Assessing Adolescent Involvement in Type 1 Diabetes Treatment: A Scoping Review of Person‐Reported Outcome Instruments

ABSTRACT

Aim

The aim of this study was to identify and map the content, structure, and application of person‐reported outcome instruments used to assess the experience of treatment involvement among adolescents with type 1 diabetes.

Methods

Studies were identified in PubMed, Embase, CINAHL, PsycINFO, JSTOR, and MedNar. We included studies that used instruments that assess treatment involvement among adolescents (aged 11–18 years) with type 1 diabetes. All review steps involved two reviewers. Data extraction, charting, and analysis were guided by a template focusing on the content, structure, and application of instruments.

Results

This scoping review identified 23 instruments used in 52 studies, measuring different kinds of treatment involvement among adolescents with type 1 diabetes, e.g., communication with clinicians, clinicians' commitment, and shared decision‐making. Both instrument length and response formats varied across instruments. Some instruments were applicable in adolescents, whereas others were suitable for use in adults.

Conclusion

This review details the use of several instruments assessing treatment involvement experiences among adolescents with type 1 diabetes. The findings of this review can guide clinicians and researchers on optimal instrument content, structure, and application to implement a person‐centred care practice in paediatric diabetes care.

Abbreviations

APEQ‐DC

The Adolescent Patient Experiences of Diabetes Care Questionnaire

BDA

barriers to diabetes adherence

CIRS

Chronic Illness Resource Survey

DCS

Decisional Conflict Scale

DFBC

Diabetes Family Behaviour Checklist

DFCS

Diabetes Family Conflict Scale

DFRQ

Diabetes Family Responsibility Questionnaire

DMIS

Decision‐Making Involvement Scale

DSTAR‐Child

Diabetes Strengths and Resilience scale for children

FAD

McMaster family assessment device

IPSQ

In‐Patient Satisfaction Questionnaire

MISS‐21

Medical Interview Satisfaction Scale

MY‐Q

Monitoring Individual Needs in Diabetes Youth Questionnaire

PBI

Parental Bonding Instrument

PedsQL

Paediatric Quality of Life Inventory

PEQD

Patients' Evaluation of the Quality of Diabetes Care

PRISMA

preferred reporting items for systematic reviews and meta‐analyses

PRO

person‐reported outcomes

QPP

the questionnaire quality of care from the patient's perspective

STARx

The Successful Transition to Adulthood with Therapeutics = Rx Questionnaire

T1D

type 1‐diabetes

TRAQ

Transition Readiness Assessment Questionnaire

Summary.

• Adolescents' involvement in their type 1 diabetes care is important, but no consensus exists on the ideal person‐reported outcome instruments to support it.

• This review details the use of 23 instruments assessing treatment involvement experiences and provides guidance on optimal instrument content, structure, and application in paediatric diabetes populations.

• Advancing a person‐centred care practice among adolescents with type 1 diabetes implies prioritisation of user involvement in instrument design and validation.

1. Introduction

Given the chronic nature of their disease, adolescents with type 1 diabetes (T1D) hold considerable knowledge of their health and disease‐related symptoms [1]. In general, involving adolescents' knowledge about and attitudes toward their disease, treatment, and general well‐being is considered a meaningful aspect of diabetes care [2, 3]. Treatment involvement refers to individual's rights and benefits from being centred in their health care. We define treatment involvement as the processes of care in which the person's preferences, resources, and life situation are considered [4]. Individuals may feel involved in their treatment when they discuss treatment options and share decisions with clinicians or believe that they have the right amount of responsibility for their care. Adolescents' knowledge and perspectives can be used to evaluate the quality of paediatric diabetes services and have been shown to improve communication with clinicians, treatment satisfaction, and compliance, among other things [5, 6, 7], underlining the significance of a person‐centred approach to care [8].

Adolescents with T1D and their parents/caregivers (hereafter referred to as parents) face significant health responsibilities impacting daily life [9]. Adolescents often find self‐management overwhelming [10, 11, 12] and experience social stigma due to feeling different from peers [1, 12, 13]. Parents face constant stress and vigilance, concerned about managing the disease and potential complications [12, 14, 15].

The complexity and constancy of diabetes management emphasise the importance of improving both the processes (e.g., communication with clinicians) and outcomes (e.g., blood glucose levels) of paediatric diabetes care. One way to promote such improvements is by increasing adolescents' (and parents') experience of treatment involvement [2]. Therefore, there is a need to evaluate how much adolescents and their parents experience being involved in their treatment. This can be done with person‐reported outcome (PRO) instruments (also referred to as patient‐reported outcomes). PROs are defined as any report of the status of a person's health condition, e.g., their general well‐being (such as physical and mental wellness) or diabetes distress [16], that comes directly from the person without interpretation of their response [17]. PROs are used as an umbrella term in this review, involving both person‐reported outcome measures, such as physical functioning and mental health, and person‐reported experience measures, e.g., communication with clinicians and partnership [18]. In paediatric health care, parents' assessment of their own experience (self‐report), as well as their assessment of their children's experience (proxy report) with treatment, are often applied [19]. However, studies show that information from proxy respondents is not comparable to that reported by individuals themselves [19, 20]. Therefore, this review will focus on adolescents' perspectives. In addition, the participants in this present review are 11–18 years of age, which implies that they have the appropriate cognitive skills to read and understand questions and select answers matching their perspectives [7].

In recent years, PRO instruments have been developed and used in paediatric health care to increase adolescents' voices and involvement in treatment [21]. However, little attention has been directed toward evaluating treatment involvement experiences of young persons with diabetes, e.g., shared decision‐making experiences. To our knowledge, no publication to date has attempted to identify and map the available PRO instruments used to assess the experience of treatment involvement among adolescents with T1D. This can inform clinical practice and guide future research initiatives [22]. While most systematic reviews have focused on the effectiveness of PRO instruments in health care [23, 24], scoping reviews have mapped the PRO instruments used in the treatment of paediatric populations with the most common outcomes being health‐related quality of life, functional status, mental health, and specific symptoms [25, 26, 27, 28]. This review sought to identify and map PRO instruments used to measure the experience of adolescents (aged 11–18) with T1D of being involved in their treatment. The mapping provides an overview of available instruments, their specific content, structure, and application.

2. Methods

We conducted a scoping review of the literature to provide a descriptive synthesis of PRO instruments that assess the experience of treatment involvement among adolescents with T1D. The review was conducted following the JBI methodology for scoping reviews [29] and according to an a priori protocol [30].

2.1. Inclusion Criteria

2.1.1. Participants

Adolescents aged 11–18 with T1D [31].

2.1.2. Concept

All studies that explored (i) the content (such as items in the questionnaire), (ii) the structure (such as response categories), and (iii) the application (such as generic or disease‐specific instrument and validation status) of PRO instruments assessing participants' experience of involvement, e.g., communicating with clinicians about self‐management or feeling safe while talking to clinicians were included.

2.1.3. Context

All studies that involved any health‐care setting were included.

2.1.4. Types of Sources

All quantitative studies, such as questionnaire studies and validation studies, were considered for inclusion. Intervention studies were considered for inclusion. In addition, systematic reviews, texts, and opinion papers were considered for inclusion.

2.2. Exclusion Criteria

Studies were excluded if they investigated adolescents with chronic conditions other than T1D. Studies were also excluded if only adults with T1D were included. Studies of PRO instruments measuring only parents' (both proxy‐ and self‐reported) and clinicians' experiences of involvement were excluded. Furthermore, studies of PRO instruments assessing outcomes other than the experience of treatment involvement, e.g., the experience of getting information about treatment and self‐management from clinicians or the experience of being involved in treatment decisions, were excluded. Studies including only satisfaction questionnaires were excluded. Qualitative studies that focused on adolescents' experiences with the use of PRO instruments in their treatment were excluded.

2.3. Search Strategy

The literature search was conducted in January 2025. The search strategy sought to locate both published and unpublished literature. An initial limited search of PubMed (Ovid) and CINAHL (EBSCO) using the search terms “diabetes mellitus, type 1” AND “child” AND “adolescent” AND “involvement” AND “patient‐reported outcome measures” was undertaken to identify articles on the topic. The article text, words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles were used to develop a full search strategy for PubMed (Ovid) (see Appendix 1). The search strategy, including all identified keywords and index terms, was adapted for each included information source. The reference lists of the articles selected for full‐text review were screened to identify additional papers for inclusion.

The publication year was not limited as the development and use of PRO instruments are relatively new practices in health care. In addition, there were no limitations on the publication language.

The databases included were PubMed (Ovid), Embase (Ovid), CINAHL (EBSCO), PsycINFO (EBSCO), and JSTOR. Unpublished studies and grey literature were sourced from MedNar.

2.4. Source of Evidence Selection

After the search, all identified records were collated and uploaded into EndNote 20 (Clarivate Analytics, Philadelphia, USA), and duplicates were removed. The titles and abstracts were screened by two independent reviewers (CA and RR) for assessment against the inclusion criteria for the review. Potentially relevant papers were retrieved in full, and their citation details were imported into Covidence (Veritas Health Innovation, Melbourne, Australia). Full‐text studies were read by two authors (AJ and RR) who selected papers to include. Any disagreements between the reviewers were resolved through discussion between these authors.

No methodological quality assessment of the included papers was made, per the accepted standards for scoping reviews [32]. This extends to the assessment of the validity of the PRO instruments reported in this review.

2.5. Data Extraction

Data were extracted by two independent reviewers (AJ and RR) using a data extraction tool developed by the reviewers [30]. Two reviewers undertook pilot testing of three articles to ensure accuracy in capturing data. The data extraction template allowed for the description of different PRO instruments used to measure the experience of involvement among adolescents with T1D. The data extracted included specific details about study participants, concepts, contexts, and methods, as well as the content, structure, and application of the PRO instruments relevant to the research questions. Any disagreements were resolved through discussion between AJ and RR. The authors of the selected papers were contacted to request missing or additional data if required.

2.6. Synthesis of Results

First, frequency counts of PRO instruments related to treatment involvement among adolescents with T1D were performed with the qualitative data analysis software NVivo 1.7.1 (QSR International, Melbourne, Australia). Second, a descriptive qualitative content analysis, including the basic coding of data in NVivo, was undertaken. Text segments were coded according to the instrument content (the kind of treatment involvement evaluated, e.g., communication with clinicians), structure (e.g., the number of items and response categories), and use (e.g., in a specific population) by two authors independently (AJ and RR). Any disagreement was resolved by discussion. Frequency counts of the different codes were performed to identify any possible “gaps” in the existing PRO instruments. The results were tabulated by one author (RR) and checked by a second author (AJ). Any disagreements were resolved by discussion.

A narrative summary accompanies the tabulated results and describes how they relate to the review aims.

2.7. Reporting

The review is reported according to the preferred reporting items for systematic reviews and meta‐analyses extension for scoping reviews (PRISMA‐ScR) guidelines [32].

3. Results

In total, 1303 articles were identified via database searches. After duplicates were removed, 851 studies were screened for eligibility, and a total of 76 full‐text studies were retrieved for a second round of screening. If more than one study was conducted with the same PRO instrument, both/all these studies were included. Two studies were excluded as the PRO instruments were not available. Furthermore, 16 studies were included based on citation search. Two studies were included based on authors' suggestions. We included 52 studies comprising 23 PRO instruments measuring different kinds of treatment involvement among adolescents with T1D (Figure 1).

FIGURE 1.

PRISMA 2020 flow diagram.

3.1. Study Characteristics

The included studies were conducted in 27 countries. 35 studies were conducted in the United States. One study was a global study launched across five continents and 20 countries. Two studies were conducted in more than one country (one in Canada and France and one in Mexico, the United States, and the United Kingdom). The remaining studies were conducted in the United Kingdom (n = 2), Norway (n = 2), Sweden (n = 1), Denmark (n = 1), The Netherlands (n = 1), Canada (n = 2), Australia (n = 2) South Korea (n = 1), India (n = 1) and Qatar (n = 1). The studies were published between 1990 and 2023, and all were written in English. 29 of the included studies used a cross‐sectional design. The remaining study designs included five development and validation studies, six validation studies, five follow‐up studies, two translation and validation studies, and one of each of the following designs: development study, cohort‐sequential study, mixed‐methods study, review and case example, and Randomised Controlled Trial.

The participants in the studies were recruited from different contexts, e.g., hospital admission, paediatric clinics in tertiary care, and outpatient diabetes clinics in secondary care.

Among the studies, the most commonly used PRO instruments were the Diabetes Family Responsibility Questionnaire [33] (n = 14), Diabetes Family Conflict Scale [34] (n = 14), and Paediatric Quality of Life Inventory Diabetes Module [35] (n = 13).

3.2. Content, Structure, and Application of PRO Instruments

All studies were synthesised to report the content, structure, and application of the 23 PRO instruments measuring the experience of involvement among adolescents with T1D. Table 1 summarises the identified instruments and Table 2 describes the specific content of the instruments. Instruments are presented in their abbreviated form (see Table 1 for full phrase).

TABLE 1.

Summary of included instruments.

No.	PRO name	No. of items (involvement/total)	Type of response options	No. of response options	Type (disease‐specific/generic)	Target group	Validation
1	IPSQ (In‐Patient Satisfaction Questionnaire)	3/12	Satisfaction Scope	6	Disease‐specific	Persons with diabetes (all ages)	Validated in adults (diabetes)
2	PROMIS Paediatric Short Form Family Relationships	3/8	Time	5	Generic	Paediatricc populations (chronic conditions)	Validated in paediatric populations (chronic conditions, including T1D) User involvement in development and validation
3	MY‐Q (Monitoring Individual Needs in Diabetes Youth Questionnaire)	2/36	Time	6	Disease‐specific	Paediatric populations (T1D) c	Validated in paediatric populations (TD1) User involvement in development and validation
4	QPP (The questionnaire quality of care from the patient's perspective)	17/56 a	Agreement b	4/3 b	Generic	All populations	Validated in adults
5	APEQ‐DC (The Adolescent Patient Experiences of Diabetes Care Questionnaire)	9/29 a	Scope	5	Disease‐specific	Paediatric populations (T1D)	Validated in paediatric populations (TD1) User involvement in development and validation
6	STARx (The Successful Transition to Adulthood with Therapeutics = Rx Questionnaire)	9/20	Time Easiness	5	Generic	Paediatric populations (chronic conditions)	Validated in paediatric populations (chronic conditions, including T1D)
7	PEQD (Patients' Evaluation of the Quality of Diabetes Care)	6/14	Quality	5	Disease‐specific	Persons with diabetes (adults)	Validated in adults (diabetes)
8	DMIS (Decision‐Making Involvement Scale)	9/20	Scope	4	Generic	Paediatric populations (chronic conditions) Parents	Validated in paediatric populations (chronic conditions, including T1D) Validated in parents User involvement in development and validation
9	BDA (Barriers to diabetes adherence)	3/21	Truthfulness	5	Disease‐specific	Paediatric populations (T1D)	Validated in paediatric populations (TD1) User involvement in development and validation
10	MISS‐21 (Medical Interview Satisfaction Scale)	12/21	Agreement	7	Generic	All populations	Validated in adults
11	PedsQL (Paediatric Quality of Life Inventory) Diabetes Module	2/33	Problem experience	5	Disease‐specific	Paediatric populations (T1D)	Validated in paediatric populations (TD1) User involvement in development and validation
12	DFRQ (Diabetes Family Responsibility Questionnaire)	13/17	Responsibility	3	Disease‐specific	Paediatric populations (T1D) Parents	Validated in paediatric populations (T1D) Validated in parents User involvement in development and validation
13	DFCS (Diabetes Family Conflict Scale)	15/19	Time	3	Disease‐specific	Paediatric populations (T1D) Parents	Validated in paediatric populations (T1D) Validated in parents
14	DFBC (The Diabetes Family Behaviour Checklist)	12/16	Time	5	Disease‐specific	Paediatric populations (T1D) Parents	Validated in paediatric populations (T1D) Validated in parents User involvement in development and validation
15	The Collaborative Parent Involvement Scale	12/12	Time	4	Disease‐specific	Paediatric populations (T1D)	Validated in paediatric Populations (T1D) User involvement in development and validation
16	PBI (Parental Bonding Instrument) Short form	9/10	Likeliness	4	Generic	General adult and adolescent populations Paediatric populations	Validated in paediatric populations (chronic conditions)
17	CIRS (Chronic Illness Resource Survey)	3/22	Scope	5	Generic	Persons with chronic conditions	Validated in adults (chronic conditions)
18	Good2Go	13/20	Readiness	5	Generic	Paediatric populations (chronic conditions)	Validated in paediatric populations (chronic conditions, including T1D) User involvement in development and validation
19	TRAQ (Transition Readiness Assessment Questionnaire)	19/20	Independence	5	Generic	Paediatric Populations (chronic conditions)	Validated in paediatric populations (chronic conditions) User involvement in development and validation
20	DCS (Decisional Conflict Scale)	16/16	Agreement	5	Generic	All populations Parents	Validated in paediatric populations (chronic conditions) Validated in parents
21	On TRAck	19/24	Agreement	10	Disease‐specific	Paediatric populations (T1D) Parents Clinicians	Validated in paediatric populations (T1D) Validated in parents Validated in clinicians
22	DSTAR‐Child (Diabetes Strengths and Resilience scale for children)	5/12	Time	5	Disease‐specific	Paediatric populations (T1D)	Validated in paediatric populations (T1D)
23	FAD (McMaster family assessment device) Short form	6/12	Agreement	4	Generic	Adult and adolescent populations Parents	Validated in paediatric populations (T1D) Validated in parents

^a Questions and items are divided into “doctor” and “nurse” categories.

^b Each item is judged for perceived reality of the care (A) and for subjective importance of that item (B) A: 4 (Fully agree (4) to Do not agree at all (1)), B: 0 = No, 1 = Yes, and X = Not applicable.

^c Paediatrics encompasses all aspects of health care provided to children and continues through infancy, childhood, adolescence, and young adulthood. An upper age limit is not easily demarcated, varies depending on the individual, and should, therefore, not be encouraged.

TABLE 2.

Instrument content descriptors.

Type of involvement evaluated	PRO instrument(s)	Examples
Partnership with clinicians
Communication with clinicians	IPSQ APEQ‐DC STARx PEQD MISS‐21 CIRS Good2Go TRAQ DSTAR‐Child	Clear, understandable, and useful information Explanations about treatment and self‐management from clinicians Possibility to ask questions during consultations
Person‐centred communication and/or care	QPP MISS‐21 Good2Go DCS	One's knowledge is being taken into consideration Talk to clinicians about how one's health condition affects one's life Feeling understood by one's doctor
Shared decision‐making	IPSQ QPP APEQ‐DC STARx PEQD CIRS TRAQ DCS	Advice concerning the right insulin dose Involvement in decisions about health care, e.g., devices/equipment Having a say in what should be followed up before the next appointment Collaboration with doctor
Trust and safety	APEQ‐DC STARx MISS‐21 PedsQL Diabetes Module TRAQ	Safe bringing up difficult topics of conversation Talking about concerns and feelings Easy/hard to talk to the doctor/nurse Embarrassed while talking to the doctor Trusting the doctor with one's life
Autonomy
Responsibility	MY‐Q	Too much/little responsibility for diabetes care
Motivation and engagement	STARx Good2Go TRAQ On TRAck	Preparing and taking medications and/or treatments Confidence in taking care of diabetes tasks Information search, e.g., online or in books/guides Asking clinicians about treatment regimens Taking initiative to make appointments Attending medical appointments without parents
Activation	APEQ‐DC	Comments about the clinic Experience with filling in the questionnaire
Clinicians' commitment and respect
Clinicians' commitment	IPSQ QPP PEQD MISS‐21	Attitude of the hospital staff about diabetes treatment The doctors/nurses are interested in one's uplifts (e.g., something that makes a person feel more cheerful, positive, or optimistic), concerns, and hassles The doctors/nurses are interested in one's home situation Emotional support given by the internist Warm and friendly doctor
Clinicians' respect	QPP MISS‐21 CIRS	Honest answers to one's questions from the doctors/nurses Treated in a positive manner by the doctors/nurses Treated as an equal Having one's problems taken seriously by the doctor
Parent–adolescent relationship
Parent–adolescent interaction and communication about disease‐related issues	PROMIS Paediatric Short Form Family Relationships APEQ‐DC DMIS BDA DFRQ DFCS DFBC The Collaborative Parent Involvement Scale PBI On TRAck DSTAR‐Child FAD	(Un)supportive and (un)helpful parents Parent(s) or adolescent take or initiate responsibility for diabetes tasks Parents (do not) include the adolescent in diabetes decisions Asking parents questions Expressing an opinion or feeling to parents Negotiation Arguing about diabetes tasks

3.2.1. Content

The 23 PRO instruments evaluated several dimensions of the involvement in care and everyday life activities related to diabetes management (disease‐specific instruments) or other chronic conditions (generic instruments). Concrete questions or items of interest from each included instrument are reported in Appendix 2.

3.2.1.1. Partnership With Clinicians

A range of outcomes related to the partnership with clinicians was assessed in several of the included PRO instruments. The MISS‐21, IPSQ, STARx, PEQD, APEQ‐DC, CIRS, Good2Go, TRAQ and DSTAR‐Child focused on communication with clinicians [36, 37, 38, 39, 40, 41, 42, 43, 44]. Person‐centred communication or care based on the person's knowledge of the disease was also evaluated in the MISS‐21, QPP, Good2Go, and DCS [40, 42, 45, 46]. The IPSQ, STARx, PEQD, QPP, APEQ‐DC, CIRS, TRAQ and DCS assessed whether the individual was advised to make decisions about disease management and whether the individual shared such decisions with clinicians [36, 37, 38, 39, 41, 43, 45, 46]. Moreover, the MISS‐21, PedsQL Diabetes Module, STARx, APEQ‐DC and TRAQ evaluated whether the person felt safe and trusted clinicians to talk to them about difficult topics and private matters [35, 36, 38, 40, 43].

3.2.1.2. Autonomy

PRO instruments identified various outcomes related to the autonomy of individuals. MY‐Q assessed the person's level of responsibility for diabetes care [47]. STARx, Good2Go, TRAQ and On TRAck assessed the person's motivation and engagement in disease management [38, 42, 43, 48]. APEQ‐DC promoted active participation in care by asking the individual to provide potential conversation or discussion topics [36].

3.2.1.3. Clinicians' Commitment and Respect

Several instruments were used to assess perspectives on clinicians' commitment and respect toward treatment. The MISS‐21, IPSQ, PEQD and QPP measured whether persons felt clinicians were interested in their uplifts, concerns, and struggles. The feeling that clinicians were committed to allowing the individual to share their thoughts and worries and provide emotional support was also an outcome in these instruments [37, 39, 40, 45]. Furthermore, QPP, MISS‐21 and CIRS included outcomes concerning the person's experiences of being treated with respect by clinicians [40, 41, 45].

3.2.1.4. Parent–Adolescent Relationship

The DMIS, PROMIS Paediatric Short Form Family Relationships, BDA, DFRQ, DFCS, DFBC, The Collaborative Parent Involvement Scale, PBI, On TRAck, DSTAR‐Child and FAD addressed the parent–adolescent relationship regarding disease‐related issues [33, 34, 44, 48, 49, 50, 51, 52, 53, 54, 55, 56]. They measured parent–adolescent interactions, such as the adolescent's experience of being supported by their parents. They also addressed parent–adolescent communication, e.g., asking parents questions or expressing an opinion to the parents. Additionally, the APEQ‐DC included one question about the communication dynamics when or if parents attended consultations [36] (see Appendix 2).

3.2.2. Structure

The instruments included were structured in several ways. The number of questions or items in the PRO instruments ranged from 8 to 56. In most instruments, questions/items about treatment involvement were only a subset of the entire questionnaire (Table 1). The APEQ‐DC included an open‐ended question asking for topics of conversation or discussion [36].

The instruments had three to 10 response categories, commonly using five options. The types of response categories differed. The instruments measured the extent to which the individual experienced a given statement or situation (scope) [36, 37, 41, 51, 52], how often the individual perceived a given situation (time) [34, 38, 44, 47, 50, 53, 54], the extent to which the individual agreed with a given statement (agreement) [40, 45, 46, 48, 56] and perception of the quality of diabetes care (quality) [39, 57]. The instruments measured how satisfied a person was with a specific situation (satisfaction) [37], the person's assessment of the truth of a given statement (truthfulness) [49], how often the individual experienced a given situation in treatment as problematic (problem experience) [35] and how easy or hard the individual found certain things to do (easiness) [38] The experience of whether the person him/herself or their parents took responsibility for diabetes tasks (responsibility) [33], how likely it was that individuals perceived their parents in relation to a sequence of statements (likeliness) [55], the perceived readiness to manage treatment (readiness) [42] and levels of experienced independence in disease management (independence) [43], were also measured (Appendix 2).

In the QPP, each item was judged for perceived reality of care (“This is how it is for me”) and subjective importance of that item (“This is how important it is for me”) [45]. The APEQ‐DC used smiley faces to illustrate response options, while both APEQ‐DC and STARx included a “not applicable” or “don't know” option [36, 38]. The QPP and the APEC‐DC instruments divided questions and items into “doctor” and “nurse” categories, e.g., “The feeling that the doctors were interested in my uplifts” and “The feeling that the nurses and assistant nurses were interested in my uplifts” [36, 45].

3.2.3. Application

All PRO instruments were applicable in clinical care and research settings to measure treatment involvement experiences.

12 PRO instruments were disease‐specific, targeting either adolescents with T1D (MY‐Q, APEQ‐DC, BDA, PedsQL Diabetes Module, DFRQ, DFCS, DFBC, The Collaborative Parent Involvement Scale, On TRAck and DSTAR‐Child) (of which four instruments, DFRQ, DFCS, DFBC and On TRAck, also addressed parents) or adults with diabetes (IPSQ and PEQD). 11 instruments were generic, assessing individuals in general (QPP, MISS‐21, Good2Go, TRAQ and DCS), persons with chronic conditions (CIRS), adolescents with chronic conditions (Paediatric Short Form Family Relationships, STARx and DMIS) and paediatric populations and also healthy individuals (PBI and FAD). Two of these generic instruments assessed parents evaluating parent–adolescent interaction and communication (DMIS and DCS) (Table 1).

The PROMIS Paediatric Short Form Family Relationships, MY‐Q, APEQ‐DC, STARx, DMIS, BDA, PedsQL Diabetes Module, DFRQ, DFCS, DFBC, The Collaborative Parent Involvement Scale, Good2Go, On TRAck, DSTAR‐Child and FAD were established as valid instruments for assessing different aspects of treatment involvement among adolescents with T1D. The PBI, TRAQ and DCS were tested and validated among adolescents with chronic conditions. The IPSQ, QPP, PEQD, MISS‐21 and CIRS were suitable for use with adults. Furthermore, the involvement of adolescents in the development and validation phases of 11 instruments (Table 1), particularly through qualitative interviews, item generation, cognitive interviews, pre‐ and pilot testing, ensured that the instruments accurately reflected their experiences and needs.

4. Discussion

Several PRO instruments exist to measure the experience of treatment involvement among adolescents with T1D diabetes. According to the 52 studies reviewed, experiences of treatment involvement can be measured in several ways, e.g., by asking how much the individual is involved in their care decisions or how often the individual asks questions about illness, medicines, or medical care [37, 38]. Moreover, the impact that diabetes has on the everyday lives of adolescents and their parents is measured by items concerning interaction and communication about disease‐related issues between the parent and adolescent [33, 34, 36, 44, 48, 49, 50, 51, 52, 53, 54, 55, 56].

Despite the numerous ways to assess treatment involvement experiences, no agreement exists on the optimal PRO instrument content, structure, and use in adolescents with type 1 diabetes. Based on our review findings, we carefully provide guidance in this matter.

Selecting appropriate content highly depends on the adolescent's perspective. When considering important domains able to capture different aspects of treatment involvement experiences, it is crucial to take into account what the adolescents view as meaningful and relevant. The results of this review showed that 11 of the 23 included instruments were developed with feedback from adolescents themselves, elucidating a lack of adolescent involvement in the developing and testing phases of the instruments. A recent review of person‐reported experience measures in paediatric care also found that very few instruments were developed with the paediatric population in focus [58]. This central gap identified suggests that involvement of paediatric populations in instrument development warrants further attention.

Recognising the importance of instrument structure may also benefit the population of adolescents with T1D. Although the PRO instruments included in this review comprise numerous response categories, such as the extent to which the person perceives a given situation as true or problematic, little effort seems to have been exerted to accommodate the clinical target group. All instruments use numbers to indicate response options, except for the APEQ‐DC, which uses smiley faces to visualise the response categories. A qualitative study of adolescents' views on PRO instruments found that the adolescents noted concern about how their lives are represented within the fixed structures of the instruments. This led them to suggest an unstructured, flexible instrument format using pictures and symbols instead of numbers and words [59], indicating that such a structure is preferable for assessing adolescents. However, the choice of layout for response categories can significantly affect respondents' answers, making it crucial to carefully consider the optimal design format for PRO instruments [60]. Furthermore, literacy (reading and writing) skills partly determine a person's ability to complete a questionnaire in a valid manner. By using symbols such as smiley faces, data quality may be ensured not only when assessing adolescents but also some adults with limited literacy skills [20, 61, 62, 63, 64]. However, these individuals may still require assistance, e.g, from clinicians, to comprehend and complete questionnaires.

The number of questions/items in the instruments included in this review ranged from eight to 56, and in most instruments, only a subset of questions/items concerned treatment involvement. Research indicates that the length of questionnaires can significantly influence adolescents' engagement and the quality of their responses [65]. While longer questionnaires may provide more detailed data, they can also lead to lower response rates and potential biases. Designing concise, age‐appropriate PRO instruments is essential for obtaining valid responses from adolescents.

This review identified two PRO instruments (the QPP and APEQ‐DC), dividing questions and items into “doctor” and “nurse” categories [36, 45]. This division is fascinating as the findings of studies of children and adolescents' views of clinicians differ with the clinicians' professions. A study of children and adolescents' views of nurses' and doctors' roles showed that children and adolescents saw “caring” as the nurse's role and “curing” as the doctor's role [66]. Another study of hospitalised children and adolescents' representations of their relationships with nurses and doctors found that the children and adolescents viewed their relationships with clinicians positively, particularly with nurses. These relationships were viewed as close, intimate, cohesive, and without conflict. Sometimes, emotional bonds are developed [67]. These findings suggest a clear demarcation in children and adolescents' minds between doctors and nurses that may be better assessed by using “doctor” and “nurse” questions or items in PRO instruments for paediatric care.

Finally, proper instrument use relies on thorough validation within the target population. Most of the included instruments were suitable for use in adolescents with either T1D or chronic conditions. However, five instruments (the IPSQ, QPP, PEQD, MISS‐21 and CIRS) were only validated in adults. The inclusion of these instruments in the review can be questioned, as the primary target group for these instruments is adults; however, they were completed by adolescents in the included studies. Items and response options in these instruments may not be interpreted the same across respondents (youths and adults with T1D), leading to differential item function (DIF). Such age‐related DIF would potentially bias instrument scores [68]. Notably, most of the participants in the study who used the IPSQ were adults with diabetes [37]. The IPSQ is the only instrument applied in the context of admission, making it unique in the evaluation of involvement experiences. Moreover, the instruments comprise outcomes concerning aspects of treatment involvement that are highly relevant to assess in paediatric diabetes populations, such as communication with clinicians and shared decision‐making. Evidence of these instruments' validity among adolescents with T1D supports their use.

This review synthesised 52 studies, many of them recent, to present an overview of the PRO instruments used to evaluate experiences of treatment involvement among adolescents with T1D. The pattern of results is somewhat consistent across different study designs and contexts. Most of the studies were published in the 2010s or later, reflecting the increasing interest in the topic area. Despite the identification of multiple PRO instruments utilised for adolescents with T1D, this review has some potential limitations. All included instruments were applied in research settings to answer research questions or develop and validate the instruments. The lack of studies on the implementation and use of PRO instruments in routine clinical practice in this review can be explained by the exclusion of qualitative studies of adolescents' experiences with PRO instruments in their treatment. Such studies exist and may contribute to our understanding of the use of PRO instruments in paediatric care [20, 59, 61]. The scope of the experiences and perceptions of involvement that adolescents with T1D report should be explored via a qualitative review [69].

The methodological quality of the individual studies was not ascertained. However, the primary objective of this review was to identify and map PRO instruments, so a quality assessment of the studies was not necessary. Moreover, the majority of the included items/questions reflect person‐reported experience measures. Assessing their strengths and weaknesses would be subjective and dependent on the context. The literature search was done across languages but identified only studies in English. This may introduce a language bias where certain regions or cultures may be underrepresented, leading to an incomplete understanding of the topic. In addition, the majority of identified studies were carried out in high‐income countries, which may result in a skewed perspective, overlooking non‐English‐speaking regions. To mitigate such geographic and cultural limitations, this review may have benefited from developing a more comprehensive search strategy to identify studies in multiple languages. This review acknowledged that treatment involvement experiences among adolescents with T1D are a complex topic area and, therefore, applied rather broad inclusion criteria. Especially the context criterion of any health‐care setting allowed for the inclusion of PRO instruments used in both traditional health‐care settings, such as regular hospital appointments, and in nontraditional health‐care settings, e.g., everyday life situations. However, the complexity of the topic of interest may have led to potential exclusion of otherwise relevant studies and instruments. Lastly, one of the exclusion criteria was satisfaction questionnaires, as satisfaction measures are often falsely synonymised with experience measures like those of interest in this review. Experience evaluates whether a specific event that should occur in a health‐care setting—such as clear communication with clinicians—actually took place, while satisfaction reflects whether an individual's expectations of a health‐care encounter were fulfilled [70]. The interchangeable use of the terms “satisfaction” and “experience” may have resulted in an inadvertent exclusion of some PRO instruments. However, the likelihood of this happening was reduced through the review process and the inclusion of the term “patient satisfaction” in the search strategy.

5. Conclusion

This scoping review details the use of 23 PRO instruments available to evaluate treatment involvement experiences among adolescents with T1D. The findings of this review provide guidance to clinicians and researchers on ideal instrument content, structure, and application to implement a person‐centred care practice: (1) Greater user involvement in instrument development supports meaningful and relevant content. (2) Flexible response formats and balanced questionnaire length enhance usability and validity. (3) Thorough validation is a requirement for proper instrument application. Future research should prioritise adolescent‐centred instrument design and validation to improve assessment of treatment involvement in paediatric diabetes care.

Author Contributions

R.B.R. was primarily responsible for data collection, designing and performing the analysis, and writing the manuscript. C.B.A. was responsible for the data collection and designing and performing the analysis. A.L.J. was responsible for data collection, designing and performing the analysis, and acquiring funding. All authors contributed to designing the review and revising the manuscript, and approved the final version of the manuscript for publication.

Conflicts of Interest

The authors declare no conflicts of interest.

Appendix 1. Search Strategy

PubMed
Date searched: January 2025, 30
Search	Query	Records retrieved
#1	"Adolescent"[MeSH Terms] OR "Child"[MeSH Terms] OR "Child"[Title/Abstract] OR "Girl"[Title/Abstract] OR "Boy"[Title/Abstract] OR "Paediatric"[Title/Abstract] OR "Paediatric"[Title/Abstract]	3 735 067
#2	"Diabetes mellitus, type 1"[MeSH Terms] OR "Type 1 diabetes"[Title/Abstract] OR "Diabetes mellitus type 1"[Title/Abstract]	107 678
#3	"Patient‐Reported Outcome Measures"[MeSH Terms] OR "Patient Participation"[MeSH Terms] OR "Patient Satisfaction"[MeSH Terms] OR "Engagement"[Title/Abstract] OR "Involvement"[Title/Abstract] OR "Experience"[Title/Abstract] OR "patient‐reported experience measures"[Title/Abstract]	1 690 002
#4	"Patient‐Reported Outcome Measures"[MeSH Terms] OR "patient‐reported experience measures"[Title/Abstract] OR "Surveys and Questionnaires"[MeSH Terms]	1 289 678
#5	#1 AND #2 AND #3 AND #4	435

Note: String 3 and 4 are combined in order to restrict the search to only PRO instruments instead of PROs in general.

Appendix 2. Questions/Items Concerning Involvement in the PRO Instruments

No.	PRO instruments	Questions/item of interest	Response options
1	IPSQ	How satisfied were you with the attitude of the hospital staff regarding your diabetes control? Did you receive a clear explanation of how your diabetes would be treated in the hospital? Were you involved in decisions about your diabetes care in hospital?	Very satisfied to Very dissatisfied (6 being very satisfied and 1 very dissatisfied) Very much to Not at all (6 being very much and 1 not at all)
2	PROMIS Paediatric Short Form Family Relationships	I got all the help I needed from my family My parents listened to me My family paid a lot of attention to me	Never Rarely Sometimes Often Always
3	MY‐Q	Too much responsibility for diabetes care Too little responsibility for diabetes care	All the time Often Sometimes Seldom Never
4	QPP	The possibility to participate in the decision‐making process regarding my medical care The possibility to participate in the decision‐making process regarding my personal care The feeling that my knowledge of my illness/disease was taken into consideration The feeling that the doctors were interested in my uplifts The feeling that the doctors were interested in my concerns and hassles The feeling that the doctors were interested in my home situation The feeling that the doctors exhibited a sense of commitment The feeling that the nurses and assistant nurses were interested in my uplifts The feeling that the nurses and assistant nurses were interested in my concerns and hassles The feeling that the nurses and assistant nurses were interested in my home situation The feeling that the nurses and assistant nurses exhibited a sense of commitment The feeling that I have been treated with respect by the doctors A feeling of confidence that I received sincere answers to my questions from the doctors The feeling that I was treated in a positive manner by the doctors The feeling that I have been treated with respect by the nurses and assistant nurses A feeling of confidence that I received sincere answers to my questions from the nurses and assistant nurses The feeling that I was treated in a positive manner by the nurses and assistant nurses	Each item is judged for perceived reality of the care (A) and for subjective importance of that item (B) A: 4 (Fully agree (4) to Do not agree at all (1)) B: 0 = No, 1 = Yes, and X = Not applicable
5	APEQ‐DC	Do the nurses speak to you in a way that you understand? Do you feel safe bringing up things with the nurses that are difficult to discuss? Does the doctor speak to you in a way that you understand? Do you feel safe bringing up things with the doctor that are difficult to discuss? Are you given good advice to help you choose the right insulin dose? Do you have a say in what should be followed up before the next appointment? Are you involved in deciding which devices/equipment you should use? If your parents/guardians attend the appointment with you, who does the doctor or nurse mostly speak to? Any additional comments about the outpatient clinic or how you found completing the questionnaire	Not at all To a small extent To some extent To a large extent To a very large extent Not applicable/Don't know (used for most items) Smiley faces are used to illustrate response options
6	STARx	(Section 1) How often did you make an effort to understand what your doctor told you? How often did you ask your doctor or nurse questions about your illness, medicines or medical care? How often did you make your own appointments? How often did you need someone to remind you to take your medicines? How often did you use things like pillboxes, schedules, or alarm clocks to help you take your medicines when you were supposed to? How often did you use the internet, books or other guides to find out more about your illness? How often did you work with your doctor to take care of new health problems that came up? (Section 3) How easy or hard is it to talk to your doctor? How easy or hard is it to make a plan with your doctor to care for your health?	Section 1: Never Almost Never Sometimes Almost Always Always (‘I do not take medicines right know’ option for most questions) Section 3: Very Hard Somewhat Hard Neither Hard nor Easy Somewhat Easy Very Easy
7	PEQD	The clarity of information I receive from the internist The amount of information I receive from the internist The usefulness of the information I receive from the internist The opportunity to ask questions to the internist during the consultation The emotional support given by the internist The opportunity to share decisions with the internist about the treatment of my diabetes	Poor Fair Good Very good Excellent
8	DMIS	I asked my mom/dad for information I asked my mom/dad questions I expressed an opinion I suggested ideas My mom/dad listened to what I had to say My mom/dad gave me information I explained different options about what to do (joint) My mom/dad explained different options about what to do We negotiated (joint)	Not at all A little bit A moderate amount A lot
9	BDA	My parents usually want to hear my opinions about diabetes My parents do not try to include me in diabetes decisions My parents try to support me	Not at all true to Completely true (1 being not at all true and 5 completely true)
10	MISS‐21	The doctor told me all I wanted to know about my illness I am not really certain about how to follow the doctor's advice The doctor seemed interested in me as a person The doctor seemed warm and friendly to me The doctor seemed to take my problems seriously I felt embarrassed while talking with the doctor I felt free to talk to this doctor about private matters The doctor gave me a chance to say what was really on my mind I really felt understood by my doctor The doctor did not allow me to say everything I had wanted about my problems The doctor did not really understand my main reason for coming This is a doctor I would trust with my life	Very strongly disagree Strongly disagree Disagree Uncertain Agree Strongly agree Very strongly agree
11	PedsQL (Paediatric Quality of Life Inventory) Diabetes Module	It is hard for me to tell the doctors and nurses how I feel It is hard for me to ask the doctors and nurses questions	Never a problem Almost never a problem Sometimes a problem Often a problem Almost always a problem
12	DFRQ (Diabetes Family Responsibility Questionnaire)	Remembering day of clinic appointment Remembering to take morning or evening injection Making appointments with dentists and other doctors Taking more or less insulin according to results of blood sugar or urine tests Noticing differences in health, such as weight changes or signs of an infection Noticing the early signs of an insulin reaction Giving insulin injections Deciding what should be eaten when family has meals out (restaurants, friend's home) Examining feet and making sure shoes fit properly Carrying some form of sugar in case of an insulin reaction Rotating injection sites Checking expiration dates on medical supplies Remembering times when blood sugar or urine should be tested	Parent(s) take or initiate responsibility for this almost all of the time Parent(s) and adolescent share responsibility for this about equally Adolescent takes or initiates responsibility for this almost all of the time
13	DFCS (Diabetes Family Conflict Scale)	During the past month, I have argued with my parent(s) about… Remembering to give shots or to bolus (pump) Taking more or less insulin depending on results Remembering to check blood sugars Remembering clinic appointments Giving shots or boluses (pump) Meals and snacks Results of blood sugar monitoring The early signs of low blood sugar What to eat when away from home Making appointments with dentists and doctors Carrying sugar/carbs for reactions Supplies Rotating injection sites or infusion sets (pump) Changes in health (like weight or infections) Logging blood sugar results	Almost never Sometimes Almost always
14	The Diabetes Family Behaviour Checklist (DFBC)	Praise you for following your diet Nag you about testing your glucose level Suggest things that might help you take insulin on time Criticise you for not exercising regularly Help you decide if changes should be made based on glucose testing results Nag you about following your diet Argue with you about your diabetes self‐care activities Plan family activities so that they will fit in with your diabetes self‐care schedule Congratulate you for sticking to your diabetes self‐care schedule Criticise you for not recording the results of glucose tests Let you sleep late rather than getting up to take your insulin Buy you things containing sugar to carry with you in case of an insulin reaction	Never Twice a month Once a week Several times a week At least once a day
15	The Collaborative Parent Involvement Scale	I have a parent/guardian who… Helps me plan my diabetes care to fit my schedule Knows when I need a little extra help with my diabetes Helps me figure out how to change my insulin or eating to fit the amount I exercise Helps me out when I am too tired or stressed to take care of my diabetes on my own Helps me learn how to take care of troubles I have with my diabetes Helps me plan how to spend time with my friends and still take good care of my diabetes Talks with me about how to adjust (change) my insulin, eating, and exercise Helps me with my diabetes when I need it Helps me take care of any problems I am having at school with taking care of my diabetes Knows what things are hard for me in taking care of my diabetes Knows when to let me do more to take care of myself and my diabetes Knows how I am taking care of my diabetes when I am with friends	Almost never Sometimes Often Almost all the time
16	PBI (Parental Bonding Instrument) Short form	Parental control They liked me to make my own decisions They let me decide things for myself They tried to control everything I did They tended to baby me They were overprotective of me Parental care They did not talk to me very much They appeared to understand my problems and worries They did not help me as much as I needed They did not seem to understand what I needed or wanted	Very like Moderately like Moderately unlike Very unlike
17	CIRS (Chronic Illness Resource Survey)	Doctor involved you as equal in illness management decisions Doctor listened carefully Doctor thoroughly explained laboratory results	Not at all A little A moderate amount Quite a bit A great deal
18	Good2Go	I talk to my health‐care provider about ways to manage stress I talk to my health‐care provider about how my health condition affects my life I talk to my health‐care provider about the impact of my condition on my sexual functioning and health I talk to my health‐care provider about how my condition is affected by the use of tobacco, alcohol and drugs I take part in health‐care discussions about me I can describe my condition and explain my special health‐care needs to others I speak up for myself and tell others what I need during health‐care visits I plan how to take care of my own health needs When I get sick, I know how to get the help I need I am in charge of preparing and taking my medications and/or treatments on my own I know how to schedule a health‐care appointment I organise and keep track of my health information (e.g., appointments, medications, test results) I spend time alone with my health‐care provider at each visit	Low readiness to High readiness (1 being low readiness and 5 high readiness)
19	TRAQ (Transition Readiness Assessment Questionnaire)	Do you fill a prescription if you need to? Do you know what to do if you are having a bad reaction to your medications? Do you reorder medications before they run out? Do you explain any medications (name and dose) you are taking to health‐care providers? Do you speak with the pharmacist about drug interactions or other concerns related to your medications? Do you call the doctor's office to make an appointment? Do you follow‐up on referrals for tests or check‐ups or labs? Do you call the doctor about unusual changes in your health (for example: allergic reactions)? Do you fill out the medical history form, including a list of your allergies? Do you keep a calendar or list of medical and other appointments? Do you tell the doctor or nurse what you are feeling? Do you contact the doctor when you have a health concern? Do you make or help make medical decisions pertaining to your health? Do you attend your medical appointment or part of your appointment by yourself? Do you ask questions of your nurse or doctor about your health or health care? Do you answer questions that are asked by the doctor, nurse, or clinic staff? Do you ask your doctor or nurse to explain things more clearly if you do not understand their instructions to you? Do you tell the doctor or nurse whether you followed their advice or recommendations? Do you explain your health history to your health‐care providers (including past surgeries, allergies, and medications)?	No, I do not know how No, but I want to learn No, but I am learning to do this Yes, I have started doing this Yes, I always do this when I need to
20	DCS (Decisional Conflict Scale)	I know which options are available to me I know the benefits of each option I know the risks and side effects of each option I am clear about which benefits matter most to me I am clear about which risks and side effects matter most I am clear about which is more important to me (the benefits or the risks and side effects) I have enough support from others to make a choice I am choosing without pressure from others I have enough advice to make a choice I am clear about the best choice for me I feel sure about what to choose This decision is easy for me to make I feel I have made an informed choice My decision shows what is important to me I expect to stick with my decision I am satisfied with my decision	Strongly agree Agree Neither agree or disagree Disagree Strongly disagree
21	On TRAck	I can take care of my diabetes when I'm away from my family at night (sleepovers, camping with friends) I feel that I have enough support from my family to take care of my diabetes I feel that my parents encourage me to take care of my diabetes I feel that my parents believe I am able to take care of my diabetes My parents let me take care of blood sugar testing on my own My parents let me take care of insulin on my own I look for chances to learn more about diabetes I am the one in charge of planning and giving my insulin I know how to keep my blood sugar between 4 and 7 mmol/L I feel confident adjusting insulin on my own I feel confident adjusting insulin when I do physical activity I feel confident taking care of my diabetes when I am sick I need someone to remind me to take my insulin I feel confident in treating a low blood sugar I feel confident in treating a high blood sugar I know when to check for ketones I book my own diabetes appointments without help from family I feel comfortable talking to my doctor on my own without help from family I know how to reach the doctor or nurse, if necessary	Not at all to Totally (0 being not at all and 10 being totally)
22	DSTAR‐Child (Diabetes Strengths and Resilience scale for children)	I am able to ask my nurse or doctor questions about my diabetes My parent(s) help me take care of my diabetes I ask for help with my diabetes when I need to There is someone I can always ask for help with my diabetes I stay calm when I talk to my parent(s) about diabetes, like talking about blood sugar checks	Never Rarely Sometimes Often Almost always
23	FAD (McMaster family assessment device) Short form	In times of crisis we can turn to each other for support We cannot talk to each other about the sadness we feel We avoid discussing our fears and concerns We can express feelings to each other Making decisions is a problem for our family We are able to make decisions about how to solve problems	Strongly agree to Strongly disagree (1 being Strongly agree and 4 being Strongly disagree)

Data Availability Statement

Data sharing is not applicable to this article as no new data were created or analyzed in this study.