Introduction
The routine use of Patient Reported Outcome Measures (PROMs) is recommended by healthcare policy for a range of long-term conditions in the United Kingdom (UK), including services for young people with mental health problems or diabetes (Department of Health
2011,
2012; Royal College of Paediatrics and Child Health
2012). PROMs have been defined elsewhere in this special issue (Edbrooke-Childs et al.
2014). In child mental health services, PROMs are being implemented to measure change in mental health symptoms and functioning (e.g., Revised Children’s Anxiety and Depression Scales: Chorpita et al.
2005) and to measure progress to achieving therapeutic goals (i.e., Goal Based Outcome measure: Law
2011; Wolpert et al.
2012). In child diabetes services, PROMs are being implemented to measure change in general wellbeing (e.g., Pediatric Quality of Life Inventory (PedsQL) Varni et al.
1999; Royal College of Paediatrics and Child Health
2012).
Evidence suggests that the routine use of PROMs may benefit shared treatment decision making between patients and clinicians, service satisfaction, and treatment progress monitoring (Batty et al.
2013; Bickman et al.
2011; De Wit et al.
2006; Skevington and McCrate
2012; Wolpert
2013). On the one hand, research has focussed on the development of PROMs and ensuring they measure salient issues to patients (Skevington and McCrate
2012). On the other hand, there is little research exploring patient and clinician attitudes to PROMs (Batty et al.
2013).
As reported elsewhere in this special issue (de Jong
2014; Douglas et al.
2014; Edbrooke-Childs et al.
2014; Fleming et al.
2014; Mellor-Clark et al.
2014), there are a number of barriers to implementing PROMs, mirrored in qualitative studies with patients and clinicians. Support is indeed needed for services to overcome these barriers and routinely use PROMs. As demonstrated in an audit of a child mental health service, the routine administration of PROMs doubled after one year, with the support of an active learning collaboration (Hall et al.
2013).
Barriers to using PROMs regard three main areas (Badham
2011; Batty et al.
2013; Martin et al.
2011; Moran et al.
2012; Norman et al.
2013; Stasiak et al.
2013).
Firstly, the content and format of measures. This includes their structured format, the focus on problems or deficits, and the inability to capture the complexity of the young person’s experience and context.
Secondly, the process of using measures, as these may be perceived to interfere with therapeutic engagement.
Finally, the outcome of using measures, considering whether data obtained from measures may be more relevant and useful to services than to patients.
A particular issue for the outcome of using measures is that patients may be unwilling to reveal some topics or may feel that PROMs do not capture their concerns and priorities. Furthermore, clinicians may not view problems identified using PROMs as warranting a change in practice or referral because they may be seen as either an inevitable side effect of treatment or, on the contrary, as not being caused by treatment or presenting problems (Greenhalgh
2009; Marshall et al.
2006).
Young people have suggested that the use of PROMs may be encouraged by making measures more convenient and flexible, promoting ‘quick’, ‘simple’, ‘well-explained’, and ‘optional’ measures (Badham
2011, p. 13). How PROMs are used rather than the measures themselves may be a key determinant of attitudes, and young people appear to support PROMs when used after a rapport has been developed with the clinician (Stasiak et al.
2013). Clinicians report concerns around resourcing and a lack of time for and ownership of implementation, some of which may be offset by computerised implementation to ensure timely feedback to clinicians (Batty et al.
2013; Martin et al.
2011; Murphy et al.
2011).
Given the increasing use of PROMs in services for young people (Department of Health
2011,
2012; Royal College of Paediatrics and Child Health
2012), research is required to understand young people’s, parents’, and clinicians’ views on PROMs. In particular, understanding perspectives on the barriers and facilitators to implementing PROMs, and how these may be similar and different across mental and physical healthcare settings, may help inform how to appropriately tailor implementation.
Aims of the Present Research
To the best of our knowledge, no study has explored the similarities and differences in perspectives of patients and clinicians in settings related to long-term mental and physical conditions in young people. To this end, the aim of the present research was to explore the views of young people, parents, and clinicians from child mental health and diabetes services to understand their views on PROMs, the implementation of PROMs, and the barriers to implementation.
Brief Discussion
The aim of the present research was to explore the views of young people, parents, and clinicians from child mental health and diabetes services to understand their views on PROMs, the implementation of PROMs, and the barriers to implementation.
For different reasons, young people, mothers, and clinicians viewed PROMs as having the potential to alter the scope of clinical discussions. On one hand, clinicians reported this as being an opportunity to better tailor care to individual need and to do so from the very start of treatment. On the other hand, young people in mental health services reported concerns that this would alter the pace of clinical discussions, prioritising a focus on treatment at the expense of therapeutic relationship building. Young people and mothers in the diabetes service were concerned about clinical discussions moving away from physical to mental health concerns, bringing with it increased stigma and scrutiny. Young people and mothers from both settings raised concerns about how data obtained from PROMs would be used and what would be safe to reveal using measures. In particular, young people from mental health services were concerned that responses would be used to narrow access to services.
Other potential barriers were information technology and administrative support and the tension between the fixed structure of PROMs and the need to capture the fluidity of patients’ experiences. Still, some clinicians valued the capacity of structured instruments to draw comparisons of outcomes across patient groups, which it was hoped would facilitate service development.
Limitations should be considered when interpreting the findings of the present research. First, the sample was small, and conclusions may not generalise beyond the present sample. Second, participants were recruited using the research team’s professional networks and advertisements, which risk self-selection bias. Finally, interviews with young people with diabetes and their mothers were conduct in dyads, potentially limiting young people’s freedom of expression.
Notwithstanding the above limitations, the present research is the first to explore and triangulate the views of young people, mothers, and clinicians from child mental health and diabetes services to understand their views on PROMs, the implementation of PROMs, and barriers to implementation.
Findings from the present research highlight the need for well-planned and resourced support for PROM implementation, including guidelines to help clinicians know how to administer and interpret PROMs (Devlin and Appleby
2010; Greenhalgh
2009; Greenhalgh et al.
2005; Law
2012). As mentioned by clinicians from both settings, young people and their parents need explanations of the rationale for using PROMs, as they may have a range of concerns about the content, process, and outcome of implementing measures. If clinicians are to use PROMs to guide practice with their patients, they may need to find ways to foster young people’s and parents’ ownership of measures and data. Using PROMs within a shared decision making context may help achieve this (Law
2012; Wolpert
2013).
To do so, clinicians should discuss with young people and parents when to use- and not use-measures. If it is decided to use measures, discussions should explore which areas to focus on in sessions and correspondingly, what measures to use. The potential clinical utility of measures should be considered in terms of monitoring and reviewing treatment progress. Such data obtained from PROMs can be used to look for off track cues so clinicians can discuss with young people and their parents instances when treatment might not be progressing as expected. Action plans can then be devised to try new methods to redress treatment progress, with PROMs used to continue to monitor the impact of changes.
Findings of the present research suggest that young people, mothers, and clinicians might all view PROMs as having the potential to alter the scope of clinical discussions. These alterations need to be carefully discussed with young people and mothers as they may view potential alterations differently to clinicians. Clinicians in the present study viewed PROMs as potentially useful for tailoring care to the needs of the patient from the outset of treatment. However, young people in mental health services were concerned that this may take time away from therapeutic relationship building in the initial stages of treatment. Conversely, young people and their mothers in the diabetes service were concerned that emotional issues raised by PROMs may detract from physical healthcare.
For different reasons, young people, mothers, and clinicians in both mental and physical healthcare viewed PROMs as having the potential to alter the scope of clinical discussions. Before implementing PROMs, clinicians need to be aware of the associated strengths and barriers this may bring, so they can carefully communicate these to the young people and parents in their care.
Acknowledgments
The authors would like to thank the young people, mothers and professionals who took part in the study, and those who helped recruit participants; also members of the Policy Research Unit in the Health of Children, Young People and Families: Terence Stephenson, Catherine Law, Amanda Edwards, Ruth Gilbert, Steve Morris, Russell Viner and Catherine Shaw. The study was funded by the Department of Health Policy Research Programme.