Patients' experience of haemorrhagic cystitis after Haematopoietic Stem Cell Transplantation: Findings from a phenomenological study.

PURPOSE: Haemorrhagic cystitis (HC) is a severe complication of haematopoietic stem cell transplantation (HSCT), which significantly affects patients' quality of life. However, no qualitative studies have described to date the experience of patients who have developed this complication. Therefore, the aim of this interpretative phenomenological study performed on 2019 was to explore the experience of patients who developed HC after HSCT. METHOD: A purposeful sample of nine patients who had experienced at least one episode of HC after the HSCT were approached. The audio-recorded interviews were transcribed verbatim and then analysed according to Giorgi's method. Member checking of the findings was also performed. RESULTS: The experience of the participants with HC after HSCT has been summarised around three main themes: "Being alerted", "It has arrived" and "It has been overcome." Patients reported to have been informed regarding the HC; after the first devastating symptoms, they reported fear and in searching for causes and strategies to alleviate the problem, which seemed to be never resolved. Patients' experience with HC is complex and experienced dramatically due to the pain and the discomforting consequences of the treatments received; they develop a sense of exhaustion that can further increase both their physical and emotional burden. The process of recovery from the huge impact, required time over the end of the HC symptoms. CONCLUSIONS: Patients' experience of HC is complex, and varies according to the various phases of the complication. HC creates an increased physical and psychological stresses that demand additional coping strategies: therefore, the emotional support of patients is crucial. Moreover, strategies used autonomously by patients to alleviate symptoms are at merit of consideration in future studies.

Influence of hematoma volume and age on cognitive functions and ADL after putaminal hemorrhage.

BACKGROUND AND OBJECTIVE: After cerebral hemorrhage, cognitive functions and activities of daily living (ADL) are affected by various factors, including hematoma volume and patient age. In the present study, we investigated the effect of age and hematoma volume on cognitive functions and on ADL. METHODS: The sample comprised 274 patients (183 men and 91 women; mean age 58.2 ± 12.5 years) with putaminal hemorrhage who were hospitalized in a convalescent rehabilitation ward. Hematoma volume was estimated from computed tomography imaging at stroke onset. Cognitive functions were evaluated using Raven's Colored Progressive Matrices test (RCPM) and the Mini-Mental State Examination (MMSE) at hospital admission, while ADL score was assessed at discharge using the Functional Independence Measure motor subscale (FIM-M). In the present study, we classified the patients into six groups according to whether they were non-elderly or elderly (cutoff age, 60 years) and whether their hematoma was small, medium, or large (cutoff volumes, 20 and 40 mL, respectively). Subsequently, the scores on the RCPM, MMSE, and FIM-M were compared among the groups. RESULTS: In both age groups, patients with a larger hematoma volume had lower RCPM and MMSE scores. Patients <60 years old exhibited different trends in their RCPM and MMSE scores, such that the RCPM score showed a step-wise decrease according to hematoma volume, while a difference in the MMSE score was only observed at the 20 mL boundary. Most of the younger patients (<60 years of age) attained high FIM-M scores at discharge, as long as their hematoma volume was either medium or small (<40 mL). This age group had higher RCPM scores on admission, which may have contributed to their higher FIM-M scores on discharge. CONCLUSIONS: In the present study, we demonstrated that advancing age increases the effect of hematoma volume on RCPM and MMSE scores and identified differences in the effects observed on these two scores. Thus, it may be important to use the RCPM alongside the MMSE for patient assessment.

Factors influencing patient's perception of long-term treatment with low-molecular-weight heparins for cancer-associated thrombosis: an updated analysis of TROPIQUE, a prospective observational study.

PURPOSE: Our objective was to compare patient's expectations to their experience and to identify factors predictive of patient's perception of long-term LMWH for the treatment of cancer-associated thrombosis (CAT). METHODS: Results from the validated Perception Anticoagulant Treatment Questionnaires (PACTQ) completed before inclusion (PACTQ1 for expectations) and at the end (PACTQ2 for convenience and satisfaction) of the 6-month TROPIQUE study were studied with principal component analysis. Possible predictive factors of improved perception of LMWH treatment were analyzed with the Kruskall-Wallis test. RESULTS: Among 409 included patients treated with LMWH, 269 PACT-Q1 and 139 PACT-Q2 were evaluable for treatment perception. Patients had high expectations (A1-A7 score of 26.7 ± 3.5, max = 35). Treatment cost (A7 = 1.90 ± 1.31) and concern about a mistake in anticoagulation (A5 = 1.93 ± 1.12) had little importance while LMWH treatment was considered easy to use (A4 = 4.20 ± 0.93). Six-month treatment with LMWH was associated with a high rate of convenience (B1-B11, C1-C2 = 55.1 ± 8.38, max = 65) and a high satisfaction score (D1-D7 = 25.1 ± 4.32, max = 35). Patients' confidence in treatment and perception of possible LMWH side effects were moderate while perception of autonomy and independence significantly improved at the end of the study compared to inclusion. PACT-Q2 satisfaction score was low in patients who experienced bleeding (PACT-Q2 24.1 ± 3.3 vs. 25.1 ± 4.3). LMWH twice daily tended to be found less convenient compared than once daily (53.3 ± 7.2 vs. 55.0 ± 8.3). CONCLUSION: CAT patients had a good perception of the 6-month LMWH treatment when comparing expectations and experience. Using a quantitative scale validated in the general population for VTE and subcutaneous injection and including a large number of patients, bleeding complications and LMWH twice daily were associated with a nonsignificant trend towards a worsen perception.

Experiences of patients with haemorrhoidal disease - a qualitative study / Experiências de pacientes com doença hemorroidária - estudo qualitativo

ABSTRACT Purpose: To obtain a better understanding of the patients' experiences with haemorrhoidal disease' impact on their daily life and results of treatment by performing a qualitative study. Method: Individually interviews were conducted among patients with haemorrhoidal disease between 2016 and 2017. Each interview was recorded using an audio recorder and transcribed verbatim. A semi-structured interview guide was used with pre-specified topics, based on a previous conducted literature review. Transcripts were coded and the analysis consisted highlighting passages in the text and assigning each passage a code representing the predefined themes from the interview guide. This resulted in a three-level theme hierarchy: overarching theme, mid-level sub-theme and issues. Results: Fifteen participants underwent individual interviews of whom thirteen were conducted by telephone. The mean age was 60.7 years (35-78); five of them were female (33.3%). Pain and blood loss were the most frequently reported symptoms. Participants indicated that these symptoms were directly associated with emotional burden, daily adjustments and social impact. Before diagnosis with haemorrhoidal disease blood loss resulted in feelings of fear and next in embarrassment during social activities. In daily life participants needed to get up early, used sanitary pads for blood loss and anal ice sticks to reduce pain. Participants were often not completely satisfied with the process and outcome of treatment. Conclusion: This first qualitative study provides detailed insight into the patients' experiences with haemorrhoidal disease, impact on daily life and results of treatment. This information may be used in daily practice to create awareness among clinicians.

RESUMO Objetivo: Este estudo qualitativo teve como objetivo propiciar uma melhor compreensão das experiências dos pacientes com doença hemorroidária, o impacto em sua vida diária e os resultados do tratamento. Métodos: Entre 2016 e 2017, pacientes com doença hemorroidária foram entrevistados individualmente. Cada entrevista foi gravada usando um gravador de áudio e transcrita na íntegra. Utilizou-se guia de entrevista semiestruturado, com tópicos pré-especificados baseados em uma revisão de literatura realizada anteriormente. As transcrições foram codificadas; a análise consistiu em destacar passagens no texto e atribuir a cada passagem um código representando os temas predefinidos no guia de entrevista. Isso resultou em uma hierarquia de temas de três níveis: tema abrangente, subtema de nível médio e problemas. Resultados: Quinze participantes foram submetidos a entrevistas individuais, das quais treze foram conduzidas por telefone. A média de idade foi de 60,7 anos (35-78); cinco deles eram do sexo feminino (33,3%). Dor e hemorragia foram os sintomas mais frequentemente relatados. Os participantes indicaram que esses sintomas estavam diretamente relacionados a sobrecarga emocional, ajustes nas atividades diárias e impacto social. Antes do diagnóstico de doença hemorroidária, a hemorragia levou a sentimentos de medo e de constrangimento durante as atividades sociais. No dia-a-dia, os participantes precisavam acordar cedo, usar absorventes higiênicos para perda de sangue e gelo na região anal para reduzir a dor. Geralmente, os participantes não estavam completamente satisfeitos com o processo e o resultado do tratamento. Conclusão: Este primeiro estudo qualitativo apresenta uma visão detalhada das experiências dos pacientes com doença hemorroidária, o impacto na vida diária e resultados do tratamento. Essas informações podem ser usadas na prática diária para conscientizar os médicos.

What Impact Does Venous Thromboembolism and Bleeding Have on Cancer Patients' Quality of Life?

BACKGROUND: Venous thromboembolism (VTE) is common in cancer patients and its treatment is associated with a high risk of recurrent VTE (rVTE) and bleeding. OBJECTIVES: To analyze data from the Comparison of Acute Treatments in Cancer Hemostasis (CATCH) trial to describe the impact of rVTE and bleeding events on health-related quality of life. METHODS: The three-level EuroQol five-dimensional questionnaire (EQ-5D) data were collected monthly for up to 7 months in patients starting anticoagulation for newly diagnosed VTE. Analyses were designed to describe the impact of rVTE and bleeding on EQ-5D scores while controlling for effects of covariates such as background and clinical variables and longitudinal changes. A repeated-measures model with specification of the variance-covariance matrix to characterize the intrapatient correlation was used to estimate the utility values. The impact of an rVTE or a bleeding event was assumed to be reflected in the utility value when it occurred within 2 weeks from a planned data collection point. RESULTS: Data were available from 883 patients. A total of 76 rVTE and 159 bleeding events occurred during follow-up. rVTE had a significant impact on EQ-5D scores, with a decrement of -0.075 on the basis of our reference case (male, no metastasis, Eastern Cooperative Oncology Group score = 1, Western European), but different patients might have different decrements. Bleeding events had a smaller (nonstatistically significant) impact on EQ-5D scores. CONCLUSIONS: This data set study has quantified the decline in EQ-5D scores associated with experiencing rVTE or bleeding events in cancer patients. These results indicate the net gain in quality of life and impact on cost-effectiveness of secondary VTE prevention.

Physical after-effects of colposcopy and related procedures, and their inter-relationship with psychological distress: a longitudinal survey.

OBJECTIVE: To estimate prevalence of post-colposcopy physical after-effects and investigate associations between these and subsequent psychological distress. DESIGN: Longitudinal survey. SETTING: Two hospital-based colposcopy clinics. POPULATION: Women with abnormal cytology who underwent colposcopy (±related procedures). METHODS: Questionnaires were mailed to women 4, 8 and 12 months post-colposcopy. Details of physical after-effects (pain, bleeding and discharge) experienced post-colposcopy were collected at 4 months. Colposcopy-specific distress was measured using the Process Outcome-Specific Measure at all time-points. Linear mixed-effects regression was used to identify associations between physical after-effects and distress over 12 months, adjusting for socio-demographic and clinical variables. MAIN OUTCOME MEASURES: Prevalence of post-colposcopy physical after-effects. Associations between the presence of any physical after-effects, awareness of after-effects, and number of after-effects and distress. RESULTS: Five-hundred and eighty-four women were recruited (response rate = 73, 59 and 52% at 4, 8 and 12 months, respectively). Eighty-two percent of women reported one or more physical after-effect(s). Multiple physical after-effects were common (two after-effects = 25%; three after-effects = 25%). Psychological distress scores declined significantly over time. In adjusted analyses, women who experienced all three physical after-effects had on average a 4.58 (95% CI: 1.10-8.05) higher distress scored than those who experienced no after-effects. Women who were unaware of the possibility of experiencing after-effects scored significantly higher for distress during follow-up. CONCLUSIONS: The prevalence of physical after-effects of colposcopy and related procedures is high. The novel findings of inter-relationships between awareness of the possibility of after-effects and experiencing multiple after-effects, and post-colposcopy distress may be relevant to the development of interventions to alleviate post-colposcopy distress. TWEETABLE ABSTRACT: Experiencing multiple physical after-effects of colposcopy is associated with psychological distress.

Distress in patients with bleeding disorders: a single institutional cross-sectional study.

INTRODUCTION: Distress may affect a patient's ability to cope with and manage disease. AIM: To report distress prevalence in adult patients with bleeding disorders and determine whether specific clinical and health characteristics, including disease severity and employment status, are associated with distress. METHODS: Patients who visited a Haemophilia Treatment Centre (HTC) between January 1st, 2012 through February 28th, 2014 and who completed a distress screen, pain screen and questionnaire were evaluated cross sectionally. Distress was measured by the National Comprehensive Cancer Network Distress Management Tool, which allowed patients to rate recent distress on a 0-10 point scale. A rating of five or more was categorized as high distress. Pain was measured by the Brief Pain Inventory Short Form, which asked patients to rate pain types on 0-10 point scales. Patients reported employment and other demographic and behavioural information on the questionnaire. Primary diagnosis, age, HIV and HCV status were abstracted from medical records. Adjusted logistic regression was used to identify distress associations. RESULTS: High distress prevalence among 152 patients with bleeding disorders was 31.6%. Unemployment, disability, greater depressive symptoms and higher pain were associated with high distress in multivariable models. Bleeding disorder diagnosis, race/ethnicity, HIV/HCV status and on-demand treatment regimen were not associated with high distress. CONCLUSION: Distress among patients with congenital bleeding disorders followed at a comprehensive HTC was high and similar to that reported among patients with cancer. Future research should determine whether distress impacts clinical outcomes in patients with bleeding disorders as demonstrated in other chronic disorders.

Raising the Alarm: A Cross-Sectional Study Exploring the Factors Affecting Patients' Willingness to Escalate Care on Surgical Wards.

BACKGROUND: Delays in escalation of care for patients may contribute to poor outcome. The factors that influence surgical patients' willingness to call for help on wards are currently unknown. This study explored the factors that affect patients' willingness to call for help on surgical wards; how patients call for help and to whom; how to encourage patients to call for help, and the barriers to patients calling for help. METHODS: A cross-sectional study was conducted in three London hospitals using a questionnaire designed through expert opinion and the published literature. A total of 155 surgical patients (83% response rate) participated. RESULTS: Patients were more willing to call for help using the bedside buzzer or by calling a nurse compared to a doctor (p < 0.001). The prompts to calling for help patients were most likely to act on were bleeding and pain. Patients were more willing to call for help if encouraged by a healthcare professional than a relative or fellow patient (p < 0.01). Patients were more likely to worry about taking up too much time when calling for help than being perceived as difficult (p < 0.001). For some prompts, male patients were more willing to call for help (p < 0.05). CONCLUSIONS: This is the first study to identify factors affecting patients' willingness to call for help on surgical wards. Interventions that take these factors into account can be developed to encourage patients to call for help and may avoid delays in treatment.

Shared decision making in the management of children with newly diagnosed immune thrombocytopenia.

This study aimed to examine the treatment decision-making process for children hospitalized with newly diagnosed immune thrombocytopenia (ITP). Using focus groups, we studied children with ITP, parents of children with ITP, and health care professionals, inquiring about participants' experience with decision support and decision making in newly diagnosed ITP. Data were examined using thematic analysis. Themes that emerged from children were feelings of "anxiety, fear, and confusion"; the need to "understand information"; and "treatment choice," the experience of which was age dependent. For parents, "anxiety, fear, and confusion" was a dominant theme; "treatment choice" revealed that participants felt directed toward intravenous immune globulin (IVIG) for initial treatment. For health care professionals, "comfort level" highlighted factors contributing to professionals' comfort with offering options; "assumptions" were made about parental desire for participation in shared decision making (SDM) and parental acceptance of treatment options; "providing information" was informative regarding modes of facilitating SDM; and "treatment choice" revealed a discrepancy between current practice (directed toward IVIG) and the ideal of SDM. At our center, families of children with newly diagnosed ITP are not experiencing SDM. Our findings support the implementation of SDM to facilitate patient-centered care for the management of pediatric ITP.

Malignant wound management in advanced illness: new insights.

PURPOSE OF REVIEW: This article describes why this review is timely and relevant. To report on the recent research, which advances our understanding and practice of palliative wound care (wound-related pain and symptom management or wound palliation). RECENT FINDINGS: This article describes the main themes in the literature covered by the article. The main themes include the problem of malodour and the palliative management of cutaneous and subcutaneous malignancy of skin and nonskin origins. The findings from an international survey of measures to combat wound malodour are reported, which indicate that malodour is one of the most distressing and difficult to manage symptoms associated with malignant wounds. A relatively novel palliative treatment for cutaneous malignancy, electrochemotherapy, is outlined, together with the growing evidence supporting its use. SUMMARY: This article describes the implications of the findings for clinical practice or research. The findings of the wound malodour survey indicate that approaches to managing malodour are wide ranging, but ineffective. Collaborate research and development is needed with industry into interventions to combat malodour, which are based on the causal agents. The growing evidence of the effectiveness of electrochemotherapy, as an uncomplicated palliative treatment and method of managing symptoms, offers palliative care clinicians a means of managing the otherwise relentless progression of cutaneous malignancy.

Management of bleeding associated with malignant wounds.

Bleeding malignant wounds in palliative care patients can be anxiety-provoking for patients, their caregivers, and healthcare providers, and can be difficult to manage. We present the case of a 60-year-old man with a bleeding neck wound due to squamous cell carcinoma of the hypopharynx admitted to our inpatient palliative care unit. Management of bleeding included local wound care measures and psychosocial support for the patient and his wife. We review therapeutic approaches to managing bleeding malignant wounds with the aim of providing clinically useful information.

Relation between perceived blood loss and vasovagal symptoms in blood donors.

UNLABELLED: INTRODUCTION/RESULTS: This study examined whether a belief of significant blood loss may be associated with vasovagal symptoms, irrespective of actual blood loss. Individual differences in vasovagal symptoms among blood donors who had an equivalent amount of blood withdrawn were significantly associated with their rating of perceived blood loss. CONCLUSION: The anticipation or belief of blood loss, and perhaps more remotely associated ideas, may trigger processes similar to those induced by actual hemorrhage though further research is required to address other possibilities such as the inflation of ratings by vasovagal symptoms.

Validation of the FACIT-fatigue subscale, selected items from FACT-thrombocytopenia, and the SF-36v2 in patients with chronic immune thrombocytopenia.

PURPOSE: To assess the validity and reliability of the fatigue subscale of the Functional Assessment of Chronic Illness Therapy (FACIT-F), a 6-item subset from the thrombocytopenia subscale of the Functional Assessment of Cancer Therapy (FACT-Th6) and the Short Form-36 Version 2 (SF-36v2) in 2 clinical trials of the thrombopoietin receptor agonist eltrombopag in chronic immune thrombocytopenia (ITP) patients. METHODS: In the 6-month, RAndomized placebo-controlled ITP Study with Eltrombopag (RAISE; n = 197), the FACIT-F, FACT-Th6, and SF-36v2 were administered at baseline, day 43, weeks 14 and 26, or early withdrawal. In the ongoing open-label extension study, Eltrombopag EXTENDed Dosing Study (EXTEND; n = 154), measures were administered at baseline, at the beginning of each stage, and at permanent discontinuation of study medication. RESULTS: FACIT-F, FACT-Th6, and SF-36v2 demonstrated acceptable internal consistency reliability (i.e., all Cronbach's alphas >0.70) and test-retest reliability (all intraclass correlation coefficients >0.70). Construct validity was supported by moderate (0.35 < r < 0.50) to strong (r > 0.50) inter-measure correlations for baseline and change scores. A small to medium magnitude of effect was captured by the FACIT-F and FACT-Th6 among patients who experienced sustained platelet responses. CONCLUSIONS: Results provide support for the validity, reliability, and responsiveness of the FACIT-F, FACT-Th6, and SF-36v2 in chronic ITP patients.

Treatment non-adherence in teenage and young adult cancer patients: a preliminary study of patient perceptions.

OBJECTIVES: Non-adherence (NA) by adolescents receiving cancer treatment is believed to be a major problem. However, adequate measures of NA have not been developed. The purpose of this study was to (1) assess the internal reliability of a new scale reflecting low-risk NA behaviours, (2) examine whether the scores on this scale were associated with high-risk NA behaviours and (3) assess the relationship between NA behaviours and patient attitudes towards stopping treatment. METHODS: Thirty-three patients (16-24 years) with solid tumours reported on their previous adherence with treatment. Low-risk NA behaviours were assessed on a 0-40 scale derived from the sum of 10 items. High-risk NA behaviours and attitudes towards stopping treatment were assessed by questions with yes/no response options. RESULTS: Internal reliability of the low-risk NA scale was alpha=0.73. Patients not seeking help for pyrexia had higher total low-risk NA scores than those who sought help (mean 7.4, SD 5.3 vs mean 3.5, SD 3.6, t=2.1, p=0.03). There was also a trend for individuals who ignored pyrexia to be more likely to have contemplated stopping treatment than those who sought medical assistance (Fisher's Exact=0.09). CONCLUSIONS: A scale reflecting low-risk NA behaviour had good internal reliability and was associated with not seeking help when pyrexic. Ignoring a temperature was also associated with contemplating stopping treatment. We are now conducting a prospective study using the measure to assess validity against a range of information regarding NA.

Pediatric case study and review: is it a conversion disorder?

OBJECTIVE: It is common in health care settings for adolescent patients to report physical symptoms that are unexplained by physical disease or pathophysiologic processes. The diagnosis of conversion disorder is difficult to make as many of these patients present to primary care with complex, difficult-to-understand medical symptoms. Patients can present with a medical dilemma and a symptom model consistent with a conversion disorder, but there is a danger of misdiagnosis without a thorough medical work up. METHOD: This case report describes a patient where the misdiagnosis of conversion disorder could have had devastating long-lasting neurologic sequelae. It appeared as if an unconscious conflict was being expressed through physical symptoms as she had ongoing family stressors prior to the onset of mysterious symptoms. CONCLUSIONS: The patient was found to have a spinal cord arteriovenous malformation. This condition is relatively uncommon in the pediatric age group, and early diagnosis is rarely made.

The orthopaedic status of severe haemophiliacs in Spain.

This paper provides an outline of the results obtained in a cross-sectional study conducted primarily with the aim of ascertaining orthopaedic complications in a group of young severe A and B haemophiliacs, the effects which these complications have on the medical resources used with these patients, and the impact of severe haemophilia on their quality of life. Its secondary aim was to link their current orthopaedic status to the type of treatment they had received prior to the study. Eleven Spanish hospitals took part in this study, monitoring 70 severe haemophiliacs (FVIII:C <2%) without inhibitors who had a mean age of 21.6 years and a median age of 22. Retrospective data collected from birth to the conclusion of the study were used and, for certain variables, data from the last 12 months. The type of treatment given had been on-demand treatment, together with prophylaxis of variable time periods, which in 32 cases (45.7%) were prolonged (>6 months). In 40 cases (57.1%) the patients underwent one or more periods of prophylaxis. Thirty-three patients (47.8%) had over 1000 days of administration of factors VIII and IX. The analysis of the total study group reveal an average of 348 bleeding episodes per patient. The findings of this study revealed that 84.3% of these patients suffer from articular complaints on the Gilbert scale, and 85.7% on the Pettersson scale. In addition, pain was reported in 16.1% of the joints, the most frequently affected being the ankle joints. Twenty-six patients (37%) had undergone orthopaedic surgery from the time of birth to the conclusion of the study. The quality of life of the severe haemophiliacs reviewed seems to have been affected. During the last 12 months, there were 216 outpatient haematological visits and 176 orthopaedic-rehabilitation visits, as well as 12 radiological explorations and two hospitalizations. During these 12 months, medical expenditure totalled $55 473 per patient per year, the most important item being factor concentrates VIII/IX ($54 119 per patient per year). The type of treatment given to these patients (on-demand and/or as secondary prophylaxis) was found to be incapable of preventing haemophilic arthropathy or guaranteeing an acceptable quality of life, although both the administration of coagulant factor concentrate to such patients and the financial resources dedicated to their treatment was very high. Consequently, a strategic change is to be considered for the prevention of haemophilic arthropathy, based on the introduction of replacement treatment involving continuous administration of factors VIII and IX in primary prophylaxis regimens from the first years of life.

Assessing health-related quality-of-life in individuals with haemophilia.

The objectives of this study were to analyse current levels of health-related quality-of-life (HR-QoL) in individuals with severe haemophilia and to assess the scope for these levels to improve. To do this, 249 individuals with severe, moderate and mild haemophilia were asked to complete Medical Outcomes Study (MOS) Short-Form 36 (SF-36) and EuroQol (EQ-5D) questionnaires. Access was also gained to two appropriate normative data sets. The results from these questionnaires showed that HIV status, history of orthopaedic surgery and bleeding frequency in the previous calendar year were not strong predictors of HR-QoL for individuals with severe haemophilia. However, for the majority of scales, age was found to be a strong predictor of HR-QoL for this patient group. The results from the analysis also showed that compared to individuals with moderate/mild haemophilia and the UK male normative population, individuals with severe haemophilia generally recorded poorer levels of HR-QoL. These results suggest, therefore, that individuals with severe haemophilia have reduced levels of HR-QoL compared to individuals with moderate/mild haemophilia and the general population, irrespective of differences in age. The results also suggest that the scope for primary prophylaxis to increase HR-QoL in individuals with severe haemophilia is significant.

Sangrado psicógeno con estigmatización religiosa en una prepúber / Psychogenic bleeding with religious stigmata in a prepuberal girl

El sangrado de origen psíquico ha sido poco investigado debido a lo inusitado del trastorno. La estigmatización religiosa es aún más infrecuente, especialmente en niños. Aquí informamos de una niña prepúber de nueve años quien presentó varios episodios de sudación con sangre en piel y mucosas, asociados con estados de ansiedad y sin lesiones previas. Algunos de estos episodios se manifestaron en forma de estigmas religiosos en las palmas de las manos, plantas de los pies y región frontal, como corona de espinas. También hubo sangrado procedente de la pared vaginal y el tubo digestivo alto. Las improntas del exudado sanguíneo revelaron que se trataba de sangre periférica y la aplicación de la tira reactiva para detección de hemoglobina resultó positiva. Otras pruebas de laboratorio y de imagenología fueron negativas. Era improbable que el sangrado fuera autoinducido. La posibilidad de púrpura psicógena fue descartada, así como la de trastorno facticio. La paciente era una niña tímida con rasgos obsesivos y ansiosos, la menor de dos hijos de una familia nuclear de clase trabajadora residente en el Estado de México. Las relaciones con su hermano de 15 años eran conflictivas. Su madre era una mujer deprimida y obsesiva. El matrimonio de sus padres era disfuncional y las relaciones familiares de tipo amalgamado. La familia era católica, pero no especialmente religiosa. Los episodios de hematidrosis fueron mantenidos en secreto e interpretados como de naturaleza milagrosa. Después de un tratamiento con psicoterapia individual y familiar el sangrado fue cada vez menos frecuente y finalmente desapareció

Psychological factors and bleeding frequency in hemophilia. Lack of association.

To assess the role of psychological factors in hemophilic bleeding frequency we studied 51 severe hemophilic men above the age of 16 who were on home treatment and under care by five cooperating comprehensive hemophilia centers. Psychological status was assessed by three instruments [Minnesota Multiphasic Personality Inventory (MMPI); Holmes-Rahe Life Events Inventory (LEI); and Daily Hassles Scales], and bleeding episodes were recorded for a 3 month period. A multiple regression analysis showed no association between bleeding frequency and MMPI subgroups, LEI, or the frequency of hassles. There were no significant differences between hemophiliacs with high bleeding frequencies and those with low bleeding frequencies on any of the scales or tests. The MMPI scale scores and profiles and the Holmes-Rahe Life Event scores were not significantly different from norms. These data suggest that, at least among patients under comprehensive care and on home treatment, the psychological factors measured by these instruments are not related to the bleeding frequency of most hemophiliacs.