A systematic review of health-related quality of life and psychological outcomes after lung transplantation

doi:10.1016/j.healun.2015.07.003

The Journal of Heart and Lung Transplantation

Volume 35, Issue 2, February 2016, Pages 195-202

https://doi.org/10.1016/j.healun.2015.07.003 Get rights and content

Background

Lung transplantation (LTx) aims to reduce physical disability and mental distress, extend survival, and improve health-related quality of life (HRQoL). In this systematic review we aimed to: (1) augment evidence regarding measures to assess HRQoL and psychological outcomes after LTx; and (2) summarize HRQoL and psychological outcomes after LTx.

Methods

Validated and standardized instruments with well-known psychometric properties used for assessing HRQoL and psychological outcomes after LTx were identified by means of comprehensive literature searches of PsychINFO and Medline/PubMed, up through March 2014, using the following search terms in various combinations: lung transplantation; physical functioning; symptom experience; mental health; anxiety; depression; distress; social functioning; life satisfaction; and health-related quality of life.

Results

The search strategy identified 371 titles and abstracts. Of these, 279 were retrieved for further assessment and 63 articles selected for final review. Thirty-nine studies were found for HRQoL, 15 for physical functioning, 5 for mental health and 4 for social functioning. A total of 50 psychometric instruments were encountered.

Conclusions

Considerable heterogeneity exists in methodology, operational concepts and applied outcome measures in the existing literature on HRQoL and psychological outcomes after LTx. Nevertheless, the studies generally point to significant improvements in both mental health and HRQoL post-transplant. Further research is warranted utilizing consistent outcome measures, including LTx-specific measures and longitudinal study designs.

Section snippets

Methods

By systematic literature review, validated and standardized outcome measures with well-known psychometric properties were identified that had been applied to evaluate HRQoL and psychological outcomes after LTx. Data extraction and the study review process were conducted following the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA).¹³ In accordance with these guidelines, our systematic review protocol was registered with the International Prospective

Results

The search strategy identified 371 titles and abstracts. Of these, 279 were retrieved for further assessment and 63 selected for inclusion in the final review. All eligible articles were published between 1994 and 2013.

Study characteristics

Study designs used in the 63 eligible studies were not always reported clearly. The majority of the articles (54%) used a cross-sectional study design that predominantly assessed LTx patients 12 months post-operatively or later (68%). The duration of follow-up ranged from 6 months to 8.5 years post-transplant. The average sample size across all studies was 80.1 (range 10 to 287) participants. Examination of the studies that described participants’ age ranges revealed an average participant age

Outcome measures

All studies included in our analysis used at least 1 psychometric instrument. A variety of outcome measures were administered: 50 different psychometric measures in total. Of 13 different HRQoL outcome measures identified, the 36-item Short Form Health Survey (SF-36)¹⁴ was the most commonly used (19 studies). Standardized questionnaires were rarely used to evaluate physical functioning–related issues, such as pain or symptom occurrence; only 7 standardized questionnaires were encountered.

Health-related quality of life after LTx

The majority of studies (n = 32) investigating HRQoL after LTx demonstrated significant improvement in almost all HRQoL domains, except pain, within the first 3 years post-transplant.19, 20, 21, 22 Some investigators even reported the HRQoL of transplant recipients becoming comparable to that of the general population.23, 24 More specifically, improvements in the SF-36 domains were primarily related to better overall general health, physical health, vitality and social functioning; fewer role

Discussion

We identified 63 studies, among which there were 50 different instruments used to evaluate HRQoL and psychological outcomes after LTx. These tools covered 4 distinct dimensions: HRQoL; physical functioning; mental health; and social functioning. A heterogeneous assortment of test instruments was encountered, but rarely were transplant-specific test instruments used, even though lung-specific questionnaires have been developed.47, 48 Although generic instruments are designed to assess overall

Disclosure statement

The authors have no conflicts of interest to disclose.

This study was supported by grants from the Olga Mayenfisch Foundation, the Hartmann-Müller Foundation for Medical Research and the Lunge Zürich.

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Chronic kidney disease after lung transplantation in a changing era
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Citation Excerpt :
In another large cohort study the relative risk of death in non-renal SOT increased to 4.55 in patients with stage 4 and 5 CKD post-transplantation [22]. LTx in general leads to significantly improved Health Related Quality of Life (HRQoL), but lower scores are reported with allograft dysfunction [24,25]. HRQoL in CKD patients without LTx is worse with higher CKD stage [26].
Lung transplant (LTx) physicians are responsible for highly complex post-LTx care, including monitoring of kidney function and responding to kidney function loss. Better survival of the LTx population and changing patient characteristics, including older age and increased comorbidity, result in growing numbers of LTx patients with chronic kidney disease (CKD). CKD after LTx is correlated with worse survival, decreased quality of life and high costs. Challenges lie in different aspects of post-LTx renal care. First, serum creatinine form the basis for estimating renal function, under the assumption that patients have stable muscle mass. Low or changes in muscle mass is frequent in the LTx population and may lead to misclassification of CKD. Second, standardizing post-LTx monitoring of kidney function and renal care might contribute to slow down CKD progression. Third, new treatment options for CKD risk factors, such as diabetes mellitus, proteinuria and heart failure, have entered clinical practice. These new treatments have not been studied in LTx yet but are of interest for future use. In this review we will address the difficult aspects of post-LTx renal care and evaluate new and promising future approaches to slow down CKD progression.
Epidemiology, risk factors, and outcomes of lung retransplantation: An analysis of the International Society for Heart and Lung Transplantation Thoracic Transplant Registry
2022, Journal of Heart and Lung Transplantation
Lung retransplantation is a complex surgical decision that represents the only potential treatment option for recipients suffering from lung allograft failure. We sought to describe the modern landscape of lung retransplantation and to compare the relative importance of selected clinical, donor, and recipient factors on mortality in the year following lung retransplantation.
We conducted a retrospective cohort study of first-time adult recipients of deceased donor lung retransplants reported to the International Society for Heart and Lung Transplantation (ISHLT) Thoracic Transplant Registry from May 2005 through June 2017. In addition to describing the characteristics of lung retransplant recipients, we examined 1 year survival overall, and by initial transplant-retransplant procedure type, recipient age, retransplant indication, and time-to-lung retransplantation (i.e., inter-transplant interval). We used the Somers' D_xy rank correlation statistic for censored data to assess the relative importance of several potential prognostic risk factors for mortality in the year following lung retransplantation.
Our cohort included 1,597 lung retransplant recipients. 2005 was the first year with more than 100 retransplants, and since 2007, 138 to 188 retransplants (approximately 4%-6% of all transplants) were reported annually to the ISHLT Registry. The median inter-transplant interval was 3.4 years (interquartile range: 1.6-6.2 years). Forty-three percent of the cohort had an obliterative bronchiolitis retransplant indication, whereas 17% had primary graft failure. One-third (32%) were retransplanted within 2 years of their primary transplant, and 64% received a double lung transplant both times, whereas 36% received consecutive single lung transplants. Six-month and 1 year survival (82% and 76%) were higher for double-double lung retransplant recipients than for single-single recipients (76% and 69%). The 3 strongest prognostic factors for 1 year mortality were the inter-transplant interval (decreasing hazard with longer intervals), donor age (increasing hazard with older age), and need for mechanical ventilation preceding lung retransplantation.
Retransplants comprise approximately 5% of annual lung transplants worldwide. The factor most strongly associated with 1 year mortality in this population was the duration of time since the primary lung transplant, with a persistent reduction in risk as more time elapses.
Using a novel concept to measure outcomes in solid organ recipients provided promising results
2021, Journal of Clinical Epidemiology
Citation Excerpt :
In our review relating to solid organ transplantation, we found out that most of the recent HRoQL instruments currently in use are not specifically designed for transplant recipients and/or their content was obtained by experts without the patients’ involvement [11]. Our review, as well as some previously published reviews [15–17], revealed the necessity of developing a HRQoL PROM specifically for transplant recipients that is patient-centered throughout its development and assessment process and entails a preference-based methodology. Accordingly, we sought to develop a patient-centered PROM for measuring HRQoL in solid organ recipients.
Efforts to evaluate the health of solid organ transplant recipients are hampered by the lack of adequate patient-reported outcome measures (PROMs) targeting this group. We developed the Transplant ePROM (TXP), which is based on a novel measurement model and administered through a mobile application to fill this gap. The main objective of this article is to elucidate how we derived the weights for different items, and to report initial empirical results.
The nine health items in the TXP were fatigue, skin, worry, self-reliance, activities, weight, sexuality, stooling, and memory. Via an online survey solid organ recipient participating in the TransplantLines Biobank and Cohort study (NCT03272841) were asked to describe and then compare their own health state with six other health states. Coefficients for item levels were obtained using a conditional logit model.
A total of 232 solid organ transplant recipients (mean age: 54 years) participated. The majority (106) were kidney recipients, followed by lung, liver, and heart recipients. Fatigue was the most frequent complaint (54%). The strongest negative coefficients were found for activities and worry, followed by self-reliance and memory.
A set of coefficients and values were developed for TXP. The TXP score approximated an optimal health state for the majority of respondents and recipients of different organs reported comparable health states.
Health items with a novel patient-centered approach provided information for preference-based transplant outcome measure
2020, Journal of Clinical Epidemiology
Citation Excerpt :
This could enhance patient-doctor communication and increase patient engagement in the course of treatment, thus ultimately resulting in higher patient satisfaction and better outcomes [13]. Recent reviews of the use of PROMs in studies on solid-organ transplantation have indicated that most of the PROMs in current use (e.g., the 36-item Short Form Survey [SF-36] and the EQ-5D) are generic, with only a few being specifically related to transplant [14–17]. Another issue is that the contents (i.e., items, questions, attributes) of these PROMs were derived mainly by experts, and many years ago, without any patient involvement.
Patient-reported outcome measures (PROMs) are widely applied to assess perceived health status. To date, no transplant-specific PROM is available for generating a single, standardized score regarding the health status of transplant recipients. The objective of this study is to generate health items for a new patient-centered PROM for organ recipients: the Transplant PROM (TXP).
A five-phase, mixed-method approach was applied to identify and select the health items: scoping literature review, expert meetings, focus-group meetings with organ recipients, a special judgmental task within an online survey, and expert meetings for final selection of health items.
Based on a previously published scoping literature review, a first round of expert meetings, and a total of four focus-group meetings with kidney, lung, and liver transplant recipients (N = 18), a list of 83 relevant health items relating to post-transplant life was selected. In an online survey, 183 transplant recipients selected the 10 most important health items from this list. After evaluating the frequency of selected health items and combining items that assess closely related or similar concepts in the second round of expert meetings, nine health items were chosen to be included in TXP: fatigue, skin, worry/anxiety, self-reliance, activities, weight, sexuality, stooling, and memory/concentration.
The nine TXP health items reflect the most prominent issues transplant recipients experience. The TXP can be administered by means of a mobile phone app.
Heart Failure in Adult Congenital Heart Disease: From Advanced Therapies to End-of-Life Care
2019, Canadian Journal of Cardiology
There is mounting recognition that some of the most urgent problems of adult congenital heart disease (ACHD) are the prevention, diagnosis, and management of heart failure (HF). Recent expert consensus and position statements not only emphasize a specific and pressing need to tackle HF in ACHD (ACHD-HF) but also highlight the difficulty of doing so given a current sparsity of data. Some of the challenges will be addressed by this review. The authors are from 3 different centres; each centre has an established subspeciality ACHD-HF clinic and is able to provide heart transplant, multiorgan transplant, and mechanical support for patients with ACHD. Appropriate care of this complex population requires multidisciplinary ACHD-HF teams evaluate all possible treatment options. The risks and benefits of nontransplant ACHD surgery, percutaneous structural and electrophysiological intervention, and ongoing conservative management must be considered alongside those of transplant strategies. In our approach, advanced care planning and palliative care coexist with the consideration of advanced therapies. An ethos of shared decision making, guided by the patient’s values and preferences, strengthens clinical care, but requires investment of time as well as skilled communication. In this review, we aim to offer practical real-world advice for managing these patients, supported by scientific data where it exists.
Il est de plus en plus admis que la prévention, le diagnostic et la prise en charge de l’insuffisance cardiaque (IC) font partie des problèmes les plus urgents dans le traitement de la cardiopathie congénitale chez l’adulte (CPCA). Les consensus d’experts et les énoncés de position formulés récemment font ressortir la nécessité particulière et urgente de s’attaquer à l’IC dans la CPCA (IC-CPCA), mais aussi la difficulté que pose cette tâche étant donné le peu de données dont on dispose. L’article expose certains des défis à relever. Les auteurs sont rattachés à trois centres différents, chacun doté d’une clinique spécialisée dans l’IC-CPCA et offrant des services de greffe cardiaque, de greffe multiorgane et de soutien artificiel aux patients atteints de CPCA. Pour que les patients de cette population complexe puissent recevoir des soins adéquats, des équipes multidisciplinaires spécialisées dans l’IC-CPCA doivent évaluer toutes les options thérapeutiques possibles. Les risques et les avantages associés à une intervention chirurgicale autre qu’une greffe, à une intervention percutanée visant à effectuer un remodelage structurel et électrophysiologique et à une prise en charge prudente soutenue doivent être envisagés en parallèle avec ceux d’une greffe. En vertu de notre approche, la planification préalable des soins avancés et les soins palliatifs sont tout aussi importants que la prise en considération des traitements avancés. Une culture axée sur la prise de décision partagée, qui tient compte des valeurs et des préférences du patient, rehausse les soins cliniques, mais exige plus de temps ainsi qu’une communication efficace. Nous tentons ici de formuler des conseils pratiques et réalistes pour la prise en charge de ces patients, en nous fondant dans la mesure du possible sur des données scientifiques.
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Original Clinical ScienceA systematic review of health-related quality of life and psychological outcomes after lung transplantation

Background

Methods

Results

Conclusions

Section snippets

Methods

Results

Study characteristics

Outcome measures

Health-related quality of life after LTx

Discussion

Disclosure statement

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Original Clinical Science
A systematic review of health-related quality of life and psychological outcomes after lung transplantation