Psychological interventions for people with hemophilia

Palareti, Laura; Melotti, Giannino; Cassis, F.; Nevitt, Sarah J; Iorio, Alfonso

doi:10.1002/14651858.cd010215.pub2

Cited by 9 publications

(7 citation statements)

References 86 publications

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“…After the educational training, and despite the low margin for improvement, we observed an average of a 15% difference in the test score before and after the educational intervention. These results reinforce previous recommendations to act on the patients’ understanding and acceptability of their disease and treatment, as there is always room for improvement and enhancing quality of life [ 25 , 26 ]. Indeed, patients have high expectations for next-generation treatments, especially related to a reduced burden of administration, improved outcomes and more independence to live a “normal life” [ 27 , 28 ].…”

Section: Discussionsupporting

confidence: 87%

Quality of life, self-reported outcomes and impact of education among people with moderate and severe hemophilia A: An integrated perspective from a Latin American country

Torres,

Peñuela,

Forero

et al. 2023

PLoS ONE

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Collecting and interpreting self-reported outcomes among people with hemophilia A supports the understanding of the burden of the disease and its treatment to improve holistic care. However, in Colombia, this information is limited. Therefore, this study aimed to describe the knowledge, perception and burden of hemophilia A from the patients’ perspective. A cross-sectional study was conducted in the context of a hemophilia educational bootcamp held from November 29th to December 1st, 2019, in Medellin, Colombia. The bootcamp was organized by a hemophilia patient association responsible for contacting and inviting patients with hemophilia A (PwHA). Information on patients’ health beliefs, treatment experiences, and health-related quality of life (HRQoL) was obtained through focus groups, individual interviews and the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire. A total of 25 moderate or severe PwHA were enrolled in this study and completed the PROBE questionnaire. Acute pain was the most frequently reported symptom, with 88% of the patients reporting the use of pain medication. Difficulty with activities of daily living was reported by 48%. Furthermore, 52% reported having more than 2 spontaneous bleeding events in the last year. Treatment was administered at home for 72% of patients, with regular prophylaxis as the most common treatment regimen. In terms of overall HRQoL, the median EQ-5D VAS score was 80 (IQR: 50–100). PwHA in Colombia still suffer from disease complications related to bleeding events, pain and disability that affect their HRQoL, which highlights the need to develop patient-centered initiatives to improve the wellness of this population.

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Section: Discussionsupporting

confidence: 87%

Quality of life, self-reported outcomes and impact of education among people with moderate and severe hemophilia A: An integrated perspective from a Latin American country

Torres,

Peñuela,

Forero

et al. 2023

PLoS ONE

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“…Indeed, individual variability and psychosocial factors are potential contributors to pain experience in patients, and the diverse methodologies employed in pain measurement amplify this variability, emphasising the need for careful consideration in research approaches. 56,57 The emergence of acute pain in a location not previously reported in the patient's medical history should be carefully considered during clinical evaluations, as it could potentially serve as a crucial factor for an emergent additional diagnosis in PWH. In this view, pain can be seen in its traditional physiological protective role, being a burdensome but 'good' signal that prevents the consequences of an untreated disease.…”

Section: Discussionmentioning

confidence: 99%

“…This points to the presence of additional variables influencing the diversity in pain perception, necessitating focused attention from the research community. Indeed, individual variability and psychosocial factors are potential contributors to pain experience in patients, and the diverse methodologies employed in pain measurement amplify this variability, emphasising the need for careful consideration in research approaches 56,57 …”

Section: Discussionmentioning

confidence: 99%

The good, the bad and the ugly of pain in haemophilia: Recent evidence on the epidemiology, molecular mechanisms and knowledge gaps preventing optimal treatment

Benemei,

Mattia,

Di Minno

2024

Haemophilia

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IntroductionHaemophilia is an inherited, X‐linked blood clotting disorder caused by the deficiency of coagulation factors VIII (FVIII, haemophilia A) or IX (FIX, haemophilia B). Spontaneous bleeds are common in severe forms of haemophilia and can also occur in moderate and mild haemophilia. Severe or repeated bleeding at a joint can evolve into chronic haemophilic arthropathy, with functional damage of the joint, disability, and intense chronic articular pain. Nonetheless, acute and chronic pain may emerge due to secondary conditions related to bleedings.AimThis narrative review aims to critically discuss the most recent evidence about pain in haemophilia to give healthcare professionals a clear picture of current knowledge hence favouring the optimisation of clinical management of pain.MethodsExtensive literature search with the terms ‘hemophilia’ AND ‘pain’, focusing on the time window 2021–2023.ResultsAcute and chronic pain is a critical aspect of haemophilia at all ages. It should be considered a multifaceted phenomenon, with a positive role as an early emergency signal of a clinical event (haemarthrosis), and numerous detrimental aspects linked to its burden that heavily affects the health‐related quality of life, with psychological and social consequences.ConclusionDespite its prevalence and frequency in people with haemophilia, pain is often underestimated by healthcare professionals, leading to insufficient and inadequate treatment, also due to uncertainty linked to the presence of the coagulation disorder or arthritic flares.

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“…Few randomized controlled trials have been conducted focusing on psychology among bleeding disorder populations. A recent Cochrane review of only seven studies found limited evidence for the efficacy of psychological therapies to improve QOL in PwH 35 . Recent advancements in controlling bleeding could allow focus to shift towards exploration of complex psychological factors in improving QOL among PwBD.…”

Section: Discussionmentioning

confidence: 99%

Pain attitudes and pain outcomes among people with bleeding disorders: Results from community voices in research

Pierce,

Branscum,

Irvin

et al. 2024

Haemophilia

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IntroductionAmong people with bleeding disorders (PwBD), pain is a major problem and pain treatments are often ineffective. Understanding of psychological factors involved in pain processing is limited. Maladaptive pain attitudes are associated with worse pain outcomes and adaptive pain attitudes are associated with better outcomes in high pain conditions, but relationships between pain attitudes and pain outcomes are so far unexplored among PwBD.AimTo investigate relationships between pain attitudes and pain outcomes among PwBD.MethodsPain attitudes were measured with the Survey of Pain Attitudes, containing two adaptive scales (Control and Emotion) and five maladaptive scales (Disability, Harm, Medication, Solicitude, Medical Cure). Adults with bleeding disorders, who had pain, and were enrolled in Community Voices in Research were eligible. Participants (n = 72) completed an online survey. Cross sectional associations between pain attitudes and pain outcomes (pain and prescribed pain medication use) were investigated using logistic regression.ResultsAfter adjustment for covariates, greater Control attitudes were associated with lower odds of more severe pain, and greater Disability, Harm, and Medication attitudes were all associated with higher odds of more severe pain and with higher odds of any prescribed pain medication use and opioid pain medication use.ConclusionsWe presented compelling evidence of relationships between pain attitudes and pain outcomes in PwBD, though corroboration is needed from other populations. Our findings suggest that modification of pain attitudes presents a possible avenue for interventions to improve pain outcomes and increase patient satisfaction with pain management.

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Psychological interventions for people with hemophilia

Abstract: Analysis 2.3. Comparison 2 Computerised learning compared to no intervention, Outcome 3 Coping strategies: selfmanagement ability and transition readiness (change from baseline

Cited by 9 publications

References 86 publications

Quality of life, self-reported outcomes and impact of education among people with moderate and severe hemophilia A: An integrated perspective from a Latin American country

Quality of life, self-reported outcomes and impact of education among people with moderate and severe hemophilia A: An integrated perspective from a Latin American country

The good, the bad and the ugly of pain in haemophilia: Recent evidence on the epidemiology, molecular mechanisms and knowledge gaps preventing optimal treatment

Pain attitudes and pain outcomes among people with bleeding disorders: Results from community voices in research

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