Qualitative Analysis of Perspectives on Lung Transplant among People with Cystic Fibrosis.

RATIONALE: Lung transplant (LTx) is a potentially life-saving treatment option for individuals with advanced cystic fibrosis (CF), but more people with CF (PwCF) and advanced lung disease die each year than undergo transplant in the United States. Little is known about these individuals' LTx information needs and factors influencing their decision-making process related to transplant. OBJECTIVES: To examine PwCF's experiences with, and preferences for, provision of LTx information; to identify transplant information needs that CF clinicians are well-positioned to address. METHODS: We performed semi-structured qualitative interviews in two separate cohorts: PwCF without LTx and PwCF with LTx between July 2019 and June 2020. Questions focused on awareness and knowledge about LTx, perspectives related to communication about transplant in CF clinic, and experiences with LTx. Thematic analysis was utilized to organize the qualitative data. Exemplar quotes were chosen to illustrate domains that emerged pertaining to the research objectives. RESULTS: Fifty-five PwCF, 35 without LTx and 20 with LTx, participated. One-third of PwCF without LTx had normal or near-normal lung function. Key common domains among PwCF with and without LTx were identified including information needs, connections with LTx recipients, and conversations with CF clinicians. For PwCF with and without transplant, concrete information needs were identified: success or survival, social support, surgery, recovery/pain, and quality of life post-transplant. The importance of connecting with LTx recipients to hear their stories and experiences was emphasized by both PwCF with and without transplant. Important considerations for timing and content of discussions with CF clinicians were identified, including having information presented early (before LTx referral is needed) and in limited detail at first. PwCF without LTx wanted to understand how LTx was relevant to them, with a focus on the unique experience of CF. PwCF with LTx emphasized the need for a centralized resource for LTx information. CONCLUSIONS: The findings provide content areas for CF clinicians to focus on as they proactively initiate conversations about LTx and support the development of tools to aid in discussions about LTx for PwCF.

Take on transplant: human-centered design of a patient education tool to facilitate informed discussions about lung transplant among people with cystic fibrosis.

OBJECTIVE: Lung transplant (LTx) saves lives in cystic fibrosis (CF). However, many potential candidates express uncertainty about LTx and die before receiving this treatment. CF guidelines recommend LTx education and clinical discussions well before the need for LTx arises, but limited patient resources exist. MATERIALS AND METHODS: We engaged people with CF and CF physicians in human-centered design of "Take On Transplant" (TOT), a web-based education tool to prepare patients for LTx discussions. Across 3 phases, needs assessment, design groups, and iterative user testing of TOT, we refined TOT from wireframe prototypes, to an interactive website, to a fully functional intervention ready for clinical trials. RESULTS: Fifty-five people with CF and 105 physicians identified information needs to prepare for LTx discussions. Design groups (n = 14 participants) then established core requirements: didactic education ("Resource Library"), patient narratives ("CF Stories"), frequently asked questions ("FAQ"), and self-assessment to tailor content ("My CF Stage"). Iterative usability testing (n = 39) optimized the design of CF Stories and prototype layout. We then developed the TOT website and demonstrated feasibility and preliminary efficacy of use through 2-week field testing (n = 9). DISCUSSION: Our human-centered design process provided guidance for educational tools to serve the evolving needs of potential LTx candidates. Our findings support the process of patient deliberation as a foundation for shared decision-making in CF, and inform educational tools that could potentially translate beyond LTx. CONCLUSION: TOT fills a critical gap in preparing people with CF for shared decision-making about LTx and may serve as a model for educational tools for other preference-sensitive decisions.

Usability preferences of people living with cystic fibrosis about a lung transplant education website.

People living with cystic fibrosis (CF) need educational resources about lung transplant prior to engaging in shared decision making with their medical providers. We conducted a usability study to elicit preferences of people living with CF about how didactic and experiential content could be used in an educational resource to learn about lung transplant. We created two prototypes with different design features that participants used in a scenario-based task and evaluated using the System Usability Scale. We interviewed participants and analyzed the data to understand their preferences for educational content and design. Study participants indicated that didactic resource articles were important to understanding their illness trajectory, while experiential patient stories supported fear reduction and knowledge discovery. When learning about lung transplant participants stated a preference to control the amount of information they receive and preferred a combination of didactic and experiential knowledge.

Assessing Practices, Beliefs, and Attitudes about Palliative Care among People with Cystic Fibrosis, Their Caregivers, and Clinicians: Results of a Content Analysis.

Background: Individuals with cystic fibrosis (CF) experience symptoms affecting quality of life and may benefit from palliative care (PC). Objectives: To present results of content analysis from open-ended survey questions assessing knowledge and experiences with PC among CF stakeholders. Design, Setting, Subjects: Online surveys were sent to CF stakeholders through CF-specific listservs predominantly in the United States. Measurements: Responses to five open-ended questions about CF PC-delivery, health care provider training, and lung transplant-underwent content analysis. Responses were coded using NVivo12 Software™. Results: Forty-eight CF adults, 59 caregivers, and 229 providers responded to the open-ended survey questions. Analysis showed 5 primary categories related to CF PC: (1) stakeholder perceptions of PC for CF, (2) delivering PC to people with CF, (3) conversations about PC for CF, (4) perceptions that PC services are underutilized for people with CF, and (5) beliefs that PC services are critical for people with CF considering or pursuing lung transplant. Analysis showed variation among and within groups in defining PC for CF, when, and how to deliver it. Many respondents felt PC was underutilized in CF. Most saw PC as particularly important when considering lung transplant, managing anxiety around transplant, and for goals of care discussions. Some believed PC and lung transplant were mutually exclusive. Conclusion: Respondents felt PC is underutilized for CF, and that people with CF may miss out on the benefits of PC. Among stakeholders, respondents felt people with CF would benefit from access to primary and secondary PC services.

Unplanned Admission to the ICU: A Qualitative Study Examining Family Member Experiences.

BACKGROUND: Transfers to the ICU from acute care are common, and it is essential to understand how family members of critically ill patients experience these transitions of care. RESEARCH QUESTION: Can we enhance our understanding of family members' experiences during hospital stays complicated by a patient's unplanned admission to the ICU? STUDY DESIGN AND METHODS: Qualitative interviews were conducted with family members of patients were transferred from acute care to the ICU at a level I trauma center in Seattle, WA (n = 17). To organize data, we used thematic analysis, coupled with a validated conceptual model of clinician-surrogate communication. RESULTS: Drawing from a validated conceptual model, we used two domains to frame our coding: "information processing" and "relationship building." Within information processing, we coded information disclosure, sensemaking, and expectations; within relationship building, we coded emotional support, trust, and consensus and conflict. Family members wanted timely, accurate information about the patient's condition both during and after transfer. An unplanned ICU admission was a stressful event for family members, who looked to clinicians for emotional support. Developing trust was challenging, because family members struggled to feel like integrated members of the medical team when patients transitioned from one setting to another. INTERPRETATION: Family of patients who experience an unplanned ICU admission want high-quality communication both during and after a patient's transfer to the ICU. This communication should help family members make sense of the situation, address unmet expectations, and provide emotional support. In addition, interventions that foster family-clinician trust can help family members feel like integrated members of the care team as they face the challenge of navigating multiple different environments within the hospital.

Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members.

BACKGROUND: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams. METHODS: CF care team members ("clinicians"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF clinicians to provide aspects of PC using a five-point scale ("poor" to "excellent"). Median ratings were compared between groups. RESULTS: A total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as "very good" at basic pain assessment and "good" at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P < .0001), basic depression assessment (P < .001), and discussing transplant, advance directives, end of life, code status, and hospice (all P < .0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P < .001), end of life (P = .006), advance directives (P < .001), code status (P = .012), and hospice (P = .016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training. CONCLUSIONS: Discrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians' more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.

Palliative Care Needs of Individuals with Cystic Fibrosis: Perspectives of Multiple Stakeholders.

Background: Studies suggest palliative care may be different in cystic fibrosis (CF) than in other conditions. To provide quality palliative care to individuals with CF, unique needs must be understood. Objective: To examine perceptions of how palliative care may be different in CF, top palliative needs of individuals with CF, and barriers to palliative care in CF. Methods: Online surveys with closed- and open-ended questions about palliative care needs were administered to multiple stakeholders in CF care, including adults with CF, caregivers of individuals with CF, and CF care team members from U.S. centers. We used descriptive statistics to report survey findings. Results: A total of 70 adults with CF, 100 caregivers, and 350 care team members completed surveys. While care team members reported they introduce palliative care to patients a majority of the time, adults with CF and caregivers rarely recalled learning about it. Very few reported having seen a palliative care specialist. A majority of participants reported that palliative care is valuable in CF care. Over 80% of participants felt palliative care is different in CF, most often citing the unpredictable disease course. Top palliative care needs identified include emotional support, emotional symptom management, and communication about treatment decisions. Major barriers to palliative care identified include perception that it is for dying people and lack of CF care team knowledge and training in palliative care. Conclusions: Participants felt palliative care is valuable in CF and identified many palliative care needs, and also barriers that can be addressed with education and training. Our findings will be used to develop interventions targeting specific needs and inform guidelines to enhance provision of palliative care in CF.

Addressing lung transplant with adults with cystic fibrosis: A qualitative analysis of patients' perspectives and experiences.

Referral for lung transplantation is a complex process that typically begins with a discussion in cystic fibrosis (CF) clinic. We performed a secondary analysis of interviews conducted at the University of Washington CF Clinic as part of a study of unmet palliative care needs, June 2015 - January 2016, among adults with moderate-to-severe CF-related lung disease. Content analysis methods were used to identify themes related to discussion of lung transplant in CF clinic. Thirty-two of 48 interviews (67%) addressed transplant. An individual's willingness to discuss transplant was not necessarily related to the degree of lung function impairment. Patients reported reliance on CF physicians as a source of accurate information about transplant. Individuals with CF sometimes reported feeling too old or not worthy of transplant. Many had apprehensive or ambivalent feelings towards transplant. Patient-identified barriers and facilitators to lung transplant discussions can inform physicians as they discuss transplant in CF clinic.

Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs.

BACKGROUND: Persons with cystic fibrosis (CF) experience high morbidity and mortality, yet little is known about their palliative care needs and how clinicians may address these needs. OBJECTIVES: (1) To identify palliative care and advance care planning needs of patients with CF and their families; and (2) to identify clinicians' potential roles in meeting these needs. METHODS: A mixed-methods study of adult patients (age ≥18 years) with moderate-to-severe CF [forced expiratory volume in the first second (FEV1) <65% predicted] were recruited from a CF Center. Semi-structured interviews (30-60 minutes) and questionnaires were administered in person or by phone. Grounded theory was used to analyze the interviews. Questionnaires were analyzed descriptively. RESULTS: Forty-nine patients (FEV1 % range = 19%-63%) participated; the participation rate was 80% for eligible patients. Three main domains of palliative care needs were identified: (1) to be listened to, feel heard, and be "seen"; (2) understanding the context around CF and its trajectory, with the goal of preparing for the future; and (3) information about, and potential solutions to, practical and current circumstances that cause stress. In questionnaires, few patients (4.3%) reported talking with their clinician about their wishes for care if they were to become sicker, but mixed-methods data demonstrated that more than half of participants were willing to receive palliative care services provided those services were adapted to CF. CONCLUSION: Patients expressed a need for and openness to palliative care services, as well as some reluctance. They appreciated clinician communication that was open, forthcoming, and attuned to individualized concerns.