Assessment of Haemophilia Patients' and Other Bleeding Disorders Needs of Psychosocial Support and Health Care Needs and Their Utilization in Haemophilia Treatment Centres (ILLUSTRATE Study)
Authors: von Mackensen Sylvia , Gallmann Louis , Siebert Manuela , Halimeh Susan 
Published: December 2023

Background:
Psychological support for chronically ill patients as an integral component of medical care could improve health-related quality of life (HRQoL) of patients and contribute to a reduction in treatment costs. A meta-analysis including almost 3,000 patients revealed that persons with hemophilia (PWH) are at increased risk for depression, anxiety, and ADHD compared to the general population (Al-Huniti et al., 2020). Studies have shown that the self-efficacy, coping mechanisms, and HRQoL of parents of hemophilic children were improved by self-help programs, and depression, anxiety, and parenting stress were reduced. Although different psychological interventions have been used to help PWH to cope with their psychological problems, there is a gap between patients' need for psychosocial support from the perspective of health care professionals (HCPs) and their utilization by PWH.
The aim of the ILLUSTRATE study was to assess the need for psychosocial support and medical care in patients with inherited bleeding disorders (IBD) and in HCPs and their use in hemophilia centers.
Methods:
Patients with IBD (PIBD) were invited by different German patient organizations (Deutsche Bluthilfe, DHG, IGH, Hämophilie 2000) to participate in an on-line surevey (from December 2022-June 2023). In addition, HCPs were asked to complete a similar on-line survey via the mailing list of the German Society for Thrombosis and Hemostaseology. A positive ethical approval for the study was obtained by the Local Psychological Ethics Committee at the University Medical Centre in Hamburg, Germany (LPEK-0578). The questionnaire for patients consisted of the following aspects: socio-demographic data, medical background, care services and psycho-social support, dealing with stress and difficult situations, dealing with special situations that may arise or be exacerbated by the bleeding disorder, offer of psycho-social counseling/support, and need for expansion. The questionnaire for HCPs contained the following themes: personal background, need of patients for psycho-social counseling/support (PSCS), supply of PSCS and need for expansion, utilization, and benefits of PSCS.
Results:
In total, 154 patients and parents of children with an IBD participated (72 PIBD,80 parents, 2 others) with a mean age of 41.06±13.3 years, 60.4% were female. In addition, 65 HCPs completed the respective survey (34 physicians, 27 nurses and 4 others) with a mean age of 48.11 ± 12.7 years, in average they worked since 13.1±10.8 years in haemostaseology, 78.5% worked in a hemophilia comprehensive care center (HCCC), 20% in a hemophilia treatment center (HTC) and 1.5% in a homecare service. In the IBD group (patients, parents) most were married (59.1%), lived with a partner (83.8%) and worked full- or part-time (66%). Most PIBD had hemophilia (74%) with a severe form (81.8%). 28.6% of the IBD group felt little to not at all supported to overcome psycho-social challenges. It was demonstrated that they had an intermediate stress resilience (14.76±3.1), with 1/3 showing a low resilience. When asking what coping strategies they used in stress situations, 26% mentioned that they ignore difficult situations and 16% compensated their stress with drugs and alcohol. 20% often to always felt helpless and overwhelmed due to their IBD and 31% rarely to never received support in these situations. 71% reported to have a need for PSCS, 57% wished more support services (69% mainly at the HTC), 71% felt not to have enough information about these services and 64% would use them more often if they were more accessible. 52% of HCPs found that the IBD group has a need of PSCS, they assumed that parents and adolescent patients would benefit most of these services and expected the highest advantage from psychological counseling. 60% thought that there is a need for information and education. The IBD group and HCPs preferred PSCS in presence, the IBD group would use services as well via phone or digital.
Conclusions:
Although offered psycho-social support programs are rarely used by patients, a large proportion of the IBD group and HCPs confirmed a need for it. Increased accessibility to PSCS and more information were identified as a factor for increased use of this support programs. Additional digital psycho-social support services were desired and represent a helpful alternative if services are not available on site.