Symptom Occurrence and Distress after Heart Transplantation—A Nationwide Cross-Sectional Cohort Study
Abstract
:1. Introduction
2. Patients and Methods
2.1. Data Collection
Instruments
- To explore psychological well-being and illness the Swedish version of the Psychological General Well-Being (PGWB) instrument was used [17]. This instrument consists of 22 items constituting six dimensions: anxiety, depressed mood, general health, positive well-being, self-control, and vitality. It contains a six-point scale with each domain comprising three to five items. The timeframe is specified as the previous seven days. A normal PGWB sum score is between 100 and 105 and the highest sum score is 132 [18]. Poor psychological well-being is identified if the sum score is below 100 [19]. The instrument has good internal consistency, where Cronbach’s Alpha ranges from 0.61–0.89. [17].
- To explore transplant specific well-being and symptom distress, The Organ Transplant Symptom and Well-being Instrument (OTSWI) was used [20]. The instrument comprises 20 questions constituting eight factors that measure fatigue, joint and muscle pain, cognitive functioning, basic activities of daily life (BADL), sleep problems, mood, foot pain and financial situation. The internal convergent validity was satisfactory, the item-scale discriminatory validity was good and together the eight factors accounted for 86% of the variance. Each response relates to the discomfort of a situation or problem, assessed on a five-point scale ranging from “not at all (0), “a little” (1), “somewhat” (2) and “quite a bit” (3) to “very much” (4). The timeframe is specified as the previous seven days. The scale has a sum score of 0–80 where lower scores indicate higher well-being. The OTSWI also measures symptom distress by the degree of discomfort from twenty transplant specific symptoms graded in the same way as the previous scale from “not at all” (0), to “very much” (4) [20].
2.2. Statistical Analysis
- Explore proportions (Chi square test) and describe the occurrence of symptoms and symptom distress.
- Explore possible differences between two unpaired groups, e.g., men and women, by means of the Mann Whitney U test.
- (1)
- Explore possible relationships by means of the Spearman’s rho test.
- (2)
- Linear multiple regression was used to assess dimensions that could explain the variation in transplant related well-being (OTSWI-sum) without controlling for the influence of age and gender as there were no gender or age differences in the dimensions assessed.
- (3)
- Logistic regression was adopted specifically to assess how much of the variance in Psychological General Well-Being (PGWB-sum) was explained by sleep problems and fatigue, where the PGWB-sum constituted the categorical dependent variable.
2.3. Ethical Considerations
3. Results
3.1. Symptom Occurrence in the Different Sub-Groups
3.2. Gender Differences
3.3. Clinical Factors
3.4. Symptom Burden and Psychological Well-Being
3.5. Relationships and Possible Predictors
4. Discussion
- Symptom occurrence after HTx varies depending on type of symptom and follow-up year. Trembling hands and decreased libido are prominent regardless of follow-up time, while other symptoms are more common in the first year after transplantation, i.e., feeling breathless or bloated.
- The most common symptoms, trembling hands and decreased libido are also the most distressing.
- The HTRs most burdened by symptoms are most likely to be found among those younger than 50 years, who are not working, have poor psychological well-being or live alone.
- Fatigue explains more than 60% of the variation in transplant specific well-being (OTSWI-sum) followed by sleep problems.
4.1. The Magnitude of the Problem
4.2. Symptom Occurrence in Different Sub-Groups
4.3. Gender Differences
4.4. Psychological Well-Being
4.5. Consequences and Implications
4.6. Methodological Considerations, Limitations, and Strengths
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
- Ponikowski, P.; Voors, A.A.; Anker, D.S.; Bueno, H.; Cleland, J.G.F.; Coats, A.J.S.; Falk, V.; Ramón Gonzales-Juanatey, J.; Harjola, V.-P.; Jankowska, E.A.; et al. 2016 ESC Guidelines for the treatment of acute and chronic heart failure: The task force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC). Eur. Heart J. 2016, 18, 891–975. [Google Scholar] [CrossRef] [PubMed]
- Lundh, L.H.; Khush, K.K.; Cherikh, W.S.; Goldfarb, S.; Kucheryavaya, A.Y.; Levvey, B.J.; Meiser, B.; Rossano, J.W.; Chambers, D.C.; Yusen, R.D.; et al. The registry of the international society for heart and lung transplantation: Fourty-fourth adult heart transplantation report—2017; Focus theme: Allograft ischemic time. J. Heart Lung Transpl. 2017, 36, 1037–1046. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Stiefel, P.; Malehsa, D.; Bara, C.; Strueber, M.; Haverich, A.; Kugler, C. Symptom experiences in patients after heart transplantation. J. Health Psychol. 2012, 18, 680–692. [Google Scholar] [CrossRef] [PubMed]
- Almgren, M.; Lennnerling, A.; Lundmark, M.; Forsberg, A. The meaning of being in uncertainty after heart transplantation—An unrevealed source to distress? Eur. J. Cardiovasc. Nurs. 2017, 16, 167–174. [Google Scholar] [CrossRef] [PubMed]
- Mauthner, O.E.; Luca, E.; Pool, J.M.; Abbey, S.; Shildrick, M.; Gewarges, M.; Ross, H. Heart transplants: Identity disruption, bodily integrity and interconnectedness. Health 2015, 19, 578–594. [Google Scholar] [CrossRef] [PubMed]
- Tackman, E.; Dettmer, S. Health-related quality of life in adult heart-transplant recipients—A systematic review. Herz 2018. [Google Scholar] [CrossRef] [PubMed]
- Dew, A.M.; Rosenberger, E.M.; Myaskovsky, L.; DiMartini, A.F.; De Vito Dabbs, A.J.; Posluszny, D.M.; Steel, J.; Switzer, G.; Shellmer, D.; Greenhouse, J. Depression and anxiety as risk factors for morbidity and mortality after organ transplantation: A systematic review and meta-analysis. Transplantation 2015, 100, 988–1003. [Google Scholar] [CrossRef] [Green Version]
- Dalvindt, M.; Kisch, A.; Nozhoor, S.; Lennerling, A.; Forsberg, A. Chronic Pain 1–5 years after heart transplantation. Nurs. Open 2020, 7, 1146–1156. [Google Scholar] [CrossRef]
- Richard, A.A.; Shea, K. Delineation of self-care and associated concepts. J. Nurs. Scholarsh. 2011, 43, 255–264. [Google Scholar] [CrossRef]
- Berben, L.; Denhaerynck, K.; Dobbels, F.; Engberg, S.; Vanhaecke, J.; Crespo-Leiro, M.G.; Russell, C.L.; De Geest, S. Building research initiative group: Chronic illness management and adherence in transplantation (BRIGHT) study: Study protocol. J. Adv. Nurs. 2015, 71, 642–654. [Google Scholar] [CrossRef] [Green Version]
- Been-Dahmen, J.M.J.; Beck, D.K.; Peeters, M.A.C.; Van der Stege, H.; Tielen, M.; Buren, M.C.; Ista, E.; van Staa, A.; Kassey, E.K. Evaluating the feasibility of a nurse-led self-management support intervention for kidney transplant recipients: A pilot study. BMC Nephrol. 2019, 20. [Google Scholar] [CrossRef] [PubMed]
- World Health Organization. Innovative Care for Chronic Conditions–Building Blocks for Action; World Health Organisation: Geneva, Switzerland, 2002. [Google Scholar]
- Almgren, M.; Lennerling, A.; Lundmark, M.; Forsberg, A. Self-efficacy in the context of heart transplantationa new perspective. J. Clin. Nurs. 2017, 26, 3007–3017. [Google Scholar] [CrossRef]
- Thorne, S.; Paterson, B.; Russell, C. The structure of everyday self-care decision making in chronic illness. Qual Health Res. 2003, 13, 1337–1352. [Google Scholar] [CrossRef]
- Dodd, M.; Janson, S.; Facione, N.; Faucett, J.; Froelicher, S.E.; Humphreys, J.; Lee, K.; Miaskowski, C.; Puntillo, K.; Rankin, S.; et al. Advancing the science of symptom management. J. Adv. Nurs. 2001, 33, 668–676. [Google Scholar] [CrossRef]
- Sidani, S. Self care. In Nursing Outcomes: The State of the Science, 2nd ed.; Doran, D., Ed.; Jones and Bartlett: Sudbury, MA, USA, 2011; pp. 131–200. [Google Scholar]
- Wiklund, I.; Karlberg, J. Evaluation of quality of life in clinical trials. Selecting quality-of-life measures. Control. Clin. Trials 1991, 12, 204–216. [Google Scholar] [CrossRef]
- Dimenäs, E.; Carlsson, G.; Glise, H.; Israelsson, B.; Wiklund, I. The relevance of norm values as part of documentation of quality of life instruments for use in upper gastrointestinal disease. Scand. J. Gastroenerol. Suppl. 1996, 31, 8–13. [Google Scholar] [CrossRef] [PubMed]
- Dupuy, H.J. The psychological general well-being (PGWB) index. In Assessment of Quality of Life in Clinical Trials of Cardiovascular Therapies; Wender, N.K., Mattson, M.E., Furberg, C.D., Le Jacq, E.J., Eds.; Le Jacq Publishing: New York, NY, USA, 1984; pp. 170–183. [Google Scholar]
- Forsberg, A.; Persson, L.-O.; Nilsson, M.; Lennerling, A. The organ transplant symptom and well-being instrument—Psychometric evaluation. Open Nurs. J. 2012, 6, 30–40. [Google Scholar] [CrossRef]
- Rang, H.P.; Dale, M.M.; Ritter, J.M.; Flower, R.J.; Henderson, G. Rang and Dale’s Pharmacology, 7th ed.; Elsevier: Amsterdam, The Netherlands; Churchill Livingstone: London, UK, 2012; p. 330. [Google Scholar]
- Chou, Y.-Y.; Lai, Y.-H.; Wang, S.-S.; Shun, S.-C. Impact of fatigue characteristics on quality of life in patients after heart transplantation. J. Cardiovasc. Nurs. 2017, 32, 551–559. [Google Scholar] [CrossRef]
- Tabler, J.B.; Frierson, R.L. Sexual concerns after heart transplantation. J. Heart Transpl. 1990, 9, 397–403. [Google Scholar]
- Hasin, T.; Jaarsma, T.; Murninkas, D.; Setareh-Shenas, S.; Yaari, V.; Bar-Yosef, S.; Medalion, B.; Gerber, Y.; Ben-Gal, T. Sexual function in patients supported with left ventricular assist device and with heart transplant. ESC Heart Fail. 2014, 1, 103–109. [Google Scholar] [CrossRef] [Green Version]
- Phan, A.; IsHak, W.W.; Shen, B.-J.; Fuess, J.; Philip, K.; Bresee, C.; Czer, L.; Schwarz, E.R. Persistent sexual dysfunction impairs quality of life after cardiac transplantation. J. Sex. Med. 2010, 18, 2765–2773. [Google Scholar] [CrossRef]
- Grady, K.L.; Andrei, A.-C.; Li, Z.; Rybarczyk, B.; White-Williams, C.; Gordon, R.; McGee, E.C. Gender differences in appraisal of stress and coping 5 years after heart transplantation. Heart Lung 2016, 45, 41–47. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Forsberg, A. Main concerns due to transplantation among European solid organ recipients. A survey by the European Society of Organ Transplantation. 2020. Available online: www.esot.org (accessed on 30 September 2020).
- Lundmark, M.; Lennerling, A.; Almgren, A.; Forsberg, A. Recovery, symptoms, and well-being one to five years after lung transplantation—A multicentre stydy. Scand. J. Caring Sci. 2018, 33, 176–184. [Google Scholar] [CrossRef]
- Söderlund, C.; Rådegran, G. Immunosuppressive therapies after heart transplantation—The balance between under- and over-immunosuppression. Transplant. Rev. 2015, 29, 181–189. [Google Scholar] [CrossRef] [PubMed]
- Promer, E. Calcineurin-inhibitor pain syndrome. Clin. J. Pain 2012, 28, 556–559. [Google Scholar] [CrossRef]
- Kristensson, U. Homo Capax Texter av Paul Ricoeur; Daidalos AB: Gothenburg, Sweden, 2011. [Google Scholar]
- Cavallini, J.; Forsberg, A.; Lennerling, A. Social function after solid organ transplantation: An integrative review. Nord. J. Nurs. Res. 2015, 35, 227–234. [Google Scholar] [CrossRef]
Variable | N (%) |
---|---|
Female | 25 (32) |
Male | 54 (68) |
Indications for transplantation | |
Dilated cardiomyopathy (different forms) | 63 (80) |
Other (e.g., hereditary conditions) | 7 (9) |
Congenital heart disease | 4 (5) |
Ischemic heart disease | 4 (5) |
Eisenmenger | 1 (1) |
Mechanical assistant device and time on ventilator | |
Left ventricular assist device before Htx | 24 (30) |
> 48 h on ventilator after Htx | 16 (20) |
< 48 h on ventilator after Htx | 61 (77) |
Missing data regarding ventilator | 2 (3) |
Immunosuppressive medication and rejections | |
Cyclosporin | 18 (23) |
Tacrolimus | 59 (75) |
Mycophenolic acid | 72 (91) |
Azathioprine | 3 (4) |
Steroids | 20 (25) |
Other drugs (for example Everolimus) | 23 (29) |
Persons having one or more cellular rejections | 23 (29) |
Symptom | Not at All (%) | A Little Bit (%) | Somewhat (%) | Quite a Bit (%) | Very Much (%) |
---|---|---|---|---|---|
I am breathless * | 55 | 33 | 8 | 3 | 0 |
I need to rest because I am breathless * | 68 | 22 | 8 | 1 | 0 |
I am bloated * | 69 | 23 | 6 | 1 | 0 |
I feel nauseous * | 82 | 1 | 3 | 3 | 0 |
I have oral fungus * | 96 | 4 | 0 | 0 | 0 |
I have oral herpes * | 88 | 12 | 0 | 0 | 0 |
I have increased appetite * | 58 | 28 | 6 | 3 | 0 |
I have decreased appetite * | 91 | 3 | 5 | 1 | 0 |
I have dyspepsia * | 71 | 26 | 3 | 1 | 0 |
I am constipated * | 87 | 12 | 1 | 0 | 0 |
I have diarrhoea ** | 70 | 22 | 1 | 5 | 1 |
My skin is itchy ** | 81 | 13 | 5 | 1 | 0 |
I have headache | 57 | 28 | 10 | 3 | 1 |
There is a burning pain in my hands * | 91 | 6 | 0 | 1 | 1 |
There is a numb and stabbing pain in my hands * | 79 | 13 | 5 | 0 | 3 |
My hands are trembling * | 45 | 32 | 15 | 4 | 3 |
I feel dizzy * | 58 | 33 | 4 | 3 | 3 |
I feel sad ** | 60 | 22 | 13 | 4 | 1 |
My looks make me embarrassed * | 74 | 18 | 5 | 3 | 0 |
My libido is decreased * | 50 | 29 | 8 | 6 | 6 |
Symptom | 1 Year n = 28 (%) | 2 Years n = 17 (%) | 3 Years n = 11 (%) | 4 Years n = 17 (%) | 5 Years n = 6 (%) |
---|---|---|---|---|---|
I am breathless * | 59 | 44 | 27 | 30 | 50 |
I need to rest because I am breathless * | 48 | 31 | 9 | 12 | 33 |
I am bloated * | 50 | 18 | 27 | 24 | 17 |
I feel nauseous * | 25 | 24 | 18 | 0 | 33 |
I have oral fungus * | 0 | 6 | 0 | 12 | 0 |
I have oral herpes * | 14 | 6 | 18 | 5 | 17 |
I have increased appetite * | 52 | 35 | 45 | 24 | 67 |
I have decreased appetite * | 15 | 6 | 9 | 6 | 0 |
I have dyspepsia * | 42 | 12 | 27 | 24 | 50 |
I am constipated * | 19 | 18 | 9 | 6 | 0 |
I have diarrhoea ** | 39 | 18 | 46 | 12 | 50 |
My skin is itchy ** | 31 | 12 | 9 | 18 | 17 |
I have headache | 52 | 30 | 36 | 24 | 50 |
There is a burning pain in my hands * | 4 | 18 | 0 | 6 | 33 |
There is a numb and stabbing pain in my hands * | 23 | 30 | 9 | 12 | 33 |
My hands are trembling * | 60 | 60 | 46 | 41 | 67 |
I feel dizzy * | 41 | 41 | 64 | 29 | 50 |
I feel sad ** | 35 | 30 | 55 | 35 | 50 |
My looks make me embarrassed * | 33 | 24 | 9 | 26 | 33 |
My libido is decreased * | 44 | 59 | 46 | 47 | 67 |
Rank Order | Most Prevalent Symptom | Most Distressing Symptom |
---|---|---|
1 | My hands are trembling | My hands are trembling |
2 | My libido is decreased | My libido is decreased |
3 | I am breathless | I feel sad |
4 | I have increased appetite | I have headache |
5 | I have headache | I am breathless |
6 | I feel dizzy | I need to rest because I am breathless |
7 | I feel sad | I have increased appetite |
8 | I need to rest because I am breathless | I feel dizzy |
9 | I am bloated | I am bloated |
10 | I have diarrhoea | I have diarrhoea |
Variable | N (%) |
---|---|
Marital status | |
Single | 15 (19) |
Married/Cohabiting | 51 (65) |
Divorced/separated | 13 (16) |
Living arrangements | |
Living alone | 20 (25) |
Single with children | 3 (4) |
Cohabiting without children | 30 (38) |
Cohabiting with children | 13 (17) |
Other | 10 (13) |
Missing | 3 (3) |
Level of education | |
Primary | 7 (9) |
Second level | 46 (58) |
University level | 26 (33) |
Employment status | |
Employed (full time/part time) | 32 (40) |
Not employed | 33 (42) |
Own company-working | 9 (11) |
Own company-not working | 3 (4) |
Missing data | 2 (3) |
Work ability | |
Able to work fulltime/part time | 54 (68) |
Unable to work or study | 20 (25) |
Missing data | 5 (7) |
Sick leave or retired | |
Temporary sick leave full time/part time | 18 (23) |
Permanent sick leave full time/part time | 14 (18) |
Retired | 14 (18) |
Symptom | Good Psychological Well-Being (%) | Poor Psychological Well-Being (%) | p-Value |
---|---|---|---|
Sleep problems | 81 | 92 | 0.004 |
Fatigue | 63 | 89 | 0.007 |
Mood | 27 | 59 | 0.002 |
I am worried about my financial situation | 41 | 62 | 0.020 |
I am breathless * | 30 | 60 | 0.012 |
I need to rest because I am breathless * | 19 | 38 | 0.011 |
I am bloated * | 19 | 41 | 0.036 |
I have increased appetite * | 30 | 51 | 0.025 |
I have headache | 27 | 57 | 0.003 |
My hands are trembling * | 40 | 68 | 0.011 |
I feel sad ** | 19 | 61 | ≤0.001 |
My looks make me embarrassed * | 5 | 41 | ≤0.001 |
My libido is decreased | 54 | 41 | NS |
p | Odds Ratio | 95.0% C.I. for Odds Ratio | ||
---|---|---|---|---|
Lower | Upper | |||
Age | 0.046 | 0.964 | 0.929 | 0.999 |
Sex | 0.352 | 0.584 | 0.188 | 1.813 |
OTSWI-Fatigue | 0.003 | 1.430 | 1.128 | 1.814 |
Constant | 0.226 | 3.833 |
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Dalvindt, M.; Nozohoor, S.; Kisch, A.; Lennerling, A.; Forsberg, A. Symptom Occurrence and Distress after Heart Transplantation—A Nationwide Cross-Sectional Cohort Study. Int. J. Environ. Res. Public Health 2020, 17, 8052. https://doi.org/10.3390/ijerph17218052
Dalvindt M, Nozohoor S, Kisch A, Lennerling A, Forsberg A. Symptom Occurrence and Distress after Heart Transplantation—A Nationwide Cross-Sectional Cohort Study. International Journal of Environmental Research and Public Health. 2020; 17(21):8052. https://doi.org/10.3390/ijerph17218052
Chicago/Turabian StyleDalvindt, Marita, Shahab Nozohoor, Annika Kisch, Annette Lennerling, and Anna Forsberg. 2020. "Symptom Occurrence and Distress after Heart Transplantation—A Nationwide Cross-Sectional Cohort Study" International Journal of Environmental Research and Public Health 17, no. 21: 8052. https://doi.org/10.3390/ijerph17218052