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Gepubliceerd in: Quality of Life Research 6/2017

22-02-2017

Predicting parent health-related quality of life: evaluating conceptual models

Auteurs: Ellen K. Defenderfer, Tiffany M. Rybak, W. Hobart Davies, Kristoffer S. Berlin

Gepubliceerd in: Quality of Life Research | Uitgave 6/2017

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Abstract

Purpose

Parents of children with chronic illnesses are at risk for poor health-related quality of life (HRQoL), with numerous identified risk factors, but the most informative statistical model considering their combined impact is unclear. The authors conceptualized risk for poor HRQoL using a summed model, comprehensive multivariate model, and latent profile analysis (LPA).

Methods

Community parents completed an online survey, providing information about demographics, child’s chronic illness, family functioning, and parent and child HRQoL. Parents reported that their children had a variety of chronic conditions (e.g., asthma, headaches, attention deficit/hyperactivity disorder, neurofibromatosis).

Results

The summed model did not account for a significant proportion of variance in parent HRQoL. The comprehensive multivariate model (R 2  = 0.614) and LPA (R 2  = 0.305) both significantly predicted parent HRQoL. The LPA identified two risk profiles for lower HRQoL: parents who reported milder illnesses, but poorer family functioning; and parents who reported greater disease severity, but better family functioning.

Conclusions

Comprehensive multivariate models or LPAs best conceptualize patterns of risk for poor parental HRQoL in the community; though the findings in the current community sample may not extend to parents recruited from specialty clinics whose children may have more severe chronic illnesses. Parents of children with mild chronic conditions are still at risk for poor HRQoL, warranting attention from health care providers.
Literatuur
1.
go back to reference Halfon, N., & Newacheck, P. W. (2010). Evolving notions of childhood chronic illness. Journal of the American Medical Association, 303, 665–666.CrossRefPubMed Halfon, N., & Newacheck, P. W. (2010). Evolving notions of childhood chronic illness. Journal of the American Medical Association, 303, 665–666.CrossRefPubMed
2.
go back to reference Van Cleave, J., Gortmaker, S. L., & Perrin, J. M. (2010). Dynamics of obesity and chronic health conditions among children and youth. Journal of the American Medical Association, 303, 623–630.CrossRefPubMed Van Cleave, J., Gortmaker, S. L., & Perrin, J. M. (2010). Dynamics of obesity and chronic health conditions among children and youth. Journal of the American Medical Association, 303, 623–630.CrossRefPubMed
3.
go back to reference Cousino, M. K., & Hazen, R. A. (2013). Parenting stress among caregivers of children with chronic illness: A systematic review. Journal of Pediatric Psychology, 38, 809–828.CrossRefPubMed Cousino, M. K., & Hazen, R. A. (2013). Parenting stress among caregivers of children with chronic illness: A systematic review. Journal of Pediatric Psychology, 38, 809–828.CrossRefPubMed
5.
go back to reference Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2006). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health: The Journal of the International Society for Pharmacoeconomics and Outcomes Research, 7, 79–92.CrossRef Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2006). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health: The Journal of the International Society for Pharmacoeconomics and Outcomes Research, 7, 79–92.CrossRef
6.
go back to reference Haverman, L., van Oersm, H. A., Maurice-Stam, H., Kuijpers, T. W., Grootenhuis, M. A., & van Rossum, M.A.J. (2014). Health related quality of life and parental perceptions of child vulnerability among parents of children with juvenile idiopathic arthritis: Results from a web-based survey. Pediatric Rheumatology, 12, 34–44.CrossRefPubMedPubMedCentral Haverman, L., van Oersm, H. A., Maurice-Stam, H., Kuijpers, T. W., Grootenhuis, M. A., & van Rossum, M.A.J. (2014). Health related quality of life and parental perceptions of child vulnerability among parents of children with juvenile idiopathic arthritis: Results from a web-based survey. Pediatric Rheumatology, 12, 34–44.CrossRefPubMedPubMedCentral
7.
go back to reference Hunfeld, J.A.M., Perquin, C. W., Duivenvoorden, H. J., Hazebroek-Kampschreur, A.A.J.M., Passchier, J., van Suijlekom-Smit, L.W.A, et al. (2001). Chronic pain and its impact on quality of life in adolescents and their families. Journal of Pediatric Psychology, 26, 145–153.CrossRefPubMed Hunfeld, J.A.M., Perquin, C. W., Duivenvoorden, H. J., Hazebroek-Kampschreur, A.A.J.M., Passchier, J., van Suijlekom-Smit, L.W.A, et al. (2001). Chronic pain and its impact on quality of life in adolescents and their families. Journal of Pediatric Psychology, 26, 145–153.CrossRefPubMed
8.
go back to reference Kunz, J. H., Greenley, R. N., & Howard, M. (2011). Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease. Quality of Life Research, 20, 1197–1204.CrossRefPubMed Kunz, J. H., Greenley, R. N., & Howard, M. (2011). Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease. Quality of Life Research, 20, 1197–1204.CrossRefPubMed
9.
go back to reference Medrano, G. R., Berlin, K. S., Davies, W. H. (2013). Utility of the PedsQL family impact module: Assessing the psychometric properties in a community sample. Quality of Life Research, 22, 2899–2907.CrossRefPubMed Medrano, G. R., Berlin, K. S., Davies, W. H. (2013). Utility of the PedsQL family impact module: Assessing the psychometric properties in a community sample. Quality of Life Research, 22, 2899–2907.CrossRefPubMed
10.
go back to reference Drotar, D., & Bonner, M. S. (2009). Influences on adherence to pediatric asthma treatment: A review of correlates and predictors. Journal of Developmental and Behavioral Pediatrics, 30, 574–582.CrossRefPubMed Drotar, D., & Bonner, M. S. (2009). Influences on adherence to pediatric asthma treatment: A review of correlates and predictors. Journal of Developmental and Behavioral Pediatrics, 30, 574–582.CrossRefPubMed
11.
go back to reference Dobbels, F., Decorte, A., Roskams, A., & Van Damme-Lombaerts, R. (2010). Health-related quality of life, treatment adherence, symptom experience and depression in adolescent renal transplant patients. Pediatric Transplant, 14, 216–223.CrossRef Dobbels, F., Decorte, A., Roskams, A., & Van Damme-Lombaerts, R. (2010). Health-related quality of life, treatment adherence, symptom experience and depression in adolescent renal transplant patients. Pediatric Transplant, 14, 216–223.CrossRef
12.
go back to reference Logan, D. E., & Scharff, L. (2005). Relationships between family and parent characteristics and functional abilities in children with recurrent pain syndromes: An investigation of moderating effects on the pathway from pain to disability. Journal of Pediatric Psychology, 30, 698–707.CrossRefPubMed Logan, D. E., & Scharff, L. (2005). Relationships between family and parent characteristics and functional abilities in children with recurrent pain syndromes: An investigation of moderating effects on the pathway from pain to disability. Journal of Pediatric Psychology, 30, 698–707.CrossRefPubMed
13.
go back to reference De Civita, M., & Dobkin, P. L. (2003). Pediatric adherence as a multidimensional and dynamic construct, involving a triadic partnership. Journal of Pediatric Psychology, 29, 157–169.CrossRef De Civita, M., & Dobkin, P. L. (2003). Pediatric adherence as a multidimensional and dynamic construct, involving a triadic partnership. Journal of Pediatric Psychology, 29, 157–169.CrossRef
14.
go back to reference Stein, R. E., & Jessop, D. J. (1982). A noncategorical approach to chronic childhood illness. Public Health Reports, 97, 354–362.PubMedPubMedCentral Stein, R. E., & Jessop, D. J. (1982). A noncategorical approach to chronic childhood illness. Public Health Reports, 97, 354–362.PubMedPubMedCentral
15.
go back to reference Wallander, J. L., & Varni, J. W. (1992). Adjustment in children with chronic physical disorders: Programmatic research on a disability-stress-coping model. In A. M. La Greca, L. J. Siegel, J. L. Wallander & C. E. Walker (Eds.), Stress and Coping in Child Health (pp. 279–298). New York: The Guilford Press. Wallander, J. L., & Varni, J. W. (1992). Adjustment in children with chronic physical disorders: Programmatic research on a disability-stress-coping model. In A. M. La Greca, L. J. Siegel, J. L. Wallander & C. E. Walker (Eds.), Stress and Coping in Child Health (pp. 279–298). New York: The Guilford Press.
16.
go back to reference Jones, D. J., Forehand, R., Brody, G., & Armistead, L. (2002). Psychosocial adjustment of African American children in single-mother families: A test of three risk models. Journal of Marriage and Family, 64, 105–115.CrossRef Jones, D. J., Forehand, R., Brody, G., & Armistead, L. (2002). Psychosocial adjustment of African American children in single-mother families: A test of three risk models. Journal of Marriage and Family, 64, 105–115.CrossRef
17.
go back to reference Gumidyala, A. P., & Greenley, R. N. (2014). Correlates of health-related quality of life in pediatric inflammatory bowel disease: A cumulative risk model approach. Journal of Pediatric Psychology, 39, 55–64.CrossRefPubMed Gumidyala, A. P., & Greenley, R. N. (2014). Correlates of health-related quality of life in pediatric inflammatory bowel disease: A cumulative risk model approach. Journal of Pediatric Psychology, 39, 55–64.CrossRefPubMed
18.
go back to reference Josie, K. L., Greenley, R. N., & Drotar, D. (2007). Cumulative risk and asthma outcomes in inner-city African-American youth. Journal of Asthma, 44, 5350541.CrossRef Josie, K. L., Greenley, R. N., & Drotar, D. (2007). Cumulative risk and asthma outcomes in inner-city African-American youth. Journal of Asthma, 44, 5350541.CrossRef
19.
go back to reference Greenley, R. N., & Cunningham, C. (2009). Parent quality of life in the context of pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 34, 129–136.CrossRefPubMed Greenley, R. N., & Cunningham, C. (2009). Parent quality of life in the context of pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 34, 129–136.CrossRefPubMed
20.
go back to reference Demirtepe-Sayguli, D., & Bozo, O. (2011). Perceived social support as a moderator of the relationships between caregiver well-being indicators and psychological symptoms. Journal of Health Psychology, 16, 1091–1100.CrossRef Demirtepe-Sayguli, D., & Bozo, O. (2011). Perceived social support as a moderator of the relationships between caregiver well-being indicators and psychological symptoms. Journal of Health Psychology, 16, 1091–1100.CrossRef
21.
go back to reference Gray, W. N., Graef, D. M., Schuman, S. S., Janicke, D. M., & Hommel, K. A. (2013). Parenting stress in pediatric IBD: Relations with child psychopathology, family functioning, and disease severity. Journal of Developmental Behavioral Pediatrics, 34, 237–244.CrossRefPubMedPubMedCentral Gray, W. N., Graef, D. M., Schuman, S. S., Janicke, D. M., & Hommel, K. A. (2013). Parenting stress in pediatric IBD: Relations with child psychopathology, family functioning, and disease severity. Journal of Developmental Behavioral Pediatrics, 34, 237–244.CrossRefPubMedPubMedCentral
22.
go back to reference Moreira, H., Frontini, R., Bullinger, M., & Canavarro, M. C. (2013). Caring for a child with Type 1 diabetes: Links between family cohesion, perceived impact, and parental adjustment. Journal of Family Psychology, 27, 731–742.CrossRefPubMed Moreira, H., Frontini, R., Bullinger, M., & Canavarro, M. C. (2013). Caring for a child with Type 1 diabetes: Links between family cohesion, perceived impact, and parental adjustment. Journal of Family Psychology, 27, 731–742.CrossRefPubMed
23.
go back to reference Bergman, L. R., von Eye, A., & Magnusson, D. (2006). Person-oriented research strategies in developmental psychopathology. In D. Cicchetti & D. J. Cohen (Eds.), Developmental Psychopathology, Vol 1: Theory and method (2nd edn., pp. 850–888). Hoboken, NJ: Wiley. Bergman, L. R., von Eye, A., & Magnusson, D. (2006). Person-oriented research strategies in developmental psychopathology. In D. Cicchetti & D. J. Cohen (Eds.), Developmental Psychopathology, Vol 1: Theory and method (2nd edn., pp. 850–888). Hoboken, NJ: Wiley.
24.
go back to reference Berlin, K. S., Parra, G. R., Williams, N. A. (2014). An introduction to latent variable mixture modeling (part 2): Longitudinal latent class growth analysis and growth mixture models. Journal of Pediatric Psychology, 39, 188–203.CrossRefPubMed Berlin, K. S., Parra, G. R., Williams, N. A. (2014). An introduction to latent variable mixture modeling (part 2): Longitudinal latent class growth analysis and growth mixture models. Journal of Pediatric Psychology, 39, 188–203.CrossRefPubMed
25.
go back to reference Berlin, K. S., Williams, N. A., Parra, G. R. (2014). An introduction to latent variable mixture modeling (part 1): Overview and cross-sectional latent class and latent profile analyses. Journal of Pediatric Psychology, 39, 174–187.CrossRefPubMed Berlin, K. S., Williams, N. A., Parra, G. R. (2014). An introduction to latent variable mixture modeling (part 1): Overview and cross-sectional latent class and latent profile analyses. Journal of Pediatric Psychology, 39, 174–187.CrossRefPubMed
26.
go back to reference Parra, G. R., DuBois, D. L., & Sher, K. J. (2006). Investigation of profiles of risk factors for adolescent psychopathology: A person-centered approach. Journal of Clinical Child and Adolescent Psychology, 35, 386–402.CrossRefPubMed Parra, G. R., DuBois, D. L., & Sher, K. J. (2006). Investigation of profiles of risk factors for adolescent psychopathology: A person-centered approach. Journal of Clinical Child and Adolescent Psychology, 35, 386–402.CrossRefPubMed
27.
go back to reference Berlin, K. S., Karazsia, B. T., Klages, K. L. Research design in pediatric psychology: The state of our science, recommendations, and future considerations. In M. Roberts & R. Steele (Eds.) Handbook of pediatric psychology, 5th Edition. New York: Guilford Press. (in press). Berlin, K. S., Karazsia, B. T., Klages, K. L. Research design in pediatric psychology: The state of our science, recommendations, and future considerations. In M. Roberts & R. Steele (Eds.) Handbook of pediatric psychology, 5th Edition. New York: Guilford Press. (in press).
28.
go back to reference Muthén, B. O. (2001). Latent variable mixture modeling. In G. A. Marcoulides & R. E. Schumacker (Eds.), New developments and techniques in structural equation modeling (pp. 1–33). Mahaw, NJ: Lawrence Erlbaum & Associates. Muthén, B. O. (2001). Latent variable mixture modeling. In G. A. Marcoulides & R. E. Schumacker (Eds.), New developments and techniques in structural equation modeling (pp. 1–33). Mahaw, NJ: Lawrence Erlbaum & Associates.
29.
go back to reference Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL family impact module: Preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55.CrossRefPubMedPubMedCentral Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL family impact module: Preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55.CrossRefPubMedPubMedCentral
30.
go back to reference Stein, R.E.K., Gortmaker, S. L., Perrin, E. C., Perrin, J. M., Pless, I. B., Walker, D. K., et al. (1987). Severity of illness: Concepts and measurements. Lancet, 26, 1506–1509.CrossRef Stein, R.E.K., Gortmaker, S. L., Perrin, E. C., Perrin, J. M., Pless, I. B., Walker, D. K., et al. (1987). Severity of illness: Concepts and measurements. Lancet, 26, 1506–1509.CrossRef
31.
go back to reference Blake, R. L., & McKay, D. A. (1986). A single-item measure of social supports as a predictor of morbidity. Journal of Family Practice, 22, 82–84.PubMed Blake, R. L., & McKay, D. A. (1986). A single-item measure of social supports as a predictor of morbidity. Journal of Family Practice, 22, 82–84.PubMed
32.
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
33.
go back to reference Hainsworth, K. R., Davies, W. H., Anderson Khan, K., & Weisman, S. J. (2007). Development and preliminary validation of the Child Activity Limitations Questionnaire: Flexible and efficient assessment of pain-related functional disability. Journal of Pain, 8, 746–752.CrossRefPubMed Hainsworth, K. R., Davies, W. H., Anderson Khan, K., & Weisman, S. J. (2007). Development and preliminary validation of the Child Activity Limitations Questionnaire: Flexible and efficient assessment of pain-related functional disability. Journal of Pain, 8, 746–752.CrossRefPubMed
34.
go back to reference Schwarz, G. E. (1978). Estimating the dimension of a model. Annals of Statistics, 6(2), 461–464.CrossRef Schwarz, G. E. (1978). Estimating the dimension of a model. Annals of Statistics, 6(2), 461–464.CrossRef
35.
36.
go back to reference Kass, R. E., & Raftery, A. E. (1995). Bayes factors. Journal of the American Statistical Association, 90, 773–795.CrossRef Kass, R. E., & Raftery, A. E. (1995). Bayes factors. Journal of the American Statistical Association, 90, 773–795.CrossRef
37.
go back to reference Raftery, A. E. (1995). Bayesian model selection in social research. Sociological Methodology, 25, 111–163.CrossRef Raftery, A. E. (1995). Bayesian model selection in social research. Sociological Methodology, 25, 111–163.CrossRef
39.
go back to reference Lo, Y., Mendell, N., & Rubin, D. (2001). Testing the number of components in a normal mixture. Biometrika, 88, 767–778.CrossRef Lo, Y., Mendell, N., & Rubin, D. (2001). Testing the number of components in a normal mixture. Biometrika, 88, 767–778.CrossRef
40.
go back to reference McLachlan, G.J., Peel, D. (2000). Finite mixture modeling. New York, NY: Wiley.CrossRef McLachlan, G.J., Peel, D. (2000). Finite mixture modeling. New York, NY: Wiley.CrossRef
41.
go back to reference Vermunt, J. K. (2010). Latent class modeling with covariates: Two improved three-step approaches. Political Analysis, 18, 450–469.CrossRef Vermunt, J. K. (2010). Latent class modeling with covariates: Two improved three-step approaches. Political Analysis, 18, 450–469.CrossRef
42.
go back to reference Eccleston, C., Palermo, T. M., Fisher, E., & Law, E. (2012). Psychological interventions for parents of children and adolescents with chronic illness (review). Cochrane Database of Systematic Reviews, 8, CD009660.PubMedCentral Eccleston, C., Palermo, T. M., Fisher, E., & Law, E. (2012). Psychological interventions for parents of children and adolescents with chronic illness (review). Cochrane Database of Systematic Reviews, 8, CD009660.PubMedCentral
43.
go back to reference Borowsky, S. J., Rubenstein, L. V., Meredith, L. S., Camp, P., Jackson-Triche, M., & Wells, K. B. (2001). Who is at risk of nondetection of mental health problems in primary care? Journal of General Internal Medicine, 15, 381–388.CrossRef Borowsky, S. J., Rubenstein, L. V., Meredith, L. S., Camp, P., Jackson-Triche, M., & Wells, K. B. (2001). Who is at risk of nondetection of mental health problems in primary care? Journal of General Internal Medicine, 15, 381–388.CrossRef
44.
go back to reference Everhart, R. S., Fiese, B. H., & Smyth, J. M. (2008). A cumulative risk model predicting caregiver quality of life in pediatric asthma. Journal of Pediatric Psychology, 33, 809–818.CrossRefPubMedPubMedCentral Everhart, R. S., Fiese, B. H., & Smyth, J. M. (2008). A cumulative risk model predicting caregiver quality of life in pediatric asthma. Journal of Pediatric Psychology, 33, 809–818.CrossRefPubMedPubMedCentral
45.
go back to reference Palermo, T. M., & Chambers, C. T. (2005). Parent and family factors in pediatric chronic pain and disability: An integrative approach. Pain, 119, 1–4.CrossRefPubMed Palermo, T. M., & Chambers, C. T. (2005). Parent and family factors in pediatric chronic pain and disability: An integrative approach. Pain, 119, 1–4.CrossRefPubMed
Metagegevens
Titel
Predicting parent health-related quality of life: evaluating conceptual models
Auteurs
Ellen K. Defenderfer
Tiffany M. Rybak
W. Hobart Davies
Kristoffer S. Berlin
Publicatiedatum
22-02-2017
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 6/2017
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1491-3

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