Abstract
Background
This study aims to examine the relationship between parents’ fear of hypoglycemia (FH) over a 1-year period and child glucose metrics in 126 families of youth recently diagnosed with type 1 diabetes (T1D).
Methods
Parents completed the Hypoglycemia Fear Survey for Parents (HFS-P) and uploaded 14 days of glucose data at a baseline, 6-month, and 12-month assessment.
Results
Parents’ HFS-P total and worry scores increased to a clinically meaningful degree from baseline to 6-month assessment, while multilevel models revealed within- and between-person variability in parents’ HFS-P worry and behavior scores over time associated with child glycemia. Specifically, a significant negative relationship for within-person worry scores suggested that when parents reported higher than their average worry scores, their children recorded fewer glucose values in the target range, while within-person behavior scores suggested that when parents reported lower than their average behavior scores, their children recorded more values above the target range. There was also a negative relationship for between-person behavior scores with child glycated hemoglobin and a positive relationship for between-person behavior scores with child glucose values in the target range.
Conclusions
In the recent-onset period of T1D, parental FH worry and behavior associated with child glycemia possibly due to changes in parents’ perceptions of their child’s hypoglycemia risk. The clinically meaningful increases in parent FH in the recent-onset period and the negative association for between-person behavior scores with child glycated hemoglobin suggest that clinics should consider screening parents for FH, especially among parents of children with lower glycemic levels.
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Please contact corresponding author for underlying materials presented in this manuscript.
References
Centers for Disease Control and Prevention (CDC). Diabetes Report Card 2017. Atlanta, GA; 2018.
Patterson CC, Karuranga S, Salpea P, Saeedi P, Dahlquist G, Soltesz G, Ogle GD. Worldwide estimates of incidence, prevalence and mortality of type 1 diabetes in children and adolescents: Results from the International Diabetes Federation Diabetes Atlas, 9th edition. Diabetes Res Clin Pract. 2019;157:107842.
Chiang JL, Kirkman MS, Laffel LMB, Peters AL. Type 1 diabetes through the life span: a position statement of the American Diabetes Association. Diabetes Care. 2014;37:2034–54.
Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Heal Expect. 2014;19:580–91.
Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Stephen J, et al. Pathways to diagnosis: a qualitative study of the experiences and emotional reactions of parents of children diagnosed with type 1 diabetes. Pediatr Diabetes. 2014;15:591–8.
Whittemore R, Jaser S, Chao A, Jang M, Grey M. Psychological experience of parents of children with type 1 diabetes: a systematic mixed-studies review. Diabetes Educ. 2012;38:562–79.
Streisand R, Mackey ER, Elliot BM, Mednick L, Slaughter IM, Turek J, et al. Parental anxiety and depression associated with caring for a child newly diagnosed with type 1 diabetes: opportunities for education and counseling. Patient Educ Couns. 2008;73:333–8.
Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents. J Adv Nurs. 2005;50:253–61.
Shalitin S, Phillip M. Hypoglycemia in type 1 diabetes: a still unresolved problem in the era of insulin analogs and pump therapy. Diabetes Care. 2008;31:S121–4.
Seaquist ER, Anderson J, Childs B, Cryer P, Dagogo-Jack S, Fish L, et al. Hypoglycemia and diabetes: a report of a workgroup of the American Diabetes Association and the Endocrine Society. J Clin Endocrinol Metab. 2013;98:1845–59.
Ly TT, Maahs DM, Rewers A, Dunger D, Oduwole A, Jones TW. Assessment and management of hypoglycemia in children and adolescents with diabetes. Pediatr Diabetes. 2014;15:180–92.
Clarke W, Jones T, Rewers A, Dunger D, Klingensmith GJ. Assessment and management of hypoglycemia in children and adolescents with diabetes. Pediatr Diabetes. 2009;10:134–45.
Abraham MB, Jones TW, Naranjo D, Karges B, Oduwole A, Tauschmann M, et al. ISPAD Clinical Practice Consensus Guidelines 2018: assessment and management of hypoglycemia in children and adolescents with diabetes. Pediatr Diabetes. 2018;19:178–92.
Buckingham B, Wilson DM, Lecher T, Hanas R, Kaiserman K, Cameron F. Duration of nocturnal hypoglycemia before seizures. Diabetes Care. 2008;31:2110–2.
Martín-Timón I, del Cañizo-Gómez FJ. Mechanisms of hypoglycemia unawareness and implications in diabetic patients. World J Diabetes. 2015;6:912–26.
Gonder-Frederick LA, Nyer M, Shepard JA, Vajda K, Clarke W. Assessing fear of hypoglycemia in children with type 1 diabetes and their parents. Diabetes Manag. 2011;1:627–39.
Driscoll KA, Raymond J, Naranjo D, Patton SR. Fear of hypoglycemia in children and adolescents and their parents with type 1 diabetes. Curr Diab Rep. 2016;16:627–39.
Barnard KD, Thomas S, Royle P, Noyes K, Waugh N. Fear of hypoglycaemia in parents of young children with type 1 diabetes: a systematic review. BMC Pediatr. 2010;10:50.
Haugstvedt A, Wentzel-Larsen T, Rokne B, Graue M. Perceived family burden and emotional distress: similarities and differences between mothers and fathers of children with type 1 diabetes in a population-based study. Pediatr Diabetes. 2011;12:107–14.
Johnson SR, Cooper MN, Davis EA, Jones TW. Hypoglycaemia, fear of hypoglycaemia and quality of life in children with type 1 diabetes and their parents. Diabet Med. 2013;30:1126–31.
Freckleton E, Sharpe L, Mullan B. The relationship between maternal fear of hypoglycaemia and adherence in children with type 1 diabetes. Int J Behav Med. 2014;21:804–10.
Patton SR, Dolan LM, Henry R, Powers SW. Parental fear of hypoglycemia: young children treated with continuous subcutaneous insulin infusion. Pediatr Diabetes. 2007;8:362–8.
American Diabetes Association. 13. Children and adolescents: standards of medical care in diabetes—2021. Diabetes Care. 2021;44:S180–99.
Pierce JS, Kozikowski C, Lee JM, Wysocki T. Type 1 diabetes in very young children: a model of parent and child influences on management and outcomes. Pediatr Diabetes. 2017;18:17–25.
Haugstvedt A, Wentzel-Larsen T, Graue M, Søvik O, Rokne B. Fear of hypoglycaemia in mothers and fathers of children with type 1 diabetes is associated with poor glycaemic control and parental emotional distress: a population-based study. Diabet Med. 2010;27:72–8.
Viaene AS, Van Daele T, Bleys D, Faust K, Massa GG. Fear of hypoglycemia, parenting stress, and metabolic control for children with type 1 diabetes and their parents. J Clin Psychol Med Settings. 2017;24:74–81.
Herbert LJ, Monaghan M, Cogen F, Streisand R. The impact of parents’ sleep quality and hypoglycemia worry on diabetes self-efficacy. Behav Sleep Med. 2015;13:308–23.
Beck RW, Connor CG, Mullen DM, Wesley DM, Bergenstal RM. The fallacy of average: how using HbA1c alone to assess glycemic control can be misleading. Diabetes Care. 2017;40:994–9.
Schnell O, Barnard KD, Bergenstal R, Bosi E, Garg S, Guerci B, et al. Clinical utility of SMBG: recommendations on the use and reporting of SMBG in clinical research. Diabetes Care. 2015;38:1627–33.
Clements MA, Lind M, Raman S, Patton SR, Lipska KJ, Fridlington AG, et al. Age at diagnosis predicts deterioration in glycaemic control among children and adolescents with type 1 diabetes. BMJ Open Diabetes Res Care. 2014;2:e000039.
Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)-a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42:377–81.
Clarke WL, Gonder-Frederick LA, Snyder AL, Cox DJ. Maternal fear of hypoglycemia in their children with insulin dependent diabetes mellitus. J Pediatr Endocrinol Metab. 1998;11:189–94.
Shepard JA, Vajda K, Nyer M, Clarke W, Gonder-Frederick LA. Understanding the construct of fear of hypoglycemia in pediatric type 1 diabetes. J Pediatr Psychol. 2014;39:1115–25.
O’Donnell HK, Bennett Johnson S, Sileo D, Majidi S, Gonder-Frederick LA, Driscoll KA. Psychometric properties of the Hypoglycemia Fear Survey in a clinical sample of adolescents with type 1 diabetes and their caregivers. J Pediatr Psychol. 2022;47:195–205.
Bergenstal RM, Ahmann AJ, Bailey T, Beck RW, Bissen J, Buckingham B, et al. Recommendations for standardizing glucose reporting and analysis to optimize clinical decision making in diabetes: the ambulatory glucose profile (AGP). Diabetes Technol Ther. 2013;15:198–211.
Beck RW, Bocchino LE, Lum JW, Kollman C, Barnes-Lomen V, Sulik M, et al. An evaluation of two capillary sample collection kits for laboratory measurement of HbA1c. Diabetes Technol Ther. 2021;23(8):537–45.
Revicki D, Hays RD, Cella D, Sloan J. Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. J Clin Epidemiol. 2008: 102–9.
Enders CK. The performance of the full information maximum likelihood estimator in multiple regression models with missing data. Educ Psychol Meas. 2001;61:713–40.
Kline RB. Data preparation and psychometrics review. Princ Pract Struct Equ Model. 4th ed. New Yprk: Guilford publications; 2015.
Hartley CA, Phelps EA. Changing fear: the neurocircuitry of emotion regulation. Neuropsychopharmacology. 2010;35:136–46.
Green L, Feher M, Catalan J. Fears and phobias in people with diabetes. Diabetes Metab Res Rev. 2000;16:287–93.
Van Name MA, Hilliard ME, Boyle CT, Miller KM, DeSalvo DJ, Anderson BJ, et al. Nighttime is the worst time: parental fear of hypoglycemia in young children with type 1 diabetes. Pediatr Diabetes. 2018;19:114–20.
Macaulay GC, Boucher SE, Yogarajah A, Galland BC, Wheeler BJ. Sleep and night-time caregiving in parents of children and adolescents with type 1 diabetes mellitus: a qualitative study. Behav Sleep Med. 2020;18:622–36.
Sullivan-Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Constant vigilance: mothers’ work parenting young children with type 1 diabetes. J Pediatr Nurs. 2003;18:21–9.
Monaghan M, Sanders RE, Kelly KP, Cogen FR, Streisand R. Using qualitative methods to guide clinical trial design: parent recommendations for intervention modification in type 1 diabetes. J Fam Psychol. 2011;25:868–72.
Patton SR, Clements MA, Marker AM, Nelson E. Intervention to reduce hypoglycemia fear in parents of young kids using video-based telehealth (REDCHiP). Pediatr Diabetes. 2020;21:112–9.
Marker AM, Monzon AD, Nelson E-L, Clements MA, Patton S. An intervention to reduce hypoglycemia fear in parents of young kids with type 1 diabetes via video-based telemedicine (REDCHIP): trial design, feasibility, and acceptability. Diabetes Technol Ther. 2020;22:25–33.
Writing Team for the Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications Research Group. Sustained effect of intensive treatment of type 1 diabetes mellitus on development and progression of diabetic nephropathy: the Epidemiology of Diabetes Interventions and Complications (EDIC) Study. J Am Med Assoc. 2003;290:2159–67.
Aschner PJ, Ruiz AJ. Metabolic memory for vascular disease in diabetes. Diabetes Technol Ther. 2012;14:S68-74.
Driscoll KA, Wang Y, Bennett Johnson S, Lynch R, Stephens H, Willbur K, et al. White coat adherence in pediatric patients with type 1 diabetes who use insulin pumps. J Diabetes Sci Technol. 2016;10:724–9.
Abdul-Rasoul M, Habib H, Al-Khouly M. ‘The honeymoon phase’ in children with type 1 diabetes mellitus: frequency, duration, and influential factors. Pediatr Diabetes. 2006;7(2):101–7.
Cengiz E, Cheng P, Ruedy KJ, et al. Clinical outcomes in youth beyond the first year of type 1 diabetes: Results of the Pediatric Diabetes Consortium (PDC) type 1 diabetes new onset (NeOn) study. Pediatr Diabetes. 2017;18(7):566–73.
Patton SR, Feldman K, Majidi S, Noser A, Clements MA. Identifying HbA1c trajectories and modifiable risk factors of trajectories in 5- to 9-year-olds with recent-onset type 1 diabetes from the United States. Diabet Med. 2021;38(9):e14637.
Acknowledgements
The authors thank the families who participated in the TACKLE-T1D Study.
Funding
This research was supported by a grant R01-DK100779 from the National Institutes of Health/National Institute of Diabetes and Digestive and Kidney Diseases.
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Contributions
SRP and MAC secured funding for the present study and designed the initial study concept. SRP, MAC, and SM oversaw data collection. ADM conducted the statistical analyses. ADM and SRP wrote the initial manuscript draft. All authors edited and approved final manuscript.
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The Institutional Review Boards at participating hospitals approved all study procedures prior to recruitment. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
Consent to Participate
All families provided written informed consent and assent prior to study procedures.
Conflict of Interest
No competing financial interests exist for authors ADM, SM, and SRP. MAC is the chief medical officer for Glooko, has consulted with Medtronic Diabetes, Eli Lilly, and receives research support from Abbott Diabetes.
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Monzon, A.D., Majidi, S., Clements, M.A. et al. The Relationship Between Parent Fear of Hypoglycemia and Youth Glycemic Control Across the Recent-Onset Period in Families of Youth with Type 1 Diabetes. Int.J. Behav. Med. 31, 64–74 (2024). https://doi.org/10.1007/s12529-023-10159-0
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DOI: https://doi.org/10.1007/s12529-023-10159-0