Lung transplantation (LuT) is an established treatment to improve the survival of patients with end-stage lung diseases and has been performed in over 40,000 patients worldwide.1,2 Lung transplantation is performed in patients suffering from a variety of lung diseases such as chronic obstructive pulmonary disease, bronchiectasis, cancer, connective tissue disease, idiopathic interstitial pneumonia, interstitial lung disease, pulmonary arterial hypertension, lymphangioleiomyomatosis, obliterative bronchiolitis, sarcoidosis, other lung diseases or retransplant.3 Patients who are considered eligible for transplant suffer from one of the above end-stage lung diseases and meet all of the following criteria: i) high (>50%) risk of death from lung disease within two years if LuT is not performed, ii) high (>80%) likelihood of surviving at least 90 days after LuT and iii) high (>80%) likelihood of five-year post-transplant survival from a general medical perspective provided that there is adequate graft function.4 There are various absolute and relative contraindications including, but not limited to, untreatable dysfunction of another major organ system or non-adherence to medical therapy. A recent review indicates that LuT substantially improves quality of life, especially in the domains of physical health and functioning.5 Over recent years, survival time after receiving a lung transplant has improved significantly, with 79% of all lung transplant recipients surviving the first year after transplantation. The median survival of patients is now about eight years following LuT.3
Despite the undoubted benefits of LuT, it is not a “cure” for end-stage lung diseases.6 Similar to other solid organ transplant recipients, the focus of care for lung transplant recipients has shifted from the direct post operative phase to one of long-term follow-up.7 Lung transplant recipients are increasingly regarded as chronically ill patients6 who need to adapt to and follow complex self-management tasks8 to prevent complications, such as graft rejection or infections, and to enable the patient to keep the transplanted graft as long as possible.9
This paradigmatic shift from short- to long-term care of lung transplant recipients has resulted in the application of chronic illness management strategies that aim to foster lung transplant recipients’ self-management.10 Self-management, in this regard, can be defined as an:
“individual's ability to manage the symptoms, treatment, physical and psychological consequences and lifestyle changes inherent in living with a chronic condition”.11(p178)
To understand self-management after LuT, a conceptual model, originally developed in the context of renal transplantation, may be useful.12 This model reports that self-management after transplantation comprises of adherence to a life-long medical regimen including medication-taking,8,10 self-monitoring of lung function and signs and symptoms of complications,10,13 and maintaining a healthy lifestyle.10 The latter requires lung transplant recipients to adapt various behaviors, which may include fundamental lifestyle changes for individual patients, such as abstaining from harmful substances, keeping medical appointments, refraining from smoking, eating healthily, exercising, and protecting from the sun.10,12,14 In order to follow these behaviors, lung transplant recipients need to possess and execute a set of skills including action taking, decision making, problem solving, resource finding and utilization, as well as the establishment of partnerships with healthcare providers.15
Research has indicated that lung transplant recipients realize the importance of following multi-dimensional self-management behaviors.16,17 However, research has also shown that self-management is insufficient in many aspects.9,10,18-21 Of these self-management aspects, medication adherence has been studied most extensively, with up to 72% of lung transplant recipients displaying some extent of medication non-adherence at some time.10,22 Suboptimal implementation of transplant-related self-management is also reported in other self-management tasks including infrequent use of self-monitoring of lung function.16,19,20,23 Likewise, smoking cessation proves difficult in some lung transplant recipients.24,25 Consequently, there is a gap between patients’ awareness of the need and importance of self-management and individual health-related behavior.
Research in solid organ transplant recipients has shown that adherence to self-management tasks depends on patients’ personal experiences and attitudes rather than on non-modifiable factors such as gender, age or ethnicity.26-28 Qualitative research in renal transplant recipients, for example, has demonstrated that a major driver for medication adherence is experience of dialysis treatment.29-31 Likewise, lung transplant recipients with cystic fibrosis and prior experience of home spirometry displayed better adherence to home spirometry than other lung transplant patients.16 Attitudes also play an important role in the self-management of many conditions. In 2003, the World Health Organization32 identified patients’ attitudes as one of several patient-related factors which affected adherence to self-management in patients with HIV,33 epilepsy,34 and diabetes.35 In renal transplant recipients, skepticism or medication-related concerns were shown to be associated with inadequate medication adherence.36,37 A positive, optimistic attitude to life and illness in general was also shown to be an important part of managing ones’ everyday life after lung and heart transplantation.38,39
Experiences and attitudes, defined as a “tendency that is expressed by evaluating a particular entity with some degree of favor or disfavor”13(p666), as well as values, beliefs or knowledge can best be explored using qualitative research methods.40-42 In the case of solid organ transplant recipients, this has been performed to some extent; however, research has primarily focused on isolated self-management tasks such as medication-taking,28 social adaptation,17 alcohol abstinence,43 smoking cessation44 or physical activity,45 neglecting the multidimensionality of self-management after solid organ transplantation.46 Synthesizing qualitative evidence by conducting systematic reviews may deepen our comprehension of how patients perceive and execute self-management. A systematic review on renal transplant recipients’ motivations, challenges and attitudes to self-management has been performed recently.27 However, no qualitative systematic review on any aspect of LuT or on lung transplant recipients’ experiences of and attitudes towards self-management could be found in the JBI Database of Systematic Reviews and Implementation Reports, the Cochrane Database of Systematic Reviews or the PROSPERO International Prospective Register of Systematic Reviews.
The reasons for the gap between lung transplant recipients’ awareness of the need for self-management and their self-management behavior remain unclear. This review aims to identify lung transplant recipients’ experiences of and attitudes towards self-management. The findings of this review will help healthcare practitioners to better understand the challenges their patients face, potentially resulting in more patient-centered education and an increase in lung transplant recipients’ self-management abilities.
This review will consider studies that include persons over 18 years who have received a lung transplant. No restrictions on underlying diseases, gender, ethnicity or length of time since transplant will be imposed. Studies including participants with mixed types of solid organ transplantations will be included where it is possible to accurately identify data on aspects of lung transplant-related self-management separately. Data on self-management related to other conditions will be excluded. Only studies on participants who are able to perform their self-management tasks independently will be included.
This review will consider studies on the experiences and attitudes of lung transplant recipients towards self-management.
This review will consider all available international evidence on lung transplant recipients. If this review reveals regional and/or cultural differences in lung transplant recipients’ experiences and attitudes towards self-management, these will be explicated in the review.
Types of studies
This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, and feminist research. Mixed-methods studies will be included only when qualitative data can be extracted separately.
Studies published in English or German will be considered for inclusion in this review; however, studies found in any other languages will be mentioned in the review. No date restrictions will be imposed for inclusion in this review.
The search strategy will aim to find both published and unpublished studies. An initial limited search of MEDLINE and CINAHL has been undertaken using the terms “lung transplantation”, AND “self-management”, AND (“attitude” OR “experience”). This was followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. This informed the development of a search strategy which will be tailored for each information source. A full search strategy for MEDLINE is detailed in Appendix I. The reference list of all studies selected for critical appraisal will be screened for additional studies.
The databases to be searched from their inception will include: MEDLINE, CINAHL, PsycINFO, Embase, Web of Science, British Nursing Index. The search for unpublished studies will include: ProQuest Dissertations and Theses, EThOS, Open Grey (Sigle).
Following the search, all identified citations will be collated and uploaded into Endnote and duplicates removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review. Studies that may meet the inclusion criteria will be retrieved in full and their details imported into Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI). The full text of selected studies will be retrieved and assessed in detail against the inclusion criteria. Full text studies that do not meet the inclusion criteria will be excluded and reasons for exclusion will be provided in an appendix in the final systematic review report. Included studies will undergo a process of critical appraisal. The results of the search will be reported in full in the final report and presented in a PRISMA flow diagram.47 Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
Assessment of methodological quality
Selected studies will be critically appraised by two independent reviewers for methodological quality in the review using the JBI Critical Appraisal Checklist for Qualitative Research.48 Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. The results of critical appraisal will be reported in narrative form and in a table.
All studies, regardless of the results of their methodological quality, will undergo data extraction and synthesis. Studies rated as “unclear” or “no” in seven or more appraisal items will be specified.
Qualitative data will be extracted from papers included in the review using the standardized data extraction tool49 from JBI SUMARI by two reviewers. The data extracted will include specific details about the populations, context, culture, geographical location, study methods and the phenomena of interest relevant to the review question and specific objectives. Findings, and their illustrations, will be extracted and assigned a level of credibility. Authors of primary studies will be contacted for clarification or missing information when necessary.
Qualitative research findings will, where possible, be pooled using JBI SUMARI with the meta-aggregation approach.48 This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form.
Assessing certainty in the findings
The final synthesized findings will be graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings.50 The Summary of Findings includes the major elements of the review and details how the ConQual score is developed. Included in the Summary of Findings are the title, population, phenomena of interest and context for the specific review. Each synthesized finding from the review is then presented along with the type of research informing it, a score for dependability, credibility, and the overall ConQual score.
Appendix I: Initial search strategy (MEDLINE via Ovid)
1. DeVito Dabbs A, Terhorst L, Song MK, Shellmer DA, Aubrecht J, Connolly M, et al. Quality of recipient-caregiver relationship and psychological distress are correlates of self-care agency after lung transplantation. Clin Transplant
2013; 27 1:113–120.
2. Yusen RD, Christie JD, Edwards LB, Kucheryavaya AY, Benden C, Dipchand AI, et al. The Registry of the International Society for Heart and Lung Transplantation: Thirtieth Adult Lung and Heart-Lung Transplant Report—2013; Focus Theme: Age. J Heart Lung Transplant
2013; 32 10:965–978.
3. Yusen RD, Edwards LB, Dipchand AI, Goldfarb SB, Kucheryavaya AY, Levvey BJ, et al. The Registry of the International Society for Heart and Lung Transplantation: Thirty-third Adult Lung and Heart–Lung Transplant Report—2016; Focus Theme: Primary Diagnostic Indications for Transplant. J Heart Lung Transplant
2016; 35 10:1170–1184.
4. Weill D, Benden C, Corris PA, Dark JH, Davis RD, Keshavjee S, et al. A consensus document for the selection of lung transplant candidates: 2014—An update from the Pulmonary Transplantation Council of the International Society for Heart and Lung Transplantation. J Heart Lung Transplant
2015; 34 1:1–15.
5. Singer J, Chen J, Blanc PD, Leard LE, Kukreja J, Chen H. A thematic analysis of quality of life in lung transplant: the existing evidence and implications for future directions. Am J Transplant
2013; 13 4:839–850.
6. Schaevers V, Schoonis A, Frickx G, Verleden G, Jans C, Rosseel C, et al. Implementing a standardized, evidence-based education program using the patient's electronic file for lung transplant recipients. Prog Transplant
2012; 22 3:264–270.
7. Dobbels F, Vanhaecke J, Dupont L, Nevens F, Verleden G, Pirenne J, et al. Pretransplant predictors of posttransplant adherence and clinical outcome: an evidence base for pretransplant psychosocial screening. Transplantation
2009; 87 10:1497–1504.
8. Rosenberger EM, DeVito Dabbs AJ, DiMartini AF, Landsittel DP, Pilewski JM, Dew MA. Long-Term Follow-up of a Randomized Controlled Trial Evaluating a Mobile Health Intervention for Self-Management
in Lung Transplant Recipients. Am J Transplant
2017; 17 5:1286–1293.
9. Zaldonis J, Alrawashdeh M, Atman KS, Fatigati A, Dabbs AD, Bermudez CA. Predictors and influence of goal orientation on self-management
and health-related quality of life after lung transplant. Prog Transplant
2015; 25 3:230–242.
10. Hu L, Lingler JH, Sereika SM, Burke LE, Malchano DK, Dabbs AD, et al. Nonadherence to the medical regimen after lung transplantation: A systematic review. Heart Lung
2017; 46 3:178–186.
11. Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management
approaches for people with chronic conditions: a review. Patient Educ Couns
2002; 48 2:177–187.
12. Schäfer-Keller P, Dickenmann M, Berry DL, Steiger J, Bock A, De Geest S. Computerized patient education in kidney transplantation: Testing the content validity and usability of the Organ Transplant Information System (OTISTM). Patient Educ Couns
2009; 74 1:110–117.
13. Kilpatrick K, Kaasalainen S, Donald F, Reid K, Carter N, Bryant-Lukosius D, et al. The effectiveness and cost-effectiveness of clinical nurse specialists in outpatient roles: a systematic review. J Eval Clin Pract
2014; 20 6:1106–1123.
14. Kowalski C, Diener S, Steffen P, Wuerstlein R, Harbeck N, Pfaff H. Associations between hospital and patient characteristics and breast cancer patients’ satisfaction with nursing staff. Cancer Nurs
2012; 35 2:221–228.
15. Lorig KR, Holman H. Self-management
education: history, definition, outcomes, and mechanisms. Ann Behav Med
2003; 26 1:1–7.
16. Teichman BJ, Burker EJ, Weiner M, Egan TM. Factors associated with adherence to treatment regimens after lung transplantation. Prog Transplant
2000; 10 2:113–121.
17. Forsberg A, Karlsson V, Cavallini J, Lennerling A. The meaning of social adaptation after solid organ transplantation. Nordic J Nurs
2015; 36 2:62–67.
18. DeVito Dabbs A, Song MK, Myers BA, Li R, Hawkins RP, Pilewski JM, et al. A Randomized Controlled Trial of a Mobile Health Intervention to Promote Self-Management
After Lung Transplantation. Am J Transplant
2016; 16 7:2172–2180.
19. Dew MA, DiMartini AF, Dabbs ADV, Zomak R, De Geest S, Dobbels F, et al. Adherence to the medical regimen during the first two years after lung transplantation. Transplantation
2008; 85 2:193.
20. Kugler C, Gottlieb J, Dierich M, Haverich A, Strueber M, Welte T, et al. Significance of patient self-monitoring for long-term outcomes after lung transplantation. Clin Transplant
2010; 24 5:709–716.
21. Bosma OH, Vermeulen KM, Verschuuren EA, Erasmus ME, van der Bij W. Adherence to immunosuppression in adult lung transplant recipients: Prevalence and risk factors. J Heart Lung Transplant
2011; 30 11:1275–1280.
22. Kugler C, Fischer S, Gottlieb J, Tegtbur U, Welte T, Goerler H, et al. Symptom experience after lung transplantation: impact on quality of life and adherence. Clin Transplant
2007; 21 5:590–596.
23. Lindgren BR, Snyder M, Sabati N, Adam T, Pieczkiewicz D, Finkelstein SM. Health Locus of Control and Adherence with Home Spirometry Use in Lung Transplant Recipients. Prog Transplant
2002; 12 1:24–29.
24. DeVito Dabbs A, Hoffman LA, Iacono AT, Wells CL, Grgurich W, Zullo TG, et al. Pattern and predictors of early rejection after lung transplantation. Am J Crit Care
2003; 12 6:497–507.
25. Ruttens D, Verleden SE, Goeminne PC, Poels K, Vandermeulen E, Godderis L, et al. Smoking resumption after lung transplantation: standardised screening and importance for long-term outcome. Eur Respir J
2013; 43 1:300.
26. Rebafka A. Medication adherence after renal transplantation - a review of the literature. J Ren Care
2016; 42 4:239–256.
27. Jamieson NJ, Hanson CS, Josephson MA, Gordon EJ, Craig JC, Halleck F, et al. Motivations, Challenges, and Attitudes to Self-management
in Kidney Transplant Recipients: A Systematic Review of Qualitative Studies. Am J Kidney Dis
2015; 67 3:461–478.
28. Tong A, Howell M, Wong G, Webster AC, Howard K, Craig JC. The perspectives of kidney transplant recipients on medicine taking: a systematic review of qualitative studies. Nephrol Dial Transplant
2011; 26 1:344–354.
29. Russell CL, Kilburn E, Conn VS, Libbus MK, Ashbaugh C. Medication-taking beliefs of adult renal transplant recipients. Clin Nurse Spec
2003; 17 4:200–210.
30. Orr A, Orr D, Willis S, Holmes M, Britton P. Patient perceptions of factors influencing adherence to medication following kidney transplant. Psychol Health Med
2007; 12 4:509–517.
31. Tong A, Sainsbury P, Chadban S, Walker RG, Harris DC, Carter SM, et al. Patients’ experiences and perspectives of living with CKD. Am J Kidney Dis
2009; 53 4:689–700.
32. Sabaté E (ed). Adherence to Long-Term Therapies. Evidence for Action. Geneva: WHO; 2003.
33. Siegel K, Karus D, Schrimshaw EW. Racial differences in attitudes toward protease inhibitors among older HIV-infected men. AIDS Care
2000; 12 4:423–434.
34. Desai P, Padma MV, Jain S, Maheshwari MC. Knowledge, attitudes and practice of epilepsy: experience at a comprehensive rural health services project. Seizure
1998; 7 2:133–138.
35. Johnson SB. Knowledge, attitudes, and behavior: Correlates of health in childhood diabetes. Clin Psychol Rev
1984; 4 5:503–524.
36. Griva K, Davenport A, Harrison M, Newman SP. Non-adherence to immunosuppressive medications in kidney transplantation: intent vs. forgetfulness and clinical markers of medication intake. Ann Behav Med
2012; 44 1:85–93.
37. Goetzmann L, Klaghofer R, Spindler A, Wagner-Huber R, Scheuer E, Buddeberg C. Die ”Medikamenten–Erfahrungs–Skala für Immunsuppressiva“ (MESI): erste Ergebnisse zu einem neuen Screeninginstrument in der Transplantationsmedizin. [Medication Experience Scale for Immunosuppressants’ (MESI): first results on a new screening tool in transplantation medicine]. Psychother Psychosom Med Psychol
2006; 56 2:49–55.
38. Thomsen D, Jensen BO. Patients’ experiences of everyday life after lung transplantation. J Clin Nurs
2009; 18 24:3472–3479.
39. Mauthner O, De Luca E, Poole J, Gewarges M, Abbey SE, Shildrick M, et al. Preparation and support of patients through the transplant process: understanding the recipients’ perspectives. Nurs Res Pract
2012; 2012 547312:9 Pages.
40. Tong A, Chapman JR, Israni A, Gordon EJ, Craig JC. Qualitative Research in Organ Transplantation: Recent Contributions to Clinical Care and Policy. Am J Transplant
2013; 13 6:1390–1399.
41. Polit DF, Beck CT. Essentials of Nursing Research. Methods, Appraisal, and Utilization. Philadelphia: Lippincott Williams & Wilkins; 2006.
42. Dew MA, DeVito Dabbs AJ. Harnessing the Power of Qualitative Research in Transplantation. Am J Kidney Dis
2016; 67 3:357–359.
43. Heyes CM, Schofield T, Gribble R, Day CA, Haber PS. Reluctance to Accept Alcohol Treatment by Alcoholic Liver Disease Transplant Patients: A Qualitative Study. Transplantation direct
2016; 2 10:e104.
44. Duerinckx N, Burkhalter H, Engberg SJ, Kirsch M, Klem ML, Sereika SM, et al. Correlates and Outcomes of Posttransplant Smoking in Solid Organ Transplant Recipients: A Systematic Literature Review and Meta-Analysis. Transplantation
2016; 100 11:2252–2263.
45. van Adrichem EJ, van de Zande SC, Dekker R, Verschuuren EA, Dijkstra PU, van der Schans CP. Perceived Barriers to and Facilitators of Physical Activity in Recipients of Solid Organ Transplantation, a Qualitative Study. PLoS ONE
2016; 11 9:e0162725.
46. Taylor S, Pinnock H, Epiphaniou E, Pearce G, Parke H, Schwappach A, et al. A rapid synthesis of the evidence on interventions supporting self-management
for people with long-term conditions: PRISMS - Practical systematic Review of Self-Management
Support for long-term conditions. Health Services and Delivery Research
2014; 2 53:1–580.
47. Moher D, Liberati A, Tetzlaff J, Altman DG. The PRISMA Group. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med
2009; 6 7:e1000097.
48. Lockwood C, Munn Z, Porritt K. Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation. Int J Evid Based Healthc
2015; 13 3:179–187.
49. Joanna Briggs Institute. Joanna Briggs Institute Reviewers’ Manual: 2014 edition. Adelaide, Australia: University of Adelaide; 2014.
50. Munn Z, Porritt K, Lockwood C, Aromataris E, Pearson A. Establishing confidence in the output of qualitative research synthesis: the ConQual approach. BMC Med Res Methodol
2014; 14 1:108.