Skip to main content
Top
Gepubliceerd in:

01-07-2016

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

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

Gepubliceerd in: Quality of Life Research | Uitgave 7/2016

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.
Literatuur
1.
go back to reference 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 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.
go back to reference 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. 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference Pavot, W., & Diener, E. (1993). Review of the Satisfaction with Life Scale. Psychological Assessment, 5, 164–172.CrossRef Pavot, W., & Diener, E. (1993). Review of the Satisfaction with Life Scale. Psychological Assessment, 5, 164–172.CrossRef
24.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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. 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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
32.
go back to reference 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 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.
go back to reference 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. 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.
go back to reference Farquhar, M. (1995). Elderly people’s definitions of quality of life. Social Science and Medicine, 41(10), 1439–1446.CrossRefPubMed Farquhar, M. (1995). Elderly people’s definitions of quality of life. Social Science and Medicine, 41(10), 1439–1446.CrossRefPubMed
35.
go back to reference Viren, S., & Chamorro-Premuzic, T. (2009). Psychometric evaluation of the Malay Satisfaction with Life Scale. Social Indicators Research, 92, 25–33.CrossRef Viren, S., & Chamorro-Premuzic, T. (2009). Psychometric evaluation of the Malay Satisfaction with Life Scale. Social Indicators Research, 92, 25–33.CrossRef
36.
go back to reference 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 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.
go back to reference Luca-Carrasco, R., & Salvador-Carulla, L. (2012). Life satisfaction in persons with intellectual disabilities. Research in Development Disability, 33(4), 1103–1109.CrossRef Luca-Carrasco, R., & Salvador-Carulla, L. (2012). Life satisfaction in persons with intellectual disabilities. Research in Development Disability, 33(4), 1103–1109.CrossRef
38.
go back to reference 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 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
40.
go back to reference 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. 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.
go back to reference 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 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
43.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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
49.
go back to reference 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 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.
go back to reference 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 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.
go back to reference Haug, M. R., & Folmar, S. J. (2000). Longevity, gender, and life quality. Journal of Health and Social Behavior, 27(4), 332–345.CrossRef Haug, M. R., & Folmar, S. J. (2000). Longevity, gender, and life quality. Journal of Health and Social Behavior, 27(4), 332–345.CrossRef
52.
go back to reference Hao, L., & Johnson, R. W. (2000). Economic, cultural and social origins of emotional well-being. Research on Aging, 22(6), 599–629.CrossRef Hao, L., & Johnson, R. W. (2000). Economic, cultural and social origins of emotional well-being. Research on Aging, 22(6), 599–629.CrossRef
53.
go back to reference Steinhaug, S. (2007). Women’s strategies for handling chronic muscle pain. A quality study. Scandinavian Journal of Primary Health Care, 25, 44–48.CrossRef 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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
58.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference Targum, S. D., & Fava, M. (2011). Fatigue as a residual symptom of depression. Innovation in Clinical Neuroscience, 8(10), 40–43. Targum, S. D., & Fava, M. (2011). Fatigue as a residual symptom of depression. Innovation in Clinical Neuroscience, 8(10), 40–43.
68.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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. 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.
Metagegevens
Titel
Satisfaction with life in adults with Marfan syndrome (MFS): associations with health-related consequences of MFS, pain, fatigue, and demographic factors
Auteurs
Gry Velvin
Trine Bathen
Svend Rand-Hendriksen
Amy Østertun Geirdal
Publicatiedatum
01-07-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 7/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1214-1

Andere artikelen Uitgave 7/2016

Quality of Life Research 7/2016 Naar de uitgave