Primary Care, Psychiatry and Public Health ICU

Cohort B, Group 10 PPP SSC Written Report

Primary Care, Psychiatry and Public Health ICU

Student Selected Component:

An Audit Of Outpatient Non-Attendance

At The Leeds Gender Identity Disorder Service

Nadeem Akhtar, Ian Anderson, Victoria Brown,

Charlotte Davies & Samina Koser

Abstract:

Background: Where incongruity exists between one’s anatomical sex and gender identity, anxiety and persistent feelings of discomfort with their sex that result are recognised clinically as gender dysphoria and these people may require gender reassignment surgery.

Introduction: Annually, 12% of clinic appointments are missed, costing The National Health Service (NHS) in excess of £300 million per anum as well as wasting considerable resources (both human and otherwise). Clinical staff at Leeds Gender Identity Disorder Service (GIDS) suspect a high level of non-attendance at their clinics but have never previously monitored this. Leeds GIDS have set a benchmark for “acceptability” as non-attendance rates equal to or lower than the average for the rest of Leeds Mental Health Trust (i.e.19.8%).

Methods: An audit tool was designed to assess the DNA (did not attend) rates and possible causal factors for non-attendance. The data collected was assessed to determine the attendance rate and the demographic data from the “DNA” and “Attended” cohorts was compared to suggest which patient factors might be most influential in determining attendance.

Results: For the year studied Leeds GIDS had a DNA rate of 30%. The factors most strongly linked with non-attendance were increasing distance travelled to clinic, early morning appointments and lower social classes.

Discussion: Suggestions on how to improve the DNA rate have been made- these include a change of protocol to remove passive ‘DNAs’, more patient choice for appointment time, re-written letters and improved methods of contacting the clinic.

Conclusion: Leeds GIDS has a poor attendance record, as defined by their own benchmark and the specified changes need to be implemented before the audit cycle can be completed to assess their efficacy.

Background:

It is a common misconception, in modern society, to view someone’s (biological) sex and their (self-perceived) gender identity as synonymous. It follows therefore, that complications may follow when the naïve use someone’s anatomical sex to make assumptions about their gender identity (their sense of masculinity or femininity) and gender role (their outward appearance and behaviour). It is important to remember that an individual’s sexuality (to whom they find themselves physically attracted) is a completely separate matter again, although further assumptions made about this can cause further issues. It is relatively common for individuals to maintain a gender role that is in keeping with their sex, despite readily identifying with a contrasting sense of gender identity (see below).

Gender Role
‘…behaviours, attitudes and personality traits that a society, in a given culture and historical period, designates as masculine or feminine, that are more “appropriate” or typical for the male or female social role. In young children the measurement of gender role behaviour includes several easily observable phenomena, including affiliative preference for same sex vs opposite sex peers, interest in rough and tumble play, fantasy roles, toy interests and dress-up play.’

Reproduced From:

Bailey and Zucker. Childhood sex typed behaviour and sexual orientation: a conceptual analysis and quantitative review. Developmental Psychology 1995; 31: 43-55

While individuals with incongruity between their anatomical sex and gender identity are not medically unwell, the resulting anxiety and persistent feelings of discomfort with their anatomical sex that these individuals usually experience from childhood onwards are recognised clinically as gender dysphoria or transsexualism. Transsexuals have strong, ongoing, cross-gender identification with a desire to live and be accepted as a member of the opposite sex.1 The World Health Organisation recognises transsexualism in its International Statistical Classification of Diseases and Related Health Problems (ICD-10) as follows: 2

Gender identity disorders
F64.0 / Transsexualism
A desire to live and be accepted as a member of the opposite sex, usually accompanied by a sense of discomfort with, or inappropriateness of, one's anatomic sex, and a wish to have surgery and hormonal treatment to make one's body as congruent as possible with one's preferred sex.

In the United Kingdom, it is estimated that approximately one in 30,000 genetically male adults and one in 100,000 genetically female adults wish to change their sex, although a more recent study in the Netherlands suggests that these figures may now be nearer to one in 11,900 and one in 30,400 respectively.3,4 The aetiology of gender dysphoria is debatable; some people believe that it is a product of the nurturing aspects of gender reinforcements and programming, while others believe it to be a reflection of maternal mental health during pregnancy.1 Many popular hypotheses acknowledge that gender identity is determined, at least in part, by circulating hormone levels during one’s foetal development and the effects that these have on the brain.5 There is evidence to suggest that gender identity becomes fixed in early childhood.6 It is most likely that determination of gender is actually multifactorial and that it would therefore be better suited to a sliding scale of masculinity/femininity than being “shoe-horned” into a dichotomy so that it is in keeping with the biological sexes.

If a patient presents with suspected gender dysphoria, a medical practitioner should diagnose this if they are able to elicit clinically significant long-term anxiety, distress and impairment in social and occupational functioning, in the absence of a genetic abnormality.3 Patients diagnosed with gender dysphoria are referred to a specialist gender dysphoria clinic, usually by a psychiatrist. As alternatives to sex reassignment surgery, gender dysphoria clinics are able to offer a number of adjuvants to aid people to live their lives while maintaining their physiological sex. These services may include counselling, speech therapy, electrolysis (to remove facial hair) or hormone treatments. Some more minor cosmetic procedures are also available that will not affect one’s fertility, such as a thyroid chondroplasty (shaving of the Adam’s apple) or breast implants.7

If sex reassignment surgery is decided upon, the person must have lived in role for a minimum of one year before surgery is started. A biological male wishing to become female will be given female hormones; in order to produce changes in the secondary sex characteristics (such as body hair reduction and breast development) electrolysis may also be offered. During the operation, an artificial vagina is created and lined with skin from the penis and the scrotum is used to fashion a labia, and the urethra shortened and repositioned. For the female to male patient, male hormones are given, increasing hair growth (especially of facial hair) masculine muscle development, and deepening of the voice. A mastectomy is performed and the ovaries and uterus also removed. Penis construction, artificial testicular implants and urethral repositioning are available but the surgery is complex.3 For both groups, hormone treatment should have been commenced at least one year prior to surgery to allow the body’s levels to stabilise.

Introduction:

The costs incurred by the National Health Service (NHS) when patients do not attend (DNA) outpatient appointments are high, both financially and otherwise. In 1984, a paper written to assess the impact of missed appointments found that of the 35.5 million NHS appointments to outpatients that are made annually, five million (14%) were missed, at an estimated financial cost of £266 million.8 By the turn of the century, the annual cost had already risen to well in excess of £300 million and was showing no signs of slowing.9, 10 On an individual level, the average missed appointment is estimated to cost the NHS £65, with lengthier appointments costing significantly more.11 In addition to the frustration that staff experience when patients are absent from clinic without warning, other resources such as clinic rooms and medical equipment are also booked up when they might have been used elsewhere. The effects of non-attendance are not even confined to the NHS and its employees; they significantly contribute to patient waiting lists, thereby inconveniencing other people who are waiting to be seen as quickly as is possible. One study concluded that outpatient non-attendance might increase waiting lists by anything from one week to six months.12

Nationally, the DNA rate stands at 12%, although this can vary from speciality to speciality and from region to region. Studies have reported DNA rates ranging from five to 34%.13, 14 DNA rates are generally elevated in psychiatric subspecialties and departments and this is not surprising, given that the main reasons for patient non-attendance include forgetting the appointment, illness, work commitments and difficulties with transportation; problems that are particularly prevalent among the psychiatric patient contingent.10In addition to the aforementioned reasons that patients commonly use to explain their absence from clinic, there are certain demographical factors that seem to be associated with non-attendance. One prospective study illustrated the main patient demographics associated with hospital non-attendance are: male sex, youth, social deprivation and being unemployed. This study also found that non-attendees were less likely to own a car or a telephone.15 The impact of non-attendance at psychiatric outpatient clinics is compounded by the length of appointments that patients are offered. In psychiatry, it is not uncommon for patients to be offered appointments that are an hour or even 90 minutes in duration and if one of these appointments is missed, it wastes a great deal of clinicians’ time and resources. Furthermore, non-attendance may actually be an indicator of the severity of the illness in psychiatric patients.16

A study by Lacy et al. found that, where patients DNA clinics, there was often a previous history of non-attendance.17 This paper also concluded that non-attendees were less likely to have understood the reason for and nature of their appointment in the first place. As well as confirming that patients’ reasons for not attending were commonly centred on forgetfulness, trouble missing work, arranging childcare and transportation, this paper also found a significant correlation between non-attendance and increasing length of time between appointment scheduling and the appointment itself. It is supposed that longer waiting times lead to less reliable appointment keeping, through loss of trust and satisfaction. In their paper, Ritchie et al. described how, in psychiatry there is particular concern that non-attendance can represent deterioration in the mental health and thus may indicate risk of harm to the patient or to others if ignored.18

From discussion with clinical staff at the Leeds Gender Identity Disorder Service (Leeds GIDS), the perceived DNA rate for their outpatient clinics is very high. Having said this, the team at Leeds GIDS has never previously audited its DNA rates and there are currently no defined protocols in place to ensure good attendance. The Leeds GIDS have therefore defined the benchmark for “acceptability” as having outpatient attendance rates equal to the average for the Leeds Mental Health Trust, indeed they eventually aim to be one of the best performing departments within the trust. It is hoped that by investigating the current DNA rates and exploring potential causal factors for non-attendance, it will be possible to suggest changes that can then be implemented and subsequently re-audited to evaluate their efficacy.

Under the terms of the Freedom of Information Act 2000, Leeds Mental Health Trust must make its records of attendance rates publicly available. In 2004, The Healthcare Commission have compared the rates of missed outpatient appointments across all of the Nation’s Mental Health Trusts and have banded the trusts according to these (see table below).19 The bands range from Band one (poorest) to Band five (best) and Leeds Mental Health Trust gained Band three status.

Healthcare Commission’s Missed Outpatient Appointment Rate Banding:

Poor

/ Band One / Greater than 27.4%
/ Band Two / Less than or equal to 27.4% and greater than 20.9%
Band Three / Less than or equal to 20.9% and greater than 15.0%
Band Four / Less than or equal to 15.0% and greater than 11.3%
Good / Band Five / Less than or equal to 11.3%

Within the Leeds Mental Health Trust, the DNA rate varies markedly between the specialties. Over the three-year period from 2003-4 until 2005-6, the best performing speciality was psychotherapy, which enjoyed a mean DNA rate of 7.1%, whereas the worst performing speciality (liaison psychiatry) had a mean DNA rate of 26.0%. Over the same period, the Leeds Mental Health Trust’s overall DNA rate was 19.8%. A summary of the year-by-year results can be seen below:

A Comparison Of Outpatient Appointment Rates Within Leeds Mental Health Trust:

Year

/ Highest DNA Rate / Lowest DNA Rate / Overall Trust DNA Rate
2003-4 / Forensic Services (25.6%) / Psychotherapy (5.7%) / 20.8%
2004-5 / Liaison Psychiatry (26.3%) / Eating Disorders (2.0%) / 20.8%
2005-6 / Liaison Psychiatry (28.9%) / Eating Disorders (4.4%) / 18.1%
3-Year Period / Liaison Psychiatry (26.0%) / Psychotherapy (7.1%) / 19.8%

Leeds GIDS defined the benchmark for “acceptability” as having outpatient attendance rates equal to the average for the Leeds Mental Health Trust, this can now be quantified; 19.8%. Similarly, the ideal standard that the Leeds GIDS hopes to eventually achieve is a non-attendance rate at least as low as 7.1%.

Objectives:

• Audit the DNA rates for first appointments at clinics in the Leeds GIDS against the average DNA rate in the Leeds Mental Health Trust.
• Use the data collected in order to ascertain possible reasons why patients may not attend their appointments.
• Feedback the results and provide recommendations for change to improve attendance to the Leeds GIDS that may be implemented and audited again at a later date.

Methods:

Project Plan:

Task

/

Timing

Background Research- about DNA rates, conducting an audit, what is gender dysphoria? / Weeks 1-4
Design Audit tool / Week 1
Pilot Study- conduct pilot, and make necessary changes / Week 5
Data Collection / Week 6
Data Analysis / Weeks 6-7
Discussion- including recommendations for future practice / Weeks 7-8
Writing Report / Weeks 6-10

Background:

In order to review the existing literature surrounding gender dysphoria and DNAs, a search was performed using the Medline database. The search was limited to publications between 1966 and May, week three, 2006, and to articles written in English. The search terms used and combined were: DNA, did not attend, non-attendance, psychiatry, out-patient and mental health. The terms gender dysphoria, gender identity, transsexual, transsexualism and sex change were used to obtain background information on the subject. A combined search for the gender dysphoria and non-attendance terms yielded no results. The searches were repeated using the Internet search engine Google.20

Under the terms of the Freedom of Information Act 2000, Leeds Mental Health Trust must make its records of attendance rates publicly available. These were obtained following a written request to Leeds Mental Health Trust Headquarters.

Audit Tool (Appendix one):

An initial inquiry tool was produced, which did not only include information about the assessment appointment in but also some general patient demographics that could then be analysed to ascertain possible reasons for any DNA. The tool was produced using Microsoft Excel so formulas could be used that meant the program would calculate things such as age from the date of birth and distance from the postcode. The headings were:

• Patient ID-in order to keep track of notes that had been audited. This information was not for use in the analysis.
• Date of Birth
• Postcode- to be used to calculate the distance the patient has to travel to the clinic
• Starting Sex- before commencing treatment
• Deed pole- was there evidence of the patient changing their name by deed pole in the medical notes?
• Social Class-
• I- Professional occupations
• II- Managerial and Technical occupations
• III- Skilled occupations
• IV- Partly-skilled occupations
• V- Unskilled occupations
• VI- Student
• VII- Unemployed
• Is the patient living with a partner?
• Number of Children
• Any previous referral to mental health service unrelated to gender identity disorder
• Each appointment (1st, 2nd, 3rd etc…)
• Month and year
• Time of day- rounded to nearest hour
• Attended?- yes/no/cancelled
• Date of referral to service- in order to calculate waiting time for 1st appointment

Pilot Study:

A pilot study was conducted using the initial audit tool to ascertain its effectiveness and identify what may need to be included in the audit and what information is irrelevant. Every member of the group audited the same five patients and the results were cross-referenced for any discrepancies. Each member of the group entered the same data. The audit tool was successful in the main, but some changes were needed. When writing details about appointments, it was difficult to find details about every appointment. Furthermore, it was going to be difficult to analyse results for more than one appointment. The decision was made to look at the first assessment appointment only. A box was then added for ‘outcome’ so rather than details about subsequent appointments, it would only be recorded as subsequent appointments arranged, new assessment appointment (e.g. if first was cancelled), treatment completed, patient discharged or treatment completed. Another addition to the audit tool after the pilot was a section recording past psychiatric referrals other than those related to gender dysphoria. The final change was removal of deed pole recording. It was found that some notes had a deed pole paper in them, but of those that didn’t the patients name may not have changed although this was not certain. It was suggested in some notes that the name was changed by deed pole but there was no official record of this.