Lorynn Teela

Background: Previous research shows that hemophilia negatively affects sexual functioning and well-being in men with hemophilia. To gain deeper understanding of the impact of hemophilia on sexual functioning and well-being, we conducted this qualitative study. Methodology: Experiences and needs of men with hemophilia were gathered through focus groups and semi-structured interviews and then thematically analyzed using MAXQDA. Results: Fourteen men with hemophilia (median age 53 years, range 22–71) participated. They reported both hemophilia-specific factors (e.g., bleeding or joint limitations) and chronic disease factors (e.g., pain or self-esteem) negatively affecting sexual functioning and well-being, with differences in the factors and the degree of impact observed based on the age of the men with hemophilia. For instance, older men (aged over 40 years) reported more mental and physical complaints compared to younger men (aged 40 or younger). Many men were uncertain about how to address sexual functioning. Conclusions: Tools (e.g., patient reported outcome measures, information materials, training) to provide and assess information about sexual functioning and well-being, to normalize the topic and to open up discussions between men with hemophilia and healthcare professionals are necessary. Future research should focus on developing tools for this purpose.

Background: Despite growing awareness of the need for better healthcare and research focused on women, sex-based inequalities persist, resulting in poorer health outcomes for women. Particularly, women with congenital bleeding disorders (CBDs) receive less care, are underrepresented in research, and experience diagnostic delays compared to men with CBDs, despite both exhibiting symptoms. Objectives: To identify lived experiences and care needs of women with CBDs. Design: A qualitative study, including focus groups and semi-structured interviews. Methods: Women were eligible to participate if they were between 18 and 40 years old, diagnosed with a CBD, and able to speak Dutch. Focus groups or semi-structured interviews about the themes (1) healthcare, (2) social functioning, (3) work and education, and (4) sexuality and intimacy were conducted in person or online, based on women’s preference. Thematic analysis was conducted in MAXQDA. Results: Twenty-eight women with a CBD participated. In general, as well as in primary healthcare settings, women experienced a lack of knowledge among healthcare providers and a tendency to downplay their symptoms. Furthermore, the women expressed limited awareness among healthcare professionals (HCPs) regarding the impact of CBDs on mental health, particularly during specific life phases (e.g., transition to high school). Women described the need to schedule social activities around their menstruation cycle and emphasized how heavy and prolonged menstrual bleeding negatively affected their work and education. Feelings of insecurity and shame were reported, primarily related to menstruation. Additionally, insecurity due to bruises and bleeding affects women’s sexuality. Lastly, a lack of information regarding pregnancy and delivery was reported. Conclusion: Improved symptom recognition and a better understanding of the impact of CBDs on the daily life and mental health of women is needed. Accessible informational materials for both women and HCPs, as well as platforms for sharing experiences, may help facilitate this process.

Background: Engaging patients in health care, research and policy is essential to improving patient‐important health outcomes and the quality of care. Although the importance of patient engagement is increasingly acknowledged, clinicians and researchers still find it difficult to engage patients, especially paediatric patients. To facilitate the engagement of children and adolescents in health care, the aim of this project is to develop an engagement game.Methods: A user‐centred design was used to develop a patient engagement game in three steps: (1) identification of important themes for adolescents regarding their illness, treatment and hospital care, (2) evaluation of the draft version of the game and (3) testing usability in clinical practice. Adolescents (12–18 years) were engaged in all steps of the development process through focus groups, interviews or a workshop. These were audio‐recorded, transcribed verbatim and analysed in MAXQDA.Results: (1) The important themes for adolescents (N = 15) were included: visiting the hospital, participating, disease and treatment, social environment, feelings, dealing with staff, acceptation, autonomy, disclosure and chronically ill peers. (2) Then, based on these themes, the engagement game was developed and the draft version was evaluated by 13 adolescents. Based on their feedback, changes were made to the game (e.g., adjusting the images and changing the game rules). (3) Regarding usability, the pilot version was evaluated positively. The game helped adolescents to give their opinion. Based on the feedback of adolescents, some last adjustments (e.g., changing colours and adding a game board) were made, which led to the final version of the game, All Voices Count.Conclusions: Working together with adolescents, All Voices Count, a patient engagement game was developed. This game provides clinicians with a tool that supports shared decision‐making to address adolescents' wishes and needs.Patient or Public Contribution: Paediatric patients, clinicians, researchers, youth panel of Fonds NutsOhra and patient associations (Patient Alliance for Rare and Genetic Diseases, Dutch Childhood Cancer Organization) were involved in all phases of the development of the patient engagement game—from writing the project plan to the final version of the game.

(1) Background: Health-related quality of life (HRQoL) is lower in patients with chronic kidney disease (CKD) compared to the general population. In 2011, the KLIK PROM portal was implemented in the Emma Children’s Hospital to monitor and discuss HRQoL in daily care. This study describes and assesses the implementation and use of the KLIK PROM portal in the pediatric nephrology department. (2) Methods: CKD patients (self-report, if 8–18 years of age) and their parents (proxy-report, if 1–8 years) were invited to complete HRQoL patient-reported outcome measures (PROMs): TNO-AZL Preschool children Quality Of Life (TAPQOL) or Pediatric Quality of Life Inventory for Children (PedsQL). The PROMs were completed before and discussed during outpatient consultations. The adaptation rate—the proportion of patients/parents who were invited and completed at least one PROM—was calculated. Reported HRQoL scores of CKD patients were compared to the general population. (3) Results: In total, 142 patients (proxy- and self-report) were invited, 112 patients completed at least one PROM (adaptation rate 79%). Patients (n = 84 with informed consent for scientific use) with CKD reported lower HRQoL and HRQoL was more often impaired compared to the general Dutch population. (4) Conclusions: The implementation of KLIK was successful and its use is feasible for daily care. Using KLIK, HRQoL problems can be easily identified and monitored.