Service-user participation

A common view of PROMS is that devising a symptom questionnaire that is rated by the service user is sufficient to capture their ‘point of view’. But this approach will not necessarily capture the aspects of health that people consider important, nor their relative value. In a previous editorial in the British Journal of Psychiatry, Rachel PerkinsReference Perkins² examined the relative priority of service-user and clinician views of mental health services, concluding that outcome measures need to be designed in collaboration with patients and noted that ‘surely it is time both systematically to ascertain users’ goals and accord them the status currently enjoyed by the priorities of clinicians?’.Reference Perkins² Has anything changed in the past 16 years? The emphasis on the patients’ view and involvement in outcome design is not new, but has been more recently stressed in physical medicineReference Nelson, Eftimovska, Lind, Hager, Wasson and Lindblad³ and in research studies.Reference Crawford, Robotham, Thana, Patterson, Weaver and Barber⁴ Generally, the patients' perspective has been neglected in the evaluation of treatment outcomes for mental health conditions, but this may be changing. Trujols et al,Reference Trujols, Portella, Iraurgi, Campins, Siñol and Pérez De Los Cobos⁵ accepting that PROMs should be self-rated, classified them according to whether they are developed by patients; developed with patient participation; developed to reflect patient values; or are patient-irrelevant. Patient-generated measures have been successfully developed and usedReference Rose, Evans, Sweeney and Wykes⁶ and research funders increasingly specify that service users are involved in the design and execution of research projects.Reference Patterson, Trite and Weaver^7, Reference Ennis and Wykes⁸ The Recovering Quality of Life (ReQoL), in this issue, is an example of a patient-centred/patient-reported outcome measure.Reference Keetharuth, Brazier, Connell, Bjorner, Carlton and Buck⁹

Involving service users in their own care and in research practice has been increasingly stressed in recent years, evolving from a passive role in participation to a more active role incorporating co-production. Service users are increasingly involved in mental health research and in the UK the service-user research workforce is diverse, mature and highly skilled.Reference Patterson, Trite and Weaver⁷ This involvement not only gives personal benefits to those involved, but improves the recruitment rates in the associated studies.Reference Ennis and Wykes⁸

The development of outcome measures with patient input is consistent with bioethical principles and the development of improved content validity. The use of PROMS may improve communication and decision-making between clinicians and patients, and satisfaction with care.Reference Perkins²

What domains to assess?

Using purely symptom domains for a mental health PROM is insufficient to capture the wider range of outcomes valued by service users.Reference Trujols, Portella, Iraurgi, Campins, Siñol and Pérez De Los Cobos⁵ Commonly identified from personal accounts of service users' own recovery are factors relating to hope, control and opportunity and a recent systematic review summarised these under the acronym CHIME (Connectedness, Hope, Identity, Meaning, Empowerment).Reference Leamy, Bird, Le Boutillier, Williams and Slade¹⁰ These factors are consistent with the definition of personal recovery, which relates to the process through which people find ways of living meaningful lives with or without ongoing symptoms of their condition. A review of current measures of personal recovery, identified 13 possible PROMS, one of which (the Questionnaire about the Process of Recovery – QPR) covers the CHIME framework and none of which demonstrated all the psychometric properties evaluated.Reference Shanks, Williams, Leamy, Bird, Le Boutillier and Slade¹¹ None of the 13 measures could be unequivocally recommended by the reviewers. It seems that although there are many existing measures of personal recovery, many of which are person-centred, none yet meet the rigorous standards for psychometric quality.

The ReQoL casts a new light on the development of a recovery-orientated PROM.Reference Keetharuth, Brazier, Connell, Bjorner, Carlton and Buck⁹ It is based on previous work examining the quality-of-life domains important to people with mental health conditions, which were independently found to be consistent with the CHIME framework and highlighted the additional importance of well-being/ill-being and physical health. The ReQoL also addresses a need to provide a quality-of-life measure for people with mental health conditions following criticism of the appropriateness of the existing generic measures (e.g. EuroQol-5D and Short Form-6D) in these conditions. In addition, the ReQoL has the potential to be used in the economic evaluation of mental health services.

Routine use in mental health services

Much has been made of the potential of PROMs to improve care and decision-making in the NHS,Reference Perkins² but the collection and analysis of routine data remains an important challenge. Importantly, the ReQoL is short (10 or 20 self-report items), which may help minimise the time and costs of collection. Using the ReQoL alongside a patient- reported experience measure; an indicator of the achievement of socially valued goals such as secure housing and valued work; and the achievement of individual recovery goals may help to provide a more complete picture of the quality and outcomes of mental health services.