Stakeholder-Engaged Measure Development for Pediatric Obstructive Sleep-Disordered Breathing

Links, Anne R.; Tunkel, David E.; Boss, Emily F.

doi:10.1001/jamaoto.2016.2681

Cited by 10 publications

(11 citation statements)

References 55 publications

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“…While OSA is increasingly relevant in pediatric epidemiology due to the rise in obesity, parental knowledge of the condition and consequent treatment options is imperative. A recent 2017 study regarding the development of a questionnaire informing parents of this treatment was designed by Links et al (82). The tool aims to alleviate parental conflict around the choice for or against this treatment in children and is a first in its approach as a questionnaire focusing on medical treatment decision making.…”

Section: Discussionmentioning

confidence: 99%

“…The tool aims to alleviate parental conflict around the choice for or against this treatment in children and is a first in its approach as a questionnaire focusing on medical treatment decision making. Like the objectives of OSA-5, this tool is notable in that it aims to "improve the quality and impact of patient and family decisions about OSA diagnosis and treatment" (82). As part of the personalized/precision medicine era, the CAS-15 (17) and PROMIS-papers pop out.…”

Section: Discussionmentioning

confidence: 99%

“…Across all 144 studies evaluated, it was evident that sleep tools were predominantly developed and evaluated for a combination of children and adolescents between the ages of 6-18 years (27.1%), followed closely by tools for adolescents 13-18 years at 22.2% and children 6-12 years alone at 16.7%. Only 10 studies covered the 0-18 years age range, and one did not define its range (82). Meanwhile, only 5.6% of all the studies assessed tools for preschool-aged children (2-5 years) alone and 1.4% for infants (0-23 months) alone.…”

Section: Study Characteristicsmentioning

confidence: 99%

See 2 more Smart Citations

Pediatric Sleep Tools: An Updated Literature Review

Sen

Spruyt

2020

Front. Psychiatry

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Since a thorough review in 2011 by Spruyt, into the integral pitfalls of pediatric questionnaires in sleep, sleep researchers worldwide have further evaluated many existing tools. This systematic review aims to comprehensively evaluate and summarize the tools currently in circulation and provide recommendations for potential evolving avenues of pediatric sleep interest. 144 "tool"-studies (70 tools) have been published aiming at investigating sleep in primarily 6-18 years old per parental report. Although 27 new tools were discovered, most of the studies translated or evaluated the psychometric properties of existing tools. Some form of normative values has been established in 18 studies. More than half of the tools queried general sleep problems. Extra efforts in tool development are still needed for tools that assess children outside the 6-to-12-year-old age range, as well as for tools examining sleep-related aspects beyond sleep problems/disorders. Especially assessing the validity of tools has been pursued vis-à-vis fulfillment of psychometric criteria. While the Spruyt et al. review provided a rigorous step-by-step guide into the development and validation of such tools, a pattern of steps continue to be overlooked. As these instruments are potentially valuable in assisting in the development of a clinical diagnosis into pediatric sleep pathologies, it is required that while they are primary subjective measures, they behave as objective measures. More tools for specific populations (e.g., in terms of ages, developmental disabilities, and sleep pathologies) are still needed.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Study Characteristicsmentioning

confidence: 99%

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Pediatric Sleep Tools: An Updated Literature Review

Sen

Spruyt

2020

Front. Psychiatry

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“…Other research that evaluates parent-centered outcomes in pediatric tonsillectomy focus on outcomes such as disease-specific and health-related quality of life, parental knowledge about otolaryngologic disease and surgery, parent satisfaction with care, and parental decision conflict for surgery 5,31–33 . Our study complements these previous studies by looking at parental experiences outside of the clinical context.…”

Section: Discussionmentioning

confidence: 99%

Evaluation of Parental Perspectives and Concerns About Pediatric Tonsillectomy in Social Media

Hairston

Links

Harris

et al. 2019

JAMA Otolaryngol Head Neck Surg

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Importance: Tonsillectomy is common in children, but little is known about parental preferences and values concerning this surgery. Social media offers a novel opportunity to evaluate parent understanding and experience of care. Objective: We systematically evaluate posts in a well-known social media site to identify parent perspectives about tonsillectomy in children that may not be apparent in a routine clinical encounter. Design: In this mixed methods analysis, we searched Twitter© for posts (“tweets”) from 2008-2017 written by parents about their child’s tonsillectomy. We applied modified grounded theory to develop a coding taxonomy to classify these tweets. Two reviewers assessed tweets for thematic synthesis and classification. Tweets were quantified, and descriptive statistics were obtained for each theme. Setting: The posts on the social media site www.twitter.com. Participants: A sample of over 700 adult American parents of children who received or will receive a tonsillectomy and posted on Twitter. Main Outcomes and Measures: Themes of parent experiences and perspectives about their child’s tonsillectomy. Results: Of 5801 tweets retrieved, 782 satisfied our inclusion criteria. Tweets fell into overarching themes of 1. procedural concerns (n=549, 70.2%) and 2. attitudes/experiences (n=498, 63.7%). Common tweets related to procedural concerns regarded surgical indication (“sick for months”; n=55,7.0%), recovery [n=227, 29.0%; including child’s attitude (“she is nervous”; n=89, 11.4%) nutrition (“won’t eat”; n=89, 11.4%), and parental experience (“harder on the parents than the kid”;(n=87, 11.1%))]. Common tweets regarding attitudes/experiences included tenor of overall care (“yay for tonsil surgery!”; n=155, 19.8%), and fears/apprehensions (“frankly, I’m terrified”; n=178, 22.8%). Conclusions and Relevance: This analysis provides insight into parent perspectives on pediatric tonsillectomy. Parents commonly tweet concerns about surgery that may not be recognized in routine clinician-parent dialogue. Findings may be used to guide clinicians in educating and counseling parents, and further engaging parents and children in shared decision-making for tonsillectomy.

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“…To assess parental knowledge about OSDB and treatment options, parents were asked to complete the OSDB and Adenotonsillectomy Knowledge Scale after the consultation . This 39-item measure was developed based on the Ottawa Hospital decision support toolkit and evaluates parental knowledge about symptoms and treatment options of OSDB and the risks, benefits, and anesthesia concerns related to adenotonsillectomy; validity and reliability of this measure have been previously established in our research .…”

Section: Methodsmentioning

confidence: 99%

Assessment of Parental Choice Predisposition for Tonsillectomy in Children

Leu

Links

Ryan

et al. 2021

JAMA Otolaryngol Head Neck Surg

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The decision to proceed with tonsillectomy to treat pediatric obstructive sleep-disordered breathing (OSDB) often falls on individual families. Despite emphasis on shared decision-making between parents and surgeons about tonsillectomy for OSDB, the extent to which parents have already decided about surgery prior to the child's consultation is not known.OBJECTIVE To identify predictors of parent choice predisposition for surgical treatment of OSDB with tonsillectomy and describe its association with parent-clinician communication.DESIGN, SETTING, AND PARTICIPANTS Observational cohort study conducted at 3 outpatient clinical sites (urban-based outpatient center, suburban off-site outpatient center, and community-based medical center) associated with a large academic center. A total of 149 parents of children undergoing their initial otolaryngology consultation for OSDB were identified through clinic scheduling records and deemed eligible for participation in this study. Of the 149 parents, a volunteer sample of 64 parents (42.9%) agreed to participate and have their consultation audiorecorded. Of these 64 participants, 12 parents were excluded because their child had previously been evaluated for OSDB by a specialist. MAIN OUTCOMES AND MEASURESThe primary outcomes and measures were treatment choice predisposition scale (a measure of the strength of a patient's treatment decision prior to entering a medical consultation), parent communication behaviors coded in consultation audiorecordings (substantive questions asked, introduced medical jargon, expression of treatment preference, and scores on the OSDB and Adenotonsillectomy Knowledge Scale for parents).RESULTS A total of 52 parent participants were included in the final analysis. Most parent participants were female (n = 48; 92%); 50% (n = 26) of parents were non-Hispanic White, 37% (n = 19) were Black, 10% (n = 5) were Hispanic/Latino, and 4% (n = 2) self-reported race/ethnicity as "Other." Mean (range) choice predisposition was 6.84 (2-10), with 22 parents (42%) more predisposed to choose tonsillectomy. Parents more predisposed to choose tonsillectomy used more medical jargon during the consultation (odds ratio [OR], 3.95; 95% CI, 1.16-15.15) and were less likely to ask questions (OR, 0.22; 95% CI, 0.05-0.87). Parental predictors of greater predisposition toward choosing surgery were White race (OR, 7.31; 95% CI,) and prior evaluation by a pediatrician for OSDB (OR, 6.10; 95% CI,. CONCLUSIONS AND RELEVANCEIn this cohort study of parents of children with OSDB, many parents were predisposed to choose treatment with tonsillectomy prior to initial surgical consultation, which may lessen engagement and influence 2-way communication. In this cohort, greater predisposition for tonsillectomy was observed in non-Hispanic White parents and parents of patients who had been previously evaluated by a pediatrician for OSDB. Understanding parent choice predisposition for surgery may promote improved communication and parental engagement during surgical consultations. It may ...

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Stakeholder-Engaged Measure Development for Pediatric Obstructive Sleep-Disordered Breathing

Abstract: The oSDB and AT Knowledge Scale for Parents is psychometrically sound for use in the assessment of parental knowledge.

Cited by 10 publications

References 55 publications

Pediatric Sleep Tools: An Updated Literature Review

Pediatric Sleep Tools: An Updated Literature Review

Evaluation of Parental Perspectives and Concerns About Pediatric Tonsillectomy in Social Media

Assessment of Parental Choice Predisposition for Tonsillectomy in Children

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