Implementing the Digital Diabetes Questionnaire as a Clinical Tool in Routine Diabetes Care: Focus Group Discussions With Patients and Health Care Professionals

Maria Svedbo Engström 1, 2  ;  Unn-Britt Johansson 3, 4  ;  Janeth Leksell 5  ;  Ebba Linder 6  ;  Katarina Eeg-Olofsson 6, 7, 8 



The Diabetes Questionnaire is a digital patient-reported outcome and experience measure for adults living with diabetes. The Diabetes Questionnaire is intended for use in routine clinical visits in diabetes care and to enable patient perspectives to be integrated into the Swedish National Diabetes Register.

The Diabetes Questionnaire was developed on the basis of patients’ perspectives, and evidence for its measurement qualities has been demonstrated. Patients receive an invitation to complete the questionnaire before clinical visits, and the patient and health care professional (HCP) can discuss the findings, which are instantly displayed during the visit. Implementation processes for new tools in routine care need to be studied to understand the influence of contextual factors, the support needed, and how patients and HCPs experience clinical use.


The aim of this study was to describe patients’ and HCPs’ experiences of initiating the use of the digital Diabetes Questionnaire as a clinical tool in routine diabetes care, supported by a structured implementation strategy involving initial education, local facilitators, and regular follow-ups.


In this qualitative study, semistructured focus group discussions were conducted 12 months after the use of the Diabetes Questionnaire was initiated. Participants were diabetes specialist nurses and physicians (20 participants in 4 groups) at hospital-based outpatient clinics or primary health care clinics and adults with type 1 or type 2 diabetes (15 participants in 4 groups). The audiotaped transcripts were analyzed using inductive qualitative content analysis.


The results revealed 2 main categories that integrated patients’ and HCPs’ experiences, which together formed an overarching theme: While implementation demands new approaches, the Diabetes Questionnaire provides a broader perspective.

The first main category (The Diabetes Questionnaire supports person-centered clinical visits) comprised comments expressing that the digital Diabetes Questionnaire can initiate and encourage reflection in preparation for clinical visits, bring important topics to light during clinical visits, and broaden the scope of discussion by providing additional information.

The second main category (The process of initiating the implementation of the Diabetes Questionnaire) comprised comments that described differences in engagement among HCPs and their managers, challenges of establishing new routines, experiences of support during implementation, thoughts about the Diabetes Questionnaire, need to change local administrative routines, and opportunities and concerns for continued use.


The Diabetes Questionnaire can broaden the scope of health data in routine diabetes care. While implementation demands new approaches, patients and HCPs saw potential positive impacts of using the questionnaire at both the individual and group levels.

Our results can inform further development of implementation strategies to support the clinical use of the questionnaire.

JMIR Diabetes 2022;7(2):e34561


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Principal Findings

The findings of the focus groups in this qualitative study revealed 2 main categories that integrated patients’ and HCPs’ experiences and together formed the overarching theme, While implementation demands new approaches, the Diabetes Questionnaire provides a broader perspective. The first main category (The Diabetes Questionnaire supports person-centered clinical visits) was based on comments expressing that the digital Diabetes Questionnaire encouraged reflection in preparation for clinical visits, brought important topics to light during clinical visits, and broadened the scope of discussion by providing additional information. The second main category (The process of initiating the implementation of the Diabetes Questionnaire) comprised comments that expressed differences in engagement among HCPs and their managers, the challenges associated with establishing new routines, experiences of support during the implementation of the Diabetes Questionnaire, thoughts about the questionnaire, the need to implement local administrative routines, and opportunities and concerns regarding continued use.

Comparison With Previous Work


During the implementation of PROMs, it is important to consider the needs and perspectives of patients and HCPs [27]. This is the first study focusing on patients’ and HCPs’ experiences of using the digital Diabetes Questionnaire in routine diabetes care clinical visits. In addition to valuable input to the specific project related to Swedish diabetes care and NDR, this study contributes to the collective learning process on the use and implementation of PROMs and PREMs in routine care.

Using PROMs and PREMs as Clinical Tools to Support Person-Centered Care

In accordance with previous proposals regarding the clinical use of PROMs [20-24], the current results suggest that the use of the digital Diabetes Questionnaire can support person-centered clinical visits for adults living with diabetes. This confirms the suggested potential benefits from the initial component of this study [29]. Although person-centered care can be defined in different ways, common characteristics involve active patient engagement; partnership; shared decision-making; and the need for care to be respectful of and responsive to individual patient preferences, needs, and values [32,33]. For diabetes care, it has been emphasized that HCPs and patients have a shared responsibility to make person-centered clinical visits possible. A central prerequisite is that both parties be adequately prepared. Patients have an important responsibility to raise topics that are important to them, and HCPs are expected to be up-to-date with each patient’s records and ongoing progress [34]. In this study, the digital Diabetes Questionnaire was found to support reflection and active preparation for patients and HCPs. During clinical visits, the questionnaire helped to bring important and sometimes newly revealed topics to light and strengthened collaboration and mutual participation. Comparable findings were reported in Swedish rheumatology care [35], where the use of PROMs has been found to strengthen patients’ involvement and support interaction and shared decisions between HCPs and patients.

Although strengthening patient perspectives in diabetes care has been a topic of research interest for many years [6-8,16,36], research continues to show a gap between recommendations and patient experiences. Adults with diabetes still describe a lack of person-centered care and a desire for HCPs to understand more about their situation and needs and which actions and approaches of HCPs are most helpful [37]. More structured strategies for incorporating patients’ perspectives and encouraging active patient participation in clinical visits are warranted [38]. As a clinical tool, the Diabetes Questionnaire can provide a helpful step in the direction of systematically strengthening patient perspectives. However, this does not exclude the need for other actions. Initiatives such as digital web-based tools for self-monitoring and interacting with diabetes specialist nurses for self-management support [39] may be well suited for use in combination with the questionnaire.

A unique feature of the Diabetes Questionnaire is that, in addition to elucidating experiences in daily life, it includes experiences of support from diabetes care. In the first part of this study [29], concerns were raised regarding whether patients would be comfortable about being honest and whether HCPs and patients would be comfortable discussing the relevant issues [29]. However, in accordance with previous studies describing the basis for and development of the Diabetes Questionnaire [3,5], the results from this study confirm the value of discussing the extent to which patients experience adequate support from diabetes care. Aspiring for collaboration and partnership, it should be possible to discuss questions such as the extent to which the individual patient experiences the support they need and whether the patient feels able to talk about the topics that are most important to them during clinical visits. However, in cases where PREM scores were very low, patients suggested that it may be appropriate to involve a different HCP in the follow-up.

In Norway, a related project investigated the assessment of diabetes distress in diabetes care for young adults with type 1 diabetes. This previous study used the Problem Areas In Diabetes (PAID) scale in conjunction with an empowerment-based communication manual to guide nurses in reviewing and discussing PAID scores [40-42]. In accordance with the current results, the researchers reported that their approach promoted reflective thinking and dialogue and facilitated patient-provider relationships and person-centeredness [42]. Another similarity between the results of the 2 studies is that the questionnaire scoring was enlightening for HCPs [42,43]. Satisfactory glycemic control can obstruct HCPs’ understanding of the patient’s situation, thus concealing significant challenges they face in everyday life. Questionnaire data can reveal important information about adults with diabetes, for whom the everyday personal cost of well-controlled glucose levels can be high. Similar to PAID scale [42], the Diabetes Questionnaire can be helpful for focusing on individual patient experiences and topics other than medical matters that potentially affect medical outcomes. Another similarity with the Norwegian results [42] is the importance of discussing the patients’ responses and the need for patients to be able to clarify the nuances and rationale behind their responses. Furthermore, excessive focus is sometimes placed on numerical scores. Instead, it may be preferable for questionnaires to be used as conversation starters that make the dialogue more constructive and facilitate participation.

As in the current results, the young adults in the Norwegian project appreciated the enhanced emphasis on their situation and expressed that it was worth the time required to complete the questionnaire as preparation for clinical visits. However, the findings also revealed that completing PAID scale and discussing their responses made patients feel exposed, uncomfortable, and vulnerable and that some items were painful to answer [42]. We did not find similar reactions to the Diabetes Questionnaire in this study. As highlighted in an increasing number of studies [44-48], the careful and reflective use of language is important in diabetes care, and the words used can impact how individuals view diabetes and themselves. During the development of the Diabetes Questionnaire, special effort was made to reflect the phrasing used by adults living with diabetes and to avoid being disrespectful or offensive or adding to the burden of diabetes [2,3]. In this study, the Diabetes Questionnaire was found to encourage the idea that a good life is possible with diabetes and support HCPs in giving positive feedback to patients. However, during clinical visits, HCPs found it natural to focus on dimensions with low scores and felt that it was important to do so openly. In addition to the positive statements from patients, some participants remarked that there may also be a risk of emphasizing the difficulties. This risk will be important to be examined in more detail in future studies. In addition to differences between the 2 questionnaires’ content or wording, differences in experiences may also be related to practices regarding discussion of patient experiences in clinical visits or the specific focus on young adults with type 1 diabetes in the Norwegian studies [40-42]. Another related initiative is the recently announced Danish implementation of a nation-specific digital tool for patient-reported outcomes [49]. Similar to this study, the researchers targeted adults with type 1 and type 2 diabetes more broadly.

Implementing PROMs and PREMs in Routine Practice

The current results have many similarities to the facilitators and barriers to implementing PROMs and PREMs in organizations delivering health-related services identified in a review of reviews reported by Foster et al [27] and in a summary of case studies reported by Stover et al [50]. In accordance with the current results, a central message is that integration into routine care requires effort and time [27,50]. Central traits that have been reported to facilitate implementation include the experience of specific PROM or PREM measures as a meaningful and useful approach for strengthening patient perspectives. Another important trait is the existence of evidence that these tools have satisfactory measurement quality [27,50]. Consistent with the findings of previous studies [1-4,29], the current results add to the increasing evidence suggesting that the Diabetes Questionnaire possesses the necessary central traits.

In addition to these central traits, the identified facilitating characteristics for PROMs and PREMs include application at the individual level, absence of license costs, user-friendly technical systems, and directly and easily available data. Further facilitating characteristics include the possibility to adapt data collection and clinical use to organizational work processes and appointment schedules [27,50]. The Diabetes Questionnaire is intended for use at the individual level, and there is no license cost for clinics connected to the NDR. This study shows that the provided digital tool was easy to use for data collection and presentation of scores. However, HCPs experienced barriers related to the local administrative procedures and systems for invitation. Similar to the findings reported by Stover et al [50], the HCPs in our study suggested that these administrative barriers needed to be resolved locally to fit each clinic’s resources, existing routines, technical systems, and workflows.

Currently, there is lack of information regarding the potential need to prepare patients for the use of PROMs [27]. Patients in our study found the digital questionnaire easy to use, and special training other than information from their HCP was not requested. However, it was suggested that the diabetes nurse could potentially be of assistance for the first time the questionnaire is introduced. The participating patients in this study received information about the intentions of using the Diabetes Questionnaire and the data collection process during an introductory meeting for the study. Consequently, future evaluations are needed to determine whether the information provided by HCPs during clinical visits is sufficient. A potential negative aspect related to digital PROMs highlighted in a review by Meirte et al [24] is that some patients, particularly those who are older, may have difficulties in using technology. This was also suggested in our focus groups with patients; however, it was not directly experienced by our participants. In contrast, HCPs in our study reported that their older patients had higher response rate than their younger patients. Similar to Meirte et al [24], our focus groups suggested that a paper version could be offered to those who were less familiar with technical tools.

Some HCPs found it natural to integrate the Diabetes Questionnaire into the dialogue, reporting that it did not necessarily take more time and, possibly, even saved time. However, as described by Stover et al [50], we found that it could be challenging for HCPs to know how to initiate related dialogue. This dialogue was also experienced as interfering with other responsibilities during the limited time available during clinical visits. Barriers related to competing priorities and worries regarding workload have also been described in previous studies [43,50]. In the Norwegian project using PAID scale in diabetes care mentioned previously [43], substantial challenges were described regarding time and resources and the need to balance between addressing patients’ emotional concerns and HCPs’ other duties. The competing responsibilities described were mainly technical issues for diabetes nurses and biomedical issues for physicians [43]. While patients in our study clearly stressed the need to discuss their questionnaire scores, concerns were raised about whether the HCPs would have the time needed on a routine basis. Patients expressed that the main benefits of the questionnaire were related to the clinical dialogue about their individual situation. Similar to the previously reported barriers regarding group-level monitoring of PROM data alone [27], patients in our study questioned the benefits of completing the questionnaire if there was no related dialogue. Potential benefits of cross-sectional and longitudinal group-level analyses and quality improvement informed by PROM and PREM data were discussed by both patients and HCPs. However, the patients expressed that regardless of the value of the data, this should only be seen as an additional benefit of broad implementation at the individual level, rather than being the main objective.

The implementation of the Diabetes Questionnaire was predominantly taken on by small groups or solitary enthusiastic individuals. The engagement and support experienced from coworkers and managers varied. This does not appear to be a unique situation. According to Foster et al [27], the main workload often falls on a few members of the working team. The current results also revealed that HCPs who described team effort and engaged support from their manager found this situation helpful.

Contextual factors such as leadership, organizational culture, and readiness for change have been reported in several implementation frameworks to influence implementation [51]. In situations where the implementation process is proposed by the organization, it has been recommended that the manager needs to be engaged to motivate the use of PROMs and lead the implementation process [27]. However, there is a knowledge gap regarding cases in which clinicians want PROMs to be implemented but the organizational culture or manager is not receptive to change [27]. In this study, the managers had to agree to their clinic’s participation. However, the wish to implement the Diabetes Questionnaire generally came from HCPs and not from their managers. Some HCPs described their managers as being genuinely engaged. However, some HCPs described managers who did not consider the implementation to be sufficiently important for the clinic to invest time in, but rather as being beneficial for the individual HCP, who should be thankful for being allowed to implement it. Integrating patients’ perspectives in clinical visits and outcome assessments of care at the individual and group levels is recommended in the guidelines for diabetes care [6-15].

The current results support previous reports [27,43] that the use of PROMs often comes with conditions, requiring the capacity and resources to handle the responses in individual clinical visits and health care organizations and in the long term [27,43]. The implementation of the questionnaire cannot rely on solitary enthusiastic individuals and should not be seen as a measure that only benefits HCPs. Clinic managers, decision makers, and health care organizations need to provide prerequisites and support for HCPs to be able to focus on the emotional aspects of diabetes. To achieve this goal in routine care, considerable amount of important work remains to be done.

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