Digital Ulcers – Capturing The Patient Experience to Improve Outcomes

Digital ulcers can be an extremely debilitating aspect of life with scleroderma. They can be painful, slow to heal and detrimental to emotional and social wellbeing. Researchers funded by the Scleroderma Clinicals Trials Consortium (SCTC) sought to understand how digital ulcers can affect a person's life, discussing pain, aggravating factors and practical measures taken when ulcers develop. The purpose of this investigation was to gather information from which a patient reported outcome questionnaire could be designed, to support the future testing of new treatments. The discussions also enabled the study's authors to create poems to capture the experiences of the participants.

Digital ulcers in patients with systemic sclerosis

Digital (finger and toe) ulcers are common in people with systemic sclerosis, and around half of patients may develop an ulcer at some time. Although we have treatments to prevent and heal ulcers, these are not always successful, so improvements are needed. A major challenge to testing new therapies is how we decide in a clinical trial whether the treatment is helpful or not. This is typically done by clinicians visually inspecting the ulcer with the human eye. What is needed is to understand how digital ulcers impact on patients and then to design a new questionnaire (a 'patient reported outcome instrument') to capture what really matters to patients and to show that treatments are effective.

How we approached the problem

We were very grateful to receive funding from the Scleroderma Clinical Trials Consortium (SCTC) to undertake this research. Members of our research team met with four groups of people around the UK who had been diagnosed with systemic sclerosis and had at some point experienced digital ulcers. The groups involved both men and women of different ages and ethnic backgrounds. The researchers asked questions to each group of participants, about their experiences and how the ulcers affected their lives. These questions had been put together by a panel of clinical experts and patient representatives. Five themes that encapsulated the experiences of the participants were identified, (see below), and presented in a peer-reviewed scientific journal article published in Arthritis Care and Research(1).

Disabling pain and hypersensitivity

Participants reported that pain was one of the worst things about digital ulcers and many used quite graphic and emotive language to describe their pain (see the poem created below). People described how intense and disproportionate the pain was compared to the size of the ulcers, which were often no bigger than a fingertip. They described how it was often difficult for others, such as friends, family or doctors, to understand how excruciating the ulcers could be. They explained how changes in temperature, exposure to infection and 'knocking' the ulcer would aggravate the pain, and many described how the site of the ulcer remained painful even after it had healed.

Deep and broad-ranging emotional impact

People also talked about the emotional impact of ulcers. Many experienced anxiety, as they tried to avoid anything that would aggravate their ulcer, including work or family activities, such as playing with their children. There was uncertainty about where and when the next ulcer would appear, how severe it would be and how long it would take to heal. This constant vigilance could lead to feelings of anger, fear and frustration. Some participants also talked about being embarrassed about the appearance of ulcers and trying to conceal them with bandages or gloves, which also protected these areas from knocks.

Impairment of physical and social activity

Digital ulcers had far-reaching effects on people's ability to function, as some struggled to continue with work, hobbies and day-to-day activities. The ulcers could also cause reduced hand function, making everyday tasks more challenging.

Factors aggravating occurrence, duration and impact

Whilst some participants had only ever had one ulcer, others had multiple ulcers occurring regularly. People also reported the weather as a factor, since slight temperature variations or cold weather could be painful, although ulcers healed better during summer.

Managing and adapting to ulcers

Despite the heavy burden that ulcers could impose on people's lives, the study participants reported how they had found ways to adapt. These included devising new ways of doing things that avoided causing more pain and enabled them to continue with their lives and activities.

Future steps from this work

We hope to use the information from this study to create a 'patient reported outcome' instrument/questionnaire, to ensure that we can measure the things that are important to people who experience digital ulcers; which can be used when developing and testing new treatments.

In addition, a set of six poems were created from the groups' transcripts, to capture the wide digital ulcer experience using the words of the people who kindly participated in the study. One has been reproduced below, and the others are available on the SRUK website.

Summary written by:

Michael Hughes 1,2:

1.Centre for Musculoskeletal Research, Faculty of Biology, Medicine and Health, The University of Manchester, UK.
2. Department of Rheumatology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

Jennifer Jones 3,4:

3. Musculoskeletal Research Unit, Translational Health Sciences, Bristol Medical School, Bristol, UK.
4. Health Sciences Department, University of Leicester, Leicester, UK.

Andrew Moore 3:

3. Musculoskeletal Research Unit, Translational Health Sciences, Bristol Medical School, Bristol, UK.

Study team

Michael Hughes BSc (Hons) MSc MBBS MRCP (UK) (Rheumatology) PhD, John D Pauling BMedSci BMBS PhD FRCP, Jennifer Jones PhD, Christopher P Denton PhD FRCP, Robyn T Domsic MD MPH, Tracy M Frech MD MS, Ariane L Herrick MD FRCP, Dinesh Khanna MD MS, Marco Matucci-Cerinic FRCP FBSRhon, Lorraine McKenzie, Lesley Ann Sakettkoo MD MPH, Rachael Gooberman-Hill PhD, Andrew Moore BSc (Hons) PhD

1 Hughes M, Pauling JD, Jones J, Denton CP, Domsic RT, Frech TM, et al. A Multi-Centre Qualitative Study Exploring the Patient Experience of Digital Ulcers in Systemic Sclerosis. Arthritis Care & Research. 2019;doi: 10.1002/acr.24127. [Epub ahead of print].

A conceptual map comprising the five major inter-related themes that constitute the patient experience of SSc-DUs (1)

We are very grateful to be able to share the following poems, and we would love to see how our community expresses their experiences of Raynaud's and scleroderma in the form of narrative pieces, artwork, poetry and so forth, so please send them in to us and we might share them on our social media!

The pain is the worst

You want to sit there and rock,

the pain is the worst

as if you've taken the skin off with a cheese grater,

the pain is the worst

like rose thorns stuck in your finger,

the pain is the worst

as though you've scalded your finger,

the pain is the worst

like I just slammed the car door on it,

the pain is the worst.

Your finger is in the hinge of the door,

the pain is the worst

hammering a nail right through the tip,

the pain is the worst

like somebody's sticking a needle in your finger,

the pain is the worst

you just rock back and forward,

the pain is the worst

just want to sit on the floor and cry,

the pain is the worst.

You hit them,

they hurt

and to actually bend the fingers,

they hurt

where your ulcers are,

they hurt

actually on top of the knuckles,

they hurt

the pain never goes,

they hurt.

The pain is just unbearable,

chop your finger off

you want to bang your head to refer the pain,

chop your finger off

it's just so painful,

chop your finger off

just to release the pressure,

chop your finger off

that's how bad it is, the pulsating pain,

chop your finger off.

Can't do anything like that

Anything that's chilly,

can't do anything like that

lifting up heavy things,

can't do anything like that

you've got to hold on tight,

can't do anything like that

got to zip something up,

can't do anything like that

doing things like knitting,

can't do anything like that.

I can't go up and down the fridge aisle,

going to supermarkets

I have to stand there and wait,

going to supermarkets

do I need anything down there?

going to supermarkets

it's just too cold,

going to supermarkets

can't get your money out of your purse,

going to supermarkets.

I can't get things out of the freezer,

if I have an ulcer

you can still feel instant pain,

if I have an ulcer

I'm used to living not a normal life,

if I have an ulcer

everything takes ten times longer,

if I have an ulcer

It takes over your life,

if I have an ulcer.

I just do everything I can,

to avoid getting an ulcer

keeping them warm,

to avoid getting an ulcer

moisturising, dry, you know,

to avoid getting an ulcer

moving around slowly, methodically,

to avoid getting an ulcer,

and think about what I'm doing,

to avoid getting an ulcer.

You never forget

I've got the proof I had them,

you never forget

the scarring, they're painful,

you never forget

if I knock them, I'm on the floor rolling,

you never forget

be aware of your space around you,

you never forget

where you've had them,

you never forget.

I don't particularly want to go out,

when I've got one

because I'm so frightened,

when I've got one

of getting in the car and banging,

when I've got one

picking my keys up and banging it,

when I've got one

so, I tend to watch the telly,

when I've got one.

It's so difficult isn't it,

to try and function with it

oh, I do feel restricted,

to try and function with it

when it's really sore,

to try and function with it

I feel like I don't want to go out,

to try and function with it

especially if it's cold,

to try and function with it.

It's really tender,

where I had the ulcer

if I just catch me finger now,

where I had the ulcer

you know that's where it's going to come back,

where I had the ulcer

it just left a lot of tenderness,

where I had the ulcer

it's just the pain,

where I had the ulcer.