Small cuts usually aren't much of a problem. Sek J, Authors also report data on treatment credibility rated by participants in the first session only, after they were presented with the therapeutic rationale. Morris J. We used the standard risk of bias assessment tool incorporated in the RevMan software (RevMan 2014). [Quality of life of young patients with haemophilia in Europe]. White M, 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. A third trial differs from the previous ones because the DVD intervention targets only the motivational aspects that precede the pain‐coping strategies and does not provide instruction for self‐management skills or techniques (Elander 2011). Gringeri A, Leebeek FW. Accessibility prophylaxis) has made the use of these techniques for reducing bleedings less relevant, at least in countries with high‐income countries, while there is no trial conducted in low‐to‐middle‐income countries that verifies the effectiveness of the relaxation techniques in those socio‐cultural contexts. (, 30% of attrition: 3 from the experimental group plus 3 from the control group dropped out. Psycho‐education intervention are usually targeting one or more of the following. 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. Jones, D. N., & Curtis, S. R. (2017). Unpublished work is identified by searching the abstract books of major conferences: the European Haematology Association conference; the American Society of Hematology conference; the British Society for Haematology Annual Scientific Meeting; the Congress of the World Federation of Hemophilia; the European Association for Haemophilia and Allied Disorders, the American Society of Gene and Cell Therapy and the International Society on Thrombosis and Haemostasis. et al. Psychological interventions are often claimed to be important in order to minimise the impact of hemophilia and its affect on the quality of life of individuals living with the condition. By accepting all cookies, you agree to our use of cookies to deliver and maintain our services and site, improve the quality of Reddit, personalize Reddit content and advertising, and measure the effectiveness of advertising. Knowledge structures in close relationships: A social psychological approach, 325-344. (Log in options will check for institutional or personal access. Individual, group or family group therapy interventions are eligible for inclusion. Comparison 1 DVD plus information booklet compared to information booklet alone, Outcome 5 Adherence: use of intervention at least once. Williams R. Groupbased training for self‐management strategies in people with type 2 diabetes mellitus. Individuals who engage in costly commitment signals are more oriented toward a long-term relationship with their partner. One trial (108 participants) showed coping strategies may lower pre‐contemplation scores and negative thoughts, mean difference (MD) ‐0.24 (95%CI ‐0.48 ‐ 0.00, low‐certainty evidence), however, other measures of coping strategies in the same trial suggest little or no difference between groups, e.g. Further analyses evaluated the impact of the DVD among participants with different levels of education to assess the extent to which receiving the DVD improves QoL, specifically for those with less education. Data at six months showed no significant difference between treatment groups in terms of contemplation, MD ‐0.09 (95% CI ‐0.32 to 0.14) (P = 0.45) (low‐certainty evidence) (Analysis 1.1). A further secondary outcome of physical health was assessed by: a reduction of bleedings and of emergency department visits (number of bleeds per week during baseline, intervention and follow‐up were counted and the units of factor replacement used per week were recorded); and by pain intensity (during treatment and follow‐up participants rated the highest degree of arthritic pain and bleeding pain experienced in each episode on a separate 5‐point scales (0 = no pain, 5 = pain present, could not be ignored, bed rest required), adapted from Budzynski (Budzynski 1973)). Randomized controlled trials (RCTs) and quasi‐RCTs. Jamison RN, Marchesini E, "corePageComponentUseShareaholicInsteadOfAddThis": true, The instruction given to fill in the self‐efficacy scale introduces a social desirability bias in the responses as it openly states that "Chronic haemophilia patients treating themselves at home score high in this, as far as specialised literature reports. Has data issue: false Shaw EJ, Gibson PG, Among women, emophilia predicts younger age of first marriage engagement. During this waiting period, the control group received the standard comprehensive care of the home therapy regimen, including regular physician visits or social work assistance as needed, but they did not receive any group instruction." The program is based on the instruction book in home treatment for patients with haemophilia, developed by the Dutch Society for Haemophilia Nurses. Bookshelf et al. Do psychological interventions improve the quality of life in people with hemophilia? This review targets all psychological interventions which have the objective to promote emotional, intellectual and spiritual wellness. Monninkhof EM, Weyand AC, et al. Newer therapies that don't contain clotting factors also are being used. The evidence presented for this outcome was of very low certainty. Maintenance of safer sexual behaviours: evaluation of a theory‐based intervention for HIV seropositive men with haemophilia and their female partners, The use of a psychological intervention to increase adherence during factor administration in a child with haemophilia, Behavioral assessment and management of adherence to factor replacement therapy in hemophilia. Evidence was retrieved on four interventions: psycho-education (DVD plus information booklet versus information booklet alone; computerised learning versus no intervention); cognitive therapy (auto-hypnosis (self-hypnosis) versus control); and behavioural therapy (relaxation (progressive or self control) versus no treatment). Blanchette VS, Sigouin C, Disclaimer. | Torres‐Ortuno A, Bare minimum Mondays, as a philosophy, suggests coping with stress by prioritizing the self. We found no trials assessing psychodynamic therapy or systemic therapy. For example, to work on these issues a group situation is frequently used as a therapeutic tool (e.g. Pain willingness (recognition that avoidance and control are often unworkable methods of adapting to chronic pain). Psychology Today © 2023 Sussex Publishers, LLC. Absence of active coping strategies, understanding the concept of coping as those cognitive and behavioral efforts made by the individual in order to manage internal and external demands generated by their chronic pain condition and that involve a challenge to their potential individual resources, patients with severe cognitive deficits with which it is not possible a cognitive psychological intervention, the inability to attend physiotherapy sessions for 12 consecutive weeks (7 supervised and 31 self‐monitored), surgical procedures performed 6 weeks prior or during the intervention protocol, not acceptance or withdrawal of informed consent. Torchet MF, Dalhquist L, Parallel assignment. If we dive in, and then dive out, again and again, we may begin to have an unstable sense of who we are. Breakey VR, Slifer KJ, 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 . Before Rational regulation of the activity level: cognitive therapy (management of irrational believes about pain) and organisation of time and reinforcement activities. The Coagulopathies Trials Register is compiled from electronic searches of the Cochrane Central Register of Controlled Trials (CENTRAL) (updated each new issue of the Cochrane Library) and weekly searches of MEDLINE and the prospective handsearching of one journal ‐ Haemophilia. Ignas DM, Mauser‐Bunschoten EP. Signs and symptoms include: Seek emergency care if you or your child has: When a person bleeds, the body typically pools blood cells together to form a clot to stop the bleeding. Know when your hopes are well-founded and how to turn your deep desires into results. Rowell JA, Facebook image: wavebreakmedia/Shutterstock. This has been a significant legacy, physically and psychologically, of earlier generation plasma‐derived factor concentrate treatments. Managing hemophilia is challenging both in terms of medical treatment and its broad impact on many aspects of the individual's life, including self‐perception. 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). frequency of bleeding (physical health) and adherence to the intervention. Data at six months showed significantly lower scores in pre‐contemplation for those who received the booklet plus the DVD compared to those who only received the booklet, MD ‐0.24 (95% CI ‐0.48 to 0.00) (P = 0.05) (low‐certainty evidence) (Analysis 1.1). belief of pain are thoughts that the individual believes to be correct and legitimate. We aimed to identify trials from the Cochrane Cystic Fibrosis and Genetic Disorders Group's Coagulopathies Trials Register, Embase and PsycINFO, CINAHL, MEDLINE and trial registries. Free app on google play store entitled 'Raj Persaud in conversation'. Two review authors (LP and FC or GM) independently assessed trial eligibility using a standardized form. Moreover, 2 from the experimental group plus 1 from the control group developed inhibitors and were excluded from the assessment of factor usage, Pre‐ and post‐ analyses performed on a single group, The intervention is not of a psychological nature, Intervention targeted are nurses and not people with hemophilia, Intervention targeted only mothers of children with hemophilia not people with hemophilia, The intervention is not of psychological nature, RCT on chronic illness where the only 2 people with hamophilia were in the same group, the intervention is purely of a physiotherapeutic nature, therefore It doesn't match the inclusion criteria, the intervention is not of psychological nature, as it is based on the use of computer instead of paper diaries; therefore It doesn't match the inclusion criteria, A descriptive paper about psychosocial aspects of hemophilia. doi: 10.1002/14651858.CD007568.pub2. Jacoby A. Self‐management education for adults with epilepsy. Training techniques of psychological management of pain: diaphragmatic breathing and progressive muscle relaxation to control vicious circle pain‐tension‐pain. In the developed world it has been superseded by factor concentrates as a source of factor VIII and IX. Trying to understand other people is a complex and error-prone task. The trials lasted from one to six months. Caudill MA, The influence of romantic breakup on the self-concept. Individual, group or family group therapy interventions were eligible. Who am I without you? Comparison 1 DVD plus information booklet compared to information booklet alone, Outcome 1 Coping strategies ‐ Pain Stages of Change Questionnaire. Sanagouyemoharer GR. Therefore, up to 44 participants are assessed in this comparison. Ths I² measure describes the percentage of total variation across trials that are due to heterogeneity rather than by chance (Higgins 2003). Date of the most recent search of the Group's Coagulopathies Trials Register: 13 June 2019. All mean scores are provided, but some SDs are missing. 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. Likewise, data comparing self‐control relaxation to no treatment showed no significant difference in the change in the number of bleeds per week between the two groups, MD ‐0.32 (95% CI ‐1.20 to 0.56) (P = 0.48) (very low‐certainty evidence) (Analysis 5.1). We resolved any disagreements by discussion, or if unsuccessful, by asking a third author (AI or SN). Sanders MR, Safety and efficacy of manual and educational therapy in the treatment of hemophilic arthropathy of the elbow. [2] [3] This results in people bleeding for a longer time after an injury, easy bruising, and an . Everyone has two sex chromosomes, one from each parent. For the definitions of these gradings, please refer to the summary of findings tables (Table 1; Table 2; Table 3; Table 4). a. People with hemophilia can react by denying their condition and its manifestations and not adhering to treatment. For clarity in the tables, where outcomes were presented using different measures (e.g. 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). But some carriers can have bleeding symptoms if their clotting factors are moderately decreased. The Hemophilia Treatment Centre Twinning (HTC) Program Twins of the Year are Al Bashir Hospital in Amman, Jordan and the two HTCs in Ireland: the National . Emophilia might be that condition and is defined as the tendency to fall in love easily, fast, and often. 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. White M, c. Downgraded once due to imprecision: numerical results not reported for control group. Girolami A. Emophilia and other predictors of attraction to individuals with Dark Triad traits. Maybe emophiliacs end up having more sex because of their desire for emotional romantic novelty. A better functional status (as measured with objective instruments) and an improved QoL are expected as a result of the intervention. Such products may be produced from recombinant technology or derived from large pools of human plasma. Data at six months showed no significant difference between treatment groups in terms of active coping, MD ‐0.34 (95% CI ‐0.75 to 0.07) (P = 0.10) (Analysis 1.2). Camosso‐Stefinovic J, Young NL, Chapter 16: Special topics in statistics. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Patients with hemophilia develop inhibitors as alloantibodies, that is an antibody to a protein that is recognized as foreign. 2022 Dec 9;7(1):100008. doi: 10.1016/j.rpth.2022.100008. If you have a severe form of the condition, the main concern is bleeding inside your body, especially in your knees, ankles and elbows. Note you can select to save to either the @free.kindle.com or @kindle.com variations. We handsearched conference proceedings of the International Society for Thrombosis and Haemostasis from 1990 to 30 June 2017. Reddit and its partners use cookies and similar technologies to provide you with a better experience. Please enable it to take advantage of the complete set of features! Clinginess, apathy, promiscuity, and more. Three trials were conducted in the 1970s and 1980s using techniques of auto‐hypnosis or relaxation and, in accordance with the needs and therapeutic possibilities of the time, they focused on secondary outcomes, e.g. Ferretti M, Adler CS, If sufficient numbers (at least 10 trials) are available in the future, we plan to investigate any heterogeneity we identify using subgroup analysis of potential confounding factors: For future updates, if possible, we plan to undertake sensitivity analyses to assess the robustness of our review results by repeating the analysis with the following adjustments: Also as discussed above (Dealing with missing data), if we encountered missing data which could not be provided by original trial authors, we planned, if possible, to perform a sensitivity analysis with the best and worst case scenario methods to assess effect of the missing data. The blinding of personnel involved was judged unclear for five trials (Beheshtipoor 2015; Breakey 2014; Elander 2011; Mulders 2012; Swirsky‐Sacchetti 1986), while for two there was a high risk of bias (LaBaw 1975; Lichstein 1985). 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. Cryoprecipitates are rich in coagulation factors VIII, XIII, VWF, fibronectin and fibrinogen. Deakin TA, Seven trials were included (362 participants randomized, data from 264 participants available for analysis); six of parallel design and one a partial cross‐over design. et al. Where possible, we planned to group outcome data in the analyses as follows: short‐term (on treatment); medium‐term (end of treatment to three months); long‐term (over three months). 2023 Mar 29;3(3):CD013766. However, none of the trials stated whether outcome assessors were blinded, therefore, all of the trials may be at risk of detection bias. 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). doi: 10.1002/14651858.CD010806.pub2. Also, three of the trials excluded between 30% to 56% of randomized participants from analyses (due to loss to follow‐up and other reasons, see Risk of bias in included studies), introducing bias due to incomplete outcome data. Data at six months showed no significant difference between treatment groups in terms of pain willingness, MD 2.34 (95% CI ‐1.22 to 5.90) (P = 0.20) (Analysis 1.3). Comparison 2 Computerised learning compared to no intervention, Outcome 3 Coping strategies: self‐management ability and transition readiness (change from baseline). Mood or personal well-being were not reported. Articles pertaining to the HIV epidemic were excluded from the analysis, as were those published before 1997. Inclusion in an NLM database does not imply endorsement of, or agreement with, Relaxation (progressive or self control) compared to no treatment. Psychology Today © 2023 Sussex Publishers, LLC. Psychopathy is associated with impulsiveness, erratic behavior, and a tendency to break rules, because psychopaths don’t feel for others. 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). Physical limitations or impairment are not always correlated with a poor mental health quality (Stieltjes 2009) showing how important adaptive coping strategies are in coping with living with hemophilia issues. Hemophilia A and B: Routine management including prophylaxis.

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