ePROMs are Best Used Alongside ‘A High-Quality Conversation’ as Part of a Therapeutic Relationship. A Qualitative Study of Children with Life-Altering Skin Conditions

Abstract

Purpose

The benefits and barriers of using patient-reported outcome measures (PROMs) in routine clinical practice have been examined extensively, but there has been limited in-depth exploration of the experience of PROMs by stakeholders and consumers. This study sought to understand the experiences of children with life-altering skin conditions, their caregivers and treating health professionals regarding the routine use of electronic PROMs.

Methods

Using interpretive description, data were gathered through qualitative interviews and researcher observations in two outpatient clinics within a major metropolitan paediatric hospital. In total, 48 interviews were conducted with children (aged 11–16 years) attending burn scar or vascular anomalies clinics, their caregivers (children of all ages) and treating health professionals.

Results

The therapeutic relationship was a central organising concept and crucial for providing person-centred care. Within the therapeutic relationship, ePROMs were used to prioritise where to start alongside a high-quality conversation. Study themes identified were shaping (or not shaping) care, taking a considered approach to the use of ePROMs, and aligning values and priorities with the everyday reality. ePROMs did not shape care or capture the priorities of all children and caregivers. A spectrum of sentiment from negative to positive was expressed by families regarding the routine use of ePROMs, differing to the predominantly positive sentiment by health professionals.

Conclusions

ePROMs should be used alongside high-quality conversations to assist in eliciting, understanding and evaluating what matters to children and caregivers but must be used within a therapeutic relationship.

Supplementary Information

The online version contains supplementary material available at 10.1007/s40271-025-00785-z.

Key Points for Decision Makers

ePROMs should be used alongside high-quality conversations as part of a therapeutic relationship between children, their caregivers and treating health professionals.

ePROMs did not shape care or capture the priorities of all children or their caregivers.

The tailored use of ePROMs by treating health professionals may best support patients.

Introduction

The use of patient-reported outcome measures (PROMs) in the routine care of patients has been proposed as being therapeutic, by amplifying the voices of patients and caregivers, identifying their need for follow-up and having the potential to improve shared decision-making between patients and health professionals [1–5]. In children with chronic conditions, a systematic review identified that these potentially therapeutic interventions may support better health-related quality of life and communication [3]. Given accelerated advances in technology, the use of electronic patient-reported outcome measures (ePROMs), whereby PROM data are collected using a digital platform or system, may have benefits such as greater time efficiency, cost effectiveness and higher quality data collection [6, 7].

Despite increasing pressure in health services for PROMs to be used routinely and a growing volume of research regarding PROMs, there have been criticisms regarding the development and use of standardised PROMs in this context [8–11]. These criticisms have included predominantly lower level involvement of children and their caregivers as opposed to higher level collaboration or consultation when choosing and developing PROMs [8], questions regarding the ability of PROMs to capture the voices of individual patients [8–10] and evidence indicating that PROMs did not contribute to person-centred care [12]. Critiques of PROMs also highlight concerns due to the theoretical or epistemological underpinnings of PROMs. These underpinnings assume that all people ascribe the same meaning to PROM items, and that complex feelings and experiences can be translated into a score [9, 12]. Thus, PROMs used on their own may miss a patients’ individual story of their illness and what is important to them [9, 13, 14]. Barriers to the use of ePROMs from a patient perspective have included technical difficulties, privacy considerations and poor computer literacy, potentially disadvantaging some patients [6, 15–17]. From a clinical perspective, barriers have included impacts on patient flow in clinical areas and staff burden owing to the assistance patients may need to complete ePROMs [7–19].

Whilst a strong therapeutic relationship with treating health professionals [20, 21] and use of PROMs are both considered key tenants of person-centred care, the connection between the two has received limited attention. The therapeutic relationship involves the dynamic relationship between the patient and the health professional [22–24] and is purported to be particularly important in paediatric healthcare, where the relationship involves the child, their caregiver and the health professional [25, 26]. A meta-ethnography published in 2024 examined the therapeutic relationship in paediatric occupational therapy and highlighted the importance of asking children and caregivers for their perspectives to promote greater communication, facilitate the sharing of power and promote caregiver trust in healthcare providers [27].

In paediatric healthcare, the selection and use of PROMs in routine care has often been ad hoc [28], with a plethora of challenges reported [29]. Furthermore, the potential unintended consequences of PROM use, such as loss of trust for children and caregivers, have rarely been investigated [30]. Given these challenges and the resource-intensive and complex nature of PROM implementation [31], the need for an in-depth exploration of patient and health professional experiences of routinely using PROMs has been advocated [15]. Thus, the aim of the current study was to understand the experiences of children with life-altering skin conditions, their caregivers and treating health professionals regarding the routine use of electronic PROMs. Our research questions for these groups were: How does the routine use of electronic PROMs shape their understanding, care or practice and how are ePROMs best used as part of routine care?

Methods

Study Design

An interpretive description approach was chosen as a pragmatic and theoretically flexible qualitative approach that focuses on exploring clinical questions and forming clinical recommendations for health professionals [32]. Interpretive description values the researcher’s own clinical expertise, with all five researchers (Z.T., M.S., E.H., R.K. and J.K.) bringing experiences of treating children undergoing burn scar rehabilitation or vascular treatment in hospitals. The research process was underpinned by two assumptions. Firstly, that data are socially constructed through interpersonal relationships between people and secondly, that multiple realities and contexts exist related to the experiences of participants [33].

The research question and interview guide were developed by Z.T. and M.S. following an initial review of literature [34], relevant theories and frameworks, and clinical concerns of clinicians in both clinics, consistent with interpretive description [32]. Parts of the interview guide (Online Resource 1) were theoretically informed, with the Consolidated Framework for Implementation Research (CFIR) (1.0 version) [35] used to understand the influence of multiple levels of health systems. The interview guide was used flexibly with prompts used to guide conversations and questions added during concurrent analysis and data collection, to follow lines of inquiry as part of theoretical sampling [36].

Researcher Positioning

The researchers articulated their positioning at the outset of the study and reflected upon this throughout the research process to account for any potential biases (Online Resource 2).

Study Context

The study took place from November 2019 to August 2021 as part of a broader study that sought to evaluate the effectiveness and implementation of ePROMs [34]. Prior to the routine implementation of ePROMs, paper-based PROMs were administered routinely to approximately 40% of participants to assess the impact of burn scarring on children’s health-related quality of life (personal communication, Megan Simons, 9 July 2025). No PROMs were routinely administered to children with infantile haemangiomas, a vascular anomaly, in the vascular anomalies clinic prior to or during the study. Children and their caregivers were recruited through two clinics, the vascular anomalies clinic and burns scar outpatient service at the Queensland Children’s Hospital in Brisbane, Australia; the only children’s hospital in the state of Queensland providing services across Queensland and northern New South Wales. Children attending the vascular anomalies clinic were routinely seen by a medical specialist and a nurse who attended all clinics. They could, however, also be seen by an occupational therapist and other members of the multidisciplinary team if referred to those team members. Children attending the burns scar outpatient service were seen by occupational therapists and therapy assistants.

The types of treatments received by children with vascular anomalies during the study period differed to those provided to children with burn scars. Children with infantile haemangiomas were routinely prescribed medication (such as propranolol) to help reduce the severity and size of the skin condition and decrease pain. Children with burn scars could be treated with a range of different scar management interventions, such as silicone gels, pressure garments, splints, activities to stretch scarring or education and prevention advice. Paediatric surgeons may be consulted to consider invasive scar treatments such as microneedling, laser or surgery to reduce or manage burn scars or visible differences as part of broader services by the burns centre.

Interviews in the current study were carried out during two phases of the broader study: firstly, when ePROMs were being selected for routine use, during which no vascular clinic participants and few burn scar participants were routinely administered PROMs; and secondly, following commencement of the routine use of ePROMs supported by study personnel as part of a broader study. During this second period, all caregiver and child interview participants had been involved in the completion and use of the ePROMs in routine practice. For children with burn scars and/or their caregivers, the ePROMs administered to all participants at up to three timepoints were the Brisbane Burn Scar Impact Profile [37, 38] and the CARe parent scales [39]. For children with infantile haemangiomas, the ePROMs administered at up to three timepoints were the Hemangioma Family Burden questionnaire [40] and the Infantile Hemangioma Quality of Life Scale [41]. Children and/ or caregivers in both clinics were also asked to complete the Pediatric Quality of Life Inventory infant or generic scales [42, 43] and an open-ended text box to report child and caregiver priorities for care at up to three timepoints. Details regarding the timing of delivery of these ePROMs delivered in routine practice have been reported elsewhere [34]. The process of routine ePROM use involved all caregivers being emailed a link for them or their child to complete the ePROMs prior to appointments, scoring ePROMs in real-time, ePROM results being stored in the child’s electronic medical record and printed graphical displays of ePROMs being given to some clinicians prior to consultations.

Participants and Procedures

Participants eligible for inclusion were children with life-altering skin conditions (aged 8–16 years) receiving treatment in a vascular anomalies or burns scar outpatient clinic at the Queensland Children’s Hospital, caregivers of these children of all ages and healthcare workers (including staff working in the vascular anomalies or burns scar clinics such as allied health, medical professionals, nursing staff and hospital managers or executives). Field notes of observations and interactions with children and caregivers who did not engage with or complete ePROMs were also recorded. These field notes were saved without identifying details of the people involved such as name or professional role. Field notes included observations and interactions with those who did not engage with or complete ePROMs during this period, which were recorded without identifying details. Managers and executives were included as they may support the use of PROMs and development of strategic priorities related to these measures within hospitals. Convenience sampling was used initially to identify and recruit participants followed by purposive and theoretical sampling [36].

Data Collection and Analysis

Data collection occurred between December 2019 and August 2021. Data included observations, field notes and interviews collected by two members of the research team (Z.T. and E.H.); researchers independent of treating teams in the study setting. Interviews were conducted in-person, by phone and virtually using Microsoft Teams or Zoom on the basis of the participant’s preference. More than one interview was conducted with some participants to capture viewpoints over time. Interviews were audio-recorded and transcribed verbatim by the research team or an external transcription company. NVivo 14, a qualitative data analysis software, and Microsoft Word (Microsoft 365) were used to code and analyse the data and generate an analytical template.

Tentative themes were developed as data were coded, with connections both within and across interview data identified. Themes were then refined as data collection and analysis occurred. Constant comparative analysis (including going back and forth between data collection and analysis) [44] was used to enable the research team to follow important lines of inquiry and to further explore and develop tentative themes arising from the data.

Analysis involved reading and coding all transcripts (J.K.), listening to audio-recordings of transcripts up to several times (J.K. and Z.T.) and taking reflexive notes throughout data collection and analysis where appropriate (J.K., Z.T., M.S., E.H.). Two researchers (J.K. and M.S. or Z.T.) coded the same five transcripts independently to identify patterns and then met to discuss similarities and differences after which they returned to the data as part of constant comparative analysis.

Credibility and Quality in Interpretive Description

The researchers of the current study ceased data collection and analysis when they were satisfied that the codes and priorities within the analytical template were sufficiently understood, aligned with credibility in interpretive description [32, 45]. Quality was based on how justifiable and relevant the findings were considered to be for PROM users in hospital settings [33]. At the study outset and throughout data collection and analysis, the research team accounted for personal biases based on their own views and lived experiences. Reflexive journaling and research team meetings were used to discuss arising themes within the analytical template as part of ensuring credibility of the results and to transparently develop the analytic logic as advocated by Thorne [32]. Consistent with the findings from interpretive description, these were reflected back to new participants where appropriate [33] to see whether their experiences resonated with earlier participants or whether they had differing views, particularly in later interviews.

Results

A total of 48 interviews were conducted involving children with burn scars and their caregivers (n = 24), caregivers of children with infantile haemangiomas (n = 12) and health professionals (n = 12). Five health professionals were interviewed twice. Children with burns who participated had a median age of 12 years and were either male (n = 2) or female (n = 6). The majority of caregivers of children with burns who participated were of Anglo/European or New Zealand Maori ethnicity (n = 10). Caregivers of children with burns who were interviewed were predominantly female (n = 15). Children with infantile haemangiomas were predominantly female (n = 10), as were their caregivers who were interviewed (n = 9), and children were mostly of Anglo European ethnicity (n = 10). Health professionals interviewed included occupational therapists (n = 6) and surgeons, other medical specialists or health professionals (n = 6). See Online Resource 3 for further demographic information of the participants interviewed. Interviews ranged in length from 7 min to 1 h 36 min, with the shortest interview with a child.

The Therapeutic Relationship—A Central Organising Concept

Interwoven through the experiences of participants interviewed and observations recorded was the therapeutic relationship between families and health professionals as a crucial part of supporting person-centred care. Figure 1 shows a visual representation of the findings, and Online Resource 4 provides the analytical template coding and example quotes. The use of ePROMs as a tool in the context of a therapeutic relationship helped ensure child and family priorities were at the centre of the care they received. Health professionals valued having the results of the ePROMs to use during consultations, as a conversation starter or to enable them to target their questioning in line with the child’s or caregiver’s concerns and priorities.

‘It’s like, well, you come up with a score and it’s like, yes, the score, the score’s there, which is an important part of it. But in, if I ask, actual fact the way we use it is not score based. We don’t walk in and say, right, you’re a three out of five for this one, I’m going to manage that. It’s more those conversation starters to get kids talking about things that one – sometimes if I ask them cold turkey, they actually shy away from, or don’t give me the real answer’. (Interview 13, health professional)

Fig. 1.

A visual representation of the study themes and the therapeutic relationship as a central organising concept. Figure designed using ©[@infografity] via Canva.com

A conversation of quality initiated by a health professional, which we term a ‘high-quality conversation’, was essential in conjunction with the use of ePROMs. A high-quality conversation was discussed in terms of talking to children and caregivers to judge their level of comfort with completing an ePROM, informing them properly about the child’s condition, and health professionals being present in conversations between families and other health professionals to advocate on their behalf on the basis of what they reported in the ePROM. These types of conversations were considered part of standard practice for some health professionals. On the contrary, others highlighted that these conversations went beyond what was considered standard in practice. Still, others described that despite trying their hardest to have high-quality conversations with children and caregivers, these conversations sometimes did not happen owing to processes beyond their control.

‘Whereas yes, if they’re advocated for based on what they’ve reported and you know. So – and it’s, it’s a good question because although we try our hardest to get back to those families, sometimes the way clinic goes, you miss it. And then it’s like, oh, they’ve been booked for something that they, they didn’t want to agree to and you know, things like that’. (Interview 3, health professional)

Reasons raised as to why these conversations were important were to alleviate child and caregiver distress and ensure child and caregiver comfort, concerns and priorities were focused upon. For example, caregivers of children with vascular conditions were particularly concerned about accessing a medical specialist and talking to their specialist at their first specialist consultation, as they had often experienced a long journey of searching for answers or receiving incorrect advice prior to being referred to or waiting to see the specialist at the children’s hospital. Those caregivers felt that the content of an ePROM was not a high priority for them at this early stage of their child’s treatment. Rather, reducing the time they had to wait to access a specialist and having a high-quality conversation with their specialist at their first appointment was spoken of by both caregivers and health professionals alike as being able to alleviate caregiver concern and distress.

The usefulness of the conversation following the completion of ePROMs relied on health professionals being proactive and raising the concerns indicated in the ePROMs, as families rarely raised things themselves during consultations.

‘No, because I’m a person that will, probably, think about it after and say, why didn’t I have the mouth to, actually, speak up. Because, I think, you know, sometimes I’m trying to keep whoever I’m in presence with happier and not voice that opinion. Whereas if it’s something that I can do online, I’m more liable to voice my opinion because I’m feeling, like, I can, actually, say something without someone saying, “Wow,” and not jousting with me or making me feel like my answer mightn’t be correct’. (Interview 15, caregiver of child with burns)

In addition to the use of ePROMs to inform a high-quality conversation (together forming the therapeutic relationship), there were three underpinning study themes: shaping (or not shaping care), taking a thoughtful approach to the use of ePROMs, and aligning values and priorities with the everyday reality.

Shaping (or Not Shaping) Care

In some situations the use of ePROMs had the potential to shape care, but in other situations, it did not. For example, when concerns were not raised by children or caregivers during a consultation but were reported in the ePROMs, health professionals, particularly occupational therapists in the study setting, were able to refer back to the ePROMs to guide the conversation towards the reported child and caregiver priorities.

‘So then if I say, tell me about how you’re doing with the look of the scar, they’ll say, oh fine. It’s like, oh, it’s interesting ‘cause in your BBSIP [ePROM] you have flagged that that’s actually a concern area, and so it kind of opens it up’. (Interview 13, health professional)

Having a person who was an advocate for the family was expressed as a mechanism by which issues identified on the ePROM could be raised within clinical encounters or formal consultations and therefore shape care. Occupational therapists in burn scar clinics were described by both health professionals and caregivers as often taking on this role in raising issues with doctors. Caregivers also discussed the possibility of bringing their own advocates to consultations to take on this role.

Conversely, an example of when ePROMs did not shape care was discussed by a health professional.

‘I think – what makes me feel really uncomfortable at the moment is that someone just gets their favourite new toy, everyone then y’know gets offered this favourite new toy, but really like, I’ve seen so many PROMs being done where nothing’s of concern and next thing they’re booked in for elective surgery. And you’re like but what for’. (Interview 3, health professional)

Mental Processing: Encompassing Understanding, Sense-Making and Reflection

Underpinning the therapeutic relationship was the use of ePROMs in the context of a high-quality conversation, to support children’s and caregivers’ mental processing. This encompassed understanding, sense-making and reflection by children and families on the child’s progress.

‘So, then that might be a good flag for a parent, and you know I’ve heard parents describe using these tools as they’re kind of used as a bit of check in on how they’re going as well? Um, so they, you know, they – some of them have definitely reported that they like filling them in ‘cos they just, gives them a bit of a litmus test on how they’re going. And then maybe they might, so maybe they’re still under the cutoff score, but they’ve gone from a 1 to a 6, and they can go, yeah I am feeling a lot more stretched or stressed or…and it probably is having some sort of impact and you know might just start a conversation’. (Interview 4, health professional)

Particularly for caregivers of children with haemangiomas who had often not received accurate information about their child’s condition or treatment from healthcare providers outside the hospital, a conversation as part of building a therapeutic relationship to support their understanding and sense-making at their first appointment was important. For most, but not all caregivers and health professionals, this was spoken of as needing to come before use of an ePROM.

‘Course when they ulcerate that’s a distressing time, ‘cos they’re – they’re painful, but the majority of them, sort of, are fine, and the parents are actually fine, as soon as you tell them, you know, what’s – what’s gonna happen, they’re usually fine… [ ]. You know, as long as you inform them properly, usually, ‘cos they’ve been told all sorts of awful things by other people, you – when you inform them properly, they’re absolutely fine. And they’re actually pretty good at turning up for their appointments, um, because… well…‘cos I think, you know, that does…. It is important to them, but also something they know that we can actually do something about’. (Interview 4, health professional)

Taking a Considered Approach to the Use of ePROMs

A considered approach was discussed as important for both families and health professionals prior to implementing ePROMs routinely into clinical practice. Caregivers also spoke of how they gave careful thought to the information they provided to health professionals (via individual ePROM items), and both caregivers and health professionals reported needing to weigh up unintended negative consequences of ePROMs versus any potential benefits for their child and family.

‘So, what would you use this for though? ‘Cause I guess, like, slight bubble paranoias like, oh, do you wanna see if I’m, like, a fit parent [laugh]?’ (Interview 7, caregiver of child with haemangioma)

‘See these are questions my psychologist and I deal with, so I would be questioning why you need to know all that. Just on a regular…Do you know what I? Do you know what I mean? Like it’s sort of, seems like why, why do you need to know that?’. (Interview 7, caregiver of child with haemangioma)

Part of this approach included health professionals giving children and caregivers clear information regarding the purpose of the ePROM and how their information would be used, to maintain and not erode trust between families and health professionals and/or the hospital system. One mother also appreciated the researcher introducing themselves and telling her what the ePROM was about prior to administration.

Underlying the need for a considered approach was the spectrum of experiences of children and caregivers using ePROMs in the current study. Whilst some children and caregivers found the use of ePROMs a meaningful part of their experience, many caregivers interviewed felt neutral towards the use of ePROMs in the future. Some caregivers voiced negative views, for example, one felt that being asked to complete ePROMs could cause them distress if questions were confronting, which would then lead to them not returning to the hospital for future appointments for their child. Others wondered whether listed symptoms or impacts not experienced by their child would make them worry about the future health of their child. For example, one mother expressed concern that an item asking about pain experienced by children with infantile haemangiomas made her worry that her baby could be experiencing pain without her realising it. Another mother indicated that the wording of a PROM question that was being considered for routine administration made her ‘feel sick’. Given other negative comments from participants regarding that item, despite it being part of a validated PROM, the research team removed that PROM item for further consideration for future routine use.

‘And like – I don’t like the idea – like the – I guess, this one [ePROM item on being embarrassed about how she looks] kind of feels like it’s suggesting there’s something wrong with her and that makes me feel sick…which I – yeah, no, she’s perfect [laughs]’. (Interview 3, caregiver of child with haemangioma)

The majority of fathers participating in this and the broader study who were attending burn scar clinics indicated that they were happy to complete the ePROMs for the study but would not choose to do so outside of the study. Several participants, including mothers and fathers, discussed their dislike of completing ePROMs more than once. If they had to repeat the ePROM, a targeted set of questions based on previously identified issues was preferred.

Caregivers reported that ePROMs were often long and repetitive and challenging to complete in some situations and environments such as prior to a surgical procedure for their child. Not all caregivers had the time or capacity to complete ePROMs at home, so they often needed to complete them in the clinic waiting room. Some found this difficult as they preferred thinking about questions to ask their health professionals, and/or being able to sit quietly without distraction as a means of reducing the distress (or anticipated distress) they or their child was experiencing (or likely to experience) in the hospital environment.

Aligning Values and Priorities with the Everyday Reality

Most health professionals wanted to provide person-centred care, of which ePROMs were considered a part. However, many experienced challenges and tensions in trying to align the everyday reality of working in resource-constrained environments with their own values, professional lens and discipline-specific or organisational priorities (that included the use of PROMs in vision or mission statements). Within the broader context of the child and family journey prior to and during their initial receipt of hospital care, ePROMs were not viewed as the panacea for person-centred care. Other priorities eclipsed use of the chosen ePROMs at certain timepoints in the child and family journey through the system. These other priorities included accessing support and advice prior to being able to get a consultation with a specialist, educating general practitioners and having processes to connect with general practitioners and schools to assist with transitions to or from hospital and back to daycare or school. Getting the opinion of a healthcare provider and having an in-depth conversation about the child’s condition with specialists at the first appointment were also priorities by caregivers of children with infantile haemangiomas.

Most health professionals reported valuing PROMs, including the use of measures with sound psychometric properties and wanting to use them to evaluate whether or not their treatments were improving outcomes for children. However, some health professionals expressed concern over not being able to respond appropriately if social emotional issues or concerns were raised that were perceived as beyond their professional scope.

‘You know, I – I, you know yesterday I did a clinic, uh, well I did three clinics yesterday, you know I – I can easily see 70 patients and you know, 70, 75 patients on a Monday, I don’t have time to sort out sadness, you know?’ (Interview 4, health professional)

Some health professionals felt pressure from an executive level to provide person-centred care but questioned their ability to do so given the time and resource constraints in which they were operating.

‘I feel patient-centred is one of their outcomes, but it’s sometimes quite hard when you’ve got very little time to do that and such incredible numbers plus financial, where they keep taking funding for the staffing. I think it’s very difficult to do those things. And to be that patient-centred when you’ve got those other things to come through. But those other pressures. So, I think what they say versus the current environment is a little bit different. And I find their values perhaps are a bit misaligned in that regard’. (Interview 16, health professional)

There were practical challenges identified by children, caregivers and health professionals impacting their engagement with ePROMs as part of the everyday reality. Health professionals acknowledged the challenge of finding the balance between PROMs that were comprehensive but also not too long and time consuming for children and caregivers. A lack of time, resources and formal pathways to address concerns, especially caregiver or family coping, was reported to be frustrating, with some health professionals questioning the purpose of collecting ePROMs if the items and scores were not used or responded to.

Discussion

The current study has highlighted diverse experiences of engaging with ePROMs for children with life-altering skin conditions, their caregivers and health professionals providing care. For all participants, the importance of a high-quality conversation and advocacy between families and health professionals within the context of a therapeutic relationship underpinned the meaningful use of ePROMs. For health professionals, ePROMs offered benefits when used as a tool for prioritising where to start. Children and families valued ePROMs to make sense of their condition and facilitate reflection, but for some, a high-quality conversation eclipsed the use of ePROMs. Notably, many caregivers interviewed reported feeling neutral towards the future use of ePROMs or reported priorities important to them were not captured by the ePROMs administered, raising questions about the value of routinely using ePROMs alone with these children and caregivers. This highlights the importance of high-quality conversations to ensure the voice of what matters to children and caregivers is captured.

With respect to how ePROMs seemed to work for caregivers, the use of ePROMs frequently provided a starting point for targeted communication but relied on the health professionals discussing the findings with children and caregivers during consultations, otherwise caregivers often did not raise concerns. This aligns with literature highlighting the importance of health professionals discussing PROM results and giving feedback during consultations to potentially improve communication and patient engagement [46]. In the current study this included ePROMs sometimes facilitating better communication between children and healthcare providers and between children and their caregivers. These findings shed light on the gap identified in Greenhalgh et al.’s realist review of primary care, mental health and cancer care of understanding how PROMs impact communication and patient–clinician relationships [47].

Whilst the current study found potential value in the use of ePROMs when used alongside a high-quality conversation, the importance of developing and maintaining a positive therapeutic relationship between families and health professionals was crucial. Caregivers highly valued face-to-face consultations with health professionals, and health professionals themselves observed that a conversation with families led by a trusted health professional may elicit information on the highest priorities for children and families that were not identified by the standardised items or responses in the chosen ePROMs. The importance of a strong relationship between the child and health professional to support person-centred care has likewise been demonstrated in research exploring children and young people’s engagement with mental health clinicians [48–50]. A qualitative study also highlighted the strength of therapeutic use of self, demonstrating that the relationship between nursing staff and young people or carers with lived experience of mental health care, is a crucial part of the treatment itself [21]. Whilst the findings of a mixed-methods study suggested that PROMs may support shared decision-making and children receiving the most appropriate treatment [28], the current study found little evidence that the use of ePROMs contributed to shared decision-making. Instead, it appeared to be the conversations between families and health professionals and advocacy by some health professionals, within the bounds of the therapeutic relationship, that helped support prioritisation of the most meaningful individual child and caregiver concerns within clinical encounters. The current study findings also suggest that child and caregiver reflection and conversations with a trusted health professional support child and caregiver sense-making, whereby families are provided with the scaffolding needed to make sense of their experiences within the context of the child’s condition. This understanding then supports their engagement with the healthcare system [51, 52].

Whilst many children and caregivers felt neutral towards the use of ePROMs in the current study, some were positive or strongly positive in their sentiment towards ePROMs. In contrast, some caregivers saw the potential for ePROMs to cause distress, worry or impact their engagement with the hospital or outpatient setting. Whilst a focus on the benefits of PROMs seems to have predominated in research to date, including two systematic reviews [53–55], concerns regarding PROMs have been similarly reflected in qualitative studies [30, 56]. These studies, which reported concerns, have identified that some patients feel PROMs focus too much on negative symptoms, or make them feel uncomfortable when sensitive items are presented, or rejected by health professionals or the service when their concerns reported on the PROM are not responded to [30, 56]. Potential unintended negative consequences arising from the use of ePROMs require further investigation beyond the study context.

Some health professionals in the current study reported concerns that issues raised in the PROMs were not within their scope of practice, which was connected to feelings of discomfort regarding the use of PROMs in standard care. A lack of formal referral pathways or resources to refer to when issues are raised by children and caregivers through PROMs was of concern for health professionals in the current study and has been similarly echoed in previous research [28, 30].

Clinical Considerations

This study found that the use of PROMs must be contextualised and be considered as one part of the bigger personalisation puzzle in being able to provide individualised person-centred care. The relative advantage of PROM administration and feedback of the scores was realised most when combined with strategies supporting communication and interaction with health professionals (e.g. a high-quality conversation and resourcing to support health professionals to administer the PROMs). Face-to-face communication to develop trust between caregivers and health professionals and foster honest and open conversation was vital to identify priorities that matter for individual children and their caregivers, regardless of ePROM content and/or responses.

Our findings recognise and elevate the status of a high-quality conversation with patients as part of a therapeutic relationship, particularly those conducted face-to-face, although it should be noted that we did not explore telehealth or phone consultations. Within the therapeutic relationship, the tailored use of PROMs including clinical reasoning may best support patients and take advantage of the potential benefits of PROMs, whilst mitigating any potential unintended negative consequences of PROMs. On the basis of the findings, this may require a conversation with families about PROMs, to enable the health professional to judge the appropriateness of PROM use in individual families and to identify where the use of PROMs with children or their caregivers may not be suitable given the risk of increasing the burden on a family or creating unintended distress. Revisiting that conversation at critical timepoints, such as a change in the severity of the condition or when families transition back to daycare or school, may also be important.

Whilst the importance of natural, unstructured conversations was discussed as being of prime importance by our participants, there may be a role for lightly structured conversational or narrative qualitative methods (such as contextual interviewing, photo elicitation, implementation diaries or life writing), some of which have been implemented by our team and by others [9, 57]. Methods such as contextual interviewing may be more appropriate than the implementation of ePROMs for some children and families, enabling a greater understanding of the contextual considerations and priorities for children and their caregivers whilst further developing the therapeutic relationship [58]. Contextual interviewing provides a clinical framework to gather information using a semi-structured approach and enables this information to be used in real-time to inform treatment decisions and optimise patient-centred care [58]. The study findings support the use of lightly structured conversations to provide contextual information such as the purpose of the ePROM, what the ePROM is about and how ePROM information will be used, prior to the administration of ePROMs.

Involving children and caregivers in the process of developing, choosing and implementing ePROMs continues to be an important consideration for future research studies. The current study strongly reinforces the benefits of early feedback from children and caregivers prior to selecting and implementing PROMs into routine practice to reduce the risk of content that may cause emotional distress or be perceived as a burden without benefit. Child and family engagement is inconsistently integrated into the selection and design of PROMs, with a systematic review examining the engagement of children and caregivers when choosing patient-reported outcomes demonstrating often limited engagement with children and families in the development or implementation of patient-reported outcome measures [8]. On the basis of our study findings, the lack of child and family involvement in these processes may negatively influence implementation, heightening the risk of no benefit or unintended negative consequences. In the development and implementation of PROMs, participatory approaches that permit an understanding of priorities that sit outside of the targeted concept may be more meaningful to families than the targeted concepts in ePROMs, particularly at certain timepoints.

Future Research

The characteristics of people and conditions that best support PROM delivery, reflection and use of the ePROM data clinically should be further explored in future research studies including the study population. For example, fathers in the study sample appeared to have distinct differences to mothers in their preferences, with fathers typically not seeming to value the ePROMs, although the number of fathers who participated was small. Differences in perceptions between those with clinical and management roles [59] and between health professionals with greater and lesser years of experience have been identified [60] and may be worth further consideration. For example, healthcare providers with greater years of experience have been found to rely more on their own clinical decision-making rather than use a PROM to capture patient outcomes when compared with less experienced healthcare providers [60]. Other cultural considerations impacting health professional use of and perceptions towards PROMs may be important to understand in the context where PROMs are used routinely [60].

The design of PROMs intended for routine use in practice may need to be reconsidered. For example, our findings suggest that an in-depth understanding of topics that align best with starting a conversation or developing the therapeutic relationship should guide the development of PROMs for this purpose. In terms of theoretical and epistemological underpinnings, mixed-method or narrative approaches that could achieve this differ to the positivist or nomothetic and pragmatic approaches generally used to design and evaluate the implementation of PROMs [15, 61].

Strengths and Limitations of the Current Study

A relatively large number of participants were interviewed to permit diverse representation and in-depth iterative exploration of lines of inquiry. However, it was challenging to capture families from differing cultural backgrounds or those for whom the use of PROMs was difficult owing to social or other reasons. These features, along with other recent research regarding the unintended negative consequences of PROMs [30], support the generalisation of findings to similar study populations and contexts. However, further qualitative research is needed to determine the generalisability of the findings to children and families with other health conditions, other health contexts and families from diverse cultural backgrounds.

Conclusions

This study explored experiences of the routine use of patient-reported outcome measures for children with life-altering skin conditions, their caregivers and health professionals, and has outlined some important clinical considerations. In particular, the importance of the therapeutic relationship between children, caregivers and health professionals and the need for a high-quality conversation alongside the use of ePROMs was highlighted. This can ensure that what matters to children and families is captured in routine practice. The use of PROMs should be contextualised to provide the highest value paediatric healthcare.

Supplementary Information

Below is the link to the electronic supplementary material.

Funding

This work was supported by a Health Services Research grant from the Children’s Hospital Foundation, Brisbane, grant no. 50297.

Declarations

Conflict of interest

Zephanie Tyack, Megan Simons and Roy Kimble contributed to the development of a PROM, the Brisbane Burn Scar Impact Profile (BBSIP), that was used in the study setting prior to the study. The BBSIP was one of several PROMs that were the focus of the broader study this work was part of. This may have had an influence on the positive perspectives of ePROMs at the commencement of the study by these authors. Zephanie Tyack was chair and co-chair of the Child Health Special Interest Group, International Society of Quality of Life during preparation of the study manuscript, which has a strong focus on the development, use and evaluation of PROMs. Work from the broader study was presented online at the International Society for Quality of Life conference and special interest group meetings during the study period. Queensland University of Technology supported Zephanie Tyack’s attendance at the International Society of Quality of Life Research conference financially during analysis of the findings.

Ethics approval

Ethical approval was provided by the Children’s Health Queensland Human Research Ethics Committee (HREC/2019/QCHQ/56290), The University of Queensland (2019002233) and Queensland University of Technology (1900000847). The procedures used in this study adhere to the tenets of the Declaration of Helsinki.

Consent to participate

Written informed consent was obtained from all participants in the current study, except for children under 16 years who had a caregiver provide written informed consent. Children under 16 years provided verbal assent.

Consent to publish

Patients signed informed consent regarding publishing their data. Where quotes from participants were deemed potentially identifiable, despite care being taken to remove all identifying details, participants were asked to provide additional verbal consent for the use of their quotes in the manuscript.

Availability of data and materials

Data may be made available upon reasonable request where that request aligns with the conditions of the original ethical approval. Additional ethical approval may be required to access the data.

Author contributions

Zephanie Tyack, Megan Simons and Roy Kimble contributed to the study conception and design. Material preparation and data collection were performed by Zephanie Tyack and Emma Hartshorn. Data analysis was performed by Zephanie Tyack, Jessica Killey and Megan Simons. The first draft of the manuscript was written by Zephanie Tyack and Jessica Killey, and all authors commented on subsequent versions of the manuscript. All authors read and approved the final manuscript.