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.

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.

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

Summary of Evidence

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 design^{284–286,288} 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 2014^284,286 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

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.^{284–286,288} 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,^286–288 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 studies^284,285,290 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,^284–287 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.^{284–288,290}

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.^{285–288,290} 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.^{285–288,290}

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.^{284,285,287–290} 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.