Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Mar 1;21(3):609-616.
doi: 10.11124/JBIES-22-00105.

Patient-reported outcome instruments for assessing the involvement of children and adolescents with type 1 diabetes in their treatment: a scoping review protocol

Rikke Bjerre Lassen  1 , Caroline Bruun Abild  1   2 , Kurt Kristensen  1   2 , Lene Juel Kristensen  1 , Annesofie Lunde Jensen  1   2
Affiliations

Patient-reported outcome instruments for assessing the involvement of children and adolescents with type 1 diabetes in their treatment: a scoping review protocol

Rikke Bjerre Lassen et al. JBI Evid Synth. .

Abstract

Objective: The objective of this review is to identify available patient-reported outcome instruments used to assess the involvement of children and adolescents with type 1 diabetes in their treatment. Specifically, this review will examine the content, structure, and application of these instruments.

Introduction: It is considered meaningful to involve children and adolescents living with a chronic health condition, such as type 1 diabetes, in their own treatment. Despite a growing interest in patient involvement within pediatric health care, including the use of patient-reported outcomes, only a few patient-reported outcome instruments have been developed and are used to evaluate the experiences of children and adolescents with type 1 diabetes of being involved in their own treatment.

Inclusion criteria: This scoping review will examine patient-reported outcome instruments used to assess the experiences of children and adolescents (11 to 18 years of age) with type 1 diabetes of being involved in their own care. Patient-reported outcome instruments measuring parents' or clinicians' experiences of involvement will be excluded.

Methods: The proposed review will follow JBI guidelines and all stages will involve 2 or more reviewers. PubMed, Embase, CINAHL, PsycINFO, JSTOR, and MedNar will be searched without limitations on the year or language of publication. Literature that is not written in English will be translated. Data extraction, charting, and analysis will be guided by a template developed for this review that focuses on the content, structure, and application of the patient-reported outcome instruments. Any modifications to the extraction template will be detailed in the review, and data will be presented in a descriptive format.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflict of interest.

References

    1. Mayer-Davis EJ, Kahkoska AR, Jefferies C, Dabelea D, Balde N, Gong CX, et al. ISPAD clinical practice consensus guidelines 2018: definition, epidemiology, and classification of diabetes in children and adolescents. Pediatr Diabetes 2018;27(27):7–19.
    1. Overgaard M, Lundby-Christensen L, Grabowski D. Disruption, worries and autonomy in the everyday lives of adolescents with type 1 diabetes and their family members: a qualitative study of intrafamilial challenges. J Clin Nurs 2020;29(23–24):4633–4644.
    1. Karisalmi N, Stenhammar H, Kaipio J. What constitutes the patient experience of children? Findings from the photo elicitation and the video diary study. Patient Exp J 2018;5(2):54–68.
    1. Deshpande PR, Rajan S, Sudeepthi BL, Nazir CPA. Patient-reported outcomes: a new era in clinical research. Perspect Clin Res 2011;2(4):137–144.
    1. McCabe MA. Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 1996;21(4):505–516.

LinkOut - more resources