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

Leukemia Research 73 (2018) 44–50

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

T

Youssoufa M. Ousseinea, Phyllis N. Butowb, Pierre Fenauxc,d, Rebecca Dringe, Patrick Festyf, ⁎ Léa Restivoa, Norbert Veyg,h, Julien Mancinii, Aix-Marseille Univ, INSERM, IRD, SESSTIM, “Cancer, Biomedicine & Society” Group, Marseille, France Centre for Medical Psychology & Evidence-Based Decision-Making (CeMPED), and Psycho-Oncology Co-Operative Research Group (PoCoG), The University of Sydney, Sydney, NSW, Australia c AP-HP, Hôpital Saint-Louis, Service d’Hématologie Clinique, Groupe Francophone des Myélodysplasies (GFM), Paris, France d Paris 7 University, Paris, France e Leukaemia Foundation of Australia, Melbourne, Australia f Connaître et Combattre les Myélodysplasies, Paris, France g Institut Paoli-Calmettes, Marseille, F-13273 France h Aix-Marseille Univ, Inserm, CNRS, UM105, CRCM, Marseille, France i Aix-Marseille Univ, APHM, INSERM, IRD, SESSTIM, “Cancer, Biomedicine & Society” Group, Hop Timone, BIOSTIC, Marseille, France a

b

A R T I C LE I N FO

A B S T R A C T

Keywords: Avoidance Doctor-patient communication Health literacy Intrusion Myelodysplastic syndromes Psychological distress

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 β = 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.

1. Introduction A diagnosis of myelodysplastic syndrome (MDS), i.e. a cancerous disease with a variable risk of evolution into acute myeloid leukaemia [1] can trigger different emotions, particularly, psychological distress [2], as MDS can potentially be a life-threatening disease without any curative treatment except stem-cell transplant, which is not applicable for most patients [3]. Among lower-risk patients watchful waiting or symptomatic treatment might also generate distress because of the lack of MDS-focused treatment. In the context of these heterogeneous potentially life-threatening syndromes, difficulty understanding the

disease and the aim of treatment [4] might also be associated with more distress. Despite the growing interest in patient-reported outcomes (PROs) and their association with overall survival [5,6], to our knowledge only a few studies focused on MDS patients [7–11]. Most of these studies investigated quality of life (QoL) of MDS patients [8,9,5,6] and one study highlighted that emotional problems were ranked as one of the most important domain [10]. More specifically, a previous small survey (n = 47) on MDS patients showed that one in three patients reported anxiety/depression problems [7]. A larger QoL study confirmed the frequent report of anxiety/depression problems (37.9%) to a higher

⁎ Corresponding author at: UMR1252 SESSTIM CANBIOS (Aix-Marseille Univ), Institut Paoli-Calmettes, 232, Bd Ste Marguerite, BP 156, 13273 Marseille Cedex 9, France. E-mail addresses: [email protected], [email protected] (J. Mancini).

https://doi.org/10.1016/j.leukres.2018.08.020 Received 17 May 2018; Received in revised form 24 July 2018; Accepted 12 August 2018 Available online 05 September 2018 0145-2126/ Crown Copyright © 2018 Published by Elsevier Ltd. All rights reserved.

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301 were MDS patients and 53 were family caregivers (who could also participate if they were members of one of the two participating associations). However, the responses of family caregivers were not included in this analysis focusing on psychological distress. The final sample analysed here includes 280 patients (154 French and 126 Australian patients) who answered at least seven of the fifteen items on the IES scale (93%) (Fig. 1).

level than among age- and sex- matched peers [9]. However, to our knowledge only one study has specifically evaluated MDS-related distress and the clinical factors associated with it [5]. Among the non-medical factors potentially associated with increased psychological distress among patients with MDS, health literacy (HL) and other communication barriers such as language might play a role [12]. HL has been defined as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make basic health decisions” [13]. Among cancer patients, lower functional HL has been shown to be associated with poorer health-related quality of life and increased anxiety and depression levels [14]. In addition, MDS patients who prefer an active role in decision-making have a better QoL [15]. However, involvement in decision-making needs adequate access and understanding of medical information, i.e. an adequate level of HL. As MDS patients are frequently older they are more likely to have a lower level of functional HL [16]. However HL is clearly multidimensional [17,18] and communicative aspects might potentiate or mitigate the effect of functional HL. To our knowledge no previous study has focused on the relationships between HL and distress among onco-haematological patients in general and MDS patients in particular. Our aim was therefore to assess MDS-related distress and to study the factors associated with it, including medical and non-medical factors such as HL.

2.2. Measures 2.2.1. General characteristics Collected variables included socio-demographics (age, gender, education level, current financial difficulties and country) and MDS general characteristics (year from MDS diagnosis, latest treatment considered as a proxy of the severity of the MDS, and awareness of leukaemia risk induced by MDS diagnosis [20]). 2.2.2. Functional health literacy and difficulties in asking physicians questions Functional HL level was evaluated using the Single Item Literacy Screener (SILS) asking “How often do you have someone help you read hospital materials?” [21]. As previously suggested [22], response categories were merged into 3 categories: never (adequate HL), rarely (marginal HL) and at least sometimes (inadequate HL). As in this aged population with a complex disease the source of information is expected to be mainly physicians, and because communication is a potentially modifiable factor [19], we also focused on patients’ self-perceived ability to ask questions using the following item: “Do you usually find asking your doctor questions difficult?”. Responses were merged to obtain the same 3 categories: never (No difficulties), rarely (rare difficulties) and at least sometimes (regular difficulties). Furthermore, we hypothesised that the absence of difficulty in asking questions is a proxy of communicative HL and could mitigate the impact of a low level of functional HL.

2. Materials and methods 2.1. Design and sample A cross-sectional survey was conducted with a broader objective of developing a question prompt list (QPL) to reduce the unmet information needs of MDS patients [19]. A self-administered questionnaire was mailed to all members of two national patients’ association: the Leukaemia Foundation of Australia and Connaître et Combattre les Myélodysplasies in France. Respectively, 147 (19.4%) and 245 (53.0%) members of the Australian and French associations responded (Fig. 1). The overall response rate (calculated using the declared number of members of both associations) was 32.1%. Of respondents,

2.2.3. Preferences for information and involvement in decision-making Patients’ preferences for information and involvement were evaluated using Cassileth’s Information Styles Questionnaire. Patients were

Fig. 1. Participants’ flow chart. 45

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asked to rate between 0–4 the level of detail about their illness that they prefer to have [23]. Specific preferences for information about prognosis were also measured with the item: “At diagnosis disclosure, would you have preferred more or less information about prognosis?” Responses were merged to obtain 2 categories: “no” and “less/more”. Satisfaction with the information provided about MDS was also measured with the item: “At diagnosis disclosure, was the information given by the health team about the MDS satisfactory?” Responses were also merged to obtain 3 categories: “no (not all + not really)”, “yes maybe” and “yes absolutely”. The control preference scale was used to determine preferences for involvement in treatment decision-making: passive, shared or active [24].

Table 1 Main patients’ characteristics and MDS-related distress (N = 280). MDS-related distress (IES score) Patient's characteristics

2.2.4. MDS-related distress The impact of event scale (IES) [25] was used to measure the psychological impact of MDS diagnosis disclosure. The 15-item IES scale focuses on intrusion (characterized by unbidden thoughts and images, troubled dreams, strong pangs or waves of feelings, and repetitive behaviour) and avoidance (which includes ideational constriction, denial of the meanings and consequences of the event, blunted sensation, behavioural inhibition or counterphobic activity, and awareness of emotional numbness) [25]. It gives a total score ranging from 0 to 75 and identifies a total score threshold for clinical concern using 30 as the cut-off [26]. Intrusion and avoidance subscale scores range from 0 to 35 and 0 to 40, respectively.

3. Results 3.1. Participants’ characteristic The median age of the 280 French and Australian MDS patients was 69.5 years (range 19–93). They were surveyed a median of three years [IQR: 2–6 years] after MDS diagnosis. Most patients (65%) had no financial difficulties. Shared decision-making was the preferred mode of DM (45.5%) with the remainder preferring passive (43.3%) and active (11.3%) decision-making modes. One in two patients (53%) had an education level greater than or equal to high-school graduation (Table 1). Most patients were classified as having adequate functional HL (40.5%) and no difficulties in asking physician’s questions (50%) but about one third of patients were classified as having inadequate functional HL (37.2%) and regular difficulties in asking physicians questions (29%, Table 1). Those two variables were very weakly correlated (Spearman’s ρ = 0.11, p = 0.078). Moreover, patients with difficulties in asking physicians questions were less often satisfied with the

Mean

SD

p-value

Age

mean ± SD

70 ± 11.6

0.054b

Gender

Male Female

144 (51.4) 136 (48.6)

20.4 22.2

16.7 16.1

0.361

Financial difficulties

No Yes

179 (64.9) 97 (35.1)

20.3 23

17.1 15.1

0.185

Country

Australia France

126 (45) 154 (55)

17.6 24.3

15.0 16.9

0.001

Graduate level education

No Yes

131 (47) 148 (53)

22.6 20.0

17.5 15.4

0.183

Years from MDS diagnosis

Median [IQR]

3 [2–6]

−0.059b

Most recent care

Watchful waiting Lower-risk MDS treatment Higher-risk MDS treatment Stem cell Transplant

60 (21.4)

20.2

16.1

115 (41.1)

21.6

15.9

84 (30)

21.7

17.2

21 (7.5)

20.6

17.2

Functional health literacy

Inadequate Marginal Adequate

100 (37.2) 60 (22.3) 109 (40.5)

24.7 22.1 17.5

16.8 15.7 15.6

0.005

Difficulties in asking physician’s questions

Regular difficulties Rare difficulties No difficulties

80 (29)

27.1

16.4

< 0.001

58 (21.0)

20.6

16

138 (50)

17.9

15.6

Preference for health-related information (in a scale from 0 to 4)

0-2 3 4

24 (8.8) 49 (17.9) 200 (73.3)

19.2 22.1 21.0

18.8 17.8 15.7

0.77

Satisfied with information about MDS at disclosure

No Yes maybe Yes absolutely

65 (23.6) 80 (29) 131 (47.5)

24.6 23.4 18.1

17.1 16.5 15.2

0.011

Preferences for more/less information on prognosis

No Less/more

75 (27.6) 197 (72.4)

17.4 22.6

15 16.5

0.018

Preferred mode for Decision Making

Passive Shared Active

119 (43.3) 125 (45.5) 31 (11.3)

19.3 22.9 20.1

16.3 16.2 15.1

0.218

Awareness of leukaemia risk induced by MDS diagnosis

Insufficient Adequate

91 (32.5) 189 (67.5)

22.4 20.7

17.3 15.9

0.427

2.3. Statistical analysis Descriptive statistics were generated to describe the study sample. The association between MDS-related distress indices (IES score and subscores) and demographic or clinical variables were tested using independent t-tests for dichotomous variables, ANOVA for other categorical variables and Pearson or Spearman correlations for continuous or ordinal variables. A multiple linear regression model using a backward elimination procedure was conducted to identify factors independently associated with MDS-related distress. All the variables found in the univariate analyses to be associated with a p-value < 0.20 were tested in this model, and their interactions. Systematic adjustment was performed for latest treatment received (proxy of the severity of the MDS) and years from MDS diagnosis as those variables are expected to be associated with cancer-related distress [27,28]. The same model was then applied with intrusion and avoidance as independent variables. All statistical analyses were two-tailed, and results were taken to be statistically significant when p-values < 0.05 were obtained. These analyses were performed using SPSS PASW Statistics 18.0 (IBM Inc., New York, USA).

N (%)a

0.359

0.336 0.934

IES: impact of event scale. Bold values denote p < 0.05. a Unless otherwise specified. b Pearson correlation coefficient.

information they had received about MDS at disclosure (Spearman’s ρ = −0.32, p < 0.001) while HL level was not correlated with satisfaction (Spearman’s ρ = −0.02, p = 0.725).

3.2. MDS-related distress Three years after diagnosis, the mean IES score was 21.2 (95% 46

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Fig. 2. Psychological distress depending on country and most recent treatment.

underestimated as it was evaluated not at the time of diagnosis but on average 3 years later, among members of patients’ associations, who are probably better informed (or more eager to obtain information) than other MDS patient not members of such associations. The French MDS patients were more distressed and reported more intrusive thoughts about MDS compared to Australian patients. The difference between countries was not explained by level of HL or by difficulties communicating with physicians, as country remained significant in multivariate analysis. No other available variables explained this difference and more research is needed to understand those differences. However, this finding might be explained by different associations’ recruitment methods or different healthcare provision but may also relate to cultural differences. Cultural variance in anxiety has often been described [29] and psychological distress might be more frequent in the French population in general, such as shown by OECD statistics [30]. Analysis also revealed a positive relation between MDS-related distress and variables evaluating the transmission of information, focusing on the patients’ ability to understand but also on the potential difficulties for physicians to provide satisfactory information given the time and pedagogy needed to convey complex information. Myelodysplastic syndromes are heterogeneous and may range from asymptomatic to life-threatening conditions. Thus, the understanding of MDS is very important. However, MDS patients are generally older (median age: 69.5 years) and thus more likely to have a low level of functional HL as was shown in a previous review [31]. As hypothesised, almost two in three MDS patients had difficulties understanding basic health information (59.5%). To our knowledge this is the first time that HL has been measured among MDS patients but this prevalence is similar to results obtained in other older groups of cancer patients [32]. In this study, inadequate functional HL was associated with higher global distress, consistent with findings of previous studies conducted among cancer patients [14]. As in previous studies among MDS patients [5,9], we did not observe any association between age and distress. This result might be explained by the fact that the older population are more resilient, especially regarding emotional problems [33].

Confidence Interval 19.3–23.2). One in three patients (30.7%) had an IES score superior to 30; this proportion was higher in French patients (38.3% vs 21.4% among Australian, p = 0.002). Independently of most recent care, French patients also presented with a significantly higher mean IES score compared to Australian patients (Fig. 2). Furthermore, French patients had more difficulties in asking physicians questions compared to Australian patients (67.5% vs 32.5%, p = 0.029). No significant relationship was found between country and HL, but on average, patients with inadequate functional HL or regular difficulties in asking physicians questions had significantly higher MDS-related distress (Table 1). Lack of satisfaction with the information provided about MDS at disclosure was associated with higher MDS-related distress. Patients reporting too much or too little information about prognosis were also significantly more distressed (Table 1). MDS-related distress level was not correlated with age (Pearson’s ρ = −0.054, p = 0.359), years from MDS diagnosis (Pearson’s ρ = −0.059, p = 0.336), or sex, education level, awareness of leukaemia risk induced by MDS diagnosis, most recent treatment, information preferences, financial difficulties or general preferences for involvement in decision-making (Table 1). The multivariate model confirmed that MDS related distress was associated with functional HL, difficulties in asking physicians questions, satisfaction with information and country (Table 2). No significant interactions between the explanatory variables included in the model were observed. Regarding intrusion (Table 2), the same factors were found to be associated except that satisfaction with information about MDS at disclosure did not reach statistical significance. At the opposite, this latter variable was the only one which was statistically significantly associated with avoidance (Table 2).

4. Discussion This study was conducted to assess MDS-related distress and to study the factors associated with it, including HL. It showed a nonnegligible level of distress, increased among low literate patients. More than one in three patients (30.7%) reported a high level of distress (IES score > 30) [26]. Moreover, actual distress may be 47

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Table 2 Multiple linear regression analysis of MDS-related distress, intrusion and avoidance. MDS-related distress (IES score) Predictive variable

Intrusion

Avoidance

Final β

P-value

Final β

P-value

Final β

P-value

Country

France Australia

5.9 refa

0.004

3.6 refa

0.001

2.1 refa

0.084

Functional health literacy

Inadequate Marginal Adequate

4.4 2.5 ref

0.046 0.32

2.5 0.9 ref

0.025 0.469

1.8 1.6 ref

0.169 0.305

Difficulties in asking physician’s questions

High difficulties Marginal difficulties No difficulties

6.1 1.9 ref

0.012 0.449

3.1 0.7 ref

0.012 0.58

2.8 1.2 ref

0.054 0.435

Satisfied with information about MDS at disclosure

No Yes maybe Yes absolutely

6.6 5.8 ref

0.013 0.011

2.5 1.8 ref

0.068 0.124

4.1 3.9 ref

0.011 0.005

Most recent care

Watchful waiting Lower-risk MDS treatment Higher-risk MDS treatment Stem cell Transplant

−4.6 −3.6 −1.37 ref

0.270 0.350 0.723

−5.3 −3.5 −2.1 ref

0.140 0.077 0.274

0.7 −0.1 0.8 ref

0.77 0.945 0.734

−0.2

0.085

−0.1

0.171

−0.1

0.096

Years from MDS diagnosis

IES: impact of event scale. Bold values denote p < 0.05. a Referent category.

cross-sectional survey and distress might cause a wish to be less informed that might not be respected. This would be consistent with a recent study on the bidirectional relationship between satisfaction, information received and anxiety, showing that provision of information may reduce subsequent anxiety, while reducing anxiety levels may increase satisfaction with received information [37]. When faced with a stressful event such as a diagnosis of cancer, the appearance of intrusive feelings (repetitive and pervasive memory of the diagnosis, including images, thoughts or perceptions and causing distress) is common. However, when distress from intrusions becomes too great, a person can enter a period of avoidance (suppressing stressor-related thoughts) to prevent becoming overwhelmed by the intrusions [38]. A high level of at least one of these two sub-scales is a sign of the presence of psychological distress. Our results showed that intrusion and avoidance subscales of the Impact of Event Scale were each associated with different factors. Intrusion was more strongly associated with inadequate functional HL and difficulties in asking questions while avoidance was more strongly associated with lack of satisfaction with information at disclosure. The differences observed about these two subscales might be explained by the emotional processing of information [39]. A failure in the acquisition of information might prevent patients from processing their emotions and increase subsequent intrusive thoughts. While dissatisfaction with the information received at disclosure may lead some patients to higher avoidance. These results suggest that as well as improving doctor-patient communication, psychological counselling may be helpful to people with MDS, to help patients to effectively process their emotions. Such counselling might be proposed to every patient as the relationship between severity of the disease (approximated through most recent care) and distress did not reach statistical significance. Moreover, as intrusion and avoidance are also frequent feelings, simple proposal might not be sufficient and screening tools such as the distress thermometer might help to refer more systematically distressed patients. In other context such a process was associated with improved outcomes [40]. Several limitations to the study have been acknowledged, in particular the cross-sectional design. The response rate remains low even if higher than other previous internet survey among MDS patients [41,42]. However, it is probably underestimated because the member lists of the involved associations were not systematically updated. Despite using a disease-related measure of distress, distressed patients

However, the association between HL and distress reinforces the importance of effective communication between patients and physicians. Moreover, this might be particularly important for MDS patients because it is difficult to create written, standardised resources for syndromes that are very heterogeneous. Therefore, the physician becomes more than ever the primary source of information and needs to tailor the information to both the syndrome characteristics and the patients’ information needs and level of HL. Thus, interventions need to target both the patient and the physician. Teaching health communication for future physicians can give them the skills they need to interact better with their patients including those with low HL. In addition, the systematic implementation of a process for measuring HL screening [22] could allow tailoring communication through hospital materials and oral communication adapted to patients' capacities and needs. More specifically the use of a question prompt list could help MDS patients to gain greater control over the flow of information, so that they receive information they want when they want it [4]. Many patients (50%) expressed difficulties in communicating with physicians and in asking them questions, and these variables were significantly associated with MDS-related distress. This is in line with earlier research showing that patients who feel known, listened to, reassured and comforted have less distress [34]. Thus, training in effective elicitation and response to patients’ concerns may assist physicians to reduce distress in their MDS patients. Difficulties in asking physician’s questions were very weakly correlated with functional HL in this sample. Furthermore, no significant interaction was observed between these two factors. These results invalidate our hypothesis on the possible mitigating effect of communicative HL. Nonetheless, a multidimensional measure of HL would be more appropriate to assess if communicative HL mitigates the effect of functional HL. Our results showed that many patients (52.5%) were not completely satisfied with information about MDS at disclosure and that these patients were more distressed. These findings are in line with results among cancer patients showing that unmet information needs are frequent [35] and that information satisfaction is associated with emotional well being [36]. Dissatisfaction with information about MDS obtained at disclosure was the only factor specifically associated with avoidant thinking. Whether patients’ distress depended on their satisfaction with information or vice versa could not be determined in this 48

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might also have judged themselves as less able to understand and communicate. We could not use a multidimensional HL measure such as FCCHL [43] because of its lack of validation among the French and Australian populations at time of the survey.

[9]

5. Conclusions Our results showed that MDS-related distress is frequent, particularly in France. It seems more related to access and understanding of information, i.e. to HL level and communication with physicians, rather than to MDS characteristics. Despite this study not demonstrating a causal relationship between communication and the level of psychological distress, it is certainly important to improve communication in this generally older population with a complex syndrome. More efforts are needed to improve health literacy and to tailor communication to patients. We have launched a trial to evaluate if a question prompt list can help MDS patients to get the information they need and improve their emotional well-being (NCT02781441). The need for psychological support should also be a concern in the care of MDS patients.

[10]

[11]

[12]

[13]

[14]

Funding sources Youssoufa Mlaraha Ousseine was supported by the A*MIDEX foundation [grant n° ANR-11-IDEX-0001-02] funded by the French Government "Investissements d'Avenir" program") The project was supported by the PACA Cancéropôle [grant number 2013-14], the French National Cancer Institute [grant number INCA_8102], the Marseille SIRIC [grant INCa-DGOS-Inserm 6038] and the Centre for Medical Psychology and Evidence-based Decision-making (CeMPED, The University of Sydney). JM collaboration with CeMPED was made possible through mobility grants from Fondation ARC [grant number SAE20120604962], Fondation de France [grant number 201200029658], and ADEREM [Mobilités-sept-2012].

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Acknowledgements [19]

The authors would like to thank Najoua Guelmani (Institut PaoliCalmettes), Sarah Jenny (Connaître et Combattre les Myélodysplasies, CCM) and Katlyn MacDonald (CeMPED) for their technical help and the members of Leukaemia Foundation of Australia and CCM for their participation.

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