Ssc Questionnaire

Below is an analysis of the free text comments written by responders to the RSA scleroderma questionnaire.

The comments reported here are taken from a sample of 82 respondents (from 1050 returned questionnaires). Those who did not make any free text comments were not included. The sample was selected based on factors that may have affected people’s experience of the condition, including sex, age, different types of scleroderma and the time that people have been suffering from the condition. The comments are therefore not demographically representative of the people who answered the questionnaire; rather they present a range of different experiences of people with the condition and its variants in order to paint as full a picture as possible of what it means to live with Raynaud’s and/ or scleroderma. The comments presented below are those that best convey the experience of each theme.

THE EXPERIENCE OF SCLERODERMA

The comments reveal the social, physical and emotional impact of scleroderma, in particular the closely interlinked nature of the impact – the nature of the physical problems in a person’s body lead to social and emotional implications. Of course, most chronic conditions are not just physical, but have social and emotional implications too, but the very nature of the physical symptoms of scleroderma seems to lead to overwhelming social and emotional implications.

The physical symptoms may vary from individual to individual and of course do not exist in isolation. Respondents to the questionnaire described:
Pain: “I sometimes get frustrated because I feel so much pain at times that I feel ‘cheated’ in not being able to do normal everyday tasks without effort” [F,age 45-54]
Tiredness: “I wake up tired after a good night’s sleep and have limited energy to do anything much. Whenever I do shopping, walking etc I am tired after and need to rest. I don’t do what I want to do in life” [F, age 35-44]
Incontinence: “My incontinence has had the most impact as it affects my sex life and my self-esteem” [F, age 55-64]
Coldness: “My reaction to the cold affects what I can and cannot do e.g. today I cannot clean my car or garden – too cold for my hands and feet” [F, age 45-54]
Problems with skin and joints: “Stiff joints cannot do what other people do. Tried to keep up with normal people” [F, age 55-64]
Breathing problems: “Breathless on exertion” [F, age 55-64]

Some people were concerned about the changes in their physical appearance:
“I hate my looks, my mouth is so thin, my hands are terrible – so fat” [F, age 65-74]
“The dreadful look of some of the Telangiectasias – the grandchildren don’t like coming near them” [F, age 65-74].

For others problems arose from having an invisible condition:
“I look fairly well and people do not understand and think I ‘put it on’” [F, age 65-74]
“People judge you on how you look. Everything is a battle. It’s hard when you feel bad but look OK” [F, age 45-54]

Chronic conditions do not just impact on people's everyday lives, but are experienced in all its domains - family, work, household tasks and eating:
Work: “Have to … work late or early to complete work” [M, age 55-64]
Family: “Raynaud’s and low energy levels make me feel inadequate as a mum to properly care for my children” [F, age 35-44]
Taken for granted aspects of everyday life: “Everything is a chore – even just opening my front door is a major event. Holding things normally results in them falling. It affects absolutely everything” [F, age 45-54]
Eating: “My way of eating, changing food to suit, taking medication, always watching the clock for medication time and eating small amounts. Do not enjoy my food anymore” [F, age 65-74]

The description of physical problems and everyday life includes some social problems, but some respondents detailed other social and emotional aspects of living with scleroderma:
“Less confidence in my own ability as hands make me clumsy and I worry about knocking them. It puts me off meeting new people and shaking their hands” [F, age 25-34]
“Never knowing how I will be feeling from one day to the next so social engagement are difficult to arrange” [F, 65-74]

This uncertainty is also echoed in the comments of other respondents. Uncertainty can be experienced on a day-to-day basis or can be longer term, reflected in fears about the future:
“Not knowing what the future holds, how the disease will progress” [F, age 45-54]

Underlying many of the comments on the questionnaires is a profound sense of loss, restriction and overwhelming impact of the condition:
“I feel I have been invaded by an alien. I’m not me anymore. I cannot function as a normal independent woman and wife. Heartbreaking” [F, age 55-64]
“Devastating. I used to be so fit and active, full-time work, dancing, swimming, walking, cycling, rearing my four lovely children” [F, age 55-64]

People mention strategies for managing the condition, which involve planning and prioritising, although this in itself can involve restriction:
“It has changed everything. Life isn’t spontaneous any more. It has to be planned all the time” [F, age 55-64]
“You can only do what your body will allow you to do, so you have to make judgements on a daily basis. It is something that you learn after many years” [F, age 65-74]

For some people this has helped and enables them to present a positive experience of life:
“I avoid the things I cannot do and get on with the things I can do so life is still good” [F, age 55-64]
“Have had to change my lifestyle completely. Had to move house, get it adapted, give up work but I’ve enjoyed the challenge” [F, age 55-64]

VIEWS ON HEALTHCARE
In terms of formal healthcare the overwhelming message which emerged from the questionnaire comments was the need for information, both for people with scleroderma and for those treating them:
“Doctors could be more aware of the condition through training. I would like to be made more aware of the type of scleroderma I have and its likely progress” [F, age 55-64]
“Nobody seems to know anything about it. My GP is very good and will look up anything she doesn’t know. I gave her some leaflets and she put them up in the clinic” [F, age 55-64]

People who did have access to information from health care professionals valued it highly:
“Excellent. They know what is going to happen before it does! They treat me as a team member who is involved in decision making, not just a patient to do things to” [F, age 55-64]

The attitude of the health care professionals was also important, which can be linked to knowledge:
“The condition affects the whole body, the whole of your life. In find doctors often only look at individual symptoms instead of looking at you as a whole” [F, age 65-74]
“My Consultant rushes too much and doesn’t seem to like being asked questions, but his assistant who is a GP is fantastic, plenty of patience and doesn’t seem to mind how long things take” [F, 55-64]

Respondents who had access to specialist services found an improved level of information:
“Feel fortunate to have local Specialist centre. Help Nurses and ward staff very caring and approachable. Like having Day Unit specialising in infusions” [F, age 45-54]

Time was also an issue in the length of time between appointments, or the regularity of appointments;
“Six monthly check-ups are quite reassuring” [M, age 55-64]
“Excellent service, admitted to hospital on a regular basis for routine treatment and only have to pick up phone if there is an emergency” [F, age 55-64]

The information available from organisations such as the Raynaud's & Scleroderma Association was felt to be very important, but could be more widely publicised:
“Don’t explain what to look out for/ expect. Not enough information given verbally or in leaflet form from hospitals/ doctors. Only find out things through the Association” [F, age 45-54]

Dr Jane Richardson
Senior Lecturer in Health Services Research
Primary Care Musculoskeletal Research Centre, Keele University