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Patient perspectives and experience on the diagnostic pathway of lung cancer: A qualitative study.

ABSTRACT: Objectives:Lung cancer is one of the most common types of cancer, with high mortality rate and a significant burden of symptoms. It is therefore important to assess patients' perceived quality of life during the diagnostic process and treatment. Knowledge of and attention to patients' perspectives, experiences, and expectations in relation to lung cancer diagnostic pathways is limited. The aim of the study is to contribute with patients' and relatives' experiences with and their assessment of the quality of a hospital-based lung cancer diagnostic pathway. Methods:A qualitative study was conducted, comprising participant observation with 20 patients and semi-structured interviews with further 19 patients referred to the Lung Cancer Package, which initiates a fast track diagnostic pathway in a hospital setting. Data were obtained over a period of 9?months and analysed in collaboration with an interdisciplinary team of health professionals. The purpose was to further develop existing management strategies of the fast track diagnostic pathway based on patient's perspectives. Results:Patients associated the fast track diagnostic pathway with high levels of anxiety due to the immediate risk of a lung cancer diagnosis. Although patients experienced the fast track programme as very challenging, they still wanted to move through the diagnostic pathway as quickly as possible. The patients expressed a need for support from relatives and repeatedly required information in multiple formats from health professionals throughout the diagnostic pathway. Conclusions:The study provided insight into the need for developing the fast track diagnostic pathway with a focus on patient anxiety, network involvement, and information strategies. The results qualified clinical practice with an increased focus on managing patients' anxiety, raised awareness to involve relatives in the diagnostic process, and relaying information in dialogue with patients and their relatives, including management strategies to support patients through diagnostic investigations in the fast track programme.

SUBMITTER: Christensen HM

PROVIDER: S-EPMC7222647 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Patient perspectives and experience on the diagnostic pathway of lung cancer: A qualitative study.

Christensen Helle Marie HM Huniche Lotte L

SAGE open medicine 20200506

<h4>Objectives</h4>Lung cancer is one of the most common types of cancer, with high mortality rate and a significant burden of symptoms. It is therefore important to assess patients' perceived quality of life during the diagnostic process and treatment. Knowledge of and attention to patients' perspectives, experiences, and expectations in relation to lung cancer diagnostic pathways is limited. The aim of the study is to contribute with patients' and relatives' experiences with and their assessme ...[more]

PMID: 32435485

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Project description:BackgroundIn the incidental pulmonary nodule and breast cancer screening settings, high-quality patient-centered communication can improve adherence to evaluation and mitigate patient distress. Although guidelines emphasize shared decision-making before lung cancer screening, little is known about patient-clinician communication after lung cancer screening.Research questionHow do patients and clinicians perceive communication and results notification after lung cancer screening, and are there approaches that may mitigate or exacerbate distress?Study design and methodsWe conducted interviews and focus groups with 49 patients who underwent lung cancer screening in the prior year and 36 clinicians who communicate screening results (primary care providers, pulmonologists, nurses), recruited from lung cancer screening programs at 4 hospitals. We analyzed transcripts using conventional content analysis.ResultsClinicians and patients diverged in their impressions of the quality of communication after lung cancer screening. Clinicians recognized the potential for patient distress and tailored their approach to disclosure based on how clinically concerning they perceived results to be. Disclosure of normal or low-risk findings usually occurred by letter; clinicians believed this process was efficient and well received by patients. Yet many patients were dissatisfied: several could not recall receiving results at all, and others reported that receiving results by letter left them confused and concerned, with little opportunity to ask questions. By contrast, patients with larger nodules typically received results during an immediate phone call or clinic visit, and both patients and clinicians agreed that these conversations represented high-quality communication that met patient needs. Regardless of their cancer risk, patients who learned their results in a conversation appreciated the opportunity to discuss both the meaning of the nodule and the evaluation plan, and to have their concerns addressed, preempting distress.InterpretationTension exists between clinicians' interest in efficiency of results notification by letter in low-risk cases and patients' need to understand and be reassured about screening results, their implications, and the plan for subsequent screening or nodule evaluation-even when clinicians did not perceive results as concerning. Brief conversations to discuss lung cancer screening results may improve patient understanding and satisfaction while reducing distress.

Project description:BACKGROUND:Guidelines recommend, and Medicare requires, shared decision-making between patients and clinicians before referring individuals at high risk of lung cancer for chest CT screening. However, little is known about the extent to which shared decision-making about lung cancer screening is achieved in real-world settings. OBJECTIVE:To characterize patient and clinician impressions of early experiences with communication and decision-making about lung cancer screening and perceived barriers to achieving shared decision-making. DESIGN:Qualitative study entailing semi-structured interviews and focus groups. PARTICIPANTS:We enrolled 36 clinicians who refer patients for lung cancer screening and 49 patients who had undergone lung cancer screening in the prior year. Participants were recruited from lung cancer screening programs at four hospitals (three Veterans Health Administration, one urban safety net). APPROACH:Using content analysis, we analyzed transcripts to characterize communication and decision-making about lung cancer screening. Our analysis focused on the recommended components of shared decision-making (information sharing, deliberation, and decision aid use) and barriers to achieving shared decision-making. KEY RESULTS:Clinicians varied in the information shared with patients, and did not consistently incorporate decision aids. Clinicians believed they explained the rationale and gave some (often purposely limited) information about the trade-offs of lung cancer screening. By contrast, some patients reported receiving little information about screening or its trade-offs and did not realize the CT was intended as a screening test for lung cancer. Clinicians and patients alike did not perceive that significant deliberation typically occurred. Clinicians perceived insufficient time, competing priorities, difficulty accessing decision aids, limited patient comprehension, and anticipated patient emotions as barriers to realizing shared decision-making. CONCLUSIONS:Due to multiple perceived barriers, patient-clinician conversations about lung cancer screening may fall short of guideline-recommended shared decision-making supported by a decision aid. Consequently, patients may be left uncertain about lung cancer screening's rationale, trade-offs, and process.

Project description:Introduction: Lung cancer is the deadliest and most prevalent cancer worldwide. Lung cancer treatments have different characteristics and are associated with a range of benefits and side effects for patients. Such differences may raise uncertainty among drug developers, regulators, payers, and clinicians regarding the value of these treatment effects to patients. The value of conducting patient preference studies (using qualitative and/or quantitative methods) for benefits and side effects of different treatment options has been recognized by healthcare stakeholders, such as drug developers, regulators, health technology assessment bodies, and clinicians. However, evidence-based guidelines on how and when to conduct and use these studies in drug decision-making are lacking. As part of the Innovative Medicines Initiative PREFER project, we developed a protocol for a qualitative study that aims to understand which treatment characteristics are most important to lung cancer patients and to develop attributes and levels for inclusion in a subsequent quantitative preference survey. Methods: The study protocol specifies a four-phased approach: (i) a scoping literature review of published literature, (ii) four focus group discussions with stage III and IV Non-Small Cell Lung Cancer patients, (iii) two nominal group discussions with stage III and IV Non-Small Cell Lung Cancer patients, and (iv) multi-stakeholder discussions involving clinicians and preference experts. Discussion: This protocol outlines methodological and practical steps as to how qualitative research can be applied to identify and develop attributes and levels for inclusion in patient preference studies aiming to inform decisions across the drug life cycle. The results of this study are intended to inform a subsequent quantitative preference survey that assesses patient trade-offs regarding lung cancer treatment options. This protocol may assist researchers, drug developers, and decision-makers in designing qualitative studies to understand which treatment aspects are most valued by patients in drug development, regulation, and reimbursement.

Project description:BackgroundPatients diagnosed with low-risk prostate cancer (PCa) are confronted with a difficult decision regarding whether to undergo definitive treatment or to pursue an active surveillance protocol. This is potentially further complicated by the possibility that patients and physicians may place different value on factors that influence this decision. We conducted a qualitative investigation to better understand patient and physician perceptions of factors influencing treatment decisions for low-risk PCa.MethodsSemi-structured interviews were conducted among 43 racially and ethnically diverse patients diagnosed with low-risk PCa, who were identified through a population-based cancer registry, and 15 physicians who were selected to represent a variety of practice settings in the Greater San Francisco Bay Area.ResultsPatients and physicians both described several key individual (e.g., clinical) and interpersonal (e.g., healthcare communications) factors as important for treatment decision-making. Overall, physicians' perceptions largely mirrored patients' perceptions. First, we observed differences in treatment preferences by age and stage of life. At older ages, there was a preference for less invasive options. However, at younger ages, we found varying opinions among both patients and physicians. Second, patients and physicians both described concerns about side effects including physical functioning and non-physical considerations. Third, we observed differences in expectations and the level of difficulty for clinical conversations based on information needs and resources between patients and physicians. Finally, we discovered that patients and physicians perceived patients' prior knowledge and the support of family/friends as facilitators of clinical conversations.ConclusionsOur study suggests that the gap between patient and physician perceptions on the influence of clinical and communication factors on treatment decision-making is not large. The consensus we observed points to the importance of developing relevant clinical communication roadmaps as well as high quality and accessible patient education materials.

Project description:BackgroundSince the onset of the COVID-19 pandemic, virtual care solutions have been rapidly adopted across the country to provide safe, quality care to diverse patient populations. The objective of this qualitative case study was to understand patient and caregiver experiences of virtual care to identify barriers and gather suggestions to address them.MethodsIn this patient-oriented project, we sought to understand gaps in virtual care experienced by patients and caregivers, using virtual focus groups. With the assistance of a patient research liaison, we engaged 2 patient partners as full partners; they participated in study conception, data collection, data analysis and knowledge translation. Recruitment was done through email by disseminating the study poster to 30 community organizations and health units in Ontario and British Columbia. We conducted a constructivist, qualitative study guided by grounded theory methodology. One researcher employed in-vivo coding, followed by axial coding with focus group participants, followed by selective coding with the study team. The study took place from November to December 2020.ResultsWe conducted 6 focus groups with 13 patients and 5 caregivers. The analysis resulted in 6 major themes and 17 minor themes. Key findings showed that barriers related to access to technology and Internet, language and cultural differences were challenges to virtual care. Participants identified special considerations surrounding caregiver and family involvement; privacy, consent and confidentiality; and the patient-physician relationship. Participants suggested that technology and the Internet be universally accessible and that virtual care modalities be integrated (e.g., consolidated patient portal) to improve virtual care.InterpretationThere are multiple patient-identified barriers to accessing virtual care in Canada; patients can provide insights into ways to address these barriers. Future research should include robust patient engagement to explore ways to address these challenges and barriers to ensure that virtual care can be equitable, accessible and safe for all users.Plain language summaryAlthough virtual care has been rapidly adopted and scaled up in health care institutions across the country, few improvements informed by patient and caregiver experiences have been made. Driven by concerns expressed by patient partners, our study team undertook a patient-partnered qualitative study to understand the barriers of virtual care from the perspectives and experiences of patients and caregivers. Our study team created the interview guide drawing from our previous patient-oriented qualitative studies and designed an orientation package to provide resources related to the focus groups and to introduce participants to the study team. Drawing from local health teams, clinics and patient advisory groups, the study team recruited 13 patients and 5 caregivers to participate in 6 focus group interviews. An analysis based on grounded theory was undertaken, with participation from both the study team and participants. Lack of access to technology or Internet and language barriers were determined to be the primary challenges in virtual care. Special considerations to caregiver and family involvement, privacy and confidentiality, as well as the patient-physician relationship were considered priorities to improving access to virtual care. Participants offered recommendations and potential solutions to address barriers and challenges in virtual care, which can serve to encourage large-scale policy and programmatic changes in patient-centred ways.

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Patient perspectives and experience on the diagnostic pathway of lung cancer: A qualitative study.

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Patient perspectives and experience on the diagnostic pathway of lung cancer: A qualitative study.

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