How can we gather meaningful outcomes for patients with special needs and their carers?

Public Health England today published a report which looks at the prevalence and severity of dental decay among five-year-old and 12-year-old children attending special support schools in 2014.  In this blog entry, Dr Selina Master shares her thoughts on how outcomes for patients with special needs should be measured to help drive improvements in care.

For the past 37 years I have worked in the NHS, mainly in paediatric and special care dentistry.

I recently participated in a small working group, writing a chapter on Quality Outcome Measures for the Special Care Commissioning Working Group.  This experience encouraged me to question further how we can gather meaningful feedback from our patients and their carers.

A healthy adult is likely to have a completely different perspective on what constitutes a quality outcome for their care, compared for example, to a parent caring for a child or adult with autism spectrum disorder.

In special care dentistry, it is particularly important that information is communicated clearly and appropriately to each individual, and that we use that information to improve our service.

We are being encouraged to use a combination of generic and specialty specific Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMS).

Although I see the benefits of the Friends and Families Test in other areas of medicine, this particular model does not work within special care dentistry.  Studies show that the three main areas influencing a patient’s choice of a hospital are: cleanliness, quality of care and standard of equipment, (Steiner and Norman 2008).  However, the question is whether this is the same for community-provided services and special care dentistry?

Are we guilty of focusing on measurable outcomes which provide easily comparable quantitative information, when the most valuable information we should be collecting is of a more qualitative nature, and perhaps more complex to measure in a valid and reliable way?

We owe it to our patients to ask them first what is actually important to them, and this may be different for each specialty area.  Qualitative feedback gleaned from our comments book, left in the waiting room, clearly demonstrates what is really important to our special needs patients and their carers and families.

Furthermore, recent comments made by a mother of one of my patients, who has a very complex medical history, made me stop and reconsider what is important to them as a family when it comes to the care we are providing.

She said: “You have got it right within your community dental service. When I come for my child’s dental reviews, we do not have to wait and you have all the information to hand. Most importantly, we see the same dentist each time and for me that is critical for children with special needs.”

She relayed a recent experience when they attended a hospital for a non-dental health check-up. She told me that after sitting for more than two hours in the waiting room, they saw a clinician whom they had never seen before, and who had no understanding of her child’s past medical or clinical history.  The mother had to repeat the child’s health issues again, and the two hour wait meant her child was understandably distressed and uncooperative.

For this mother, a clean waiting area and new equipment were of no relevance because what she actually rated as important was the continuity of care and minimal waiting time on the day of the appointment. She wanted a professional approach from a clinician who had taken the time to familiarise themselves with the patient beforehand.

So, the result of this hospital appointment was a zero outcome, unless you count the negative experience for mother, child and no doubt, the clinician who saw them – and that is not the best use of everyone’s valuable time and resources.  

How can we ensure our patients with special needs have a voice which is heard? How can we effectively deliver the information to them, and then ensure we listen and act upon their responses? My experience has shown that patients with a learning disability or impairment have a lot to teach us. We just need to give them the time and respect, to enable us to tap into that valuable resource.

Dr Selina Master is a Specialist in Paediatric and Special Care Dentistry and a Board Member of the Faculty of Dental Surgery at the Royal College of Surgeons.