Long‐term mental wellbeing of adolescents and young adults diagnosed with venous thromboembolism: results from a multistage mixed methods study

Højen, Anette Arbjerg; Sørensen, Erik Elgaard; Dreyer, Pia; Søgaard, Mette; Larsen, Torben Bjerregaard

doi:10.1111/jth.13873

Cited by 14 publications

(9 citation statements)

References 43 publications

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“…For some, PE is regarded as a life‐changing event that leads to a loss of identity, intrusive thoughts and memories, and a need to live a different lifestyle as a result of adapting to physical restraints 10 . Impaired mental well‐being in young adults with VTE has been linked largely to uncertainty regarding their long‐term health and fear of recurrence 11,12 . Other common themes reported by patients with VTE include insecurity in symptom management, perceived loss of immortality, negative changes in self‐perception, and living in a constant state of alarm 13 .…”

Section: Introductionmentioning

confidence: 99%

The psychological impact of pulmonary embolism: A mixed‐methods study

Tran

Redley

Wit

2021

Research and Practice in Thrombosis and Haemostasis

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Background Patients diagnosed with pulmonary embolism (PE) are reported to experience symptoms of posttraumatic stress disorder (PTSD) and existential anxiety following their diagnosis. They may also experience negative changes in perspective and hypervigilance of PE symptoms. Objective The aim of this study was to document the mental and emotional experience associated with PE diagnosis through the lens of PTSD, to better understand the factors involved in psychological distress following receipt of a PE diagnosis. Patients/Methods This was a mixed‐methods study in two parts: (i) measurement of self‐reported PTSD symptoms among patients attending thrombosis clinic and (ii) semistructured interviews with patients about their experience of receiving a diagnosis of PE and its psychological aftermath. Results Of 72 patients who participated in the survey, two met the criteria for a tentative diagnosis of PTSD. The semistructured interviews with 37 patients suggested that around half of respondents experienced some degree of ongoing psychological distress. Those with psychological distress often recalled painful symptoms, recalled diagnosis delivery as stressful, worried about PE recurrence, and had anxieties about stopping their anticoagulant medication. Few patients reported inclination to seek support from professional mental health services. Conclusions We found ongoing and untreated psychological distress among people who were previously diagnosed with PE.

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Section: Introductionmentioning

confidence: 99%

The psychological impact of pulmonary embolism: A mixed‐methods study

Tran

Redley

Wit

2021

Research and Practice in Thrombosis and Haemostasis

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“…Fear of recurrence of PE is assessed in the PEmb‐QoL and has been identified as an important cause for emotional and psychological distress after PE diagnosis. 25 , 26 , 27 , 28 , 29 The PEmb‐QoL assesses fear of recurrence by asking: “These questions are about how you feel and how things have been with you during the past 4 weeks as a result of your lung symptoms. For each question, please give the one answer that comes closest to the way you have been feeling.…”

Section: Discussionmentioning

confidence: 99%

Assessing quality of life after pulmonary embolism: Comparing results from the PEmb‐QoL with semistructured interviews

Hernandez‐Nino

Ott

Thomas

et al. 2022

Research and Practice in Thrombosis and Haemostasis

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Background The Pulmonary Embolism Quality of Life questionnaire (PEmb‐QoL) assesses quality of life (QoL) in patients with previous pulmonary embolism (PE). Objective Our aim was to assess the agreement between the PEmb‐QoL and interviews and to explore other QoL concerns in patients diagnosed with PE. Methods This mixed‐method study included interviews with 21 patients about QoL after PE, followed by the PEmb‐QoL questionnaire. In interviews, patients were asked about their lived experiences and impact of PE. Our analysis identified the frequency and severity of decreased QoL in qualitative interviews and compared with the PEmb‐QoL score. Excerpts that described the effect of PE on QoL in interview transcripts were transcoded to match the answers corresponding to the 1 to 6 numeric values for each question from the PEmb‐QoL using a predetermined matrix (eg, “constant” and “daily” = all of the time = value 1) and directly compared with responses on the PEmb‐QoL in the areas of emotional complaints and activities of daily living/social limitations. Results Interviews showed more functional impairment than predicted by PEmb‐QoL. For fear of recurrence, 86% of participants had disagreements between PEmb‐QoL scores and transcoded interview scores. We found 42% disagreement between reported descriptions of the inability to do or enjoy hobbies in interviews and the PEmb‐QoL score. Conclusion Patient interviews showed discordances compared with a validated psychometric tool. To capture a more detailed and accurate picture of the effect of PE on QoL, providers and researchers should consider the addition of qualitative methods to assess outcomes.

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“…A multicenter prospective cohort study (ELOPE) described HRQoL based on SF-36 and PEmb-QoL instruments; dyspnea and functional exercise capacity after a first episode of acute PE where the most important components of patients’ QoL after an acute PE [ 29 ]. According to the ELOPE cohort study, these components improve during follow-up, most notably during the first 3 months after diagnosis and patients display a meaningful improvement [ 30 ]. However, female sex, higher BMI and exercise limitation on 1-month cardiopulmonary exercise test (percent-predicted VO2 peak <80%) are clinical and physiological predictors of decreased improvement [ 30 ].…”

Section: Mental Health Aspects Of Pulmonary Embolismmentioning

confidence: 99%

“…According to the ELOPE cohort study, these components improve during follow-up, most notably during the first 3 months after diagnosis and patients display a meaningful improvement [ 30 ]. However, female sex, higher BMI and exercise limitation on 1-month cardiopulmonary exercise test (percent-predicted VO2 peak <80%) are clinical and physiological predictors of decreased improvement [ 30 ].…”

Section: Mental Health Aspects Of Pulmonary Embolismmentioning

confidence: 99%

Mental Health and Quality of Life in Pulmonary Embolism: A Literature Review

Gkena

Kirgou

Gourgoulianis

et al. 2023

Advances in Respiratory Medicine

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Pulmonary embolismis an acute disease with chronic complications and, although it is not considered a chronic disease, it requires close follow-up. The scope of the present literature review is to decode the existing data concerning quality of life and the mental health impact of PE during the acute and long-term phases of the disease. The majority of studies reported impaired quality of life in patients with PE when compared to population norms, both in the acute phase and >3 months after PE. Quality of life improves over time, irrespectively of the measurement used. Fear of recurrences, elderly, stroke, obesity, cancer and cardiovascular comorbidities are independently associated with worse QoL at follow-up. Although disease specific instruments exist (e.g., the Pulmonary Embolism Quality of Life questionnaire), further research is required in order to develop questionnaires that may fulfil international guideline requirements. The fear of recurrences and the development of chronic symptoms, such as dyspnea or functional limitations, may further impair the mental health burden of PE patients. Mental health may be implicated by post-traumatic stress disorder, anxiety and depressive symptoms present following the acute event. Anxiety may persist for 2 years following diagnosis and may be exaggerated by persistent dyspnea and functional limitations. Younger patients are at higher risk of anxiety and trauma symptoms while elderly patients and patients with previous cardiopulmonary disease, cancer, obesity or persistent symptoms exhibit more frequently impaired QoL. The optimal strategy for the assessment of mental health in this patient pool is not well defined in the literature. Despite mental burden being common following a PE event, current guidelines have not incorporated the assessment or management of mental health issues. Further studies are warranted to longitudinally assess the psychological burden and elucidate the optimal follow-up approach.

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Long‐term mental wellbeing of adolescents and young adults diagnosed with venous thromboembolism: results from a multistage mixed methods study

Cited by 14 publications

References 43 publications

The psychological impact of pulmonary embolism: A mixed‐methods study

The psychological impact of pulmonary embolism: A mixed‐methods study

Assessing quality of life after pulmonary embolism: Comparing results from the PEmb‐QoL with semistructured interviews

Mental Health and Quality of Life in Pulmonary Embolism: A Literature Review

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