Involving children and adolescents with type 1 diabetes in health care: a qualitative study of the use of patient-reported outcomes.

BACKGROUND: Within pediatric health care services, Patient-reported Outcomes (PROs) regarding the patient's health status are mainly used for research purposes in a chronic care setting. However, PROs are also applied in clinical settings in the routine care of children and adolescents with chronic health conditions. PROs have the potential to involve patients because they 'place the patient at the center' of his or her treatment. The investigation of how PROs are used in the treatment of children and adolescents and how this use can influence the involvement of these patients is still limited. The aim of this study was to investigate how children and adolescents with type 1 diabetes (T1D) experience the use of PROs in their treatment with a focus on the experience of involvement. RESULTS: Employing Interpretive Description, 20 semi-structured interviews were conducted with children and adolescents with T1D. The analysis revealed four themes related to the use of PROs: Making room for conversation, Applying PROs under the right circumstances, Questionnaire structure and content, and Becoming partners in health care. CONCLUSIONS: The results clarify that, to some extent, PROs fulfill the potential they promise, including patient-centered communication, detection of unrecognized problems, a strengthened patient-clinician (and parent-clinician) partnership, and increased patient self-reflection. However, adjustments and improvements are needed if the potential of PROs is to be fully achieved in the treatment of children and adolescents.

Patients' perspectives on screening for disordered eating among adolescents with type 1 diabetes.

PURPOSE: People with type 1 diabetes have an increased risk of disordered eating (DE) and eating disorders (ED). Screening is recommended however little is known about patients' perspectives on screening questionnaires. This paper reports qualitative analyses of patients' perspectives on the questionnaire Diabetes Eating Problem Survey Revised (DEPS-R), including acceptability, attitudes, and cognitive understanding. RESEARCH DESIGN AND METHODS: 15 adolescents with type 1 diabetes between 11 and 18 years, were interviewed. A semi-structured format and a qualitative Interpretive Descriptive (ID) methodology was chosen. RESULTS: The analyses identified four themes: (1) The Questionnaire, (2) Reframing Diabetes Visits, (3) This is (not) for me, and (4) Out in the Open. The DEPS-R was completed with-in 5-10 min. with no technical difficulties. The questionnaire altered the diabetes visit for some, creating a new dialog, and time for self-reflection. Adolescents appreciated the direct approach in the questionnaire, and showed willingness to complete the questionnaire, when presented to them by a health care professional (HCP). One item in the DEPS-R proved difficult to understand for some participants. CONCLUSION: The study highlights DEPS-R as a clinically relevant screening questionnaire. Completing DEPS-R prior to a consultation opens the door to a consultation that invites the adolescent to address matters of eating behavior. Our findings suggest that systematic screening of DE/ED using the DEPS-R is both accepted and welcomed by adolescents with type 1 diabetes. Future research should focus on a potential update of selected items in DEPS-R. LEVEL OF EVIDENCE: V - qualitative study.

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

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.