Skip to main content
main-content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Quality of Life Research 5/2017

03-11-2016

Can in-the-moment diary methods measure health-related quality of life in Duchenne muscular dystrophy?

Auteurs: Paula Bray, Anita C. Bundy, Monique M. Ryan, Kathryn N. North

Gepubliceerd in: Quality of Life Research | Uitgave 5/2017

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

Aim

To investigate whether in-the-moment diary reports of daily experience, taken collectively, are a valid representation of health-related quality of life (HRQL).

Methods

A total of 35 boys with Duchenne muscular dystrophy (DMD) were recruited through four neuromuscular care providers across Australia. Participants completed the PedsQL™ Generic Core scales and one week of experience-sampling diary reporting on a personal digital assistant. Rasch analysis was undertaken on the diary data to derive a single valid measure score. The resulting measure score for each participant was correlated with the summary score from the PedsQL™ Generic Core scales to examine whether daily experience was representative of HRQL.

Results

The daily diary method showed good metric properties, with adequate goodness of fit for data from items and participants suggesting unidimensionality of the construct: quality of everyday experience. The correlation of the daily diary measure score with overall PedsQL™ summary score showed moderate agreement (r = .60, p = 0.001).

Conclusions

The benefits of measuring daily quality of life include detailed descriptions of day-to-day experiences of children without the need for retrospective recall. Diary methods on an electronic platform or software application for personal devices may be a useful tool to understand HRQL as the repeated measures data provide a detailed experience directly from the child and the platform makes data completion highly motivating.
Literatuur
1.
go back to reference Uzark, K., King, E., Cripe, L., Spicer, R., Sage, J., Kinnett, K., et al. (2012). Health-related quality of life in children and adolescents with Duchenne muscular dystrophy. Pediatrics, 130, e1559–e1566. CrossRefPubMed Uzark, K., King, E., Cripe, L., Spicer, R., Sage, J., Kinnett, K., et al. (2012). Health-related quality of life in children and adolescents with Duchenne muscular dystrophy. Pediatrics, 130, e1559–e1566. CrossRefPubMed
2.
go back to reference Drotar, D. (1998). Measuring health-related quality of life in children and adolescents: Implications for research and practice. Mahwah, NJ: Lawrence Erlbaum Associates Inc. Drotar, D. (1998). Measuring health-related quality of life in children and adolescents: Implications for research and practice. Mahwah, NJ: Lawrence Erlbaum Associates Inc.
3.
go back to reference Eiser, C., & Morse, R. (2001). The measurement of quality of life in children: Past and future perspectives. Journal of Developmental and Behavioral Pediatrics, 22, 248–256. CrossRefPubMed Eiser, C., & Morse, R. (2001). The measurement of quality of life in children: Past and future perspectives. Journal of Developmental and Behavioral Pediatrics, 22, 248–256. CrossRefPubMed
4.
go back to reference Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Thyen, U., Arnaud, C., et al. (2007). Self-reported quality of life of 8–12-year-old children with cerebral palsy: A cross-sectional European study. The Lancet, 369, 2171–2178. CrossRef Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Thyen, U., Arnaud, C., et al. (2007). Self-reported quality of life of 8–12-year-old children with cerebral palsy: A cross-sectional European study. The Lancet, 369, 2171–2178. CrossRef
5.
go back to reference Juniper, E. F., Guyatt, G. H., Feeny, D. H., Griffith, L. E., & Ferrie, P. J. (1997). Minimum skills required by children to complete health-related quality of life instruments for asthma: Comparison of measurement properties. European Respiratory Journal, 10, 2285–2294. CrossRefPubMed Juniper, E. F., Guyatt, G. H., Feeny, D. H., Griffith, L. E., & Ferrie, P. J. (1997). Minimum skills required by children to complete health-related quality of life instruments for asthma: Comparison of measurement properties. European Respiratory Journal, 10, 2285–2294. CrossRefPubMed
6.
go back to reference Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research, 10, 347–357. CrossRefPubMed Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research, 10, 347–357. CrossRefPubMed
7.
go back to reference Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 6, 895–913. CrossRef Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 6, 895–913. CrossRef
8.
go back to reference Opstal, S. L. S. H. V., Jansen, M., van Alfen, N., & de Groot, I. J. M. (2014). Health-related quality of life and its relation to disease severity in boys with Duchenne muscular dystrophy: Satisfied boys, worrying parents—A case-control study. Journal of Child Neurology, 29, 1486–1495. CrossRef Opstal, S. L. S. H. V., Jansen, M., van Alfen, N., & de Groot, I. J. M. (2014). Health-related quality of life and its relation to disease severity in boys with Duchenne muscular dystrophy: Satisfied boys, worrying parents—A case-control study. Journal of Child Neurology, 29, 1486–1495. CrossRef
9.
go back to reference Gill, T. M., & Feinstein, A. R. (1994). A critical appraisal of the quality of quality-of-life measurements. JAMA, 272, 619–626. CrossRefPubMed Gill, T. M., & Feinstein, A. R. (1994). A critical appraisal of the quality of quality-of-life measurements. JAMA, 272, 619–626. CrossRefPubMed
10.
go back to reference Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5, 1–156. CrossRefPubMed Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5, 1–156. CrossRefPubMed
11.
go back to reference Stone, A. A., & Shiffman, S. (2002). Capturing momentary, self report data: A proposal for reporting guidelines. Annals of Behavioral Medicine, 24, 236–243. CrossRefPubMed Stone, A. A., & Shiffman, S. (2002). Capturing momentary, self report data: A proposal for reporting guidelines. Annals of Behavioral Medicine, 24, 236–243. CrossRefPubMed
12.
go back to reference Varni, J. W., Burwinkle, T. M., Sherman, S. A., Hanna, K., Berrin, S. J., Malcarne, V. L., et al. (2005). Health-related quality of life of children and adolescents with cerebral palsy: Hearing the voices of the children. Developmental Medicine and Child Neurology, 47, 592–597. CrossRefPubMed Varni, J. W., Burwinkle, T. M., Sherman, S. A., Hanna, K., Berrin, S. J., Malcarne, V. L., et al. (2005). Health-related quality of life of children and adolescents with cerebral palsy: Hearing the voices of the children. Developmental Medicine and Child Neurology, 47, 592–597. CrossRefPubMed
13.
go back to reference Rosenbaum, P. (2008). Children’s quality of life: Separating the person from the disorder. Archives of Disease in Childhood, 93, 100–101. CrossRefPubMed Rosenbaum, P. (2008). Children’s quality of life: Separating the person from the disorder. Archives of Disease in Childhood, 93, 100–101. CrossRefPubMed
15.
go back to reference Spieth, L. E., & Harris, C. V. (1996). Assessment of health-related quality of life in children and adolescents: An integrative review. Journal of Pediatric Psychology, 21, 175–193. CrossRefPubMed Spieth, L. E., & Harris, C. V. (1996). Assessment of health-related quality of life in children and adolescents: An integrative review. Journal of Pediatric Psychology, 21, 175–193. CrossRefPubMed
16.
go back to reference Stone, A. A., & Shiffman, S. (1994). Ecological momentary assessment: Measuring real world processes in behavioural medicine. Annuals of Behavioural Medicine, 16, 199–202. Stone, A. A., & Shiffman, S. (1994). Ecological momentary assessment: Measuring real world processes in behavioural medicine. Annuals of Behavioural Medicine, 16, 199–202.
17.
go back to reference Rajmil, L., Herdman, M., De Sanmamed, M. F., Detmar, S., Bruil, J., Ravens-Sieberer, U., et al. (2004). Generic health-related quality of life instruments in children and adolescents: A qualitative analysis of content. Journal of Adolescent Health, 34, 37–45. CrossRefPubMed Rajmil, L., Herdman, M., De Sanmamed, M. F., Detmar, S., Bruil, J., Ravens-Sieberer, U., et al. (2004). Generic health-related quality of life instruments in children and adolescents: A qualitative analysis of content. Journal of Adolescent Health, 34, 37–45. CrossRefPubMed
18.
go back to reference Palermo, T. M., Valenzuela, D., & Stork, P. P. (2004). A randomized trial of electronic versus paper pain diaries in children: Impact on compliance, accuracy and acceptability. Pain, 107, 213–219. CrossRefPubMed Palermo, T. M., Valenzuela, D., & Stork, P. P. (2004). A randomized trial of electronic versus paper pain diaries in children: Impact on compliance, accuracy and acceptability. Pain, 107, 213–219. CrossRefPubMed
19.
go back to reference Maes, I. H. L., Delespaul, P. A. E. G., Peters, M. L., White, M. P., van Horn, Y., Schruers, K., et al. (2015). Measuring health-related quality of life by experiences: The experience sampling method. Value in Health, 18, 44–51. CrossRefPubMed Maes, I. H. L., Delespaul, P. A. E. G., Peters, M. L., White, M. P., van Horn, Y., Schruers, K., et al. (2015). Measuring health-related quality of life by experiences: The experience sampling method. Value in Health, 18, 44–51. CrossRefPubMed
20.
go back to reference Hektner, J. M., Schmidt, J. A., & Csikszentmihalyi, M. (2007). Experience sampling method: Measuring the quality of everyday life. California: SAGE. CrossRef Hektner, J. M., Schmidt, J. A., & Csikszentmihalyi, M. (2007). Experience sampling method: Measuring the quality of everyday life. California: SAGE. CrossRef
21.
go back to reference Csikszentmihalyi, M., & Schneider, B. (2001). Conditions for optimal development in adolescence: An experiential approach. Applied Developmental Science, 5(3), 122–124. CrossRef Csikszentmihalyi, M., & Schneider, B. (2001). Conditions for optimal development in adolescence: An experiential approach. Applied Developmental Science, 5(3), 122–124. CrossRef
22.
go back to reference Csikszentmihalyi, M., & Larson, R. (1984). Being adolescent: Conflict and growth in the teenage years. New York: Basic Books Inc. Csikszentmihalyi, M., & Larson, R. (1984). Being adolescent: Conflict and growth in the teenage years. New York: Basic Books Inc.
23.
go back to reference Barge-Schaapveld, D., Nicolson, N., Delespaul, P., & deVries, M. W. (2006). Assessing daily quality of life with the experience sampling method. In H. Katschnig, H. Freeman, & N. Sartorius (Eds.), Quality of life in mental disorders. Wiley: West Sussex. Barge-Schaapveld, D., Nicolson, N., Delespaul, P., & deVries, M. W. (2006). Assessing daily quality of life with the experience sampling method. In H. Katschnig, H. Freeman, & N. Sartorius (Eds.), Quality of life in mental disorders. Wiley: West Sussex.
24.
go back to reference Bolger, N., Davis, A., & Rafaeli, E. (2003). Diary methods: Capturing life as it is lived. Annual Review of Psychology, 54, 579–616. CrossRefPubMed Bolger, N., Davis, A., & Rafaeli, E. (2003). Diary methods: Capturing life as it is lived. Annual Review of Psychology, 54, 579–616. CrossRefPubMed
25.
go back to reference Henker, B., Whalen, C. K., Jamner, L. D., & Delfino, R. J. (2002). Anxiety, affect, and activity in teenagers: Monitoring daily life with electronic diaries. Journal of the American Academy of Child and Adolescent Psychiatry, 41, 660–670. CrossRefPubMed Henker, B., Whalen, C. K., Jamner, L. D., & Delfino, R. J. (2002). Anxiety, affect, and activity in teenagers: Monitoring daily life with electronic diaries. Journal of the American Academy of Child and Adolescent Psychiatry, 41, 660–670. CrossRefPubMed
26.
go back to reference Rah, M., Walline, J. J., Mitchell, G. L., & Zadnik, K. (2006). Comparison of the experience sampling method and questionnaires to asses visual activities in pre-teen and adolescent children. Ophthalmic and Physiological Optics, 26, 483–489. CrossRefPubMed Rah, M., Walline, J. J., Mitchell, G. L., & Zadnik, K. (2006). Comparison of the experience sampling method and questionnaires to asses visual activities in pre-teen and adolescent children. Ophthalmic and Physiological Optics, 26, 483–489. CrossRefPubMed
27.
go back to reference Csikszentmihalyi, M., & Larson, R. W. (1987). Validity and reliability of the experience sampling method. Journal of Nervous and Mental Disorders, 175, 526–536. CrossRef Csikszentmihalyi, M., & Larson, R. W. (1987). Validity and reliability of the experience sampling method. Journal of Nervous and Mental Disorders, 175, 526–536. CrossRef
28.
go back to reference Moneta, G., Schneider, B., & Csikszentmihalyi, M. (2001). A longitudinal study of self-concept and experiential components of self-worth and affect across adolescence. Applied Developmental Science, 5, 125–142. CrossRef Moneta, G., Schneider, B., & Csikszentmihalyi, M. (2001). A longitudinal study of self-concept and experiential components of self-worth and affect across adolescence. Applied Developmental Science, 5, 125–142. CrossRef
29.
go back to reference Rah, M., Mitchell, G., & Zadnik, K. (2004). Use of the experience sampling method to measure nearwork. Optometry and Vision Science, 81, 82–87. CrossRefPubMed Rah, M., Mitchell, G., & Zadnik, K. (2004). Use of the experience sampling method to measure nearwork. Optometry and Vision Science, 81, 82–87. CrossRefPubMed
30.
go back to reference Bray, P., Bundy, A. B., Ryan, M. M., & North, K. N. (2010). Feasibility of a computerized method to measure quality of ‘everyday’ life in children with neuromuscular disorders. Physical and Occupational Therapy in Pediatrics, 30, 43–53. CrossRefPubMed Bray, P., Bundy, A. B., Ryan, M. M., & North, K. N. (2010). Feasibility of a computerized method to measure quality of ‘everyday’ life in children with neuromuscular disorders. Physical and Occupational Therapy in Pediatrics, 30, 43–53. CrossRefPubMed
31.
go back to reference Christensen, T. C., Barrett, L. F., Bliss-Moreau, E., Lebo, K., & Kaschub, C. (2003). A practical guide to experience-sampling procedures. Journal of Happiness Studies, 4, 53–78. CrossRef Christensen, T. C., Barrett, L. F., Bliss-Moreau, E., Lebo, K., & Kaschub, C. (2003). A practical guide to experience-sampling procedures. Journal of Happiness Studies, 4, 53–78. CrossRef
32.
go back to reference Bishop, M. (2005). Quality of life and psychosocial adaptation to chronic illness and acquired disability: A conceptual and theoretical synthesiss. Journal of Rehabilitation, 71, 5–13. Bishop, M. (2005). Quality of life and psychosocial adaptation to chronic illness and acquired disability: A conceptual and theoretical synthesiss. Journal of Rehabilitation, 71, 5–13.
33.
go back to reference Csikszentmihalyi, M., & Csikszentmihalyi, I. S. (1988). Optimal experience: Psychological studies of flow in consciousness. New York: Cambridge University Press. CrossRef Csikszentmihalyi, M., & Csikszentmihalyi, I. S. (1988). Optimal experience: Psychological studies of flow in consciousness. New York: Cambridge University Press. CrossRef
34.
go back to reference Dale, O., & Hagen, K. B. (2007). Despite technical problems personal digital assistants outperform pen and paper when collecting patient diary data. Journal of Clinical Epidemiology, 60, 8–17. CrossRefPubMed Dale, O., & Hagen, K. B. (2007). Despite technical problems personal digital assistants outperform pen and paper when collecting patient diary data. Journal of Clinical Epidemiology, 60, 8–17. CrossRefPubMed
35.
go back to reference Roelofs, J., Peters, M. L., Patijn, J., Schouten, E. G. W., & Vlaeyen, J. W. S. (2006). An electronic diary assessment of the effects of distraction and attentional focusing on pain intensity in chronic low back pain patients. British Journal of Health Psychology, 11, 595–606. CrossRefPubMed Roelofs, J., Peters, M. L., Patijn, J., Schouten, E. G. W., & Vlaeyen, J. W. S. (2006). An electronic diary assessment of the effects of distraction and attentional focusing on pain intensity in chronic low back pain patients. British Journal of Health Psychology, 11, 595–606. CrossRefPubMed
36.
go back to reference Matthew, A. G., Currie, K. L., Ritvo, P., Nam, R., Nesbitt, M. E., Kalnin, R. W., et al. (2007). Personal digital assistant capture: The future of quality of life measurement in prostate cancer treatment. Journal of Oncology Practice, 3, 115–120. CrossRefPubMedPubMedCentral Matthew, A. G., Currie, K. L., Ritvo, P., Nam, R., Nesbitt, M. E., Kalnin, R. W., et al. (2007). Personal digital assistant capture: The future of quality of life measurement in prostate cancer treatment. Journal of Oncology Practice, 3, 115–120. CrossRefPubMedPubMedCentral
37.
go back to reference Kimhy, D., Delespaul, P., Corcoran, C., Ahn, H., Yale, S., & Malaspina, D. (2006). Computerized experience sampling method (ESMc): Assessing feasibility and validity among individuals with schizophrenia. Journal of Psychiatric Research, 40, 221–230. CrossRefPubMed Kimhy, D., Delespaul, P., Corcoran, C., Ahn, H., Yale, S., & Malaspina, D. (2006). Computerized experience sampling method (ESMc): Assessing feasibility and validity among individuals with schizophrenia. Journal of Psychiatric Research, 40, 221–230. CrossRefPubMed
38.
go back to reference Barge-Schaapveld, D., & Nicolson, N. A. (2002). Effects of antidepressant treatment on the quality of daily life: An experience sampling study. Journal of Clinical Psychiatry, 63, 477–485. CrossRefPubMed Barge-Schaapveld, D., & Nicolson, N. A. (2002). Effects of antidepressant treatment on the quality of daily life: An experience sampling study. Journal of Clinical Psychiatry, 63, 477–485. CrossRefPubMed
39.
go back to reference McDonald, C. M. M., Abresch, R. T. M., Carter, G. T. M., Fowler, W. M. J., Johnson, E. R. M. D., Kilmer, D. D. M., et al. (1995). Profiles of neuromuscular diseases: Duchenne muscular dystrophy. American Journal of Physical Medicine and Rehabilitation, 74, S93. CrossRefPubMed McDonald, C. M. M., Abresch, R. T. M., Carter, G. T. M., Fowler, W. M. J., Johnson, E. R. M. D., Kilmer, D. D. M., et al. (1995). Profiles of neuromuscular diseases: Duchenne muscular dystrophy. American Journal of Physical Medicine and Rehabilitation, 74, S93. CrossRefPubMed
40.
go back to reference Bray, P., Bundy, A. B., Ryan, M. M., North, K. N., & Everett, A. (2010). Health related quality of life in boys with Duchenne muscular dystrophy: Agreement between parents and their sons. Journal of Child Neurology, 25, 1188–1194. CrossRefPubMed Bray, P., Bundy, A. B., Ryan, M. M., North, K. N., & Everett, A. (2010). Health related quality of life in boys with Duchenne muscular dystrophy: Agreement between parents and their sons. Journal of Child Neurology, 25, 1188–1194. CrossRefPubMed
41.
go back to reference Hendriksen, J. G. M., & Vles, J. S. H. (2008). Neuropsychiatric disorders in males with Duchenne muscular dystrophy: Frequency rate of attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder, and obsessive-compulsive disorder. Journal of Child Neurology, 23, 477–481. CrossRefPubMed Hendriksen, J. G. M., & Vles, J. S. H. (2008). Neuropsychiatric disorders in males with Duchenne muscular dystrophy: Frequency rate of attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder, and obsessive-compulsive disorder. Journal of Child Neurology, 23, 477–481. CrossRefPubMed
42.
go back to reference Woodcock, R. W., McGrew, K. S., & Meather, N. (2001). Woodcock–Johnson III tests of achievement. ITASCA, IL: Riverside Publishing. Woodcock, R. W., McGrew, K. S., & Meather, N. (2001). Woodcock–Johnson III tests of achievement. ITASCA, IL: Riverside Publishing.
43.
go back to reference Vignos, P. J., Wagner, M. B., Karlinchak, B., & Katirji, B. (1996). Evaluation of a program for long-term treatment of Duchenne muscular dystrophy. Experience at the University Hospitals of Cleveland. The Journal of Bone and Joint Surgery, 78(12), 1844–1852. CrossRefPubMed Vignos, P. J., Wagner, M. B., Karlinchak, B., & Katirji, B. (1996). Evaluation of a program for long-term treatment of Duchenne muscular dystrophy. Experience at the University Hospitals of Cleveland. The Journal of Bone and Joint Surgery, 78(12), 1844–1852. CrossRefPubMed
44.
go back to reference Brooke, M. H., Griggs, R. C., Mendell, J. R., Fenichel, G. M., Shumate, J. B., & Pellegrino, R. J. (1981). Clinical trial in Duchenne dystrophy. I. The design of the protocol. Muscle and Nerve, 4, 186–197. CrossRefPubMed Brooke, M. H., Griggs, R. C., Mendell, J. R., Fenichel, G. M., Shumate, J. B., & Pellegrino, R. J. (1981). Clinical trial in Duchenne dystrophy. I. The design of the protocol. Muscle and Nerve, 4, 186–197. CrossRefPubMed
45.
go back to reference Maier, K. S. (2002). Modeling incomplete scaled questionnaire data with a partial credit hierarchical measurement model. Journal of Educational and Behavioral Statistics, 27, 271–289. CrossRef Maier, K. S. (2002). Modeling incomplete scaled questionnaire data with a partial credit hierarchical measurement model. Journal of Educational and Behavioral Statistics, 27, 271–289. CrossRef
46.
go back to reference Varni, J., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for pediatric quality of life inventory. Medical Care, 37, 126–139. CrossRefPubMed Varni, J., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for pediatric quality of life inventory. Medical Care, 37, 126–139. CrossRefPubMed
47.
go back to reference Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL™ 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3, 329–341. CrossRefPubMed Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL™ 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3, 329–341. CrossRefPubMed
48.
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. CrossRefPubMed 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. CrossRefPubMed
49.
go back to reference Varni, J. W., Burwinkle, T. M., & Seid, M. (2006). The PedsQL 4.0 as a school population health measure: Feasibility, reliability, and validity. Quality of Life Research, 15, 203–215. CrossRefPubMed Varni, J. W., Burwinkle, T. M., & Seid, M. (2006). The PedsQL 4.0 as a school population health measure: Feasibility, reliability, and validity. Quality of Life Research, 15, 203–215. CrossRefPubMed
50.
go back to reference Barrett, L. F., & Barrett, D. J. (2005). ESP, the experience sampling program (Version 4). Boston: GNU Public License. Barrett, L. F., & Barrett, D. J. (2005). ESP, the experience sampling program (Version 4). Boston: GNU Public License.
51.
go back to reference Grootenhuis, M. A., de Boone, J., & van der Kooi, A. (2007). Living with muscular dystrophy: Health related quality of life consequences for children and adults. Health and Quality of Life Outcomes, 5, 31–39. CrossRefPubMedPubMedCentral Grootenhuis, M. A., de Boone, J., & van der Kooi, A. (2007). Living with muscular dystrophy: Health related quality of life consequences for children and adults. Health and Quality of Life Outcomes, 5, 31–39. CrossRefPubMedPubMedCentral
52.
go back to reference Hedeker, D., Mermelstein, R. J., & Flay, B. R. (2006). Application of item response theory models for intensive longitudinal data. In T. A. Walls & J. L. Schafer (Eds.), Models for intensive longitudinal data. New York: Oxford University Press Inc. Hedeker, D., Mermelstein, R. J., & Flay, B. R. (2006). Application of item response theory models for intensive longitudinal data. In T. A. Walls & J. L. Schafer (Eds.), Models for intensive longitudinal data. New York: Oxford University Press Inc.
53.
go back to reference Edelen, M. O., & Reeve, B. B. (2007). Applying item response theory (IRT) modeling to questionnaire development, evaluation, and refinement. Quality of Life Research, 16, 5–18. CrossRefPubMed Edelen, M. O., & Reeve, B. B. (2007). Applying item response theory (IRT) modeling to questionnaire development, evaluation, and refinement. Quality of Life Research, 16, 5–18. CrossRefPubMed
54.
go back to reference Baghaei, P. (2008). The Rasch model as a construct validation tool. Rasch Measurement Transactions, 12, 1145–1146. Baghaei, P. (2008). The Rasch model as a construct validation tool. Rasch Measurement Transactions, 12, 1145–1146.
55.
go back to reference Bond, T. G., & Fox, C. M. (2007). Applying the Rasch model: Fundamental measurement in the human sciences (2nd ed.). Mahwah, New York: Lawrence Earlbaum. Bond, T. G., & Fox, C. M. (2007). Applying the Rasch model: Fundamental measurement in the human sciences (2nd ed.). Mahwah, New York: Lawrence Earlbaum.
56.
go back to reference Scanlan, J. N., & Bundy, A. C. (2011). Development and validation of the modified occupational questionnaire. American Journal of Occupational Therapy, 65, e11–e19. CrossRef Scanlan, J. N., & Bundy, A. C. (2011). Development and validation of the modified occupational questionnaire. American Journal of Occupational Therapy, 65, e11–e19. CrossRef
57.
go back to reference Linacre, J. M. (1999). Catergory disordering versus step (threshold) disordering. Rasch Measurement Transactions, 3, 103–122. Linacre, J. M. (1999). Catergory disordering versus step (threshold) disordering. Rasch Measurement Transactions, 3, 103–122.
58.
go back to reference Hektner, J. M., & Csikszentmihalyi, M. (1996). A longitudinal exploration of flow and intrinsic motivation in adolescents. In Annual meeting of the American Educational Research Association. New York: EDRS. Hektner, J. M., & Csikszentmihalyi, M. (1996). A longitudinal exploration of flow and intrinsic motivation in adolescents. In Annual meeting of the American Educational Research Association. New York: EDRS.
59.
go back to reference Warren, C. G. (1990). Powered mobility and its implications. Journal of Rehabilitation and Development, 2, 74–85. Warren, C. G. (1990). Powered mobility and its implications. Journal of Rehabilitation and Development, 2, 74–85.
60.
go back to reference Wright, B., & Stone, M. (1999). Measurement essentials (2nd ed.). Wilmington, Delaware: Wide Range Inc. Wright, B., & Stone, M. (1999). Measurement essentials (2nd ed.). Wilmington, Delaware: Wide Range Inc.
62.
go back to reference Portney, L. G., & Watkins, M. P. (2000). Foundations of clinical research: Applications to practice (2nd ed.). New Jersey: Prentice-Hall Inc. Portney, L. G., & Watkins, M. P. (2000). Foundations of clinical research: Applications to practice (2nd ed.). New Jersey: Prentice-Hall Inc.
63.
go back to reference Zimmerman, D. W. (1994). A note on the influence of outliers on parametric and nonparametric tests. Journal of General Psychology, 121, 391–401. CrossRef Zimmerman, D. W. (1994). A note on the influence of outliers on parametric and nonparametric tests. Journal of General Psychology, 121, 391–401. CrossRef
Metagegevens
Titel
Can in-the-moment diary methods measure health-related quality of life in Duchenne muscular dystrophy?
Auteurs
Paula Bray
Anita C. Bundy
Monique M. Ryan
Kathryn N. North
Publicatiedatum
03-11-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2017
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1442-z