Association between health literacy, communication and psychological distress among myelodysplastic syndromes patients.

MDS is a complex and potentially severe disease which can trigger psychological distress. A lack of information received and understood about MDS may also arouse feelings of distress. Low health literacy (HL) might play a role particularly among older patients. Our aim was to assess MDS-related distress and to study the factors associated with it, including medical and non-medical factors such as HL. A self-administered questionnaire was mailed to all members of French and Australian patients' national MDS associations. Data of 280 patients were analysed. A majority of patient (59.5%) reported low functional HL and 50% reported regular difficulties in asking physicians questions. Distress was not modified by gender, awareness of increased risk of developing leukaemia or MDS characteristics. French patients had a higher mean IES score (adjusted ß = 5.9, p = 0.004) compared to Australian patients. Poor satisfaction with information provided about MDS, lower functional HL and difficulties in asking physician's questions were also independently associated with distress. MDS-related distress seems more related to HL and communication with physicians than to MDS characteristics. More efforts are needed to improve health literacy, tailor information for MDS patients and support them psychologically in order to improve their emotional well-being.

Awareness of acute myeloid leukaemia risk induced by diagnosis of a myelodysplastic syndrome.

Myelodysplastic syndromes (MDS) can evolve to acute myeloid leukaemia (AML) in approximately 30% of cases. Knowing their AML risk is important for patients because it might impact adherence to care and psychological health. The aim of this study was to evaluate the awareness of AML risk among MDS patients and to study the factors associated with this awareness. A self-administered questionnaire was mailed to all members of French and Australian patients' national MDS associations. Data of 301 patients were analysed. Patients were satisfied with the information they had received, but 33.2% did not know that they had an increased risk of developing AML. Younger age, higher-risk MDS treatment, preferences for health-related information and satisfaction with information provided about treatment were the factors independently associated with awareness of AML risk. Compared to unaware patients, patients knowing their risk were more likely to participate in a hypothetical clinical trial (83.0% vs 72.4%, p=0.043). More efforts are needed to provide more systematic information about AML risk to patients wishing to know it. More research is needed to study if increasing awareness can lead to more active engagement of MDS patients in their care and can increase the rate of clinical trial participation.

Question prompt list responds to information needs of myelodysplastic syndromes patients and caregivers.

Myelodysplastic syndromes (MDS) are heterogeneous hematopoietic malignancies, often poorly understood by patients. Our aim was to obtain the views of MDS patients and family caregivers about a targeted question prompt list's (QPL) potential utility, and to evaluate their information needs. This targeted QPL, which included 53 suggested questions patients may ask onco-haematologists, was developed. A self-administered questionnaire eliciting feedback about the QPL and assessing its perceived usefulness was mailed to all members of Australian and French patients' national MDS associations. Respectively, 301 MDS patients and 53 caregivers responded. Most (76.4%) were satisfied with the information provided at MDS disclosure but would have liked more information about prognosis (69.3%). Consistently, the three most useful questions focused on the risk of leukaemic transformation, the impact of treatment on chances of survival and the severity of the MDS. The majority (62.9%) of both patients and caregivers perceived the QPL as 'absolutely' useful, particularly those who would have preferred more information about prognosis (adjusted odds ratio=2.3, 95% confidence interval [1.2-4.2], p=0.008). Our proposal of intervention through a QPL was generally welcomed and could particularly address specific MDS patient needs regarding prognosis information.

Disclosure of myelodysplastic syndrome diagnosis: improving patients' understanding and experience.

PURPOSE: How a diagnosis of cancer is disclosed can affect psychological morbidity. Haematological malignancy specialised terminology may make the disclosure difficult. We analysed how disclosure of a diagnosis of myelodysplastic syndrome (MDS) is experienced by patients. METHODS: Patients from the French MDS support group were questioned about their demographic and clinical characteristics, diagnosis disclosure circumstances as well as experiences and expectations. After a phase test, a written questionnaire was sent to the 150 members of the support group. RESULTS: Of the 73 patients who returned a useable questionnaire, disclosure had been experienced negatively by 32 patients (45%). Only 53% of those patients were satisfied with the information provided compared with 80% of those who had positive/neutral feelings (P = 0.02). Overall, patients felt they should have been given fuller information at the time of disclosure. In retrospect, almost all patients (94%) thought that comprehensive, accurate information should be provided at disclosure, even if the truth might be hard to cope with. Patients reporting not having been given satisfactory information complained about a lack of perspective (3) or clarity (7), eight (11%) mentioned cancer during the interview, and four explicitly expressed that this word should be more frequently used. CONCLUSION: Many patients had experienced disclosure negatively, frequently finding that the information provided had been insufficient and feeling that MDS was not well understood as a disease. Haematologists disclosing diagnosis to patients with a blood malignancy may benefit from following the same guidelines as oncologists in delivering comprehensive, understandable information.

Freedom to divorce or protection of marriage? The divorce laws in Denmark, Norway, and Sweden in the early twentieth century.

In the period 1909-1927, new laws concerning divorce and marriage were enacted by the Scandinavian countries. Both at the time and more recently, these laws were considered as "liberal" as they promoted greater freedom to divorce based on individuality and gender equality. In this article, the authors first analyze the changes in these Family laws in the early twentieth century. Then, the authors study the effect of these laws on divorce and marriage patterns. As these laws did not modify the trend in divorce rates, the authors ask why this was the case. The authors' conclusions are that the laws were more concerned with preserving the sanctity of marriage and maintaining social order than with promoting individual freedom and gender equality.