U.S. flag

An official website of the United States government

NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.

Sinclair A, Peprah K, Quay T, et al. Optimal Strategies for the Diagnosis of Acute Pulmonary Embolism: A Health Technology Assessment [Internet]. Ottawa (ON): Canadian Agency for Drugs and Technologies in Health; 2018 Jan. (CADTH Optimal Use Report, No. 6.3b.)

Cover of Optimal Strategies for the Diagnosis of Acute Pulmonary Embolism: A Health Technology Assessment

Optimal Strategies for the Diagnosis of Acute Pulmonary Embolism: A Health Technology Assessment [Internet].

Show details

Patient Perspectives and Experiences

Study Design

A rapid review of the published qualitative literature was conducted to gain an understanding of patients’, family members’, and nonclinical caregivers’ perspectives and experiences of the process of undergoing diagnosis for acute PE.

Research Questions

The research questions were developed in response to the policy issues and in consultation with subject and content matter experts. As is typical in qualitative research, the questions were refined in an iterative process through the course of the review to respond to the quantity and nature of relevant published literature. The goal was to provide a relevant response to the policy concern based on the available qualitative literature. The first research question, listed below, focuses on the experience of diagnostic processes for PE as well as experiences with the technologies of interest. Following an initial literature search, it was deemed there was insufficient literature to answer the stated question, and so an additional research question, and corresponding literature search, was added to broaden the focus to the experiences of diagnosis in any setting, including the emergency department, for any condition.

  1. What are the experiences with the diagnostic process from the perspective of those who have undergone testing for acute PE, in any setting, including the emergency department, from the perspective of patients, their family members, and nonclinical caregivers?
  2. What are the experiences with diagnostic imaging for any reason and in any setting, including the emergency department, from the perspective of patients, their family members, and/or their nonclinical caregivers?


Literature Search Methods

The literature search was performed by an information specialist, using a search strategy peer-reviewed according to the PRESS checklist — an evidence-based checklist for the peer review of electronic search strategies.79

Patient experiences information was identified by searching the following bibliographic databases: MEDLINE (1946–), with in-process records and daily updates, via Ovid; Embase (1974–) via Ovid; PsycINFO (1967–) via Ovid; CINAHL (1981–) via EBSCO; PubMed; and Scopus. The search strategy comprised both controlled vocabulary, such as the National Library of Medicine’s MeSH terms, and keywords. The main search concept was medical imaging modalities and terms related to patient experiences, perspectives, beliefs, and values. Methodological filters were applied to limit retrieval qualitative studies. Retrieval was limited to documents published since January 1, 2006. Results were limited to English- or French-language publications. Conference abstracts were excluded from the search results. The detailed strategy can be found in Appendix 1.

The search was completed on December 14, 2016. Regular alerts were established to update the search until the publication of the final report. Regular search updates were performed on databases that do not provide alert services. A supplemental search was conducted on December 16, 2016 for qualitative studies on anticoagulant drugs.

Grey literature (literature that is not commercially published) was identified by searching sources identified in the Grey Matters checklist (https://www.cadth.ca/grey-matters), which includes the websites of clinical trial registries, regulatory agencies, Health Technology Assessment agencies, clinical guideline repositories, and professional associations. Google and other Internet search engines were used to search for additional Web-based materials.

Eligibility Criteria

All English- and French-language reports of studies of any qualitative design that describe the perspectives of adults who 1) have undergone testing for acute pulmonary embolism; 2) have experience with diagnostic imaging technologies for any reason and in any setting, including the emergency department, were eligible for this review. We were also interested in reports describing related perspectives and experiences of family members and other nonclinical caregivers. To be eligible, studies must have explored or assessed the perspectives of patients and caregivers directly rather than indirectly, for example, through another person. Studies that assessed only clinician perspectives were excluded. The following types of publications were also excluded: theses and dissertations, data presented in abstract form only, book chapters, editorials, and letters to the editor. Typically, in quantitative syntheses, only primary studies are included to avoid the issue of double-counting or giving undue weight to one set of study findings. As double-counting is less of an issue in qualitative research, in which the analytical focus is interpretive rather than aggregative, individual studies that have already been included in systematic reviews remain eligible for inclusion in our review. The eligibility criteria are listed in Table 36 below.

Table 36. Eligibility Criteria.

Table 36

Eligibility Criteria.

Screening and Selecting Studies for Inclusion

One reviewer screened citations identified through the literature search. In the first level of screening, titles and abstracts were reviewed, and the full text of potentially relevant articles was retrieved and assessed for inclusion by the same reviewer. The final selection of full-text articles was based on the eligibility criteria in Table 36.

Critical Appraisal of Individual Studies

The included primary qualitative studies were critically appraised by one reviewer using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist283 as a guide. Systematic reviews of qualitative studies were appraised using the CASP Systematic Review Checklist. Summary scores were not calculated for the included studies; rather, the results of the quality-assessment process are reported narratively and summarized to highlight the strengths and limitations of each study. Quality assessment was not used as a basis for excluding any studies deemed to be of low quality.

Data Collection and Extraction

From each eligible article, descriptive data were extracted by one reviewer into a standardized electronic form developed a priori. Descriptive data included such items as first author, article title, study objectives, participant characteristics, and study design. Further, result statements from all eligible articles relevant to the research question were captured for analysis, or coded, using NVivo qualitative data analysis software (QSR International Pty Ltd. Version 11, 2015).

Data Analysis

Descriptive Analysis

A descriptive analysis was performed to characterize the included studies in terms of important study and patient characteristics (e.g., sample size, inclusion criteria). Study and patient characteristics are summarized in tables and accompanied by a narrative description.

Thematic Analysis

A thematic analysis was conducted by a single reviewer using NVivo 11.3.2. To begin, the data were coded line by line for meaning and content, starting with an a priori list of codes that was developed based on the research questions. The start list included, for example, harms and benefits of testing and expected outcomes of testing. During the coding process, other codes that were not on the start list emerged from the data and were included, for example, to capture the personal emotional experience of the diagnostic imaging process. When new codes emerged, all data were recoded to search for further instances of the meaning captured by that code.

Once all data were coded, the codes were organized into related areas to construct descriptive themes. In this process, the reviewer looked for similarities and differences among codes and grouped together similar codes. Once descriptive themes were identified, the reviewer wrote a summary of the results across the studies organized by each theme. A group discussion then took place, involving other researchers with experience in qualitative research, to review and discuss the emergent themes and identify further analytic ideas.

Preliminary results were presented to the CADTH Health Technology Expert Review Panel (HTERP), in a manner similar to peer debriefing. This impartial, multidisciplinary panel helped to raise new and relevant areas to consider in the final analysis. For example, the panel discussed the challenge of using a shared decision-making model or obtaining informed consent, given the urgent circumstances when diagnosing PE. Also, the finding that some patients preferred to have emotional support from another person during the imaging process led to a discussion of the perspectives of health care providers on the feasibility of implementing routines that would meet the emotional and information needs of patients and their family members. The panel also questioned the strength of the link between the reported results and the original research questions, following which, the data were revisited to assess the credibility of the results, and subsequent revisions were made to increase the clarity of those linkages.

The results presented below represent a synthesis that remains close to the original results of the included studies, with minimal interpretation.

Summary of Evidence

Quantity of Research Available

A total of 1,891 citations were identified in the literature search. Following screening of titles and abstracts by one reviewer, 1,858 citations were excluded, and 34 potentially relevant articles from the electronic search were retrieved for full-text review. Of these potentially relevant articles, 27 were excluded, as they did not fit the study criteria, and the remaining seven were selected for inclusion in this report. All seven studies are relevant to the second research question.284290 No eligible studies were identified that addressed the first research question. The study selection process is presented in a PRISMA flow chart (Appendix 29).

Summary of Study Characteristics

Study Design

Seven studies of various designs were included as relevant to this report (Appendix 30). One was a systematic literature review,289 two used a phenomenological design,287,290 while four did not report a study design284286,288 and appeared to follow a descriptive approach with no theoretical orientation.

Place and Time of Studies

The systematic review was conducted in Australia,289 while three primary studies were conducted in Sweden,284,287,290 two in the UK,285,286 and one in the US.288 Two studies were published in 2014284,286 and one study each in 2015,288 2013,287 2012,285 2011,289 and 2006.290

Patient Population

A range of patient populations and experiences with diagnostic imaging technologies were covered in the studies included in this review. One study included women and their partners who had experienced a near-miss event in childbirth (defined as “severe maternal illnesses which, without urgent medical attention, would have led to a mother’s death”).286 Of the 35 women included in this study, five women had experienced a PE. Three studies included adults who presented at the MRI department to undergo a scan where the head was to be fully inside the tunnel.284,287,290 One study included adults who had undergone a SPECT-CT examination,285 and another study included adults who were diagnosed with colorectal, breast, testicular, thoracic, and lung cancers, and who underwent diagnostic imaging examinations that involved the use of ionizing radiation.288 The systematic review included literature describing the patient experience of high-technology imaging.289

Types of Technologies

Three studies included patients who underwent MRI,284,287,290 one included individuals who had undergone SPECT-CT,285 and one study explored perspectives on a range of strategies to diagnose cancer, including X-ray, CT, PET mammography, and MRI.288 The study including women who experienced near-miss events in childbirth did not report the types of technologies used in their diagnosis.286 The focus of the systematic review was on high-technology imaging, including MRI, CT, PET, and SPECT; however, each of the five included studies focused on either MRI or CT.289

Summary of Critical Appraisal

Overall, studies included in this report are of moderate to high quality. There are, however, a few exceptions, described later. All studies were well conducted and demonstrated congruence between the research methods and objectives. A summary of the strengths and limitations is included below, and details are available in Appendix 31.

Primary Studies

Each of the six included primary studies provided a clear statement of the research objectives or purpose, and all study objectives fit well with a qualitative inquiry and synthesis. Four studies did not report a study design, although they appeared to follow a qualitative descriptive design, which was appropriate for the descriptive intentions of the study.284286,288 Two primary studies described using a phenomenological approach, thereby applying a stronger theoretical orientation to guide data collection, analysis, and interpretation.287,290

Three of the six primary studies identified using a purposive sampling strategy,286288 which is appropriate for qualitative research of all designs. No mention, however, was made within any primary study report regarding data saturation. It is therefore unclear whether the final samples could represent the diversity of participants’ experiences. The final three primary studies284,285,290 made no mention of a particular sampling strategy; however, one did report including men and women of different ages and with different experiences of their MRI scans.290 This description therefore appears to follow a maximum variation strategy, which is appropriate to ensure that a broad range of experiences can be represented.

Both focus groups and interviews were used across the included primary studies. Four studies described using semi-structured interviews,284287 and one used focus groups and an interview guide.288 In each case, the approach allowed a consistent set of topics to be raised with all individual and focus group participants. One study used unstructured interviews to allow the issues experienced by participants to emerge.290 Three studies reported that the interviews were conducted by a researcher; however, none of the studies discussed how rapport was built with the participants, thus making it unclear whether a rapport was built at all.286,287,290 The five studies that used interviews as their data-collection method, identified using content analysis,284,285 a systematic text-condensation approach,287 a qualitative interpretive approach,286 and a hermeneutic phenomenological analysis290 to analyze their data. The study using focus groups described an iterative, thematic, textual-analysis process, which allowed for the emergence of inductive themes.288 All six studies described strategies to enhance rigour; these primarily focused on reliability in coding, including coding by more than one researcher and consensus meetings among the researchers with regard to the final code list.284288,290

Reflexivity refers to the process of systematically reflecting and collecting data throughout the research process to determine the potential effect of the researcher on the data collected and analyzed. It is important to consider reflexivity, as it is aimed at the threat to the confirmability of qualitative research results. One of the six primary studies detailed the researchers’ backgrounds and efforts to put aside personal beliefs during data collection and analysis,284 while the remaining five were silent on the issue.285288,290 Further, the same study included a discussion of the relationship between the researcher and the participants, and the researcher and the topic,284 while, again, the remaining five were silent.285288,290

Systematic Review

There was one systematic review that met the eligibility criteria for this review.289 The authors of this review outlined a clear objective for their study that is well suited to a systematic review of primary qualitative research studies. The research question falls clearly from the objective, and the eligibility criteria are congruent with each. A comprehensive literature search was conducted that included both grey and published literature, with no date limits. The search was, however, limited to articles published in the English language, which means relevant studies published in other languages would not have been identified. Quality appraisal of all included studies was conducted using the Joanna Briggs Institute–Qualitative Assessment and Review Instrument (JBI-QARI) tool and was conducted independently by two reviewers, which enhanced the reliability of the assessments. It is unclear, however, whether citation screening and study identification were conducted by more than one reviewer, which raises the potential for some studies to be inappropriately classified. Similarly, it is unclear whether data extraction and analysis involved more than one reviewer. In particular, for data synthesis, involving more than one reviewer would help to ensure reliability in coding and ultimately credibility in the emergent synthesis. A detailed list of 11 synthesized results are presented, however, alongside all 127 result statements that were extracted from the primary study reports, which allows for an assessment of the comprehensiveness of the synthesized results. Based on this assessment, it appears that the emergent synthesis dependably reflects the primary study results. An important limitation of this review is the authors’ failure to speak to any efforts seeking to enhance rigour within the review process. For example, no description was provided of the researchers’ background and their relationship to the topic, and no other attempts were made to remain reflexive and aware of their influence on data collection, synthesis, or interpretation. Similarly, no mention was made of team meetings or peer debriefing, or the maintenance of an audit trail. While it is unclear whether strategies to enhance rigour were not conducted or simply not reported, it remains possible that the synthesis lacks credibility as a result.


Perceived Benefits and Risks of Diagnostic Imaging

All but one of the studies included participants who spoke to the perceived benefits of a range of diagnostic imaging techniques.284,285,287290 In one study, some participants even tied their lives to these technologies stating “I might not be here [without that CT scan]” or “I owe my life to an X-ray” (p. 5).288

In most cases, however, benefits were articulated in terms of the technology’s noninvasive potential to peer within288 and deliver images capable of mapping out current or prospective health concerns. Strand et al.284 point to one individual who could find nothing positive about their experience with an MRI scan for neoplasm metastases in their spine, aside from it offering the potential to “get help and know what can be done” (p. 194). Whether the resulting images indicated a positive or negative diagnosis, this ability to “know” was often perceived as valuable in and of itself,287 so much so that several individuals indicated that reminding themselves of this potential helped to mitigate varied levels of discomfort experienced during their actual examination.284,287,288,290

While these perceived benefits of imaging technologies tended to be discussed more often than risks, Thornton et al.’s288 study with individuals navigating cancer care from a variety of perspectives (i.e., lung cancer screening, chemotherapy for stage IV colorectal carcinoma, thoracic cancer survivorship) also explored perceptions of risk. The cumulative ionizing radiation risks of repeated CT scans during chemotherapy treatments, the potential for kidney damage from intravenous contrast material, or safety concerns about excretion of radioactive tracers weighed heavily.288 For some individuals in Nightingale et al.’s study on experiences with cardiac SPECT-CT, perceptions of risks emanated from an association of terms like “nuclear” with “atom bombs.”285 Nonetheless, for both studies, individuals expressed that the value of imaging strategies far outweighed any long-term risks of ionizing radiation.285,288

Experience of Diagnostic Testing

The primary themes to emerge from the literature regarding patient or partner experience with diagnostic imaging were identified as “threats to self-control,” “the importance of family or staff,” the importance of “clear and honest communication,” and “long-term psychological effects.” While perceived benefits and risks of undergoing imaging revolved around the post-examination experience, this section focuses much more on “heat-of-the-moment” experience. As individual interviews for all of the primary studies (except Hinton et al.286) occurred on the same day as examination, it is possible to understand them as presenting a visceral glimpse into what it could be like on the examining table.

Threat to Self-Control

Some patients stated that the experience of undergoing diagnostic imaging examinations challenged their self-control and their ability to manage the situation.287,289,290 Patients attributed this feeling of loss of control to being isolated, confined, and dependent on others, and they also reported a loss of control over their thoughts and reactions.289,290 In one study, outpatients undergoing an MRI indicated that this feeling of loss of control started before even coming into the MRI department.290 Some stated that the sight of the MRI machine (often noted as one of the more claustrophobia-provoking imaging technologies due to the elongated and narrow tunnel) triggered the feeling. One participant described feeling calm before the scan, but that the procedure triggered stressful memories of being buried in a previous accident, which was unexpected.290 One author reported that the variation in experiences highlights the need for individualized support to manage feelings of threats to self-control.290

While no specific imaging technologies are discussed in Hinton et al.’s study on near-miss events or “severe life-threatening obstetric complications” during childbirth286 the pregnant patient’s partners likewise described feeling out of control watching their partner in the emergency situation. Unable to help on their own and feeling powerless, these partners often described the experience as shocking and distressing.286 Because of the nature of the emergency situation, partners also described feeling excluded by the health care team as the team worked to save the patient.286

Importance of Support from Family or Staff

Similar to the way in which the spatial confines of these technologies had the ability to pull at one’s sense of self-control, several individuals indicated feeling unmoored from reality both during and leading up to their examination. Whether causing the perception of time to slow285,287 or ushering the individual to “another world,”290 the unfamiliarity of the setting could increase anxiety or fear for some people. In an extreme example, Tornqvist et al. noted some individuals associated their MRI scan with being in a coffin or “lying almost as for cremation”(p. 957).290 Perhaps little more than a passing comment, by drawing upon these spaces reserved for dead and inert bodies as a means of explanation, some participants seem to signal a form of isolation or reality separated from the living.

In order to be drawn back, several individuals spoke to the importance of knowing someone was sharing this space with them.284,285,287,290 Again in Tornqvist et al., reminiscing on his own experience, one participant said, “My wife is there with me now. I can feel her hand on my leg, and then I know there is someone, she is there. It’s an enormous support” (p. 958).290 By simply laying a hand on her husband’s leg, this woman was able to pull him back and help him remain calm. For others, radiographers tended to play the role of anchor. Whether counting down remaining time aloud,285 providing an emergency buzzer in case the participant needed to prematurely end the exam,284,287,289,290 or simply reminding the participant that they were there,290 radiographers could act as mediators between reality and the individual.

Another form of support, this one before the actual examination, took the form of spending time customizing the experience for each participant. Individuals in Strand et al.’s study note this customizability as valuable due to the potentially painful positions required in MRI scanning for potential neoplasm metastasis in the spine.284 By providing pillows or thicker mattresses to suit individual needs, radiographers were able to add a certain level of humanity to such a surreal experience.

Support appears to enable patients to relax during the procedure and increase their feeling of control over the situation.290 There also appears to be a link between threat to self-control and the need for support; those feeling a greater threat to self-control were more likely to need support from others, and conversely the availability of support could improve the ability to cope.290

For some families who had experienced near-misses in childbirth, the pregnant patient’s partners similarly acknowledged the importance of family and staff support.286 One husband, telling the story of his family’s near-miss, recounted the empathy shown by a staff member after their daughter had been delivered. As he held his daughter and wife who was “down for the count,” he remembered the way in which the anesthetist “put her arm around [me] and she was stroking [my wife’s] hair as well” (p.5)286 Although unable to completely resolve the partner’s feelings of powerlessness or distress throughout the imaging and intervention processes (as discussed in the previous section), showing a keen awareness of these feelings was experienced as both appreciated and calming.

Clear, honest communication from medical staff was highly valued by patients and their partners

Support could also come in the form of clinicians or radiographers taking time to talk about the examination before the actual procedure.285,287289 While patients in Carlsson and Carlsson’s study reported being satisfied with the written information they received regarding their upcoming MRI scan, the same patients emphasized the importance of reviewing this information in person, as several realized, once undergoing the examination, that they had not fully understood the written information.287

Nightingale et al.285 similarly report that patients appreciated pre-appointment conversations with their radiologists. For those patients who were quite anxious to even attend the imaging procedure, this background and being on a first-name basis with the radiographers was beneficial.

The synthesized findings from the systematic review by Munn and Jordan289 indicate that being aware of what to expect during a MRI scan (i.e., the sound during MRI and invasive aspects of the scan) helped patients to deal with the anxiety they experience during the test. Where participants reported receiving information from their health care providers, some also indicated being dissatisfied with it and turning to self-directed Internet searches for further information.288,289 In particular, participants in the systematic review289 as well as a further primary study288 expressed a desire for information regarding the availability of different diagnostic imaging options and the risks and benefits associated with each.

Several participants in the study by Thornton et al.288 reported benefit–risk discussions about ionizing radiation from medical imaging as rare and seldom initiated by clinicians. While some indicated this would be a valuable conversation, perceptions of the importance seemed to vary, based on stage of illness and personal feelings toward imaging technologies. For instance, patients with advanced-stage cancer reported preferring to leave all decision-making responsibility about imaging tests to their physician during active phases of therapy, whereas others had low interest in shared decision-making processes when they understood the importance of an imaging test.288 Several participants indicated a lesser need for discussion of the benefits and risks of diagnostic imaging because they had trust and the confidence that their physician or hospital would protect them by using the best imaging equipment and protocols.288

Although, in each study, patients expressed the need for clear communication and information, the circumstances or local format of the imaging procedures may prevent optimal communication or shared decision-making. Variation in hospital or clinic procedures, and the circumstances of the suspected PE, could account for why some patients felt satisfied and others did not.

Although the partners of women facing imaging for near-misses understood that it was an emergency situation and information needed to be moved along quickly, sometimes without their knowledge, they explained that having clear and honest communication from the health care professionals made a difference in their experience.286 For instance, one partner recalled walking into the intensive care unit where his wife was and thinking that she was dead for an hour before being told that she was on life support and would be fine.286

Long-Term Emotional Effects

Psychological distress, including anxiety, uncertainty, dread, and fear that lasted until the results of the scan were known, was also expressed in two studies.288,289 In Hinton et al.’s study on near-miss events in childbirth, many of the partners and patients were interviewed several years after the emergency experience, and some reported suffering from posttraumatic stress disorder as a result of their overall experience. Others explained they were unable to re-visit the past experience through recollections with their family members or clinician.286

Summary of Findings

Of those individual experiences explored within the studies included in this review, several spoke to the ways in which the power of these diagnostic technologies to map out both current and prospective health concerns helped to mitigate various levels of discomfort felt throughout their respective exam. Nonetheless, however powerful this prognostic potential “to know” may be, many participants still framed their experience in terms of their concerns with self-control, isolation, and lack of preparation.

Self-control could be placed under threat at any point throughout the imaging process. Whether beginning somewhere during the move toward the imaging room or rising and falling throughout the actual examination, these feelings of powerlessness could heighten levels of anxiety or discomfort for both patients and their caregivers (or partners). At times, this discomfort could be expressed through metaphors related to death, dying, or other forms of extreme alienation. More than merely signalling a basic sense of isolation, the use of these extreme metaphors seems to indicate feelings of disconnection or unmooring from reality.

With that in mind, physical reminders of the presence of loved ones or more verbal or visual reminders of a radiographer’s presence could serve as anchors throughout the imaging process and help alleviate related concerns. Similarly, although potentially irrelevant to the emergency department diagnostic process for PE, clear lines of communication between individual and clinicians before the examination could help to alleviate these concerns. While reading material was noted as helpful when preparing for an upcoming scan, many participants felt that spending time with a clinician before undergoing the actual examination would provide a greater level of comfort.

Copyright © 2018 Canadian Agency for Drugs and Technologies in Health.

The copyright and other intellectual property rights in this document are owned by CADTH and its licensors. These rights are protected by the Canadian Copyright Act and other national and international laws and agreements. Users are permitted to make copies of this document for non-commercial purposes only, provided it is not modified when reproduced and appropriate credit is given to CADTH and its licensors.

Except where otherwise noted, this work is distributed under the terms of a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International licence (CC BY-NC-ND), a copy of which is available at http://creativecommons.org/licenses/by-nc-nd/4.0/

Bookshelf ID: NBK538860


Other titles in this collection

Recent Activity

Your browsing activity is empty.

Activity recording is turned off.

Turn recording back on

See more...