“It's a way of life”: Results from the Perceptions of Pain in Haemophilia study

Khair, Kate; Kriukow, Jarek; Holland, Mike

doi:10.2478/jhp-2021-0020

Figures & Tables

With chronic pain being accepted by many people with haemophilia as part of everyday life, there is a need to better address its social and psychological impacts and to improve awareness of treatments beyond analgesia. As new therapies for haemophilia continue to improve, we must also be cognisant that new therapies will not resolve old pain.© Shutterstock

Participant demographics

PARTICIPANT NUMBER	HAEMOPHILIA DIAGNOSIS^*	AGE	CURRENT TREATMENT^†
01	A	18	EHL
02	B	22	EHL
03	A	39	SHL
04	A	33	SHL
05	B	27	EHL
06	B	21	EHL
07	A	42	Bi-specific antibody
08	A	57	Bi-specific antibody
09	B	37	EHL
10	A	40	EHL
11	A	25	Bi-specific antibody
12	A	58	EHL
13	B	32	EHL
14	A	40	SHL
15	A	22	SHL (on demand)
16	A (moderate)	18	SHL
17	A	57	Bi-specific antibody
18	A	32	Bi-specific antibody

Themes discussed by participants

THEME / SUB-THEME	HOW MANY FOCUS GROUPS DISCUSSED IT (N=3)	TOTAL NUMBER OF TIMES DISCUSSED
Factors influencing the experience of pain	3	108
Quality of support and treatment from HCPs	3	51
• Over-reliance on painkillers	3	11
• Confusing and invalid scales for assessing pain	3	9
• Lack of empathy and understanding	3	9
• Support from physiotherapists and haemophilia centres	3	7
• Irrelevant treatment and lack of knowledge about the condition	2	13
• Changes of specialists	1	2
Being able to talk to someone about the pain	3	16
Current state of knowledge	3	12
People's lack of awareness of haemophilia	3	10
Ageing	3	8
Understanding own pain and reacting to it	2	7
Masking pain	2	4
Ways to manage pain	3	86
Accepting and getting used to pain	3	26
Physical activity and managing through the pain	3	15
Taking medication	3	13
Maintaining a positive mindset	3	9
Adjusting movement/position	3	7
Using ice	2	7
Using crutches	1	2
Other (yoga, hot baths, other focus)	2	7
The impact of pain	3	32
Mental health	3	11
Daily habits/routine	3	8
Sport and hobbies	3	7
Work	2	3
School and education	1	2
Social life	1	1

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Introduction	Introduce self and study Emphasise non-judgemental position, discussion not a Q&A Assure confidentiality Check permission to record the conversations; direct quotes will be used but will be fully anonymised
Background information	Invite the participants to introduce themselves (include age and where they are currently living, type and severity of haemophilia, current treatment)
The lived experience of having pain	Can you tell us about your first memories of (joint) bleeding? How this was managed? At home and in hospital When did they first realise they had pain? How many years ago is that? How/does it relate with their haemophilia? How/does it affect day-to-day life? What impact on work, study, family life? (PROBE) Does it affect how active they are? How much? Why? Would you like to do more?
Who do you talk to about your pain?	Do your haemophilia treaters ask about pain? Do you use pain assessment tools? Are these useful (why/why not?)? Have you told your treatment team about your pain? If not, why not? If yes, how do they respond? What have you been told? (PROBE) Who in the team is interested in pain? Anyone else – GP, etc? What do you do/use to manage pain?
How do you manage your pain?	Do they use factor concentrate/treatment for analgesic effect? Do they use OTC meds/street drugs? What have you done previously? Why did they choose these? (PROBE) Did anything work well? Why do they think it worked? What did not work – why not?
What is causing the pain	Why do you think you have pain? (PROBE) Have you noticed any particular things that happen to make you have more pain? What is the relationship between these events and your pain? Do you think your pain can be made easier/managed better? And how?
Close	Have you any questions or thoughts to add about the things we have discussed today? Thanks for participating and next steps

“It's a way of life”: Results from the Perceptions of Pain in Haemophilia study

Figures & Tables

Participant demographics

Themes discussed by participants

j_jhp-2021-0020_tabapp_001

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