How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study

McLaughlin, Paul; Hurley, Michael; Chowdary, Pratima; Stephensen, David; Khair, Kate

doi:10.1080/09638288.2021.2018053

Cited by 10 publications

(9 citation statements)

References 45 publications

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“…Participants reported longstanding pain memories, remembering pain being present from childhood following bleeds. This has been shown in other studies [10,16] and is known to affect long-term physical and mental health by impacting on daily routine and hobbies. PWH reporting higher pain levels have also been shown to report worse health using patient reported outcome measures compared to peers with haemophilia and no pain [17] .…”

Section: Discussionsupporting

confidence: 65%

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

Khair¹,

Kriukow²,

Holland³

2021

The Journal of Haemophilia Practice

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Introduction Pain is recognised as a subjective phenomenon, often defined as ‘whatever the experiencing person says it is, existing whenever the experiencing person says it does’. Pain is a critical aspect of life for many people with haemophilia (PWH) but is under-recognised and inconsistently managed by clinicians. As haemophilia management moves towards non-factor-based treatments which may normalise life experience, it is unclear how this will impact on the experience and management of pain. Aims The Perceptions of Pain in Haemophilia study aimed to identify the impact of pain on men with haemophilia in the UK. Methods The study used mixed qualitative research methods (paper-based questionnaires and focus group interviews). Eligible PWH aged >18 years were invited to participate in a focus group to discuss pain, assessment and management. Each focus group discussion was recorded, transcribed and analysed thematically. Results Eighteen participants (13 haemophilia A (12 severe) and 5 severe haemophilia B) age range 18–58 years (median 32.5 years) joined focus groups conducted using an online video platform. The majority (95%) were treated with prophylaxis and reported few recent bleeds. Three main themes emerged: the impact of pain, managing pain, and factors influencing the experience of pain. Participants connected their earliest experiences of pain with childhood; it impacted their mental health and wellbeing, daily habits, routines, sports, hobbies, social life, work and education. Participants recognised the difference between the pain of acute bleeds and arthritic pain. Many did not like taking strong analgesics due to side-effects and concerns around addiction. Participants doubted the value of pain scales and noted a lack of empathy and understanding among health care professionals (HCPs), but valued physiotherapists. Participants recognised the value of talking about the negative impact of their pain experiences; however, they reported that family members, who often provided the most support, could not always truly understand their pain. Conclusion Pain is ‘normal’ for PWH, who adopt it into part of their everyday life experience. HCPs are ideally placed to impact this experience but seem to lack insight as to the extent of pain and how to manage it beyond prescribing stronger analgesia. The social and psychological implications of chronic pain should be better addressed by HCPs. This includes being cognisant that new therapeutic options will not resolve old pain.

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Section: Discussionsupporting

confidence: 65%

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

Khair¹,

Kriukow²,

Holland³

2021

The Journal of Haemophilia Practice

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“…It is likely that they grew up with advice to avoid PA, have had negative experiences with PA‐related bleeds, and are now living with sequelae of haemophilic arthropathy, pain and functional limitations 50,51 . This may contribute to a perception that PA is associated with the development of bleeds, injuries and joint damage 46,47,52 . For this group, lack of accessible equipment and transportation and unqualified personnel who are unable to adapt exercises for people with disabilities may be important environmental barriers 48 …”

Section: Physical Activity: Status Influences and Recommendationsmentioning

confidence: 99%

“… 50 , 51 This may contribute to a perception that PA is associated with the development of bleeds, injuries and joint damage. 46 , 47 , 52 For this group, lack of accessible equipment and transportation and unqualified personnel who are unable to adapt exercises for people with disabilities may be important environmental barriers. 48 …”

Section: Physical Activity: Status Influences and Recommendationsmentioning

confidence: 99%

Promoting physical activity for people with haemophilia in the age of new treatments

et al. 2022

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Haemophilia treatment has seen great advances in recent years with an accompanied reduced risk of physical activity (PA) related bleeds. Based on its known health benefits, people with haemophilia (PWH) are currently encouraged to regularly engage in PA. However, this may not always translate to increased levels of PA. In this narrative review we aim to provide a brief overview of what is currently understood regarding PA levels and influences for the three broad age groups of children and adolescents, adults and older adults. We also provide recommendations for members of the haemophilia team on important aspects related to promotion of PA in their clinical practice. We highlight that PA behaviour is multifactorial and that many PWH still have limited access to adequate care. Whilst some still face unique challenges to being more physically active, overall, the barriers and facilitators to activity are very similar to that of the general population.

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“…have also reported that PWH see pain as part of their haemophilia. 25 It is possible that as PWH believe pain is part of life with haemophilia, they don't report it and clinical staff don't ask about it outside of acute bleeding episodes. This disconnect is recognised and may relate to lack of evidence base and guidelines for treating haemophilia related pain.…”

Section: Discussionmentioning

confidence: 99%

Prevalence and perceptions of pain in people with haemophilia: A UK study

Khair,

McLaughlin,

Roussel

et al. 2023

Haemophilia

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IntroductionJoint bleeds in haemophilia cause destruction of articular structures, impaired function and pain. Up to 70% of people with haemophilia (PWH) report chronic pain. Little is known about the pain experiences in PWH in the UK.AimTo identify prevalence and perceptions of pain among PWH living in the UK.MethodsA cross‐sectional, non‐interventional survey study conducted among PWH (all severities). The survey incorporated elements from validated tools (EQ‐5D; EQ‐VAS) and was distributed via participating treatment centres.ResultsFive hundred and ninety‐nine PWH responded, 91% aged > 18. 81% used factor prophylactically or on demand. More pain was reported by those treated on demand versus prophylaxis particularly in those who reported daily pain. 65% reported ‘problem joints’ based on individual impact rather than medically defined ‘target joints’, 2/3 reported multiple joint issues. The ankle was most commonly affected. 59% reported frequent pain, with 56% aware of pain constantly or most of the time and were more likely to report less favourable EQ‐5D or EQ‐VAS scores (p < .001). Pain frequency/awareness was consistent across all severities. Most discussed pain with care teams, 31% only when asked; 25% did not discuss it. Pain discussions resulted in physiotherapy referral (63%) analgesia prescription (48%), and a minority specialist pain referral (9%). Most felt well supported with regard to their pain, but 70% reported learning to live with it.ConclusionPain affects PWH of all ages and severities even in a well‐resourced country significantly impacting quality of life. Clinicians must be more aware of chronic pain in PWH. Biopsychosocial approaches to pain assessment and management are recommended.

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How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study

Cited by 10 publications

References 45 publications

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

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

Promoting physical activity for people with haemophilia in the age of new treatments

Prevalence and perceptions of pain in people with haemophilia: A UK study

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