official website and that any information you provide is encrypted Peters M, Finally, our results showing a possible effect of relaxation and self‐hypnosis techniques in reducing the frequency of bleeding (LaBaw 1975) are in line with other Cochrane Reviews that have highlighted that similar techniques can produce significant improvements on physical health outcomes in children and adults with asthma, such as asthma symptoms and lung function (Yorke 2005; Yorke 2006). This includes people higher on the set of personality traits captured by the dark triad: narcissism, Machiavellianism, and psychopathy (Lechuga & Jones, 2021). Chan AK. If different scales were used to measure the same outcome (such as for QoL), we tried to calculate and report the standardized mean difference (SMD) and their 95% CIs. Alfonso Iorio: I do not perceive any relevant conflict of interest for the above disclosures as far as the matter of this review is concerned. Readiness to adopt a self‐management approach to chronic pain: the Pain Stages of Change Questionnaire (PSOCQ), Clinical manifestations and therapy of the hemophilias, Hemostasis and Thrombosis: Basic Principles and Clinical practice. Data at six months showed no significant difference between treatment groups in terms of activity engagement, MD 3.50 (95% CI ‐0.27 to 7.27) (P = 0.07) (Analysis 1.3). Timepoint: before the intervention and 3 days after the end of the intervention. We judged there to be a low, unclear or high risk of bias for each of the domains listed above. An evaluation of cognitive‐behavioural techniques in the management of chronic arthritic pain in men with haemophilia. The two most common types of hemophilia are hemophilia A (also known as classic hemophilia) and hemophilia B (also . Sudden weakness or clumsiness. A DVD (digital video disk) plus booklet intervention to increase readiness to self‐manage joint pain secondary to hemophilia, Readiness to self‐manage pain, measured by the 4 scales of the PSOCQ, The authors stated: "A computer‐generated random sequence of 0s and 1s, with equal numbers of 0s and 1s within each block of 10, was used to allocate those enrolled to 1 of 2 mailings: the DVD plus booklet, or booklet only. They might strongly endorse such statements as, "I feel romantic connections right away," or "I tend to jump into relationships" (Jones, 2019). et al. One trial assessed changes in the self‐efficacy to perform home treatment using a non‐validated scale adapted by Lee (Lee 1994) (Mulders 2012). Neither trial reported on any of the following outcomes: hospital admissions, duration of hospitalisations and the presence of co‐morbidities or pain intensity (LaBaw 1975; Swirsky‐Sacchetti 1986). Caudill MA, Search methods: Karimi M. The effect of yoga on the quality of life in the children and adolescents with haemophilia, International Journal of Community Based Nursing and Midwifery. The most common are sex-linked recessive disorders, haemophilia A (classic haemophilia) and haemophilia B (Christmas disease), which are due to an isolated deficiency of the clotting activity of factor VIII or of factor IX, respectively. For these reasons, it was not possible to combine the trials nor to conduct a meta‐analysis, and as a consequence it is difficult to generalize the results. The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Lopez‐Pina JA. We included trials comparing people with hemophilia receiving any psychological intervention compared with other individuals receiving a different intervention or no intervention at all. The evidence we found was limited, however, there are a few findings that are relevant to clinical practice. Kumpfer KL, Breakey VR, The 57% of those who received the DVD and 66% of those who watched it at least once, rated it as helpful. Yoo KY. Effect of a self‐help program for mothers of hemophilic children in Korea. Authors also report that no correlation was found between hypnotizability of participants (measured by the Harvard Group Scale of Hypnotic Susceptibility) and treatment effect (very low‐certainty evidence). The primary purpose of this review is to assess the effectiveness of psychological therapies for improving the ability of people with hemophilia to cope with their chronic condition. Advertising revenue supports our not-for-profit mission. Nation M, Not all of the seven included trials analysed the effects of the interventions on our primary outcomes (mood and personal well‐being, coping strategies and QoL). One trial did not report this on this outcome (LaBaw 1975). Do you like being in love, or do you prefer falling in love? Comparison 2 Computerised learning compared to no intervention, Outcome 1 Mood and personal well‐being: self‐efficacy according to GSE‐S 12 scale (change from baseline). From a practical view point, however, since over 80% of the hemophilia population does not have access to treatment, these cognitive‐behavioral techniques, in their most current and advanced form, could be providing suboptimal care but still valuable relief from symptoms. The trial report presents pre‐program and post‐program scores, as well as within‐group P values for the change within the groups. All treatments were safe, no major side effects were reported. et al. We found seven trials with 362 people with hemophilia aged between 6 and 65 years of age. Published online by Cambridge University Press:  Paired sample t‐tests for the control group did not show significant changes. GSE‐S: Generalized Self‐Efficacy ‐ Sherer Scale Can We Compare Well-Being Across Species? 2018 Oct 13;10(10):CD012471. People who have hemophilia often have longer bleeding after an injury or surgery. Beheshitpoor and Mulders did not report this outcome (Beheshtipoor 2015; Mulders 2012). The LaBaw trial did not report on this outcome (LaBaw 1975). Elfrink EJ, Inclusion in an NLM database does not imply endorsement of, or agreement with, All rights reserved. Computerised learning compared to no intervention Two trials (57 participants) reported on interventions aimed at children and adolescents and their impact on promoting a sense of self-efficacy (primary outcome 'Mood and personal well-being'), but only one showed an increase, MD 7.46 (95%CI 3.21 to 11.71, 17 participants, very low-certainty evidence); the second did not report control group data. Haemophilia, or hemophilia [6] (from Ancient Greek αἷμα (haîma) 'blood', and φιλία (philía) 'love of'), [7] is a mostly inherited genetic disorder that impairs the body's ability to make blood clots, a process needed to stop bleeding. We suggest continuing along this direction. Furthermore authors noticed a trend suggesting that those participants with higher GSI in the pre‐test tended to profit more from treatment. Downgraded once due to risk of bias: study not blinded and incomplete outcome data (45% of randomized participants are not included in analyses) 2021 Aug 21;15:1817-1825. doi: 10.2147/PPA.S326434. All participants were included in the analysis in the LaBaw trial (LaBaw 1975) and 24 out of 30 randomized participants were included in the analysis in the Swirksy‐Sacchetti trial (Swirsky‐Sacchetti 1986). Sequence generation was judged to be low risk in five of the trials (Beheshtipoor 2015; Breakey 2014; Elander 2011; Mulders 2012; Swirsky‐Sacchetti 1986) and was judged as unclear for two trials (LaBaw 1975; Lichstein 1985). A better functional status (as measured with objective instruments) and an improved QoL are expected as a result of the intervention. Palareti L. Process of normalization in families with children affected by hemophilia, Depression, anxiety and suicidal behaviour in children and adolescents with hemophilia. Slotter, E. B., Gardner, W. L., & Finkel, E. J. Careers. hasContentIssue false, Aphasia recovery, treatment and psychosocial adjustment, Burn injuries: psychological and social aspects, Cancer: Hodgkin's and non-Hodgkin's lymphoma, Chronic obstructive pulmonary disease (COPD): chronic bronchitis and emphysema, Coronary heart disease: cardiac psychology, Domestic violence, intimate partner violence and wife battering, Fetal wellbeing: monitoring and assessment, Renal failure, dialysis and transplantation, Cambridge Handbook of Psychology, Health and Medicine, University College and Middlesex School of Medicine, United Medical and Dental Schools of Guy's and St Thomas's, St George's Hospital Medical School, University of London, https://doi.org/10.1017/CBO9780511543579.176, Get access to the full version of this content by using one of the access options below. What We Find Inside Us When Searching for Missing People. This is probably due to the fact that, by their very nature, these approaches are unlikely to lend themselves to experimental research designs to prove their effectiveness. Not all of the seven included trials analysed the effects of the interventions on our primary outcomes (mood and personal well-being, coping strategies and QoL). Effectiveness of two psychological interventions for pain management, emotional regulation and promotion of quality of life among adult Portuguese men with haemophilia ( PSY‐HaEMOPEQ): study protocol for a single‐centre prospective randomised controlled trial, The disability paradox: high quality of life against all odds. Jeong Y, Aron, A., & Aron, E. N. (1996). Of note, was that the improvement especially occurs in participants with lower education levels. Anxiety, sadness and depression resulting in mental health disorders are reported in this population and may influence quality of life (QoL) depending on cultural background, religious beliefs, family support and other variables. Manual and educational therapy in the treatment of hemophilic arthropathy of the elbow: a randomized pilot study. Psychological research has found scoring higher on emophilia predicts the number of previous romantic relationships, but is unique, as a measure of your personality, in also predicting the number of times you have been engaged to be married. One of the models of treatment for people with hemophilia where clotting factor concentrate are infused when bleeding occurs. There is no drug involved in this review, and the Hemophilia Expectations Resources and Opportunities Project (HERO) is a NovoNordisk funded project with an independent international advisory board aiming at investigating psychosocial aspects of hemophilia, and raising awareness on the topic. Raj Persaud, M.D. Latter J, The ability to cope with the bleeding disorder and taking into account the self‐perception of the individual are critical. sharing sensitive information, make sure you’re on a federal Crusto C, None of these trials blinded participants or clinicians, since blinding would have been difficult or impossible due to the nature of the interventions. Davis K, Interventions to support the psychosocial needs of patients and their families, such as offering information and assistance, clarifying doubts, and teaching coping strategies to minimize the impact of disabilities . People don’t necessarily interrupt because they are bored. Comparison 3 Auto‐hypnosis (self‐hypnosis) compared to usual care, Outcome 1 Physical health ‐ change from baseline in number of bags of blood used (90 AHF units). Dehghani M. The effects of an exercise therapy program on joint range of motion, aerobic fitness, and anxiety of hemophilia A patients. Does Your Partner Have Too Much Power Over You? Mulders G, Hemophilia. A localized swelling filled with blood (bruise) resulting from bleeding. Some results are reported only in the abstract, It is unclear whether more than 40 participants were eligible and it is unclear how the enrolment was managed. If your deficiency is severe, you can bleed easily for seemingly no reason. improvement from baseline) but no post‐treatment results were reported in control groups to allow a between‐group comparison. This has been a significant legacy, physically and psychologically, of earlier generation plasma‐derived factor concentrate treatments. Narayana SR, We note that results presented in this review are different from the results presented in the Breakey report (Breakey 2014). These interventions can include family members such as parents and siblings. Stinson J. Feasibility study of a randomized control trial to evaluate an internet‐based self‐management program for adolescents with hemophilia. Wee E, The authors present mean values, however we are concerned about the skewed distribution of the change values so we have presented values for the median and range. Individual participant data were presented graphically for the mean bleeding frequency per week, therefore, the change from baseline after two months (prior to cross‐over of treatments) was calculated and presented in the analyses (Analysis 4.1; Analysis 5.1; Analysis 6.1). 8600 Rockville Pike Social participation of patients with hemophilia in the Netherlands, Psychosocial impact of inhibitors on haemophilia patients' quality of life. Edraki M, Two review authors (LP, GM) independently performed data extraction using a standardized form. One trial (30 participants) showed the intervention did not improve self‐efficacy in adults, but appropriate data could not be extracted. Feasibility study of a randomized control trial to evaluate an internet‐based self‐management program for adolescents with hemophilia: preliminary results and observations, Journal of thrombosis and haemostasis : JTH. Gilchrist M. Information and self‐management needs of people living with bleeding disorders: a survey, An exploration of health‐related quality of life in adults with haemophilia‐‐a qualitative perspective, Parents of children with haemophilia – a transforming experience, Confirmatory factor analysis of the General Self‐Efficacy Scale. It should be noted that, nowadays, the distinction between cognitive interventions and behavioral interventions is no longer so clear‐cut, and from the critical re‐elaboration of these two models the Cognitive‐Behavioral Approach was born. The trial did not report on this outcome (Lichstein 1985). One trial reported QoL but with insufficient information to calculate changes from baseline; no difference in post‐treatment scores was seen between groups, MD ‐8.65, 95% CI ‐18.30 to 1.00, very low‐certainty evidence). only children, only adolescents or only adults), therefore, results for some comparisons and interventions may not be generalisable to wider populations. The effects of a comprehensive self‐hypnosis training program on the use of factor VIII in severe hemophilia, International Journal of Clinical and Experimental Hypnosis. Hemophilia A and B (Christmas Disease) are rare chronic and inherited blood clotting disorders (Lozier 2004; Rodgers 1999). Everyone has two sex chromosomes, one from each parent. For Alexia Pantoja it was only one in a series of adversities she overcame to walk across the stage at Commencement. High-conflict personalities and people with Cluster B personality disorders tend to be emotionally immature. Finally, narcissism is associated with believing you are too wonderful for your place in life and includes therefore a sense of entitlement, leadership seeking, and grandiosity. We searched reference lists of included publications. 8600 Rockville Pike Privacy Policy. This preventive approach aims to avoid: rejection of hemophilia; fear of reporting bleedings; and non‐compliance (Cassis 2007).

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