Skip to main content
Fachgebiete
Automobil + Motoren Bauwesen + Immobilien Business IT + Informatik Elektrotechnik + Elektronik Energie + Nachhaltigkeit Finance + Banking Management + Führung Marketing + Vertrieb Maschinenbau + Werkstoffe Versicherung + Risiko
DE
EN
Bücher
Zeitschriften
Themenseiten
Organisationspsychologie Projektmanagement Marketing Smart Manufacturing
Weitere Formate
Podcasts Webinare Technik Webinare Wirtschaft Kongresse Veranstaltungskalender Awards
Jetzt Einzelzugang starten
Zugang für Unternehmen
Referenzkunden
SLX-Digitalkonferenz: Zukunftswerkstatt 2024

Mehr Umsatz mit Top-Kontakten

Am 7. Mai erfahren Sie, wie Vertriebsteams Leadgenerierung, Leadnurturing und Leadstrategien effizient steuern können.
Erweiterte Suche
Anmelden
nach oben
Quality of Life Research
Erschienen in: Quality of Life Research 7/2016

04.01.2016

Satisfaction with life in adults with Marfan syndrome (MFS): associations with health-related consequences of MFS, pain, fatigue, and demographic factors

verfasst von: Gry Velvin, Trine Bathen, Svend Rand-Hendriksen, Amy Østertun Geirdal

Erschienen in: Quality of Life Research | Ausgabe 7/2016

Einloggen

Aktivieren Sie unsere intelligente Suche, um passende Fachinhalte oder Patente zu finden.

search-config
loading …

Abstract

Purpose

The objective with this study was to explore satisfaction with life (SWL) among adults with Marfan syndrome (MFS) compared to the general Norwegian population and other patient groups and further to examine the associations between SWL and demographic factors, contact with social and health services, MFS-related health problems, chronic pain, and fatigue.

Methods

This is a cross-sectional study with postal questionnaire, including the Satisfaction with Life Scale (SWLS), questions on demographic factors, health-related aspects of MFS, and validated instruments measuring chronic pain (Standardized Nordic Questionnaire) and fatigue (Fatigue Severity Scale). One hundred and seventeen adults with MFS were invited to participate, and 73 (62 %) participated.

Results

The SWLS mean score in adults with MFS was significantly lower than that reported for the general Norwegian population, but similar to or higher than that reported for other patient groups. Only fatigue, aortic dissection, and having regular contact with psychologist showed significant unique contribution to the SWLS score in the hierarchical multiple linear analyses. The total variance explained by the model was 45.2 % p ≤ 0.000, confirming that the combination of independent variables significantly predicted SWLS.

Conclusions

The results reflect that MFS influences people’s SWL and that particularly severe fatigue, aortic dissection, and psychological aspects are associated with lower SWL. This is important to take into account in the clinical work with people with MFS. Further investigation is needed, especially on larger sample groups. Studies with combination of qualitative and quantitative approaches are recommended to obtain more comprehensive and accurate knowledge about the consequences of MFS on satisfaction with life.
Vorheriger Artikel Quality of life increases in patients with painful diabetic neuropathy following treatment with spinal cord stimulation
Nächster Artikel Health-related quality of life questionnaire for polycystic ovary syndrome (PCOSQ-50): development and psychometric properties

Sie haben noch keine Lizenz? Dann Informieren Sie sich jetzt über unsere Produkte:

Springer Professional "Wirtschaft+Technik"

Online-Abonnement

Mit Springer Professional "Wirtschaft+Technik" erhalten Sie Zugriff auf:

  • über 102.000 Bücher
  • über 537 Zeitschriften

aus folgenden Fachgebieten:

  • Automobil + Motoren
  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Elektrotechnik + Elektronik
  • Energie + Nachhaltigkeit
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Maschinenbau + Werkstoffe
  • Versicherung + Risiko

Jetzt Wissensvorsprung sichern!

Jetzt informieren

Springer Professional "Wirtschaft"

Online-Abonnement

Mit Springer Professional "Wirtschaft" erhalten Sie Zugriff auf:

  • über 67.000 Bücher
  • über 340 Zeitschriften

aus folgenden Fachgebieten:

  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Versicherung + Risiko




Jetzt Wissensvorsprung sichern!

Jetzt informieren
Literatur
1.
Kulczycka, L., Sysa-Jedrzcjowska, A., & Robak, E. (2010). Quality of life and satisfaction with life in SLE-patients—The importance of clinical manifestation. Clinical Rheumatology, 29(9), 991–997.CrossRefPubMedPubMedCentral
2.
Lucas-Carrosca, R., den Oudsten, B. C., Eser, E., & Power, M. J. (2014). Using satisfaction with life scale in people with Parkinson’s Disease: A validation Study. Scientific World Journal, 2014, 680659. doi:10.​1155/​2014/​680659.
3.
Østlie, K., Magnus, P., Skjeldal, O. H., Garfelt, B., & Tambs, K. (2011). Mental health and satisfaction with life among upper limb amputees: A Norwegian population-based survey comparing adult acquired major upper limb amputees with a control group. Journal of Disability and Rehabilitation, 33(17–18), 1594–1607.CrossRefPubMed
4.
De Paepe, A., Devereux, R. B., Dietz, H. C., Hennekam, R. C., & Pyeritz, R. E. (1996). Revised diagnostic criteria for the Marfan syndrome. American Journal of Medical Genetic, 62(4), 417–426.CrossRef
5.
Loeys, B. L., Dietz, H. C., Braverman, A. C., Callewaert, B. L., de Backer, J., Devreux, R. B., et al. (2010). The revised Ghent Nosology for the Marfan syndrome. Journal of Medical Genetics, 47(7), 476–485.CrossRefPubMed
6.
Von Kodolitsch, Y., de Backer, J., Schuler, H., Bannas, P., Behzadi, C., Bernhardt, A. M., et al. (2015). Perspectives on the revised Ghent criteria for the diagnosis of Marfan syndrome. The Application of Clinical Genetics, 8, 137–155.CrossRef
7.
Peters, K. F., Horne, R., Kong, F., Francomano, C. A., & Biesecker, B. B. (2001). Living with Marfan syndrome II. Medication adherence and physical activity modification. Clinical Genetics, 60(4), 283–292.CrossRefPubMed
8.
Bathen, T., Velvin, G., Robinson, H. S., & Rand-Hendriksen, S. (2014). Fatigue in adults with Marfan syndrome, occurrence and associations to pain and other factors. American Journal of Medical Genetics, 164A, 1931–1939.CrossRefPubMed
9.
Rand-Hendriksen, S., Johansen, H., Semb, S. O., Geiran, O., Stanghelle, J. K., & Finset, A. (2010). Health-related quality of life with Marfan syndrome: A cross-sectional study of Short Form 36 in 84 adults with verified diagnosis. Genetics in Medicine, 12(8), 517–524.CrossRefPubMed
10.
Peters, K. F., Apse, K. A., Blackford, A., McHugh, B., Michalic, D., & Biesecker, B. B. (2005). Living with Marfan syndrome IV, coping with stigma. Clinical Genetics, 68(1), 6–14.CrossRefPubMed
11.
De Bie, S., De, Paepe. A., Delvaux, I., Davis, S., & Hennekam, R. C. (2004). Marfan syndrome in Europe. A questionnaire study on patients perceptions. Journal of Community Genetics, 7(4), 216–226.CrossRef
12.
Velvin, G., Bathen, T., Rand-Hendriksen, S., & Østertun, Geirdal A. (2015). Work participation in adults with MFS; demographic characteristics, MFS-related health problems, chronic pain and fatigue. American Journal of Clinical Genetics Part A, 167(12), 3082–3090.CrossRef
13.
Peters, K. F., Kong, F., Hanslo, M., Francomano, C., & Biesecker, B. B. (2002). Living with Marfan syndrome III. Quality of life and reproductive planning. Clinical Genetics, 62(2), 110–120.CrossRefPubMed
14.
Van Tongerloo, A., & De Paepe, A. (1998). Psychosocial adaptation in adolescents and young adults with Marfan syndrome: An exploratory study. Journal of Medical Genetics, 35(5), 405–409.CrossRefPubMedPubMedCentral
15.
Velvin, G., Bathen, T., Rand-Hendriksen, S., & Geirdal, A. Ø. (2015). Systematic review of the psychosocial aspects of living with Marfan syndrome. Clinical Genetics, 87(2), 109–116.CrossRefPubMed
16.
Schneider, M. B., Davis, J. G., Boxer, R. A., Fisher, M., & Friedman, S. B. (1990). Marfan syndrome in adolescent and young adults: Psychosocial functioning and knowledge. Journal of Development & Behavioral Pediatrics, 11(3), 122–127.CrossRef
17.
Giarelli, E., Bernhardt, B. A., Mack, R., & Pyeritz, R. E. (2008). Adolescents’ transition to self-management of a chronic genetic disorder. Quality of Health Research, 18(4), 441–457.CrossRef
18.
Rand-Hendriksen, S., Sørensen, I., Holmström, H., Andersson, S., & Finset, A. (2007). Fatigue, cognitive functioning and psychological distress in Marfan syndrome, a pilot study. Psychology Health & Medicine, 12(3), 305–313.CrossRef
19.
Fusar-Poli, P., Klersy, C., Stramesi, F., Callegari, A., Arbustini, E., & Politi, G. (2008). Determinants of quality of life in Marfan syndrome. Journal of Psychosomatic Research, 49, 243–248.CrossRef
20.
Verbraecken, J., Declerck, A., Van de Heyning, P., De Backer, J., & Wouters, E. F. (2001). Evaluation of sleep apnea in patients with Ehlers–Danlos syndrome and Marfan: A questionnaire study. Clinical Genetics, 60(5), 360–365.CrossRefPubMed
21.
Foran, J. R. H., Pyeritz, R. E., Dietz, H. C., & Sponseller, P. D. (2005). Characterization of the symptoms associated with dural ectasia in the Marfan patients. American Journal of Medical Genetics, 134A, 58–65.CrossRefPubMed
22.
Strine, T. W., Daniel, P., Chapman, Æ., Lina, S., Balluz, Æ., David, G., et al. (2008). The association between life satisfaction and heath related quality of life, chronic illness and health behaviors among U.S. community-dwelling adults. Journal of Community Health, 33, 40–50.CrossRefPubMed
23.
Pavot, W., & Diener, E. (1993). Review of the Satisfaction with Life Scale. Psychological Assessment, 5, 164–172.CrossRef
24.
Pavot, W., & Diener, E. (2008). The Satisfaction with Life Scale and the emerging construct of life satisfaction. Journal of Positive Psychology, 3, 137–152.CrossRef
25.
Pavot, W., Diener, E., Colvin, C. R., & Sandvik, E. (1991). Further validation of the Satisfaction with Life Scale: evidence for the cross-method convergence of well-being measures. Journal of Personality Assessment, 57(1), 149–161.CrossRefPubMed
26.
Diener, E., Oishi, S., & Lucas, R. (2003). Personality, culture and subjective well-being: Emotional and cognitive evaluations of life. Annual Review of Psychology, 54, 403–425.CrossRefPubMed
27.
Tesch-Romer, C., Motel-Klingebiel, A., & von Kondratowitz, H. J. (2003). Quality of life. In A. Lowenstein, & J. Ogg (Eds.), Old age and autonomy. The role of service systems and intergenerational family solidarity (pp. 259–284). Israel: OASIS: University of Haifa, Final report.
28.
Bowling, A. (1995). What things are important in people’s lives? A survey of the public’s judgments to inform scales of health related quality of life. Social Science and Medicine, 41(10), 1447–1462.CrossRefPubMed
29.
Bowling, A., & Windsor, J. (2001). Towards the good life: A population survey of dimensions of quality of life. Journal of Happiness Studies, 2(1), 55–81.CrossRef
30.
Diener, E., Emmons, R. A., Larson, R. J., & Griffin, S. (1985). The Satisfaction with Life Scale. Journal of Personality Assessment, 49(1), 71–75.CrossRefPubMed
31.
32.
Loewe, N., Bagherzadeh, M., Araya-Castillo, L., Thieme, C., & Bastista-Foquet, J. M. (2014). Life domains satisfaction as predictors of overall life satisfaction among workers. Evidence from Chile. Social Indicators Research, 118(1), 71–86.CrossRefPubMedPubMedCentral
33.
Rand-Hendriksen, S. (2010). Marfan syndrome—A diagnostic challenge. Aspects of a Norwegian cohort study. University of Oslo: Faculty of Medicine. Dissertation for the Degree of PHD.
34.
Farquhar, M. (1995). Elderly people’s definitions of quality of life. Social Science and Medicine, 41(10), 1439–1446.CrossRefPubMed
35.
Viren, S., & Chamorro-Premuzic, T. (2009). Psychometric evaluation of the Malay Satisfaction with Life Scale. Social Indicators Research, 92, 25–33.CrossRef
36.
Vassar, M. (2008). A note on the score reliability for the Satisfaction with Life Scale: An RG study. Social Indicators Research, 86, 47–57.CrossRef
37.
Luca-Carrasco, R., & Salvador-Carulla, L. (2012). Life satisfaction in persons with intellectual disabilities. Research in Development Disability, 33(4), 1103–1109.CrossRef
38.
Clench-Aas, J., Bang-Nes, R., Dalgard, O. S., & Aarø, L. E. (2011). Dimensionality and measurement invariance in the Satisfaction with Life Scale in Norway. Journal of Quality of Life Research, 20(8), 1307–1317.CrossRefPubMed
39.
40.
Bang Nes, R., & Clench-Aas, J. (2011). Psychological health in Norway. Survey Report. International Comparisons report nr.2 (Psykisk helse i Norge. Tilstandsrapport med internasjonale sammenligninger 2011:2). Institute of public Health in Norway Report 2.
41.
Lucas-Carrasco, R., Sastre-Garriga, J., Galàn, I., Den Oudsten, B. L., & Power, M. J. (2014). Preliminary validation of the Spanish version of the Satisfaction with Life Scale in persons with multiple sclerosis. Disability and Rehabilitation, 36(12), 1001–1005.CrossRefPubMed
42.
43.
Meyer, C., Rumph, H. J., Hapke, U., & John, U. (2004). Impact of psychiatric disorders in the general population: Satisfaction with life and the influence of comorbidity and disorder duration. Social Psychiatry and Psychiatric Epidemiology, 39(6), 435–441.CrossRefPubMed
44.
Kuorinka, I., Jonsson, B., Kilbom, A., Vinterberg, H., Biering-Sørensen, F., Andersson, G., & Jørgensen, K. (1987). Standardized Nordic Questionnaires for the analysis of musculoskeletal symptoms. Applied Ergonomics, 18, 233–237.CrossRefPubMed
45.
Svebak, S., Hagen, K., & Zwart, J. A. (2006). One-year prevalence of chronic musculoskeletal pain in a large adult Norwegian county population: Relations with age and gender—The HUNT study. Journal of Musculoskeletal Pain, 14, 21–28.CrossRef
46.
Krupp, L. B., La Rocca, N. G., Muir-Nash, J., & Steinberg, A. D. (1989). The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Journal of Archives of Neurology, 46, 1121–1123.CrossRefPubMed
47.
Lerdal, A., Wahl, A. K., Rustøen, T., Hanestad, B. R., & Moum, T. (2005). Fatigue in the general population: A translation and test of the psychometric properties of the Norwegian version of the fatigue severity scale. Scandinavian Journal of Public Health, 33, 123–130.CrossRefPubMed
48.
49.
Lidal, I. B., Hjeltnes, N., Roisland, J., Stanghelle, J. K., & Biering-Sørensen, F. (2009). Employment of persons with spinal cord lesions injured more than 20 years ago. Disability and Rehabilitation, 31(26), 2174–2184.CrossRefPubMed
50.
Fernandez, R. M., & Kulik, J. C. (1981). A multilevel model of life satisfaction: Effects of individual characteristics and neighborhood composition. American Sociological Review, 46(6), 840–850.CrossRef
51.
Haug, M. R., & Folmar, S. J. (2000). Longevity, gender, and life quality. Journal of Health and Social Behavior, 27(4), 332–345.CrossRef
52.
Hao, L., & Johnson, R. W. (2000). Economic, cultural and social origins of emotional well-being. Research on Aging, 22(6), 599–629.CrossRef
53.
Steinhaug, S. (2007). Women’s strategies for handling chronic muscle pain. A quality study. Scandinavian Journal of Primary Health Care, 25, 44–48.CrossRef
54.
Werner, A., Isaksen, L. W., & Malterud, K. (2004). I am not the kind of woman who complains of everything: Illness stories on self and shame in women with chronic pain. Social Science and Medicine, 59(85), 1035–1046.CrossRefPubMed
55.
Lecovich, E., & Isralowitz, R. E. (2004). Visual impairments, functional and health status, and life satisfaction among elderly bedouins in Israel. Journal of Aging International, 29(1), 71–87.CrossRef
56.
Brown, R. L., & Barrett, A. E. (2011). Visual impairment and quality of life among older adults: An examination of explanations for the relationship. Oxford Journals Medicine & Health & Social Sciences. The Journals of Gerontology, 66B(3), 364–373.CrossRef
57.
58.
Stålnacke, B. M. (2011). Life satisfaction in patients with chronic pain-relation to pain, intensity, disability and psychological factors. Journal of Neuropsychiatric Disease and Treatment, 7, 683–689.CrossRefPubMed
59.
Boonstra, A. M., Michiel, F., Reneman, R., Stewart, E., Post, M. W., & Schiphorst, H. (2013). Life satisfaction in patients with chronic musculoskeletal pain and its predictors. Quality of Life Research, 22(1), 93–101.CrossRefPubMed
60.
Börsbo, B., Peolsson, M., & Gerdle, B. (2009). The complex interplay between pain intensity, depression, anxiety and catastrophising with respect to quality of life and disability. Disability and Rehabilitation, 31(19), 1605–1613.CrossRefPubMed
61.
McNamee, P., & Mendolia, S. (2014). The effect of chronic pain on life satisfaction: Evidence from Australian data. Social Science and Medicine, 121, 65–73.CrossRefPubMed
62.
Maynard, F. M., & Roller, S. (1991). Recognizing typical coping styles of polio survivors can improve re-rehabilitation. A commentary. American Journal of Physical Medicine and Rehabilitation, 2(70), 70–72.CrossRef
63.
Percheron, G., Fayet, G., Ningler, T., Le Parc, J. M., Denot-Ledunois, S., Leroy, M., et al. (2007). Muscle strength and body composition in adult women with Marfan syndrome. Rheumatology, 46, 957–962.CrossRefPubMed
64.
Dijk, Van., Boer, M. C., Mulder, B. J., van Montfrans, G. A., & Wieling, W. (2008). Is fatigue in Marfan syndrome related to orthostatic intolerance?. Clinical Autonomic Research, 18, 187–193.CrossRefPubMed
65.
Voermans, N. C., Knoop, H., Bleijenberg, G., & van Engelen, B. G. (2010). Pain in Ehlers-Danlos syndrome is common, severe, and associated with functional impairment. Journal of Pain Symptom Management, 40, 370–378.CrossRefPubMed
66.
Bultman, U., Kant, I., Kasl, S. V., Beurskens, A. J., & van den Brandt, P. A. (2001). Fatigue and psychological distress in the working population: Psychometrics, prevalence, and correlates. Journal of Psychosomatic Research, 52, 445–452.CrossRef
67.
Targum, S. D., & Fava, M. (2011). Fatigue as a residual symptom of depression. Innovation in Clinical Neuroscience, 8(10), 40–43.
68.
Harder, H. G., Rash, J. A., & Nelson, S. (2012). Influence of labor participation among persons with disabilities: A systematic review and best evidence synthesis. International Journal of Disability Management, 7, 10–26.CrossRef
69.
Ricci, J. A., Chee, E., Lorandeau, A. L., & Bergern, J. (2007). Fatigue in the US workforce: Prevalence and implications for lost productive work time. JOEM, Journal of Occupational and Environmental Medicine, 49(1), 1–10.CrossRefPubMed
70.
Van der Hiele, K., Middelkoop, H. A., Ruimschotel, R., Kamminga, N. G., & Visser, L. H. (2014). A pilot study on factors involved with work participation in the early stages of multiple sclerosis. PLoS One, 9(8), 1–7.
Metadaten
Titel
Satisfaction with life in adults with Marfan syndrome (MFS): associations with health-related consequences of MFS, pain, fatigue, and demographic factors
verfasst von
Gry Velvin
Trine Bathen
Svend Rand-Hendriksen
Amy Østertun Geirdal
Publikationsdatum
04.01.2016
Verlag
Springer International Publishing
Erschienen in
Quality of Life Research / Ausgabe 7/2016
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1214-1

Weitere Artikel der Ausgabe 7/2016

Quality of Life Research 7/2016 Zur Ausgabe

Brief Communication

The EORTC QLQ-CR29 quality of life questionnaire for colorectal cancer: validation of the Dutch version

OriginalPaper

Translation, validity and reliability of the British Sign Language (BSL) version of the EQ-5D-5L

OriginalPaper

On the effect of adding clinical samples to validation studies of patient-reported outcome item banks: a simulation study

OriginalPaper

Mode effects between computer self-administration and telephone interviewer-administration of the PROMIS® pediatric measures, self- and proxy report

OriginalPaper

Demographics, social position, dental status and oral health-related quality of life in community-dwelling older adults

OriginalPaper

Health-related quality of life questionnaire for polycystic ovary syndrome (PCOSQ-50): development and psychometric properties