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

Kate Khair; Jarek Kriukow; Mike Holland

doi:10.2478/jhp-2021-0020

Abstract

Abstract 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.

Article

View Full Article

References

1. McCaffery M Beebe A. Pain: Clinical Manual for Nursing Practice. 1989. St Louis: CV Mosby.
2. Srinivasa NR, Carr DB, Cohen M, et al. The revised International Association for the Study of Pain definition of pain: concepts, challenges and compromises. Pain 2020; 161(9): 1976–1982. doi: https://doi.org/10.1097/j.pain.0000000000001939.
3. Khair K (Host). (2021, February 22). We don’t ask. They don’t tell – Pain and haemophilia (Part 2). In Haemcast. Haemnet. https://anchor.fm/haemnet/episodes/We-dont-ask--They-dont-tell---Pain-and-haemophilia-Part-2-eqak60 (accessed 14 September 2021).
4. Tagliaferi A, Franchinin M, Rivolta GF, Farace S, Quintavalle G, Copploa A. Pain assessment and management in haemophilia: A survey among Italian patients and specialist physicians. Haemophilia 2018; 24(5): 766–773. doi: https://doi.org/10.1111/hae.13600.
5. Humphries TJ, Kessler CM. The challenge of pain evaluation in haemophilia: can pain evaluation and quantification be improved by using pain instruments from other clinical situations? Haemophilia 2013; 19(2): 181–7. doi: https://doi.org/10.1111/hae.12023.
6. Holstein K, Klamroth R, Richards M, Carvalho M, Perez-Garrido R, Gringeri A. Pain management in patients with haemophilia: a European survey. Haemophilia 2012; 18: 743–752. doi: https://doi.org/10.1111/j.1365-2516.2012.02808.x.
7. Witkop M, Neff A, Buckner TW, et al. Self-reported prevalence, description and management of pain in adults with haemophilia: methods, demographics and results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study. Haemophilia 2017; 23(4): 556–565. doi: https://doi.org/10.1111/hae.13214.
8. Pinto PR, Paredes AC, Almeida A. Pain prevalence, characteristics, and impact among people with hemophilia: Findings from the first Portuguese survey and implications for pain management. Pain Med 2020; 21(3): 458–471. doi: https://doi.org/10.1093/pm/pny309.
9. van Genderen FR, Fischer K, Heijnen L, et al. Pain and functional limitations in patients with severe haemophilia. Haemophilia. 2006; 12(2): 147–53. doi: https://doi.org/10.1111/j.1365-2516.2006.01203.x.
10. Rambod M, Forsyth K, Sharif F, Khair K. Assessment and management of pain in children and adolescents with bleeding disorders: A cross-sectional study from three haemophilia centres. Haemophilia 2016; 22(1): 65–71. doi: https://doi.org/10.111/hae.12765.
11. Khair K, Bladen M, Holland M. Physical function and quality of life in adolescents with haemophilia (SO-FIT study). J Haem Pract 2014; 1(2): 11–14. doi: https://doi.org/10.17225/jhp00018.
12. Khair K, Holland M, Bladen M, Griffioen A, McLaughlin P, von Mackensen S. Study Of physical Function In adolescenTs with Haemophilia: the SO-FIT Study. Haemophilia 2017; 23(6): 918–925. doi: https://doi.org/10.1111/hae.13323.
13. Paredes AC, Teixeira P, Almeida A, Pinto PR. Prevalence and interference of chronic pain among people with hemophilia: A systematic review and meta-analysis. J Pain 2021 May 1:S1526-5900(21)00212-1. doi: https://doi.org/10.1016/j.jpain.2021.03.157. Epub ahead of print.
14. Ucero-Lozano R, López-Pina JA, Ortiz-Pérez A, Cuesta-Barriuso R. The relationship between chronic pain and psychosocial aspects in patients with haemophilic arthropathy. A cross-sectional study. Haemophilia 2021 Dec 8. doi: https://doi.org/10.1111/hae.14469. Epub ahead of print.
15. McLaughlin P, Hurley M, Chowdary P, Khair K, Stephensen D. Physiotherapy interventions for pain management in haemophilia: A systematic review. Haemophilia 2020; 26(4): 667–684. doi: https://doi.org/10.1111/hae.14030.
16. McLaughlin P, Hurley M, Chowdary P, Stephensen D, Khair K. How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study. Disabil Rehabil 2021 Dec 24: 1–8. doi: https://doi.org/10.1080/09638288.2021.2018053. Epub ahead of print.
17. Barry V, Buckner TW, Lynch ME, et al. An evaluation of PROMIS health domains in adults with haemophilia: A cross-sectional study. Haemophilia 2021; 27(3): 375–382. doi: https://doi.org/10.1111/hae.14321.
18. McLaughlin JM, Witkop ML, Lambing A, Anderson TL, Munn J, Tortella B. Better adherence to prescribed treatment regimen is related to less chronic pain among adolescents and young adults with moderate or severe haemophilia. Haemophilia 2014; 20(4): 506–12. doi: https://doi.org/10.1111/hae.12360.
19. Witkop M, Lambing A, Kachalsky E, Divine G, Rushlow D, Dinnen J. Assessment of acute and persistent pain management in patients with haemophilia. Haemophilia 2011; 17(4): 612–9. doi: https://doi.org/10.1111/j.1365-2516.2010.02479.x.
20. Di Minno MND, Santoro C, Corcione A, et al.; HAEMODOL Study Group (Appendix 1). Pain assessment and management in Italian haemophilia centres. Blood Transfus 2020; 19(4): 335–42. doi: https://doi.org/10.2450/2020.0085-20.
21. McLaughlin P, Hurley M, Chowdary P, Stephensen D, Khair K. The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study. Disabil Rehabil 2021 Dec 24: 1–9. doi: https://doi.org/10.1080/09638288.2021.2018054. Epub ahead of print.
22. Roussel NA. Gaining insight into the complexity of pain in patients with haemophilia: State-of-the-art review on pain processing. Haemophilia 2018; 24 Suppl 6: 3–8. doi: https://doi.org/10.1111/hae.13509.
23. Humphries TJ, Kessler CM. Managing chronic pain in adults with haemophilia: current status and call to action. Haemophilia 2015; 21(1): 41–51. doi: https://doi.org/10.1111/hae.12526.
24. Wells AJ, Whitaker S, Gray D, Mangles S, Hislop-Lennie K, Stephensen D. Pain memories: A new concept to consider in the management of chronic pain in people with haemophilia. Haemophilia 2021 Dec 24. doi: https://doi.org/10.1111/hae.14480. Epub ahead of print.
25. Srivastava A, Santagostino E, Dougall A, et al.; WFH Guidelines for the Management of Hemophilia panelists and co-authors. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia 2020; 26 Suppl 6: 1–158. doi: https://doi.org/10.1111/hae.14046. Erratum in: Haemophilia 2021; 27(4): 699.

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

Abstract

Article

References

PDF Download

Authors

Kate Khair

Jarek Kriukow

Mike Holland