Factors associated with pain severity, pain interference, and perception of functional abilities independent of joint status in <scp>US</scp> adults with hemophilia: Multivariable analysis of the Pain, Functional Impairment, and Quality of Life (P‐FiQ) study

Kempton, Christine L.; Buckner, Tyler W.; Fridman, Moshe; Iyer, N.C.; Cooper, David L.

doi:10.1111/ejh.13025

Cited by 23 publications

(34 citation statements)

References 21 publications

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“…Similarly, in the US, Pain, Functional Impairment and Quality of life (P‐FiQ) study, a median acute pain score of 5.97/10 and persistent pain score of 4.22/10 was reported in 381 adult PWH . In the same population, level of pain was directly correlated with the joint functional impairment …”

Section: Introductionmentioning

confidence: 87%

“…5 In the same population, level of pain was directly correlated with the joint functional impairment. 18 Despite the relevant burden of pain in PWH, only few clinical studies have investigated the non-pharmacological or pharmacological treatments for pain or the adverse effects of pain on the health and quality of life in this population. Therefore, evidence-based and agreed algorithms or guidelines for pain management in PWH are an unmet need for the haemophilia community, 15,19 although several expert opinion and reviews have been published.…”

Section: Introductionmentioning

confidence: 99%

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Pain assessment and management in haemophilia: A survey among Italian patients and specialist physicians

et al. 2018

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Section: Introductionmentioning

confidence: 87%

Section: Introductionmentioning

confidence: 99%

Pain assessment and management in haemophilia: A survey among Italian patients and specialist physicians

et al. 2018

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“…1,56 Poor mobility, self-care issues, and inability to perform usual daily activities 57,58 Social isolation Inability to participate in social or sporting activities 59 Pain Higher pain levels and functional impairment associated with anxiety, depression and unemployment. 60,61 Pain/discomfort is an area where most individuals report experiencing 'extreme' issues. 54 Individuals may experience anger and frustration due to the pain, inconvenience and erratic nature of bleeds 62 Psychological Anxiety/depression are the areas where most individuals report experiencing 'extreme' issues 54 Personal productivity Adverse impact on educational achievement and work productivity due to absence and difficulties due to functional impairments and pain 57,63,64…”

Section: Burden Causementioning

confidence: 99%

How to discuss gene therapy for haemophilia? A patient and physician perspective

et al. 2019

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Gene therapy has the potential to revolutionise treatment for patients with haemophilia and is close to entering clinical practice. While factor concentrates have improved outcomes, individuals still face a lifetime of injections, pain, progressive joint damage, the potential for inhibitor development and impaired quality of life. Recently published studies in adeno‐associated viral (AAV) vector‐mediated gene therapy have demonstrated improvement in endogenous factor levels over sustained periods, significant reduction in annualised bleed rates, lower exogenous factor usage and thus far a positive safety profile. In making the shared decision to proceed with gene therapy for haemophilia, physicians should make it clear that research is ongoing and that there are remaining evidence gaps, such as long‐term safety profiles and duration of treatment effect. The eligibility criteria for gene therapy trials mean that key patient groups may be excluded, eg children/adolescents, those with liver or kidney dysfunction and those with a prior history of factor inhibitors or pre‐existing neutralising AAV antibodies. Gene therapy offers a life‐changing opportunity for patients to reduce their bleeding risk while also reducing or abrogating the need for exogenous factor administration. Given the expanding evidence base, both physicians and patients will need sources of clear and reliable information to be able to discuss and judge the risks and benefits of treatment.

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“…In addition, given their inability to perform a function requiring active effort due mainly to joint damage, a proportion of PWH was unemployed (10.2%). This argument is supported by Kempton et al, who attributes the high percentage of unemployed PWH related to the number of severe existent osteoarthritis. Another hypothesis could be that the employer is concerned by the potential increased number of work absence.…”

Section: Discussionmentioning

confidence: 89%

“…This argument is supported by Kempton et al,12 who attributes the high percentage of unemployed PWH related to the number of severe existent osteoarthritis. Another hypothesis could be that the employer is concerned by the potential increased number of…”

mentioning

confidence: 86%

The impact of haemophilia on the social status and the health‐related quality of life in adult Lebanese persons with haemophilia

et al. 2019

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Introduction Health‐related quality of life (HRQoL) studies are increasingly needed to prevent and improve the medical care of persons with haemophilia (PWH). Aim We assessed the impact of haemophilia on HRQoL and social status of adult Lebanese PWH compared to a reference population. Methods In this case‐control study, 60 severe and moderate PWH were compared to 112 healthy controls. Detailed socio‐demographic data and disease characteristics were collected, and HRQoL was assessed using the SF‐36 questionnaire. Results Age, body mass index and the percentage of married people were similar in PWH and controls. A greater proportion of controls attained a higher educational level than cases (88.4% vs 59.3%, respectively, P < 0.001). PWH were more likely to have a job requiring physical activity than controls (55.9% vs 31.4%) and more likely to be unemployed (10.2% vs 1.0%), whereas more controls had higher socio‐economic jobs (10.5% vs 1.7%). PWH had significantly (P < 0.001) worse scores in all SF‐36 domains except for energy/fatigue. Affected targeted joints (2.7 ± 1.5) and monthly bleeding frequency (2.9 ± 2.4) were inversely correlated with almost all SF‐36 domains. Only 26.7% of PWH walk normally, and walking abnormalities were inversely correlated with all SF‐36 domains except role‐emotional and emotional well‐being. Conclusion As compared with controls, the majority of Lebanese PWH has difficulties in social integration, has severe physical limitations and psychological impairments.

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Factors associated with pain severity, pain interference, and perception of functional abilities independent of joint status in US adults with hemophilia: Multivariable analysis of the Pain, Functional Impairment, and Quality of Life (P‐FiQ) study

Cited by 23 publications

References 21 publications

Pain assessment and management in haemophilia: A survey among Italian patients and specialist physicians

Pain assessment and management in haemophilia: A survey among Italian patients and specialist physicians

How to discuss gene therapy for haemophilia? A patient and physician perspective

The impact of haemophilia on the social status and the health‐related quality of life in adult Lebanese persons with haemophilia

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