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Gepubliceerd in: Quality of Life Research 5/2020

06-01-2020

Hereditary hemorrhagic telangiectasia and health-related quality of life: a qualitative investigation

Auteurs: Guillaume Martinent, Manon Carrot, Anne Chirac, Sophie Dupuis-Girod, Anne-Emmanuelle Fargeton, Stéphanie Blois Da Conceição, Sylvie Fourdrinoy

Gepubliceerd in: Quality of Life Research | Uitgave 5/2020

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Abstract

Objective

The purpose of the study was to arrive at an accurate description of health-related quality of life of hereditary hemorrhagic telangiectasia patients.

Methods

Thirteen semi-structured interviews were conducted in patients with hereditary hemorrhagic telangiectasia.

Results

Qualitative grounded theory analyses were performed using the participants’ transcripts and revealed the following six categories: Impact of physical symptoms on daily life, Quality of family and social life, Emotional and psychological outcomes related to the disease, Knowledge having a severe disease and coping strategies to manage such disease, Recognition of the disease by professional colleagues and superiors, and Knowledge and understanding from health professionals in medical care.

Conclusion

The definition of quality of life that emerged from the participants’ transcripts was essentially related to health. Individuals with hereditary hemorrhagic telangiectasia mainly focused on the physical, psychological and emotional impacts of the symptoms and their consequences on professional life and social activities. Family relationships were also highlighted in the participants’ transcripts. As such, HHT patients used coping strategies to manage their disease. Finally, a particularly salient issue referred to the lack of knowledge concerning the rare nature of this disease and the ensuing inherent sense of misunderstanding.

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Literatuur
1.
go back to reference Plauchu, H., Brunet, G., Bideau, A., & Robert, J. M. (1992). La maladie de Rendu-Osler. Le Concours Médical, 114, 2469–2476. Plauchu, H., Brunet, G., Bideau, A., & Robert, J. M. (1992). La maladie de Rendu-Osler. Le Concours Médical, 114, 2469–2476.
3.
go back to reference Haute Autorité de Santé. (2009). Maladie de Rendu-Osler Protocole national de diagnostic et de soins. Saint-Denis La Plaine: Edition HAS. Haute Autorité de Santé. (2009). Maladie de Rendu-Osler Protocole national de diagnostic et de soins. Saint-Denis La Plaine: Edition HAS.
4.
go back to reference Cohen, J. S., & Biesecker, B. B. (2010). Quality of life in rare genetic conditions: A systematic review of the literature. American Journal of Medical Genetics. Part A, 152A, 1136–1156. CrossRef Cohen, J. S., & Biesecker, B. B. (2010). Quality of life in rare genetic conditions: A systematic review of the literature. American Journal of Medical Genetics. Part A, 152A, 1136–1156. CrossRef
5.
go back to reference Wade, J. E., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). Medical Care, 30, 473–483. CrossRef Wade, J. E., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). Medical Care, 30, 473–483. CrossRef
6.
go back to reference EuroQol Group. (1990). EuroQol—A new facility for the measurement of health-related quality of life. Health Policy, 16, 199–208. CrossRef EuroQol Group. (1990). EuroQol—A new facility for the measurement of health-related quality of life. Health Policy, 16, 199–208. CrossRef
7.
go back to reference Geisthoff, U. W., Heckmann, K., D’Amelio, R., Grünewald, S., Knöbber, D., Falkai, P., et al. (2007). Health-related quality of life in hereditary hemorrhagic telangiectasia. Otolaryngology Head Neck Surgery, 136, 726–733. CrossRef Geisthoff, U. W., Heckmann, K., D’Amelio, R., Grünewald, S., Knöbber, D., Falkai, P., et al. (2007). Health-related quality of life in hereditary hemorrhagic telangiectasia. Otolaryngology Head Neck Surgery, 136, 726–733. CrossRef
8.
go back to reference Pasculli, G., Resta, F., Guastamacchia, E., Di Gennaro, L., Suppressa, P., & Sabbà, C. (2004). Health-related quality of life in a rare disease: Hereditary hemorrhagic telangiectasia (HHT) or Rendu-Osler-Weber disease. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 13, 1715–1723. CrossRef Pasculli, G., Resta, F., Guastamacchia, E., Di Gennaro, L., Suppressa, P., & Sabbà, C. (2004). Health-related quality of life in a rare disease: Hereditary hemorrhagic telangiectasia (HHT) or Rendu-Osler-Weber disease. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 13, 1715–1723. CrossRef
9.
go back to reference Zarrabeitia, R., Farinas-Alvarez, C., Santibanez, M., Senaris, B., Fontalba, A., Botella, L. M., et al. (2017). Quality of life with hereditary haemorrhagic telangiectasia (HHT). Health and Quality of Life Outcomes, 15, 19. CrossRef Zarrabeitia, R., Farinas-Alvarez, C., Santibanez, M., Senaris, B., Fontalba, A., Botella, L. M., et al. (2017). Quality of life with hereditary haemorrhagic telangiectasia (HHT). Health and Quality of Life Outcomes, 15, 19. CrossRef
10.
go back to reference Caputo, A. (2014). Exploring quality of life in Italian patients with rare disease: A computer-aided content analysis of illness stories. Psychology, Health & Medicine, 19, 211–221. CrossRef Caputo, A. (2014). Exploring quality of life in Italian patients with rare disease: A computer-aided content analysis of illness stories. Psychology, Health & Medicine, 19, 211–221. CrossRef
11.
go back to reference Leplège, A., & Coste, J. (2002). Mesure de la santé perceptuelle et de la qualité de vie: méthodes et applications. Bruxelles: Editions Estem. Leplège, A., & Coste, J. (2002). Mesure de la santé perceptuelle et de la qualité de vie: méthodes et applications. Bruxelles: Editions Estem.
12.
go back to reference Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Newbury Park, CA: Sage. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Newbury Park, CA: Sage.
13.
go back to reference Giorgi, A. (1970). Psychology as a human science. New York: Harper & Row. Giorgi, A. (1970). Psychology as a human science. New York: Harper & Row.
14.
go back to reference Merleau-Ponty, M. (1962). The phenomenology of perception. London: Routledge and Kegan Paul. Merleau-Ponty, M. (1962). The phenomenology of perception. London: Routledge and Kegan Paul.
15.
go back to reference Polkinghorne, D. (1989). Phenomenological research methods. In K. Ronald & S. Halling (Eds.), Existential phenomenological perspectives in psychology: Exploring the breadth of human experience (pp. 41–60). New York: Plenum Press. CrossRef Polkinghorne, D. (1989). Phenomenological research methods. In K. Ronald & S. Halling (Eds.), Existential phenomenological perspectives in psychology: Exploring the breadth of human experience (pp. 41–60). New York: Plenum Press. CrossRef
16.
go back to reference Patton, M. Q. (1990). Qualitative evaluation and research methods. Newbury Park, CA: Sage. Patton, M. Q. (1990). Qualitative evaluation and research methods. Newbury Park, CA: Sage.
17.
go back to reference Martinent, G., & Ferrand, C. (2015). A field study of discrete emotions: Athletes’ cognitive appraisals during competition. Research Quarterly for Exercise and Sport, 86, 51–62. CrossRef Martinent, G., & Ferrand, C. (2015). A field study of discrete emotions: Athletes’ cognitive appraisals during competition. Research Quarterly for Exercise and Sport, 86, 51–62. CrossRef
18.
go back to reference Martinent, G., Ledos, S., Ferrand, C., Campo, M., & Nicolas, M. (2015). Athletes’ regulation of emotions experienced during competition: A naturalistic video-assisted study. Sport, Exercise, and Performance Psychology, 4, 188–205. CrossRef Martinent, G., Ledos, S., Ferrand, C., Campo, M., & Nicolas, M. (2015). Athletes’ regulation of emotions experienced during competition: A naturalistic video-assisted study. Sport, Exercise, and Performance Psychology, 4, 188–205. CrossRef
19.
go back to reference Charmaz, K. (2000). Grounded theory: Objectivist and constructivist methods. In D. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative methods (2nd ed., pp. 509–535). Thousand Oaks, CA: Sage. Charmaz, K. (2000). Grounded theory: Objectivist and constructivist methods. In D. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative methods (2nd ed., pp. 509–535). Thousand Oaks, CA: Sage.
20.
go back to reference Patrick, D. L., & Erickson, P. (1993). Health status and health policy: Quality of life in health care evaluation and resource allocation. New York: Oxford University Press. Patrick, D. L., & Erickson, P. (1993). Health status and health policy: Quality of life in health care evaluation and resource allocation. New York: Oxford University Press.
21.
go back to reference Al-Deen, S., & Bachmann-Harildstad, G. (2008). A grading scale for epistaxis in hereditary haemorrhagic teleangectasia. Rhinology, 46, 281–284. PubMed Al-Deen, S., & Bachmann-Harildstad, G. (2008). A grading scale for epistaxis in hereditary haemorrhagic teleangectasia. Rhinology, 46, 281–284. PubMed
22.
go back to reference Holderried, M., Baur, M., & Pfister, M. (2010). Impact of hereditary hemorrhagic teleangiectasia on quality of life. The Open Otorhinolaryngology Journal, 4, 55–61. CrossRef Holderried, M., Baur, M., & Pfister, M. (2010). Impact of hereditary hemorrhagic teleangiectasia on quality of life. The Open Otorhinolaryngology Journal, 4, 55–61. CrossRef
23.
go back to reference Chaumet, H. (2010). Maladie génétique et souffrance psychique. Le Journal des Psychologues, 243, 51–54. CrossRef Chaumet, H. (2010). Maladie génétique et souffrance psychique. Le Journal des Psychologues, 243, 51–54. CrossRef
24.
go back to reference Geirdal, A. Ø., Dheyauldeen, S., Bachmann-Harildstad, G., & Heimdal, K. (2013). Living with hereditary haemorrhagic telangiectasia: Coping and psychological distress—A cross-sectional study. Disability and Rehabilitation, 35(3), 206–213. CrossRef Geirdal, A. Ø., Dheyauldeen, S., Bachmann-Harildstad, G., & Heimdal, K. (2013). Living with hereditary haemorrhagic telangiectasia: Coping and psychological distress—A cross-sectional study. Disability and Rehabilitation, 35(3), 206–213. CrossRef
25.
26.
go back to reference Caputo, A. (2017). The contribution of psychology to research on congenital anomalies: Computer-aided thematic analysis of international scientific literature. In W. Ramirez (Ed.), Rare diseases: Prevalence, treatment options and research insights. New York: Nova Science Publishers. Caputo, A. (2017). The contribution of psychology to research on congenital anomalies: Computer-aided thematic analysis of international scientific literature. In W. Ramirez (Ed.), Rare diseases: Prevalence, treatment options and research insights. New York: Nova Science Publishers.
27.
go back to reference Coopman, A.-L., & Janssen, C. (2006). La maladie génétique au cœur de la fratrie : « tabou » et « secret ». Cahiers de Psychologie Clinique, 27(2), 39–54. CrossRef Coopman, A.-L., & Janssen, C. (2006). La maladie génétique au cœur de la fratrie : « tabou » et « secret ». Cahiers de Psychologie Clinique, 27(2), 39–54. CrossRef
28.
go back to reference Serrano, J. A. (1983). Secret partagé: secret formulable en thérapie familiale. Thérapie Familiale, 4, 347–358. Serrano, J. A. (1983). Secret partagé: secret formulable en thérapie familiale. Thérapie Familiale, 4, 347–358.
29.
go back to reference Caputo, A. (2013). Health demand in primary care context: What do people think about physicians? Psychology, Health & Medicine, 18, 145–154. CrossRef Caputo, A. (2013). Health demand in primary care context: What do people think about physicians? Psychology, Health & Medicine, 18, 145–154. CrossRef
30.
go back to reference Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.
33.
go back to reference Malle, B. F. (1999). How people explain behavior: A new theoretical framework. Personality and Social Psychology Review, 3, 23–48. CrossRef Malle, B. F. (1999). How people explain behavior: A new theoretical framework. Personality and Social Psychology Review, 3, 23–48. CrossRef
Metagegevens
Titel
Hereditary hemorrhagic telangiectasia and health-related quality of life: a qualitative investigation
Auteurs
Guillaume Martinent
Manon Carrot
Anne Chirac
Sophie Dupuis-Girod
Anne-Emmanuelle Fargeton
Stéphanie Blois Da Conceição
Sylvie Fourdrinoy
Publicatiedatum
06-01-2020
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2020
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02415-7