Patient resources in the therapeutic education of haemophiliacs in France: their skills and roles as defined by consensus of a working group

Summary. The activities of ‘expert patients’ or ‘patient tutors’, who help educate their peers, are gaining recognition in the health care system. This study investigates the role played by such patients in therapeutic education programmes organized by caregivers to validate the role of patients in implementing the therapeutic education of haemophilic patients and to define the skills required for such activities. This study employs the consensus methodology recommended by France’s National Authority for Health. The working group includes seven caregivers from Hemophiliac Treatment Centers (HTCs) and three patients from the French Association of Hemophiliacs (FAH). The role of patients in haemophilia education is recognized. Patients participating in the education of their peers are referred to as ‘patient resources’. A patient resource should be an adult, a volunteer and live in the same region as his peers. Candidates are chosen by the FAH and the HTCs to serve based on their motivation to facilitate the education of other patients as well as on their psychological and pedagogical aptitudes. A patient resource participates in the conception and administration of therapeutic education programmes. He also mediates between the caregivers and the patients. He ensures that the patients understand the material and are able to apply their knowledge in daily life. His activities are governed by professional ethics. Seven categories of skills were defined, permitting the group to determine precisely which skills are required to function as a patient resource. Supervision of the patients is planned to reinforce reflexive practices in the patients. Evolution of the health care system has led patients to become involved in therapeutic education. This phenomenon calls for a framework to be developed and an evaluation of its eventual effects.     

Post-COVID syndrome: pulmonary complications

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has infected millions of people worlwide and caused a pandemic that is still ongoing. The virus can cause a disease named as COVID-19, which is composed of multi systemic manifestations with a pulmonary system predominance. As the time passes, we are dealing more and more with a wide variety of effects and complications of the disease in survivors as far as with concerns about the clinical outcome and the timeline of symptoms in different patients. Since the lungs are the most involved organs and the post-COVID prolonged and persistent effects are mainly related to the pulmonary system, it is crucial to define and predict the outcome and to determine the individuals that can progress to fibrosis and loss of function of lungs. This review summarizes the current literature regarding the pulmonary complications in post-COVID syndrome and the management of these conditions.     

Measurement of family impact of skin disease: further validation of the Family Dermatology Life Quality Index (FDLQI)

Aim To adapt the Impact on Family scale (IOF), originally developed for families of children with chronic illnesses, for use in families of adult patients and to examine the convergent validity of the Family Dermatology Life Quality Index (FDLQI) by comparing it with the adapted version of the IOF scale. Methods Adult family members of patients with different skin diseases attending the out‐patients clinic of a secondary referral centre completed the FDLQI and the adapted version of the IOF scale, whereas patients completed the Dermatology Life Quality Index (DLQI). Results A total of 50 patients and 50 family members/partners participated in the study. The mean scores for the three instruments were as follows: FDLQI = 6.0 (SD = 6.4, median = 4); IOF scale = 27.9 (SD = 8.2, median = 29); DLQI = 5.4 (SD = 5.6, median = 3). There was no difference between male and female participants in the mean scores of any of the three instruments. The FDLQI demonstrated high internal consistency (Cronbach's α = 0.91). Factor analysis revealed the presence of one factor structure underlying the items of the FDLQI, which explained 55.8% of the total variance. The IOF scale also showed a high internal consistency (Cronbach's α = 0.89). The results of factor analysis revealed one dominant factor and three weaker factors, which together explained 72% of the total variance. The convergent validity of the FDLQI was demonstrated by a highly significant positive correlation between the mean FDLQI and the IOF scale scores (r_s = 0.61, P < 0.0001). All the items of the FDLQI also had significant correlations with the mean total IOF scale scores (P < 0.05). Conclusions The results of this study have demonstrated that with minor modifications IOF scale, which was originally developed for families of children suffering from chronic illnesses, can also be used in families of adult dermatology patients. The study has also provided further evidence of the validity of the newly developed FDLQI.     

THE ‘VASOVAGAL EFFECT’ OF NITRATES: AN UNDER-RECOGNISED COMPLICATION OF NITRATE USE

SUMMARY Nitrates are useful drugs in cardiovascular medicine. They have a presumed vasovagal effect, which is a rare but often under-recognised complication that is partly caused by central inhibition of the sympathetic nervous system. However, no consistent variable associated with the presumed vasovagal effects following nitrate administration can be identified, and there are only limited reports of the phenomenon in the literature. In fact, the true prevalence of such a complication is unknown, because no data from observational studies exist, although it would seem likely to be a rare event. A greater awareness and recognition of this unusual effect of nitrate use is necessary in view of the increasing use of nitrates. Fortunately, recovery is generally the rule with supportive management.     

Neutrophilic dermatosis of the dorsal hands in a farmer

Neutrophilic dermatosis of the dorsal hands is a recently described disorder, which is similar to Sweet's syndrome. It is characterized by erythematous plaques, pustules and haemorrhagic bullae located solely on the dorsal surface of the hands. We describe a 57-year-old man with neutrophilic dermatosis of the dorsal hands that occurred following exposure to a chemical fertilizer. There are few cases reported in the literature regarding neutrophilic dermatosis and the aetiology remains unclear. For the present case, we propose that neutrophilic dermatosis of the dorsal hands might have been induced by the chemical fertilizer.     

喉切除术后患者的生存质量量表

目的:研制并测试喉切除术后患者生存质量量表。方法:依据1993年WHO制定的生存质量一般准则,通过指标的收集和筛选,制定喉切除术后患者生存质量量表。选择1996-06/2002-06在中山大学附属第一医院因喉癌行喉切除术后满6个月的患者81例,对36例喉部分切除和45例喉全切除的患者进行上述量表问卷调查,考核该量表的可行性、信度和效度。结果:①量表指标筛选结果:经过对收集的81个指标的多次筛选,最终得到生存质量量表的22个评价指标。②量表结构:由22个评价指标及1个有关患者对自己总体健康状况和生存质量评价的问题(满分100分)组成。覆盖了身体机能、喉功能、心理状态、独立生活能力、社会关系与环境以及气管造口等6个方面。采用等级描述评分法,每个问题有5个选项,由差到好依次分值为1～5分。③量表的接受率和完成率分别为73%和93%,完成时间为10min以内;分半信度、克朗巴赫系数和方差比分别为0.842,0.889和0.155,表明量表有较好的信度。通过测试准则关联效度及内容效度,表明量表是有效的。结论:设计的喉切除术后患者生存质量量表有喉切除术的专业特性,具有较好的可行性、信度及效度。