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

Abstract

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.

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

“…These results are consistent with the previous literature showing that MDS patients and their caregivers may have a poor understanding of this complex disease [7,8] and that information is a key strategy to improve patient and caregiver satisfaction [23]. However there could be an improvement in information provision over time, as only 34% of patients from a 2009 French survey felt that the information dispensed at the time of disclosure had been absolutely adequate [7]. This could be a positive effect of the efforts made over the years to improve information particularly through the use of leaflets [18].…”

“…Our results confirm a huge interest for more information about prognosis despite a small number of participants (here less than 10%) not wanting to know more. This wish is also consistent with studies among MDS patients who have generally expressed (94%) a wish for full information even if the truth is hard to cope with [7] and often (61%) request information on survival during consultations [25].…”

“…In a previous survey, MDS patients sometimes spontaneously asked for the use of the term cancer to describe their disease [7], but here the question "Is my MDS a cancer?" was not considered one of the most useful; the words used to define the disease may be less important than knowing its impact on chances of survival.…”

“…A large pool of questions was chosen from previous available QPLs (Table 1) and supplemented based on the available literature on MDS patients' information needs [7,8] and available patients' leaflets [18]. A final pool of 53 questions (Table 2), adapted to the specific MDS context in both Australia and France, was chosen.…”

“…MDS are often poorly understood by patients [7,8] and even physicians [9], as they involves several levels of complexity because of various systems of classification (the FAB, WHO and IPSS classifications for example), variable treatment, and they are always worrisome to patients because of the potential AML risk. In this context it is important to optimize the information conveyed to patients and their family caregivers, particularly about prognosis.…”