The authors have declared that no competing interests exist.
Chronic bodily pain after lung transplantation has received little attention. Therefore, the aim was to provide a multidimensional assessment of self-reported chronic pain 1-5 years after lung transplantation and its relationship with self-reported psychological general well-being (PGWB) and self-efficacy. This multicenter, cross-sectional study is a part of the Swedish national study: Self-management after thoracic transplantation (SMATT). In total, 117 lung transplant recipients, all white, due for their yearly follow-up at one (n=35), two (n=28), three (n=23), four (n=20) or five years (n=11) after transplantation were included. Of these, 113 reported their pain on the Pain-O-Meter (POM), which provides information about pain intensity, quality, location, and duration. In addition, they responded to the PGWB instrument and the Self-Efficacy instrument for managing chronic disease. The prevalence of pain was 51% after 1 year, 68 % after 2 years, 69.5 % after 3 years, 75 % after 4 years and 54.5 % after 5 years. Women experienced higher pain intensity and worse sensory and affective burden than men. Psychological general well-being was the main factor that contributed to the experience of pain. Better perceived psychological well-being lowered the odds for pain, while higher self-efficacy reduced the probability of experiencing pain. Many of the lung recipients lacked pain treatment and were uncertain about the reasons behind their pain. Chronic bodily pain is a common and serious symptom up to five years after lung transplantation. Female lung recipients experience more pain and pain related illness than men.
Chronic pain has wide-ranging detrimental effects across various life-domains and also affects health related quality of life (HRQoL) after solid organ transplantation (SOT)
Pain is a complication that might hamper self-management
After liver transplant, 26% of recipients stated that they suffered severe bodily pain
When discussing pain after SOT it is necessary to address Calcineurin-Inhibitor induced Pain Syndrome (CIPS), identified by Grotz et al., 2001
This multicenter, cross-sectional, cohort study is a part of the Swedish national study: Self-management after thoracic transplantation (SMATT). The inclusion criteria were being a lung recipient due for the annual follow-up 1-5 years after lung transplantation at either of the two Thoracic transplant centers in Sweden, Swedish speaking, mentally lucid, not hospitalized and without on-going rejection treatment with high doses of steroids. The main reasons for exclusion were poor health status, declining participation, and language.
During the inclusion period, 204 lung recipients were due for their annual follow-up and thereby eligible for participation in this study. In total, 117 (57 %) were included at 1 yr. (n=35), 2 yrs. (n=28), 3 yrs. (n=23), 4 yrs. (n=20) and 5 yrs. (n=11) after lung transplantation. The patients could only be included once and 113lung recipients (96 %), all white, completed the three measurement instruments.
In order to provide a multidimensional assessment of pain, the
The LuTx were asked to answer the following open questions: When did the pain start?, How did the pain start?, Do you take any pain killers?, How does the pain affect your everyday life?, and What are your own thoughts about the reason behind the pain? This instrument has undergone testing for reliability and validity in different patient populations
The
Self-efficacy was studied by the instrument
The SPSS Statistics 23 (SPSS Inc., IBM Corporation, Armonk, N.Y., USA) was used for analyzing data, which were mainly ordinal. Single-scale ordered category data were summarized with medians and percentiles (P25, P75). The null hypotheses tested are presented together with the statistical analyses that were applied (
1.Explore proportions and describe the prevalence of pain, including pain locations, sensory and affective components, consequences in everyday life, and personal explanation models.
2.Explore possible differences between two unpaired groups, e.g., men and women.
3.Explore possible relationships.
4.Analyze possible explanatory factors.
Permission to carry out the study was granted by the Regional Ethical Review Board of southern Sweden (D-nr. 2014-124). All participants gave their written informed consent and the information they provided was kept confidential and stored by the researchers in accordance with the Swedish personal data act; PuL-(1998:204)
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Chi Square | There is no difference in the proportion of men and women who report pain.Lung recipients on CNI-treatment do not experience more pain than those not on CNI (e.g., rapamycin). |
Mann Whitney U | There is no difference in pain intensity between men and women.There is no difference in psychological general well-being or self-efficacy between those with and without pain. |
Spearman’s rho | There is no relationship between pain intensity and psychological general well-being or self-efficacy. |
Binary linear regressionLogistic regression | Psychological general well-being or self-efficacy does not explain the pain prevalence. |
Indications for transplantation and medication among the 117 included lung recipients are shown in
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Female/Male | 59/58 |
Chronic obstructive pulmonary disease (COPD) | 29 |
Lung fibrosis | 24 |
Cystic fibrosis | 19 |
Lack of Alpha 1- antitrypsin | 19 |
Other | 12 |
Pulmonary arterial hypertension | 7 |
Emphysema | 4 |
Bronchiectasis | 3 |
Double lung | 98 |
Single lung | 18 |
Cyclosporine | 61 |
Tacrolimus | 45 |
Mycophenelate mofetil (MMF) | 79 |
Azathioprine (AZA) | 12 |
Steroids | 63 |
Rapamycine | 34 |
The prevalence of pain was 51% after 1 yr., 68 % after 2 yrs., 69.5 % after 3 yrs., 75 % after 4 yrs., and 54.5 % after 5 yrs. The proportion of recipients with pain did not differ between those on or not on CNIs (e.g., rapamycin).
The three most common pain locations were the chest, back, and legs (
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Regarding the sensory aspect, the most common pain sensation was dull followed by stabbing or burning (
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The pain intensity measured by the POM-VAS ranged from 0-28 cm, and a total VAS score was calculated for each lung recipient. The median POM-VAS was 4 cm (P25=0; P75= 9). The sensory and affective scores were added together to form a total pain intensity score (PIS) for POM-WDS, which ranged from 0-112. The median PIS was 12 (P 25=0; P75=28).
Lung recipients with pain experienced significantly lower psychological general well-being (PGWB) (p=0.021), more anxiety (p=0.047), more depression (p=0.003), and poorer general health (p<0.001) compared to lung recipients without pain. The lung recipients with pain also reported significantly lower self-efficacy (p=0.004).
Linear regression analysis revealed a significant relationship between overall PGWB and Pain Intensity Score (PIS) (Beta -0.481), where the overall PGWB contributes significantly to pain intensity (p=0.005). The overall PGWB seems to explain 21.6 % of the variance of PIS (R Square 0.216). There was also a significant relationship between self-efficacy and PIS (Beta -0.402) where self-efficacy contributes significantly to pain intensity (p≤0.001). Self-efficacy appears to explain 16.2 % of the variance of PIS (R Square 0.162). Thus PGWB seems to be a better predictor of the total PIS than low self-efficacy.
There were no significant differences in the proportions of men and women with pain. Of the participants with pain, 54.1 % were women and 45.9 % men. Among the women, 74.1 % reported pain compared to 59.6% of the men. There were significant differences between male and female lung recipients regarding POM-VAS (p=.010), POM-WDS (p=.015) and PIS (p=.006), where women experienced higher pain intensity as well as worse sensory and affective burden. Female recipients had 1.5 higher odds of experiencing pain when adjusted for PGWB, which was not significant (OR 1.503, 95 % CI 0.666-3.391). PGWB contributed significantly (p=0.028) to the prevalence of pain. Thus, the major factor contributing to lung recipients’ pain is the overall psychological general well-being adjusted for gender. The higher the PGWB, the lower the odds of experiencing pain (OR 0.973, 95 % CI 0.950-0.977) when adjusted for gender. The analysis also showed that when perceived self-efficacy increases, the probability of experiencing pain is significantly (p=0.010) reduced (OR 0.747, 95 % CI 0.598 – 0.933).
The key findings in this study are:
·Chronic pain is very common in the first five years after lung transplantation ranging from 54.5-75 % of lung recipients.
·The most common pain locations are the chest, back, and legs.
·The pain reduces psychological general well-being and self-efficacy.
·Female lung recipients report higher pain intensity and worse sensory and affective burden than male lung recipients.
Chronic pain was more common than we could possibly have imagined. Moderate to severe persistent postsurgical pain occurred in 5-10 % of the patients in a Danish nationwide study of chronic pain after lung transplantation
We did not explore the cause of the pain. However, the pain locations suggest multiple causes such as the incision, CIPS (especially pain in the hands, feet, joints, and head), and the side-effects of immunosuppressive drugs other than CNIs. The chest pain may be due to post thoracotomy pain syndrome (PTPS) that may have an incidence of more than 50 %
The findings reveal that 18 recipients experienced no consequences in their everyday life, suggesting that it is possible to experience pain and still mange one’s daily occupation without limitations. However, in a majority of cases chronic pain affects everyday life, which is supported by the Danish survey
In our study PGWB was reduced, but we do not know whether pain causes anxiety, depression, and poor general health or if reduced PGWB increases the experience of pain. The design does not permit any suggestions or conclusions regarding cause-effect. One concern is that self-efficacy was impaired among LuTX with pain. The ability to achieve certain goals is important for the experience of health and as self-efficacy is a pre-condition for self-management
As recommended in the consensus report on gender differences in pain and analgesia
The limitations of this study are the design and its retrospective nature. The investigation included data from the only two thoracic transplant centers in Sweden with different staffing conditions at the outpatient lung transplant clinic, which possibly affected the recruitment of participants during the study period. The slightly different approach to the care of these recipients in the pre, peri, and postoperative setting contributes to the heterogeneity of the study population. Although this heterogeneity might be considered a weakness, it can also be viewed as a strength because it may accurately represent the cross-section of patients undergoing lung transplantation in Sweden. As pain is a subjective sensation the data are self-reported and thus represent the inside perspective of the recipients’ experience of pain. Consequently, this opens up the possibility of different interpretations of the items pertaining to pain and how pain intensity is rated by the study participants. However, these findings from our clinical research are probably more relevant to the relief of chronic pain after lung transplantation than those from studies involving laboratory animals or healthy, pain-free humans.
The POM has been used among various organ transplant recipients and is therefore known to work in this context. The POM includes both a mechanical VAS and two lists of pain descriptors also present in the MPQ
This is the first multi-dimensional exploration of chronic pain after lung transplantation. It reveals that chronic bodily pain is a common and serious symptom for up to five years after lung transplantation. Female lung recipients experience more pain and pain related illness than men. Consequently, multi-dimensional pain assessment should be performed pre-transplant as well as regularly at follow-up after lung transplantation. It is also necessary to adopt a gender perspective. In addition to providing proper analgesia, an advanced nurse practitioner specialized in pain management and the use of complementary methods might be useful together with patient education aimed at relieving suffering and promoting healthy adaptation and self-efficacy despite pain.
None of the authors have any financial relationship with a commercial entity. This work was supported by the Thure Carlsson foundation.