Many people with hemophilia are affected by chronic arthritic joint pain as well as acute bleeding pain. In this cross-sectional study, 209 men with hemophilia A or B completed the Hemophilia Pain Coping Questionnaire (HPCQ), the Chronic Pain Acceptance Questionnaire (CPAQ), and the RAND 36-item Health Survey (SF-36), a measure of health-related quality of life. Multiple regression was used to test the influence of active pain coping, passive adherence coping, and negative thoughts about pain (HPCQ scales), and activity engagement and pain willingness (CPAQ scales), on physical and mental components of quality of life (SF-36 PCS and MCS scales), taking account of age, hemophilia severity, use of clotting factor, and pain intensity. Pain intensity was the main influence on physical quality of life and negative thoughts was the main influence on mental quality of life. Activity engagement and pain willingness had small but significant influences on physical and mental quality of life. Pain willingness also moderated and partly mediated the influence of pain intensity on physical quality of life, and activity engagement and pain willingness mediated the influence of negative thoughts on mental quality of life. Negative thoughts moderated and partly mediated the influence of pain intensity on mental quality of life. There was no evidence that active pain coping influenced quality of life. The findings suggest that quality of life in hemophilia could potentially be improved by interventions to increase pain acceptance and reduce negative thoughts about pain, especially among those with less severe pain

Initially high levels of passive coping may be an obstacle to improving mental quality of life. Acceptance rather than coping may be a more useful behavioural change target, but more research is needed about the meanings and therapeutic implications of different elements of pain acceptance.

A DVD (digital video disk) intervention to increase readiness to self-manage joint pain secondary to hemophilia was informed by a 2-phase, motivational-volitional model of readiness to self-manage pain, and featured the personal experiences of individuals with hemophilia. The DVD was evaluated in a randomized controlled trial in which 108 men with hemophilia completed measures of readiness to selfmanage pain (Pain Stages of Change Questionnaire) before and 6 months after receiving the DVD plus information booklet (n = 57) or just the booklet (n = 51). The effect of the DVD was assessed by comparing changes in Pain Stages of Change Questionnaire scores (precontemplation, contemplation, and action/maintenance) between groups. The impact on pain coping, pain acceptance, and health-related quality of life was tested in secondary analyses. Repeated-measures analysis of variance, including all those with complete baseline and follow-up data regardless of use of the intervention, showed a significant, medium-sized, group _ time effect on precontemplation, with reductions among the DVD group but not the booklet group. Significant use _ time effects showed that benefits in terms of contemplation and action/maintenance were restricted to those who used the interventions at least once. The results show that low-intensity interventions in DVD format can improve the motivational impact of written information, and could be used to help prepare people with chronic pain for more intensive self-management interventions. The findings are consistent with a 2-phase, motivational-volitional model of pain self-management, and provide the first insights to our knowledge of readiness to self-manage pain in haemophilia.

Pain coping strategies are important influences on outcomes among people with painful chronic conditions. The pain coping strategies questionnaire (CSQ) was previously adapted for sickle cell disease and haemophilia, but those versions have 80 items, and a briefer version with similar psychometric properties would facilitate research on pain coping. The full-length haemophiliaadapted CSQ, plus measures of pain frequency and intensity, pain acceptance (CPAQ), pain readiness to change (PSOCQ), and health-related quality of life (RAND-36) were completed by 190 men with haemophilia. Items were selected for a 27-item short form, which was completed six months later by 129 (68%) of the participants. Factor structure, reliability and concurrent validity were the same in the long and short forms. For the short form, internal reliabilities of the three composite scales were 0.86 for negative thoughts, 0.80 for active coping and 0.76 for passive adherence. Test-retest reliabilities were 0.73 for negative thoughts, 0.70 for active coping, and 0.64 for passive adherence. Negative thoughts were associated with less readiness to change, less acceptance of pain, and more impaired health-related quality of life, whereas active coping was associated with greater readiness to change and more acceptance of pain. The short form is a convenient brief measure of pain coping with good psychometric properties, and could be used to extend research on pain coping in haemophilia.

The responses received highlight a small number of areas where relatively simple and low-cost interventions might improve the health and welfare of women seafarers. Specifically these include the production and appropriate distribution of gender-specific information on back pain, mental health and nutrition in addition to gynaecological complaints, to all women seafarers; the introduction of means for disposing of sanitary waste for all female crew on all ships and the improved availability of female specific products e.g. sanitary products in port shops and welfare centres worldwide. Additional work is needed to investigate these areas more fully and to look at the issue of confidence in medically trained staff, medical confidentiality and sexual harassment. Any further work and interventions will require the support of all of the main stakeholders and we plan a briefing meeting to publicise the findings to date and to identify support for further work in this area.