Dedicated community-based services for adults with personality disorder: Delphi study

Dedicated community-based services have been recommended forpeople with personality disorder, but little is known abouthow such services should be configured. We conducted a Delphisurvey to assess opinions about this. A panel of expert authors,service providers and service users agreed on only 21 (39%)of 54 statements on the organisation and delivery of care. Consensuswas not reached on important issues such as working with peoplewith a history of violent offending, the role of communityoutreach and the use of compulsory treatment. Further workneeds to be undertaken before the optimal organisation of dedicatedpersonality disorder services can be agreed.

INTRODUCTION

TOP

INTRODUCTION

It is estimated that 4% of people have a personality disorder.¹ Personality disorder has a significant impact on individuals,their families and society at large. Despite this, people withpersonality disorder have historically been overlooked by mainstreammental health services. Many people with personality disorderare dissatisfied with the care they receive and some cliniciansare reluctant to work with this group.^2,3 Concern about thequality of personality disorder services prompted the Departmentof Health to recommend the development of dedicated community-based services in England and fund 11 new `pilot' personality disorder services.⁴ Although evidence about the effectiveness of specifictreatments for people with personality disorder is beginningto emerge,⁵ there is little information to guide the developmentof such services. We therefore conducted a Delphi study todevelop a consensus on how dedicated community-based servicesfor people with personality disorder might best be delivered.

Method

TOP

Method

Delphi studies involve sequential rounds of questionnaires inwhich participants are given feedback summarising the viewsof others and asked whether they would modify their views inthe light of this feedback.⁶ We developed a 49-item questionnaireon the organisation and delivery of dedicated personality disorderservices based on in-depth interviews with service users andproviders, and recommendations from the study team.⁷ Each question comprised a statement and an accompanying Likert scale rangingfrom 1 (disagree) to 9 (agree). Two additional items askedpanellists to rank 11 priorities for service development and6 measures of service outcome. Panel members were also encouragedto provide suggestions for additional items to be includedin the subsequent round.

The panel comprised service providers (from the 11 nationalpilot services), service users (recruited via the Departmentof Health's national personality disorder programme, a mentalhealth charity (the Mental Health Foundation) and a nationalservice user group (`Borderline UK')) and academic experts.Academic experts were identified from an electronic search of bibliographic databases of all those who had published at leastone peer-reviewed paper on personality disorder services inthe UK in the past 10 years. We aimed to recruit equal numbersfrom each group; the final panel comprised 34 service providers,34 service users and 31 academic experts. Three rounds werecarried out. In the first round, eight additional statements were suggested, which led to five new statements in the secondround of the survey. This meant that a total of 54 items wererated, plus the two ranking items.

For analysis, the 9-point scale was divided into bands of disagree (1–3), neutral (4–6) and agree (7–9). Consensuswas judged to have been reached when 75% of panellists respondedin the same 3-point band. Feedback on the results of the previousround was given to participants in rounds two and three, includingthe person's previous response, the median rating and informationabout differences between stakeholder groups where applicable.

Results

TOP

Results

Eighty-eight people (89%) responded to the first-round questionnaire,85% in the second round and 82% in round three. Expert authorsand service providers included 21 (34%) psychiatrists, 13 (21%)psychologists, 12 (20%) psychotherapists, 8 (13%) nurses and2 (3%) social workers.

Consensus was reached on 21 items (39%), which are listed inthe online Table DS1. Ten items were endorsed in round one,five in round two, and a further six in round three. Consensuswas not reached on most items, including: whether servicesshould work with people with a history of violent offending;the role of assertive outreach; whether people should be assessed in their own homes; use of medication; whether teams neededto have medical input; use of compulsory treatment orders;and whether dedicated out-of-hours services should be provided.

Details of items endorsed by each of the three groups of stakeholdersare shown in the online Table DS2. Major differences betweenstakeholders were not found. However one item, `It does notmatter if personality disorder services do not have a cleartreatment model, as long as there are positive outcomes forservice users', was rejected by expert authors and service providers,but it was endorsed by over 40% of service users.

Priorities for service development were rated by 88 (89%) panellists.Four types of service scored consistently highly: those aimedat reducing stigma and discrimination associated with personalitydisorder and community-based services providing psychologicaltreatments (median score=8), and dedicated day services andconsultation services providing expert guidance to colleagues working with people with personality disorder (median score=7).Two types of service, therapeutic communities and in-patientunits for people with severe personality disorder, were ratedlower (median score=5). All measures of service outcome werescored highly. Quality of life was ranked highest by all threegroups. Expert authors and service providers placed social functionas the next most important outcome, with service users optingfor reduction in symptoms of mental distress. All three stakeholdergroups rated user satisfaction with quality of care the leastimportant outcome measure.

Discussion

TOP

Discussion

Consensus was reached on only 39% of items, which is lower thanthat achieved in previous Delphi studies examining generaland dedicated mental health services.^8,9 Although we involvedpanellists with a wider range of backgrounds than most previousstudies, it is unlikely that this resulted in the low levelof consensus as the more homogeneous subgroups of service providersand expert authors agreed on even fewer (35%) items. Instead,we think that the lack of consensus reflects the rudimentaryexperience of service provision for people with personalitydisorder and the limited evidence base that exists to support their development. The differences between groups that we didfind may reflect a greater interest in the outcome rather thanthe process of care among service users, and a tendency toplace greater importance on user involvement among serviceusers and providers than among the expert authors that participatedin the study.

Despite low level of consensus, agreement was reached on several statements, some of which apply equally well to generic mentalhealth services, although others are more specific. For instance,general mental health services often need unilaterally to takesteps to reduce risk of harm to self or others: in contrast,panellists agreed that the reduction of risk to people withpersonality disorder involves placing a high degree of choice and personal responsibility with the patient. Panellists statedthat most people with personality disorder should have accessto dedicated services. In 2002, only 17% of trusts in Englandprovided such services.⁴ Although dedicated services may reducethe need for in-patient and emergency medical services,¹⁰ the financial implications of providing them for all those withpersonality disorder would be significant.

Strengths of the study include the range of perspectives thatwe accessed and the high response rate. However, all panellistscame from Great Britain and although several factors wouldseem important in other countries, others are more closelyrelated to the way that services are currently configured in Britain. A more fundamental limitation of this, and other Delphistudies, is that findings are based solely on expert opinion.A consensus based on expert opinion can be of value, especiallywhen other forms of evidence do not exist, but expert opinionmay still be flawed. So, for instance, we do not know whetherservices that adhered to the principles that we identified wouldbe any more effective than those that do not.

In England, mental health service providers have been askedto ensure that people with personality disorder have accessto dedicated community-based services. Members of the Delphipanel recommend that such services should provide psychologicaltreatments via out-patient and day-patient units, and shouldwork to reduce stigma associated with personality disorder.They stated that interventions need to be delivered for yearsrather than months and that service outcomes should be assessedin terms of improved quality of life and social functioning,and reductions in mental distress. Findings of this Delphi studyhighlight good practice and indicate the need for further researchin this area.

ACKNOWLEDGMENTS

TOP

ACKNOWLEDGMENTS

The project was commissioned by the National Institute for HealthResearch Service Delivery and Organisation Programme, whichis funded by the Department of Health. The funder played norole in the design or conduct of the study or in the writingof this report. We are grateful to Frankie Pidd, Nick Benefield,Sarah Gillespie and Iain Ryrie for their help in drafting thefirst round questionnaire and to all those who took the timeto participate in the Delphi study.

REFERENCES

TOP