Christopher R. Booth
Phoenix Children’s Hospital, Phoenix, Arizona, USA
Examining the mediating effects of resilience in the relationship between pain and employment among men with haemophilia
A biopsychosocial framework can be beneficial in better understanding the biological, psychological and social complexities of growing up with haemophilia. The complications that can accompany a haemophilia diagnosis are often associated with increased pain, which can impact the sense of self, resilience, and lead to depression and apathy. Thus, it is important to examine the challenges that may also limit potential employment. The objective of this research is to increase the understanding of the role of resilience in the relationship between pain and employment among men with haemophilia.
This study will include several assessment tools for pain, resilience, employment, depression and adherence. There will be a questionnaire with two pain-independent variables - one resilience-dependent study variable and one employment-dependent – besides other variables.
The hypothesized model expects that resilience acts as a mediating factor in the relationship between pain and employment productivity. The study results may be used to develop appropriate interventions and assist in the development of a program aiming at decreasing pain and increasing resilience. Hopefully this will help men with bleeding disorders to reach their employment potential.
Piet de Kleijn
Van Creveldkliniek and Dept of Rehabilitation, Nursing Science and Sports, UMC Utrecht, the Netherlands
Family-based Educational Program on Self-management and Functional Exercise
Comprehensive care in haemophilia promotes both medical and psychosocial health and involves a number of healthcare professionals. The medical doctor, nurse, social worker and physiotherapist ideally work together with the parents or caregivers of children and adolescents with haemophilia in order to provide optimal care. However, the importance of preventive comprehensive care (PCC) is still underestimated and a multidisciplinary family-based educational program for young patients on home treatment should be developed.
With the HERO Research Grant, the UMC Utrecht aims to develop and evaluate a first phase of such a PCC programme. This will be effectuated by the Van Creveldkliniek, being the oldest comprehensive care team, as a promising tool to embed such a program into regular care. It is planned to include children from 5 – 11 years and adolescents from 12-16 years. Endpoints will be qualitative as a start and quantitative in due time.
If the model is successful it can hopefully be applied in countries with limited access to clotting factor.
University Hospital Frankfurt, Frankfurt, Germany
Evaluation of pain levels and adherence to treatment among the European population with haemophilia
The concept of adherence is important for the care of patients with haemophilia and is increasingly recognized as an important factor for health-related quality of life and psychosocial lifestyle. Reduced adherence to treatment can worsen haemophilic arthropathy and chronic pain. Both, adherence and chronic pain were investigated and compared to the individual treatment regimen.
The study objective is to assess the level of treatment adherence and possible interaction to pain levels among a large number of haemophilia patients in Europe to explore potential factors that influence adherence to treatment and prophylaxis.
To reach this goal the questionnaire VERITAS Pro (Validated Haemophilia Regimen Treatment Adherence Scale for Prophylaxis) has been developed and validated. The questionnaire will lead to a total adherence score and six sub-scales including communication with the haemophilia centre.
Differences in measures of adherence can be expected by different socio-demographic factors and cultural differences between populations, as well as pain levels, age or the duration of prophylactic treatment. Hopefully, factors that cause patients to stray from their treatment regimen can be identified and may highlight areas where adherence can be improved.
This project has been developed in close cooperation with Werner Kalnins, MD, the chair of the German haemophilia patients’ organization, DHG. This study emerged from a project we finalized recently to asses adherence among the German haemophilia population.
Patricia Ribeiro Pinto
University of Minho and ICVS/3B’s – PT Government Associate Laboratory, Minho, Portugal
PSY_HaEMOPEQ - Effectiveness of two psychological interventions for prevention and management of pain, emotional regulation and promotion of quality of life in people with haemophilia: a randomized controlled trial and a national survey
Among people with haemophilia psychological factors play an important role in pain experience and quality of life. They also influence the disease in terms of clinical outcomes, because psychological distress usually occurs concomitantly with the disease. This project has aims to
implement a national survey to collect information regarding socio-demographic, clinical and psychosocial factors in Portuguese PWH.
evaluate the relative effectiveness of two psychological interventions, cognitive-behavioural therapy and hypnosis in order to prevent and manage pain, regulate emotional state and improve quality of life.
It will be investigated if psychological interventions could effectively enhance the disease management, preventing pain and suffering, promoting quality of life and indirectly reducing health care costs. Another relevant aspect in the field of haemophilia concerns inflammatory biomarkers as they have been shown to correlate with psychological variables. Therefore the cytokine profile will be measured.
It is expected that the study identifies problematic issues that can be elicited as potential targets for interventions in the survey. The randomised controlled trial potentially demonstrates that both psychological interventions impact positively on pain experience, emotional state and quality of life.
Dr Helen Taylor, Clinical Psychologist
Hampshire Hospitals NHS Foundation Trust, Hampshire, UK
"CARES" - Haemophilia Carriers' Experience Study: Life Choices, Psychosocial Needs and Parenting
Little is known about the psychosocial experience and needs of the haemophilia carrier population. The study seeks to obtain an in-depth insight into carriers’ experience through the use of qualitative and quantitative methods and analysis.
This study will be carried out in two phases, a qualitative and a quantitative phase. Initially, a number of focus groups will gather detailed qualitative information about carriers’ experiences, across a broad spectrum including carriers who have affected and/or unaffected children, and carriers who have not yet had, or chosen not to have children. This phase will identify themes that are potentially relevant for the wider carrier population. These themes will be used to develop a quantitative questionnaire for a larger group of haemophilia carriers, and to inform the inclusion of other, standardised measures. The results of this larger, quantitative analysis will then test out the significance of the themes across a larger population, and/or indicate any significant differences between the carrier population as a whole and people who do not carry the gene.
The study aims to contribute to understanding the experience of being a carrier, particularly how carriers make the decision whether or not to have children and what impact the decision-making process, and outcome, has on the carriers’ well-being, parental style and self-perception. This may in turn highlight possible areas of intervention for health services, such as in genetic counselling and parental support.