Open Access Research What is the impact of giant cell ... · adaptations to their everyday lives. IntrOductIOn Giant cell arteritis (GCA) is the the most common form of primary systemic

1Liddle J, et al. BMJ Open 2017;7:e017073. doi:10.1136/bmjopen-2017-017073

Open Access

AbstrActObjectives Clinical management of giant cell arteritis (GCA) involves balancing the risks and burdens arising from the disease with those arising from treatment, but there is little research on the nature of those burdens. We aimed to explore the impact of giant cell arteritis (GCA) and its treatment on patients’ lives.Methods UK patients with GCA participated in semi-structured telephone interviews. Inductive thematic analysis was employed.results 24 participants were recruited (age: 65–92 years, time since diagnosis: 2 months to >6 years). The overarching themes from analysis were: ongoing symptoms of the disease and its treatment; and ‘life-changing’ impacts. The overall impact of GCA on patients’ lives arose from a changing combination of symptoms, side effects, adaptations to everyday life and impacts on sense of normality. Important factors contributing to loss of normality were glucocorticoid-related treatment burdens and fear about possible future loss of vision.conclusions The impact of GCA in patients’ everyday lives can be substantial, multifaceted and ongoing despite apparent control of disease activity. The findings of this study will help doctors better understand patient priorities, legitimise patients’ experiences of GCA and work with patients to set realistic treatment goals and plan adaptations to their everyday lives.

IntrOductIOnGiant cell arteritis (GCA) is the the most common form of primary systemic vasculitis and primarily affects older people.1 2 The vasculitic process may result in ischaemic manifestations such as anterior ischaemic optic neuropathy or jaw claudication, which may produce groups of character-istic symptoms leading to clinical diagnosis. Presentation may, however, be non-specific with systemic features such as fever and weight loss and in this case diagnosis is facilitated by laboratory, histological and imaging tests.

The mainstay of treatment remains high-dose glucocorticoids (initially 40–60 mg of prednisone equivalent), aiming to control disease activity. The dose is subsequently tapered gradually over several years but

is increased in the face of relapse. Gluco-corticoid-related adverse effects result in considerable morbidity in this patient population.3 Thus, clinical management of GCA involves a balance between the risks and burdens of the disease, and the risks and burdens of the treatment. Much has been written about this from the medical perspective; the sparse literature about patient priorities in GCA suggests that patient priorities for GCA include vision, control of arms and legs and personal care abilities.4 Qualitative research to develop patient-relevant outcome measures in large-vessel vasculitis has been conducted with patients with Takayasu arteritis, a rarer form of large-vessel vasculitis that affects younger adults,5 but the experience of older patients

What is the impact of giant cell arteritis on patients’ lives? A UK qualitative study

Jennifer Liddle,1,2 Roisin Bartlam,1 Christian D Mallen,1 Sarah L Mackie,3 James A Prior,1 Toby Helliwell,1 Jane C Richardson1

To cite: Liddle J, Bartlam R, Mallen CD, et al. What is the impact of giant cell arteritis on patients’ lives? A UK qualitative study. BMJ Open 2017;7:e017073. doi:10.1136/bmjopen-2017-017073

► Prepublication history for this paper is available online. To view these files, please visit the journal online (http:// dx. doi. org/ 10. 1136/ bmjopen- 2017- 017073).

Received 30 March 2017Revised 2 June 2017Accepted 16 June 2017

1Research Institute for Primary Care and Health Sciences, Keele University, Keele, UK2Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK3Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK

correspondence toDr Jennifer Liddle; jennifer. liddle@ newcastle. ac. uk

Research

strengths and limitations of this study

► This study provides the first qualitative analysis of the impact of GCA and its treatment on patients’ everyday lives.

► Two approaches to sampling were adopted in recognition that patients associated with the charity PMRGCAuk were unlikely to be representative of all GCA patients, and we also acknowledge that patients who felt that GCA had a large impact on their lives may have been more likely to volunteer to participate.

► Interviews were conducted with a sample of people from different social backgrounds and age groups; future research might actively aim to recruit people from a range of ethnic and cultural groups.

► The data presented are based on patients’ retrospective accounts of their experiences, which may change with time.

► Our methods did not allow us to verify the clinical diagnosis of GCA from participants’ medical records or the results of medical tests they had undergone, but the fact that all participants were able to describe their glucocorticoid treatment provided reassurance that our sampling strategy identified individuals from the population of interest.

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with GCA remains relatively unexplored. According to Borg and Davidson, ‘when it comes to understanding recovery, the trivialities of everyday life must be seen as anything but trivial’.6 In order to understand how best to help patients recover from their illness, we aimed to examine GCA and its treatment from the patient perspective, through the lens of its impact on patients’ everyday lives.

MethOdsDesignThis was a qualitative study using semi-structured tele-phone interviews and inductive thematic analysis of data. The study received ethical approval from Keele Univer-sity’s Research Ethics Committee (Ref. ERP2254) and verbal and written consent was obtained from all partici-pants (a completed paper consent form was posted back to the research team by the participant after each inter-view).

Participants and data collectionParticipants were recruited using two approaches. First, letters were sent to patients with GCA who had taken part in a cross-sectional survey, recruited through general prac-tice medical records, and who had consented to further contact. Second, an email was circulated by the UK charity PMRGCAuk to its regional groups and members, inviting patients to contact the research team for further information. Only patients who reported that a clinician had diagnosed GCA were included. Purposive sampling categories included age, gender and time since diagnosis. JL and CDM developed a list of topics and prompts to guide interview discussions.

Following informed consent, RB conducted and audio-recorded semi-structured telephone interviews with recruited patients with GCA until the point where the research team agreed there were ‘diminishing returns’ from further data collection and that data saturation was sufficient.7–9 Brief fieldnotes were written after each inter-view to record thoughts about emerging analytic themes and data coding.

AnalysisAll interview recordings were transcribed and pseud-onyms used to preserve participant confidentiality. An inductive thematic approach was taken to analysis.10 RB completed an initial categorising and line-by-line coding of all data from the transcripts using QSR NVivo V.10 and discussed the development of codes and themes with JL. JL then continued with additional analysis (in discussion with JR and CDM), developing codes and themes focusing specifically on the impact of symptoms and treatment on patients’ everyday lives. After further discussion, JL and JR developed a visual representation of these themes (figure 1).

resultsParticipants’ ages ranged from 65 to 92 years and time since diagnosis ranged from 2 months to over 6 years. All participants were White British (table 1). Interviews lasted between 29 and 128 min. One transcript was excluded from analysis because the patient contacted the research team to say that her diagnosis of GCA had been changed to a diagnosis of lymphoma.

Patients did not conceptualise the impact of GCA as a set of discrete symptoms or side effects, but as an ongoing experience, changing over time, resulting from the combination and co-occurrence of multiple factors. Figure 1 is a visual representation of subthemes and codes within the data, demonstrating the psychological impacts, symptoms and side effects that patients experienced, and the aspects of their everyday lives requiring adapta-tion as a result. Patients were often unable to distinguish between disease-related symptoms and treatment-related side effects and did not make a distinction in terms of impact; the impact and combination of the experiences was most important to patients, regardless of the cause. Presentation of findings reflects this.

Two overarching themes from the qualitative data are presented: ongoing symptoms of the disease and its treat-ment and ‘life-changing’ impacts.

theme 1: ongoing symptoms of the disease and its treatmentPatients gave detailed accounts of the symptoms of their disease and its treatment that impacted on their everyday lives, ranging from extreme to minimal. The data in tables 2 and 3 illustrate the extent to which the experi-ence of GCA and its treatment varied between patients, in both type and duration.

Types of symptoms"The effects it had on me, my body and my mind as well…"Fatigue, pain, sight loss, other visual symptoms, changes in mood and changes in physical appearance and sleep (table 2) were particularly reported as having implica-tions for the extent to which patients could continue living their lives in the same way as they had done before the onset of GCA. The experience of permanent visual loss was associated with feelings of bereavement and vulnerability. Other generalised, persistent symptoms such as dizziness and loss of strength were also reported by patients.

Duration of impact“He says, ‘I’m going to give you a course of treatment’, he says, ‘which is gonna last for some time—more like years than weeks’, he says, ‘but it will control it and hopefully we can stop it’.”The experiences of patients varied widely, with some reporting that the impact of GCA and/or its treatment on their everyday lives had continued for many years after diagnosis (up to 5 years, and longer for those who developed new features such as sight loss), while others reported that the impact of GCA and/or its treatment on their lives had been relatively short-lived.



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Figure 1 This diagram represents the multiple physical and psychological symptoms experienced by patients living with a diagnosis of giant cell arteritis (GCA) (inner circle), and the multiple domains of daily living (outer circle) that these symptoms can impact on. The arrows denote the rotation of each circle, with the intention of visually representing the ability of individual/groups of symptoms to impact on multiple domains of daily living. The rotation also indicates the potential for the relative importance and impact of each factor to vary over time due to fluctuations in the underlying disease, the dose and duration of glucocorticoid treatment, the influence of comorbidities and changes in individual adaptations and approaches to self-management.

The impact of symptoms could be categorised as: a) minimal or no long-term impact; b) continuing symptoms over time periods ranging from weeks to years or c) changes in health as a result of permanent visual loss and/or new health problems that now required management (table 3). There were no particular differences between the impacts or types of symptoms that were experienced minimally and those that became long-term.

Some patients had both long-term and permanent impacts. While some of those who experienced long-term impacts and symptoms reported that these resolved or diminished in the months and years following the initi-ation of treatment, others had not yet perceived such improvements. In particular, the continuation of non-spe-cific symptoms (table 2) caused confusion and frustration for patients, especially in the context of being told that their inflammatory marker test results were within the normal range.

theme 2: ‘life-changing’ impactsPatients whose symptoms had resolved quickly did not feel that GCA had changed their lives. However, the ongoing impacts of GCA symptoms and treatment side effects were described as being ‘life changing’ (Cressida, 62, 5 years 5 months since diagnosis) and ‘restricting my life totally’ (Dorothy, 78, 2 years 11 months since diagnosis).

Activities, behaviours and circumstances"I just used the energy on what I absolutely had to do and everything else was on hold"Those patients with ongoing symptoms of GCA and its treatment generally described how these had substan-tially affected their everyday lives including aspects of life such as: work and voluntary roles; relationships; hobbies, social and leisure activities; household tasks, daily routines and personal care; financial circumstances and driving (table 4).



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Table 1 Sociodemographic characteristics of sample (n=24)

Male(%) n=9

Female(%) n=15

Total(%) n=24

Age group at interview (years)

60–69 1 (11) 4 (27) 5 (21)

70–79 7 (78) 9 (60) 16 (67)

80–89 – 2 (13) 2 (8)

90–99 1 (11) – 1 (4)

Time since diagnosis (months)

≤12 – 4 (27) 4 (17)

13–24 3 (33) 3 (20) 6 (25)

25–36 4 (44) 3 (20) 7 (29)

37–48 1 (11) 1 (7) 2 (8)

49–60 – 2 (13) 2 (8)

≥61 1 (11) 2 (13) 3 (13)

Ethnicity/nationality

White British 9 (100) 15 (100) 24 (100)

Living arrangements

Alone – 5 (33) 5 (21)

With one other person 9 (100) 10 (67) 19 (79)

Marital status

Married/long-term partner 9 (100) 10 (67) 19 (79)

Single – 2 (13) 2 (8)

Divorced/separated – 1 (7) 1 (4)

Widowed – 2 (13) 2 (8)

Current work status

Retired 9 (100) 12 (80) 21 (88)

Part-time work – 2 (13) 2 (8)

Not working for health reasons

– 1 (7) 1 (4)

Recruitment source

Survey 8 (89) 5 (33) 13 (54)

PMRGCAuk charity 1 (11) 10 (67) 11 (46)

Impacts could be direct (eg, as a result of fatigue or visual loss making activities unmanageable) or indirect (such as the fluctuating nature and unpredictability of symptoms affecting an individual’s ability to plan or commit to future activities or events). Both types of impact required patients to adapt, consequently losing or reducing the sense of normality in their everyday lives. Patients also reflected on the feelings of guilt and regret that they had when their relationships with other people were affected.

Thoughts and feelings"To be able to live a normal life, I suppose, is the thing that is desirable"Frustration arose as a result of patients being unable to continue with activities and tasks in the same way as they had before the onset of GCA (table 5). Patients talked about how these unwanted adaptations to their everyday lives affected the extent to which they felt independent, and the need to rely on others or ask for help was partic-ularly unwelcome. Such reductions in independence or being unable to continue with everyday life as normal resulted in some patients feeling that they were not coping or managing the situation as well as they believed they should be able to. Their accounts demonstrated tendencies towards self-criticism rather than self-com-passion, particularly when a less active, less mentally positive or less independent role was not congruent with their established perceptions of themselves and their identity.

Other psychological impacts were also prominent in patients’ accounts of living with GCA. These included symptoms of low mood or depression mentioned earlier (see table 2), but reduced confidence, fear and uncer-tainty were also common themes in patients’ accounts (table 5). Visible bodily changes resulting from glucocor-ticoid treatment and visual loss were two specific causes of feelings of reduced confidence and/or low mood, again impacting on perceptions of self and identity. While the actual experience of symptoms like perma-nent visual loss was frightening, being afraid of what might happen (ie, losing vision, experiencing a relapse of symptoms and of the potential future side effects of treatment) was a strong theme in the data. This was not exclusive to patients who had experienced ongoing or permanent symptoms.

For those who did express fears about the future, these fears were compounded by the uncertainty that patients felt about the likelihood of events such as visual loss occur-ring, along with their other unanswered questions about whether their symptoms would improve and which of their symptoms were due to GCA and/or its treatment or other conditions. Reassurance from clinicians sometimes helped to reduce anxiety (table 5). However, the lack of a clear-cut or predictable relationship between the length of time since the onset of symptoms and the impact of GCA and its treatment on patients’ lives (table 3) was a strong feature in the data.

dIscussIOnGCA and its treatment present ongoing physical and psychological problems for patients, affecting their everyday lives in a wide variety of ways. As in a recent study of patients with polymyalgia rheumatica, another inflammatory condition of older people that is primarily treated with glucocorticoids, patients in our study described their experience in terms of collective impacts, rather than focusing on localised symptoms.11 Practical, social and psychological support may be valu-able therapeutic interventions to help patients recover or maintain a sense of normality in everyday life tasks, skills and activities. Patients will likely view recovery as linked with undertaking activities of value and ‘re-assess



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Tab

le 2

O

ngoi

ng s

ymp

tom

s re

por

ted

by

pat

ient

s tr

eate

d fo

r gi

ant

cell

arte

ritis

Fati

gue

I kno

w m

y en

erg

y le

vels

hav

e ne

ver

bee

n th

e sa

me

sinc

e I h

ad it

. I’v

e ne

ver

bee

n ab

le t

o d

o w

hat

I did

bef

ore.

(Sue

, 67,

3 y

ears

9 m

onth

s si

nce

dia

gnos

is)

I was

hav

ing

to li

e d

own

at m

eetin

gs I

felt

so e

xhau

sted

so

inte

nse

fatig

ue, n

ot ju

st fe

elin

g a

bit

slee

py

but

inte

nse

fatig

ue. (

June

, 75,

2 y

ears

sin

ce

dia

gnos

is)

Y ou

feel

—yo

u’re

was

hed

out

, you

kno

w?

Like

you

’re

tired

, ver

y tir

ed a

nd w

ashe

d o

ut. T

hat’s

wha

t it

feel

s lik

e. (E

dw

ard

, 70,

3 y

ears

sin

ce d

iagn

osis

)

I'm t

otal

ly e

xhau

sted

all

day

and

virt

ually

eve

ry d

ay. (

Kei

th, 7

1, 3

yea

rs 6

mon

ths

sinc

e d

iagn

osis

)

Pai

nTh

e on

ly t

hing

I’ve

eve

r ha

d, r

eally

, tha

t is

per

sist

ent,

is t

his

head

pai

n. A

nd it

’s—

it’s

qui

te s

tran

ge. I

t’s a

lmos

t lik

e a

wei

ght

on m

y he

ad. I

t is

n’t

a he

adac

he, b

ut n

obod

y se

ems

to u

nder

stan

d t

hat.

It’s

—it’

s, e

rr, a

pre

ssur

e p

ain.

[…] o

ccas

iona

lly I

get

a he

adac

he b

ut v

ery

rare

ly. A

nd I

can

tell

the

diff

eren

ce. Y

ou k

now

, it’s

just

a t

otal

ly d

iffer

ent

thin

g. (I

ris, 7

4, 4

yea

rs 7

mon

ths

sinc

e d

iagn

osis

)

The

only

con

cer n

tha

t I’v

e go

t is

tha

t at

nig

ht, I

get

som

e sy

mp

tom

s […

] ten

der

ness

rou

nd t

he e

ar a

nd ju

st o

n th

e si

de

of t

he e

ar […

] it

only

eve

r co

mes

at

nig

ht w

hen

I’m ly

ing

dow

n an

d n

ot, n

ot, n

ot e

very

nig

ht. (

Nev

ille,

74,

12–

18 m

onth

s si

nce

dia

gnos

is)

I’ve

had

mus

cle

pai

n ev

er s

ince

. […

] Tha

t’ s 1

5 m

onth

s af

ter

finis

hing

tak

ing

them

(ste

roid

s) I’

ve s

till g

ot m

uscl

e p

ain.

(Chr

isto

phe

r, 71

, 2 y

ears

8 m

onth

s si

nce

dia

gnos

is)

The

thin

g th

at I

got

that

nob

ody

else

see

ms

to h

ave

bee

n to

o b

othe

red

by,

was

thi

s se

nsiti

vity

of t

he h

ead

and

tha

t w

as a

bso

lute

ly a

wfu

l, b

ecau

se I

coul

dn’

t si

t an

ywhe

re, u

nder

any

form

of a

ir co

nditi

onin

g, o

r in

any

form

of d

raug

ht o

n th

e sh

ould

ers

or n

eck

or h

ead

. (B

arb

ara,

71,

2 y

ears

10

mon

ths

sinc

e d

iagn

osis

)

Sig

ht lo

ssI’v

e lo

st h

alf—

wel

l, th

r ee

qua

rter

s si

ght

in m

y on

e ey

e, w

hich

was

ver

y, v

ery

trau

mat

ic. V

ery

trau

mat

ic in

dee

d. [

…] l

osin

g yo

ur s

ight

is li

ke a

ber

eave

men

t,

and

I kn

ow t

hat

soun

ds

illog

ical

to

som

ebod

y w

ho’s

not

exp

erie

nced

it, b

ut t

o m

e it

was

like

I’d

exp

erie

nced

ano

ther

dea

th. I

was

so,

so

dev

asta

ted

[…] I

ju

st fe

el v

ulne

rab

le. (

Glo

ria, 7

2, 6

yea

rs s

ince

dia

gnos

is)

Ove

rnig

ht, a

s I s

aid

, my

sigh

t w

ent

in m

y le

ft e

ye […

] I fe

el I’

m fo

rtun

ate;

som

e p

eop

le w

ould

n’t

thin

k so

, but

I ha

ve o

nly

got

par

t si

ght

in m

y le

ft e

ye. I

ha

ve n

othi

ng a

t al

l in

my

right

.(Cla

re, 7

5, 2

yea

rs s

ince

dia

gnos

is)

Vis

ual

sym

pto

ms

Cer

tain

ly w

ithin

the

last

few

mon

ths,

sin

ce I’

ve b

een

dia

gno

sed

, my

visi

on’

s ch

ang

ed q

uite

a lo

t […

] I’v

e no

ticed

tha

t I h

ave

thes

e b

lind

sp

ots

, you

kn

ow, w

here

I ha

ve n

o vi

sion

at

all [

…] F

or in

stan

ce, i

f I’m

look

ing

at t

he t

elev

isio

n –

look

ing

at s

omeb

ody’

s fa

ce o

n te

levi

sion

, I d

on’t

see

the

top

of t

heir

head

, and

tha

t d

idn’

t ha

pp

en b

efor

e. (M

ary,

72,

2 m

onth

s si

nce

dia

gnos

is)

The

sid

e ef

fect

s of

thi

s st

eroi

d a

re a

bso

lute

ly h

ideo

us […

] ab

out

4 w

eeks

ago

, my

eye—

right

eye

sta

rted

to

fad

e an

d fa

de

and

fad

e an

d fa

de

and

tod

ay,

as w

e sp

eak,

in m

y rig

ht e

ye, I

can

onl

y d

istin

guis

h lig

ht a

nd d

ark.

I ca

n’t

dis

tingu

ish

any

shap

es o

r p

eop

le o

r an

ythi

ng b

ut I’

ve b

een

to t

he o

ptic

ian

and

it’

s no

t b

lind

ness

, as

such

. She

say

s it’

s a,

the

cat

arac

t ha

s su

dd

enly

just

gro

wn

right

acr

oss

my

eye

and

it’s

gon

e lik

e th

at in

a m

atte

r of

wee

ks. (

She

ila,

73, 1

1 m

onth

s si

nce

dia

gnos

is)

I’d b

een

suffe

ring

a lit

tle fr

om b

lurr

ed v

isio

n b

ut t

hen

I’d p

ut t

hat

dow

n to

age

rel

ated

and

I st

ill d

o ha

ve b

lurr

y vi

sion

but

aga

in, i

t’s d

ifficu

lt to

say

, ‘co

s yo

u ge

t th

is s

ort

of t

hing

as

you

get

old

er, t

hat

it w

as a

nyth

ing

to d

o w

ith t

his

cond

ition

or

not.

(Den

nis,

69,

2 y

ears

6 m

onth

s si

nce

dia

gnos

is)

Aw

aren

ess

of

bo

ne t

hinn

ing

They

’ve

also

dia

gno

sed

me

now

wit

h o

steo

-, is

it o

steo

po

rosi

s? T

he t

hinn

ing

of t

he b

ones

. (La

uren

ce, 7

2, 1

yea

r 7

mon

ths

sinc

e d

iagn

osis

)

So

I wen

t fo

r a

bon

e d

ensi

ty s

can

and

, and

dis

cove

red

tha

t, y

ou k

now

, I w

as o

steo

pen

ia, b

ut e

very

thin

g el

se w

as a

lrigh

t. (B

arb

ara,

71,

2 y

ears

10

mon

ths

sinc

e d

iagn

osis

)

Con

tinue

d



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Cha

nges

in

mo

od

I’m a

litt

le b

it fe

d u

p. I

get

ver

y fe

d u

p b

ecau

se…

just

fed

up

with

my

bod

y re

ally

(mm

m) a

nd it

has

deb

ilita

ted

my

who

le li

fe n

ow. (

She

ila, 7

3, 1

1 m

onth

s si

nce

dia

gnos

is)

I tho

ught

my

life

was

ove

r ac

tual

ly, I

tho

ught

I ca

n't

go o

n liv

ing

like

this

, I t

hink

I'd

rat

her

just

die

, it

was

no

life

at a

ll. (J

une,

75,

2 y

ears

sin

ce d

iagn

osis

)

I thi

nk I

mig

ht h

ave

bee

n m

argi

nally

buo

yed

alo

ng b

y th

e st

eroi

d p

ills

as w

ell.

[…] I

thi

nk a

lso

that

it m

ade

me

qui

te –

I w

ould

n’t

say

hap

py

but

, set

tled

in

a fu

nny

sort

of w

ay, y

ou k

now

? (B

arb

ara,

71,

2 y

ears

10

mon

ths

sinc

e d

iagn

osis

)

Psy

chol

ogic

ally

, I s

upp

ose,

you

just

feel

dow

n a

bit

and

you

’re

real

ly fe

d u

p […

] I’m

afr

aid

, und

er t

he s

tero

ids

it w

as r

eally

nas

ty. I

’m n

orm

ally

a h

app

y,

pro

bab

ly a

s yo

u ga

ther

, cha

tty

bun

ny. I

bec

ame

qui

te a

n in

tole

rant

bas

tard

and

wou

ldn'

t p

ut u

p w

ith a

nyth

ing

[…] I

hon

estly

bel

ieve

tha

t w

hen

they

up

ped

the

dos

e I s

houl

d h

ave

bee

n lo

cked

up

[…] k

ept

out

of p

eop

le’s

way

. (P

eter

, 70,

6 y

ears

8 m

onth

s si

nce

dia

gnos

is)

Cha

nges

in

app

eara

nce

I thi

nk a

t fir

st y

ou a

re a

bit

shak

en b

ecau

se, e

rr, y

our

face

doe

s ge

t a

bit

blo

ated

and

I’ve

got

som

e p

hoto

grap

hs I

won

’t le

t an

yone

see

, err,

bec

ause

my

face

doe

s—I d

on'

t lo

ok

like

mys

elf.

My

face

loo

ks t

oo

blo

ated

. (R

ose,

73,

1 y

ear

sinc

e d

iagn

osis

)

I'm h

uge

now

[…] I

've

now

put

on

two

and

a h

alf s

tone

[…] T

he s

wea

ting

was

con

stan

t. T

hat

was

aw

ful.

It w

as w

orse

—fa

r w

orse

tha

n th

e m

enop

ause

ev

er w

as. B

ecau

se I

used

to

use

a b

ath

shee

t to

sav

e w

ashi

ng t

he s

heet

s -

lie o

n a

bat

h sh

eet

and

wea

r a

T-sh

irt, c

otto

n T-

shirt

, to

soak

the

sw

eat

up.

[…] a

nd I

did

n't

real

ly w

ant

to g

o an

ywhe

re b

ecau

se m

y he

ad w

as w

et, y

ou k

now

, my

hair

was

wet

, sw

eatin

g fr

om m

y he

ad. (

Lind

a, 6

8, 8

mon

ths

sinc

e d

iagn

osis

)

The

skin

see

ms

to b

e th

at t

hin

it se

ems

to b

e th

at it

's a

lmos

t lik

e tis

sue

so t

hat

if I d

o ge

t ju

st a

sm

all b

ang

on it

I've

got

a h

uge

bru

ise

ther

e so

all

my

arm

s ar

e co

vere

d in

bru

ises

. (R

ober

t, 9

2, 2

yea

rs s

ince

dia

gnos

is)

Just

see

ing

my,

my

face

- n

ot s

o m

uch

my

bod

y at

tha

t p

oint

but

my

face

mor

phi

ng in

to a

frog

or

a ch

ipm

unk.

And

the

n th

e ha

ir d

own

the

sid

es o

f my

face

[…] I

had

fat

roun

d, r

ound

the

bot

tom

of m

y ne

ck […

] It

was

just

life

, life

cha

ngin

g. A

nd m

y ha

ir th

en w

ent

into

—I'v

e go

t cu

rly h

air

but

it w

ent

into

w

iry, v

ery

tight

cur

ls. I

t w

as t

he m

ost

pec

ulia

r th

ing

but

tha

t w

as t

he s

tero

ids

agai

n… (C

ress

ida,

62,

5 y

ears

5 m

onth

s si

nce

dia

gnos

is)

With

the

ste

roid

s […

] I b

lew

up

like

a b

allo

on. [

…] I

t w

as t

he fa

ce, r

eally

. I m

ean

I - m

y co

llar

size

wen

t up

ab

out

thre

e si

zes

in a

ver

y sh

ort

time.

[…] I

t w

as a

dam

n nu

isan

ce. I

had

to

buy

a lo

ad o

f new

shi

rts.

[…] I

mea

n I'd

got

a fo

otb

all o

n m

y sh

ould

ers

real

ly. [

…] I

felt

emb

arra

ssed

, rea

lly […

] As

I say

, I

coul

dn'

t fa

sten

my

shirt

col

lars

. (K

eith

, 71,

3 y

ears

6 m

onth

s si

nce

dia

gnos

is)

Cha

nges

in

slee

pP

rob

ably

asl

eep

by

10is

h an

d t

hen

abou

t ha

lf el

even

, or

mid

nigh

t, I

get—

my

feet

are

bo

iling

ho

t an

d t

hro

bb

ing

like

bill

y-o

and

a h

ideo

us r

ash.

[…] I

n th

e d

aytim

e, w

hen

I’m w

alki

ng a

roun

d, m

y fe

et, a

lthou

gh t

hey

look

pre

tty

hid

eous

with

a b

it of

a r

ash

on a

nd t

hat,

the

y d

on’t

seem

to

swel

l up

and

thr

ob

so m

uch.

[…] S

o t

hat

go

es o

n ne

arly

all

nig

ht, e

very

nig

ht. C

ons

eque

ntly

, I’m

tir

ed in

the

day

. (S

heila

, 73,

11

mon

ths

sinc

e d

iagn

osis

)

Whe

n I w

as o

n th

e 60

mg,

I’d

, I’d

get

an

hour

and

hal

f, if

I was

luck

y, a

nd t

hen

I’d b

e aw

ake

for

an h

our

and

a h

alf a

nd t

hen,

you

kno

w, m

ayb

e an

othe

r ho

ur; s

omet

hing

like

tha

t, s

o re

ally

bad

sle

epin

g p

atte

rns

right

the

way

thr

ough

. (B

arb

ara,

71,

2 y

ears

10

mon

ths

sinc

e d

iagn

osis

)

I cou

ldn’

t sl

eep

at

high

dos

es. I

t w

as a

bit,

yea

h, w

earin

g. B

ut t

hen,

whe

n I g

ot b

elow

—w

hen

I got

to

20 a

nd b

elow

, tha

t go

t a

lot

bet

ter.

(Yvo

nne,

65,

4

year

s 7

mon

ths

sinc

e d

iagn

osis

)

Tab

le 2

C

ontin

ued

Con

tinue

d



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No

t fe

elin

g

norm

alI d

o ha

ve, I

wou

ldn’

t w

hat

I cal

l hea

dac

hes,

the

y ar

e m

ore

of a

fuzz

ines

s, I

get

diz

zine

ss. B

ut is

it r

elat

ed t

o th

at, I

don

’t kn

ow. (

Den

nis,

69,

2 y

ears

6

mon

ths

sinc

e d

iagn

osis

)

I see

m t

o ha

ve lo

st s

ome

stre

ngth

in m

y ar

ms,

the

str

engt

h th

at I

did

hav

e […

] I d

on't

see

m t

o ha

ve fu

ll co

ntro

l of m

y le

gs. (

Rob

ert,

92,

2 y

ears

sin

ce

dia

gnos

is)

My

feet

—I d

on’t

know

wha

t it

is; t

hey’

re v

ery

stra

nge

[…] t

hey

just

feel

tig

ht; t

hat’s

the

onl

y—b

est

way

I ca

n d

escr

ibe

it re

ally

. […

] my

feel

… h

eavy

is t

he

wor

d. (

Cla

re, 7

5, 2

yea

rs s

ince

dia

gnos

is)

I jus

t d

o fe

el w

eak

som

ehow

. It’s

har

d t

o d

escr

ibe.

(Mar

y, 7

2, 2

mon

ths

sinc

e d

iagn

osis

)

I rea

lly c

an’t

und

erst

and

why

my

blo

ods

are

norm

al a

nd y

et […

] I s

till f

eel n

ot n

orm

al. (

Iris

, 74,

4 y

ears

7 m

onth

s si

nce

dia

gnos

is)

Tab

le 2

C

ontin

ued

continually and monitor their current well-being’, comparing this with their perceptions of normality before diagnosis.12 13

Besides the expected impact of permanent visual loss on patients’ lives,14 it is important to note the extent to which other symptoms including fatigue, pain and ‘not feeling normal’ continued to affect multiple aspects of the lives of patients with GCA many years after their diagnosis. In addition, psychological consequences such as reduced confidence, anxiety and feelings of reduced independence could extend beyond the duration of the physical symptoms. Thus, the status of a patient in terms of coping, recovery and/or sense of normality in everyday life is somewhat unpredictable and does not necessarily correspond with the length of time since diagnosis/completion of treatment or clinical severity.

Ongoing adaptations were made by patients both as a direct consequence of their symptoms and as a strategy for self-management. Hall et al describe these strategies as part of ‘the fight to maintain normality’.12 An increased sense of independence may arise from being able to plan changes in advance. Furthermore, ‘maintaining the appearance of normality’12 can be challenging when glucocorticoid treatments cause visible bodily changes, impacting on self-image, mood and confidence, with resulting effects on activities and behaviours.

Finding the optimal balance of information provision is challenging, and by educating patients about the risks of visual loss with GCA, an additional psychological burden is introduced. GCA presents considerable risks in terms of visual loss if left untreated,15 16 consequently clinicians may emphasise these risks to maximise patient adherence to glucocorticoid treatment. Yet fears about the possibility of visual loss can be very distressing for patients, continuing long after diagnosis. In our study, patients who had lost vision were also concerned about relapse causing further visual loss in the future. In addition, changes in vision from other conditions such as cataract and glaucoma, usually attributed to glucocorticoid therapy, heightened patients’ existing anxieties about experiencing perma-nent visual loss as a result of GCA.

This study provides the first qualitative analysis of the impact of GCA and its treatment on patients’ everyday lives. Interviews were conducted with a sample of people from different social backgrounds and age groups. The findings are compatible with existing models of health experiences and research from other chronic conditions. The data presented are based on patients’ retrospective accounts of their experiences, which may change with time.

It was not the intention of this study to specifically explore ethnic or cultural factors that may impact on experiences of GCA, but future research might actively aim to recruit people from a range of ethnic groups. In addition, the impact of GCA for people of different ages and/or before and after transition points in the life-course such as retirement, and of patients who undergo treatment with evolving biologic regimens, could be



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Table 3 Impact duration of symptoms experienced by patients with treated giant cell arteritis

Minimal or no long-term impact

They put me straight on to steroids. […] everything disappeared after that. And I’ve had no symptoms since. (Joan, 81, 1 year 4 months since diagnosis)

As far as living with it goes, um to be quite honest I haven’t found any real change um it's not affecting me as far as my day to day living what I do and things all the way through. I think I've been very, very lucky. (David, 71, 2 years 5 months since diagnosis)

Continuing symptoms

I’m past my year’s date of my first pain in my head and I’m not better. I’m worse than I was at the start…and really, just the tiredness, legs pain that I’ve told you […] I count these cataracts as the bane of my life. (Sheila, 73, 11 months since diagnosis)

I'm pleased, you know, that I've, that I've got through it all. But that was 2010. We're now 2015. So it's only in the last, say, year that I've really got my body strong again […] it took a good few years after to really get back my strength. (Cressida, 62, 5 years 5 months since diagnosis)

[I] can’t do the things that I want to now […] because of the discomfort in my joints, in my arms and even in the chest. It’s really, really uncomfortable […] I believe it’s the reactions from the Prednisolone because I, I don’t, I don’t think it’s from the Giant Cell Arteritis […] that seems – after about 2 month, the, the headaches went away, although I’ve still got the inflammation in my bloodstream like, according to (the rheumatologist), you know but… yeah it’s, it’s the after effects of, of those—of Pred-, Prednisolone steroids that I think is causing—this is what’s caused my glaucoma problems as well. (Dennis, 69, 2 years 6 months since diagnosis)

Changes in health You’ve lived your life with full vision […] It’s really hard. […] because three quarters of the sight has gone in my right eye. (Gloria, 72, 6 years since diagnosis)

I’ve got tablets now… I’m going to have to have long term – you see, I, I, I don’t know—I’m thinking I’m going to have to have long term things to, to look after this osteoporosis now. (Laurence, 72, 1 year 7 months since diagnosis)

explored in the future. The relationship between clin-ical presentation and/or comorbidities at diagnosis and the subsequent impact on life could also usefully be explored in more detail through a mixed-methods study, particularly given the clinical heterogeneity of GCA at diagnosis and the potential mediating factors such as treatment timing and approach, and individual patient behaviours and psychological responses. This could facilitate identification in advance of patients at higher risk of impacts such as anxiety and loss of normality, who might benefit most from potential support or educational interventions.

Two approaches to sampling were adopted in recogni-tion that those GCA patients who were associated with the charity PMRGCAuk were unlikely to be representative of all patients with GCA. The sample included patients who described minimal impacts, although we acknowledge that those patients who felt that GCA had a large impact on their lives may have been more likely to volunteer to take part in the study. In our view, this does not diminish the importance of our findings about the experiences of patients who do experience ongoing impacts, despite the fact that the prev-alence of these experiences has not yet been established in larger populations.

Purposive sampling is not intended to be numerically representative, but instead allows in-depth exploration and insight into experiences of patients. Consequently, the use of relative frequencies is avoided in the text to avoid confusion. Finally, our methodology did not allow us to verify the clinical diagnosis of GCA from participants’ medical records or the results of medical tests they had

undergone; however, the fact that all participants were able to describe their glucocorticoid treatment provided reassurance that our sampling strategy identified individ-uals from the population of interest.

cOnclusIOnsThis study demonstrates that GCA presents patients with considerable ongoing physical and psychological symp-toms that affect their everyday lives in a wide variety of ways. These experiences vary over time according to the combination of multiple factors including symptoms, side effects, new health conditions and adaptations and impacts on normality in everyday life. Visible body changes attributed to glucocorticoid therapy and fear of future visual loss were important contributors to the loss of normality reported by patients.

This new understanding of the impact of GCA on patients’ lives has important implications for measurement/capture of truly patient-relevant outcomes, both in clinical trials and clinical practice. It also suggests that many patients with GCA would benefit from additional psychological support, whether from peers or professionals.

Clinical management of GCA often focuses on medical concepts such as disease activity, relapse, remission and the prescribing of further medications to mitigate against the consequences of glucocorticoid toxicity.2 We suggest that an understanding and acknowledgement of the very different ways patients experience GCA and its treatment will help clinicians negotiate patient-centred treatment plans, including planning adaptations to their lives to



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Tab

le 4

Im

pac

ts o

f sym

pto

ms

of g

iant

cel

l art

eriti

s an

d it

s tr

eatm

ent

on a

ctiv

ities

, beh

avio

urs

and

circ

umst

ance

s

Wo

rk a

nd

volu

ntee

ring

I've

give

n up

a lo

t of

my

com

mitm

ents

. I'v

e ha

d t

o g

ive

up a

lot

of

my

volu

ntar

y co

mm

itm

ents

, tru

stee

ship

s of

thi

s an

d t

hat,

and

doi

ng

refe

reei

ng. (

June

, 75,

2 y

ears

sin

ce d

iagn

osis

)

I did

use

d t

o p

lay

the

orga

n at

chu

rch

and

var

ious

thi

ngs

but

I ca

n on

ly p

lay

now

to

amus

e m

ysel

f bec

ause

I ca

n’t

read

the

mus

ic. (

Cla

re, 7

5,

2 ye

ars

sinc

e d

iagn

osis

)

It w

as h

ard

to

keep

wor

king

whe

n I w

asn’

t sl

eep

ing

very

wel

l. Th

at w

as p

rob

ably

the

mai

n th

ing

[…] I

had

had

alm

ost

3 m

onth

s of

f fro

m w

ork

[…]

and

I’d

just

– I

did

n’t

wan

t to

be

retir

ed o

n th

e gr

ound

s of

ill h

ealth

. I lo

ve m

y jo

b. I

wan

ted

to

get

bac

k to

it. (

Yvo

nne,

65,

4 y

ears

7 m

onth

s si

nce

dia

gnos

is)

Hav

ing

take

n th

e st

eroi

ds,

you

kno

w, a

fter

my

bre

akfa

st, m

y he

ad w

as b

uzzi

ng, I

cou

ldn'

t co

ncen

trat

e an

d I

was

- it

was

like

I w

as h

avin

g an

out

-of

-bod

y ex

per

ienc

e. A

nd, a

nd I

said

to

my

bos

s, 'I

nee

d t

o go

hom

e,' [

…] I

sen

t in

doc

tor'

s no

tes

for

abou

t tw

o or

3 m

onth

s […

] I d

on't

thi

nk I

coul

d

have

gon

e b

ack.

[…] t

her e

is n

o w

ay o

n G

od's

ear

th t

hat

I cou

ld h

ave

wor

ked

. I c

ould

n't,

I co

uld

n't

have

don

e it

phy

sica

lly […

] I w

as s

end

ing

in s

ick

note

s an

d […

] in

the

end

[…] t

hey

just

let

me

go. (

Cre

ssid

a, 6

2, 5

yea

rs 5

mon

ths

sinc

e d

iagn

osis

)R

elat

ions

hip

sH

ow m

y hu

sban

d’s

stu

ck w

ith m

e th

is la

st y

ear,

I don

’t kn

ow s

omet

imes

bec

ause

I ha

ve –

I’ve

bee

n, I’

ve b

een

spit

eful

to

him

fo

r no

rea

son

bec

ause

I’m

– d

on’

t fe

el q

uite

so

go

od

and

I’m

rat

ty […

] it’s

ho

rrib

le a

nd it

’s p

athe

tic

and

I he

ar m

ysel

f doi

ng it

and

I kn

ow I’

m d

oing

it a

nd I

feel

like

rea

lly m

ean

for

doi

ng it

to

him

[…] a

nd t

he g

rand

dau

ghte

r’s b

een

[…] s

tayi

ng h

ere

and

[…] I

love

her

so

muc

h –

she’

s irr

itate

d m

e as

wel

l. […

] and

I sa

id, ‘

Cle

ar o

ff. G

o aw

ay’ [

…] a

nd it

’s b

ecau

se I’

m ir

ritab

le a

nd I’

m m

iser

able

. (S

heila

, 73,

11

mon

ths

sinc

e d

iagn

osis

)

I bec

ame

qui

te a

n in

tole

rant

bas

tar d

and

wou

ldn'

t p

ut u

p w

ith a

nyth

ing

and

my

poo

r ol

d w

ife o

f 40

year

s ha

d t

o p

ut u

p w

ith it

. And

I—I h

ones

tly

bel

ieve

tha

t w

hen

they

up

ped

the

dos

e I s

houl

d h

ave

bee

n lo

cked

up

. I t

hink

I sh

ould

hav

e b

een

kep

t ou

t of

peo

ple

’s w

ay. (

Pet

er, 7

0, 6

yea

rs

8 m

onth

s si

nce

dia

gnos

is)

Non

e of

(my

fam

ily) r

eally

kne

w w

hat

I was

goi

ng t

hrou

gh […

] I k

now

tha

t m

y ni

ece

was

a b

it sc

eptic

al w

hen

I did

n't

got

to h

er d

augh

ter'

s w

edd

ing

[…] A

nd it

was

n't

until

she

saw

me

gett

ing

slig

htly

bet

ter

abou

t a

mon

th, 6

wee

ks a

go t

hat

she

then

rea

lised

how

poo

rly I'

d b

een.

(Lin

da,

68,

8

mon

ths

sinc

e d

iagn

osis

)

I get

a li

ttle

bit

shor

t te

mp

ered

tha

n I u

sed

to

be

[…] I

rea

ct m

ore

than

I us

ed t

o, y

ou k

now

I sh

oot

off a

bit

qui

cker

. (A

nne,

85,

2 y

ears

6 m

onth

s si

nce

dia

gnos

is)

Con

tinue

d



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ugust 2017. Dow

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Open Access

Ho

bb

ies,

so

cial

and

le

isur

e ac

tivi

ties

I can

't d

o m

y ho

bb

ies

like

I use

d t

o. I

use

d t

o em

bro

ider

, I u

sed

to

sew

. I u

sed

to

knit

and

cro

chet

. I c

an't

do

that

[…] I

just

can

't d

o m

y ho

bb

ies.

A

nd I

used

to

enjo

y co

okin

g […

] I c

an't

go

on

holid

ay li

ke I—

whe

n I w

ant

to a

nd I

can'

t p

lan

anyt

hing

. I d

on't

kno

w h

ow I'

m g

oing

to

be

the

next

d

ay. I

get

up

, I fe

el a

ll rig

ht. W

e st

art

to g

o ou

t an

d I'

m o

ut a

nd I'

m g

ettin

g b

ad a

nd y

ou k

now

, the

hea

dac

hes

star

t an

d m

y si

ght

star

ts t

o ge

t ve

ry

det

erio

rate

d, b

lurr

ed, a

nd m

y jo

ints

ach

e. (D

orot

hy, 7

8, 2

yea

rs 1

1 m

onth

s si

nce

dia

gnos

is)

One

can

’ t m

ake

pla

ns. O

ne c

an’t

say,

‘Wel

l, I’m

goi

ng t

o go

to

(city

) tom

orro

w a

nd m

eet

so-a

nd-s

o an

d s

o-an

d-s

o,’ [

…] Y

ou h

ave

to m

ake

a d

ecis

ion

on t

he d

ay, w

hich

is n

ot a

lway

s p

ossi

ble

[…] b

ecau

se y

ou d

on't

kno

w h

ow y

ou’r

e go

ing

to fe

el. (

Ros

e, 7

3, 1

yea

r si

nce

dia

gnos

is)

The

ster

oid

s ha

ve m

ade

me

shak

e. […

] My

who

le b

ody

trem

ble

s an

d I,

I’m

—al

l my

life,

I’ve

bee

n a

pat

chw

ork

and

qui

lter

and

sew

er, c

loth

es d

ress

m

akin

g an

d I,

I ca

n’t

thre

ad a

nee

dle

now

[…] I

’ve

had

to

give

up

my

clas

ses.

[…] I

can

’t re

ad a

boo

k. I’

ve lo

st t

he c

once

ntra

tion

[…] I

’m n

ot a

p

erso

n w

ho li

kes

to b

e on

my

own

an a

wfu

l lot

. Tha

t’s w

hy I

join

clu

bs

for

sew

ing

and

gro

upin

g an

d p

hoto

grap

hing

bec

ause

I lik

e to

tal

k to

oth

er

peo

ple

and

hav

e a

bit

of fu

n an

d a

few

sm

iles

and

eve

ryth

ing.

(She

ila, 7

3, 1

1 m

onth

s si

nce

dia

gnos

is)

Wha

t I h

ave

foun

d, o

f cou

rse,

is t

hat

I’m n

ot c

over

ed b

y tr

avel

insu

ranc

e, a

nd I

used

to

do

an a

wfu

l lot

of t

rave

lling

[…] t

hey

won

’t in

sure

– c

over

it

[…] I

mea

n I l

ike

to g

o to

Afr

ica

and

pla

ces

like

that

off

the

bea

ten

trac

k, b

ut I’

m a

bit

hesi

tant

ab

out

that

now

. I s

upp

ose

that

is a

big

imp

act

on m

y lif

e. (M

ary,

72,

2 m

onth

s si

nce

dia

gnos

is)

If, fo

r ex

amp

le, I

go

to a

res

taur

ant,

I ne

ed t

o si

t b

y a

win

dow

so

that

I ha

ve t

he li

ght.

So

it d

oes

have

an

imp

act

on m

y lif

e, c

erta

inly

. I a

lso

find

go

ing

from

sun

light

into

a d

ark

room

ver

y, v

ery

diffi

cult

now

bec

ause

I ca

n’t

imm

edia

tely

ad

apt

to t

he li

ght

chan

ges.

(Glo

ria, 7

2, 6

yea

rs s

ince

d

iagn

osis

)

Ho

useh

old

tas

ks,

dai

ly r

out

ines

and

p

erso

nal c

are

I str

uggl

e to

coo

k. I

stru

ggle

to

do

hous

ewor

k. I

stru

gg

le w

ith

ever

yday

livi

ng. (

Dor

othy

, 78,

2 y

ears

11

mon

ths

sinc

e d

iagn

osis

)

Whe

n I g

o sh

opp

ing

[…] I

can

sor

t ou

t th

e, t

he n

otes

but

it, i

t’s t

he c

hang

e th

at I

have

diffi

culty

with

[…] M

y je

wel

lery

, nec

klac

es […

] I u

se t

he o

nes

that

I ca

n p

ut o

ver

my

head

tha

t I d

on’t

have

to

try

and

fast

en, b

ut t

hat’s

diffi

cult.

And

I ca

n m

anag

e to

mak

e a

cup

of t

ea a

nd t

hat

sort

of t

hing

but

, yo

u kn

ow, i

t’s o

bvi

ousl

y no

t as

eas

y as

it w

as, b

ut e

very

thin

g ta

kes

a lo

t lo

nger

. […

] Ob

viou

sly,

whe

n yo

u’ve

onl

y go

t p

art

sigh

t in

the

one

eye

, you

r fo

cusi

ng is

n’t

right

at

all [

…] I

go

out

in t

he g

ard

en n

ow a

nd I

go t

o p

ick

up s

ome

wee

ds

and

, and

it t

akes

me

qui

te a

whi

le t

o ge

t m

y ha

nd o

n, o

nto

the

wee

d; I

thi

nk I’

m t

here

to

pic

k it

up a

nd I’

m n

ot […

] pic

king

it u

p a

t al

l. (C

lare

, 75,

2 y

ears

sin

ce d

iagn

osis

)

Som

e d

ays

I, I w

ould

try

and

do

sup

per

, mak

e su

pp

er b

ut m

ore

ofte

n th

an n

ot I

coul

dn'

t d

o it.

(Cre

ssid

a, 6

2, 5

yea

rs 5

mon

ths

sinc

e d

iagn

osis

)

I fee

l ver

y w

eak

actu

ally

; and

not

a t

rem

or b

ut s

haky

. My

hand

writ

ing

was

nev

er b

rillia

nt b

ut it

is d

read

ful n

ow. I

hav

e to

typ

e ev

eryt

hing

bec

ause

it’s

so

aw

ful.

(Mar

y, 7

2, 2

mon

ths

sinc

e d

iagn

osis

)

Whe

n I g

et u

p in

the

mor

ning

, I c

an’t

dre

ss m

ysel

f pro

per

ly […

] cha

ngin

g yo

ur u

nder

wea

r; I

have

to

hang

on,

ont

o th

e b

ed, s

ide

of t

he b

ed w

ith o

ne

hand

whi

le I

nego

tiate

the

und

erp

ants

and

the

und

erw

ear

with

the

oth

er h

and

. (La

uren

ce, 7

2, 1

yea

r 7

mon

ths

sinc

e d

iagn

osis

)

I was

on

alen

dro

nic

acid

for,

to p

rote

ct t

he b

ones

but

I st

opp

ed t

hat

bec

ause

I fo

und

it s

o d

ifficu

lt […

] eve

n th

ough

it w

as o

nly

once

a w

eek

[…] y

ou

have

to

take

it b

efor

e an

ythi

ng e

lse

and

not

hav

e an

ythi

ng t

o d

rink

for

at le

ast

half

an h

our

and

I fo

und

tha

t re

ally

diffi

cult

bec

ause

whe

n I w

ake

up

I'm e

ver

so t

hirs

ty a

nd t

o ha

ve t

o ta

ke t

his

pill

and

the

n w

ait

half

an h

our

bef

ore

I cou

ld h

ave

a cu

p o

f tea

I fo

und

rea

lly h

orrib

le. (

June

, 75,

2 y

ears

si

nce

dia

gnos

is)

I’ve

got

no o

steo

por

osis

but

I d

o ta

ke a

tab

let

each

wee

k fo

r th

at. I

hav

e to

tak

e on

e a

wee

k, o

n th

e sa

me

day

, eve

ry w

eek

and

sit

for

half

an h

our

afte

r I’v

e ta

ken

it. (C

lare

, 75,

2 y

ears

sin

ce d

iagn

osis

)

Tab

le 4

C

ontin

ued

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tinue

d



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Fina

ncia

l ci

rcum

stan

ces

I'm n

ow

pay

ing

fo

r so

meb

od

y to

cle

an t

he h

ous

e. T

hey

com

e in

fort

nigh

tly a

nd h

ave

a go

od g

o th

roug

h fo

r m

e. (D

orot

hy, 7

8, 2

yea

rs 1

1 m

onth

s si

nce

dia

gnos

is)

Wel

l for

one

thi

ng it

's t

he c

ost

real

ly o

f em

plo

ying

peo

ple

, you

kno

w, i

t's

bec

omes

qui

te e

xpen

sive

at

times

. I m

ean

we

get

a fe

mal

e in

to o

nce

a w

eek

to h

elp

with

hou

sew

ork,

hou

se c

lean

ing,

thi

ngs

like

that

. (R

ober

t, 9

2, 2

yea

rs s

ince

dia

gnos

is)

At

the

end

of t

he m

edic

al, h

e sa

id I

pas

sed

the

med

ical

, I w

ould

n't

be

entit

led

to

any

emp

loym

ent

sup

por

t al

low

ance

bec

ause

, acc

ord

ing

to t

he

med

ical

, I h

ad n

o d

escr

ipto

rs o

f sco

red

poi

nts

for

dis

abili

ty. [

…] W

hat

it re

ally

mea

nt w

as t

hat

none

of t

he d

escr

ipto

rs t

hat

they

wor

ked

on

to s

ee

how

ill y

ou w

ere,

ap

plie

d t

o m

e. […

] the

y’d

ans

wer

the

que

stio

ns o

n th

e co

mp

uter

and

the

re w

as n

othi

ng in

the

re fo

r an

ybod

y w

ith P

MR

and

GC

A.

[…] I

’d p

asse

d t

he t

est,

but

I p

oint

ed o

ut I

coul

d o

nly

wor

k fo

r 90

min

. (P

eter

, 70,

6 y

ears

8 m

onth

s si

nce

dia

gnos

is)

I wen

t an

d g

ot m

ysel

f a b

igge

r sc

reen

for

my

tele

visi

on, a

big

ger

scre

en t

elev

isio

n, s

o I c

an w

atch

the

tel

evis

ion.

(Cla

re, 7

5, 2

yea

rs s

ince

dia

gnos

is)

Dri

ving

Wel

l, I’m

, I’m

mo

re c

auti

ous

act

ually

, esp

ecia

lly if

I’m

dri

ving

. Alth

ough

my—

wha

t I s

ee, I

see

qui

te w

ell n

ow I’

ve g

ot m

y ne

w g

lass

es, b

ut t

he

actu

al b

lind

are

a is

a li

ttle

…. I

t’s n

ot a

pro

ble

m, b

ut I

have

to

be

care

ful w

ith

traf

fic

light

s fo

r in

stan

ce, b

ecau

se I

can

be

goin

g al

ong

and

for

one

brie

f sec

ond

the

tra

ffic—

the

red

ligh

t is

n’t

ther

e. T

hen

if I c

hang

e ju

st s

light

ly m

y ra

nge,

or

look

just

slig

htly

to

the

left

or

up o

r d

own,

the

n th

e lig

ht is

th

ere

and

I kn

ow it

’s t

here

and

I ke

ep m

y ey

e on

—at

tha

t le

vel t

hen.

(Mar

y, 7

2, 2

mon

ths

sinc

e d

iagn

osis

)

I do

driv

e lo

cally

and

som

e lo

ng d

ista

nce

but

, you

kno

w, I

, I d

on’t

do

anyt

hing

for

a lo

ng p

erio

d o

f tim

e. T

hat’s

as

a re

sult

of t

he il

lnes

s re

ally

, I t

hink

. (B

arb

ara,

71,

2 y

ears

10

mon

ths

sinc

e d

iagn

osis

)

It to

ok m

e a

long

tim

e to

lear

n to

go

bac

k to

driv

ing

and

I st

ill w

on’t

driv

e on

the

mot

orw

ay b

ecau

se it

’s m

y rig

ht e

ye t

hat’s

affe

cted

and

I’m

fr

ight

ened

tha

t I s

han’

t se

e ca

rs if

I p

ull o

ut. S

o I’m

ver

y ca

refu

l. (G

loria

, 72,

6 y

ears

sin

ce d

iagn

osis

)

The

only

thi

ng t

hat

I rea

lly m

iss

is b

eing

ab

le t

o d

rive…

so I

have

to—

obvi

ousl

y ha

ve t

o re

ly o

n fr

iend

s an

d fa

mily

. (C

lare

, 75,

2 y

ears

sin

ce d

iagn

osis

)

Tab

le 4

C

ontin

ued



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Tab

le 5

Th

ough

ts a

nd fe

elin

gs in

eve

ryd

ay li

fe w

ith g

iant

cel

l art

eriti

s

Frus

trat

ion

It is

fru

stra

ting

; the

re’s

no

dou

bt

abou

t it.

I ca

n’t

say

it is

n’t.

(Cla

re, 7

5, 2

yea

rs s

ince

dia

gnos

is)

It’s

very

frus

trat

ing,

bec

ause

you

—yo

ur m

ind

stil

l thi

nks

you

can

do

thin

gs, b

ut a

ctua

lly […

] whe

n I t

ry, m

y b

ody

flags

out

ver

y q

uick

ly. (

Sue

, 67,

3 y

ears

9

mon

ths

sinc

e d

iagn

osis

)

I get

frus

trat

ed b

ecau

se […

] I t

hink

, 'Th

is h

as g

ot t

o b

e d

one.

' Di n

ners

got

to

star

t an

d if

I'm

not

wel

l I s

ay, '

Can

you

giv

e m

e …

?' 'I

n a

min

ute.

In a

m

inut

e.' I

'm n

ot t

hat

typ

e of

per

son.

I w

ant

to g

et u

p a

nd g

et it

don

e an

d s

orte

d. A

nd I'

m g

ettin

g ve

ry fr

ustr

ated

tha

t w

ay. (

Dor

othy

, 78,

2 y

ears

11

mon

ths

sinc

e d

iagn

osis

)

Oh

frus

trat

ed, I

sup

pos

e, r

eally

, you

kno

w. I

, I w

ant

to b

e d

oing

thi

ngs

but

you

kno

w v

ery

wel

l tha

t yo

u ca

n't.

(Kei

th, 7

1, 3

yea

rs 6

mon

ths

dia

gnos

is)

Loss

of

ind

epen

den

ceI c

an't

do

the

job

s I u

sed

to

do

ab

out

the

pla

ce, y

ou k

now

. I’m

gon

na h

ave

to g

et a

gar

den

er in

to

help

me

with

the

gar

den

bec

ause

it's

get

ting

over

grow

n an

d u

m t

hing

s lik

e th

at y

ou k

now

and

job

s ar

ound

the

hou

se w

here

I w

ould

do

it m

ysel

f I'v

e g

ot

to g

et s

om

eone

in t

o d

o t

hem

. […

] it'

s ju

st

that

mai

nly

I qui

te e

njo

yed

do

ing

it m

ysel

f an

d I

kno

w I

can'

t no

w. (

Rob

ert,

92,

2 y

ears

sin

ce d

iagn

osis

)

You

just

can

’t d

o th

ings

for

your

self

anym

ore

and

tha

t—th

is is

wha

t, t

his

is w

hat

I hat

e m

ore

than

any

thin

g. […

] So

it re

-, it

rea

lly g

ets

you

dow

n—it

get—

it d

oes

get

you

dow

n so

met

imes

[…] i

t’s ju

st t

hat

the,

the

thi

ngs

that

you

, tha

t yo

u ca

n’t

do

for

your

self

that

you

’ve

alw

ays

don

e an

d, a

nd y

eah,

you

’ve

got

to k

eep

on

aski

ng o

ther

peo

ple

to

do

thin

gs fo

r yo

u an

d t

hat,

to

be

hone

st w

ith y

ou, t

hat

is n

ot m

e. (L

aure

nce,

72,

1 y

ear

7 m

onth

s si

nce

dia

gnos

is)

You

lose

you

r in

dep

end

ence

whe

n yo

u ca

n’t

driv

e […

] I d

o m

iss

my

driv

ing

real

ly. (

Cla

re, 7

5, 2

yea

rs s

ince

dia

gnos

is)

Una

ble

to

co

pe/

man

age

I rea

lly d

o fin

d s

ome

thin

gs a

bit

of a

n ef

fort

[…] I

fee

l pat

heti

c at

tim

es a

nd it

’s ju

st n

ot

me

to fe

el p

athe

tic. [

…] I

fee

l as

if I’m

kin

d o

f b

eing

stu

pid

an

d m

akin

g a

fus

s. T

hat

I sho

uld

be

gett

ing

on w

ith t

hing

s an

d I—

and

som

etim

es I

just

can

’t; I

just

hav

en’t

got

the

ener

gy. (

Mar

y, 7

2, 2

mon

ths

sinc

e d

iagn

osis

)

It's

gett

ing

that

I sa

id t

o m

y hu

sban

d, '

I wis

h I w

as s

ix fo

ot u

nder

.' […

] I'm

get

ting

qui

te d

epre

ssed

with

it […

] It'

s ve

ry d

emor

alis

ing

whe

n yo

u're

not

the

ty

pe

of p

erso

n th

at g

ives

up

. […

] And

I fin

d it

ver

y ha

rd t

hat

I'm n

ot c

opin

g lik

e I u

sed

to.

(Dor

othy

, 78,

2 y

ears

11

mon

ths

sinc

e d

iagn

osis

)

I find

the

ste

roid

s re

ally

, sor

t of

, qui

te h

ard

to

cop

e w

ith b

ecau

se t

hey’

re—

they

’re

very

—th

ey h

ave

som

e p

ecul

iar

reac

tions

, ver

y, v

ery

tirin

g. (R

ose,

73,

1

year

sin

ce d

iagn

osis

)

Red

uced

co

nfid

ence

Wel

l bo

dy

imag

e is

som

ethi

ng t

hat

may

see

m s

uper

fici

al b

ut w

hen

you

see

your

self

cove

red

in le

sion

s al

l ove

r an

d y

our

hair

falli

ng o

ut a

nd t

hese

gh

astly

bru

ises

all

over

it's

, it

do

esn'

t m

ake

you

feel

go

od

. (Ju

ne, 7

5, 2

yea

rs s

ince

dia

gnos

is)

I had

lost

con

fiden

ce in

mys

elf a

nd I

just

did

not

hav

e th

e co

nfid

ence

. Ob

viou

sly

bec

ause

I've

put

wei

ght

on a

s w

ell a

nd I

had

n't

bee

n to

chu

rch

for

a w

hile

and

, you

kno

w, p

eop

le a

re g

oing

to

see

the

diff

eren

ce in

me

and

the

y're

all

goin

g to

say

, 'O

h, w

hat'

s w

rong

? H

ow a

re y

ou?'

and

all

this

sor

t of

th

ing

and

you

just

wan

t to

sta

y aw

ay fr

om p

eop

le 't

ill y

ou g

et b

ack

to n

orm

al a

nd y

ou d

on't

hav

e to

ans

wer

all

thos

e q

uest

ions

. […

] Get

ting

hot.

Tha

t ca

n af

fect

you

, you

r co

nfid

ence

bec

ause

you

don

't w

ant

to b

e w

ith p

eop

le b

ecau

se y

ou s

tart

to

swea

t an

d y

our

face

goe

s b

right

red

(Lin

da,

68,

8 m

onth

s si

nce

dia

gnos

is)

Out

of m

y rig

ht e

ye, I

can

’t se

e […

] It’s

tak

en a

ll m

y co

nfid

ence

aw

ay. I

’ve

got

no c

onfid

ence

at

all.

(She

ila, 7

3, 1

1 m

onth

s si

nce

dia

gnos

is)

I fel

t ve

ry u

natt

ract

ive.

[…] W

here

I w

as, y

ou k

now

, tha

t co

nfid

ent,

wor

king

wom

an w

ho w

ould

jum

p in

the

car

and

go

out

and

see

all

thes

e b

ig

corp

orat

es a

nd, y

ou k

now

, enj

oyed

life

to

feel

ing

like

a re

ally

old

, old

per

son.

Jus

t, ju

st a

wfu

l. A

wfu

l. I s

ee t

he p

hoto

s […

] I ju

st lo

ok h

ideo

us. (

Cre

ssid

a,

62, 5

yea

rs 5

mon

ths

sinc

e d

iagn

osis

)

Con

tinue

d



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Fear

and

an

xiet

yTh

at is

som

ethi

ng I’

m r

eally

wo

rrie

d a

bou

t b

ecau

se I’

m p

etri

fied

of

go

ing

blin

d […

] I’v

e ha

d a

cat

arac

t in

one

eye

for

abou

t fiv

e or

6 y

ears

; ver

y sl

ow

grow

ing.

[…] t

hen,

in F

ebru

ary

this

yea

r, I j

ust

thou

ght

it w

as g

ettin

g a

bit

wor

se […

] I w

ent

thre

e ti

mes

to

the

op

tici

ans

bec

ause

I w

as w

orrie

d a

bou

t m

y si

ght.

I w

as s

ort

of

sem

i-p

aran

oid

ab

out

losi

ng m

y si

ght.

The

co

nsul

tant

ass

ured

me

that

I co

uld

n’t

lose

my

sig

ht o

nce

I was

on

the

ster

oid

s an

d s

o I

felt

qui

te b

rave

the

n ab

out

that

[…] I

’d h

eard

so

man

y st

ori

es […

] the

y (p

eop

le) s

ay, ‘

Oh,

my

gran

ny w

ent

blin

d w

ith t

hat,

’ and

all

this

b

usin

ess.

[…] T

hen

abo

ut 4

wee

ks a

go

, my

eye

– ri

ght

eye

sta

rted

to

fad

e an

d f

ade

and

fad

e an

d f

ade

and

to

day

, as

we

spea

k, in

my

rig

ht e

ye, I

ca

n o

nly

dis

ting

uish

lig

ht a

nd d

ark.

I ca

n’t

dis

ting

uish

any

sha

pes

or

peo

ple

or

anyt

hing

[…] t

he c

atar

act

has

sud

den

ly ju

st g

row

n rig

ht a

cros

s m

y ey

e an

d it

’s g

one

like

that

in a

mat

ter

of w

eeks

[…] m

y b

igg

est

fear

is h

avin

g a

noth

er r

elap

se. (

She

ila, 7

3, 1

1 m

onth

s si

nce

dia

gnos

is)

I do

wor

ry a

bou

t m

y vi

sion

, and

gla

ucom

a ca

n b

e af

fect

ed b

y G

CA

as

I und

erst

and

. Cer

tain

ly w

ithin

the

last

few

mon

ths,

sin

ce I’

ve b

een

dia

gnos

ed, m

y vi

sion

’s c

hang

ed q

uite

a lo

t. (M

ary,

72,

2 m

onth

s si

nce

dia

gnos

is)

It w

as h

avin

g al

l the

se il

l ef fe

cts

and

wha

t's

it d

oing

to

my

insi

des

if it

's d

oing

thi

s vi

sib

ly t

o th

e sk

in a

nd t

he h

air?

Tha

t w

as a

wor

ry. (

June

, 75,

2 y

ears

si

nce

dia

gnos

is)

I’m a

lway

s in

ed

ge in

cas

e I l

ose

mor

e si

ght,

and

I th

ink

that

’s u

nder

stan

dab

le, f

rank

ly. [

…] I

’m r

educ

ing

my

ster

oid

s, I’

m o

n th

ree

mill

igra

ms

a d

ay a

t th

e m

omen

t, r

educ

ing

dow

n to

2.5

ove

r a

per

iod

of m

any

wee

ks. I

’m c

once

rned

tha

t w

hen

I fina

lly c

ome

off t

he s

tero

ids,

is it

all

goin

g to

com

e b

ack?

Tha

t is

a

fear

I ha

ve. (

Glo

ria, 7

2, 6

yea

rs s

ince

dia

gnos

is)

I fou

nd o

ut a

bou

t G

CA

and

pre

dni

solo

ne a

nd t

hat

sort

of t

hing

, and

the

ris

k of

blin

dne

ss a

nd, a

nd t

hat

– it

sort

of b

rings

you

dow

n to

ear

th a

bit

mor

e […

] I’d

look

ed a

fter

pat

ient

s on

ste

roid

s an

d t

heir

skin

was

so

frag

ile a

nd b

ones

cru

mb

ling,

and

I w

as t

hink

ing,

‘Oh

no. I

t’s a

ll go

ing

to h

app

en t

o m

e.’ [

…] I

t w

as ju

st t

he fe

ar o

f the

sid

e ef

fect

s of

ste

roid

s. (I

ris, 7

4, 4

yea

rs 7

mon

ths

sinc

e d

iagn

osis

)

…th

ese

alen

dro

nic

acid

tab

lets

whi

ch I

can’

t ta

ke n

ow b

ecau

se o

f the

pro

ble

ms

I’ve

had

with

my

gum

s. S

o at

the

mom

ent

I’m s

ort

of s

tuck

bet

wee

n th

e d

evil

and

the

dee

p b

lue

sea,

I d

on’t

wan

t to

lose

my

teet

h b

ut I’

ll ha

ve t

o if,

I’ve

got

to

the

take

the

tab

lets

I d

on’t

know

[…] I

’ve

got

to s

tand

up

for

an

hour

aft

er I’

ve t

aken

the

m a

nd I’

ve g

ot t

o ha

ve a

n em

pty

tum

my.

I’ve

got

to

do

it fir

st t

hing

in t

he m

orni

ng a

nd t

hey

seem

, I’m

a b

it sc

ared

of t

hem

to

be

hone

st. (

Ann

e, 8

5, 2

yea

rs 6

mon

ths

sinc

e d

iagn

osis

)

Unc

erta

inty

To m

e, o

ne o

f the

mos

t fr

ustr

atin

g th

ings

is w

hen

I’m t

alki

ng t

o so

meb

ody

med

ical

and

the

y ju

st g

ive

me

the

text

bo

ok

quo

tes

[…]

in t

erm

s o

f ho

w

long

the

co

ndit

ion’

s g

oin

g t

o la

st. I

mea

n, s

ome

doc

tors

are

stil

l say

ing,

‘Oh,

’ you

kno

w, ‘

2 ye

ars’

. Wel

l, m

ayb

e fo

r so

me

peo

ple

, but

the

re a

re a

lot

of

us o

ut h

ere

that

, yo

u kn

ow

, hav

e ha

d it

a lo

t lo

nger

. (Y

vonn

e, 6

5, 4

yea

rs 7

mon

ths

sinc

e d

iagn

osis

)

My

only

con

cern

is h

ave

I bee

n to

ld h

ow s

ever

e th

at t

his

cond

ition

can

be

and

, is

it so

met

hing

you

can

exp

ect

to k

eep

reo

ccur

ring;

you

kno

w, a

litt

le

bit

fore

ver

or a

fter

I’ve

got

rid

of t

his

and

gon

e th

roug

h th

is r

egim

e th

at w

e’re

goi

ng n

ow a

nd I

got

dow

n to

zer

o st

eroi

ds,

is t

hat

it or

is it

like

ly t

o re

cur

agai

n? (N

evill

e, 7

4, 1

2–18

mon

ths

sinc

e d

iagn

osis

)

I don

’t kn

ow w

heth

er it

’s ju

st, i

s it

late

nt o

r is

it ju

st c

ured

? (L

augh

s) I

don

’t kn

ow h

ow t

his

wor

ks. (

Joan

, 81,

1 y

ear

4 m

onth

s si

nce

dia

gnos

is)

Wel

l I'm

just

puz

zled

som

etim

es a

s to

[…] w

heth

er I

wou

ld h

ave

bee

n lik

e th

is w

heth

er I'

d g

ot t

his

othe

r th

ing,

or

whe

ther

, you

kno

w, i

t's

all p

art

of it

. (R

ober

t, 9

2, 2

yea

rs s

ince

dia

gnos

is)

Tab

le 5

C

ontin

ued



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help them maintain independence and retain or restore a sense of normality.

Acknowledgements The authors thank all the respondents who gave their time to be interviewed, and the PMRGCAuk charity for help with recruitment advertising.

contributors Study design and conception: CDM, JL, JCR, TH and JAP. Data collection: RB. Data analysis and interpretation: JL, RB, JCR, SLM and CDM. Manuscript preparation: JL, RB, JCR, CDM, SLM, JAP and TH.

Funding This paper presents independent research funded by the National Institute for Health Research School for Primary Care Research (NIHR SPCR), Grant Reference Number 294. CDM is funded by the NIHR Collaborations for Leadership in Applied Health Research and Care West Midlands, the NIHR School for Primary Care Research and an NIHR Research Professorship in General Practice (NIHR-RP-2014-04-026). SLM is funded by an NIHR Clinician Scientist Award. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

competing interests We have read and understood BMJ policy on declaration of interests and declare the following interests: CDM and RB had support from the National Institute for Health Research School for Primary Care Research (NIHR SPCR) for the submitted work. SLM received an honorarium for serving on a Medical Advisory Board for Chugai Roche Pharmaceuticals. All the authors have no other financial relationships with any organisation that might have an interest in the submitted work in the previous 3 years; no other relationships or activities that could appear to have influenced the submitted work.

Patient consent Detail has been removed from these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.

ethics approval Keele University’s Research Ethics Committee.

Provenance and peer review Not commissioned; externally peer reviewed.

data sharing statement Keele Research Institute for Primary Care and Health Sciences has established data sharing arrangements to support joint publications and other research collaborations. Applications for access to anonymised data from our research databases are reviewed by the Centre's Data Custodian and Academic Proposal (DCAP) Committee and a decision regarding access to the data is made subject to the ethical approval first provided for the study and to new analysis being proposed. Further information on our data sharing procedures can be found on the Institute’s website (http://www. keele. ac. uk/ pchs/ publications/ datasharingresources/) or by emailing primarycare. datasharing@ keele. ac. uk.

Open Access This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http:// creativecommons. org/ licenses/ by/ 4. 0/

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

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5. Aydin SZ, Direskeneli H, Sreih A, et al. Update on Outcome measure development for Large Vessel Vasculitis: report from OMERACT 12. J Rheumatol 2015;42:2465–9.

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Open Access Research What is the impact of giant cell ... · adaptations to their everyday lives. IntrOductIOn Giant cell arteritis (GCA) is the the most common form of primary systemic