Illness perceptions and their relation to physical activity in children and adolescents with hemophilia

Abstract

Background: Hemophilia is a rare bleeding disorder in which illness perceptions have seldom been studied. Illness perceptions are important in predicting patients' behavior. Due to the risk of bleeding and joint damage, healthcare professionals often discourage some physical activities. Those restrictions can be difficult to follow for pediatric patients. This study investigates the relationship between illness perceptions, physical activity behavior, and intentions amongst this population. Methods: Twenty-four 6-18-year-old patients with severe hemophilia completed the Brief Illness Perception Questionnaire. A questionnaire assessing their level of physical activity and intentions toward safe and higher-risk physical activity was also administered. Clinical and sociodemographic data were collected. Associations were studied using hierarchical clustering of physical activity patterns, and Mann-Whitney U comparisons between clusters. Results: Perceptions ranged from slightly to moderately threatening, and 20-30% of participants had highly threatening perceptions on Consequences, Identity, Concern, and Emotional response. The subgroup who engaged in more high-risk physical activity and had stronger intentions to engage in this type of activity also held more concerns and perceived more symptoms. Conclusion: Patients at risk of non-adherence to recommendations concerning physical activity have more threatening illness beliefs that could be addressed during specific interventions or routine appointments. Addressing illness beliefs could be an element to behavior change. Strong emotional responses to hemophilia also stresses the need for psychosocial support strategies.

A systematic review of physical activity in people with haemophilia and its relationship with bleeding phenotype and treatment regimen

“… 21 , 22 , 23 , 24 , 25 , 26 , 27 After the inclusion and exclusion criteria were applied, 36 articles were eligible. 14 , 15 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 A PRISMA flow diagram of the screening and selection process is provided in Figure 1 .…”

“…The Axis tool appraisal identified moderate‐to‐high risks of bias amongst studies (Table 2 ). Considerable rates of selection bias were evident due to convenience sampling methods, a lack of specificity in defining target populations in 32 studies 14 , 15 , 21 , 49 , 50 , 52 , 53 , 54 and unclear inclusion and exclusion criteria in 21 studies. 14 , 15 , 34 , 36 , 37 , 38 , 39 , 40 , 41 , 43 , 49 , 50 Non‐response bias was also suspected for all except four studies, 21 , 33 , 42 , 51 methods to address non‐response were described by four studies 40 , 47 , 49 , 53 and characteristics of non‐responders were provided in four studies.…”

“…Evidence of potential selective reporting was suspected in 13 studies as data were either not fully presented, or additional data which were not clearly described a priori in the methods were presented. 21 , 46 , 51 , 53 , 54 How missing data were managed was also unclear in 20 studies. 21 , 22 , 41 , 42 , 43 , 47 , 49 , 50 , 51 , 53 …”

“…Approximately 1361 children and adolescents (0–18 years) and 1791 adults (18–85 years) were represented (estimated numbers due to heterogeneity of age category boundaries and four studies 23 , 24 , 46 , 53 reported demographics of the total sample and not just those included in the PA analysis). Mixed samples of children, adolescents and adults with haemophilia were included in 10 studies, 14 , 51 with children and/or adolescents only included in 15 studies, 22 , 23 , 24 , 25 , 42 , 43 , 44 , 45 , 54 and 11 studies involved adults only. 15 , 52 , 53 …”

“… 14 , 26 Both types of haemophilia were included in 25 studies. 21 , 23 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 52 , 53 , 54 …”