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

Highlights

• MDS patients and caregivers would have liked more information about prognosis (69.3%).

• Most participants endorsed a question prompt list (QPL) as absolutely useful (62.9%).

• The questions about prognosis were ranked among the first for usefulness.

• Interest in prognostic information was associated with interest in the QPL.

Abstract

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.

Introduction

Myelodysplastic syndromes (MDS) are haematopoietic malignancies, mainly occurring in patients over 65–70 years of age characterized by ineffective haematopoiesis leading to blood cytopenias, and progression to acute myeloid leukaemia (AML) in a third of patients [1]. On the basis of the International Prognosis Scoring System (IPSS) or its revised version (IPSS-R) [2], patients with MDS are usually subdivided for prognostic and therapeutic purposes into 4 or 5 groups. Lower-risk MDS have a low rate of leukaemic transformation and relatively longer survival times compared to higher-risk MDS. However lower-risk MDS remain life-threatening diseases since the median survival rate ranges between only 2 and 6 years, and in most cases (84%), the patient's death is directly attributable to MDS [3], [4]. The only curative approach available for MDS is an allogeneic haematopoietic stem cell transplantation (HSCT), which is not indicated for patients at the lower-risk stage and is suitable only for younger patients [5]. Azacitidine (a chemotherapeutic drug) is also an effective treatment for higher-risk patients [6] while lower-risk patients receive only symptomatic treatment of their cytopenias including transfusions or growth-factors. Finally, watchful waiting is often offered to lower-risk patients with asymptomatic disease.

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.

One way patients and their caregivers can ensure they receive the information they want, is to ask questions. A simple intervention based on the use of a question prompt list (QPL) could help them to gain greater control over the flow of information, so that they receive information they want when they want it. QPLs are lists of questions derived from interviews with patients, caregivers and clinicians, which patients may wish to ask their doctor or health care team. They can prompt questions the patient/caregiver had not previously thought of, give permission to ask difficult questions patients may feel hesitant to ask, provide the wording for questions, and generally endorse question asking. Several studies with cancer patients have shown that QPLs significantly increase the number of questions asked, especially about the prognosis of their disease, and improve patients’ satisfaction, and to lesser extent, their knowledge about the disease without affecting patients’ anxiety or the length of consultations [10], [11], [12], [13], [14], [15], [16].

To our knowledge none of the QPL studies focused on MDS. However, QPLs are likely to be useful for MDS, because the heterogeneity of MDS requires information tailoring. Moreover, elderly MDS people may receive answers to their most pressing questions, without being swamped by too many irrelevant details, facilitating recall [17]. Finally, the multiple medical consultations organized to disclose the precise diagnosis of MDS and to follow patients, enable each patient to voice their main concerns at several time points.

The first aim of the study was to assess the information needs of MDS patients and their caregivers, expressed through specific interest in each of the questions proposed in a QPL specifically adapted to MDS. The second aim was to collect the views of MDS patients and caregivers concerning the QPL's potential utility, and their feedback about how to improve the QPL.