Following recommendations from the World Health Organization (WHO), the Department of Health in England developed a set of quality criteria for youth-friendly health services to meet the needs and fulfill the rights of CA \u200b(11)\u200b. One of the themes emphasizes the importance of CA participating in the evaluation of their treatment.<\/span><\/p>\nThe Children\u2019s Council in Denmark has established principles aimed at enhancing and qualifying children\u2019s involvement \u200b(12)\u200b. These principles are based on the UN Convention on the Rights of the Child, which asserts, among other things, children\u2019s right to be involved and heard \u200b(13)\u200b. By involving CA, the healthcare system gains valuable insights into their opinions, experiences, desires, and perspectives \u200b(12)\u200b. Therefore, it is imperative for the healthcare system to consider CA experiences with health services as part of service development, monitoring, and evaluation. CA should routinely be consulted regarding current services, relevant new developments, and inclusion in patient satisfaction surveys.<\/span><\/p>\nAt Great Ormond Street Hospital in England, the PREM <\/span>\u201cWhat do you think about the hospital? Help us get better\u201d<\/span> was initially developed as a single questionnaire for CA aged 8-16 years. During the development, it was identified that some questions were age-specific, leading to the creation of three age-specific versions: 8-11 years, 12-13 years, and 14-16 years. Each version (30, 37, and 38 questions) was developed with feedback from CA \u200b(6)\u200b. These questionnaires, focused on the outpatient clinic, have been translated into Danish. <\/span>This study concerns only these outpatient versions. <\/span>The translation process followed WHO recommendations and included forward translation, expert panel evaluation, back translation, and pre-testing that explored face and content validity using cognitive interviews \u200b(14)\u200b. <\/span>This study contributes to the literature by specifically addressing the underrepresentation of CA voices in healthcare evaluations, thereby enhancing the understanding of their experiences in a Danish pediatric setting.<\/span><\/p>\nThe aim of this study was to pilot test the PREM titled<\/span> “What do you think about the hospital? Help us get better”<\/span> (translated into Danish as <\/span>“Hvad synes du om hospitalet? Hj\u00e6lp os med at blive bedre”<\/span>) in a Children and Adolescent Outpatient Clinic in Denmark. The pilot testing focused on assessing the practicality of using PREM in this specific outpatient setting. Key objectives included evaluating the completeness of the data collected, identifying potential response errors, and understanding the appli-cability of the instrument within the Danish cultural and linguistic context.<\/span> It is important to note that the pilot study did not aim to evaluate the results or outcomes of PREM itself, but rather to assess its suitability and robustness before broader application in other settings.<\/span><\/p>\nMethod
\n<\/span>Setting. <\/span><\/strong>The study was conducted at the Children and Adolescent Outpatient Clinic Department of Paediatrics and Adolescent Medicine, Aarhus University Hospital in Denmark. <\/span>The clinic sees approximately 25,000 CA annually and employs 35 nurses and 40 consultant MDs. <\/span>It is organized into four units, each responsible for 3-4 different specialties. <\/span>Across the units, specialties include pulmonology, urology and nephrology, infectious diseases, hemophilia, rheumatology, neurology, endocrinology and gastroenterology. The out-patient clinic primarily serves children and adolescents for follow-up care of chronic illnesses and routine consultations, excluding in-patient and emergency visits.<\/span><\/p>\nInclusion and exclusion
\n<\/span><\/strong>A pilot test was conducted from June to Sep-tember 2021, during which PREM was distributed in paper form to all CA aged 8-17 years attending <\/span>check-ups. All eligible patients were invited to participate, and some received assistance with reading individual questions aloud if needed. Those who, due to significant cognitive impairment, were unable to complete the questionnaire even with assistance were not included. Questionnaires with substantial missing responses were excluded from the analysis. The completed questionnaires were collected at the pediatric unit, ensuring a direct submission.<\/span><\/p>\nEthics
\n<\/span><\/strong>The study adhered to the Helsinki Declaration and international ethical guidelines, ensuring respect for children\u2019s rights \u200b(13,15,16)\u200b. Approval was obtained from the department’s manage-ment and informed consent was obtained from parents, with assent sought from all participants.<\/span><\/p>\nPREM instrument
\n<\/span><\/strong>PREM used in this study was developed to assess children’s and adolescents’ experiences with hospital care. Originally designed in English, the questionnaires were later translated and culturally adapted to Danish in a previous project\u200b(14)\u200b. During this process, the original single questionnaire was split into three age-specific versions (8-11 years, 12-13 years, and 14-16 years) to ensure relevance across age groups. Additionally, one item was removed due to cultural irrelevance. <\/span>The Danish versions of the questionnaires consisted of 29, 36, and 37 questions, respectively, tailored to the cognitive and developmental stages of the age groups. Each version covered the following domains: <\/span>The Hospital, Treatment, Examinations and Tests, Staff, Home from the Hospital, <\/span>and<\/span> About You<\/span>. <\/span>The questionnaires combined closed-ended items using Likert-type scales and open comment fields, allowing participants to elaborate on their experiences in their own words. This mixed format enabled both quantitative and qualitative analysis of user experiences.<\/span><\/p>\n\n
Example of questions in PREM: <\/span><\/strong>“Did the staff treat you with respect?\u201d <\/span>(Likert scale: Always \u2013 sometime \u2013 never)<\/span> \u201cIf you\u2019d like to, please tell us things that were good or bad about the hospital.\u201d <\/span>(Free text)<\/span> \u201cHow friendly were the hospital staff?\u201d <\/span>(Likert scale: Very friendly \u2013 Friendly \u2013 In between \u2013 Unfriendly \u2013 Very unfriendly).<\/span><\/p>\n<\/div>\nData Collection
\n<\/span><\/strong>Data were collected using the Danish versions of PREM questionnaires, distributed in paper form across four clinical units in the department. Due to variations in local workflows, distribution methods varied across the units. In two units\u2019 healthcare staff handed out age-appropriate questionnaires directly to the children during their appointment, while in the other two units, the forms were made available in waiting areas for self-selection. <\/span>All completed questionnaires were anonymous and returned via healthcare staff or collection boxes. As distribution was informal and voluntary, the total number of distributed questionnaires is unknown, and thus no response rate could be determined. Responses were manually entered into REDCap, a secure online database used in the Region Midt, with guidance from the REDCap team at Aarhus University Hospital. The first author handled all data entry to ensure accuracy and consistency.<\/span><\/p>\nData Analysis
\n<\/span><\/strong>Both thematic analysis and descriptive statistics were applied. Thematic analysis, guided by Braun and Clarke (2012) \u200b(17)\u200b, Two authors independently familiarized themselves with the data and generated inductive codes from all comments. Codes were compared and grouped into themes, which were reviewed, refined, and defined through iterative discussions to ensure internal consistency and distinctiveness. Although many comments were brief, recurring patterns across responses were identified by examining both explicit statements and shared underlying ideas. Reflexive discussions and independent coding were used to enhance credibility and trustworthiness.<\/span><\/p>\nA total of 118 free-text comments from 98 participants were analyzed. Due to the brevity of many responses, the thematic analysis focused on identifying recurring patterns and general attitudes, rather than in-depth insights. Key themes such as satisfaction with care, communication, and environment were identified and refined through discussion to ensure consistency. <\/span>Descriptive statistics summarize quantitative variables. Data were systematically entered into REDCap, adhering to security standards, and the first author exclusively handled data transfer to ensure accuracy.<\/span><\/p>\nResults
\n<\/span><\/strong>A total of 414 questionnaires were collected (see<\/span> Flowchart<\/span> Figure 1<\/span><\/strong>).<\/span><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/01\/FIGURE-1.png?resize=584%2C437&quality=80&ssl=1\")
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Across the four clinical units, differences in the local distribution processes appeared to influence the completeness of the returned questionnaires. Units where healthcare staff handed out questionnaires directly to CA generally returned more fully completed forms. In contrast, units that used self-selection in waiting areas had a higher proportion of mis-matched or incomplete questionnaires. These incomplete responses were most often related to CA selecting the wrong age-specific version or omitting items, suggesting that the method of<\/span> administration impacted data quality. Since the questionnaires were distributed informally and without documentation of the total number handed out, the response rate could not be calculated.<\/span><\/p>\nAbout you. <\/span><\/strong>Between 94.8% and 97.8% in all age groups reported Danish as their primary language. <\/span>Table 1<\/span><\/strong> presents detailed information regarding participant sex and language, indicating that a significant majority in all age groups had previously visited the Children and Adolescent Outpatient Clinic.<\/span><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/01\/TABLE-1.png?resize=614%2C395&quality=80&ssl=1\")
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The Hospital. <\/span><\/strong>These findings illustrate how PREM can identify age-related differences in patient experiences. CA responses highlighted differences in the perceived availability of activities in both waiting <\/span>areas and examination rooms. Younger children (8-11 years) were more likely to report that there were at least \u201csome\u201d or \u201da lot\u201d activities, whereas older children and adolescents (12-17 years) more often indicated that there were \u201cfew\u201d or \u201cno\u201d activities. A similar pattern was observed across both settings. <\/span>Th<\/span>ese results are summarized in <\/span>Table 2<\/span><\/strong> illustrating<\/span> how PREM can identify age-related differences in patient experience and highlight areas where improvements in the hospital environment may be particularly important for older CA.<\/span><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/01\/TABLE-2.png?resize=450%2C293&quality=80&ssl=1\")
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Qualitative comments provided in the free test field revealed that younger children often expressed a desire for coloring books and crayons. In contrast, older children and adolescents generally preferred no activities in the examination rooms, as they wished to focus on the consultation and follow along with the conversations and decisions. <\/span>In response to the question <\/span>\u201cWere there enough things for adolescents your age to do in each of these places?\u201d<\/span> (regarding the outpatient clinic room) one girl wrote next to the question:<\/span><\/p>\n“There shouldn’t be any toys because you have to listen”<\/span> <\/span><\/em>(Girl, 14 years old). <\/span>Moreover, when asked about the adequacy of activities in the waiting area, several adolescents commented: <\/span><\/p>\n“I don’t need anything since I have my phone with me.” <\/span><\/em><\/p>\nThis highlights a shift in preference as adolescents increasingly rely on personal devices for entertainment. <\/span>Additionally, many participants suggested improvements to the waiting area, including access to drinks such as coffee, cold water, or juice. Several adolescents expressed a desire for facilities specifically directed at them, such as youth magazines and a speaker with soft music. <\/span>Furthermore, many adolescents wished for waiting areas to be separated from those designated for children, emphasizing the need for environments tailored to their developmental stage.<\/span><\/p>\nIn the free text, some wrote: <\/span>“Things on the floor like hopscotch, just so you might be able to jump around so you could play ‘The floor is lava\u201d <\/span><\/em>(Girl, 9 years old).<\/span><\/p>\n“For me as a teenager, it can be annoying to be in a waiting room where there are children playing and making noise” <\/span><\/em><\/span>(Boy, 16 years old).<\/span><\/p>\nTreatment, Examinations and Tests
\n<\/span><\/strong>Visiting a CA clinic is often associated with anxiety, and this varies by age. Younger children (8\u201311 years) reported more concern during visits compared with older CA, while the proportion of those not feeling concern increased with age. Across all age groups, communication with staff was the most commonly reported and helpful coping strategy, with nearly all adolescents indicating that conversations with staff supported them during procedures. <\/span>Other strategies, such as playing games, were especially beneficial for younger children. A small subset of CA preferred no coping strategies, particularly among older adolescents, highlighting that individual preferences vary. These findings illustrate how PREM can identify agerelated differences in both experienced anxiety and preferred coping strategies, offering actionable insights for tailoring supportive care. See anxiety and coping strategies in Table 3<\/strong>.<\/span><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/01\/TABLE-3.png?resize=700%2C238&quality=80&ssl=1\")
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Staff
\n<\/span><\/strong>In terms of non-verbal communication, adolescents aged 14-17 reported that staff made more eye contact with them under interaction. Notably, these adolescents also reported the best understanding of the information provided in the clinic. Several adolescents emphasized the importance of continuity in the treatment team to increase their sense of security during consultations.<\/span> A girl wrote a comment in the free text, which illustrates these points:<\/span><\/p>\n“It is really nice, creating a sense of security and comfort, knowing that we meet the same doctors and nurses each time, as this fosters recognition and strengthens relationships” <\/span><\/em>(Girl, 16 years old).<\/span><\/p>\n“For my asthma check-up, there is almost always a new doctor. They all have different opinions. It is frustrating that they expect something different from me. But the nurses are always sweet and accommodating” <\/span><\/em>(Girl, 15 years old).<\/span><\/p>\nAdolescents generally reported being encouraged to ask questions about their illness or treatment, a trend consistent across all age groups. Older adolescents (12\u201317 years) more frequently felt involved in treatment decisions compared with younger children, with girls reporting the highest perceived influence. <\/span>Regarding the transition to adult care, many adolescents expressed concerns about leaving the pediatric clinic. A substantial portion of 12\u201313-year-olds had not been informed of changes in staff expectations, and half had not experienced a split visit (time alone with the doctor or nurse). Among 14\u201317-year-olds, more adolescents had opportunities for split visits, though a considerable proportion still had not. <\/span>These results illustrate how PREM can identify age-related differences in communication, involvement, and transition preparedness, highlighting opportunities to improve adolescent-centred care (see Table 4).<\/strong><\/span><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/01\/TABLE-4.png?resize=700%2C431&quality=80&ssl=1\")
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Regarding the transition to adult care, many adolescents expressed concerns about leaving the pediatric clinic. Among the 12-13-year-olds, 70% (n=46) had not been informed of changes in staff expectations. Half of the 12-13-year-olds were not given the opportunity to be seen alone by a doctor or nurse, with 27.3% (n=18). Among 14\u201317-year-olds, a similar trend was observed, but 36.4% (n=56) had been seen alone without parents. Figure 2<\/strong> illustrates that the frequency of split visits varied by age, with more 17-year-olds not being given this opportunity compared to younger adolescents. Additionally, a higher per-centage of girls in the 14-17 age group (20.8%, n=32) had been seen alone, compared to boys (15.6%, n=24). Many adolescents voiced anxiety about transitioning from the familiar Children and Adolescent Clinic to the unknown Adult Clinic. <\/span><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/01\/FIGURE-2.png?resize=704%2C449&quality=80&ssl=1\")
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Next to the question <\/span>\u201cHas someone from the hospital spoken to you about what will happen when you move to an adult hospital? They may have called this transition?\u201d <\/span>a boy wrote:
\n<\/span>“I don’t want to leave the children and adolescent clinic” <\/span><\/em>(Boy 16 years old). <\/span>Only 13.6% (n=21) of adolescents were aware of which adult department they would be transferred to at age 18. Among the 14-17-year-olds’ responses indicated varied levels of information: some answered: <\/span>\u201cNo, but the staff has talked about it, while others reported \u201cNo, the staff has not told me”.<\/span><\/em><\/p>\nThese responses reflect that many adolescents had limited or no direct information about their upcoming transfer, see <\/span>Figure 3<\/span><\/strong>.<\/strong> The proportion of adolescents who were unaware of their transfer increased with age, see <\/span>Figure 4<\/span>.<\/span><\/strong><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/01\/FIGURE-3-OG-4.png?resize=705%2C552&quality=80&ssl=1\")
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Home from the Hospital
\n<\/span><\/strong>Most respondents across all age groups reported knowing whom to contact if concerns arose after leaving the clinic, although around 10% did not. Overall, the majority of children and adolescents rated their visit to the clinic positively, with older adolescents (14\u201317 years) most frequently describing their experience as <\/span>\u201cvery good.\u201d<\/span> Younger children (8\u201311 years) and early adolescents (12\u201313 years) also reported predominantly positive experiences, with very few negative ratings on their visit. These findings illustrate how PREM can capture post-visit concerns and overall patient satisfaction, providing insights into areas for improvement in communication and follow-up care.<\/span><\/p>\nDiscussion
\n<\/span><\/strong>The aim of this study was to conduct a pilot study of the PREM “What do you think about the hospital? Help us get better” in a Children and <\/span>Adolescent Clinic in Denmark. <\/span>The findings indicate that CA were generally willing to provide feedback on their care experience. This positive response highlights the importance of engaging CA in the effort to improve pediatric care. <\/span>It is important to note that the study focuses specifically on a clinic in Denmark. As such, the findings may not be directly applicable to all pediatric units in Denmark, let alone across Europe or globally. Further research is needed to determine if the results can be generalized to other settings or populations. While the results offer insight into how CA experienced their care visits, they do not capture the importance of these experiences. <\/span>The responses reflect perceptions but do not reveal how participants prioritize them. Further research with qualitative methods is needed to explore the significance of these experiences from CA\u2019s perspective.<\/span><\/p>\nAcross all age groups, many participants reported that there were limited or insufficient activities available in the waiting area which aligns with previous research suggesting that environmental factors play a role in children\u2019s experience of healthcare \u200b(1,18)\u200b. For younger children, play areas and creative activities, like drawing or building with Lego, can help reduce anxiety, while adolescents prefer vibrant spaces with music and colorful decor, and minimal interaction with younger children \u200b(1,18)\u200b. <\/span>These preferences reinforce the need for more adolescent-friendly designs that cater to their unique needs, beyond environments designed solely for younger children.<\/span> Moreover, sterile or clinical settings can contribute to feelings of insecurity, whereas a homely atmosphere may provide a greater sense of safety \u200b(19,20)\u200b.<\/span> Interactive distractions like installations in waiting areas could also help alleviate stress during long waiting periods \u200b(19)\u200b.<\/span><\/p>\nIn addition to environmental factors, the study revealed that while adolescents generally experienced the clinic staff as attentive and understanding, about half of adolescents reported not feeling encouraged to ask questions. This is concerning, as involvement in treatment discussions is vital for fostering a sense of control and understanding (21,22). Enhancing the ways in which healthcare professionals engage adolescents in their care is essential for improving their overall experience and satisfaction particularly during transition from pediatric to adult care. Adequate support during this critical phase can foster independence and confidence (23). Conversely, poor preparation for this shift can lead to increased dependence on parents and heightened anxiety.<\/span><\/p>\nOur findings indicate that the proportion of adolescents unaware of their transfer increased with age, underscoring the need for better communication and support during the transition. Healthcare professionals should assess adolescents’ readiness for transition and ensure that both they and their parents are well-informed about the changes ahead (23\u201325). Furthermore the low occurrence of split visits indicates a potential for improving the involvement of adolescents in their treatment.<\/span><\/p>\nBy expanding access to split visits, healthcare providers can better support adolescents\u2019 wish to take an active role in their care, thereby enhancing their sense of control over health outcomes (21,22). Transitioning from pediatric to adult care is another critical phase. Adequate support during this period can foster independence and confidence \u200b(23)\u200b. Conversely, poor preparation for this shift can lead to increased dependence on parents and heightened anxiety. Our findings indicate that the proportion of adolescents unaware of their transfer increased with age, underscoring the need for better communication and support during the transition. Healthcare professionals should assess adolescents’ readiness for transition and ensure that both they and their parents are well-informed about the changes ahead (23\u201325).<\/span><\/p>\nCommunication remains essential. Adolescents over 14 generally demonstrated a better understanding of the information provided compared to younger CA, suggesting that those aged 8-14 face difficulties in fully understanding health information. This gap in comprehension can result in feelings of exclusion from the decision-making process \u200b(21)\u200b. Training healthcare professionals to engage more effectively with CA could improve their overall experience and ensure better communication (1,24\u201326) .<\/span><\/p>\nRecognition and continuity of care were also identified as vital factors influencing adolescents’ experiences \u200b(23,24)\u200b. Establishing consistent relationships with healthcare providers fosters trust and comfort, which is particularly important for long-term care. Adolescents who feel recognized and understood are more likely to engage positively with their healthcare team and adhere to treatment protocols. <\/span>One area for improvement identified in the study is the implementation of the PREM “Help us get better”. The manual process of data entry is time-consuming and resource-intensive \u200b(14)\u200b. Studies have shown that electronic surveys may yield higher response rates and more comprehensive feedback\u200b(27)\u200b. Involving CA in the design of such a platform would ensure that it meets their needs and preferences. However, previous research has also shown that children value having a physical leaflet (14), suggesting that a combination of digital and physical approaches may be most effective.<\/span><\/p>\nTo improve data collection and maximize participation, it is essential to provide clear guidance during survey completion. Studies have shown that self-administered questionnaires completed without assistance often result in lower response and completion rates, as well as a higher risk of errors and missing data (28) . Our findings support this pattern, as several questionnaires were excluded due to mismatched age or incomplete responses, particularly when CA were solely responsible for selecting the correct PREM version. <\/span>The observed issues are likely linked to the method of administration rather than the design of the questionnaire itself. Exclusions of incomplete or incorrect responses not only reduce the representativeness of the sample but may also introduce systematic bias if certain groups are more prone to make mistakes or fail to complete the survey correctly. Ensuring high-quality data collection is crucial for the validity and reliability of PREM findings.<\/span><\/p>\nFuture studies should consider providing more structured support during questionnaire administration and ensuring a more standardized approach to the distribution process across clinical settings. This would help to reduce errors and improve the completeness of the data, making the findings more generalizable. <\/span>Cultural factors also shape CA\u2019s healthcare experiences. Future research should explore how these cultural influences better tailor PREMs to diverse populations (7,29). Direct involvement of CA in satisfaction studies can offer a more nuanced understanding of their needs and preferences \u200b(8,9)\u200b.<\/span><\/p>\n
![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/01\/Illlustration.png?resize=700%2C215&quality=80&ssl=1\")
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