The UK draft NICE guideline on depression in adults was sent out for stakeholder consultation between July and September 2017. The final guideline publication date currently remains āto be confirmedā. This paper sets out key concerns with the methodology employed in the guideline and its impact on recommendations for psychodynamic psychotherapies for complex and persistent depression. The draft largely ignored the subjective experiences and voices of service users, carers and members of the public, using out of date limited evidence of service user and carer experiences. The guideline fails to incorporate what limited qualitative evidence it reviewed into any treatment recommendations. The Guideline Committee created its own method for categorising depression by longevity, severity and complexity. This has resulted in erroneous and unhelpful classifications of research studies under groupings which do not match clinical and service user experiences or US and European approaches, rendering analyses and conclusions unreliable. We also outline instances of incorrect classification of psychodynamic treatments (such as inclusion of non bona fide treatments or exclusion of relevant bona fide treatment studies) which enables the omission of a recommendation for psychodynamic psychotherapy for complex and persistent depression. Depression is often a long-term condition or can become so if immediate care is inadequate; yet the draft recommendations are all made on the basis of short-term outcome data (with often less than eight weeks between baseline and outcome). NICE guidelines for long-term physical conditions would treat this evidence as inadequate. Finally, the draft guideline used the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) system of assessing methodological quality in such a way as to produce a systematic bias in favour of drug trials, selectively omitting trial data with long-term follow-up points and those which used non-symptom outcomes. Herein, we consider the increasingly evident limitations of the paradigm NICE works within for ensuring patient choice and equity of access to a wide range of therapies.
The draft NICE guideline (2017) on depression in adults was sent out for stakeholder consultation between July and September 2017 with a planned publication date of January 2018, that has since been moved twice, first to March 2018 and currently āto be confirmedā. This pause might be an acknowledgement of the gravity of stakeholder concerns and the relevance of the guideline to public mental health. Much new evidence has emerged since the previous 2009 guideline, which, along with significant social and economic changes impacting on the experience of depression and delivery of treatments, clearly merits a new assessment of evidence. Yet, it is critical that any new guideline takes a properly balanced and nuanced approach to evidence synthesis combined appropriately with service user views, given the potential impact it will have on commissioning in the UK and further afield (several European guidelines as well as Canadian guidelines look towards NICE as the authoritative model). Elements of the first 2004 guideline on depression were employed with huge success as a lobbying device to dramatically change the nature and shape of the psychological therapy workforce and delivery in the form of the Improving Access to Psychological Therapy (IAPT) programme. In spite of many stakeholder concerns at that time about the narrow focus of IAPT on Cognitive Behavioural Therapy (CBT), the combination of NICEās skewed methodological approach and lobbying by professional groups with significant support from influential politicians, led to a significant increase in CBT training and provision, whereas training and delivery of other therapies decreased, significantly reducing patient choice.
This paper sets out key concerns regarding the methodology employed to date in the draft guideline, indicating that the guideline will not be fit for purpose and has the potential to seriously impede patient choice. Specifically, stakeholders and commissioners of mental health services require treatment recommendations that address the clinical needs of the entire spectrum of patients who experience depression. We argue that alongside the high prevalence of mild to moderate cases of depression, services also face the significant clinical challenge of treating cases of chronic, recurrent, refractory depressive symptoms that commonly co-occur with other morbid physical and mental health conditions. If adopted without significant redesign, these issues will have a major impact on care for a significant proportion of the population given that, although not everyone experiencing depression will have a formal diagnosis, 42% of adults report experiencing depression at some time in their life (Mental Health Foundation, n.d.). The guideline will impact individuals, families and communities as well as people in other nations that have in the past adopted NICE guidelines. The largest impact will be felt as a result of not adequately meeting the challenges of chronic, recurrent and complex cases.
In this paper, we address a number of key issues with the draft guideline and illustrate how these issues impact significantly on the way recent RCTs for chronic depression (CD), treatment resistant depression (TRD) and complex depression have been classified in the draft guideline, leading to a bias against psychological therapies generally and psychodynamic psychotherapies in particular. The focus on CD and TRD is chosen partly because of the limited availability of effective interventions for this group who are therefore already disadvantaged by current services and likely to be most affected by any implementation of the guideline. Because of the focus on TRD and CD, in the more technical aspects of critique, we draw mainly on two recent RCTs of psychodynamic psychotherapy for TRD. These are Fonagy et al. (2015), an RCT of 18-month individual long-term psychodynamic psychotherapy (LTPP) for TRD with a two-year follow-up; and Town, Abbass, Stride, and Bernier (2017), an RCT of short-term psychodynamic psychotherapy (STPP) for TRD with an average of 16 sessions and one-year follow-up.
Undermining subjective experience
NICE made a decision not to update the section in the guideline on service user experience purportedly because of insufficient stakeholder responses supporting an update during the scoping phase of development. This is regrettable given that the section copied over from the 2009 guideline (NICE, 2009) was inadequate. Experience of depression is intertwined with the social and economic context in which people live. It relates to levels of community cohesion, economic circumstances, social support and loneliness. There is growing evidence of the impact of austerity on depression and many clients with depression have been significantly affected by reductions in their benefits, loss of work or changes to employment conditions resulting from the economic downturn and political choices (see for example Psychologists Against Austerity, n.d.). Experiences of depression will have been affected by this and there is no scientific basis for the assumption that experience of depression is a static biological phenomenon (see, for example Kendler, 2016). There have also been changes which impact on the extent to which stigma features in client experience. Campaigns such a Time to Change (Henderson et al., 2016) may (or may not) have had an impact on the experience of depression and help seeking. Recent policy changes could also have impacted on experiences of carers; the Care Act coming into law in 2014 and benefit changes mean that carersā experiences are unlikely to be the same as in 2004 or 2009. The guideline approach implies these have remained largely static.
The 2009 Guideline Committee (GC) reviewed some primary qualitative literature but the review was based on one existing review of patient experience of guided self-help for depression (Khan, Bower, & Rogers, 2007) plus two other articles. This focus is skewed and narrow. There is a great deal of primary research on experiences of depression and experiences of treatments going well beyond guided self-help interventions. The review by the GC (transferred verbatim from the 2009 version) is therefore muddled and incomplete. Recent literature since 2009 (not reviewed by the GC) extends client experience data to under-represented groups and has been undertaken in more recent social and economic contexts (e.g. Anderson & Roy, 2013; Brown et al., 2012; Bryant-Bedell & Waite, 2010; Corcoran et al., 2013; Gask, Aseem, Waquas, & Wahid, 2011; Kƶrner et al., 2011; Oliffe, Han, Ogrodniczuk, Phillips, & Roy, 2011; Oliffe, Ogrodniczuk, Bottorff, Johnson, & Hoyak, 2012; Oliffe et al., 2013; Patterson-Kane & Quirk, 2014; Smith & Rhodes, 2015; van Grieken et al., 2014). Recent literature also includes a qualitative metasynthesis of the experiences of people caring for partners or family members with depression (Priestley & McPherson, 2016) which could have informed the current guideline. There have also been many case studies published (for example Cohen, 2016; Roberts & Sedley, 2016).
Leaving aside the neglect of recent evidence, patient experience data that were used in the 2009 guideline consisted of seven written accounts collected by the GC and a reanalysis of 38 individual accounts extracted from an online database āHealthtalkonlineā. The seven service user accounts were written by respondents who were asked to compose a written narrative considering a set of closed questions. It is unclear how diverse the sample was, nor what formal method of analysis if any was used. The guideline printed the accounts in full and provided a very brief summary of their content:
Although the 6 questions were aimed at people with any form of depression, all of the personal accounts received were from people who have/have had severe and chronic depression, spanning many years. The themes that are most frequently expressed in the testimonies include trauma or conflict in childhood as a perceived cause of depression; the need for long-term psychotherapy for people with severe and chronic depression; the need to take personal responsibility for and understand the illness to improve outcomes; issues around diversity; paid and unpaid employment as an important part of the recovery process; the negative impact on daily functioning; concerns regarding stigma and discrimination in the workplace; and the relationship between people with depression and professionals. (p. 68)
This analysis lacks depth and rigour but more importantly, these findings were not incorporated into methodological approaches in the guideline or treatment recommendations. The 2009 review also re-analysed 38 accounts from a secondary data source (Healthtalkonline). No demographic details were given for the individuals whose accounts were taken from the database so it is unclear which elements of the population were represented in the data selected. The extent to which the Healthtalkonline data or the seven personal accounts collected included under-represented populations such as BAME, men, older adults, non-heterosexual clients is unclear.
Given the purpose of a NICE review is to review existing evidence, a full systematic review of primary studies in this field employing formal methodology for synthesis such as meta-ethnographic synthesis (Noblit & Hare, 1988), metasummary (Sandelowski & Barroso, 2003) or narrative synthesis (Popay et al., 2006) would have been a more appropriate approach to a guideline review. This would have enhanced understanding of service user experiences, a position held by several bodies including the American Psychiatric Association (2006), the Cochrane Collaboration (Noyes, Popay, Pearson, Hannes, & Booth, 2011) and the Health Foundation (2017). Review of qualitative findings should also be incorporated into treatment recommendations rather than being left as a stand-alone section. As to how this limitation has already disadvantaged psychodynamic psychotherapy, the guideline notes:
There was a strong feeling within the service user and carer topic group that ā¦ psychological treatment offered by the NHS in the form of CBT does not go far enough in addressing the trauma experienced in childhood. The study by Ridge and Ziebland (2006) confirms the opinions of the topic group and the testimony from the personal accounts that people with ādeep and complex problems felt the need for longer term therapyā. Those that have had long-term psychodynamic therapy report that it has been helpful in their understanding of themselves and their depression and that until they have worked through and repaired the damage experienced in childhood, depression will be a major factor in the personās life. The service user and carer topic group do acknowledge, however, that as there has been little research into the efficacy of long-term psychodynamic therapy, it cannot be recommended as a course of treatment in this guideline. (p. 97)
This comment was made around 10 years ago. Since then studies have been carried out on psychodynamic psychotherapies for long-term depression (e.g. Fonagy et al., 2015; Town et al., 2017, both discussed below). None of the recommendations (p. 100) deriving from service user and carer experiences relate to interventions and the guideline makes no policy comment about the key issue raised by service users and carers concerning stigma, which effects their help seeking behaviour even before any treatment choice is considered. Many of the new recommendations throughout the guideline do nod towards patient choice by recommending that if the patient ādoes not wantā the treatment recommended, an alternative (from a specified list) should be offered. This is, however, a limited interpretation of patient choice and fails to acknowledge inequity of access to a range of therapies as a result of the impact of the previous guideline. Any new guideline should be informed by an impact assessment of the previous guideline and this missing step has led to inequity of access to therapies compounding NICEās limited commitment to patient choice.
