Reliability, validity and evaluation of the Haemophilia Coping and Perception Test

Haemophilia is an X-linked bleeding disorder, caused by an inherited deficiency of clotting factor VIII (FVIII; haemophilia A) or FIX (haemophilia B) and leads to spontaneous and posttraumatic bleeds [1]. In the Netherlands, boys with severe haemophilia receive adequate prophylactic treatment to reduce the risk of irreversible joint damage and to increase the quality of life. However, boys may still endure difficulties and impairments, such as hospital visits, frequent injections and limited participation in (sport) activities [2]. Little is known about the knowledge, competencies, coping skills and perception children with haemophilia have to manage and cope with their disease. More insight into these concepts is important, because then it is possible to support patients, improve psycho-education and disease management, which can positively influence not only physical outcomes, but also psychosocial well-being, such as improvement of healthrelated quality of life (HRQOL) [3]. Coping is defined as ‘an emotional response to external negative or stressful events’ [4] and is an important factor in the acceptance of the disease and HRQOL in children with haemophilia [5]. Perception of disease is defined as ‘emotional and cognitive representations of illness’, including feelings of anxiety and worries about the illness [6]. To detect children with inadequate coping skills or non-realistic attitudes and anxiety, Colland & Fournier [7] developed and validated the Asthma Coping Test (ACT) for children with asthma aged 8–12 years. The test is unique because it is presented in board game form [7]. Recently, the ACT has been adapted by the Hemophilia Comprehensive Care Treatment Center in Amsterdam for boys with haemophilia and called the Haemophilia Coping and Perception Test (HCPT). By providing a tool to assess coping and perception in clinical practice, a contribution can be made to recognize what boys find difficult and to provide psychosocial support required for children with haemophilia [3]. Also, we know from research that board games are useful in counselling children [8]. The aims of this study are to assess reliability and construct validity of the HCPT, describe the coping and perception of boys with haemophilia and evaluate the usefulness of the HCPT. Therefore, all boys aged 8–12 years with haemophilia under treatment in one of six participating Dutch Hemophilia Treatment Centers were invited to participate in this study by a letter between July 2011 and January 2013 after approval by the ethics committee. All parents gave written informed consent. The paediatric psychologist (P.L.) visited all respondents at home. The HCPT was played one-on-one; parents could be present but not allowed to participate or intervene. Evaluation questionnaires were completed after the HCPT. Parents completed a socio-demographic questionnaire about themselves and their child. The HCPT takes approximately 45 min and has two sides – sports and pirates/treasures (Fig. 1). The boy chooses which side he prefers. Players roll the dice, advance the piece the corresponding number of squares on the board and read a corresponding card. The blue cards contain the true test items (32 items), which can be answered by the child only and consist of two scales; coping (e.g. ‘When you have a bleed, what are you supposed to do’?) and perception (e.g. ‘Do you ever feel different from your friends because you have hemophilia’?). The yellow cards (34 items) contain questions or assignments to amuse the players (e.g. ‘walk around the room like an elephant’). The red cards (34 items) contain questions to facilitate and promote conversations about more personal topics (e.g. ‘what do you do when you cannot sleep at night’?). The scale score of the coping items is calculated as the sum of the items. The coping scale has two versions; one for boys with moderate or mild haemophilia (coping) and one with four additional questions regarding prophylaxis for boys with severe haemophilia (coping-S). The higher the score, the better the reported coping skills. The scale score of perception items is calculated as the sum of the items. A lower score indicates realistic perception, with low anxiety. Questionnaires were mailed to respondents 1 week before the home visit. To assess construct validity of Correspondence: Lotte Haverman, PhD, Psychosocial Department, Emma Children’s Hospital, Academic Medical Center, A3-241, PO Box 22660, 1100 DD Amsterdam, The Netherlands. Tel.: +31 20 5665674; fax: +31 20 6091242; e-mail: l.haverman@amc.nl