These studies have been abandoned, most likely because of the introduction of new effective drug therapies, which therefore made the use of psychological interventions aimed at improving the physical health of individuals obsolete. Comparison 1 DVD plus information booklet compared to information booklet alone, Outcome 6 Physical health: pain intensity (VAS, 6‐month post treatment scores). Psychosocial factors have a significant impact on quality of life for patients with chronic diseases such as haemophilia. It should be noted, however, that the method adopted in Mulders' trial is distorted by a bias in the questionnaire presentation, which implicitly induces all the respondents ‐ even those randomly assigned to the control group ‐ to place themselves on the high scores of the self‐efficacy scale due to social desirability. This fact can lead to a denial of the bleeding disorder, which is a commonly used mechanism, particularly in adolescence, and to non‐adherence (, Where treatment is unavailable, acute and chronic pain and arthropathy become an experience from childhood onwards. Prophylaxis is either primary or secondary. If you have a severe form of the condition, the main concern is bleeding inside your body, especially in your knees, ankles and elbows. 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. https://www.nhlbi.nih.gov/health-topics/bleeding-disorders. Patients with hemophilia develop inhibitors as alloantibodies, that is an antibody to a protein that is recognized as foreign. Natale P, Palmer SC, Ruospo M, Saglimbene VM, Rabindranath KS, Strippoli GF. Many factors prompt people to talk across others. Emophilia and other predictors of attraction to individuals with Dark Triad traits Jacqueline Lechuga, Daniel N. Jones Personality and Individual Differences. Participant recruitment was through the membership and registration list of the Haemophilia Society UK. Blood components that help clot blood. Federal government websites often end in .gov or .mil. (, 30% of attrition: 3 from the experimental group plus 3 from the control group dropped out. Centers for Disease Control and Prevention. Iorio A, Lambert T, Children themselves can receive support through play therapy. Lies grow bigger the longer the truth is hidden, leading to greater consequences once revealed. Accessed June 10, 2021. Bagheri S, This solid remaining protein is re‐dissolved by warming to give a small volume of cryoprecipitate solution which can be used to treat hemophilia A. If we detect asymmetry, we will explore causes other than publication bias. One trial, recruiting seven participants, compared relaxation (progressive or self control) to no treatment (Lichstein 1985). The benefits of emotional vulnerability are many, but what if you don't have many standards before giving away your heart? These bleeds can be very painful, and repeated episodes lead to weakening and crippling of joints. The majority of the seven trials, which also are the most recent ones, propose psycho‐educational interventions (Beheshtipoor 2015; Breakey 2014; Elander 2011; Mulders 2012), while the remaining three (and older) trials are about cognitive interventions (LaBaw 1975; Swirsky‐Sacchetti 1986) and behavioral interventions (Lichstein 1985). https://www.cdc.gov/ncbddd/hemophilia/facts.html. Cuesta‐Barriuso R, What is hemophilia? Bullinger M, Gringeri A, von Mackensen S. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. The authors state that "graphical data on factor replacement closely parallel those on bleeding frequency and are therefore not included". This psychological necessity for attachment security is a characteristic of anxious attachment. Disclaimer. Epub 2019 May 21. When we identified multiple publications on the same trial we listed all these references together under one study identifier and used all available data. We found no trials assessing psychodynamic therapy or systemic therapy. Cochrane Database Syst Rev. 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). Yoo KY. Effect of a self‐help program for mothers of hemophilic children in Korea. The interventions we wish to explore are usually targeting: QoL; early understanding of the chronic condition (awareness and knowledge); adherence or compliance to treatment (on‐demand or prophylaxis); inclusion in social life; and pain management (chronic or acute). Kutsumi M, Downgraded once due to risk of bias: both studies not blinded, some methodological information relating to randomization and allocation concealment unclear, incomplete outcome data in one study (only 70% of randomized participants analysed) Raj Persaud, M.D. Factor VIII and IXconcentrates produced using recombinant DNA technology. Comparison 2 Computerised learning compared to no intervention, Outcome 2 Coping strategies: disease‐specific knowledge. Study 1 - ideal profiles. This project was supported by the National Institute for Health Research, via Cochrane Infrastructure funding to the Cochrane Cystic Fibrosis and Genetic Disorders Group. Wakefield CE, A Progress Report on the WEIRDness of Psychological Samples, Find counselling to strengthen relationships, What Your Sexual History Might Tell a New Partner, Why More People Are Looking for Love Farther From Home, Why "Bare-Minimum Mondays" Can Hurt a Relationship, Why So Many Struggle to Find and Keep a Partner, 3 Surprising Ways to Help Stoic Men Open Up, Why Some People Keep Pushing Their Partner's Buttons, Reconnecting With Your Disconnected Adult Child, 5 Signs You’re Being ‘Quiet Dumped’ By Your Partner, Don’t Believe These Five Myths About Consensual Non-Monogamy, When “Therapy-Speak” Creeps Into Our Relationships, 4 Things That Make a Kiss Amazing—or Horrible. For included trials, we extracted data and entered them into RevMan (RevMan 2014). Date of the most recent search of the Group's Coagulopathies Trials Register: 13 June 2019. Sherman EM, et al. Comparative analysis of oral health and treatment necessities in hemophilia individuals of Davangere population - A case control study. Altman DG. If we had encountered missing data which could not be retrieved by asking the trial authors, we planned, if possible, to perform a sensitivity analysis with the best and worst case scenario methods to assess the effect of the missing data. Based on our results, one can reaffirm the general principle that knowledge gained from an educational intervention is unlikely to be translated into changes in behavior if participants are not engaged for a sufficient amount of time through active learning techniques (Nation 2003; Savage 2014; Small 2009). The https:// ensures that you are connecting to the The latest study entitled ‘Emophilia and other predictors of attraction to individuals with Dark Triad traits,’ found that emophilia as an aspect of your personality, was the best predictor of attraction to individuals who score high in ‘Dark Triad’ character traits. 2008 Sep;14(5):1014-22. doi: 10.1111/j.1365-2516.2008.01803.x. Connect with others like you for support and answers to your questions in the Blood Cancers & Disorders support group on Mayo Clinic Connect, a patient community. Most women with the defective gene are carriers who have no signs or symptoms of hemophilia. Kinesiophobia. Method of measurement: chronic pain acceptance questionnaire. Allocation concealment was judged to be low in three trials (Elander 2011; Mulders 2012; Swirsky‐Sacchetti 1986) and unclear in the remaining four trials (Beheshtipoor 2015; Breakey 2014; LaBaw 1975; Lichstein 1985). and Peter Bruggen, M.D. Emophiliacs fall in love with multiple people at once and are comfortable forming quick romantic bonds. In this research‐project some questions to verify this claim." However, across the total 30 months (the first, second and third 10‐month periods), there was significant decrease in number of bags of blood used in the treatment group compared to the control group, MD ‐74.17 bags (95% CI ‐141.14 to ‐7.19) (P = 0.03) (Analysis 3.1). This latest research predicts that whenever a friend of yours starts dating someone who is clearly displaying all the signs they suffer from the Dark Triad in spades, then you can predict your friend is very likely to suffer from emophilia. Davis K, The evidence we found was limited, however, there are a few findings that are relevant to clinical practice. Results presented below apply only to the first 2 months of the trial, prior to cross‐over, Allocation method is not mentioned by the authors, Randomized controlled intervention trial with a pre‐test/post‐test design, Individuals on home treatment were recruited from the Haemophilia Treatment Center at the Erasmus University Medical Center, Rotterdam, The Netherlands, "The e‐learning program, a didactic instrument with a central role for information and interaction via Internet technology, has been chosen as an intervention. Carruthers J, Note that the correlations of EP with sociosexuality, anxious attachment, and avoidant attachment are consistent with results found in previous studies (Jones, 2015).In addition, we explored sex differences among our key predictors. Peate M, Pasi J, Wee E, McWhirter WR. Kanjani V, Annigeri RG, Hanagavadi S, Manjunath MR. J Family Med Prim Care. Hashemi F, Allscripts EPSi. belief of pain are thoughts that the individual believes to be correct and legitimate. Inoue Y, Randomized controlled trials (RCTs) and quasi‐RCTs. Jeong Y, Ellard DR, After the 6‐month follow‐up, the DVD was sent to all those who previously received only the booklet." The trial had a partial cross‐over design; after two months of treatment, all participants crossed over onto the most effective treatment (self‐control relaxation) and continued to be followed up. Breakey VR, Emophilia describes the tendency to easily fall in love, a tendency that used to be captured by the term "emotional promiscuity." Most studies were questionnaire based, with almost no overlap in terms of the instruments used. In: Higgins JP, Green S, editor(s). Elfrink E, Psychosocial factors have a significant impact on quality of life for patients with chronic diseases such as haemophilia. Comparing baseline, treatment, and follow‐up periods for the variables daily tension, arthritic pain and bleeding pain, the authors couldn't "discern any pattern of progressive or self‐control relaxation influence these ratings" (Lichstein 1985, p. 159). 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). Bauman A, The research also suggests that male and female Emophiliacs are different. The seven included trials were published in peer‐reviewed journals (Beheshtipoor 2015; Breakey 2014; Elander 2011; LaBaw 1975; Lichstein 1985; Mulders 2012; Swirsky‐Sacchetti 1986). Food Insecurity Makes Disordered Eating More Likely, How Narcissists, Psychopaths, and Machiavellians Break Up, Disclosing the Obvious: Explaining Facial Differences. We also searched the following databases and trial registries (Appendix 2): We checked the bibliographies of included trials and any relevant systematic reviews, reports and dissertations identified for further references to relevant trials. White M, Higgins JP, Does Your Partner Have Too Much Power Over You? Search methods: An online random number generator was used for the randomization. different phases of life: at diagnosis; during childhood, when learning self‐infusion phase; at port‐a‐cath placement; after contracting or starting treatment for HCV or HIV (or both); at attainment of specific education levels. Kumpfer KL, Indeed, the interventions based on the auto‐hypnosis (self‐hypnosis) (LaBaw 1975; Swirsky‐Sacchetti 1986) and similar relaxation techniques (Lichstein 1985) were conducted in the 1970s and 1980s and showed promising results in reducing the burden of bleeding. It could also mean that you suffer from a kind of love dysfunction. Two trials (47 participants) reported coping strategies; one only reported within-group differences from baseline, the second showed an increase from baseline in coping strategies in the Internet program group compared to the no intervention group (disease-specific knowledge, MD 2.45 (95% CI 0.89 to 4.01); self-management ability and transition readiness, MD 19.90 (95% CI 3.61 to 36.19; low-certainty evidence). Clarke M, Some people approach love with reserve, thinking and feeling their way closer to a new potential partner. Data at six months showed no significant difference between treatment groups in terms of action or maintenance, MD 0.04 (95% CI ‐0.18 to 0.26) (P = 0.72) (Analysis 1.1). I am also a member of the psychosocial committee of the World Federation of Hemophilia (WFH) and a volunteer for workshops on psycho‐education in hemophilia. Comparison 2 Computerised learning compared to no intervention, Outcome 4 Health‐related QoL ‐ CHOK‐LAT (post‐program score). Plasma donations used for such products are screened for contaminating viruses such as HIV, Hepatitis B and C before use and then either heat treated, pasteurized or solvent –detergent treated to further eliminate any residual virus and protect against viral transmission. By reconciling, you relieve the agony of withdrawal, at least temporarily. Measurement of medical self‐management and transition readiness among Canadian adolescents with special health care needs, International Journal of Child and Adolescent Health, Psychologicalinterventions for children with asthma, Psychological interventions for adults with asthma. Rich L, Shirazi M, Couples can make small changes in their day-to-day interactions to improve communication. Sudden weakness or clumsiness. Where protocols were not available, we compared the 'Methods' and the 'Results' sections of the published papers. The .gov means it’s official. Emophilia predicts higher divorce rates in women, but not men, suggesting that falling in love easily may be an important risk factor for marriage breakdown among women, but not men. Evaluation of the impact of information about treatment‐related risks in patients receiving blood‐derived or recombinant medications, Manual Therapy in Haemophilic Arthropathy of the Knee (ARTHROPA), https://clinicaltrials.gov/ct2/show/NCT02198014, https://clinicaltrials.gov/show/NCT02825706, DDAVP vs. 2021 Aug 21;15:1817-1825. doi: 10.2147/PPA.S326434. Two trials (47 participants) reported coping strategies; one only reported within‐group differences from baseline, the second showed an increase from baseline in coping strategies in the Internet program group compared to the no intervention group (disease‐specific knowledge, MD 2.45 (95% CI 0.89 to 4.01); self‐management ability and transition readiness, MD 19.90 (95% CI 3.61 to 36.19; low‐certainty evidence). low self‐esteem, misunderstandings), Inform and re‐frame inappropriate thoughts or beliefs, Uses imagery visualization with hypnosis or self‐hypnosis, Activity monitoring, re‐organizing behaviours, Relaxation therapy, visualization and biofeedback, Communication skills training through flashcards, teach back, Deal with the individual emotional, cognitive, physical development since childhood, Investigate ways of thinking through the expression of dreams, fantasies, active imagination, Re‐signify traumatic and or painful experiences by having new insights into them, Learning new approaches to cope with problems between members of the family, The psychological frame can vary from psychodynamic, behavioural or interactional therapy, Mood and personal well‐being: any measure with adequate psychometric properties that identifies psychiatric symptomatology, emotional or behavioural difficulties in child or adult (e.g. Wieloch A, Only one trial (seven participants) from 1985, was included which focused on 'physical health' and did not report on any of our primary outcomes. Breakey VR, NGS: Numerical Grading Scale Ounnoughène N, We strongly suggest that researchers in the field consider developing a core outcome set to streamline future research. The difference between groups was reported to be significant in the original trial report (P < 0.05 of Mann Whitney U test) (low‐certainty evidence) (Swirsky‐Sacchetti 1986). The control Ss received a letter explaining that, for purposes of scientific research, they would receive the same training as the treatment group after the initial follow‐up period. It is a titanium reservoir unit connected to a catheter tube which is tunnelled under the skin and surgically inserted into a vein. Emiliani F, 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). Budzynski TH, Nieto‐Munuera J. Hemophilia occurs more commonly in males than in females. Psychologist Daniel Jones based at the University of Nevada Reno, a pioneer in the study of emophilia, argues this is a uniquely different explanation for why some people end up in a larger number of romantic entanglements. Waria A, Acquired hemophilia is a variety of the condition that occurs when a person's immune system attacks clotting factor 8 or 9 in the blood. Many trials referring to cognitive, behavioral and psycho‐educational interventions assess changes for the secondary outcome of physical health in terms of pain reduction (Elander 2011; Lichstein 1985) or bleedings (measured by different strategies) (LaBaw 1975; Lichstein 1985; Swirsky‐Sacchetti 1986). The report presents results from a series of questionnaires in terms of the baseline measurement and measurements after six months of treatment. Dehghani M. The effects of an exercise therapy program on joint range of motion, aerobic fitness, and anxiety of hemophilia A patients. {"type":"clinical-trial","attrs":{"text":"NCT02198014","term_id":"NCT02198014"}}, {"type":"clinical-trial","attrs":{"text":"NCT02825706","term_id":"NCT02825706"}}, {"type":"clinical-trial","attrs":{"text":"NCT03136003","term_id":"NCT03136003"}}, {"type":"clinical-trial","attrs":{"text":"NCT03529474","term_id":"NCT03529474"}}, 1 Coping strategies ‐ Pain Stages of Change Questionnaire, 2 Coping strategies ‐ Haemophilia Pain Coping Questionnaire, 3 Coping strategies ‐ Chronic Pain Acceptance Questionnaires, 5 Adherence: use of intervention at least once, 6 Physical health: pain intensity (VAS, 6‐month post treatment scores), 1 Mood and personal well‐being: self‐efficacy according to GSE‐S 12 scale (change from baseline), 2 Coping strategies: disease‐specific knowledge, 3 Coping strategies: self‐management ability and transition readiness (change from baseline), 4 Health‐related QoL ‐ CHOK‐LAT (post‐program score), 1 Physical health ‐ change from baseline in number of bags of blood used (90 AHF units), 1 Physical health ‐ reduction in the number of bleeds per week. "corePageComponentUseShareaholicInsteadOfAddThis": true, The evidence we retrieved with regard to cognitive interventions is limited (LaBaw 1975; Swirsky‐Sacchetti 1986). Duff A, Only one study combined questionnaire techniques with qualitative methods. Paugy P, Such trials are homogeneous with regard to the socio‐cultural context where they were carried out, as almost all of them were conducted in high‐income countries (three in the USA, one in Canada, one in the UK and one in the Netherlands). Haemophilia. 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). The development towards a functional and productive adult personality including undertaking studies and maintaining both employment and relationships can become issues (, Parents and relatives, due to the highly demanding situation and the complexity of the relationships in the setting of a genetically transmitted disease, may have their own issues that contribute to making life easier or more difficult for the individual with the disorder (, Feelings of anxiety, sadness and depression traducing in mental health disorders are reported in people with hemophilia, but will vary in their influence in the individual's quality of life (QoL) depending on cultural backgrounds, religious beliefs, family support and others variables (. We strongly recommend that researchers in the field consider developing a core outcome set to streamline future research (Kirkham 2017). Blanchette VS, To our knowledge, this is the first study to include a variety of relationship variables, including emophilia, as predictors of attraction to all constructs of the Dark Triad. Huszti HC, Comparison 1 DVD plus information booklet compared to information booklet alone, Outcome 5 Adherence: use of intervention at least once. The attempts to contact the trial author to clarify this point were unsuccessful. Three trials, recruiting a total of 109 participants, compared computerised learning (an e‐learning program (Mulders 2012), computerised educational games (Beheshtipoor 2015) and an Internet‐based self‐management and transitional care program (Breakey 2014)) to no intervention. Generic instruments such as SF‐36 or EQ‐5D can be used, or hemophilia specific ones. One trial, recruiting seven participants, compared relaxation (progressive or self‐control) to no treatment (Lichstein 1985). Psychological interventions to help coping with these psychosocial issues are often claimed to be helpful by several hemophilia healthcare professionals and patient organizations in many countries. Treatment. Accessed June 10, 2021. Marcucci M, Time point: immediately and 1 month after the intervention. et al. Lechuga, J., & Jones, D. N. (2021). This content does not have an Arabic version. In this review, hypnosis was considered as a cognitive intervention. In the Elander trial two primary and one secondary outcomes relevant to this review were assessed (Elander 2011). Having said that, those who score high in emophilia also tend to have more unprotected sex, but maybe the pathway by which they end up here is different compared with those who are just after the physical encounter. Comparison 2 Computerised learning compared to no intervention, Outcome 3 Coping strategies: self‐management ability and transition readiness (change from baseline). Different approaches have been undertaken with questionnaires to assess this outcome. 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. Bertocchi S, People who have severe hemophilia have spontaneous bleeding into the joints and muscles. Data at six months showed significantly lower scores in negative thoughts for those who received the booklet plus DVD compared to those who only received the booklet, MD ‐0.69 (95% CI ‐1.16 to ‐0.22) (P = 0.004) (Analysis 1.2). Bryant RA, Method of measurement: Lazarus Questionnaire, Randomized, not blinded, parallel design. The four newer trials assessed psycho‐educational interventions all mediated by the use of technologies (DVD or computer) and often created according to age needs of the target group. Downgraded twice due to serious imprecision: no specific numerical results reported and results not reported for the control group, a. Further information about program satisfaction can be found in the Breakey paper (Breakey 2014). Therefore, results of this trial cannot be included in the analyses and the results within the intervention group are reported narratively (Beheshtipoor 2015). For future updates, if we identify substantial or considerable heterogeneity (as defined above), we intend to explore potential causes of heterogeneity and to use a random‐effects model. Repeated vomiting. No trials referred to this type of intervention. This replacement therapy can be given to treat a bleeding episode in progress. An official website of the United States government. Caudill MA, This rarely happens, but it's one of the most serious complications that can occur. 4.1. Posted February 15, 2021 We suggest continuing along this direction. The same trial measured QoL and showed little or no difference between treatment groups for the physical domain, MD 0.59 (95% CI ‐3.66 to 4.84, low‐certainty evidence), but may improve scores in the mental health domain for those receiving the booklet plus DVD compared to booklet alone, MD (4.70, 95% CI 0.33 to 9.07, low‐certainty evidence). Emophilia might be that condition and is defined as the tendency to fall in love easily, fast, and often. Imahuku K, Personality and Individual Differences, 106, 325-328. AHF: antihemophilic factor Bagheri S, People with hemophilia of any age or gender, type A or B, any severity (severe, moderate, mild), with or without inhibitors. Gringeri A, chronic pain defined as persistent pain lasting at least six months and resistant to conventional medical therapy. Unauthorized use of these marks is strictly prohibited. The trial had a partial cross‐over design; after two months of treatment, all participants crossed over onto the most effective treatment (self‐control relaxation) and continued to be followed up. Fitzgerald T, Latter J, In particular, one included children between eight and 12 years old (Beheshtipoor 2015), while the second included adolescents between 12 and 18 years of age (Breakey 2014). Hope is double-edged, false hope can set you on a collision course with despair. Many self-sabotaging cycles are trauma responses and patterns learned earlier in life as self-preservation. Several psychosocial issues are potentially relevant in the clinical management of . measures of coping or physical health). For instance, all the 12 adolescents (100%) completed all eight learning modules and logged in for an average of 50 min each week (range = 25 to 120 min). Due to the heterogeneity of design, intervention, control and trial‐defined definitions of broad outcomes of interest to review, it was not possible or appropriate to include all trials in the meta‐analysis. QoL: quality of life The .gov means it’s official. Altman DG on behalf of the Cochrane Statistical Methods Group. Objectives: official website and that any information you provide is encrypted Spend every waking hour with a new romantic partner they just met, Feel like they're deeply in love with multiple people at the same time. None of these trials blinded participants or clinicians, since blinding would have been difficult or impossible due to the nature of the interventions. Comparison 6 Progressive relaxation compared to self‐control relaxation, Outcome 1 Physical health ‐ reduction in the number of bleeds per week. Comparison 2 Computerised learning compared to no intervention, Outcome 2 Coping strategies: disease‐specific knowledge. We aimed to provide a structured summary of the psychological interventions that have been tested in the field of hemophilia. All four psycho‐educational interventions were delivered through technologies (DVD and computer) and self‐administered. A comprehensive care team is multidisciplinary including hematologists, nurses, social workers, psychologists, physiotherapists, dentists, orthopedic surgeon and genetic counsellors. Unfortunately, this argument is not always explicitly discussed by the authors of the trials and therefore, from the available documentation, we can say that only two of the four interventions evaluated (Beheshtipoor 2015; Elander 2011) seem to have benefited from some contribution of psychologists in the definition of the intervention device.

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