Attrition in Randomized Controlled Trials for Pediatric Chronic Conditions

Karlson, C. W.; Rapoff, M. A.

doi:10.1093/jpepsy/jsn122

Cited by 162Meta-analysis and systematic reviewsStatistical Methods in Clinical TrialsEthics in Clinical Research

Attrition in Randomized Controlled Trials for Pediatric Chronic Conditions

Karlson, C. W., Rapoff, M. A.·2009·Journal of Pediatric Psychology

DOI 10.1093/jpepsy/jsn122

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Abstract

OBJECTIVE: To examine attrition variables in randomized controlled trials of cognitive behavioral interventions for children with chronic illnesses. METHODS: We examined attrition rates reported on 40 randomized cognitive behavioral interventions published in six pediatric research journals, during the years 2002-2007. Intervention focus was limited to children with a chronic medical condition, such as asthma, obesity, arthritis, diabetes, cancer, sickle cell disease, and cystic fibrosis. RESULTS: Mean rate of enrollment refusal was 37% (range 0-75%). Mean attrition rate was 20% (range 0-54%) for initial follow-up and 32% (range 0-59%) for extended follow-up. Of the reviewed articles, 40% included a CONSORT diagram. CONCLUSIONS: Strategies that can be used to limit attrition include tailoring recruitment to the study population, providing personalized feedback, maintaining consistent study procedures, providing incentives, and using intensive tracking measures. There is a need for standardized definitions and reporting of attrition rates in randomized cognitive behavioral intervention studies.

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More than one-third of adolescents and young adults decline traditional cognitive behavioral therapy.
“More than one-third decline traditional cognitive behavioral therapy (CBT)”
From Promoting resilience in adolescents and young adults with cancer: Results from the PRISM randomized controlled trial (2018) · cites this paper as [21]
An additional one-third of adolescents and young adults discontinue cognitive behavioral therapy because of its typical time commitment.
“and an additional one-third discontinue participation because of CBT's typical time commitment.21”
From Promoting resilience in adolescents and young adults with cancer: Results from the PRISM randomized controlled trial (2018) · cites this paper as [21]

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McArthur, G. M., Eve, P., Jones, K., Banales, E., Kohnen, S., Anandakumar, T., Larsen, L., Marinus, E., Wang, H., & Castles, A. E. (2012) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd009115.pub2 · Cited by 160 · see citing works
A systematic review of psychological interventions for adolescents and young adults living with chronic illness
Sansom-Daly, U. M., Peate, M., Wakefield, C. E., Bryant, R. A., & Cohn, R. J. (2012) · Health Psychology · doi:10.1037/a0025977 · Cited by 157 · see citing works
Associations between the neighbourhood built environment and out of school physical activity and active travel: An examination from the Kids in the City study
Oliver, M., Mavoa, S., Badland, H. M., Parker, K., Donovan, P., KEARNS, R. A., Lin, E.-Y. J., & Witten, K. (2015) · Health & Place · doi:10.1016/j.healthplace.2015.09.005 · Cited by 107 · see citing works
“The need to engage children and families from lower socioeconomic backgrounds and minority ethnic population groups in child health research is widely recognised and acknowledged as being challenging and rarely achieved (Brannon et al., 2013; Karlson and Rapoff, 2009; Schoeppe et al., 2013b).”
Background
Measuring and reporting attrition from obesity treatment programs: A call to action!
Miller, B. M. L., & Brennan, L. (2014) · Obesity Research & Clinical Practice · doi:10.1016/j.orcp.2014.08.007 · Cited by 103 · see citing works
Identifying the participant characteristics that predict recruitment and retention of participants to randomised controlled trials involving children: a systematic review
Robinson, L., Adair, P., Coffey, M., Harris, R., & Burnside, G. (2016) · Trials · doi:10.1186/s13063-016-1415-0 · Cited by 92 · see citing works
“However, the reliability of results can be compromised when non-random subsets of participants who enrol or remain on a study are significantly different from those who choose not to take part or subsequently drop out [2].”
Background
Interventions to improve the mental health of children and young people with long-term physical conditions: linked evidence syntheses
Moore, D. A., Nunns, M., Shaw, L., Rogers, M., Walker, E., Ford, T. J., Garside, R., Ukoumunne, O. C., Titman, P., Shafran, R., et al. (2019) · Health Technology Assessment · doi:10.3310/hta23220 · Cited by 97 · see citing works
Promoting Resilience in Stress Management for Parents (PRISM-P): An intervention for caregivers of youth with serious illness.
Yi‐Frazier, J. P., Fladeboe, K., Klein, V., Eaton, L. E., Wharton, C. M., McCauley, E., & Rosenberg, A. R. (2017) · Families Systems & Health · doi:10.1037/fsh0000281 · Cited by 89 · see citing works
“The brief format intentionally avoided the extended duration of traditional cognitive–behavioral models of intervention (Karlson & Rapoff, 2009) and was chosen based on a priori goals to maximize availability to participate in this intervention.”
Method
Evaluation of a Cognitive–Behavioral Pain Management Program for Children with Chronic Abdominal Pain: A Randomized Controlled Study
Groß, M., & Warschburger, P. (2012) · International Journal of Behavioral Medicine · doi:10.1007/s12529-012-9228-3 · Cited by 87 · see citing works
Motivational interviewing targeting diet and physical activity improves adherence to paediatric obesity treatment: results from the <scp><i>MI</i></scp> <i>Values</i> randomized controlled trial
Bean, M. K., Powell, P., Quinoy, A., Ingersoll, K., Wickham, E. P., & Mazzeo, S. E. (2015) · Pediatric Obesity · doi:10.1111/j.2047-6310.2014.226.x · Cited by 83 · see citing works
“Many strategies are recommended to address treatment adherence, including implementing a culturally sensitive intervention, using an easily accessible location, providing incentives and making frequent participant contact (5).”
Phonics training for English-speaking poor readers
McArthur, G. M., Sheehan, Y., Badcock, N. A., Francis, D. A., Wang, H., Kohnen, S., Banales, E., Anandakumar, T., Marinus, E., & Castles, A. E. (2018) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd009115.pub3 · Cited by 80 · see citing works
Recruitment and Retention of Children in Behavioral Health Risk Factor Studies: REACH Strategies
Schöeppe, S., Oliver, M., Badland, H. M., Burke, M., & Duncan, M. J. (2013) · International Journal of Behavioral Medicine · doi:10.1007/s12529-013-9347-5 · Cited by 78 · see citing works
“For example, children from socioeconomically disadvantaged families, ethnic minorities, and those at risk of ill health tend to drop out of studies [3].”
Background
Pilot study of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: Coping Openly and Personally with Epilepsy (COPE)
Wagner, J. L., Smith, G. M., Ferguson, P. L., van Bakergem, K., & Hrisko, S. (2010) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2010.04.019 · Cited by 76 · see citing works
“The participation rate for this study was certainly lower than the published 37% for cognitive-behavioral interventions in youth with a chronic illness; however, our target population has characteristics that have been shown to suppress participation, such as milder behavioral and emotional concerns and limited contac…”
Influential
Psychosocial issues for children with epilepsy
Rodenburg, R., Wagner, J. L., AUSTIN, J. K., Kerr, M., & Dunn, D. W. (2011) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2011.04.063 · Cited by 75 · see citing works
Quality of Survival and Growth in Children and Young Adults in the PNET4 European Controlled Trial of Hyperfractionated Versus Conventional Radiation Therapy for Standard-Risk Medulloblastoma
Kennedy, C., Bull, K., Chevignard, M., Culliford, D. J., Dörr, H. G., Doz, F., Kortmann, R., Lannering, B., Massimino, M., Gutiérrez, A. N., et al. (2013) · International Journal of Radiation Oncology*Biology*Physics · doi:10.1016/j.ijrobp.2013.09.046 · Cited by 75 · see citing works
Rates of attrition, non-compliance and missingness in randomized controlled trials of child physical activity interventions using accelerometers: A brief methodological review
Howie, E. K., & Straker, L. M. (2016) · Journal of science and medicine in sport · doi:10.1016/j.jsams.2015.12.520 · Cited by 71 · see citing works
A Randomised-Controlled Trial of Vitamin D and Omega-3 Long Chain Polyunsaturated Fatty Acids in the Treatment of Core Symptoms of Autism Spectrum Disorder in Children
Mazahery, H., Conlon, C. A., Beck, K. L., Mugridge, O., Kruger, M. C., Stonehouse, W., Camargo, C. A., Meyer, B. J., Tsang, B., Jones, B., et al. (2019) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-018-3860-y · Cited by 70 · see citing works
Factors Associated With Dropout During Recruitment and Follow-Up Periods of a mHealth-Based Randomized Controlled Trial for Mobile.Net to Encourage Treatment Adherence for People With Serious Mental Health Problems
Kannisto, K. A., Korhonen, J., Adams, C. E., Koivunen, M. H., Vahlberg, T., & Välimäki, M. A. (2017) · Journal of Medical Internet Research · doi:10.2196/jmir.6417 · Cited by 69 · see citing works
“Attrition data were categorized into two groups: (1) attrition during SMS text message intervention and (2) attrition during the 12-month follow-up period [29].”
Method
Handling trial participants with missing outcome data when conducting a meta-analysis: a systematic survey of proposed approaches
Akl, E. A., Kahale, L. A., Agoritsas, T., Brignardello-Petersen, R., Busse, J. W., Carrasco-Labra, A., Ebrahim, S., Johnston, B. C., Neumann, I., Sola, I., et al. (2015) · Systematic Reviews · doi:10.1186/s13643-015-0083-6 · Cited by 66 · see citing works
“up [13].”
An Intervention by a Patient-Designed Do-It-Yourself Mobile Device App Reduces HbA1c in Children and Adolescents with Type 1 Diabetes: A Randomized Double-Crossover Study
Klee, P., Bussien, C., Castellsague, M., Combescure, C., Dirlewanger, M., Girardin, C. M., Mando, J.-L., Perrenoud, L., Salomon, C. G., Schneider, F., et al. (2018) · Diabetes Technology & Therapeutics · doi:10.1089/dia.2018.0255 · Cited by 64 · see citing works
“19 Risk factors for noncompliance were older age and longer duration of diabetes.”
Parent-only interventions in the treatment of childhood obesity: a systematic review of randomized controlled trials
Ewald, H., Kirby, J., Rees, K., & Robertson, W. (2013) · Journal of Public Health · doi:10.1093/pubmed/fdt108 · Cited by 57 · see citing works
Predictors of Attendance in a Practical Clinical Trial of Two Pediatric Weight Management Interventions
Jensen, C. D., Aylward, B. S., & Steele, R. G. (2012) · Obesity · doi:10.1038/oby.2012.96 · Cited by 54 · see citing works
“, preinclusion, baseline assessment, prior to completion of intervention, lost to follow-up (16)).”
Background
Conservative treatment for uncomplicated appendicitis in children: the CONTRACT feasibility study, including feasibility RCT
Hall, N. J., Sherratt, F. C., Eaton, S. D., Reading, I., Walker, E., Chorozoglou, M., Beasant, L., Wood, W., Stanton, M. P., Corbett, H. J., et al. (2021) · Health Technology Assessment · doi:10.3310/hta25100 · Cited by 51 · see citing works
Initial development of a questionnaire evaluating perceived benefits and barriers to pediatric clinical trials participation
Barakat, L. P., Patterson, C. A., Mondestin, V., Chávez, V., Austin, T., Robinson, M. R., Li, Y., Smith‐Whitley, K., & Cohen, R. T. (2012) · Contemporary Clinical Trials · doi:10.1016/j.cct.2012.11.001 · Cited by 50 · see citing works
“Recruitment and retention rates in cognitive behavioral intervention trials for children with chronic medical conditions are particularly low [5].”
BackgroundResult
Longitudinal analysis of quality‐of‐life outcomes in children during treatment for acute lymphoblastic leukemia: A report from the Children's Oncology Group AALL0932 trial
Zheng, D. J., Lu, X., Schore, R. J., Balsamo, L. M., Devidas, M., Winick, N. J., Raetz, E. A., Loh, M. L., Carroll, W. L., Sung, L., et al. (2017) · Cancer · doi:10.1002/cncr.31085 · Cited by 49 · see citing works
“Attrition and missing data are a common problem in large studies of pediatric patients with chronic disease.(44) When comparing participants who completed the final evaluation versus those who did not, we found that girls and those with better physical functioning at 2 months were more likely to complete the final eva…”
Background
A values-based Motivational Interviewing (MI) intervention for pediatric obesity: Study design and methods for MI Values
Bean, M. K., Mazzeo, S. E., Stern, M., Bowen, D. J., & Ingersoll, K. S. (2011) · Contemporary Clinical Trials · doi:10.1016/j.cct.2011.04.010 · Cited by 47 · see citing works
“To increase effectiveness, strategies to enhance compliance with treatment and reduce attrition (often ≥50% [8]) are needed, as adolescents who adhere to treatment recommendations (i.”
Background
Coping skills for reducing pain and somatic symptoms in adolescents with IBD
McCormick, M., Reed-Knight, B., Lewis, J. D., Gold, B. D., & Blount, R. L. (2010) · Inflammatory Bowel Diseases · doi:10.1002/ibd.21302 · Cited by 46 · see citing works
Predicting reading ability in teenagers who are deaf or hard of hearing: A longitudinal analysis of language and reading
Worsfold, S., Mahon, M., Pimperton, H., Stevenson, J., & Kennedy, C. (2018) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2018.04.007 · Cited by 45 · see citing works
Headstrong intervention for pediatric migraine headache: a randomized clinical trial
Rapoff, M. A., Connelly, M. A., Bickel, J. L., Powers, S. W., Hershey, A. D., Allen, J. R., Karlson, C., Litzenburg, C. C., & Belmont, J. M. (2014) · The Journal of Headache and Pain · doi:10.1186/1129-2377-15-12 · Cited by 44 · see citing works
“and having improved tracking systems may also help minimize attrition in the future [33].”
BackgroundSelf-citation
Attrition in a 30-year follow-up of a perinatal birth risk cohort: factors change with age
Launes, J., Hokkanen, L., Laasonen, M. R., Tuulio‐Henriksson, A., Virta, M., Lipsanen, J. O., Tienari, P. J., & Michelsson, K. (2014) · PeerJ · doi:10.7717/peerj.480 · Cited by 39 · see citing works
Adherence to study medication and visits: Data from the BABY HUG trial
Thornburg, C. D., Rogers, Z. R., Jeng, M., RANA, S. R., Iyer, R. V., Faughnan, L., Hassen-Schilling, L., Marshall, J., McDonald, R. P., Wang, W. C., et al. (2009) · Pediatric Blood & Cancer · doi:10.1002/pbc.22324 · Cited by 39 · see citing works
“Prior studies have evaluated predictors of attrition and adherence with study procedures in pediatric clinical trials [8–15].”
Method
Lessons Learned From a Randomized Controlled Trial of a Family-Based Intervention to Promote School Functioning for School-Age Children With Sickle Cell Disease.
Daniel, L. C., Li, Y.-M., Smith, K. E., Tarazi, R. A., Robinson, M., Patterson, C. A., Smith-Whitley, K., Stuart, M. J., & Barakat, L. (2015) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsv063 · Cited by 40 · see citing works
“…participatory strategies such as focus groups and a peer patient navigator to improve intervention uptake owing to high rates of attrition in pediatric psychology (Karlson & Rapoff, 2009) and SCD-specific intervention trials (Barakat, Schwartz, Salamon, & Radcliffe, 2010; Kaslow et al., 1997).”
Background
The OutSMARTers Program for Children With ADHD
Hannesdottir, D. K., Ingvarsdottir, E., & Bjornsson, A. S. (2014) · Journal of Attention Disorders · doi:10.1177/1087054713520617 · Cited by 38 · see citing works
“For example, CBT for children with chronic illnesses has had 20% attrition on average with 37% of eligible participants refusing to enroll in treatment (Karlson & Rapoff, 2009).”
Background
Enrollment experiences in a pediatric longitudinal observational study: The Environmental Determinants of Diabetes in the Young (TEDDY) study
Lernmark, B., Johnson, S. B., Vehik, K., Smith, L. B., Ballard, L., Baxter, J., McLeod, W., Roth, R., & Simell, T. T. (2011) · Contemporary Clinical Trials · doi:10.1016/j.cct.2011.03.009 · Cited by 38 · see citing works
“For behavioral pediatric trials in children with chronic conditions, an overall enrollment rate of 63% has been reported [1].”
Engaging families in physical activity research: a family-based focus group study
Brown, H. E., Schiff, A., & van Sluijs, E. M. F. (2015) · BMC Public Health · doi:10.1186/s12889-015-2497-4 · Cited by 37 · see citing works
Feasibility of a pediatric cognitive-behavioral self-management intervention: Coping Openly and Personally with Epilepsy (COPE)
Wagner, J. L., Smith, G. M., Ferguson, P. L., van Bakergem, K., & Hrisko, S. (2011) · Seizure · doi:10.1016/j.seizure.2011.02.010 · Cited by 36 · see citing works
Text Messaging Effect on Adherence in Children With Inflammatory Bowel Disease
Miloh, T., Shub, M. D., Montes, R. G., Ingebo, K. R., Silber, G. H., & Pasternak, B. A. (2016) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000001399 · Cited by 34 · see citing works
“Studying adolescents is known to be challenging, with high attrition rates up to 32% and is higher when initial follow-up interval is increased (18).”
Background
Factors Associated with Attrition of Adult Participants in a Longitudinal Database: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study
Bamer, A. M., McMullen, K. A., Gibran, N. S., Holavanahalli, R. K., Schneider, J. C., Carrougher, G. J., WIECHMAN, S. A., Wolfe, A. E., & Amtmann, D. (2019) · Journal of Burn Care & Research · doi:10.1093/jbcr/irz186 · Cited by 35 · see citing works
Three challenges described for identifying participants with missing data in trials reports, and potential solutions suggested to systematic reviewers
Akl, E. A., Kahale, L. A., Ebrahim, S., Alonso‐Coello, P., Schünemann, H. J., & Guyatt, G. H. (2016) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2016.02.022 · Cited by 32 · see citing works
Evaluation of a community-based, family focused healthy weights initiative using the RE-AIM framework
Jung, M. E., Bourne, J. E., & Gainforth, H. L. (2018) · International Journal of Behavioral Nutrition and Physical Activity · doi:10.1186/s12966-017-0638-0 · Cited by 31 · see citing works
“In addition to recruitment challenges, high attrition rates were reported, similar to those seen in previous research with children of ethnic minorities and from low socio-economic families [27].”
Result
Predictors of study completion and withdrawal in a randomized clinical trial of a pediatric diabetes adherence intervention
Driscoll, K. A., Killian, M., Johnson, S. B., Silverstein, J. H., & Deeb, L. C. (2009) · Contemporary Clinical Trials · doi:10.1016/j.cct.2009.01.008 · Cited by 29 · see citing works
The engagement pathway: A conceptual framework of engagement-related terms in weight management
Nobles, J., Perez, A. J., Skelton, J. A., Spence, N. D., & Ball, G. D. C. (2018) · Obesity Research & Clinical Practice · doi:10.1016/j.orcp.2017.12.005 · Cited by 28 · see citing works
“, smok58 ing cessation, cardiac rehabilitation, and physical 59 activity) [1,2,8,9].”
Background
A Pilot Study of Yoga for Chronic Headaches in Youth: Promise Amidst Challenges
Hainsworth, K. R., Salamon, K. S., Khan, K. A., Mascarenhas, B., Davies, W. H., & Weisman, S. J. (2013) · Pain Management Nursing · doi:10.1016/j.pmn.2012.12.002 · Cited by 27 · see citing works
E-Health Interventions in Pediatrics
Rapoff, M. A. (2013) · Clinical Practice in Pediatric Psychology · doi:10.1037/cpp0000038 · Cited by 27 · see citing works
Self-citation
Sugarsquare, a Web-Based Patient Portal for Parents of a Child With Type 1 Diabetes: Multicenter Randomized Controlled Feasibility Trial
Boogerd, E. A., Schaaijk, N. M.-V., Sas, T., Boers, A. C.-D., Smallenbroek, M., Nuboer, R., Noordam, C., & Verhaak, C. M. (2017) · Journal of Medical Internet Research · doi:10.2196/jmir.6639 · Cited by 28 · see citing works
“%) fell within the ranges described in the review by Karlson and Rapoff (2009), who found the refusal rates in eHealth studies to be ranging from 0% to 75% (mean 37”
Feasibility of implementing mobile technology-delivered mental health treatment in routine adult sickle cell disease care.
Jonassaint, C. R., Kang, C., Prussien, K. V., Yarboi, J., Sanger, M., Wilson, J. D., Castro, L. D., Shah, N., & Sarkar, U. (2018) · Translational Behavioral Medicine · doi:10.1093/tbm/iby107 · Cited by 21 · see citing works
“This was particularly surprising given reports of high dropout (>25%) in studies with this population [43,44] and an average of 20% attrition rate among similar CBT trials [45].”
Result
Exploratory analysis of treatment response trajectories in the PRISM trial: Models of psychosocial care
Lau, N., Bradford, M. C., Steineck, A., Junkins, C. C., Yi‐Frazier, J. P., McCauley, E., & Rosenberg, A. R. (2019) · Psycho-Oncology · doi:10.1002/pon.5098 · Cited by 26 · see citing works
“Such time commitments may be prohibitive for AYAs with cancer and their caregivers.(21) Additionally, having a trained doctoral‐ level psychologist that provides individual therapy to all cancer patients is infeasible because of personnel shortages.”
Background
Emotional and behaviour difficulties in teenagers with permanent childhood hearing loss
Stevenson, J., Pimperton, H., Kreppner, J., Worsfold, S., Terlektsi, E., & Kennedy, C. (2017) · International Journal of Pediatric Otorhinolaryngology · doi:10.1016/j.ijporl.2017.07.031 · Cited by 26 · see citing works
“This attrition rate is nevertheless low for a longitudinal study of a teenage population with a long-term medical condition [35].”
Background
Design programmes to maximise participant engagement: a predictive study of programme and participant characteristics associated with engagement in paediatric weight management
Nobles, J., Griffiths, C., Pringle, A., & Gately, P. (2016) · International Journal of Behavioral Nutrition and Physical Activity · doi:10.1186/s12966-016-0399-1 · Cited by 25 · see citing works
“Participant dropout, and consequent programme attrition, challenges programme effectiveness, both in WM 13, 14 and in chronic ill health management [9 – 13].”
Virtual mind-body treatment for geographically diverse youth with neurofibromatosis: A pilot randomized controlled trial
Lester, E., DiStefano, S., Mace, R., Macklin, E., Plotkin, S., & Vranceanu, A.-M. (2020) · General Hospital Psychiatry · doi:10.1016/j.genhosppsych.2019.12.001 · Cited by 22 · see citing works
Loss to follow-up in a randomized controlled trial study for pediatric weight management (EPOC)
Warschburger, P., & Kröller, K. (2016) · BMC Pediatrics · doi:10.1186/s12887-016-0727-2 · Cited by 24 · see citing works
“Reviewing the attrition rates in randomized controlled studies of chronic illness in childhood, Karlson and Rapoff [2] reported that on average, 37 % (range 0–75 %) refused to take part in the study at the beginning, 4 % (range 0–35 %) provided no baseline data, 20 % (range 0–54 %) no initial follow-up data, and 32 %…”
BackgroundInfluential
Mifamurtide for High-Grade, Resectable, Nonmetastatic Osteosarcoma Following Surgical Resection: A Cost-Effectiveness Analysis
Johal, S., Ralston, S., & Knight, C. (2013) · Value in Health · doi:10.1016/j.jval.2013.08.2294 · Cited by 23 · see citing works
“This is not unusual for pediatric experimental research, in which age is one of the most commonly cited predictors of early study dropout [18], and especially when considering the extension of the already significant standard treatment regimen with the introduction of mifamurtide.”
Background
Language and reading comprehension in middle childhood predicts emotional and behaviour difficulties in adolescence for those with permanent childhood hearing loss
Stevenson, J., Pimperton, H., Kreppner, J., Worsfold, S., Terlektsi, E., Mahon, M., & Kennedy, C. (2017) · Journal of Child Psychology and Psychiatry · doi:10.1111/jcpp.12803 · Cited by 23 · see citing works
“This degree of attrition is relatively low for follow-up studies of longterm paediatric conditions (Karlson & Rapoff, 2009).”
Background
Child-related characteristics predicting subsequent health-related quality of life in 8- to 14-year-old children with and without cerebellar tumors: a prospective longitudinal study
Bull, K., Liossi, C., Culliford, D. J., Peacock, J. L., Kennedy, C., & on behalf of the Children's Cancer and Leukaemia Group (CCLG) (2014) · Neuro-Oncology Practice · doi:10.1093/nop/npu016 · Cited by 22 · see citing works
“Female 16 (43) 23 (66) 19 (50) Mother respondent 35 (95) 32 (91) 33 (87) Single-parent family 8 (22) 3 (9) 5 (13) Only child 9 (25) 3 (9) 4 (11) Parent education None 1 (3) 2 (6) 2 (5) School 14 (38) 5 (14) 7 (18) College 15 (42) 18 (51) 21 (55) University 6 (16) 10 (29) 8 (21) Unknown 1 (3) 0 0 SES prediagnosis Manag…”
Quality of life among parents seeking treatment for their child’s functional abdominal pain
Calvano, C., & Warschburger, P. (2018) · Quality of Life Research · doi:10.1007/s11136-018-1916-2 · Cited by 22 · see citing works
Dropout from Computer-based Interventions for Children and Adolescents with Chronic Health Conditions
Dunn, T. L., Casey, L. M., Sheffield, J. K., Newcombe, P. A., & Chang, A. B. (2011) · Journal of Health Psychology · doi:10.1177/1359105311415558 · Cited by 22 · see citing works
“…conditions found 4 per cent of participants dropped out after consent had been given but before treatment commenced, 6 per cent dropped out during treatment, 20 per cent of participants dropped out before follow-up and 32 per cent did not complete extended follow-up (Karlson and Rapoff, 2009).”
Background
A person‐centred, theory‐based, behavioural intervention programme for improved oral hygiene in adolescents: A randomized clinical field study
Dimenäs, S. L., Jönsson, B., Andersson, J. S., Lundgren, J., Petzold, M., Abrahamsson, I., & Abrahamsson, K. H. (2022) · Journal Of Clinical Periodontology · doi:10.1111/jcpe.13601 · Cited by 19 · see citing works
“Drop-out rates of about 20%–22% were reported in other studies on health behavioural interventions including adolescents with a 6-month follow-up (Karlson & Rapoff, 2009; Džiaugytė et al., 2017).”
Background
Resilience and Diabetes Distress at 3 Months Following Diagnosis Predict A1C Trajectories in Youth With Type 1 Diabetes: An Argument for Early Intervention
Scott, S., O’Donnell, M., Manczak, E. M., Fladeboe, K., ELLISOR, B. M., Rosenberg, A. R., Malik, F. S., & Yi‐Frazier, J. P. (2022) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsac046 · Cited by 20 · see citing works
Recruiting and retaining parents in behavioral intervention trials: Strategies to consider
Shneider, C. E., Hilliard, M. E., Monaghan, M. C., Tully, C., Wang, C. H., Sinisterra, M., Jones, J., Levy, W. L., & Streisand, R. M. (2021) · Contemporary Clinical Trials · doi:10.1016/j.cct.2021.106502 · Cited by 19 · see citing works
A Digital Health Program Targeting Physical Activity Among Adolescents With Overweight or Obesity: Open Trial
Cummings, C., Crochiere, R. J., Lansing, A. H., Patel, R., & Stanger, C. (2022) · JMIR Pediatrics and Parenting · doi:10.2196/32420 · Cited by 19 · see citing works
“Intensive, multi-component behavior modification studies for health behavior change have faced challenges in achieving high adolescent adherence and have struggled to maintain adolescent motivation throughout the program [9,35].”
Background
Evaluation of an approach–avoidance training intervention for children and adolescents with obesity: A randomized placebo‐controlled prospective trial
Warschburger, P., Gmeiner, M. S., Morawietz, M., & Rinck, M. (2018) · European Eating Disorders Review · doi:10.1002/erv.2607 · Cited by 19 · see citing works
Small Interventions for Big Change: Brief Strategies for Distress and Self-Management Amongst Youth with Type 1 Diabetes
Barry, S., Wagner, D. V., & Riley, A. R. (2020) · Current Diabetes Reports · doi:10.1007/s11892-020-1290-7 · Cited by 19 · see citing works
A prospective analysis of the long-term impact of the COVID-19 pandemic on well-being and health care among children with a chronic condition and their families: a study protocol of the KICK-COVID study
Warschburger, P., Kamrath, C., Lanzinger, S., Sengler, C., Wiegand, S., Göldel, J. M., Blüher, S., Holl, R. W., & Minden, K. (2023) · BMC Pediatrics · doi:10.1186/s12887-023-03912-7 · Cited by 17 · see citing works
“Since drop-out rates vary between 0 and 54% [96] we aim to include between 300 and 400 parents and about 100 adolescents.”
Background
Factors Influencing Attrition in a Multisite, Randomized, Clinical Trial Following Traumatic Brain Injury in Adolescence
Blaha, R. Z., Arnett, A. B., Kirkwood, M. W., Taylor, H. G., Stancin, T., Brown, T. M., & Wade, S. L. (2014) · Journal of Head Trauma Rehabilitation · doi:10.1097/htr.0000000000000059 · Cited by 18 · see citing works
CBT for Pediatric Migraine: A Qualitative Study of Patient and Parent Experience
Diest, A. M. K. V., Ernst, M. M., Vaughn, L. M., Slater, S. K., & Powers, S. W. (2018) · Headache The Journal of Head and Face Pain · doi:10.1111/head.13285 · Cited by 17 · see citing works
“Being “too busy” has been cited in other pediatric psychology literature as a reason of declining therapy.(9) Thus, minimizing burden by creating a streamlined treatment for pediatric migraine will likely increase accessibility for pediatric migraine sufferers.”
Background
Impact of motivational interviewing on engagement in a parent‐exclusive paediatric obesity intervention: randomized controlled trial of NOURISH+MI
Bean, M. K., Thornton, L. M., Jeffers, A. J., Gow, R. W., & Mazzeo, S. E. (2018) · Pediatric Obesity · doi:10.1111/ijpo.12484 · Cited by 17 · see citing works
“incentives for completing assessments and implementing culturally appropriate treatments are recommended (4,5).”
Background
Pediatric Weight Management Through mHealth Compared to Face-to-Face Care: Cost Analysis of a Randomized Control Trial
Tully, L., Sørensen, J. R., & O’Malley, G. (2021) · JMIR mhealth and uhealth · doi:10.2196/31621 · Cited by 16 · see citing works
“There was a 23% attrition rate for the trial (25/109); however, this is broadly in line with pediatric RCTs [25] and weight management interventions in general [16], where dropouts are common owing to the intensive nature of these interventions.”
Result
Benefits and Barriers to Engaging in a Family Physical Activity Intervention: A Qualitative Analysis of Exit Interviews
Ross, A. B., Quinlan, A., Blanchard, C. M., Naylor, P., Warburton, D. E. R., & Rhodes, R. E. (2022) · Journal of Child and Family Studies · doi:10.1007/s10826-022-02466-z · Cited by 16 · see citing works
Factors Associated with Recruitment and Retention in Randomized Controlled Trials of Behavioral Interventions for Patients with Pediatric Type 1 Diabetes
Herbert, L., Gillespie, C. W., Monaghan, M. C., Holmes, C. S., & Streisand, R. M. (2015) · Journal of Clinical Psychology in Medical Settings · doi:10.1007/s10880-015-9448-1 · Cited by 16 · see citing works
“…recruitment and retention of a diverse sample of participants, many of which have previously been discussed in the literature (Boys et al., 2003; Coday et al., 2005; Germann et al., 2006; Gul & Ali, 2010; Karlson & Rapoff, 2009; Marcellus, 2004; Patel et al., 2003; Probstfield & Frye, 2011).”
Influential
Recruitment and retention of the Hardest-to-Reach families in community-based asthma interventions
Goldman, H., Fagnano, M., Perry, T. T., Weisman, A. R., Drobnica, A., & Halterman, J. S. (2018) · Clinical Trials · doi:10.1177/1740774518793598 · Cited by 14 · see citing works
Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study
van Driessche, A., Beernaert, K., Deliëns, L., Kars, M. C., Lyon, M. E., Barrera, M. E., Dussel, V., Bidstrup, P. E., Rosenberg, A. R., Akard, T. F., et al. (2023) · European Journal of Pediatrics · doi:10.1007/s00431-023-05139-1 · Cited by 13 · see citing works
“Even when subjects do enroll, retaining them on these studies can be difficult due to the inherent burdens of study-participation; in a review of 40 clinical RCTs for parents and youth living with chronic illness, reported attrition rates were as high as 54% [5].”
Background
Participation and Attrition in a Coping Skills Intervention for Adolescent Girls with Inflammatory Bowel Disease
Reed, B., McCormick, M. L., Lewis, J. D., & Blount, R. L. (2011) · Journal of Clinical Psychology in Medical Settings · doi:10.1007/s10880-011-9269-9 · Cited by 13 · see citing works
Potentially missing data are considerably more frequent than definitely missing data: a methodological survey of 638 randomized controlled trials
Kahale, L. A., Diab, B., Khamis, A. M., Chang, Y., Lopes, L. C., Agarwal, A., Li, L., Mustafa, R. A., Koujanian, S., Waziry, R., et al. (2018) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2018.10.001 · Cited by 13 · see citing works
Sleep intervention for children with asthma and their parents (SKIP Study): a novel web-based shared management pilot study
Sonney, J., Thompson, H. J., Landis, C. A., Pike, K. C., Chen, M. L., Garrison, M. M., & Ward, T. M. (2020) · Journal of Clinical Sleep Medicine · doi:10.5664/jcsm.8374 · Cited by 12 · see citing works
“12,19,22,23,34,35 Goals related to sleep quantity were based on the National Sleep Foundation ’ s age-speci ﬁ c sleep duration recommendations.”
A proposed standardized approach to studying attrition in pediatric weight management
Spence, N. D., Skelton, J. A., & Ball, G. D. C. (2019) · Obesity Research & Clinical Practice · doi:10.1016/j.orcp.2019.11.004 · Cited by 12 · see citing works
Developing an online, searchable database to systematically map and organise current literature on retention research (ORRCA2)
Kearney, A., Ashford, P., Butlin, L., Conway, T., Cragg, W. J., Devane, D., Gardner, H., Gaunt, D., Gillies, K., Harman, N., et al. (2021) · Clinical Trials · doi:10.1177/17407745211053803 · Cited by 12 · see citing works
Health, Wellbeing and Empowerment E-workshops for Mothers of Children with Disabilities: A Non-randomised Comparison Study
Bourke‐Taylor, H. M., Leo, M., & Tirlea, L. (2024) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-024-06287-5 · Cited by 11 · see citing works
“%) for extended follow-up (Karlson & Rapoff, 2008).”
Participant Experiences in the Environmental Determinants of Diabetes in the Young Study: Common Reasons for Withdrawing
Lernmark, B., Lynch, K. F., Baxter, J., Roth, R., Simell, T. T., SMITH, L. B., Swartling, U., Johnson, S. B., & TEDDY Study Group (2015) · Journal of Diabetes Research · doi:10.1155/2016/2720650 · Cited by 11 · see citing works
“In fact, only 55% percent of pediatric trials report refusal or withdrawal reasons based on a recent literature review [2].”
An Update on the Status of Sponsored Research in Counseling Psychology
Martens, M. P., Herman, K. C., Takamatsu, S. K., Schmidt, L., Herring, T. E., Labuschagne, Z., & McAfee, N. W. (2016) · The Counseling Psychologist · doi:10.1177/0011000015626271 · Cited by 11 · see citing works
“Suggestions for improving attrition rates, such as incentives, staff training, and tracking procedures, all require time, money, and effort (Karlson & Rapoff, 2008).”
Background
Targeting Coping to Improve Surgical Outcomes in Pediatric Patients With Median Arcuate Ligament Syndrome: Feasibility Study
Stiles‐Shields, C., Osos, S., Heilbrun, A., Feldman, E. C. H., Mak, G. Z., Skelly, C. L., & Drossos, T. (2021) · Frontiers in Psychology · doi:10.3389/fpsyg.2021.695435 · Cited by 12 · see citing works
Recruitment and Retention of Participants for an International Type 1 Diabetes Prevention Trial: A Coordinators’ Perspective
Franciscus, M., Nucci, A., Bradley, B. J., Suomalainen, H. A., Greenberg, E., Laforte, D., Kleemola, P., Hyytinen, M., Salonen, M., Martin, M.-J., et al. (2013) · Clinical Trials · doi:10.1177/1740774513510070 · Cited by 14 · see citing works
“To date, the TRIGR study has experienced a lower rate of attrition (14%) than that reported by Karlson and Rapoff [9] (37%) in their review of attrition rates in randomized interventions in children with chronic conditions.”
BackgroundMethodInfluential
Policy solutions to recruiting and retaining minority children in research
Raphael, J. L., Lion, K. C., & Bearer, C. F. (2017) · Pediatric Research · doi:10.1038/pr.2017.119 · Cited by 11 · see citing works
Demographic and Operational Factors Predicting Study Completion in a Multisite Case-Control Study of Preschool Children
Bradley, C., Browne, E. N., Alexander, A. A., Collins, J., Dahm, J. L., DiGuiseppi, C. G., Levy, S. E., Moody, E. J., Schieve, L. A., Windham, G. C., et al. (2017) · American Journal of Epidemiology · doi:10.1093/aje/kwx262 · Cited by 11 · see citing works
Measurement Burst Designs to Improve Precision in Peer Research
Persram, R. J., Panarello, B., Castellanos, M., Astrologo, L., & Bukowski, W. M. (2021) · Cambridge University Press eBooks · doi:10.1017/9781108986038 · Cited by 10 · see citing works
Clinical Trials in Pediatric Autosomal Dominant Polycystic Kidney Disease
Cadnapaphornchai, M. A. (2017) · Frontiers in Pediatrics · doi:10.3389/fped.2017.00053 · Cited by 11 · see citing works
Resilience strengthening in youth with a chronic medical condition: a randomized controlled feasibility trial of a combined app and coaching program
Bischops, A., Sieper, L., Dukart, J., Schaal, N. K., Reinauer, C., Oommen, P. T., Tomoiagă, C. T., David, D., Mayatepek, E., & Meißner, T. (2024) · European Child & Adolescent Psychiatry · doi:10.1007/s00787-024-02395-w · Cited by 10 · see citing works
“In addition, studies often encounter major recruitment difficulties [18, 19].”
Influential
Improving social cognition following theta burst stimulation over the right inferior frontal gyrus in autism spectrum: an 8-week double-blind sham-controlled trial
Ni, H., Chen, Y., Hsieh, M., Wu, C., Chen, R.-S., Juan, C.-H., Li, C., Gau, S. S., & Lin, H. (2024) · Psychological Medicine · doi:10.1017/s0033291724001387 · Cited by 10 · see citing works
“The mean attrition rate in RCTs for chronic pediatric mental health conditions is suggested to be 20% (Karlson & Rapoff, 2009).”
Background
Social determinants of participant recruitment and retention in a prospective cohort study of pediatric mild traumatic brain injury
Wells, J. M., Galarneau, J.-M. F., Minich, N. M., Cohen, D. M., Clinton, K. N., Taylor, H. G., Bigler, E. D., Bacevice, A. M., Mihalov, L. K., Bangert, B. A., et al. (2022) · Frontiers in Neurology · doi:10.3389/fneur.2022.961024 · Cited by 10 · see citing works
“Both homogenous recruitment practices and attrition become a major threat to internal, external, and statistical validity of intervention studies (4, 5).”
Background
Transdiagnostic Sleep and Circadian Intervention in Youth: Long-Term Follow-Up of a Randomized Controlled Trial
Susman, E. S., Patino, E. O., Tiab, S. S., Dong, L., Gumport, N. B., Sarfan, L. D., Hinshaw, S. P., & Harvey, A. G. (2024) · Journal of the American Academy of Child & Adolescent Psychiatry · doi:10.1016/j.jaac.2024.05.001 · Cited by 10 · see citing works
“50 This level of attrition (39”
Motivational interviewing with parents of overweight children: Study design and methods for the NOURISH+MI study
Bean, M. K., Jeffers, A. J., Tully, C., Thornton, L. M., & Mazzeo, S. E. (2014) · Contemporary Clinical Trials · doi:10.1016/j.cct.2014.02.001 · Cited by 10 · see citing works
“Low treatment adherence and high attrition, however, are frequently encountered, particularly when targeting underserved populations, reducing the effectiveness of these interventions [8–10].”
Background
Intervention Completion Rates among African Americans in a Randomized Effectiveness Trial for Diet and Physical Activity Changes
Halbert, C. H., Bellamy, S. L., Briggs, V., Bowman, M. A., Delmoor, E., Johnson, J. C., Kumanyika, S., Melvin, C. L., Purnell, J., Rogers, R., et al. (2014) · Cancer Epidemiology Biomarkers & Prevention · doi:10.1158/1055-9965.epi-13-1064 · Cited by 10 · see citing works
“The first element of retention is based on the number of participants who received or completed the intervention relative to the total number who were allocated to study arms; this rate is relevant for determining if the intervention’s efficacy is likely to be underestimated (8-10).”
Are disadvantaged children more likely to be excluded from analysis when applying global positioning systems inclusion criteria?
Mavoa, S., Lamb, K. E., O’Sullivan, D., Witten, K., & Smith, M. (2018) · BMC Research Notes · doi:10.1186/s13104-018-3681-2 · Cited by 10 · see citing works
Utilizing Community Engagement Studios to inform patient experience in a multicenter randomized control trial
Nielson, C., Huang, Y., Kull, C. A., & Park, A. H. (2020) · International Journal of Pediatric Otorhinolaryngology · doi:10.1016/j.ijporl.2020.110007 · Cited by 10 · see citing works
Meta-Analyses Proved Inconsistent in How Missing Data Were Handled Across Their Included Primary Trials: A Methodological Survey
Kahale, L. A., Khamis, A. M., Diab, B., Chang, Y., Lopes, L. C., Agarwal, A., Li, L., Mustafa, R. A., Koujanian, S., Waziry, R., et al. (2020) · Clinical Epidemiology · doi:10.2147/clep.s242080 · Cited by 9 · see citing works
Cognitive Behavioral Therapy for Treatment of Pediatric Chronic Migraine
Connelly, M. A. (2013) · JAMA · doi:10.1001/jama.2013.282534 · Cited by 9 · see citing works
Parents’ views of psychological research with children: Barriers, benefits, personality, and psychopathology
Jungmann, S. M., Grebinyk, G., & Witthöft, M. (2023) · PLoS ONE · doi:10.1371/journal.pone.0287339 · Cited by 8 · see citing works
“, chronically ill children and adolescents, foster children, migration background, adolescent risk behavior, or drug use; [1, 6, 19, 21, 34, 35, 37, 38]) or on the willingness to participate in intervention or prevention programs [10, 13, 16– 18].”
Background
The Efficacy of a Culturally-Adapted Group-based Parent Coaching Program for Autistic Children in China via Telehealth: A Randomized Controlled Trial
Qu, L., Colombi, C., Chen, W., Miller, A. L., Miller, H. L., & Ulrich, D. A. (2024) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-024-06543-8 · Cited by 11 · see citing works
“With an expected attrition rate of 20% (Karlson & Rapoff, 2008), a total sample of 36 families, with at least 18 participants per group were randomized in our study.”

Rapoff, “Attrition in randomized controlled trials for pediatric chronic conditions
Karlson, C., & Rapoff, M. A. (2009)
Self-citation
Premature Discontinuation of Pediatric Randomized Controlled Trials: A Retrospective Cohort Study.
Schandelmaier, S., Tomonaga, Y., Bassler, D., Meerpohl, J. J., von Elm, E. B., You, J. J., Blümle, A., Lamontagne, F., Saccilotto, R. T., Amstutz, A., et al. (2017) · Open Access CRIS of the University of Bern · doi:10.7892/boris.109358
Attrition from pediatric trauma‐focused cognitive behavioral therapy: A meta‐analysis
Wamser‐Nanney, R. A., & Walker, H. E. (2022) · Journal of Traumatic Stress · doi:10.1002/jts.22890 · Cited by 19 · see citing works
Recruitment and retention strategies and the examination of attrition bias in a randomised controlled trial in children’s centres serving families in disadvantaged areas of England
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Additional file 1 of Participant retention in paediatric randomised controlled trials published in six major journals 2015–2019: systematic review and meta-analysis
Gaunt, D., Brooks, C. P., Pedder, H., Crawley, E. M., Horwood, J., & Metcalfe, C. (2023) · Figshare · doi:10.6084/m9.figshare.23519960

Authors: Karlson, C. W., & Rapoff, M. A.
Affiliations: University of Kansas (US)
ORCID: Karlson, C. W.
Venue: Journal of Pediatric Psychology
Publisher: Oxford University Press (OUP)
Published: 2008-12-08
Volume: 34
Issue: 7
Pages: 782-793
ISSN: 0146-8693 (ISSN-L)
1465-735X
DOI: 10.1093/jpepsy/jsn122
OpenAlex: W2117776447
Cited by: 162
References: 72
Citations by year: 2026: 5 · 2025: 5 · 2024: 10 · 2023: 15 · 2022: 9 · 2021: 7 · 2020: 10 · 2019: 10 · 2018: 15 · 2017: 10 · 2016: 10 · 2015: 9 · 2014: 15 · 2013: 10 · 2012: 10
FWCI: 4.53
Type: journal article
Language: en
Open access: closed
Locations: Journal of Pediatric Psychology (publishedVersion)
PubMed (publishedVersion)
Topics: Social Sciences › Decision Sciences › Statistics, Probability and Uncertainty › Meta-analysis and systematic reviews
Physical Sciences › Mathematics › Statistics and Probability › Statistical Methods in Clinical Trials
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Keywords: attrition, randomized controlled trials, pediatric chronic conditions, cognitive-behavioral intervention, children, attrition rates, CONSORT flow diagram, reporting guidelines, recruitment strategies, incentives, asthma, cystic fibrosis, sickle cell disease, diabetes mellitus, obesity, arthritis, childhood cancer
MeSH terms: Analysis of Variance, Child, Chronic Disease, Follow-Up Studies, Humans, Pediatrics, Cognitive Behavioral Therapy, Randomized Controlled Trials as Topic, Patient Selection, Research Subjects

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