Received: 10 September 2022 | Revised: 30 December 2022 | Accepted: 19 January 2023 DOI: 10.1002/nop2.1634 E M P I R I C A L R E S E A R C H Q U A L I TAT I V E Expectations of patients awaiting lung transplantation: A qualitative study Olga Mestres-­Soler1,2 | Rebeca Gómez-­Ibáñez3,4 | Esperanza Zuriguel-­Pérez1,2 | 1 3,4 3,4 Roser Escobar-­Fornieles | Mariela Aguayo-­González | Juan Manuel Leyva-­Moral | 2,3,4 ​Carolina E. Watson 1 Vall d'Hebron University Hospital, Barcelona, Spain Abstract Aim: The main aim of the present study is to examine the expectations and feelings of 2 Nursing Research Group, VHIR Vall d'Hebron Institute of Research, Barcelona, Spain people awaiting lung transplantation. 3 Nursing Department, Universitat Background: The assessment of the benefits of lung transplant should consider, Autònoma de Barcelona, Barcelona, Spain among other things, the subjective perceptions of patients about the procedure, es- 4 Grupo de Investigación Enfermera sobre pecially in relation to the context and to their values, goals and expectations. This is Vulnerabilidad y Salud (GRIVIS), Nursing Department, Universitat Autònoma de an issue that has not been studied in depth, especially in Spain. Barcelona, Barcelona, Spain Design: Exploratory qualitative study. Correspondence Methods: Data were collected through semi-­structured interviews during the period Rebeca Gómez-­Ibáñez, Nursing of being on the waiting list for transplantation. Thematic analysis of the data was sup- Department, Bellaterra, Avinguda de Can Domènech, Barcelona 08193, Spain. ported by the Atlas.ti software. Email: rebeca.gomez@uab.cat Results: The study population comprised 16 patients awaiting lung transplant, a num- ber sufficient to reach data saturation. Four categories were identified to describe patients' feelings and expectations: (1) reasons for undergoing the transplant, (2) ex- pectations about life post-­transplant, (3) emotional state, and (4) relationship with the healthcare team. Conclusions: Patients have high expectations of lung transplantation. They see it as offering them a second chance at life, although the future creates uncertainty. The healthcare professionals are identified as key actors, providing essential support and information throughout the various stages of the process. Future research should ex- plore recipients' experiences of lung transplant at later stages. Relevance to clinical practice: It is important to adapt care through all the lung trans- plant process, which is accompanied by intense and complex emotions since the be- ginning. Thus, providing social and psychological support from the beginning may contribute to their health status, helping them deal with all the emotions and feelings experienced, and find balance between expectations and reality. Patient or public contribution: Sixteen patients awaiting lung transplant were inter- viewed. Interview transcripts were returned to participants to check for accuracy with their experiences. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes. © 2023 The Authors. Nursing Open published by John Wiley & Sons Ltd. 3766 |  wileyonlinelibrary.com/journal/nop2 Nursing Open. 2023;10:3766–3773. MESTRES-­SOLER et al. | 3767 KEYWORDS expectations, healthcare professionals, lung transplant, patient experience, qualitative research 1 | I NTRO D U C TI O N for lung transplantation, at a Hospital in Spain. Patients were re- cruited by purposive sampling technique in order to achieve sound Today, lung transplantation (LT) is a widely accepted therapeutic op- results. Inclusion criteria were age over 18 and no language difficul- tion in patients with advanced and progressive chronic respiratory ties, while patients with particularly severe conditions or pending re- disease once all other treatments have been exhausted. LT prolongs transplantation were excluded. Finally, a sample of 16 patients was survival and patients' quality of life (Román et al., 2011). According obtained, sufficient to reach data saturation. The expression of feel- to the Spanish National Transplant Organization, 362 lung trans- ings and thoughts by the participants was favoured. The sensitivity plants were performed in Spain in 2021 (Organización Nacional of the data being collected was taken into account. Therefore, one of Trasplantes, 2021), and the Hospital where the research was carried the main investigators, a psychologist, who was able to guide on how out was the centre with the highest transplant activity, having sur- to approach possible emotional situations arising from delving into passed the figure of 1000 LTs in adults since 1990. Despite this signif- the experience of the patients, and in selecting the questions. There icant growth, waiting lists for LT remain long; the mean waiting period were no other risks associated with conducting the study. Approval at our hospital is 56 days. It is a well-­established fact that there are a was obtained from our hospital's Research Ethics Committee (PR total of 260 centres worldwide that perform lung transplantation. As 490/2019). of June 2018, a total of 65,200 LTs have been carried out, with 81% The main researcher (OMS) works as a nurse in the hospital. She of them being bilateral. It is worth noting that the number of these contacted the participants on the day they agreed to join the waiting procedures has consistently increased over the years and is expected list. Patients received oral and written information about the study, to continue increasing in the future (Chambers et al., 2019). and they were able to ask any further questions. After confirming LT aims not just to increase survival, but also to improve health-­ their willingness to participate, they provided signed written con- related quality of life. In recent decades, health systems around sent and a date to conduct semi-­structured interviews was agreed the world have introduced person-­centred care models (Al-­Sahli and scheduled. The first author conducted all interviews following et al., 2021) in which the incorporation of the patient's perspective a semi-­structured interview guide based on four thematic areas is essential to guarantee that the outcomes measured are the ones (Table 1). Interviews were conducted at the outpatient consultation, that patients view as the most important, and thus encourage their lasted approximately 45 min and were recorded and transcribed ver- participation in decision-­making (Hsiao & Fraenkel, 2017). According batim by OMS. The first interview was used to validate the content to the World Health Organization (WHO Quality of Life Assessment of the questions. Interview transcripts were returned to participants Group, 1996) the assessment of the benefits of clinical interventions to check for accuracy with their experiences (Guba & Lincoln, 1994). should include the patient's subjective perception of life in the con- The analysis was carried out by RGI between January and March text of their value systems, goals, expectations, and standards. An 2021. Information was collected and analysed simultaneously awareness of the patients' expectations can increase their participa- tion in care, identify more realistic outcomes and influence the im- TA B L E 1 Script of the semi-­structured interview pact of an intervention on their quality of life, thus aiding the design 1. KNOWLEDGE of new strategies for improvement adapted to real needs. What meaning do you give to the transplant? There are numerous studies on quality of life before and after What do you know about the transplant? LT (Ochman et al., 2019; Seiler et al., 2016; Singer et al., 2013; Stącel Who has informed you? With the knowledge you have of the lung et al., 2020; Thabut & Mal, 2017). Few of them, however, have explored transplant process, how do you feel about it? What do you need to know? patients' expectations. Studies using qualitative methodologies remain 2. FEARS relatively rare in the transplant literature, but this approach brings How do you feel about the transplant? What are the emotions unique strengths to many research areas by providing insights into peo- associated with the transplant? ple's behaviours, attitudes, beliefs, and values (Bogue Kerr et al., 2018; Are you afraid of the transplant? Why? What worries you most about the transplant? Why? Tong et al., 2013), managing to personalize the attention and improve What motivations do you feel before the transplant? the quality of the care offered. The main aim of the present study is to 3. QUALITY OF LIFE examine the expectations and feelings of people awaiting LT. How would you describe your quality of life right now? How did you feel when you decided to go on the LT list? How did you make that decision? How do you imagine the transplant process? 2 | M E TH O D O LO G Y 4. EXPECTATIONS What do you expect from life after the transplant? Exploratory descriptive qualitative study of people with advanced And your expectations? How would you like the whole process to evolve? How do you see your life in the future? lung disease, refractory to medical treatment, who are candidates 3768 | MESTRES-­SOLER et al. (Sandelowski, 2008) using the thematic content analysis proposed 3.1 | Reasons for undergoing transplant by Braun & Clarke (2006), with the support of the software Atlas. ti® version 8. Data were collected until information saturation was The main reason for patients to request lung transplant is the im- reached, that is, when the data collected were repetitive and did not pact of their pulmonary pathology on their daily lives. Among the add anything new to the results (Taylor & Bogdan, 1984). The inter- severe disabling symptoms they mention, cough, sensation of per- views were read once in order to identify the main meaning, and after manent suffocation, extreme mucus, pain, tiredness and fatigue that coded according to the content found, and later grouped into stand out. categories. Verbatim extracts from the interviews were used to illus- “The feeling is that I am always exhausted and out of breath. I don't trate the results. The reporting guideline COREQ was used (Booth want this; I've always been very active and now I can't do anything. If I et al., 2014). In order to ensure the trustworthiness of the qualitative think what I used to be able to do… now I can't walk 100 meters without methodology, an exhaustive analysis of data collection and process- getting tired” (P 013). ing was carried out (Guba & Lincoln, 1994; Shenton, 2004). In this “I'm exhausted, I can't walk, I get tired, I'm short of breath, I have a line, to guarantee the rigour of the study, we followed the methods lot of pain when I cough. I am 65 years old, and I feel as if I were 80” (P outlined by Guba and Lincoln (1994). These included: (1) Ensuring 016). credibility by having two participants review the data and confirm The treatments prescribed to deal with the symptoms have en- the accuracy of the themes and sub-­themes in relation to their per- tailed a great physical and emotional burden for patients for many sonal experiences; (2) Ensuring dependability by consulting with years. They find the situation overwhelming. The treatment they two experts with a background in qualitative research to verify the find most tiresome is the need to inhale oxygen and to carry the meanings we had formulated; (3) Ensuring transferability by accu- cylinder around them. rately transcribing the verbatim text of each interview for presenta- “I've been in hospital so often, I've had some terrible years, always tion in the study; and (4) Ensuring confirmability by carefully storing under medication, always catching infections” (P 016). the original materials for future reference and verification. Their pathology makes them feel dependent on other people and on their medication. They want the transplant in order to feel free and to fend for themselves. Some describe themselves as prisoners, 3 | R E S U LT S and report feelings of uselessness. The limitations are so extreme that they do not recognize themselves and say that they have lost Interviews were conducted with 16 participants, eight women and their identity. eight men, with a mean age of 56.7 years. Their expectations about “Now I need a machine to go out and another to be at home. And the transplant are summarized under the four categories and ten that's right, you can't do anything by yourself. Without the machine I subcategories displayed in Table 2. would die” (P 006). TA B L E 2 Categories of qualitative CATEGORIES SUBCATEGORIES CODES analysis Reasons for Severe symptoms Cough, choking, mucosity, pain, undergoing tiredness, fatigue transplant Treatment overload Feeling overwhelmed, oxygen, medication, wearout Loss of freedom and identity Dependence on people and objects, prisoners of the disease, feeling of uselessness, do not recognize themselves Expectations of life Live better Happiness, second chance post-­transplant Live longer Only option, family Emotional state Fear Intervention, complications, waiting times, organ rejection, death Feelings towards the new Uncertainty, new organ, different organ sensations Motivation Strength, fight Relationship with The importance of Resolve doubts, individualized care healthcare team information Gratitude Proximity, excellent treatment, resolution MESTRES-­SOLER et al. | 3769 3.2 | Expectations of life post-­transplant go forward. I have to be positive and think that everything will be fine” (P 004). Most participants hope that the transplant will improve their quality “I'm so excited about being able to resume my normal life, thinking of life and allow them to live longer. They are not happy as they are, about this motivates me and gives me strength. For me it's everything, to and the transplant is their only hope for a better life. They see it as a live again, this is what the transplant can give me” (P 007). second chance, an opportunity to do everything they want, without “I feel motivated to enjoy life, after all I've been through, and take ad- feeling sick and limited. vantage of what life gives me. I am 100% sure that my life will change—­ “I want to be born again, a new beginning, I am getting worse and well, if not 100%, 99%” (P 009). worse and I see it day by day. Born again. The other day I had an ap- pointment and I wondered whether they'd tell me I was going to have the transplant” (P 015). 3.4 | The relationship with the healthcare team “To improve my quality of life and get back to normal, after what I've been through. It's like being born again” (P 007). The participants stress the importance of feeling informed through- The testimonies show that participants regard the transplant as out the process. They report that the health care team has always the only way to continue sharing their lives with their families. been very willing to answer questions and offer all the necessary “In the end, I'd prefer to die on the operating table than to live like information. The ability to share those moments with the health care this, every little extra bit of life is important. And I hope it will last a few team makes them feel that they are being treated as people, not just more years” (P 007). as patients. “Yes, faced with an unknown situation, obviously I have my doubts, but the health care team always explained everything to me. Information 3.3 | Emotional state is power, and in my case it has been peace of mind” (P 008). All the participants report having received excellent, hands-­on Fear is the emotion most frequently mentioned by the interview- treatment; they continually thank health professionals for their ees: fear of the surgery itself, fear of complications, concern about commitment. being able to resolve family and work issues before the intervention, “I've felt very supported as if they were my family, if I have a problem concern that the call confirming that there is an available organ will I call them. I only have words of gratitude” (P 001). not arrive, but above all, the fear that the transplanted organ will be rejected and that they will die. “I am afraid for my family, I have three small daughters and my hus- 4 | DISCUSSION band died a year and a half ago. They only have me and if something happens to me… It is a major operation […] I am afraid that after a while The results of this study identify the reasons why patients on the something will happen to my immune system and that it will reject the lung transplant waiting list want surgery: namely, the severity of lung. I am afraid of dying” (P004). their symptoms and the progressive decline in their quality of life “Well, I'm worried they won't call me, or that it'll be too late when due to the burdensome treatment that they endure. they do. I am 40 years old and I think about my children and about It is well known that an illness forces people to adapt to a new whether my wife will be able to handle everything alone… That scares reality (Sacks, 2009). Starting from self-­determination theory (SDT) me a lot. I don't sleep well thinking that it will take a long time to find a (Ryan & Deci, 2017), a recent systematic review exploring the expe- lung for me, or that in the end they won't be able to” (P 011). riences of people living with a chronic disease (Eassey et al., 2020) The fact that they will be carrying an organ that is not the one emphasizes as a key emerging theme the fact that people with a they were born with, or that it comes from a deceased person, can chronic disease basically yearn to “live a disease-­free life”, and sug- also generate discomfort and uncertainty; they do not know what gests that living with disease puts to the test the three basic psycho- they will feel, or how they will react in this new situation. They feel logical needs posited by the theory of self-­determination: the senses they may need psychological support to deal with this emotional of autonomy, competence, and relatedness. maelstrom. People on the lung transplant waiting list face specific prob- “It makes you feel uneasy to think that someone has to die so that I lems because their physical condition and autonomy are compro- can go on living and that they've put a piece of that person in me. I don't mised (Rosenberger et al., 2012). For example, having to depend know how I'll react afterwards, if I'll accept it, I mean psychologically” on artificial oxygen for a large part of their daily activities (Ivarsson (P 012). et al., 2011; Rosenberger et al., 2012), the frequent medical compli- Despite the emotional toll of the situation, most of the partici- cations and recurrent hospital admissions, the demanding treatment pants state that they have the strength to continue; they have the they must undergo while on the waiting list and the need for social motivation to go on fighting. isolation to avoid infection place major limitations on their daily life “I've already cried enough, I cry inside, I allow myself the luxury of (Skogeland et al., 2018). All these problems undermine their sense of crying one day because I feel bad, but the next day I dust myself off and autonomy, competence, and relatedness. 3770 | MESTRES-­SOLER et al. As outlined above, the participants in our study highlight the transplant, as are doubts about how the process will unfold and what loss of freedom and identity as one of the reasons why they want a the results will be, including the fear of dying (Burns et al., 2017). The transplant. These results corroborate those of the narrative review risk of organ rejection is another concern (Evangelista et al., 2003), of qualitative studies conducted by Skogeland et al. (2018), who sug- and being on the waiting list causes unease (Koons & Smeltzer, 2018; gested that precisely being on the waiting list offers the hope of a Rosenberger et al., 2012), as patients worry about whether the life without the limitations imposed by the disease, especially social organ will arrive and how long they will have to wait (Burns withdrawal (Skogeland et al., 2018). Similarly, other studies use the et al., 2017)—­and also about the potential complications (Evangelista term “life in limbo” to refer to the experience of the period on the et al., 2003), the threat to survival posed by the disease (Magán-­ waiting list (Macdonald, 2006), and suggest that during this time Uceda et al., 2015), fear and concern for their families (Evangelista of waiting for a new organ, life is, in some way, on hold (Ivarsson et al., 2003) and, finally, apprehension about the surgery itself. et al., 2011). Indeed, a review of qualitative studies of patients on Among the other main categories or subthemes that emerged the waiting list for a kidney transplant identifies the restriction of from the data analysis were the patients' feelings towards the organ freedom during this waiting phase as one of the key themes (Koons and the donor. One of the common concerns reported by patients & Smeltzer, 2018). before transplantation is not knowing how they will feel about the For all these reasons, the present study suggests that for pa- new organ. These results are consistent with the issues reported by tients with severe pathology, the option of undergoing a transplant kidney transplant recipients, both before and after surgery (Amerena and the power to decide whether or not to proceed with it may fa- & Wallace, 2009); those authors noted that patients need to adapt to vour their sense of autonomy, as it offers them a certain sense of a changing sense of themselves and also to the “alien organ” in order personal control over their condition. In addition, it seems to offer to establish a positive relationship with it. Also coinciding with our them the opportunity to regain a sense of connection or relatedness findings, a study of heart transplant recipients stressed that partic- with others because it mitigates their sensation of being isolated. ipants needed to accept and adapt to the change of organ and bear Finally, it may improve their sense of competence, in terms of their in mind the possible complications deriving from its rejection and perceptions of their capacity for self-­care (Eassey et al., 2020; Ryan subsequent treatment (Sadala & Stolf, 2008). & Deci, 2017). About feelings towards the donor, the participants in this study The opportunity of a lung transplant allows prospective patients are well aware that in order for the transplant to be carried out, it is to imagine a future with fewer limitations. The participants clearly necessary for someone to lose their life. In other studies, this finding stated that they hope to live longer and enjoy a higher quality of has been associated with a feeling of “existential” guilt (Skogeland life. These findings are consistent with the results of a qualitative et al., 2018) arising from the ethical issues inherent to organ dona- systematic review of the experiences of heart, lung, and heart-­lung tion (Fedson & Siegler, 2010). Transplant recipients may experience transplant recipients, which found that patients regard transplanta- a sensation of inadequacy, feeling responsible for the disease that tion as a chance to lead a life with a much better state of health requires the transplant or for awaiting the death of a suitable organ (Stubber & Kirkman, 2020). The testimonies recorded in that study donor (Stubber & Kirkman, 2020). recall those indicated by our patients, with expressions such as “sec- In contrast, the participants in this study also expressed feel- ond chance”, “back to normality” and “resumption of life”. ing motivated and strong enough to continue moving forward. This Indeed, one of the emotions most frequently mentioned by pa- motivation is essential and it is important that candidates for trans- tients scheduled for a lung transplant is hope (Brügger et al., 2014), plant should have the resources needed to avoid maladaptive coping and the prospect of a better future. In that study, patients on the strategies that indicate emotional distress and depression (Yorke & waiting list imagined what it would be like to breathe with healthy Cameron-­Traub, 2008). lungs and, like our participants, what everyday life would be like with- As this and other studies have shown, from the very beginning out the limitations imposed by their disease (Skogeland et al., 2018). the lung transplant process is accompanied by intense and complex Patients on the waiting list also experience fear, as reported by emotional experiences (Brügger et al., 2014). The results suggest the a recent qualitative systematic review (Stubber & Kirkman, 2020) of coexistence of feelings of fear and unease alongside hope and mo- the experiences of recipients of heart, lung, and heart-­lung trans- tivation, describing the emotional situation typical of a liminal state plants. Those authors noted that their patients frequently reported (in this case, being on the waiting list) understood as an intermediate feeling afraid both of the transplant and its implications and also of phase in their health-­disease process. A previous study focusing on the disease itself. kidney transplant also highlights this paradox and internal conflict The process of getting on the waiting list and staying there is by juxtaposing the feelings of discouragement and anxiety associ- recognized as a long, stressful experience (Macdonald, 2006) and ated with the disease process with the hope provided by the trans- a time associated with great psychological vulnerability (Magán-­ plant and the opportunity of a new life (Amerena & Wallace, 2009). Uceda et al., 2015). The literature suggests that levels of anxiety Another phenomenological study that focused on the experiences prior to transplantation are higher than after it (Ågren et al., 2017). of kidney transplant recipients also bears out the paradoxical nature Coinciding with our findings, previous work has found that anxiety, of these experiences, between health and illness, between self and fear and uncertainty are common emotions while waiting for the other, and between life and death (Bogue Kerr et al., 2018). For this MESTRES-­SOLER et al. | 3771 reason, those authors propose using the concept of “transliminal self” significant physical and social limitations; they regard transplanta- to refer to the complexity of the experience of a transplant process. tion as the only possible option and accept the risks involved. The In relation to the experience of the care received, this study un- expectations placed in the transplant are high and it is conceived as derlines the importance of receiving comprehensible information, a second chance. However, the post-­transplant future is uncertain. the rapid resolution of problems and doubts, and individualized and Finally, the health team is identified as a key part of the entire pro- personalized attention. All participants felt that the information cess, an element of support and a vital source of information. they received was appropriate for them. In contrast, a recent study These results suggest that the lung transplant process is a com- of patients with cystic fibrosis undergoing transplantation identified plex emotional experience, thus highlighting the importance of so- the need to offer more detailed information to broaden their under- cial and psychological support. standing of the situation, and also the need for greater coordination Future research should explore recipients' experiences of lung in treatment transition issues, earlier introduction of the transplant transplant at later stages, in an attempt to determine whether their option, and broader social support (Smith et al., 2020). These dif- pre-­surgical expectations of quality of life are met after they have ferences are likely to be related to the point in the care process at received the new organ. which the study is carried out, since the perception of our partici- pants may differ pre-­ and post-­transplant. In parallel, in a study ex- ploring patients' perceptions of care and their nursing care needs 7 | R E LE VA N C E TO C LI N I C A L PR AC TI C E while waiting for a lung and/or heart transplant (Yorke & Cameron-­ Traub, 2008), information was identified as one of the key topics, Our findings highlight the importance of adapting care through all alongside regular contact and familiarity. The clinical staff are an the lung transplant process, which is accompanied by intense and invaluable external source of both psychological and practical sup- complex emotions since the beginning. Being on the waiting list port, highlighting the value of appropriate information at all times implies the coexistence of feelings of fear and hope, expectations (Stubber & Kirkman, 2020). Previous studies suggest that in patients about the transplant are high and the opportunity of a lung trans- awaiting transplant it is essential to pay attention to psychosocial plant allows patients to imagine a future with fewer limitations; thus, factors throughout the care process, highlighting the key role of providing social and psychological support from the beginning may support, information, help and comforting (Ågren et al., 2017). contribute to their health status, helping them deal with all the emo- Similarly, Macdonald (2006) described emotional support from tions and feelings experienced, and find balance between expecta- the healthcare team, and practical support as the disease pro- tions and reality. gressed, as being essential. Those authors stressed the importance of the information provided by the medical and nursing team. The psychological support offered by nursing throughout the process, 8 | I M PAC T S TATE M E NT especially during the waiting phase, may help to alleviate some of the anxieties or fears experienced by patients, and it has been shown What does this paper contribute to the wider global clinical that the nurse–­patient interaction can influence health outcomes community? and the general well-­being of patients with severe chronic condi- • Patients on the lung transplant list place high expectations in the tions (Yorke & Cameron-­Traub, 2008). Finally, the participants in this transplant, as the opportunity of a lung transplant allows them to study, in common with those in other reports (Ivarsson et al., 2011; imagine a future with fewer limitations and the transplant itself is Yorke & Cameron-­Traub, 2008), felt close to their careers, were conceived a second change. grateful for the attention received, and felt accompanied at all times. • Being on the waiting list implies the coexistence of feelings of fear and hope and the lung transplant process is accompanied by in- tense and complex emotional experiences. Providing social and 5 | LI M ITATI O N S psychological support to potential recipients of a lung transplant from moment they are included in the waiting list may contribute Despite the small sample size, reaching data saturation ensured the to their health status, helping them deal with all the emotions and rigour and transferability of the results in territories with similar feelings experienced, and helping them to find balance between health policies contexts. Therefore, the results cannot be general- expectations and reality. ized, which is a characteristic of the methodology used. While this • Nurses and health team need to be aware that they are a key part is a single-­centre study, it is a reference hospital as patients from of the entire lung transplant process, and are seen as an element various communities come to be attended. of support and a key source of information. AU T H O R C O N T R I B U T I O N S 6 | CO N C LU S I O N S Study conception and design: (OMS, RGI, JLM, MAG, REF). Data col- lection: (OMS). Data analysis and interpretation: (RGI, CW). Drafting People on waiting lists for surgery have a very low perception of of the article: (OMS, RGI, CW, EZP,JLM,MAG). Critical revision of the quality of life. They are obliged to live with their pain and endure article: (OMS, RGI, CW). 3772 | MESTRES-­SOLER et al. F U N D I N G I N FO R M AT I O N Burns, T., Fernandez, R., & Stephens, M. (2017). The experience of wait- ing for a kidney transplant: A qualitative study. Journal of Renal Care, This research did not receive any specific grant from funding agen- 43(4), 247–­255. https://doi.org/10.1111/jorc.12209 cies in public, commercial or not-­for-­profit sectors. Chambers, D. C., Cherikh, W. S., Harhay, M. O., Hayes, D., Hsich, E., Khush, K. K., Meiser, B., Potena, L., Rossano, J. W., Toll, A. E., Singh, C O N FL I C T O F I N T E R E S T T. 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How to cite this article: Mestres-­Soler, O., Gómez-­Ibáñez, R., Smith, P. J., Dunitz, J. M., Lucy, A., Hempstead, S. E., Tallarico, E., Faro, A., Pilewski, J. M., & Ramos, K. J. (2020). Incorporating patient and Zuriguel-­Pérez, E., Escobar-­Fornieles, R., Aguayo-­González, caregiver feedback into lung transplant referral guidelines for in- M., Leyva-­Moral, J. M., & Watson, C. E. (2023). Expectations dividuals with cystic fibrosis—­Preliminary findings from a novel of patients awaiting lung transplantation: A qualitative study. paradigm. Clinical Transplantation, 34(10), e14038. https://doi. Nursing Open, 10, 3766–3773. https://doi.org/10.1002/ org/10.1111/ctr.14038 Stącel, T., Jaworska, I., Zawadzki, F., Wajda-­Pokrontka, M., Tatoj, Z., Urlik, nop2.1634 M., Nęcki, M., Latos, M., Szywacz, W., Szczerba, A., Antończyk, R.,