Rheumatoid Arthritis and Chronic Fatigue

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RHEUMATOID ARTHRITIS AND CHRONIC FATIGUE LAUREN NICHOLSON PRODUCT DESIGN BSC PRODUCT RESEARCH 2, DP261 DR EDDY ELTON

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Contents

Introduction 1 Literature Review

2

Methodology 4 Research Findings

6

Persona 8 Image Board

9

URS 10 References 11


Introduction

‘To what extent does fatigue influence everyday life of rheumatoid arthritis suffers’ over the age of 65 in the UK?’

Rheumatoid arthritis (RA) is a chronic and progressive disease where the immune system attacks the synovial lining to the joints and other organs. If left untreated, the joint can lose its alignment, cause bone erosion and ultimately lead to permanent disability. It is a systemic disease, which means it can also affect internal organs of the body such as the heart, eyes and lungs

Infographics: Arthritis Research UK

60%

NRAS, 2014

There are nearly 690,000 people across the UK suffering with RA, and approximately 62 people in every 100,000 over 65s are diagnosed every year (Arthritis Research UK, 200-e). The disease is most commonly diagnosed between the ages of 40-50 (NRAS, 2014);

The risk of a heart attack 1 year after diagnosis, compared to someone without RA

as a consequence of it being a long-term condition with no known cure, and with 20,000 new diagnoses every year (BRS, 2014), there is a rapidly growing proportion of sufferer’s over the age of 65. It is a fast progressing disease, leaving 5% of sufferers with extensive disability (Arthritis Research UK, 200-f) and others experiencing symptoms ranging in severity including (but not restricted to) chronic disabling pain, inflammation, stiffness, chronic fatigue and reduced function and impaired mobility (NRAS, 2014). Preliminary research revealed that chronic fatigue, in particular, is an invisible

10%

AFFECTS

1%

OF UK POPULATION

symptom of the disease that can severely impact upon a person’s quality of life

Proportion of sufferers who will have severe lung complications as a result of their disease

and requires better understanding and management. It was for this reason that chronic fatigue was made the research focus of the report.

ANNUAL COST

AFFECTS

1%

OF WORLD’S POPULATION

OF RA TO THE NHS

The ratio of male to female sufferer’s of RA in the UK

£560 million

AFFECTS

5.6%

OF FEMALES OVER 65

AFFECTS

3.3% OF MALES OVER 65


Literature Review This literature review will investigate; the causes of chronic fatigue for rheumatoid arthritis (RA) sufferers, the symptoms caused by fatigue, the existing treatments, the significance of fatigue and the impact on the sufferer’s quality of life. The intention is to discover which element could be the most effectively tackled to improve their quality of life.

Neither the arthritis or pain can be eradicated,

1.3.1 Medical Fatigue can be caused by the arthritis itself, driven by the underlying mechanisms of the disease (Gossec, 2015). The chemical cytokines,

78%

produced when tissue is inflamed, is similar to that found in viral illnesses, such as colds and flu, which can cause extreme fatigue (Arthritis Research UK, 200-d).

said the public was not at all aware of chronic fatigue was a symptom of RA

fatigue in RA within medical literature (Hewlett, Chronic fatigue has however been

defined by the National Rheumatoid Arthritis Society (NRAS, 2014) as an ‘unpleasant, unusual, abnormal or excessive whole-body tiredness, disproportionate to or unrelated to activity or

onset of insomnia symptoms was twice as strong in participants with widespread pain (i.e. RA patients) compared with those with some pain (Tang, 2015).

In a study published by Selvan

(2012) 89% of patients reported interrupted

Chronic fatigue is constant or recurrent, it is not

find a comfortable sleeping position (Arthritis

dispelled easily by sleep or rest.’

Foundation,

200-a)

and

oversleeping

fatigue have compared it to

‘constantly wading through mud, or walking with bricks in your shoes. Sometimes lifting a cup, having a bath, or brushing your hair can involve more effort than you can imagine.’ NRAS, 2013a

sleeping pattern, which also results in fatigue

said that the public were not aware of the impact chronic fatigue could have CHRONIC FATIGUE 4.01

Details published by the Arthritis Foundation (200-

STIFFNESS 2.74

a) also suggests anaemia affects up to two thirds

PAIN 2.32

moves and muscles get tired faster, resulting in fatigue. Furthermore RA also increases the risk of a patient having Cachexia, muscle weakness,

SWELLING 1.93 Public understanding of RA symptoms Ranked 1 (most understood ) to 5 (least )

which causes muscle mass to decrease. Loss of muscle tissue means the remaining muscles have

1.3.2 Self-Treated RA can cause a loss of appetite, as stated by the NRAS (2013b), and the resulting weight loss can

if they are too tired to prepare proper meals they will end up eating unhealthy alternatives, or skipping meals all together, which only worsens the problem.

preparing the body for crisis, and constant stress leads to permanent mental and physical exhaustion (Arthritis Research UK, 200-d).

In

a study by Goodchild (2012) health focused

(Arthritis Research UK, 2013).

so that the body has to work harder every time it

will often be disregarded in the greater picture of

reaction to stress is to release adrenaline,

FLU SYMPTOMS 4

of RA patients, altering levels of iron in the blood

this is seen as a secondary symptom to pain and

A further issue is stress and anxiety. The bodies

and

napping during the day creates an unusual Those who experience chronic

83%

population. Swollen and sore joints can make it difficult to

however often have fatigue as a side effect, but

nutrition is the responsibility of the patient, but

sleep, compared with 41% in the general

exertion and present for more than one month.

use of drug treatments. These treatments will

impact on tiredness levels. Eating a diet rich in

down (Arthritis Research UK, 200-d), and the

There are no universally agreed definitions of

but efforts are made to manage them with the

the patient’s health (Arthritis UK, 200-d).

Constant feelings of pain can wear a person

1.2 Definition

to bear the burden of the moving body (Arthritis Foundation, 200-a).

1.3 Causes

1.1 Aim

2007).

DATA ACCOMPANYING SECTION 1.5

anxiety,

catastrophic

thinking,

rumination

(repetitive worrying) and a sense of mental defeat were linked to physical disability and acted as predictor for sleep interference. Some sufferers are guilty of ‘overdoing it.’ Coined ‘boom or bust’ behaviour it often results in lots of activity succeeded by several days of rest (Arthritis Research UK, 200-d). On the opposite end of the spectrum a study by Tang (2015) concluded that reduced social participation explained 66% of the effect of widespread pain

NRAS (2014)

on insomnia onset. ‘Targeting social participation


in older people with pain may buffer co-morbid

reported finding it difficult to plan ahead and

insomnia, reducing the overall disease burden.’

stick to arrangements. This caused strained

Depression also generates the feeling of fatigue (NRAS, 2014) and sufferers of RA are twice as likely as other individuals to experience it (BSR, 2013). This was emphasised by Goodchild’s findings (2012) where mental defeat emerged as a significant predictor for impaired functioning. Depression is brought on because the chronic

relationships with friends and family, and led to an avoidance of activity. As explored by Oslon (2007) this only escalates the problem because ‘avoidance of activity as a result of the fatigue is deconditioning, encouraging less exposure to positive mood-inducing events and a loss of social contact.’

pain causes unstable levels of hormones and

1.5 Significance of Problem

neurotransmitters such as serotonin in the brain

1.5.1 Role as a Primary Symptom

(Arthritis Foundation, 200-a)

Behind pain, fatigue is not considered one of the most important symptoms of RA, however it

1.4 Quality of Life As stated by Campbell (2012) ‘fatigue impacts on quality of life more than any other common symptom.’ It can have a severe impact on a person’s functional status, levels of depression, psychological distress and anxiety (Gossec, 2015) and can deter sufferers from simply getting out of bed in the morning because they are too

is argued that it has greater impact on daily life than pain (Feldthusen, 2013). Moderate to high levels of fatigue persist even when the pain of the arthritis and the other symptoms are mild and being effectively managed (Lee, 2014). The level of awareness fatigue receives is not proportionate to its severity and impact.

exhausted to get dressed, or eat properly (NRAS,

1.5.2 Lack of Awareness

2013a).

In a survey conducted by the NRAS (2013b) just

Fatigue is a major concern for RA patients (Hewlett, 2011) and a survey conducted by the NRAS (2014) found that for 90% of people RA related fatigue caused them to feel depressed

The Im

f Fatigue on Sh ct o pa

Quite Noticeable

a bit

of an

impact

impact 70% Very

much

more

21% difficult

11%

7D

symptom of RA, compared to the 95% who were able to identify joint swelling. Worryingly, only 41% of respondents who identified as having

% of over 65s who suffer from fatigue, and the % of those formally diagnosed

RA themselves, or having friends and family

Quite a bit of an impact

S AY

ABILITY TO S HO

E IN TH LAS

g erin ow

ER W

correctly able to identify chronic fatigue as a

Noticeable impact 70%

21% 11%

Very much more difficult NRAS (2014)

affected by it, were able to identify fatigue as a

1.5.3 An Ignored Symptom

symptom. The lack of knowledge about extreme

But how can the public be expected to be aware

fatigue among this group was much higher than

when health care professionals are similarly

expected and indicates that even those with the

guilty of ignoring the symptom? Fatigue occurs

personal connection to people with the disease

alongside other symptoms such chronic pain,

are not fully aware of how it affects them.

inflammation and reduced joint function, and

NRAS (2014)

within the last 7 days. In the study respondents

43% of respondents over the age of 65 were


consequently, and as stated in the NRAS’ 2014

The two most common management strategies

Survey, it is repetitively not given enough weight

for respondents in the NRAS 2014 were to reduce

when assessing a patient’s health, despite the

activity levels (72%) and increase sleep (57%). As

detrimental effect it can have on a person’s

explored under ‘causes’ however this can actually

quality of life.

make fatigue worse.

The sufferers themselves are guilty of not talking

Regular exercise is the most supported technique

to their healthcare professional about fatigue

for self-help. Being more physically active on high-

because they simply accept it a symptom

fatigue days has the ability to buffer the negative

of the disease (Repping-Wuts, 2009).

As

effect of fatigue on positive mood, by a variance

further investigated by Campbell (2012), poor

of 24.8% (Rosisin, 2015). Older participants of the

communication with clinical staff can be driven

study had a strong positive relationship between

by a perceived lack of sympathy and the limited

physical activity and positive mood.

availability of effective treatment.

In research

conducted by NRAS (2014), 16% of patients admitted to doing nothing to attempt to combat their fatigue and many admitted to having never attempted to talk to their GP or specialist nurse about it.

by

Katz

(1995)

hypothesised that physical activity may be particularly beneficial to RA sufferers because it provides them with a sense of achievement and engagement with valued or meaningful activities,

Secondry research is required because the Literature Review provided little research specific to the over 65s and the qualitative ‘human’ side of living with the disease every day. The research commenced with the recruitment of the participants at a RASCALS’ (a local Rheumatoid Arthritis society) tea and cake event at 2.45pm on Tuesday 3rd November 2015, at Wyevale Garden Centre in Kingston-near-Lewes. Six participants between the ages of 66 and 85 were successfully recruited from the 20+ attendees of the meeting. All the volunteers were female with the exception of one, which was reflective of the demographic of the meeting. The cultural probes were sent via post on the 13th November, completed between 14th and 19th and returned on 19th November at a second RASCALS’ organised event at St. Wilfred’s Church Hall, Pevensey Bay. The cultural probes were completed at the participants home’s situated across East Sussex. The probe consisted of a ten page booklet compromised of activities and a diary page to be completed once a day.

disengagement with valued activities, which is a

1.6.1 Clinical Intervention

risk factor for depressive symptoms.

Pharmaceutically there are no specific drug treatments that are currently available to treat arthritis related fatigue (NRAS, 2013a). As quoted by Tang (2015) pharmacological agents with hypnotic qualities are commonly used as the first line of treatment, although evidence to support their efficacy and safety beyond 6-12 months is limited.

1.7 Conclusion the mitigating effects that social interaction and physical activity can have on levels of chronic fatigue in RA sufferers over the age of 65. Investigation should be focused towards the their current methods of treatment to identify if a

There are a number of non-pharmacological used

to

help

manage

the

manifestation of chronic fatigue in RA, but insufficient evidence about their effectiveness (Cramp, 2013). These include, but are not restricted to, regular exercise, acupuncture, cogitative behaviour therapy, and occupational

Research Question and Objectives

‘To what extent does fatigue influence everyday life of rheumatoid arthritis suffers’ over the age of 65 in the UK?’

The project brief will be to research further into

sufferers emotional reaction’s to their disease and

1.6.2 Non-Pharmacological Intervention

therapy.

research

Research Outline

while being less physically active may represent

1.6 Treatment

interventions

Additionally,

Methodology

more human-inspired perspective of treatment would be more effective.

QUANTITATIVE A1: Record participants fatigue levels

QUALITIATIVE B1: Record how often the participants talk

throughout the day to establish when it is

about their fatigue, and who they talk with.

best and worst

B2: Record the participants emotional

A2: Record how often fatigue stops

reactions to activities and past times

participant from doing something

B3: Record the participants emotional

A3: Record how many meals the

reactions to rooms of the house and the

participant eats and their dietary habits

tasks associated with them

A4: Record the number of hours sleep

B4: Find out what the participants consider

and sleeping habits

to be the causes of their RA B5: Find out what participants feel is the most frustrating part of their disease


The advantages of a cultural probe

and daily routine.

The advantages of a cultural probe are well

Furthermore, as explored by Murphy (2006)

explored in Wherton’s ‘Designing assisted living technologies ‘in the wild’: preliminary experiences with cultural probe methodology’ (2012). In the methodology Wherton outlines the main advantage as the probe’s ability to ‘offer a relatively unobtrusive way of providing insight into how technology could fit into a particular home environment.’

The other advantages

outlined in the methodology are below. 1. Cultural probes can support conversation between the researcher and participant, thereby helping to overcome power imbalanced between them. The method allows the participant to have a certain level of control in what information they share, and how they express themselves. 2. Cultural probes are incredibly diverse. They can offer ‘the lived experience, physical limitations and emotional significance of the domestic space; what the key social relationships are and how these play out.’ 3. The participant is an active contributor to the research. As an ‘expert’ in his or her own life their participation is encouraged, rather than them being a passive subject. This again can strengthen the relationship with the researcher and welcome a more forthcoming response. 4. Probes can add personal meaning and significance to data by enriching it with desires, emotions and intentions. 5. Probes are capable of capturing mundane and everyday actions, places, objects and people. The data is in an autobiographical (narrative) format, providing insights into their life stories

cultural

probes

give

the

opportunity

to

document their lives in their own context with minimal interference from the designer and on a large scale it can be cost saving and less time consuming. The data collection is left to the user

A cultural probe is a qualitative research method, and using the definitions set out in Robson’s Real World Research (2012) it can also be categorised as a flexible design research strategy. The cultural probe was first used on the Presence Project in 1999 by designers Gaver, Dunne and Pancenti (Gaver, Jan/Feb 1999) Gaver described it as ‘packages of maps, postcards and other materials… designed to provoke inspirational responses,’(Gaver, Jan/ Feb 1999)

leaving the researcher to solely focus on the analysis of the data.

EXTRACTS FROM DIARY STUDY

2.1.5 Why was this method preferable to others?

The limitations of a cultural probe Although a limitation of the data analysis method as opposed to the probe itself, Gaver (Sept/Oct

SIMPLE SNAPSHOTS

Has fatigue ever stopped you from every day tasks? Is there a place in the home where you feel in better control of your fatigue? Draw or write how you feel about what you get up to in each room.

1999) criticises the tendency to rationalize the

The cultural probe was the most appropriate

DAILY DIARY 6AM

12PM

DAY 1

lack of routine or structure in the participant’s life,

6PM

12AM

probes. ‘People seem unsatisfied by the playful, subjective approach… so design theirs to ask specific questions and produce comprehensible

BEDROOM

KITCHEN

Don’t like today’s prompt? Use this space to write down anything else you have been feeling or to make notes on the activity.

disadvantaged because it must strike a balance between keeping the user focused and interested without being too prescription. Too restrictive and there is a risk that inspiration and design ideas will be lost. On the other hand a lack of focus can lead to ‘noisy’ data that is difficult to analyse and does not provide any useful design insights. Furthermore, cultural probes require elapsed time, which is not always available in a

DAILY DIARY

DAY 2

Rate on the scale from low (no affect on energy levels) to high (you will avoid this activity because of how it will make you feel.)

FATIGUE GETS IN THE WAY BY... 6AM

12PM

6PM

12AM

FATIGUE SCALE LOW

HIGH

FATIGUE GETS IN THE WAY BY...

PROMPT: WHEN DO YOU NOTICE YOUR FATIGUE THE MOST? Don’t like today’s prompt? Use this space to write down anything else you have been feeling or to make notes on the activity.

FATIGUE SCALE LOW

HIGH

FATIGUE SCALE

GETTING TO THE ROOT LOW

HIGH

DAILY DIARY

DAY 3

the data lacks substance making their translation to design insights trickier.

considerably day to day. Fatigue is a constant feeling and not a single event to be observed and discussed. In addition, this type of research would have to be conducted in the participant’s ethical issues, as well as unreliability in the data as they are conscious of being watched. Some areas of interest would be unobservable, such as

In the pocket below are 10 cards with causes of fatigue printed on them, and a brief explanation of how they cause fatigue on the back. Order the cards from the most to least relevant to you and (keeping them in order) put them back in the pocket, discarding any that don’t apply to you.

is less helpful in the study of fatigue because

primary environment, their home. This could raise

FATIGUE GETS IN THE WAY BY...

6AM

12PM

6PM

12AM

night’s sleep, and only accessible with the use of a cultural probe or diary study.

PROMPT: ANSWER THE QUESTIONS BELOW

way of collecting quantitative data, and some of

in the collection of the data. This looks at what the

fatigue can impact everything they do and varies

What do you love doing? Write the activity in the heart and look at how fatigue gets in the way.

tight schedule. Lastly, cultural probes are not the most efficient

involve the researcher being an active participant user does in comparison to how they feel, which

BATHROOM WHAT DO YOU LOVE?

In addition, Murphy notes that the probe is

as observation would not’ (Murphy, 2006). Design ethnographies and contextual enquiries

PROMPT: WHAT ARE YOUR TOP TIPS FOR DEALING WITH FATIGUE?

results. They summarize the result, analyse them…’

method because it was able to ‘work around a

1. When was the last time fatigue stopped you from doing something? 2. Did you eat three meals today? Is this typical of most days? 3. How many hours sleep did you get last night? 4. How restful was your nights sleep?

Empathetic modelling was not appropriate because fatigue is not a condition that can be easily simulated in non-sufferers.

5. Did you nap today nap/ rest today?

FULL VERSION OF METHODOLOGY AVAILABLE IN THE APPENDIX (Inc. Methodologies’ References.)


Research Findings

80%

Selection of Words from Diary

16.4

said that they require a nap in the afternoon almost everyday

range 7-23

Rest required as mornings medicine tends to start wearing off.

4 the number of naps needed by some participants

Average number of years diagnosed with RA

aged 66-85

76.6

‘I just have to rest. If I don’t I am out of action for at least 3 days.’

Who do you talk to? The RA group Partner

Wake up feeling stiff and unrested, until morning’s medicine begins to take effect

AVERAGE OF 5 DAYS FROM 5 PARTICPANTS

KEY COMMENTS They feel as if they are losing a

6AM

part of their identity to fatigue. hobbies they love.

WEAKNESS PAIN Most common causes of participant’s fatigue in descending order.

12PM

Bedroom is seen as a prison they place where they can no longer feel enjoyment

DRUG TREATMENTS SLEEP DISTURBANCE

6PM 12PM

No longer able to partake in the

cannot leave, and the kitchen is a

OVERDOING IT

‘Everyday is different, but tiredness and pain are guaranteed.’

2 are carers for their partners, putting additional pressure on their fatigue. General feeling of wasted time. They aren’t able to achieve anything with their lives.

4:00

Lunch times pick up. Usually spent with friends or family Takes a long time to get member. ready for bed. Evenings can be incredibly tricky.

Average number of hours of sleep acheived per night. Lowest was 1 hour, and the hghest was just 6 hours.

RESTLESS: WAKING HOURLY


Shops

Fatigue and Daily Life

Frustration

Positivity

Anxiety

Sadness

ESS EVER Y TR

S

Bedroom DRE SS

RESTLESS

Bathroom

Appointments

D

UNWANTE

THE BA

ABLE TO UN

G IN

EEP SL

ED EB

RNING z MO

KING T H MA

WORN

DOCTOR

ST OF TH RE E

S NAP

FOR TH UT E O

Y DA

A PROBL E TR

RY ABO OR U W

N’T STAND CA

PAYING G

GI MIN S EX M

ENJOY N’T I O

R

S BEFORE TA

SY AND R BU

HED US

NG OVI M

OUT ING + BE

USTING HA

SHOPS

A

FA

Activity R LONG FO

N’T WALK CA

R DNE R AR

CIEVING RE

ORS SIT VI

BEFORE

OTHERS

SOME IRE

ITTING IS T KN

Shopping TO

READING

URITE RO VO

LOST PA S

IME ST

P

N

N SIO

LOST PA S

M O

LIANCE RE O

IS DISTR TV

LL ASLE FA E

TING AC

NG LE RITI T W

B RS / ILLS TE

STORED IS

N’T OPEN CA

CKAGING PA

DICATIO N ME

Garden

D

Living Room

SW I

Kitchen

S

GYM

SHOP


Persona

Once the keen cook, Judy is now struggling to stand for long enough periods of time to prepare food, and finds it increasingly difficult to grasp hold of the knife. If this was not frustrating enough,

Introducing Judy

she is having to pass on this role to her husband,

Judy King, 76. is a retired teaching assistant, living

despite his own problems.

in Seaford, East Sussex with her husband Frank, 83, for whom she has recently started to care for.

Drivers

They have two children and three grandchildren

Judy is incredibly family orientated, and being

together.

able to keep up with Frank ‘s is her main drier. Additionally Judy wants to be able to look after

“With my RA I have gotten used to not being able to live at quite the same pace as before, but in the last few months I’ve hit a real stumbling block with my fatigue, and I can’t even begin to tell you how awful it is making me feel. For Frank’s sake, and for the sake of my social life, I need to get this under control!”

disease for over 10 years. Over these years Judy

1. Judy’s life goal would be to get her disease under control enough that would allow for her and Frank to go on a cruise together, and to be able to enjoy the experience worry free. 2. An experience goal for Judy would be to find

Ph on e

ets l b

Ta

m

art

Although not keen on technology, Judy is competent

D

ways of reworking physical activity, and the social

S

her early 60s, and has been managing with the

Goals

SKILLS

Judy was diagnosed with rheumatoid arthritis in

her grandchilden

te x e

r it y

and can use a tablet device to Skype her children and place

has tried to ignore the disease progressing, but it

online shopping orders

is in the last few months that she has noticed a real degradation in her health- with more frequent and more chronic flare-ups in her hands and wrists,

As she has said for many years, Judy is reluctant

and going for walks in the local Sussex Downs.

side of physical activity back into her life. She

to try alternative treatments such as cognitive

Judy loves to be around people, and was a

finds friends and excersise can ellivate her mood.

days on end.

behaviours therapy and acupuncture and is

regular attendee of yoga and swimming classes

Judy has never been someone to make a fuss

looking for a different type of product or service

at the local sports centre.

to assist her.

but in particular sudden spells of chronic fatigue which are seeing her confined to the house for

or pull focus towards herself, but Judy’s doctor believes the newly added stress of caring for her husband is impacting her well-being and believes it is time she started trying to mitigate some of her symptoms.

Frustrations

Motivations

Not being able to get out of the house is making

Judy is naturally a very active person, and for

Judy feel very restricted, and having to watch her

many years she was a keen cook and baker. She

garden become incredibly over grown and not

enjoys her time outdoors, tending to her garden

being able to sort it is making her very agitated.

3. An end goal of Judy’s is to be able to enjoy her home once again. Her house has become a place of illness, where she feels trapped and confined. Finding a way s for her to enjoy her passions, such as cooking and gardening would improve her environment and overall well-being.


Image Board

PERIE X E R E N S CE U


User Requirement Specification A1: The product must encourage the user to increase their activity level.

the sufferer to try and combat the effects with

of social participation can also reduce RA

movement.

symptoms. Having a support network reduces

The research report shows that one of the key

B3: The product should have the durability of at least 2 years

ways to combat fatigue is to increase activity levels. Increased activity can provide a sense of well being and suppress other symptoms.

A2: The product must be operable with hand Research showed that RA sufferers have varying levels of dexterity in their hands. The ability to work with one hand demands it to be relatively simple design, which the user could operate in whatever manner feasible to them at the time and dependent of their flare-ups. This also forces the product to be ‘hand’ size and therefore portable.

B1: The product should both visually and audibly alert the user of their activity level Research showed that RA affects the sufferer’s whole body, including eyes. This means a higher proportion ofRA sufferers have deteriorating eye sight than the rest of the population. Additionally, RA sufferers are just as likely to have age related decline, e.g. worse hearing, as any other over 65.

B2: The product should be able to function correctly indoors and outdoors The product is being designed to increase activity, which could be indoors or outdoors depending on the user. It is important the the device is able to support the user wherever they choose to excursus, even if that is in wet or damp conditions. Research showed that RA get worse during cold and wet spells, this may encourage

The product must be durable because the user is relying on it on a daily basis to assess their

isolation and it is easier to stay on track.

B8: The product must not require charging more than once a week (even when being used frequently)

level of activity. After 2 years the user may have

The product should be available to use all times.

adapted their lifestyle and will no longer rely on

If it is constantly on charge the user may forget

the alerts of the device to up their activity levels.

or it might not be ready when they need it to.

B4: The product should be no more than 7cm x 7cm in size

B9: The product must be able to withstand being dropped

The product must be roughly smaller than this size

In order to account for the poor dexterity of RA

to allow it to fit in the hand, making it portable for

sufferers, especially those who suffer flare ups

a range of physical activities. RA

in their hands and wrists.

struggle with

walking and general moment, and if the product was any bigger thy may not take it with them because it would impede them further.

B10: The product must use technology efficiently, maximising the users experience whilst not being too complex to use.

B5: The product cost must be kept as low as possible

Many over 65s have had limited access to

This is so that the product could be considered

by the idea. It is important that the product is

as affordable to those living on pensions, and is

accessible to all and it is not just those with

accessible to all sufferers.

prior experience of electronic devices who are

B6: The product weight must be kept as low as possible This will account for muscle weakness in RA sufferers, especially in the hands and wrists.

B7: The product must incorporate a way of connecting the user to other people. In addition to increased activity, greater levels

modern technology and may be intimated

able to use the product.

References

Arthritis Foundation. (200-a) How to Beat Fatigue. [Online] Available at: http://www.arthritis.org/ living-with-arthritis/pain-management/fatigue/beatfatigue.php [Accessed at 2 November 2015] Arthritis Research UK. (200-d) What causes fatigue? [Online] Available at: http://www.arthritisresearchuk.org/ arthritis-information/arthritis-and-daily-life/fatigue/ causes-of-fatigue.aspx [Accessed 3 November 2015] Arthritis Research UK. (200-e) Rheumatoid Arthritis. [Online] Available at: http://www.arthritisresearchuk. org/arthritis-information/data-and-statistics/databy-condition/rheumatoid-arthritis.aspx [Accessed 3 November 2015] Arthritis Research UK. (200-f) What is the outlook for Rheumatoid Arthritis? [Online] Available at: http:// www.arthritisresearchuk.org/arthritis-information/ conditions/rheumatoid-arthritis/outlook.aspx [Accessed 3 November 2015] Arthritis Research UK. (2013) Sleep and Arthritis. [PDF] UK: Arthritis Research UK. Available at: http://www. arthritisresearchuk.org/arthritis-information/arthritisand-daily-life/sleep-and-arthritis.aspx [Accessed 3 November 2015] British Society for Rheumatology (2013) Simple Tasks Rheumatology in the UK: The problem. The impact. The solutions. [PDF] UK: BSR. Available at: http:// www.rheumatology.org.uk/includes/documents/ cm_docs/2013/w/white_paper_report.pdf [Accessed 4 November 2015] Feldthusen C., et al. (2013) Perception, consequences, communication, and strategies for handling fatigue in persons with rheumatoid arthritis of working age—a focus group study. Clin Rheumatol, [e-journal] (32) pp. 557–566. Available at: http://search.proquest.com.ezproxy. brighton.ac.uk/docview/1355249704?pqorigsite=summon&accountid=9727 [Accessed 2 November 2015] Accessed via: National Rheumatoid Arthritis Society. (2014) Invisible Disease: Rheumatoid Arthritis and Chronic Fatigue Survey 2014. [PDF] UK: NRAS. Available at: http:// www.nras.org.uk/invisible-disease-rheumatoidarthritis-and-chronic-fatigue-report Campbell, R., et al. (2012). The Impact of Fatigue in Patients with Idiopathic Inflammatory Myopathy: A Mixed Method Study. Rheumatology, [e-journal]


51 (3), p. 93. Available at: http://rheumatology. oxfordjournals.org/content/51/suppl_3/iii93. abstract?sid=4bc513f0-d737-4bf8-b4a212e45cf38866 [Accessed 6 November 2015] Cramp, F., et al. (2013) Non-pharmacological interventions for fatigue in rheumatoid arthritis. The Cochrane database of systematic reviews. [abstract only] 8. Available via: http://brighton.summon. serialssolutions.com/search?utf8=✓&s.q=Non-Pha rmacological+Interventions+for+Fatigue+in+Rheu matoid+Arthritis.#!/search/document?ho=t&l=enUK&q=Non-Pharmacological%20 Interventions%20for%20Fatigue%20in%20 Rheumatoid%20Arthritis.&id=FETCHMERGEDLOGICAL-p835-ea993cf1c4 Gaver, W., et al. (Jan/ Feb 1999) Design: Cultural Probes. Interactions Magazine. 6(1) pp.21-29. Gaver, W., et al. (Sept/Nov 1999) Cultural Probes and the Value of Uncertainty. Interactions- Funology. [Online] 11(5) pp.53-56. Available at: http:// research.gold.ac.uk/4720/ [Accessed 4 November 2015] Goodchild, C.E., et al. (2012). An Investigation of Psychological Characteristics linked to Physical Activity and Sleep in Rheumatoid Arthritis. Rheumatology, [e-journal] 51 (3), p. 113. Available at: http://rheumatology.oxfordjournals.org/ content/51/suppl_3/iii93.abstract?sid=4bc513f0d737-4bf8-b4a2-12e45cf38866 [Accessed 8 November 2015] Gossec, L., et al. (2015). Fatigue in Rheumatoid Arthritis: Quantitative Findings on the Efficacy of Tozilizumab and on Factors Associated with Fatigue. The French Multicentre Prospective PEPS Study. Clinical and Experimental Rheumatology, [e-journal] 33 (5), p. 664-670. Available at: http:// www.clinexprheumatol.org/a.asp?IDArchivio=175 [Accessed at 15 November 2015] Hewlett, S. et al (2007) Measuring Fatigue in Rheumatoid Arthritis: A systemic review of scales in use. Arthritis Rheum [e-journal] 57 (3), pp. 429439. Available at: http://www.ncbi.nlm.nih.gov/ pubmed/17394228 [Accessed 12 November 2015] Hewlett, S., et al. (2011) Self-Management of fatigue in rheumatoid arthritis: A randomised controlled trial of group cognitive-behavioural therapy. Ann Rheum Dis, [e-journal] 70. Available at: http://ard. bmj.com.ezproxy.brighton.ac.uk/content/70/6/1060 [Accessed 3 November 2015] Accessed via: National Rheumatoid Arthritis Society. (2014) Invisible Disease: Rheumatoid Arthritis and Chronic Fatigue Survey 2014. [PDF] UK: NRAS. Available at: http://www.

nras.org.uk/invisible-disease-rheumatoid-arthritisand-chronic-fatigue-report Hooper, R. (200-) Justifying Sample Size for a Feasibility Study. Research Design Service London for the National Institute for Health Research [PDF] Available at: http://www.rds-london.nihr.ac.uk/ RDSLondon/media/RDSContent/files/PDFs/ Justifying-Sample-Size-for-a-Feasibility-Study.pdf [Accessed 16 November 2015] Katz, P.P., and Yelin, E.H. (1995) The development of depressive symptoms among women with rheumatoid arthritis the role of function. Arthritis & Rheumatism, [e-journal] 38 (1), p. 49–56. Available at: http://onlinelibrary.wiley.com/doi/10.1002/ art.1780380108/abstract [Accessed at 5 November 2015] Lee, Y.C., et al. (2014) Subgrouping of Rheumatoid Arthritis Patients Based on Pain, Fatigue, Inflammation and Psychosocial Factors. Arthritis Rheumatol, [e-journal] 66 (8). Available at: http:// onlinelibrary.wiley.com/doi/10.1002/art.38682/ Murphy, J. (2006). Cultural Probes: Understanding Users in Context. User Experience Magazine. [online] 5(3). Available at: http://uxpamagazine.org/cultural_ probes/ [Accessed 9 November 2015] National Institute for Health Research (200-) Evaluation, Trials and Studies Glossary. [Online] Available at: http://www.nets.nihr.ac.uk/glossary/feasibilitystudies [Accessed 19 November 2015]

Oslon, K. (2007). A New Way of Thinking About Fatigue: A Reconceptualization. Oncology Nursing Forum, [e-journal] 34 (1), Abstact only. Available at: https://onf.ons.org/sites/default/ files/3067X6J413582084_first.pdf [Accessed 14 November 2015] PatientView. (2009) Patient Groups on Rheumatoid Arthritis and the NHS: A national survey of patient organisations and other health campaigners. [PDF] Available at: https://www.nao.org.uk/wp-content/ uploads/2009/07/0809823_patientview.pdf [Accessed 3 November 2015] Repping-Wuts, J.W.J., et al. (2009) Fatigue in patients with rheumatoid arthritis: what is known and what is needed. Rheumatology. [e-journal] 48(3). Available at: http://rheumatology.oxfordjournals.org/ content/48/3/207#cited-by [Accessed 6 November 2015] Robson, C. (2002). Real World Research: a resource for social scientists and practitioner-researchers. 2nd Edition. Oxford: Blackwell. Rosisin, S., et al. (2015) Feel the Fatigue and Be Active Anyway: Physical Activity on High-Fatigue Days Protects Adults With Arthritis From Decrements in Same-Day Positive Mood. Arthritis Care & Research, [e-journal] 67 (9), p.1230-1236. Available at: http:// onlinelibrary.wiley.com/doi/10.1002/acr.22582/ epdf [Accessed 15 November 2015]

National Rheumatoid Arthritis Society. (2013a) Fatigue Beyond Tiredness. [PDF] UK: Roche Product Ltd and Chugai Pharma UK Ltd. Available at: www.nras.org. uk/data/files/.../Fatigue%20Beyond%20Tiredness. pdf [Accessed at 1 November 2015]

Selvan, S., and Williamson, L. (2012). Good Sleep Hygiene May Improve Pain in Inflammatory Arthritis. Rheumatology, [e-journal] 51 (3), p. 113. Available at: http://rheumatology.oxfordjournals.org/ content/51/suppl_3/iii93.abstract?sid=4bc513f0d737-4bf8-b4a2-12e45cf38866 [Accessed 5 November 2015]

National Rheumatoid Arthritis Society. (2013b) Breaking Down Barriers: Rheumatoid Arthritis and Public Awareness. [PDF] Available at: http://www.nras.org. uk/data/files/Publications/Breaking%20Down%20 Barriers.pdf Accessed Via: The British Society of Rheumatology. (200-) Simple Tasks: Fast Facts. [PDF] UK: NRAS. Available at: http://www.rheumatology. org.uk/patient_information/simple_tasks/ downloadable_content.aspx [Accessed 1 November 2015]

Symmons, D., et al. (1994) The incidence of Rheumatoid Arthritis In the United Kingdom: Results from the Norfolk Arthritis Register. Journal of Rheumatology. [e-journal] 33(8), pp.735-739. Available at: http://rheumatology.oxfordjournals. org/content/33/8/735.long?hwshib2=authn%3A1 448576798%3A20151125%253A4a4a0ba2-200749eb-b8e0-08c69aff6d68%3A0%3A0%3A0%3AtnR lbKN5%2Fw95sjg1foPOPQ%3D%3D [Accessed 15 November 2015]

National Rheumatoid Arthritis Society. (2014) Invisible Disease: Rheumatoid Arthritis and Chronic Fatigue Survey 2014. [PDF] UK: NRAS. Available at: http:// www.nras.org.uk/invisible-disease-rheumatoidarthritis-and-chronic-fatigue-report [Accessed 1 November]

Tang, N.K.T., et al. (2015). Impact of Musculoskeletal Pain on Insomnia Onset: A Prospective Cohort Study. Rheumatology, [e-journal] 54 (1), p. 248-256. Available at: http://rheumatology.oxfordjournals. org/content/54/2/248.abstract?sid=a303f9ee-fb244504-990d-e96d3c3faa1a [Accessed 6 November 2015]

The World Health Organisation (2011) Standards and Operational Guidance for Ethics Review of Health related review of health-related research with human participants. [PDF] p.22. Available at: http://apps.who.int/iris/ bitstream/10665/44783/1/9789241502948_eng. pdf [Accessed 12 November 2015] Wherton, J. et al. (2012) Design assisted living technologies ‘in the wild’: preliminary experiences with cultural probe methodology. BMC Medical Research Methodology. [e-journal] 12 (188) Available at: http://www.biomedcentral.com/14712288/12/188 [Accessed 14 November 2015]



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