Documenting shared decision-making in dermatology at a UK teaching hospital

15th October 2024

The use of shared decision-making in dermatology is varied despite a desire for it to be embedded into routine clinical practice in the UK. A recent retrospective, single-site study explored the extent to which shared decision-making was documented in medical records for those undergoing immunosuppressant treatment for a dermatological indication.

The King’s Fund’s 2011 publication ‘No decision about me, without me’ noted that the Government wants shared decision-making to become the norm in the NHS.¹

There have been various definitions of shared decision-making over the years. Guidance from the National Institute for Health and Care Excellence (NICE) defines it as ‘a joint process in which a healthcare professional works together with a person to reach a decision about care’.

In general, shared decision-making involves choosing tests and treatments based on evidence and the person’s preferences, beliefs and values. Discussion and information sharing ensure that the person understands the risks, benefits and possible consequences of the available options.

This joint process empowers people to make decisions about their care that are right for them at that time, with the options of choosing to have no treatment or not changing what they are currently doing always included.² Shared decision-making is most appropriate when more than one reasonable option is available, with trade-offs between potential benefits and harms.

Other than when there may be time-challenging acute contacts with patients, it is argued that all significant healthcare decisions should be based on a dialogue that incorporates both the healthcare professional’s experience and expert knowledge of illness and health, as well as the patient’s experience, values and preferences for their own lives.³ Patients are no longer seen as passive recipients in healthcare, and healthcare professionals are not transmitters.³

Observing shared decision-making guidance

The General Medical Council (GMC) Decision making and consent guidance notes that all patients have the right to be involved in decisions about their treatment and care and to make informed decisions, if they can. It also states that the exchange of information between clinician and patient is essential to good decision-making.⁴

In addition, Good medical practice guidance for all GMC-registered doctors highlights the need to support patients in making decisions about treatment and care and sharing information with patients.⁵

Within the NHS in England, the NHS Standard Contract includes Service Condition 10 on Personalised Care, which states: ‘In planning and reviewing the care or treatment which a service user receives, the provider must employ shared decision-making, using supporting tools and techniques approved by the co-ordinating commissioner.’

Furthermore, shared decision-making is driven by the duties of NHS England to promote individual participation in decisions about care, treatment, tests and prevention of illness; promote patient choice; and exercise its functions to secure continuous improvement in the quality of services.⁶

Dermatology and shared decision-making

Dermatology is a specialty particularly suited to shared decision-making as the severity of most dermatologic diseases is defined by patients’ experiences of symptoms and adverse psychosocial impact.⁷

A shared decision-making approach in dermatology has been described in several publications across different countries and conditions.^8-10 A survey assessing the extent of shared decision-making in atopic dermatitis and psoriasis in the Netherlands found that despite the dermatologists’ optimistic perspective, patients experienced a limited extent of shared decision-making.⁹

At Royal Cornwall Hospitals NHS Trust, we wanted to ascertain the extent to which shared decision-making is documented in medical records as having occurred for patients who commenced an immunosuppressant for a dermatological indication. 

Royal Cornwall Hospital is a 750-bed acute teaching district general hospital in the south-west of England. The dermatology unit provides routine and emergency assessment, treatment and surgery for patients with skin conditions and diseases.

In conditions for which an immunosuppressant would be prescribed, the patient is typically referred from primary care, sees a senior dermatology doctor and then attends a nurse-led clinic for any baseline tests and education on the treatment. The first prescription for the treatment is usually provided through the outpatient pharmacy.

Methods

This was a retrospective, single-site study in an acute teaching district general hospital.

A convenience sample of patients prescribed one of the three target oral immunosuppressants (azathioprine, ciclosporin or methotrexate) from dermatology was identified by searching the outpatient dispensing database (see Table 1).

Table 1. Patient characteristics of those prescribed target immunosuppressants

We used the NICE shared decision-making guideline,² choosing prompts from section 1.2 to formulate our questions, having decided not to include information relating to whether:

• There was documentation that the patient lacks capacity
• There was documented evidence of the option of having a family member, carer or advocate present prior to the actual medication discussion
• A treatment decision was documented
• What the person said was important to them in making those decisions was documented
• Resources were offered to summarise the discussion/decisions made about treatment.

The date of initial dispensing for a specific patient was used to search for any correspondence to the GP or patient on our patient administration system. Such correspondence was examined for any text relating to the questions in Table 2. The patient characteristics of gender, age and indication for treatment were also recorded. Data were entered and analysed in Microsoft Excel.

Table 2. Questions arising from NICE shared decision-making guidance

Health Research Authority criteria for research and service evaluation were considered. This was a retrospective assessment involving no changes to the service delivered to patients, and we used the NHS Health Research Authority tool, which helped confirm that no ethical approval was required for this project.

Patient data were used in accordance with local NHS hospital policy, and this assessment was recorded on the Trust’s clinical effectiveness database.

Results

We reviewed the correspondence records for 30 patients from late 2021 to early 2024 (see Table 2 above).

Only in a minority of patients (n=3) was there documented evidence that different available options had been shared with the patient. Overall, in 19 of the 30 cases, it was documented that there were different treatments in the pathway, although the correspondence typically described prior treatments tried or possible future treatments in the pathway rather than expressing how the patient was helped to choose between possible options.

For three of the 20 patients with eczema who were commenced on either azathioprine, ciclosporin or methotrexate, one of the alternative options was named in the correspondence as having previously been tried. In one further case, methotrexate was restarted.

In only three of the remaining 16 cases of eczema was an alternative drug – other than what was prescribed – named in the correspondence as having been mentioned to the patient. For the four psoriasis patients on methotrexate, only prior treatments were documented in the correspondence.

For all 30 cases, a treatment review period was noted. In nearly two-thirds of instances, the correspondence explicitly provided a dermatology department telephone number, although contact details for the hospital switchboard would have been in the letter.

Discussion

We found that some aspects of the NICE shared decision-making recommendations were documented in correspondence to a greater extent than others. Our study found that 26 patients (87%) were given a British Association of Dermatologists leaflet; this would have been after the medication choice had been made.

This leaflet is not a decision aid, as patient decision aids go beyond standard brochures, educational pamphlets or websites by describing evidence, helping patients think about their preferences and identifying steps to support a decision.¹⁰ Furthermore, NICE advises offering a resource before a discussion to encourage the patient to think about what matters to them, what they hope will happen as a result of the discussion and what questions they would like to ask.²

We found that in nearly two-thirds of correspondence, different options in the treatment pathways were mentioned. However, this usually describes what has previously been used or what might be a future treatment. There were only three cases when it was documented that different options had apparently been explained to the patient.

Hence, for this cohort of 30 patients, it is unclear how the decision to commence a specific drug – such as the decision between ciclosporin or azathioprine in eczema – is reached and what, if any, patient input there is into this decision.

It may be that the choice is influenced by prescriber experience and familiarity and not after a person-centred discussion. However, any clinical bias that does exist when suggesting options to patients, though possibly based on personal experience or familiarity, may not necessarily be a bad thing if the drugs are similar in effectiveness and risks.

If shared decision-making is to be embedded into practice, there should be consideration of how choosing between the three treatment options for eczema mentioned above, for example, can become more formalised for both the prescriber and the patient. Principles of how such a decision aid might be constructed are reported in the published literature.¹¹

Decision aids are effective strategies for improving shared decision making between people and their health professionals.¹² Examples in dermatology include those for actinic keratosis,¹³ although one scoping review, with a search strategy up to 2020, reported there have been few published and validated decision aids in dermatology.¹⁴ That review also argues for the exploration of the reluctance of dermatologists to include shared decision-making in their practice.

Shared decision-making study limitations

We recognise some limitations with this small-scale study. Some aspects of the shared decision-making process may have happened in the patient consultation but were not documented. Furthermore, the choice of a specific immunosuppressant will also be based on patent-specific factors such as co-morbidities that may not be detailed in the correspondence. For example, someone with a high alcohol intake may not be offered methotrexate. These factors may mean that there is, in effect, only one drug to choose.

Conclusion

This small study identified varying degrees of documentation for some critical aspects of shared decision-making for dermatology patients.

To support shared decision-making, an information leaflet highlighting the differences and contraindications of the three drugs, including their benefits and risks, could be given by the clinician to all patients so they can read through it in their own time before a treatment decision is made. This might improve the patient experience, but it might also confuse some patients and reduce satisfaction in those with poor or limited health literacy.¹⁵

Alternatively, such a leaflet could be offered to all but given selectively to patients who wish to have a more active role in choosing the drug to be prescribed. However, it is unclear now how this extra step would fit into the workflow of a busy department without causing undue delay in instigating treatment.

Authors

Michael Wilcock MPhil
Pharmacy Department

Ersa Tsoutsoura MPharm
Dermatology Department

Lisa Haddon MBBS BSc MRCP
Dermatology Department

All of Royal Cornwall Hospitals NHS Trust, Truro, UK

References

1. Coulter C, Collins A. Making shared decision-making a reality: no decision about me without me. The King’s Fund. 2011.
2. National Institute for Health and Care Excellence. Shared decision making. NG197, 2021 (accessed September 2024).
3. Steffensen KD et al. SDM:HOSP – a generic model for hospital based implementation of shared decision making. PLoS One 2023;18(1):e0280547.
4. General Medical Council. Decision making and consent. 2020 (accessed September 2024).
5. General Medical Council. Good medical practice. 2024 (accessed September 2024).
6. NHS England. Shared Decision-Making: Summary Guide. 2019 (accessed September 2024).
7. Tan J et al. Shared decision-making and patient decision aids in dermatology. Br J Dermatol 2016;175(5):1045–8.
8. Tsunemi Y, Otsuka A, Nonaka Y. Patient-physician perception gaps in setting treatment goals and communication including shared decision making: Results from the survey illuminating dialogues and insights in onychomycosis management (IDIOM survey). J Dermatol 2024;Jun 14:doi: 10.1111/1346-8138.17330.
9. van der Kraaij GE et al. The current extent of and need for shared decision making in atopic dermatitis and psoriasis in the Netherlands: an online survey study amongst patients and physicians. J Eur Acad Dermatol Venereol 2020;34(11):2574–83.
10. Coughlin CC, Politi MC. Shared decision-making in Dermatologic care: A call for more training and resources. JAMA Dermatol 2021;157(3):271–2.
11. Thomas C et al. Patient preferences for atopic dermatitis medications in the UK, France and Spain: a discrete choice experiment. BMJ Open 2022;12:e058799.
12. Ryan R, Hill S. Decision aids: challenges for practice when we have confidence in effectiveness. Cochrane Database Sys Rev 2024. Editorial (accessed September 2024).
13. Brent G et al. The development and validation of a decision aid to enhance shared decision-making for the management of actinic keratosis. Skin Health Dis 2024;4(3):e388.
14. Morrison T et al. Shared Decision-making in Dermatology: A scoping review. JAMA Dermatol 2021;157(3):330–7.
15. Richter R et al. Communication of benefits and harms in shared decision making with patients with limited health literacy: A systematic review of risk communication strategies. Patient Educ Couns 2023:116:107944.

Do not suddenly stop taking antidepressants, patients warned after BBC programme

21st June 2023

Patients are being urged not to suddenly stop taking antidepressants after seeing headlines warning that people may be taking them for too long.

A BBC Panorama programme reported NHS figures that about two million people have been taking them for five years.

The investigation also raised questions about evidence for their long-term use and that this may increase the risk of withdrawal symptoms when people try to stop.

It follows a study last year in which researchers said patients should not be told that depression is a chemical imbalance in the brain because there was ‘no convincing evidence’ that depression is caused by serotonin abnormalities.

The team at University College London (UCL) said although antidepressants can work for patients, it is not clear how they work, and patients needed to be aware of that when making decisions about treatment.

But the debate came to the fore once more this week when a group of researchers wrote a piece in the journal Molecular Psychiatry warning that the conclusion in the UCL research had been overstated and there had been selective reporting of data.

Professor Tony Kendrick, professor of primary care at the University of Southampton, said he had spoken to Panorama about the soon-to-be-published results from the REDUCE trial of a programme of support for those coming off long term antidepressants, but it had not been included.

‘The preliminary findings have shown a good proportion of people can come off long-term antidepressants with tapering advice provided by their GPs, and that internet and telephone support from a psychological wellbeing practitioner may help protect them from depressive and withdrawal symptoms,’ he said.

More detail from the three-year study involving 131 practices and 330 patients will be reported soon but it was shown to be cost effective, he added.

Shared decision-making

Responding to the Panorama investigation, RCGP chair Professor Kamila Hawthorne said when prescribed appropriately, evidence shows that antidepressants can be an effective treatment for many patients suffering from mental health conditions such as depression and anxiety.

Where alternative options may be helpful to medication, access can be patchy and slow, she noted.

But, she added: ‘Wherever possible we don’t want patients to have to rely on medication long term, and most patients don’t want that either.

‘If it is appropriate for patients to continue with antidepressants, we will schedule ongoing medication reviews to explore whether there are opportunities to reduce dosages, or stop taking medication altogether.

‘If a patient wants to stop taking antidepressants or reduce their dose, it is important that they speak to their GP, or prescribing clinician, in the first instance, and not simply stop taking their medication, as this could be very uncomfortable, and potentially dangerous, due to withdrawal effects.’

The Royal College of Psychiatrists said use of antidepressants should be carefully monitored and reviewed regularly.

‘Most people will be able to stop taking antidepressants without significant difficulty by reducing the dose (known as ‘tapering’) over a few weeks or months.

‘Some people can experience withdrawal symptoms that last longer and may be more severe, particularly when the medication is stopped suddenly.’

The College said NICE guidance in recent years has reflected the body of evidence on withdrawal symptoms with a greater focus on how to manage that safely.

‘Ultimately, the use of antidepressants, should always be a shared decision between a patient and their doctor based on clinical need and the preferences of the patient. 

‘We would advise all those thinking of stopping their antidepressants to talk to their doctor first, as these medications should not be stopped abruptly.’

A version of this story was originally published by our sister publication Pulse.