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Gepubliceerd in: Quality of Life Research 5/2008

01-06-2008

The use of focus groups in the development of the PROMIS pediatrics item bank

Auteurs: Tasanee R. Walsh, Debra E. Irwin, Andrea Meier, James W. Varni, Darren A. DeWalt

Gepubliceerd in: Quality of Life Research | Uitgave 5/2008

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Abstract

Purpose

To understand differences in perceptions of patient-reported outcome domains between children with asthma and children from the general population. We used this information in the development of patient-reported outcome items for the Patient-Reported Outcomes Measurement Information System Pediatrics project.

Methods

We conducted focus groups composed of ethnically, racially, and geographically diverse youth (8–12, 13–17 years) from the general population and youth with asthma. We performed content analysis to identify important themes.

Results

We identified five unique and different challenges that may confront youth with asthma as compared to general population youth: (1) They experience more difficulties when participating in physical activities; (2) They may experience anxiety about having an asthma attack at anytime and anywhere; (3) They may experience sleep disturbances and fatigue secondary to their asthma symptoms; (4) Their health condition has a greater effect on their emotional well-being and interpersonal relationships; and (5) Youth with asthma report that asthma often leaves them with insufficient energy to complete their school activities, especially physical activities.

Conclusions

The results confirm unique experiences for children with asthma across a broad range of health domains and enhance the breadth of all domains when creating an item bank.
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Literatuur
1.
go back to reference Reeve, B. (2006). Special issues for building computerized-adaptive tests for measuring patient-reported outcomes: The national institutes of health’s investment in new technology [item banking and computerized adaptive testing: Commentary]. Medical Care, 44(11) Suppl 3, S198–S204. Reeve, B. (2006). Special issues for building computerized-adaptive tests for measuring patient-reported outcomes: The national institutes of health’s investment in new technology [item banking and computerized adaptive testing: Commentary]. Medical Care, 44(11) Suppl 3, S198–S204.
2.
go back to reference Cella, D., Yount, S., Rothrock, N., et al. (2007). The patient-reported outcomes measurement information system (PROMIS): Progress of an NIH roadmap cooperative group during its first two years. Medical Care, 45(Suppl 1), S3–S11.PubMedCrossRef Cella, D., Yount, S., Rothrock, N., et al. (2007). The patient-reported outcomes measurement information system (PROMIS): Progress of an NIH roadmap cooperative group during its first two years. Medical Care, 45(Suppl 1), S3–S11.PubMedCrossRef
3.
go back to reference Chan, K. S., Mangione-Smith, R., Burwinkle, T. M., Rosen, M., & Varni, J. W. (2005). The PedsQL™: Reliability and validity of the short-form generic core scales and asthma module. Medical Care, 43, 256–265.PubMedCrossRef Chan, K. S., Mangione-Smith, R., Burwinkle, T. M., Rosen, M., & Varni, J. W. (2005). The PedsQL™: Reliability and validity of the short-form generic core scales and asthma module. Medical Care, 43, 256–265.PubMedCrossRef
4.
go back to reference Guyatt, G. H., Juniper, E. F., Griffith, L. E., Feeny, D. H., & Ferrie, P. J. (1997). Children and adult perceptions of childhood asthma. Pediatrics, 99(2), 165–168.PubMedCrossRef Guyatt, G. H., Juniper, E. F., Griffith, L. E., Feeny, D. H., & Ferrie, P. J. (1997). Children and adult perceptions of childhood asthma. Pediatrics, 99(2), 165–168.PubMedCrossRef
5.
go back to reference Juniper, E. F., Guyatt, G. H., Feeny, D. H., Ferrie, P. J., Griffith, L. E, & Townsend, M. (1996). Measuring quality of life in children with asthma. Quality of Life Research, 5(1), 35–46.PubMedCrossRef Juniper, E. F., Guyatt, G. H., Feeny, D. H., Ferrie, P. J., Griffith, L. E, & Townsend, M. (1996). Measuring quality of life in children with asthma. Quality of Life Research, 5(1), 35–46.PubMedCrossRef
6.
go back to reference Ader, D. N. (2007). Developing the patient-reported outcomes measurement information system (PROMIS). Medical Care, 45(Suppl 1), S1–S2.CrossRef Ader, D. N. (2007). Developing the patient-reported outcomes measurement information system (PROMIS). Medical Care, 45(Suppl 1), S1–S2.CrossRef
7.
go back to reference Landgraf, J. M., Abetz, L., & Ware, J. E. (1999). The CHQ: A user’s manual, 2nd printing. Boston, MA: HealthAct. Landgraf, J. M., Abetz, L., & Ware, J. E. (1999). The CHQ: A user’s manual, 2nd printing. Boston, MA: HealthAct.
8.
go back to reference Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., Auquier, P., Power, M., Abel, T., Czemy, L., Mazur, J., Czimbalmos, A., Tountas, Y., Hagquist, C., Kilroe, J., & the European KIDSCREEN Group. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research, 5(3), 353–364.CrossRef Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., Auquier, P., Power, M., Abel, T., Czemy, L., Mazur, J., Czimbalmos, A., Tountas, Y., Hagquist, C., Kilroe, J., & the European KIDSCREEN Group. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research, 5(3), 353–364.CrossRef
9.
go back to reference Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ version 4.0 generic core scales in healthy and patient populations. Medical Care, 39, 800–812.PubMedCrossRef Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ version 4.0 generic core scales in healthy and patient populations. Medical Care, 39, 800–812.PubMedCrossRef
10.
go back to reference Singh, G., Athreya, B. H., Fries, J. F., & Goldsmith, D. P. (1994). Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum, 37(12), 1761–1769.PubMedCrossRef Singh, G., Athreya, B. H., Fries, J. F., & Goldsmith, D. P. (1994). Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum, 37(12), 1761–1769.PubMedCrossRef
11.
go back to reference DeWalt, D. A., Rothrock, N., Yount, S., Stone, A. A., & the PROMIS Cooperative Group (2007). Evaluation of item candidates: The PROMIS qualitative item review. Medical Care, 45(5 Suppl 1), S12–S21.PubMedCrossRef DeWalt, D. A., Rothrock, N., Yount, S., Stone, A. A., & the PROMIS Cooperative Group (2007). Evaluation of item candidates: The PROMIS qualitative item review. Medical Care, 45(5 Suppl 1), S12–S21.PubMedCrossRef
12.
go back to reference Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL™: Measurement model for the Pediatric Quality of Life Inventory™. Medical Care, 37, 126–139.PubMedCrossRef Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL™: Measurement model for the Pediatric Quality of Life Inventory™. Medical Care, 37, 126–139.PubMedCrossRef
13.
go back to reference Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issue. Value in Health, 7, 79–92.PubMedCrossRef Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issue. Value in Health, 7, 79–92.PubMedCrossRef
14.
go back to reference Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research (3rd ed.). Thousand Oaks, CA: Sage. Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research (3rd ed.). Thousand Oaks, CA: Sage.
15.
go back to reference Ronen, G. M., Rosenbaum, P., Law, M., & Streiner, D. L. (2001). Health-related quality of life in childhood disorders: A modified focus group technique to involve children. Quality of Life Research, 10(1), 71–79.PubMedCrossRef Ronen, G. M., Rosenbaum, P., Law, M., & Streiner, D. L. (2001). Health-related quality of life in childhood disorders: A modified focus group technique to involve children. Quality of Life Research, 10(1), 71–79.PubMedCrossRef
16.
go back to reference Layder, D. (1998). Sociological practice: Linking theory and social research. London, UK: Sage. Layder, D. (1998). Sociological practice: Linking theory and social research. London, UK: Sage.
17.
go back to reference Weber, R. P. (1990). Basic content analysis. Beverly Hills, CA: Sage. Weber, R. P. (1990). Basic content analysis. Beverly Hills, CA: Sage.
18.
go back to reference Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Thousand Oaks, CA: Sage. Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Thousand Oaks, CA: Sage.
19.
go back to reference Morgan, D., Krueger, R., & King, J. A. (1998). The focus group guidebook (Vols. 1–6). Thousand Oaks, CA: Sage. Morgan, D., Krueger, R., & King, J. A. (1998). The focus group guidebook (Vols. 1–6). Thousand Oaks, CA: Sage.
20.
go back to reference Detmar, S. B., Bruil, J., Ravens-Sieberer, U., Gosch, A., Bisegger, C., & the European KIDSCREEN Group. (2006). The use of focus groups in the development of the KIDSCREEN HRQL questionnaire. Quality of Life Research, 15, 1345–1353.PubMedCrossRef Detmar, S. B., Bruil, J., Ravens-Sieberer, U., Gosch, A., Bisegger, C., & the European KIDSCREEN Group. (2006). The use of focus groups in the development of the KIDSCREEN HRQL questionnaire. Quality of Life Research, 15, 1345–1353.PubMedCrossRef
21.
go back to reference Heary, C. M., & Hennessy, E. (2002). The use of focus group interviews in pediatric health care research. Journal of Pediatric Psychology, 27, 47–57.PubMedCrossRef Heary, C. M., & Hennessy, E. (2002). The use of focus group interviews in pediatric health care research. Journal of Pediatric Psychology, 27, 47–57.PubMedCrossRef
22.
go back to reference Maier, W. C., Arrighi, H. M., Morray, B., Llewllyn, C., & Redding, G. J. (1998). The impact of asthma and asthma-like illness in Seattle school children. Journal of Clinical Epidemiology, 51(7), 557–568.PubMedCrossRef Maier, W. C., Arrighi, H. M., Morray, B., Llewllyn, C., & Redding, G. J. (1998). The impact of asthma and asthma-like illness in Seattle school children. Journal of Clinical Epidemiology, 51(7), 557–568.PubMedCrossRef
23.
go back to reference Rietveld S., & Colland, V. T. (1999). The impact of severe asthma on school children. Journal of Asthma, 36(5), 409–417.PubMedCrossRef Rietveld S., & Colland, V. T. (1999). The impact of severe asthma on school children. Journal of Asthma, 36(5), 409–417.PubMedCrossRef
24.
go back to reference Varni, J. W., Burwinkle, T. M., Rapoff, M. A., Kamps, J. L., & Olson, N. (2004). The PedsQL™ in pediatric asthma: Reliability and validity of the Pediatric Quality of Life Inventory™ generic core scales and asthma module. Journal of Behavioral Medicine, 27, 297–318.PubMedCrossRef Varni, J. W., Burwinkle, T. M., Rapoff, M. A., Kamps, J. L., & Olson, N. (2004). The PedsQL™ in pediatric asthma: Reliability and validity of the Pediatric Quality of Life Inventory™ generic core scales and asthma module. Journal of Behavioral Medicine, 27, 297–318.PubMedCrossRef
25.
go back to reference Meijer, S. A., Sinnema, G., Bijstra, J. O., Mellenbergh, G. J., & Wolters, W. H. G. (2000). Social functioning in children with chronic illness. The Journal of Child Psychology and Psychiatry and Allied Disciplines, 41, 309–317.CrossRef Meijer, S. A., Sinnema, G., Bijstra, J. O., Mellenbergh, G. J., & Wolters, W. H. G. (2000). Social functioning in children with chronic illness. The Journal of Child Psychology and Psychiatry and Allied Disciplines, 41, 309–317.CrossRef
26.
go back to reference Klinnert, M. D., McQuaid, E. L., McCormick, D., Adinoff, A. D., & Bryant, N. E. (2000). A multimethod assessment of behavioral and emotional adjustment in children with asthma. Journal of Pediatric Psychology, 25, 35–46.PubMedCrossRef Klinnert, M. D., McQuaid, E. L., McCormick, D., Adinoff, A. D., & Bryant, N. E. (2000). A multimethod assessment of behavioral and emotional adjustment in children with asthma. Journal of Pediatric Psychology, 25, 35–46.PubMedCrossRef
27.
go back to reference Wambolt, M. A., Yancey, A. G. J., & Roseler, T. A. (1997). Cardiovascular effects of tricyclic antidepressants in childhood asthma: A case series and review. Journal of Child Adolescent Psychopharmacolgy, 7, 45–64.CrossRef Wambolt, M. A., Yancey, A. G. J., & Roseler, T. A. (1997). Cardiovascular effects of tricyclic antidepressants in childhood asthma: A case series and review. Journal of Child Adolescent Psychopharmacolgy, 7, 45–64.CrossRef
28.
go back to reference Lahoux, P., Poland, B., & Daudelin, G. (2006). Focus group research and the “patient’s view. Social Science & Medicine, 63, 2091–2104.CrossRef Lahoux, P., Poland, B., & Daudelin, G. (2006). Focus group research and the “patient’s view. Social Science & Medicine, 63, 2091–2104.CrossRef
29.
go back to reference Bloom B., Cohen, R. A., Vickerie, J. L., & Wondimu, E. A. (2003). Summary health statistics for U.S. children: National health interview study, 2001. National Center for Health Statistics. Vital Health Stat, 10(216), 1–54. Bloom B., Cohen, R. A., Vickerie, J. L., & Wondimu, E. A. (2003). Summary health statistics for U.S. children: National health interview study, 2001. National Center for Health Statistics. Vital Health Stat, 10(216), 1–54.
Metagegevens
Titel
The use of focus groups in the development of the PROMIS pediatrics item bank
Auteurs
Tasanee R. Walsh
Debra E. Irwin
Andrea Meier
James W. Varni
Darren A. DeWalt
Publicatiedatum
01-06-2008
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 5/2008
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-008-9338-1

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