. The risk of a delayed, or even a missed, diagnosis is high as the conditions are rare. The aim was to describe patients’ and spouses’ experiences of the journey from the first symptom to an established diagnosis. Methods: A secondary analysis of 31 transcripts, based on 2 primary datasets containing interviews with 17 patients and 14 spouses, was carried out and analyzed according to qualitative content analysis. Results: One overarching category was revealed from the content analysis; “The journey from doubt and hope to receive the diagnosis.” Five... (More)

Introduction/objective: Diagnostic delays in pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are related to increased morbidity and mortality. The risk of a delayed, or even a missed, diagnosis is high as the conditions are rare. The aim was to describe patients’ and spouses’ experiences of the journey from the first symptom to an established diagnosis. Methods: A secondary analysis of 31 transcripts, based on 2 primary datasets containing interviews with 17 patients and 14 spouses, was carried out and analyzed according to qualitative content analysis. Results: One overarching category was revealed from the content analysis; “The journey from doubt and hope to receive the diagnosis.” Five subcategories were identified as: overall experiences; ignoring symptoms; seeking primary care/hospital specialty care; blame and stigma; and finding a pulmonary hypertension specialist clinic. The main finding was that both patients and spouses experienced that waiting for a diagnosis and the deteriorating state of health led to anxiety and frustration. The knowledge about rare diseases among health professionals needs to be improved to enable a timelier diagnosis and initiation of treatment. Conclusion: Patients’ and spouses’ lives were negatively affected by having to search for a correct diagnosis. In order for health care to identify rare diseases earlier, a well-functioning and responsive health care system, in primary care as well as in specialist care, is needed. Symptoms like breathlessness and fatigue are often unspecific but should not be ignored. Keeping the patient and spouse in the loop, and providing information that the search for an answer might take time is essential for health care providers to create trust.

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author
; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
diagnostic errors, help-seeking behavior, partner communication, rare disease, sign and symptom
in
Journal of Primary Care and Community Health
volume
12
publisher
SAGE Publications
external identifiers
  • scopus:85109086752
  • pmid:34219509
ISSN
2150-1319
DOI
10.1177/21501327211029241
language
English
LU publication?
yes
id
50786bc2-4733-4ad7-a17d-98bc2596ca5e
date added to LUP
2021-08-13 08:18:22
date last changed
2024-06-15 14:17:17
@article{50786bc2-4733-4ad7-a17d-98bc2596ca5e,
  abstract     = {{<p>Introduction/objective: Diagnostic delays in pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are related to increased morbidity and mortality. The risk of a delayed, or even a missed, diagnosis is high as the conditions are rare. The aim was to describe patients’ and spouses’ experiences of the journey from the first symptom to an established diagnosis. Methods: A secondary analysis of 31 transcripts, based on 2 primary datasets containing interviews with 17 patients and 14 spouses, was carried out and analyzed according to qualitative content analysis. Results: One overarching category was revealed from the content analysis; “The journey from doubt and hope to receive the diagnosis.” Five subcategories were identified as: overall experiences; ignoring symptoms; seeking primary care/hospital specialty care; blame and stigma; and finding a pulmonary hypertension specialist clinic. The main finding was that both patients and spouses experienced that waiting for a diagnosis and the deteriorating state of health led to anxiety and frustration. The knowledge about rare diseases among health professionals needs to be improved to enable a timelier diagnosis and initiation of treatment. Conclusion: Patients’ and spouses’ lives were negatively affected by having to search for a correct diagnosis. In order for health care to identify rare diseases earlier, a well-functioning and responsive health care system, in primary care as well as in specialist care, is needed. Symptoms like breathlessness and fatigue are often unspecific but should not be ignored. Keeping the patient and spouse in the loop, and providing information that the search for an answer might take time is essential for health care providers to create trust.</p>}},
  author       = {{Ivarsson, Bodil and Johansson, Anders and Kjellström, Barbro}},
  issn         = {{2150-1319}},
  keywords     = {{diagnostic errors; help-seeking behavior; partner communication; rare disease; sign and symptom}},
  language     = {{eng}},
  publisher    = {{SAGE Publications}},
  series       = {{Journal of Primary Care and Community Health}},
  title        = {{The Odyssey from Symptom to Diagnosis of Pulmonary Hypertension from the Patients and Spouses Perspective}},
  url          = {{http://dx.doi.org/10.1177/21501327211029241}},
  doi          = {{10.1177/21501327211029241}},
  volume       = {{12}},
  year         = {{2021}},
}