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Quality of Life Research
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

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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.
vorige artikel Evaluating and establishing national norms for mental wellbeing using the short Warwick–Edinburgh Mental Well-being Scale (SWEMWBS): findings from the Health Survey for England
volgende artikel Development of the forensic inpatient quality of life questionnaire: short version (FQL-SV)
Literatuur
1.
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.
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.
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.
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.
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.
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.
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.
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.
Gill, T. M., & Feinstein, A. R. (1994). A critical appraisal of the quality of quality-of-life measurements. JAMA, 272, 619–626.CrossRefPubMed
10.
Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5, 1–156.CrossRefPubMed
11.
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.
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.
Rosenbaum, P. (2008). Children’s quality of life: Separating the person from the disorder. Archives of Disease in Childhood, 93, 100–101.CrossRefPubMed
14.
15.
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.
Stone, A. A., & Shiffman, S. (1994). Ecological momentary assessment: Measuring real world processes in behavioural medicine. Annuals of Behavioural Medicine, 16, 199–202.
17.
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.
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.
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.
Hektner, J. M., Schmidt, J. A., & Csikszentmihalyi, M. (2007). Experience sampling method: Measuring the quality of everyday life. California: SAGE.CrossRef
21.
Csikszentmihalyi, M., & Schneider, B. (2001). Conditions for optimal development in adolescence: An experiential approach. Applied Developmental Science, 5(3), 122–124.CrossRef
22.
Csikszentmihalyi, M., & Larson, R. (1984). Being adolescent: Conflict and growth in the teenage years. New York: Basic Books Inc.
23.
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.
Bolger, N., Davis, A., & Rafaeli, E. (2003). Diary methods: Capturing life as it is lived. Annual Review of Psychology, 54, 579–616.CrossRefPubMed
25.
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.
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.
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.
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.
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.
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.
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.
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.
Csikszentmihalyi, M., & Csikszentmihalyi, I. S. (1988). Optimal experience: Psychological studies of flow in consciousness. New York: Cambridge University Press.CrossRef
34.
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.
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.
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.
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.
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.
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.
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.
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.
Woodcock, R. W., McGrew, K. S., & Meather, N. (2001). Woodcock–Johnson III tests of achievement. ITASCA, IL: Riverside Publishing.
43.
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.
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.
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.
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.
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.
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.
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.
Barrett, L. F., & Barrett, D. J. (2005). ESP, the experience sampling program (Version 4). Boston: GNU Public License.
51.
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.
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.
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.
Baghaei, P. (2008). The Rasch model as a construct validation tool. Rasch Measurement Transactions, 12, 1145–1146.
55.
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.
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.
Linacre, J. M. (1999). Catergory disordering versus step (threshold) disordering. Rasch Measurement Transactions, 3, 103–122.
58.
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.
Warren, C. G. (1990). Powered mobility and its implications. Journal of Rehabilitation and Development, 2, 74–85.
60.
Wright, B., & Stone, M. (1999). Measurement essentials (2nd ed.). Wilmington, Delaware: Wide Range Inc.
61.
62.
Portney, L. G., & Watkins, M. P. (2000). Foundations of clinical research: Applications to practice (2nd ed.). New Jersey: Prentice-Hall Inc.
63.
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

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